tag:blogger.com,1999:blog-43392537424862948472024-03-15T18:10:04.877-07:00My Story-My Battle with Pseudomyxoma Peritonei (PMP)This blog is the story of my battle with a very rare cancer called Pseudomyxoma Peritonei (PMP). Its an on-going story in a diarised form which I am updating regularly.
Only two or three people in every million will develop this rare condition. There are few support groups and many people have never heard of the condition. Hopefully my blog will help fellow sufferers understand that they are not alone as I share my thoughts and feelings.
Davehttp://www.blogger.com/profile/08987847582949613057noreply@blogger.comBlogger143125tag:blogger.com,1999:blog-4339253742486294847.post-16639507972887538482020-02-02T13:05:00.002-08:002020-02-02T13:05:25.257-08:00<div align="center" class="MsoNormal" style="font-family: Calibri; font-size: 11pt; line-height: 15.693333625793457px; margin: 0in 0in 8pt; text-align: center;">
<b><u>Ten Year Survivor Anniversary; Time….how it flies<o:p></o:p></u></b></div>
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Today, February the 2<sup>nd</sup> marks the ten-year anniversary of my first cytoreductive surgery with HIPEC. How time flies…<o:p></o:p></div>
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But what is time? Time doesn’t exist in the way we perceive it, it’s not a natural phenomenon. It’s a man-made invention like the motor car or the microwave, purely there for convenience. There to allow us to count the hours, count the days, count the years, arrange meetings and rendezvous and mark the point at which things happen. A constant, ticking away infinitely, slipping away like grains of sand in the palm of your hand…<o:p></o:p></div>
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07:30hrs on Tuesday 2<sup>nd</sup> February 2010 marks the point in which I was taken to theatre to start a mammoth twelve-hour operation known as cytoreductive surgery with HIPEC (Heated Intra-Peritoneal Chemotherapy). During the operation I had a mid-line laparotomy, my spleen was removed, my gall bladder removed, my umbilicus excised, I had a right hemicolectomy, my greater and lesser omentum was removed, I had a lower peritonectomy, liver capsulectomy and my rectum resected. During the operation my abdominal cavity was washed with the heated chemotherapy solution and I had a temporary ileostomy.<o:p></o:p></div>
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I remember coming around very briefly on the evening of the operation whilst I was in the intensive care unit. Intubated and unable to speak I remember a blurry, hazy image…a tiled ceiling, a silhouette to the left of me and someone moving around to my right. And a reassuring voice…."don’t worry David, you have had your operation and everything is fine”.<o:p></o:p></div>
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Ten years ago today yet as clear in my mind as the day it happened. I have a great deal to thank the team at Basingstoke for. Ten years of being alive, seeing the girls grow into young women and their independence grow. Ten years continuing to build our lives and make the most of what we have been given.<o:p></o:p></div>
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It’s not been an easy ten years however….<o:p></o:p></div>
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Not long after my recovery mum was diagnosed and treated for breast cancer. I’d had my ileostomy reversal operation and just as I was getting better she became ill and underwent surgery, chemotherapy and radiology. In 2012 I was re-diagnosed and underwent a second six-hour de-bulking surgery with another 13-day stay in hospital.2014 saw me re-diagnosed for the third time with Pseudomyxoma Peritonei and I remain on watch and wait to this day. In 2015 I suffered a prolapsed disc and had a micro-discectomy on my L5S1 disc, the three-month period leading up to the operation was agony and far more painful than anything I experience with my cancer treatment. I lost a stone in weight and became addicted to the morphine patches that had been prescribed going cold turkey trying to ween myself off of them, a horrible experience. Mum was again diagnosed with cancer, this time a mild form of leukaemia which thankfully is being managed with tablets. 2018 cancer visited us again, this time my father in law. Sadly, he lost his battle just six months after being diagnosed with lung cancer, we miss him immensely. I underwent a second operation on the same disc after a second prolapse in January of 2019.<o:p></o:p></div>
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More recently Tracey suffered a horrific injury to her left foot with a dislocation and open fracture to her Calcaneus (heel bone) after a fall from a step ladder. Tracey then also had surgery to pin her foot back together and close the wound. It’s been a terrible injury and six-months down the line she is still in pain and not very mobile with a long road to recovery ahead. <o:p></o:p></div>
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How do you all keep going friends regularly ask? I’m not sure if I’m honest. We just do. But it’s not all been bad. As I have said previously we have seen our girls flourish and grow. Leaving school, studying at university and successfully gaining employment. We have been on wonderful holidays to some beautiful places and shared some amazing times together. I’m still caving and enjoying photography and the outdoor life. I’m currently awaiting sign off from the doctor to allow me to learn to scuba dive!<o:p></o:p></div>
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Snorkelling in Corfu!</div>
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Caving in Wookey Hole, Somerset, UK</div>
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However, I am acutely conscious that I do still have cancer. Pseudomyxoma Peritonei still lurks deep within me around my bile duct and my right kidney. Each year slowly growing millimetre by millimetre, at some point something will have to be done and I’m likely to face major surgery yet again. <o:p></o:p></div>
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The results of my last scan in December saw my consultant write to me stating that “there is nothing to be overly concerned about at this point” intimating that at somewhere in the future he would have to step in.<o:p></o:p></div>
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So whilst we get on with our lives and enjoy each day we are given I am acutely aware of time. Time, ticking away in the background whilst Pseudomyxoma lurks in the shadows….. We busy our lives and rush around succumbing to the demands of everyday life all the time the grains of sand silently slipping from our grasp.<o:p></o:p></div>
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So my message to you all is to make time for your loved ones, throw yourselves into life, take every opportunity to experience whatever you can and enjoy every moment you are given as you never know what lies around the corner. After all, time waits for no man……<o:p></o:p></div>
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Davehttp://www.blogger.com/profile/08987847582949613057noreply@blogger.com5tag:blogger.com,1999:blog-4339253742486294847.post-78819461769613607522018-12-21T06:57:00.000-08:002018-12-21T06:57:22.026-08:00CT Scan results<br />
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In my last post you will recall that I was about to go to Basingstoke for my annual CT scan. The scan went ahead with out any issues and with the usual efficiency that we experience on scan day at Basingstoke and North Hampshire Hospital<br />
The wait for the results was similar to recent years; we waited 4 weeks and three days for the letter to arrive. Usually I wait for the four week anniversary and then call the specialist nurses to chase the results only to find that a letter was posted just days before. It usually lands on the doormat the following day!<br />
This year I waited just a couple of days more and sure enough the letter arrived without me having to bother the very busy specialist nurses at Basingstoke. To be honest the "scanxiety" wasn't too bad at all this year and we just got on with things without too much worry.<br />
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The good news is that the results were "fine". Whilst my tumour markers are up slightly the team at Basingstoke do not seem concerned at present. The areas of reoccurance that are being monitored have grown by a couple of millimetres but again are nothing to worry about.<br />
The team at Basingstoke have given me the option of a repeat scan in two years time rather than yearly if I want it but I prefer to stick to the yearly scan...peace of mind.<br />
The fact that they have offered me a two year scan is however encouraging and suggests that they don't expect anything to change too much in that period. Happy days!<br />
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So we have continued to get on with life. I remain fit and healthy and active as ever. In September Tracey and I had our first holiday abroad together in a number of years in Rhodes, Greece. The girls now grown up stayed at home and we had a lovely holiday on our own at an adult only resort. It was peaceful, quiet and very relaxing. We spent time relaxing by the pool and on the beach. We had a day out in Rhodes old town which is a UNESCO World Heritage site and very interesting. We swam in the pool and I went snorkelling most days. It was perfect!<br />
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Snorkelling</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4HFxrLTKNPTNr4HQE0ySquwMVm4VtP4kPGZgKeQaOebjwep_Xv8odVF-6dZxTJZLUMxlPADO_arSj6Mx4vxRNaCCKQT0gDqf2YNvfBOSiLfqYaW-ERGddQvl4sGKMoXqZ80MyiIz9a_KR/s1600/Cabana+under+the+stars.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1067" data-original-width="1600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4HFxrLTKNPTNr4HQE0ySquwMVm4VtP4kPGZgKeQaOebjwep_Xv8odVF-6dZxTJZLUMxlPADO_arSj6Mx4vxRNaCCKQT0gDqf2YNvfBOSiLfqYaW-ERGddQvl4sGKMoXqZ80MyiIz9a_KR/s320/Cabana+under+the+stars.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Moonlit cabana beds on the beach</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Rhodes Old Town</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Rhodes Old Town</td></tr>
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Interestingly I found obtaining holiday insurance much easier this time around. Last time we went there were few insurance companies that would insure me and I used MIA online. Ironically this year MIA Online wouldn't insure me yet I managed to find multiple companies that would on the comparison websites and at a very reasonable rate too!<br />
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We plan to book our next trip away early in the New Year.<br />
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I continue to spend much of my free time out of doors and have had some great days out over the summer and autumn period. Most memorable was a day walking, foraging and taking photo's in Savernake Forest with my good friend Jon.</div>
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<tr><td class="tr-caption" style="text-align: center;">Fly Agaric mushroom- Savernake forest.<br />
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I have also managed to do some caving and have started a project to film as much of Swildons Hole in Priddy in Somerset as I can. I need to do this across multiple trips filming section by section. Below is some footage from the very first section of cave and not the final edit. I'll share that in a few months time when its finished!<br />
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So hopefully as you can see it is still possible to live a full and active life after treatment for Pseudomyxoma Peritonei. In-fact, after two cytoreductive surgeries....<br />
The one thing I have learnt is that life is short and you need to make the most of it, experience what you can when you can and enjoy the world around you whist you can. You never know when that might change.<br />
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Finally, I'd like to wish you all a very Merry Christmas and a happy, healthy New Year.<br />
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DaveDavehttp://www.blogger.com/profile/08987847582949613057noreply@blogger.com8tag:blogger.com,1999:blog-4339253742486294847.post-21560809749156219322018-09-01T13:14:00.000-07:002018-09-01T13:14:27.616-07:00Still Here!<br />
I'm Still here!<br />
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I know its been a long time since my last post, I won't apologise as I have been busy just getting on with life!<br />
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Whilst I'm still currently on "watch and wait" Pseudomyxoma has been far from my mind. I continue to be well and I'm making the most of every minute of it! I have been on watch and wait now for three years or more and little has changed.<br />
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I continue with annual CT scans and bloods being taken to measure my tumour markers at the six month mark between scans.<br />
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The blood results have been OK but the markers are steadily on the rise-<br />
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<b>Tumour Marker 2017 2018 </b> <b>should be less than</b><br />
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<a href="https://www.nhs.uk/conditions/cea-test/" target="_blank">CEA</a> 4 ug/L 5 ug/L 5.00 ug/L<br />
<a href="https://emedicine.medscape.com/article/2087513-overview" target="_blank">CA 19-9</a> 18 kU/L 20 kU/L 35.00 kU/L<br />
<a href="https://en.wikipedia.org/wiki/CA-125" target="_blank">CA125 </a> 5 kU/L 6 kU/L 35.00 kU/L<br />
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This continues a trend from the 2016 results. Whilst both the CA19-9 and the CA125 markers are within the normal range the CEA is right on the top end of the normal range for 2018. Am I worried....? Not yet, whats to say the next results might not reduce? I guess I'll just have to wait and see. I suspect that the tumour markers alone are not something to be worried about and are only part of the diagnostics. The next CT scan will be the real test....<br />
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Talking of which, I now have a date; 19th October. Judging by my last CT I don't expect to hear of any results for around four weeks after the scan has been done. So that puts the date somewhere around mid to late November. Fingers crossed!<br />
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As I have eluded to above we have continued to get on with life. I continue to enjoy keeping fit although have suffered with my back again recently. So it looks like my running days are over, time for a road bike me thinks! I have continued to swim regularly and have enjoyed it very much. You may have noticed that I have created a "Club" on Strava for people with Pseudomyxoma to share their achievements.<br />
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We have been lucky enough to have some good holidays here in the UK and have been blessed by an amazing summer with long periods of hot weather. I continue to enjoy my amateur photography and film making. It satisfies my creative appetite! Here's just a few of my favourites!<br />
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Ilfracombe, Devon.<br />
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Newqay, Cornwall.<br />
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Mousehole, Cornwall. <br />
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So I plan to give you my next update after my CT scan and blood results have been issued some time in November. Hopefully the news will be good. As the saying goes for now I'll just "keep calm and carry on!".......<br />
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Davehttp://www.blogger.com/profile/08987847582949613057noreply@blogger.com6tag:blogger.com,1999:blog-4339253742486294847.post-318862156645819542018-02-25T07:12:00.003-08:002018-02-25T07:12:50.262-08:00A New Year brings new adventures!<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: "Helvetica Neue"; font-stretch: normal; line-height: normal;">
<span style="-webkit-font-kerning: none;">With the New Year well underway and the promise of spring just around the corner the mind is already starting to plan new adventures. Right now its very cold here in the UK and the threat of snow looms as the “Beast from the East” as the media has dubbed it breathes its icy wind all the way from Siberia. Cold air is being pushed east to west across the UK with daytime temperatures due to be hovering around zero by midweek. Yet, if you find a spot out of the wind the sun does have some warmth in it. A warm kiss on the cheek ,the days lengthening, and for the keen eyed the early stirrings of the natural world brings the promise of warmer days to come.</span></div>
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<span style="font-kerning: none;">But not to let winter beat me I have already managed some small adventures. I continue with my running and swimming. The swimming in particular has really helped rebuild my core and lower back muscles that have taken such battering over the last few years. Im pretty sure that the subsequent back problems I suffered after my operations for Pseudomyxoma had something to do with the imbalance if the muscles in the core. I think there was always an underlying issue there but the operations didn’t help. However the exercise definitely seems to be working and I’m feeling really well at the moment!</span></div>
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<span style="font-kerning: none;">I have also been back underground and taken a colleague of mine on his first caving trip! Piotr had shown an interest for some time and it was great to finally get him underground. The weather that weekend was awful with torrential rain and flooding so I had to rethink where we were going to ensure the trip was safe and able to go ahead. This meant a trip back to a cave where I first started out; Goatchurch Cavern in Burrington Coombe in the Mendip Hills.</span></div>
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<span style="font-kerning: none;">It’s a small, short cave and is a favourite for beginners so was perfect for Piotr's first trip. The nice big entrance soon gives way to narrow passages and rifts and interestingly named obstacles such as “The coffin lid” and “ The drainpipe”!</span></div>
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<span style="font-kerning: none;">I have also managed some short walks over the winter. Its one of my favourite times of the year. With nature largely dormant and fast asleep its a peaceful, quiet time of the year. With “golden hour” at a reasonable time in the morning and early evening it makes capturing those amazing sun rises and sun sets so much easier with the camera.</span></div>
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<span style="font-kerning: none;">Talking of camera’s I have now added a new dimension to my film and photography allowing me to get shots from the air using a drone! Ive only managed a few short clips whilst I get the hang of using it at present . I’m a big kid at heart and this is a great toy to play with and I have lots of plans to use it to help add a different angle to future films of my mini adventures! So watch this space….!</span></div>
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<span style="font-kerning: none;">The family are well and both Jess and Chloe are growing up too fast! Jess has secured a full time job an is working in a marketing department for a large company using her graphics and multi media skills whilst Chloe has managed to secure herself a place on a course at Bristol zoo studying zoological management. Whilst Chloe was at her interviewed I also managed to grab a couple of hours with the camera snapping some of the residents!</span></div>
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<span style="-webkit-font-kerning: none;">I’m really lucky that my health continues to be good. With my next scan not planned until October I can hopefully just get on with life and enjoy it. I do plan to get a blood test done in the next month or so just to keep tabs on my tumour markers between now and the scan. 12 month is a long time to wait for a scan when you know that you do still have cancer lurking deep inside. So far its stayed stable and not done anything. Long may it continue……as I have plenty more adventures planned for the summer!</span></div>
Davehttp://www.blogger.com/profile/08987847582949613057noreply@blogger.com0tag:blogger.com,1999:blog-4339253742486294847.post-70539372201059933742017-11-18T09:28:00.001-08:002017-11-18T09:28:40.380-08:00Ignorance is bliss....<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: "Helvetica Neue"; font-stretch: normal; line-height: normal;">
<span style="-webkit-font-kerning: none;">I’m not going to apologise for the length of time since my last post. If I’m honest I have been hiding in the safe place called “watch and wait”. Ignorance can be bliss!</span></div>
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<span style="font-kerning: none;">I have been busy getting on with life. We have had a great summer with days out and family holidays. We had a fantastic couple of weeks away in west Wales and Cornwall with great weather and days spent walking and relaxing on the beach.</span></div>
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Sunset on Perranporth beach.<br />
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<span style="font-kerning: none;"> I’ve been hiking in the Brecon Beacons and finally completed a circular walk I’d been intending to do for a very long time taking in some of the highest peaks in south Wales.</span></div>
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<span style="font-kerning: none;">My health is good. I’m back running and continue swimming. In fact I’d say that I’m fitter now than I have been in a long time. I believe exercise is a very important factor in staying well.</span></div>
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<span style="font-kerning: none;">I spent the summer getting on with life. Pseudomyxoma seemed such a long way away and life was getting back to normal, even to the point it was before Pseudomyxoma made its shock appearance into our lives and I embraced it wholeheartedly.</span></div>
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<span style="font-kerning: none;">I felt fit, healthy and was enjoying my family, friends and the world around me.</span></div>
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<span style="font-kerning: none;">But the annual CT scan date in October was like an annoying alarm sounding someway off in the darkest depths of my mind. As the summer wore on the reality of my situation crept slowly forward to the front of my mind. I have Pseudomyxoma Peritonei and I am on “watch and wait”. By the time October had arrived and the CT appointment confirmed, the annoying alarm sounding in the distance had grown to a light house fog horn cutting loudly through the gloom.</span></div>
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<span style="font-kerning: none;">Then in the weeks that passed after the scan had been done the “scanxiety” slowly grew. Week one is fine, you know you are not going to hear anything and its life as normal. Week two is similar, get on with life as normal but keep your mobile phone close by. Week three is different, you may get a call or letter and definitely don’t go anywhere with out your phone. By week four you are anxious…this is the point at which I usually cave in and call the specialist nurses to see if there is any news. Thats what happened this year….</span></div>
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<span style="font-kerning: none;">I rang exactly four weeks to the day of the CT appointment. I initially got the answerphone and left a message. That was it, the die was cast and like it or not the answer was coming. I carried on with work, mobile phone just inches away on the desk. And then, less than an hour later a call came in from Basingstoke, it was time.</span></div>
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<span style="font-kerning: none;">Linda Cass the Pseudomyxoma specialist nurse was on the other end of the line and advised that a letter had been posted some days before. It was good news! Nothing had changed, the areas of concerned had not grown and my tumour markers remained normal “which is encouraging”! They didn’t want to see me for another year with the next CT scan planned for October ’18.</span></div>
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<span style="font-kerning: none;">Amazing news! I could feel the weight that had steadily built up over the last few weeks physically lift from my shoulders. Tracey and the girls will be thrilled!</span></div>
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<span style="-webkit-font-kerning: none;">So there it is, I’m a free man for the next year at least. Pseudomyxoma can be locked away again for the next twelve months in the deepest darkest recesses of my mind. Time to plan some new adventures…..!</span></div>
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Davehttp://www.blogger.com/profile/08987847582949613057noreply@blogger.com12tag:blogger.com,1999:blog-4339253742486294847.post-66434397296080019412017-06-04T08:20:00.000-07:002017-06-04T08:23:18.368-07:00Enjoy life and create memories...<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 13px; line-height: normal;">
<span style="font-kerning: none;">Its been quite some time since my last post…I’ve been busy getting on with life! It’s been a great start to the year so far.</span></div>
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<span style="font-kerning: none;">I guess the big news is that my blood tests that I had done some weeks back came back all clear. I had the bloods done locally and arranged to collect the results from my GP surgery. I then scanned them and mailed them directly to the specialist nurses at Basingstoke. I was pleased to get a response within a couple of hours to say that they had looked at them with Tom Cecil and all looked fine. The CEA, CA19-9 and CA 125 tumour markers were all within their normal ranges. So a big sigh of relief albeit with the caveat that my tumour markers have never been high to my knowledge at any point in my journey thus far. Never the less, a good sign.</span></div>
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<span style="font-kerning: none;"> So the plan is now to carry on as normal until the next scheduled CT scan in October and continue to make the most of life.</span></div>
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<span style="font-kerning: none;">As previously mentioned the year thus far has been a good one, I feel well and am enjoying life. We started the year with a family trip to Lyme Regis where nine of us shared a fantastic house at Harcombe just outside of Lyme itself. It was beautifully equipped and even had an indoor pool that we made use of. It was a fabulous weekend that the family will always remember.</span></div>
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<span style="font-kerning: none;">I continue to get underground with the lads and have even combined my love for photography with caving and started to get some pretty good results. The first trip of the year saw Jess join me for only her second caving adventure. Now she is a lot older I think she enjoyed it a lot more. The trip saw us showing her and “uncle Dave” the sights of Box mines in Wiltshire. The mine was originally started back in the Roman era extracting the stone to build the nearby city of Bath. This continued down the centuries with the mine reaching its peak in the 1800’s. Many of the miners inscriptions from the period can still be clearly seen on the walls as if they were written just yesterday. During the second world war munitions were also stored in the mine and an area beyond the “Wind tunnel” is still owned by the MOD. In all there is over 90km of passage to explore with the highlight being the impressive Cathedral chamber where the stone was hauled to the surface.</span></div>
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<tr><td class="tr-caption" style="text-align: center;">Jess & Uncle Dave in Cathedral chamber, Box mine, Wiltshire.</td></tr>
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<span style="-webkit-text-stroke-width: initial;">My second trip was a true caving trip into Fairy Quarry caves exploring Fairy, Hillwithey and Hilliars cave to view the spectacular formations in Cambridge grotto.</span><span style="font-kerning: none;"></span></div>
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<span style="font-kerning: none;">Tracey and I also managed our first holiday away together without the girls since before they were born. We stayed in New Quay, Wales and had a fantastic week there. The holiday was amazing and we spent time walking hand in hand on deserted beaches and exploring the local coastline. It was perfect.</span></div>
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<span style="font-kerning: none;">I continue to exercise regularly swimming twice a week and now starting to run again more regularly. Working with the local physiotherapy team I’m slowly getting back into it and running a short distance once a week with no back pain whatsoever. It’s great to be back as I love my running!</span></div>
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<span style="font-kerning: none;">I am also looking forward to my local lake to re-open after the closed season so that I can get back to my fishing. I love the spot where I go, it’s quiet and away from everything nestled between hills in a small valley on the edge of the cotswold hills. Its full of wildlife with grebe’s, kingfishers , buzzards and deer. With few people wanting to walk the two fields to get there with all their fishing gear its always quiet and the perfect place to wind down and who know’s, even catch a few fish!</span></div>
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<span style="font-kerning: none;">Life is good right now, life is really good. The pessimist in me however cant help but think that this cant continue, that something will come and spoil the happy vibe.After all I cant get away from the fact that I still have Pseudomyxoma Peritonei. Whilst I have been well, we have been watching my waste line, despite all of the exercise my tummy does seem a little bigger, is this just age or is this the first signs that Pseudomyxoma is taking hold again? I know Tracey is worried by it as it is one of the tell tale signs. Is it PMP or just middle age spread? This is the worry that we have as PMP sufferers and I guess the worry that any cancer sufferer has. Any little thing, any little sign, a bad day when you don't feel so well, fatigue or an ache or pain somewhere…..is it the big C again? For now we’ll keep watching, I have contemplated measuring my waistline regularly to look to see if its growing but I don't want to get obsessed by it. For a first time in a long time cancer seems a long way away from my life things are going well and people are forgetting what we have been through and to some extent , because I’m well, the fact that I still do have cancer. I’ll take that and run with it as long as I can. There is a lot to be said for blissful ignorance. So until the CT scan or anything else happens I plan to just keep on doing what I’m doing. Enjoy life and create memories….</span></div>
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Davehttp://www.blogger.com/profile/08987847582949613057noreply@blogger.com7tag:blogger.com,1999:blog-4339253742486294847.post-82235664107535430712017-01-29T07:16:00.001-08:002017-01-29T07:16:40.624-08:00Thursday 2nd Feb 2017- My Seven Year Anniversary<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; line-height: normal;">
<span style="-webkit-font-kerning: none;">Thursday 2nd February sees the seven year anniversary of my first Cytoreductive surgery at Basingstoke and North Hampshire hospital. It’s hard to believe how time has flown. Since that day I have also had a ileostomy reversal following this surgery and a second de-bulking surgery in August 2012. And am currently on a “watch and wait” programme following my third diagnosis of Pseudomyxoma Peritonei.</span></div>
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<span style="font-kerning: none;"> The surgery was a huge12 hour procedure in which my spleen, gall bladder, greater and lesser omentum, were removed along with a pelvic peritonectomy, right hemicolectomy and anterior resection were performed. This was followed by an hour of heated intra peritoneal chemotherapy or HIPEC where the remaining organs were scrubbed and washed with the solution. </span></div>
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<span style="font-kerning: none;"> I spent a week in intensive care followed by a stay on the specialist C2 ward at the hospital before being discharged after 13 days.</span></div>
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<span style="-webkit-font-kerning: none;">It’s testament to the work and dedication of the team at Basingstoke that I am still here today living a normal life and able to celebrate my seventh year anniversary.</span></div>
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<span style="font-kerning: none;">Whilst the whole ordeal has obviously been tough at times it steered my life down a path that I obviously wouldn't have gone down otherwise and allowed me to meet some wonderful people along the way.</span></div>
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<span style="font-kerning: none;"> My first interaction with other fellow PMP’ers was via the Christies Pseudomyxoma forum way back in 2009. There were only a few of us on there then and at that time an estimated one person per million per annum would be diagnosed with PMP. So we were all in a “one in a million” club. I was met with open arms to the forum and received a great deal of support it was great to be able to talk with others in my predicament. Graham Davies was the first to welcome me to the forum and even came to see me whist I was in ICU in 2010. Unfortunately we never got to meet as only family visitors were allowed. Sadly we lost Graham to PMP a few years later. Other members included Chris P who had one of the longest threads on the forum aptly named the MOAT (mother of all threads!) and Dawn Green who also went on to found Pseudomyxoma Survivor, both of whom lost their battles with Pseudomyxoma. Steve “Bumper Treweeks was also a member and is an very active guy who runs ultra distance marathons.Angela Brook was also an active member and also runs the Pseudomyxoma Survivor charity currently along with other trustees.</span></div>
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<span style="font-kerning: none;"> During my first stay at Basingstoke I also was blessed with meeting some lovely people a few of which I am still in contact with today. Margaret was recovering from her surgery and took me under her wing on my arrival at the hospital. She was able to share with me her experiences and what she had learnt, the do’s and don't do’s. It was invaluable information that prepared me for what was about to happen for which I am very grateful. Margaret lives in Ireland and we still speak on the phone and exchange Christmas cards. I also met Paul and his wife Ann who had travelled all the way from Malta for his operation. I first saw Paul on my visit to ICU the night before my operation Paul had been in there a few weeks and had a tough time. Again I still speak to Paul and Ann regularly and we exchange Christmas cards. I also met Mark and Helen who I am still in contact with via the Pseudomyxoma Survivor Facebook group. After my operation when I returned to the ward I shared a room with Ron. An undertaker who lived in a nearby village with his family who shared some interesting tales about his life experiences. Talks with Ron on an evening were always interesting and humorous!</span></div>
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<span style="font-kerning: none;">Following my operation and subsequent ileostomy reversal I shared a great experience with family and friends when we walked the Snowdon Horseshoe in north Wales as a fundraiser for the hospital. Steve Treweeks and his son Jake joined us and Steve raised money for the Christie where he had his operation. Steve’s wife Tracey, daughter Abi and son William also joined us later on and it was great to meet them all. A truly amazing family that have become great friends. The whole weekend has etched great memories in my mind which I will never forget.</span></div>
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<span style="font-kerning: none;">Along my PMP journey I was also lucky enough to meet with Chris Geiger and his wife Catherine. Chris was in the process of writing a book called the Cancer Survivors Club and I was lucky enough to get my story included in the book. I also accompanied Chris on a radio interview for BBC radio Bristol during the book launch. Again a great opportunity and experience which I thoroughly enjoyed. I also was lucky enough to meet many of the other cancer survivors whose stories were included in the book at the official book launch. A truly humbling experience.</span></div>
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<span style="font-kerning: none;"> I was also lucky enough to meet the great man himself; Paul Sugarbaker who pioneered the operation that I had undergone- Cytoreductive Surgery is also known as the “Sugarbaker technique”. My consultants; Brendan Moran and Tom Cecil had been taught the technique at Basingstoke hospital by Dr Sugarbaker. The first of which had created so much smoke in the operating theatre that without adequate extraction had triggered the fire alarms and saw the fire brigade turn up! We met at the first patient forum held at the hospital and spent a great evening at the black tie event afterwards. It was great to see the nurses and doctors that had cared for me on a social event, many of whom we barely recognised in there suits and ball gowns! Great memories.</span></div>
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<span style="font-kerning: none;">My second debulking surgery took place in August of 2012. It was a six hour surgery where I can lay claim to being the first patient to use the newly equipped high dependency ward! There I met Robin and Karen. Robin had his operation at the same time as me and we helped each other through the days that followed. Often with great humour and a good deal of laughter which I’m sure sped up our recovery. C2 ward Olympics were talked about, improving communications between bedrooms through the use of two cardboard urine bottles and a long piece of string, fifty shades of brown (which I wont go into) and “cuppa tea?” being squawked at each other. Happy memories in difficult times. We remain great friends.</span></div>
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<span style="font-kerning: none;">So these are just a few of my memories along the path I have been walking since being diagnosed with Pseudomyxoma and having my first surgery seven years ago on the 2nd February 2010. There are many more and I’m sorry If I have omitted any that anyone reading this may have, there are so many. Really happy times where I have been lucky enough to meet such great people. So I guess I do have something to thank Pseudomyxoma for.</span></div>
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<span style="font-kerning: none;"> Nowadays we are told that two or three people per million per annum will be diagnosed with Pseudomyxoma peritonei. We are no longer a “one in a million club”. The expertise of the teams across the world are being relied upon by so many people who find themselves in this predicament.</span></div>
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<span style="-webkit-font-kerning: none;">February 4th is world cancer day! Lets support it in any way we can and help those working so hard in laboratories and hospitals around the world find a cure to a disease that affects so many people internationally every minute of every day.</span></div>
Davehttp://www.blogger.com/profile/08987847582949613057noreply@blogger.com5tag:blogger.com,1999:blog-4339253742486294847.post-35148322024532051982017-01-15T07:05:00.000-08:002017-01-15T07:05:32.578-08:00A New Year...<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; line-height: normal;">
<span style="-webkit-font-kerning: none;"><span style="font-family: Arial, Helvetica, sans-serif;">So here we are now well into 2017 and the Christmas festivities are fading as the routine of everyday life kicks back in. 2016 ended with the good news from Basingstoke that my cancer had not grown and that my tumour markers remain normal. So the plan is to continue with a “watch and wait” approach and not to repeat my next CT scan until November. I spent some time mulling this over as whilst I understand that too many CT scans are not good for you, to wait a whole year to see if things have changed is a worry. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: Arial, Helvetica, sans-serif;"> My concerns are that whilst I still have Pseudomyxoma present within me there is a chance that it will spread. At present there are three very small area’s that are being watched around the kidneys and the bile ducts.These could remain dormant for years and hopefully that is what will happen but I cant help worrying that they could metastasize and appear somewhere else in my body.</span></span></div>
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<span style="font-kerning: none;"><span style="font-family: Arial, Helvetica, sans-serif;">Previous discussions with the team at Basingstoke has concluded that to deal with these small areas of reoccurrence would mean a huge operation called a “whipple procedure". There are big risks associated with this operation and whilst I am well and living a full and active life and whilst these areas of reoccurrence are unchanged, the risks associated with the procedure outweigh the possibility the the areas of disease will grow or metastasize. Hence “watch and wait”.</span></span></div>
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<span style="font-kerning: none;"><span style="font-family: Arial, Helvetica, sans-serif;">So after some further discussion with the team at Basingstoke I have decided that if CT scans are not a good idea then the second best thing is to continue to monitor my bloods at a local level. So I have arranged with my GP that at six monthly intervals I will have bloods taken that will specifically monitor my tumour markers. The tumour markers that the team at Basingstoke monitor are the CEA (Carcinoembyonic antigen), CA125 (Cancer antigen 125) and CA 19-9 markers. The blood results after each test will be shared with the team at Basingstoke who can review them for changes.</span></span></div>
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<span style="font-kerning: none;"><span style="font-family: Arial, Helvetica, sans-serif;">The CEA test measures the Carcinoembyonic antigen, a glycoprotein which is present in normal mucosal cells but is increased in colorectal cancers. CA 125 test measures the amount of protein CA 125 is present in the blood and is often associated with ovarian cancers as well as gastrointestinal cancers. The CA 19-9 looks for elevated levels of an intracellular adhesion molecule and is often used for patients with pancreatic and biliary tract cancers as well as colorectal cancers.</span></span></div>
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<span style="font-kerning: none;"><span style="font-family: Arial, Helvetica, sans-serif;">Right now this appears to be my best option and makes living with Pseudomyxoma a little easier. If the tumour markers change then I will book a follow up appointment with the team at Basingstoke and we will go from there. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: Arial, Helvetica, sans-serif;">So for now is a case of “keep calm and carry on”! I have become very good at compartmentalising and shutting away Pseudomyxoma in the darkest depths of my mind. People often ask “how do you live with this thing hanging over you?” the answer…”I have no choice”. I am being closely monitored and I have to trust that this is the right approach and that we will deal with things if and when they change. Until that point we just crack on as normal. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: Arial, Helvetica, sans-serif;">So that’s what I have been doing these last few months. I have managed a few trips underground and been to two caves on Mendip that I had never been inside in my 25 years of caving; Sludge Pit Hole and Thrupe Swallet. Being smaller less visited caves and with the winter month upon us we had to cut one trip short due to roosting bats! I have also been walking regularly and have further trips to the Brecon beacons planned. I have also been making the most of time off over the festive season with the family and we enjoyed some great days together and had lots of fun.</span></span></div>
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<span style="font-kerning: none;"><span style="font-family: Arial, Helvetica, sans-serif;"> Bats in Thrupe Swallet-Mendip</span></span></div>
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<span style="-webkit-font-kerning: none;"><span style="font-family: Arial, Helvetica, sans-serif;">Right now life is good and Pseudomyxoma is securely locked away in the back of my mind. Lets hope it stays there for a very long time!</span></span></div>
Davehttp://www.blogger.com/profile/08987847582949613057noreply@blogger.com0tag:blogger.com,1999:blog-4339253742486294847.post-88931763811609414722016-11-12T06:32:00.001-08:002016-11-12T06:32:24.889-08:00CT Scan Results<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; line-height: normal;">
<span style="-webkit-font-kerning: none;">After four weeks and one day of waiting for a letter through the post I finally caved and phoned the specialist nurses at Basingstoke to find out the results of my latest CT scan. When I say I caved, I was aware that Tracey was really starting to worry at the lack of news whereas I was happy to continue in “blissful ignorance” somewhat fearful of what might be coming our way. But to keep Tracey and the girls hanging on was just not right and a little selfish so I took a deep breath and made the call. Ironically the letter landed on the doormat only two days later!</span></div>
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<span style="font-kerning: none;">I spoke to Linda whilst I was at work who was able to read me the letter that had been sent. Basically it advised that the three areas of concern that the team at Basingstoke have been watching had remained stable and there was no change. My tumour markers were also normal. So good news there too. There was no plan to do anything and a repeat CT scan would be done in October 2017.A huge wave of relief washed over me. The process of compartmentalising the emotions that come with the annual scan and locking them away deep at the back of my mind broke down momentarily and emotion surged to the surface. I needed a moment to compose myself, a deep breath and then back to business as usual.</span></div>
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<span style="font-kerning: none;"> I rang Tracey and shared the news and I could again feel the relief and the emotion down the telephone line. We were free for another year.</span></div>
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<span style="font-kerning: none;">I’m not sure how I feel about waiting a whole year before my next CT scan though? I still have Pseudomyxoma Peritonei. Right now my cancer appears to be lying dormant deep within and could continue to do so for years. But equally if there is any sign of change whatsoever I want to be able to pick up in it immediately and act upon it quickly and before it’s too late. This is the tightrope I now find myself walking.</span></div>
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<span style="font-kerning: none;"> I relaid this to Linda in our conversation. There are obvious reasons as to why repeating the CT scans is simply not good for you. The contrast used doesn't do you any good and I understand that. But I still want to pick up on any potential change quickly so she suggested talking to my GP and arranging regular bloods to check the tumour markers.</span></div>
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<span style="font-kerning: none;">I’m going to mull things over and possibly talk further to the team to agree the best way forward.</span></div>
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<span style="font-kerning: none;">So YES, I’m a free man for a whole year. Christmas is coming and we have a number of family celebrations and “big” birthdays to enjoy. 2017 beckons full of opportunity and with a blank canvass to paint with memories.</span></div>
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<span style="-webkit-font-kerning: none;">“Live life now or live life never” tonight I’ll be raising a glass to you Syd!</span></div>
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Davehttp://www.blogger.com/profile/08987847582949613057noreply@blogger.com4tag:blogger.com,1999:blog-4339253742486294847.post-14940193737529743202016-10-15T08:10:00.000-07:002016-10-15T08:10:11.278-07:00CT Scan<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 11px; line-height: normal; min-height: 13px; text-align: center;">
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<span style="font-kerning: none;">All too quickly our summer came to an end and so with it ended the dream we’d been living and we came back to reality with a bump. I still have Pseudomyxoma Peritonei and this scan will determine what we do next.</span></div>
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<span style="font-kerning: none;">So on Wednesday 12th October we found ourselves following the same familiar routine; up early for breakfast (I’m not allowed to eat four hours before the scan) and then the hour and a half drive to Basingstoke and North Hampshire hospital.</span></div>
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<span style="font-kerning: none;">First to the bloods clinic for the Pseudomyxoma blood tests and tests to confirm that I am OK to go ahead with the CT scan.</span></div>
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<span style="font-kerning: none;">Next to the CT department and the usual black current flavoured dye. Most is consumed over the forty five minute period directly before the scan, the final bit immediately prior.</span></div>
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<span style="font-kerning: none;">I was soon ushered into the changing cubicle and changed into my hospital gown. Next to the dentists type chair used by the nurses to insert the cannula that would transfer the contrast dye into my blood stream then on to the CT scanner itself.</span></div>
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<span style="font-kerning: none;">The hospital was unusually buzzing with excitement today as Prince William was due there shortly to speak in the Ark centre. No one knew exactly what time he was due but the staff were all eager to catch a glimpse of their royal visitor.</span></div>
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<span style="font-kerning: none;">I led on the scanner, the familiar beige and white sight of the circular scanner around me, the inner workings spinning quietly dissecting me into detailed X-ray images. Looking quietly but intently deep within me for the disease lurking inside. The contrast soon delivered through the cannula I felt that warm flush that radiates through the body and then the bed moved through the scanner. I closed my eyes and listened to the familiar voice instructing me to “ breathe in…………….hold your breath…………and breath out”. Once again the future is no longer in my hands…..</span></div>
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Davehttp://www.blogger.com/profile/08987847582949613057noreply@blogger.com5tag:blogger.com,1999:blog-4339253742486294847.post-44399903201130716072016-09-25T08:26:00.000-07:002016-09-25T08:26:06.505-07:00“Life is now or life is never” Syd Scroggie<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 13px; line-height: normal; text-align: center;">
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<span style="font-kerning: none;"> Syd Scroggie was a Scottish walker, but he wasn't just any walker, he was remarkable man. Born in Dundee in 1919 Syd as a teenage boy would cycle 40 miles to Glen Cova to walk in the Cairngorm Hills. In 1945 Syd was seriously injured when he stood on a German landmine loosing both his sight and one leg. But that didn't stop him, his love of the mountains was so strong that he was determined to continue his passion for walking. He made over six hundred trips into the mountains afterwards with the aid of a walking companion, a large stick and his artificial leg wrapped in a plastic bag to keep the rain out! Syd was a self taught greek scholar and a poet and in his poem Time he wrote “Life is now, or life is never”.</span></div>
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<span style="font-kerning: none;"> Its a line that struck chords with me. I am lucky enough to have my sight to allow me to take in the views and appreciate the world around me. I am lucky enough to have all of my limbs to allow me to easily traverse the paths ahead without giving it a second thought. But I feel like I truly understand exactly what Syd was saying in his poem and I share the same beliefs. For me time isn't something you can take for granted. Living with a third diagnosis of Pseudomyxoma and with the reoccurrence in such a difficult place to operate on I know that at some point my very best option is likely to be another huge operation. I know that playing the “watch and wait” game is a gamble. Will we simply come to a point where we decide that it’s time to face another operation or will it spread to a point where it becomes inoperable? Who knows?</span></div>
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<span style="font-kerning: none;">With the decision at the beginning of the year not to operate and undergo a Whipple procedure at this stage we agreed that a repeat CT scan in the Autumn was best and we’d see how/if things had changed and review how to proceed at that point. This lifted a huge weight off of our shoulders and allowed us to enjoy the summer ahead.</span></div>
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<span style="font-kerning: none;">The weather has been very kind and we have been out and about enjoying family time together. Days out at the seaside, walking in the Brecon Beacons and a great day at Monkey world in Dorset. All have allowed me to continue my passion for amateur photography and also satisfy my love for the outdoors. Days have been spent fishing as well as walking and I have made a tentative return to running after a minor back operation and an 18 month break. I felt well, I felt fit and healthy, I even made the comment recently to Tracey that for the first time since I can remember “Life actually felt as it did pre-Pseudomyxoma”.</span></div>
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<span style="font-kerning: none;"> For me our days out are also about making memories, trips to beautiful places and taking in amazing sites is something we will all remember for a very long time. Like our recent visit to “waterfall country” in the Brecon Beacons. Walking behind the wall of water crashing over Sgwd-yr-Elra on the Four Falls trail and a beautiful walk at Blaen-y-Glyn.</span></div>
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Sgwd-yr-Elra, Four falls trail</div>
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Sgwd-y-Pannwr, Four Falls trail</div>
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<span style="font-kerning: none;">Blaen Y Glyn</span></div>
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<span style="font-kerning: none;"> This summer I have also had the real satisfaction of seeing my girls growing in to adults. Jess has done extremely well in her first year at university and is working part time. Chloe did very well in her GCSE’s securing her place at college, securing a work placement at a local community farm and bagging a Saturday job all in the space of a week. It’s been an amazing time and I’m a very proud dad!</span></div>
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<span style="font-kerning: none;">But as the summer wore on I became increasingly aware that CT scan time was looming. It seemed to edge it’s way to the front of my mind as time slipped by despite me almost completely forgetting about it at the high points of the summer. As the days shortened the clouds gathered on the horizon as reality crept ever nearer. Ironically, on the first day of the meteorological autumn a letter dropped through the door like a lump of lead with an appointment for my scan. The dream I’d been living was over. </span></div>
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<span style="font-kerning: none;">Wednesday 12th of October will see us back at Basingstoke for the scan. Time to “spin the PMP wheel of fortune” once again. If nothing has changed then it’s likely that I may not be required to go back for another year. If things have changed then it will be one of two path’s I guess, either another operation or…..well, lets not think about that… </span></div>
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<span style="font-kerning: none;">So I have more walks planned; a trip in to the mountains to walk a circular route near Pen Y Fan, I also have more caving planned and want to continue with my running and swimming and of course time with the family as like Syd said “Life is now or life is never”…….</span></div>
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Davehttp://www.blogger.com/profile/08987847582949613057noreply@blogger.com3tag:blogger.com,1999:blog-4339253742486294847.post-55229758126308645422016-08-14T06:54:00.000-07:002016-08-14T07:17:06.309-07:00Keep calm and carry on...<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 13px; line-height: normal;">
<span style="font-kerning: none;">So here we are now well into August and the summer rapidly disappearing before our very eyes. Soon the long hot days will give way to the golden browns of autumn before winter finally and inevitably holds the land tightly in its silent, blue death grip.</span></div>
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<span style="font-kerning: none;">The summer for me has been great. The “watch and wait” decision after my last CT scan freed me from the shackles of Pseudomyxoma for a few brief months and I have grabbed the opportunity with both hands.</span></div>
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<span style="font-kerning: none;">We have had some great days out as a family, walking in the Forest of Dean and in the Mendip hills. Days at the seaside at Weston Super Mare and meeting family for rounders on Frenchay common. We have met friends for drinks by the river and attended local festivals. We have a week off soon with lots more great days out planned and Tracey and I celebrate our 20th wedding anniversary at the end of the month!</span></div>
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The Forest of Dean</div>
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<span style="font-kerning: none;">For the first time in a while I have had no health issues hanging over me. My back has recovered well from the operation nearly a year ago and the fourth anniversary of my second de-bulking surgery at Basingstoke hospital has just passed.</span></div>
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<span style="font-kerning: none;">Since January I have been swimming 1000m twice a week on my lunch break and only in the last few days been given the OK by by GP to try some running again. I’ve enjoyed days out fishing, relaxing in my favourite spot on a beautiful quiet lake just up the road. My little bit of paradise. I’m ready to return to some proper caving. I feel well, I feel alive, I feel like my old self before Psuedomyxoma.</span></div>
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<span style="font-kerning: none;"> My little piece of paradise.</span></div>
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<span style="font-kerning: none;">But part of me feels like I’m living a lie. I’m reluctant to let myself get lured into false hope that things are returning to normal, that I can be normal, that we can live a normal carefree life as a family. Because behind this facade of happy summer days, deep in the darkest recesses sits a 7mm long demon, resting quietly, biding its time, hugging my bile duct.</span></div>
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<span style="font-kerning: none;">Who knows how long it will be before we have to tackle this demon head on again? My up coming CT scan in October will no doubt tell us if we can continue to enjoy life or if we once again have to prepare for more treatment. I look around and see so many people around me fighting this disease, some doing well, some not so well and some despite putting up the bravest of fights succumbing to this awful disease;Pseudomyxoma Peritonei. </span></div>
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<span style="font-kerning: none;">So for now, with the final throws of summer still to enjoy and with the CT scan in October looming fast its a case of “keep calm and carry on…”. For who knows what the future will hold?</span></div>
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Davehttp://www.blogger.com/profile/08987847582949613057noreply@blogger.com10tag:blogger.com,1999:blog-4339253742486294847.post-70465237181820685462016-06-18T14:52:00.002-07:002016-06-18T14:53:25.008-07:00Dawn Green...a tribute<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 11px; line-height: normal;">
<span style="font-kerning: none;">I first met Dawn through the Christies Pseudomyxoma forum back in late 2009 just after I was first diagnosed with PMP. At that time it was the place to go on the web. There were no Facebook groups and there was no Pseudomyxoma Survivor website. This is what prompted me to write my blog. Sadly the Christies forum it appears has recently been removed, i suspect through lack of use now that the Facebook groups seem to have taken its place.</span></div>
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<span style="font-kerning: none;"> There were far fewer of us active on the site as there are in the groups nowadays and sadly we have lost a few of the original group members to this awful disease. Chris B, Graham Davies and now Dawn.Dawn was an active member way back then and her determination to make a difference was evident even then.</span></div>
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<span style="font-kerning: none;"> Dawn soon teamed up with Angela Brook and started creating the Pseudomyxoma Survivor Charity that we all know today. I was lucky enough to be involved with them both in helping to set up the buddying system that they offer to those who need it. We held discussions on Skype on a few occasions (often when I was at work on my lunch break!) to discuss ideas and how to practically make it work.</span></div>
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<span style="font-kerning: none;">I finally got to meet both Dawn and Angela in person at the first ever International Psuedomyxoma patient forum held at Basingstoke Hospital on the 13th May 2013. It was a great day where I was privileged to talk at the forum along with Dawn and Dr Amani Albedah. Just two weeks before Dawn was given the news that there were no longer any surgical options for her and it was inspiring to see her take the stage and talk so passionately about the charity she had created. At the end of Dawns speech she was met with a round of applause and I was sat next to Paul Sugarbaker and clearly remember hearing him remarking above the sound of the applause “such a brave lady”. And indeed Dawn was, it must have taken a huge amount of strength and resolve to get up there in front of all those people and talk so passionately about the charity given the news she had recently been given.</span></div>
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Dr Amani Albedah, myself, Brendan Moran, Dawn Green & Tom Cecil</div>
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<span style="font-kerning: none;"> That evening we were all invited to a black tie event commemorating the 1000th Pseudomyxoma patient to be treated at Basingstoke Hospital. With a live band and the men dressed in their penguin suits and ladies in their cocktail dresses it was a great evening and we danced the night away. Tracey and I sat with both Dawn and Angela and I remember Dawn being so full of energy and constantly nipping off to talk to people and circulate the marquee. Tracey and I tired from the long day retired and left them all dancing away….</span></div>
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<span style="font-kerning: none;">Dawn continued to work hard at the charity and travelled far and wide meeting fellow patients, attending events and offering support wherever she could. With the charity growing, more help was required and a number of trustees joined to help keep things running. More recently with Dawns health sadly deteriorating it was clear that it was all becoming very hard work for her and ultimately she decided to step down as the CEO. A step Im sure that she must have found extremely difficult indeed knowing just how much she lived and breathed the charity. It needed to be done though, it was time for Dawn to concentrate on herself and her two daughters who she loved so much.</span></div>
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<span style="font-kerning: none;">Dawn did what so many of us only thought about doing whilst battling this awful disease and created a fantastic Charity that has, and continues to support so many patients and carers around the globe who face the devastating news that they or a loved one has Pseudomyxoma Peritonei. Through the darkest of times the charity offers help and support when people need it most and brings light to the darkness.</span></div>
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<span style="font-kerning: none;">Dawn has left a legacy to be proud of and we will miss her big smiles and selfies with Chico. Our heart goes out to her family at this difficult time. </span></div>
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<span style="font-kerning: none;">As I write this I have been listening to Pink Floyd's Endless River album. As I finish the post the album is drawing to a close, the last track is called "louder than words" and seems very fitting. For what Dawn did for so many people was indeed louder than words... this ones for you Dawn!</span></div>
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<span style="font-kerning: none;">Rest in peace Dawn….</span></div>
Davehttp://www.blogger.com/profile/08987847582949613057noreply@blogger.com2tag:blogger.com,1999:blog-4339253742486294847.post-33856748184859617962016-05-15T13:25:00.000-07:002016-05-15T13:25:03.440-07:00Results....<div class="MsoNormal">
<span lang="EN-GB">We had a
letter from Basingstoke arrive recently with the results of my CT scan. It
arrived just two weeks after the scan which is much quicker than we have been
used to historically and was much appreciated. “Scanxiety” isn’t pleasant and
the longer you wait the more it builds.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">It was good
news; the scan had shown no change whatsoever to the areas of concern on both
my kidney and the area near the liver. My tumour marker blood levels also “remain
fine”.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">The next
step is to repeat the CT scan again in October and if this shows everything
remains stable then the scans will revert back to yearly for the time being.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Obviously
we were very pleased with the news. It’s the best it could have been and means
that we now have the whole summer ahead of us to enjoy. We can now make plans
for days out and even book some holidays!<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">It still
feels strange knowing that the Pseudomyxoma still lurks deep inside me, sat
there dormant, waiting for the right moment to show its ugly head once more.
Who knows just how long that will be, months, years or even longer? I guess it
has its own grisly plan.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">But for now the baron wasteland that was 2016 at the start of the year suddenly promises so much more.I feel well and I’m going to make the most of it! I’m still keeping fit and
swimming a kilometre twice a week on a lunch break. I have also been walking a
fair bit and last weekend did a ten mile walk in the Mendip hills. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Jon and I
started at the car park at the top of Velvet bottom and then walked via the
Longwood Valley and past the Longwood August cave system (one of my favorite Mendip caves) to Black rock at the head of the Cheddar Gorge.</span></div>
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Jon in the Longwood Valley</div>
<br />
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Carpets of Bluebells</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">From here we
took the steep climb up the right hand side of the Gorge as you head down and
walked the cliffs. We were treated to stunning views and clear blue skies.</span></div>
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Jon on the cliff path</div>
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Caves!</div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB"> The
path then lowered steeply with caves to our right and we made our way down into Cheddar for a well
earned pint of Cheddar Valley cider and a Ploughman’s lunch. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">We then
headed back up the very steep climb to the top of the cliffs on the other side
of the gorge stopping for a quick chat with a group of ladies who were walking
in aid of Macmillan cancer and training for a walk along the Jurassic coast in
a few weeks time (of course I made a donation!). By this time it was about 24 degrees and the warmest day of
the year so far.</span></div>
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Brent knoll lurking in the haze in the distance.</div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB"> We continued up the cliffs and crossed over at the head of the
gorge to pick up Velvet bottom and our
route back to the car. I saw my first adder (three in fact!)in the wild all
with their beautiful black zig zag markings on their backs and lightning quick!
We also found slow worms hidden in the grass which took me back to my childhood. <o:p></o:p></span></div>
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<div class="separator" style="clear: both; text-align: center;">
Slow worms</div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<br />
<div class="MsoNormal">
<span lang="EN-GB">In all it
was a great day in fantastic surroundings and it felt great to be alive....<o:p></o:p></span></div>
Davehttp://www.blogger.com/profile/08987847582949613057noreply@blogger.com1tag:blogger.com,1999:blog-4339253742486294847.post-5587362947294897082016-04-09T12:35:00.000-07:002016-04-09T12:35:15.906-07:00Cracking On.....<div class="MsoNormal">
<span lang="EN-GB">People
often say “I don’t know how you keep going....you are so brave.....” or you’re
a real inspiration”. But I really don’t believe that is the case. I’m simply
cracking on. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB"> When you are diagnosed with cancer you go
through a roller-coaster of emotion. At
first the shock of the news is as you would expect, truly devastating. It’s
like someone, somewhere turns out a light and you are surrounded by complete
darkness and numb to the core. You have so many unanswered questions, pent up
anger and frustration and that single question rings in your mind constantly; “Why
me?”<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Then, as
the weeks slip by you become used to the reality that you have this thing
inside you and things become a little easier. Your treatment path becomes apparent;
there is a structured plan from the team treating you and you start to
understand what lies ahead and can start to mentally prepare. With Psuedomyxoma
the fact that it is so slow growing means that in many cases it can take weeks
or even months for the plan to become clear, often after a number of CT scans
and blood tests to measure how the disease is progressing.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">So in that
time between scans an appointments and treatment how do you carry on?<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">For me this
is now the third time that I have found myself in this predicament. I guess as
I have ridden the PMP roller-coaster twice beforehand I know what to expect.
I/we have become very adept at compartmentalizing things and locking them away
in a drawer at the back of our minds. But I do recognise that you have to be
careful, it’s good to open this drawer from time to time and let out any pent
up pressure that may subconsciously be building up inside. It’s dangerous to
get complacent and kid yourself that everything is under control. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">I also
strongly believe that a positive mental approach is key to this battle. I like
to keep myself as busy as possible and carry on living life as normally as can
be expected. I have said before that work is my rock. I’m lucky that I enjoy my
job. It keeps me very busy and it’s good to feel that I’m making a positive
difference. It also keeps my mind occupied. Similarly, my weekends are always
pretty busy. When you work five days a week those two days off are precious and
fly by so quickly. For me the best feeling on a Monday morning is to return to
work feeling like you have done something productive with your weekend. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">I am also
certain that keeping fit and healthy is also very important and prepares you
and your body for the battle ahead. It’s also good for the mind and maintaining
that positive mental attitude. Keeping the cardiovascular system in the best
shape you possibly can and the body as strong as possible puts you in the best
place possible to face any upcoming treatment or surgery.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">My next CT
scan is scheduled for 18<sup>th</sup> April at Basingstoke and North Hampshire
hospital. Realistically even after the scan has been done I don’t expect to
hear anything for at least a month. At our last meeting we were told that as
well as the radiologist report having to be completed the team will want to
discuss the results and decide what to do next?<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB"> I’m guessing it will go one of three ways. If
the scan shows no change whatsoever then I fully expect to be told that for now
we again do nothing and simply book in another CT scan for six months time. If
the cancer has shown signs of growth then the second option will further
surgery or possibly chemotherapy. Surgery could mean one of two procedures as I
have previously posted, both of which are big surgeries. The third option is
the one that all Pseudomyxoma sufferers’ dread; that no further surgical
options are available. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">So for now,
as I say I have simply been cracking on and living life. It would be easy to
feel sorry for myself and disappear down a big black hole but for me that’s simply
not an option. So I have been continuing to work hard and do the things that I
enjoy doing. I continue to go caving. Below is some footage to a recent trip
into Swildons Hole on the Mendip Hills!<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
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<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB"> As my surgery on my back has put paid to my
running I am now swimming twice a week instead and really starting to enjoy it.
Tracey has kept me busy at the weekend and we have been re-modelling the front
garden. She has been very patient as I have been threatening to do it for the
last three years!<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<br />
<div class="MsoNormal">
<span lang="EN-GB">So I don’t think
that I’m “brave” or an “inspiration”. I’m simply doing what every other cancer
sufferer in the world is doing. The only thing we can do. Cracking on because
we have no other option...<o:p></o:p></span></div>
Davehttp://www.blogger.com/profile/08987847582949613057noreply@blogger.com1tag:blogger.com,1999:blog-4339253742486294847.post-57655433000484961962016-02-06T14:21:00.001-08:002016-02-06T14:21:57.532-08:00Friday 29th January 2016- A Meeting at Basingstoke.<div class="MsoNormal">
<span lang="EN-GB">On Friday
29<sup>th</sup> January 2016 at 11:30am we met with Tom Cecil, Ben Cresswell
and Vicky Evans. As we entered the meeting room I felt I was taking my first
tentative steps into the frozen wasteland that is 2016. Testing the ice
carefully to see what the immediate future may hold?<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">We knew
going into the meeting that the scan in August had shown two areas of concern.
One on the right kidney that had not changed in size since the scan the year
before and another that had grown and was situated around the <a href="https://en.wikipedia.org/wiki/Porta_hepatis" target="_blank">porta hepatis</a>,
close to the bile duct and pancreas.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Some
discussion had previously been had about the possibility of another operation. Correspondence
suggested that there were a couple of procedures that could be done; either the
excision of the bile duct or a <a href="https://en.wikipedia.org/wiki/Pancreaticoduodenectomy" target="_blank">Pancreatoduodenectomy</a>. Both options are considered
major surgery.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Surgery to
remove bile duct cancer is often done in two parts. <a href="http://www.general.surgery.ucsf.edu/conditions--procedures/portal-vein-embolization-(pve).aspx" target="_blank">Portal vein embolisation</a>
(PVE) is a smaller procedure usually done a month or so prior to a resection or
hepatectomy. As the liver is the only
organ that is able to grow back this procedure aims to shrink the area affected
by the cancer which in turn encourages the healthy part of the liver to grow
further and compensate thus preparing the way for second surgery which may involve
removing affected areas of the liver (<a href="http://www.cancerresearchuk.org/about-cancer/type/liver-cancer/treatment/surgery/which-surgery-for-liver-cancer" target="_blank">lobectomy</a>).<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB"> A Pancreatoduodenectomy (Whipple procedure) is
major surgery. The surgeon usually removes the bile duct containing the cancer,
part of the liver, the gall bladder (mine has previously been removed) and
nearby lymph nodes. Part of the Pancreas and small bowel may also be removed.
The aim is to get a clear margin of tissue around the area where the tumor was
found. There are also a number of major arteries located in the area that must
be avoided.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB"> Any operation would be considered a “trial dissection”
in other words if when opened up the
surgeon didn’t like what he saw then he may take the decision to simply stop
and sew me back up again.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB">After a
long discussion regarding the options we agreed that for now we do nothing.
Another CT scan will be booked for April along with bloods and we would see
what the results tell us.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB"> There are a number reasons for coming to this
decision-<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB"> Firstly, whilst there are areas of concern
that appear on the CT scan my <a href="https://en.wikipedia.org/wiki/CA19-9" target="_blank">CA19-9</a> (tumour markers) remain normal. It is
possible that what we are seeing on the scan isn’t actually Psuedomyxoma and
possibly scar tissue or other abnormalities. Tom Cecil likened it to “chasing
shadows”.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB"> Secondly, as stated above the operation
required is big and not without risk. Only a few previous operations have been
done, all had a complication of some sort or another (but it’s good to hear all
patients are now doing OK). The most common complications include; leakage of
bile, fistula, liver failure, infection, bleeding and heart problems. There are
also a number of possible side effects including diabetes. There is also “the
potential for significant morbidity and mortality”, it’s not a decision to be
taken lightly. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Thirdly,
right now I’m very well and keeping fit. I am suffering no ill effects and my
quality of life is good. There is a chance that even if this is a reoccurrence
it could remain stable for several years before requiring intervention. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">So for now
we have a reprieve pending the results of the scan in April. Then I guess we
revisit the above all over again.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB"> I have spoken to a number of friends and
fellow PMP survivors since the meeting. The common thing that they all say is
that they feel the outcome was a good result. I guess it is but from where I’m
standing I’m not really sure. Yes, I don’t have to have any surgery in the
immediate future. Yes, there is an outside chance this may not be a reoccurrence
(although I’m not convinced). But I can’t help thinking that if this is
Pseudomyxoma, if it is a reoccurrence then the longer it sits inside of me the
more chance there is of it growing and spreading. What if it reoccurs somewhere
where there is no surgical option? I guess this is the thin ice on which I
walk.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB"> A close friend said that the Whipple procedure
sounds like something to do with ice cream! I now have this image in my head of walking
into the next meeting with Tom and Ben and if we decide that I do have to go
ahead with the Whipple procedure then I respond with <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">“In that
case can I have it with strawberry sauce, hundreds and thousands, a chocolate
flake and a great big dollop of clotted cream on the top”! <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Steve, I
just know I’m ‘gonna have a fit of giggles at my next appointment, thank you!<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<br />
<div class="MsoNormal">
<span lang="EN-GB">Oh, and I
was driving home last week listening to Frank when this song came on, made me
smile, think it’s going to be my new Pseudo theme tune! Enjoy...<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/C1AHec7sfZ8/0.jpg" src="https://www.youtube.com/embed/C1AHec7sfZ8?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
Davehttp://www.blogger.com/profile/08987847582949613057noreply@blogger.com1tag:blogger.com,1999:blog-4339253742486294847.post-87840284471600233752016-01-19T11:48:00.001-08:002016-01-19T11:49:38.306-08:002016 a New Year and a new challenge...<div class="MsoNormal">
<span lang="EN-GB">With the mental barrier that was Christmas
now well out of the way, the very real prospect of again doing battle with
Pseudomyxoma Peritonei and another stay at Basingstoke looms large in my mind.</span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">The only analogy that I can use to describe
how I feel about the prospect of traversing 2016 is that I feel like a man
stepping onto a frozen lake. In the distance I can just make out the faint
silhouette of the shoreline through the mist and spin-drift but to get there I
have to cross the frozen wilderness with the very real danger that I could drop
through the ice at some point in my journey. Sounds like a scene from Dante’s Inferno, in this instance the devil watching on is Pseudomyxoma Peritonei!!</span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSoFDQfI2Vmw3B1LTSVDGikR2GLR1tn8OwUxgjnuKjby-IjrXM7R-HGSgOVoZzMefZvFQfxyHD5Dxw6U316GWNLlznPGwZLsrqvd0kBHPMQjwlttuo5MqcQ_-fmsutLh23R1dmGHO3gEmw/s1600/Gustave_Dore_Inferno_34_caption.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSoFDQfI2Vmw3B1LTSVDGikR2GLR1tn8OwUxgjnuKjby-IjrXM7R-HGSgOVoZzMefZvFQfxyHD5Dxw6U316GWNLlznPGwZLsrqvd0kBHPMQjwlttuo5MqcQ_-fmsutLh23R1dmGHO3gEmw/s320/Gustave_Dore_Inferno_34_caption.jpg" width="320" /></a></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">The Christmas break was subdued, it became
clearly apparent that this re-diagnosis is affecting the family far more than
any other has done in the past. Tracey is keeping a brave face but is worried,
that much I can see. Jess and Chloe are that bit older now and understand far
more about my situation. Before we could “protect” them from what was going on
around them but not this time.</span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB"> I
too have found myself thinking about things more, even dreaming about it. I
can’t help but wonder how many times we have to go through this? Will it ever
stop? There also has to be a limit to how many times this type of surgery can
be done, be it my body’s ability to cope or whether or not surgery is an option?
With every surgery I go through the odds must stack higher against me.</span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB"> At
present it does look like surgery is an option. However this surgery could be
another very big operation depending on what the surgeon finds when he opens me
up. I also wonder at what life might be like post op. So far I have come
through each operation relatively unscathed. Hopefully it will be the same this
time around…</span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">The latest news is that I have an
appointment at Basingstoke and North Hampshire hospital on the 29<sup>th</sup>
January. At this appointment we will meet with Ben Cresswell. Ben often works
with the Psuedo team and on the Hospital website it states </span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">“<i>He
is a specialist in surgery for liver and pancreatic cancers and also has an
interest in complex multi-organ resections for cancers that have spread
elsewhere within the abdomen (such as the lymph nodes and soft tissues).<o:p></o:p></i></span></div>
<div class="MsoNormal">
<i><span lang="EN-GB">He
has a research interest in keyhole surgery, critical care and cancer treatment
and also has a keen interest in education. He is a past-president of the
Association of Surgeons in Training and a past council member of the Royal
College of Surgeons of England and the Association of Surgeons of Great Britain
and Ireland.”<o:p></o:p></span></i></div>
<div class="MsoNormal">
<i><span lang="EN-GB"><br /></span></i></div>
<div class="MsoNormal">
<span lang="EN-GB">I am hoping that at the meeting we will
learn exactly what the plan is and when I can expect the surgery? This way we
can start to plan around it.</span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">In preparation for my hospital stay I am
again focusing on getting fit. Whist I am no longer able to run because of the
surgery on my back last year I have now started swimming twice a week and
hitting the gym as often as I can. My goal is to get my cardiovascular system
in as best shape as possible, build strength and generally be as healthy as I
can before being admitted.</span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<span lang="EN-GB" style="font-family: "calibri" , "sans-serif"; font-size: 11.0pt; line-height: 115%;">So for now I just have to wait until the 29<sup>th</sup>
to see what will happen….</span>Davehttp://www.blogger.com/profile/08987847582949613057noreply@blogger.com4tag:blogger.com,1999:blog-4339253742486294847.post-46472175325500835732015-12-24T08:36:00.002-08:002015-12-24T08:36:36.388-08:00Merry Christmas<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXt4xSv5FWHRPe6DkMnRcftGMzNREHsVDlyJA3XOh_GYsqrYWjRdvzW4HWNzRtgayZgVlRuAUZ0oY-ghCao6D9XanyyEItXAlV-1af6zpENPbepBBMzWPCvFgm7_tyVoc7hkhA4zCKN0sb/s1600/IMG_3829.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="255" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXt4xSv5FWHRPe6DkMnRcftGMzNREHsVDlyJA3XOh_GYsqrYWjRdvzW4HWNzRtgayZgVlRuAUZ0oY-ghCao6D9XanyyEItXAlV-1af6zpENPbepBBMzWPCvFgm7_tyVoc7hkhA4zCKN0sb/s320/IMG_3829.jpg" width="320" /></a></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">So another eventful year has passed and we
find ourselves in the festive season with a New Year looming. For me the 2015
started full of promise, I planned to get more caving done, more fishing done
and generally enjoy the outdoors. Unfortunately fate had other ideas and the
prolapsed disc I suffered in March meant that most of the summer and good
weather had passed before I was fixed in late August/ early September.</span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Next followed the bad news from my annual
CT scan that for the third time I faced another positive diagnosis for
Pseudomyxoma Peritonei! Whilst we are all becoming pretty thick skinned and
used to dealing with this kind of news the initial reaction is still exactly
the same as the first time I was diagnosed. I have become good at
compartmentalizing my emotions, knowing that I won’t hear anything more
regarding what the plan is for treatment until the New Year I have locked this
away in the back of my mind and will only open the drawer when I need to. Day
to day life continues, my work keeps me very busy which helps and I fully
intend to enjoy this Christmas at home with the family and worry about what
might be in the New Year.</span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB"> That
said, a third diagnosis chips away at the resolve of even the strongest of us.
Will I ever beat this awful disease or is my fate only following one course?
Looking at communication between the various consultants at Basingstoke
Hospital early indications are that surgery is an option in my case. So good
news and bad news. Good news that there does appear to be some treatment
available for me but the operation again would be a big one with all the
associate risks and the uncertainty of what life would be like post op. Of
course, things could change depending on the findings of the more detailed MRI
or further down the line what the surgeons find when they go in. We’ll worry
about that when the time comes.</span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">So for now, the next few days are all about
enjoying Christmas and time with the family. It’s about appreciating what we
have around us and those that are closest to us. There are many more people out
there far worse off than ourselves whether it’s facing a terminal illness,
homelessness, our homes flooded at Christmas or spending it in a refugee camp
in Europe. So when your sat enjoying your Christmas dinner, exchanging gifts or
sipping a sherry in front of the fire, stop, take a breath and look around you
and be thankful. For that is what Christmas is really all about.</span></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
<span lang="EN-GB">Merry Christmas and a happy New Year to you
all!</span></div>
Davehttp://www.blogger.com/profile/08987847582949613057noreply@blogger.com0tag:blogger.com,1999:blog-4339253742486294847.post-73327328037333646312015-10-24T08:47:00.001-07:002015-10-24T08:47:46.204-07:00“Scanxiety”; the wait for results and the final outcome...<div class="MsoNormal">
<span lang="EN-GB"> I have seen a number of times now discussions
on different forums about the length of time it takes for patients to receive their
results after a CT scan. Historically I have usually crumbled and after a few
weeks succumbed to the pressure and phoned the Hospital to obtain the results
rather than await them to contact me.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">In the period
post annual CT scan, time spent waiting for results can be a scary one. As time
passes and the days and weeks go by “Scanxiety” (scan-anxiety) as we call it in
the PMP world sets in. This year having seen the discussions on the forums I
was determined to wait and see for myself just how long it took to receive the
results.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">On looking
into why it may take so long to get results I came across a piece by The Guardian.
It states that there is a huge shortage of radiologists in the UK with only
around 45 radiologists per million people. That’s nearly as rare as
Pseudomyxoma itself!<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">A recent
survey by The Royal College of Radiologists conducted on the 16<sup>th</sup>
October found mixed results in NHS radiology departments. Whilst some faced no
delays other has major issues. “It found that 81,137 X-rays and 1697 CT and MRI
scans had not been examined for at least 30 days, even though the expectation
in the NHS is that such potentially vital diagnostic tests should be examined
within a week”<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB">“ This
reflects the national picture ...and about 6000 patients have waited more than
a month for the results of CT and MRI scans” the college said.<o:p></o:p></span></div>
<div class="MsoNormal">
<i><span lang="EN-GB">Source-The Guardian<o:p></o:p></span></i></div>
<div class="MsoNormal">
<i><span lang="EN-GB"><br /></span></i></div>
<div class="MsoNormal">
<span lang="EN-GB"> I am not saying that this is the case with
Basingstoke Hospital in any way, my care has always been second to none by the
team there but it does give a picture of what is happening nationally within
the NHS.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<b><span lang="EN-GB">Scanxiety diary.....<o:p></o:p></span></b></div>
<div class="MsoNormal">
<b><span lang="EN-GB"><br /></span></b></div>
<div class="MsoNormal">
<b><span lang="EN-GB">Week 1-</span></b><span lang="EN-GB">Commencing Sunday 13<sup>th</sup> September.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Scanxiety
level-0 (0=low-10 is high).<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">The first
week for me is an easy one. You know that you won’t hear anything regarding
your results and so it’s business as usual, it’s easy to compartmentalise the
thoughts at this point. If you ask the staff at the CT scanner they will usually
say that results take around 10 days to get to you. From history I know that it’s
more like 3 weeks to a month. My experience has been if you get a letter
through the post then generally its good news, a phone call-not so good. This
is now my fifth annual scan since my first Cyto-Reductive Surgery (CRS) in 2010
and third since my de-bulking surgery in 2012. For now I am PMP free, with the
results not coming anytime soon I am enjoying blissful ignorance.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB">However,
life has a way of giving you subtle reminders that things are not all as they
seem. Well meaning friends as “How did it go?” or “any news?” just a reminder
that you may be existing on borrowed time so to speak. I have also had other
subtle reminders. Not sure if it’s just the subconscious at work picking out
things that you would normally ignore but this week but I was analysing a table
of over 39K addresses in Excel and guess where the address was at the top of
the table? ...Basingstoke! Also,on the way home I was parked at traffic lights
in Bristol, the car in front was a Skoda. It was sporting a sticker in the back
window advertising the garage where it was bought from; Jacksons of
Basingstoke! Subtle reminders....!!<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB">I guess subconsciously
I must be thinking about it as I rang the specialist nurses this week to give
them my new mobile number too...just in case...<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<b><span lang="EN-GB">Week 2-</span></b><span lang="EN-GB">Sunday 20<sup>th</sup> September<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Scanxiety
level-0-2<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Started the
week with some fishing! Had an enjoyable day at my favorite haunt on Sunday 20<sup>th</sup>.
Monday saw the start of the working week and I guess the possibility that I could
hear something back from the end of this week. My behavior has changed
slightly too. I am ensuring that my mobile phone is not on silent and always
within reach, just in case... The guys in work asked me about it again this
week, I replied that I hoped I wouldn’t hear anything as the weekend coming we had a family
holiday booked in west Wales and I didn’t want any results to potentially spoil
it. Work has been extremely busy and helps to keep my mind occupied so I don’t think
about the results and “Scanxiety” remains low. However as the week has
progressed the level has risen from a 0 to around a 2. Still low but definitely
in the background.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"> Our weekend away was fantastic! We stayed at
Pendine Sands and had beautiful weather. The resort was quiet and we walked in
the sun on the beach on the Friday. Saturday was spent at Oakwood theme park
where again it was quiet and we were able to get on any ride without queuing at
all! We went on Megaphobia ; a giant wooden roller-coaster and Speed which
climbed and fell vertically as well as loop to loops and barrel rolls! Sunday
the weather turned and we spent the day in Tenby. We got through the weekend
without any results and thoroughly enjoyed it!<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<b><span lang="EN-GB">Week 3- </span></b><span lang="EN-GB">Sunday 4<sup>th</sup> October<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Scanxiety
level 6<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">The holiday
is out of the way, back to the working week and into the danger zone. Finding
out the results is now a very real possibility. My scanxiety level and that of
the family too has raised considerably.
Each morning I wake and wonder if today will be the day when I find out,
it’s the first thing I think of. As soon as we hear the post being delivered we
are on it checking to see if it contains a letter with the Basingstoke stamp on
it?<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<b><span lang="EN-GB">Week 4</span></b><span lang="EN-GB">-Sunday 11<sup>th</sup> October<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Scanxiety
level 6<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Still no
news. I am regularly being asked if we have heard anything now by friends and
family? Mum and Dad have been away in the Mediterranean for the last two weeks
and have text me twice asking if we have heard anything. The wait does not just
affect me, it affects the entire family and its hard.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Friday 16<sup>th</sup> October. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Throughout
this week I have had a cold hanging around. Throughout Thursday and overnight
it got considerably worse with painful sinuses. Today I just couldn’t face
work. I’d been up since the early hours and felt awful. I had spent the morning
in bed and then migrated down to the sofa in the afternoon. Around 3pm the
phone rang, Tracey answered, it was Basingstoke hospital. My heart sank, I
think both of ours did. We knew this meant only one thing.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">I spoke to
one of the secretary’s who had advised that Tom Cecil wanted to see me in the
out patients clinic on Wednesday 21<sup>st</sup> at midday. I agreed instantly.
I asked what had been found on the CT scan and as she was not clinically
trained she was unable to help. She put me through to Vicki one of the
specialist nurses. It turns out that one
of the tumour markers (CA19-9) was slightly raised and they had seen an area of
fluid near the liver. Tom wanted to talk to me about the results. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">I put the
phone down just as Chloe walked in from School and into the turmoil that ensued.
We were devastated. Jess was working; I had to pick her up. I managed to keep
upbeat in the car and didn’t mention it until we were home. Everyone was so
upset, I hate that the words I speak causes the people I love the most in the
world so much pain.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">We then
proceeded to make the calls to those closest to us to break the news that once
again Pseudomyxoma was back. I couldn’t ring Mum and Dad as they were still on
holiday and not due back until the following Monday lunchtime. I made my mind
up I’d go down directly after work on Monday and shatter their world for the
third time...<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Our weekend
was a similar experience to what we have faced previously. Friday was complete
turmoil once the news was broken. The knee jerk reaction is complete hysteria
and upset, it always is. Then, the numbness sets in. You feel nothing but numb.
For me it did really take the wind out of my sails. I couldn’t believe that
recently I had actually allowed myself to look forward to the future and to make
plans. Things had been going really well and I felt great. And now, once again
we stood numb in the blackness with the future once again uncertain.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<b><span lang="EN-GB">Wednesday 21<sup>st</sup> October-Outpatient appointment.<o:p></o:p></span></b></div>
<div class="MsoNormal">
<b><span lang="EN-GB"><br /></span></b></div>
<div class="MsoNormal">
<span lang="EN-GB">We made our
way to outpatients at Basingstoke Hospital. It was busy but we were seen on
time. Vicki called us in and we made our way to the meeting room and met Tom
Cecil. We greeted each other with friendly hello’s. The team have been so good
to me here and once again I found myself in their care.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB">We quickly
got down to business. Tom explained that when the bloods are taken at the
annual CT scan three tumour markers are taken. Two out of the three for me had
come back clear but the CA-19-9 test had come back slightly raised. Any score
above 35 is considered abnormal and mine had come in at 39. To put this into
context he explained that they are used to seeing scores in the 100’s or even
1000’s. The test is also very sensitive and things like inflammation can cause
an increase. On its own it probably wouldn’t have mattered much. However, there
were also two area’s of concern on the CT scan. The first, near to the kidneys
was around 7mm long and when they looked back retrospectively at last years
scan they could see it on there. But it hadn’t changed in size at all in the
last year and there was some uncertainty as to whether or not to is mucin. The
second area was behind the portal vein that feeds the liver. This however had
changed in the last year and is around 1cm in size. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7JybDKhWlL576k96wm-ZOfDJW948xninlDPMfFJaIgtNd6JRsnFrnRabyQlwIrFEC8PvH-9HmGazyKe8nW1M9Czv0buGfa5u6vW__wrvL9SIozTAOE5vEENQiB64aPtQt87Xn_y4HNxe2/s1600/200710290855_40256_000.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="299" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7JybDKhWlL576k96wm-ZOfDJW948xninlDPMfFJaIgtNd6JRsnFrnRabyQlwIrFEC8PvH-9HmGazyKe8nW1M9Czv0buGfa5u6vW__wrvL9SIozTAOE5vEENQiB64aPtQt87Xn_y4HNxe2/s320/200710290855_40256_000.jpg" width="320" /></a></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">The hepatic
portal vein carries around 75% of the livers blood supply and is part of the
portal venous system. The hepatic portal vein carries blood from the
gastrointestinal tract to the liver which is rich in nutrients taken in by the
intestines. The liver then removes any toxins that also may have been absorbed
before being released into the systemic circulation by the hepatic vein.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">The area is
notoriously difficult to operate on we were told. It’s difficult to get at by
the surgeon and may explain why the possible re-occurrence has happened where it
has. If the portal vein is ruptured during surgery then there is a very real
chance of the patient bleeding to death on the operating table.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">The plan
agreed was that a MRI scan would be done in the New Year. This would leave a
significant amount of time between the scans to pick up any changes in size to
the areas of concern. Also, an MRI scan would produce a far more detailed
picture of what was going on and where exactly it was happening making it
easier to assess what needs doing and how soon. Tom also advised that he would
talk to a colleague who specializes in liver surgery to see what he thinks?
Apparently he is often called upon for this kind of surgery.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">We left
feeling better than we had done. We now understood the detail and what the
plans were. The news was better than it could have been and now we just have to
wait and see what the MRI brings in the New Year.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<br />
<div class="MsoNormal">
<span lang="EN-GB">But right
now, once again I have cancer, I have Pseudomyxoma Peritonei.<o:p></o:p></span></div>
Davehttp://www.blogger.com/profile/08987847582949613057noreply@blogger.com5tag:blogger.com,1999:blog-4339253742486294847.post-89678299361056001522015-09-13T09:00:00.000-07:002015-09-13T09:00:49.846-07:00Annual Scan Friday 11th September 2015.<div class="MsoNormal">
<span lang="EN-GB">So, here we
go again. This now my fifth annual scan since my first CRS with HIPEC in Feb
2010 and third since my re-diagnosis in 2012 and subsequent de-bulking surgery.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB"> We had an uneventful journey from Bristol to
Basingstoke, both weather and traffic was kind. It was an early start for us as
we had to be in the bloods clinic for 10am. Unusually there was no-one else
there and despite going armed with my fast track card I didn’t need to queue jump
as I was the first. However, I don’t think that the fast track simply allows
you to queue jump it also acts as a flag to the phlebotomist that the bloods
need to be analysed quickly as you are also due a CT in an hour’s time.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Bloods done,
we headed for Radiology and the CT scanner, now a well trodden path for us we
were soon in the waiting room well ahead of our time. Again, it was fairly
quiet. As I’d not eaten for four hours beforehand and being a habitual grazer I
was now starting to feel a tad peckish! The nurse brought out the contrast
drink bang on time at 11am and I proceeded to “drink down to the line” over the
next 45 minutes. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB"> My name was soon called. I donned the hospital
gowns and then was led to a chair where a nurse then inserted a cannula into my
right arm. Much better than the blood test where despite not feeling a thing I
was clearly going to bruise beautifully! Opposite me was an older chap who was
also getting his cannula fitted. However the nurse seemed to be having trouble
finding a suitable vein.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">I soon
found myself in the CT scanner, an old pro at this I knew exactly what to
expect, that familiar warm sensation as the iodine is injected into the
cannula. For me it starts in the back of the neck along with a metallic taste
and then quickly spreads throughout the body and most acutely felt in the groin
making you feel like you have wet your pants!<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">It was soon
all over and I was again ushered back to the chair where I had to sit for ten minutes
before having the cannula removed. Opposite the nurse had called in
reinforcements and the poor chap already had three separate plasters down his
right arm where she had failed to find a vein that would comply with her
increasing desperation to get the line in. Luckily her colleague managed it after
a little help with some warm water in a surgical glove placed over the intended
next attempt.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Dressed and
ready to go Tracey and I then headed to C2 ward to meet with Brendan Moran,
Vicki Evans and the hospital press officer. We were armed with a cheque for
£856 that was raised by my colleagues at work in a recent dress-down day the
money raised by the staff was then matched
by Nisbets Plc. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB"> We caught up with the team on C2, there were
lots of new faces as many of the nursing staff that had previously cared for me
had moved on to pastures new. The ward was full, Psuedomyxoma Peritonei
operations are now being done two every Tuesday and two on the Thursday of
every second week. The team there are certainly very busy.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB"> We posed for photos and had a quick chat with
the press officer Eloise who is also writing a short piece about our fundraising.
We also bumped into Suzanne Alves who is now busy with research, she told us
that a recent survey had been sent to 299 patients from the last six years and
had a great response from everyone. Having such a response from a large
selection of people is key to identifying meaningful trends and patterns in the
data gathered.<o:p></o:p></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJssnLhRKYG4VGKBR51kbwTFbVFbpGsEsEvggZbY7IenmjhtCcrRF1nUIc5OuqicREcnIpn3JUUui_VHgqvFDvVZhfGbN7eQDvblij-QUf5CQRATx9bW64Vpz5l0bBh4WaBtpEImesn-k0/s1600/IMG_8672.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJssnLhRKYG4VGKBR51kbwTFbVFbpGsEsEvggZbY7IenmjhtCcrRF1nUIc5OuqicREcnIpn3JUUui_VHgqvFDvVZhfGbN7eQDvblij-QUf5CQRATx9bW64Vpz5l0bBh4WaBtpEImesn-k0/s320/IMG_8672.JPG" width="320" /></a></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">We said our
goodbyes and headed back to Bristol, content that we’d been able to help in our
own small way in the battle against this god awful disease. Whether it’s buying
equipment for the ward or put towards research hopefully it will make a
difference somewhere. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<br />
<div class="MsoNormal">
<span lang="EN-GB">So now I
get to enjoy the phenomenon known as “Scanxiety” in the PMP world for the next
three weeks to a month whilst I wait for the letter or telephone call that
decides my fate...<o:p></o:p></span></div>
Davehttp://www.blogger.com/profile/08987847582949613057noreply@blogger.com0tag:blogger.com,1999:blog-4339253742486294847.post-29493271553454207402015-08-04T03:23:00.000-07:002015-08-04T04:32:59.786-07:00And Now for Something Completely Different....<div class="MsoNormal">
<span lang="EN-GB"> Having planned a full summer of activity at
the beginning of the year I had clearly set myself up for a fall of a different
kind. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB"> The spring had seen me get back underground
again with a through trip from Bath Swallet to Rods Pot in Burrington Combe, my
running was going well as I was going both further and faster and with the
promise of good weather ahead I’d purchased my annual fishing rod licence and
looked forward to peaceful days in the sun at Shakells lake relaxing and
hopefully enjoying some good fishing.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">But that
was soon to change an old nemeses of mine was about to remind me that me was
still there! Some of you may remember that at the back end of March we
experienced a couple of periods of strong winds here in the UK. During one of
these a small tree was blown over in our garden. Luckily the trunk had not
snapped but it had fallen across the path to the garden shed. It was mid-week
so I decided that I should move it out of the way to allow access until the
weekend when I would put right Mother Nature’s mischievous actions. Big
mistake! I gave the tree a shove to get it off the path and felt my back go. I
had previously suffered with a prolapsed disc just prior to my de-bulking
operation in 2012 and had a weakness there ever since.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">As the days
that followed went by it gradually got worse. At the weekend I was so bad that
I managed to get an out of hour’s appointment on a Sunday to see a GP. She
prescribed me painkillers and anti inflammatory pills to try and make things
easier. I just about managed to go to work the following day but by the Tuesday
the pain was so bad I could barely make it out of bed to the bath room. This
time the GP came to me. He upped the pain killers to include 10 microgram per
hour Buprenorphine patches as well as Gabapentin tablets.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB"> The following day things were even worse. I
actually couldn’t get out of bed at all. A call to the 111 National health
hotline saw an ambulance crew despatched to attend. When they arrive they were
initially advising that it was a bad back and that there was not a lot they
could do. At this point I was led in bed and the pain was manageable. They
advised that they would get some Entonox in that would help with the pain and
they would try and get me to the toilet but I should again take it up with my
GP. With a few hefty pulls on the gas and with the effects kicking in I tried
to stand at the side of the bed. The pain was worse than anything I have ever
experienced. Even with all I have been through with the Pseudo. I managed to
get to the end of the bed sucking on the gas so fast the valve couldn’t cope.
Then the ambulance crew advised that the bottle was empty. They managed to get
me back on to the bed and advised that they could see that I was in so much
pain that they would have to take me in. They gave me some morphine and managed
to get me into a wheelchair where I was carried down the stairs and into the Ambulance.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">At South
mead Hospitals A & E I was given more morphine. Once again led down on the
trolley I was much more comfortable. I was given an MRI scan which showed a small
prolapsed L5 S1 disc. The prolapsed disc was pressing on the nerves which was
causing all of the pain and now the top of my right leg and half of my right
foot was completely numb.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">After a
wait a doctor came in and advised that they would not be operating but could
help.Another doctor from the neurosurgery team arrived and manipulated my back
managed to get me stood up and walking and sent me home with some exercises.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">And so
commenced a miserable existence, I was only comfortable when I was either stood
up or led down, I couldn’t sit at all. I would sleep all night OK, would get up
and take a heap of tablets and pain killers, just about survive the drive to
work where I would stand at my desk that had been raised up all day long. It
got so bad that on the worse days I would go out to my car and lie on the back
seat for an hour to ease the pain. I even did two meetings led on the floor!
The journey home was excruciating, by three quarters of the way home I was in
agony. One evening (Tracey’s birthday) I got in through the front door Tracey
took one look at me and got my Dad to whisk me back out to A & E for the
third time. The nurses on the admissions desk took one look at me and took me
through there and then, another shot of morphine and the rest of Tracey’s
birthday led on a trolley in A & E. By now the Buprenorphine patches had
been increased to 35 micrograms per hour but just weren’t touching it. On this
visit the MRI was not re done which probably would have changed the outcome of
the evening’s events.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">The
following day the spinal assessment team called me, they had been trying to get
me in front of the on-call neurosurgery team at Southmead but they had advised
that because A & E had discharged me they didn’t consider me an urgent
enough case to be seen that day.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">I then saw
the spinal assessment team again who arranged for a spinal root nerve block
injection to be done. I was advised that there was a six week waiting list for
the procedure. I simply couldn’t wait that long and managed to get the number
for the admin desk to get onto the short notice cancellation list. I rang them
the following day and my name was added.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">I left it a
few days and rang them again.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB"> “But your name has already been added Mr.
Mason”<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB">“Yep, I’m
aware of that but was wondering if anything had come up?”<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB">“No I’m afraid
not”<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB">“So is
there such a thing as a same day cancellation list?”<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB">“Well you
would have to arrange to get here and someone to take you home as you won’t be
able to drive”<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB">“ I work a
few minutes down the road so getting there is not an issue, I’m sure I can
arrange a lift home at short notice”<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB">“ OK hang
on a minute let me take a look” rather abruptly....”Oh...hang on a minute...why
wasn’t I told about this...can you do 9:30 tomorrow morning?”<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB">“Yep, book
me in. I’ll be there!”<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB">It goes to
show you just need to keep pushing!<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">So I had
the procedure done the following morning. Basically the surgeon gives you a
local anaesthetic and then injects a steroid and more anaesthetic into the area
affected in the spine using an X ray machine to ensure that he is in the right
area.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB">It didn’t work,
in fact for me it made things worse.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">I finally
saw a consultant neurosurgeon just over a week later who advised I needed
surgery, a L5 S1 micro discectomy. I agreed. A follow up MRI scan had revealed
that the prolapsed disc had got considerably worse and was considered acute. Had
this been done on my last visit to A & E I would probably been admitted. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Finally the
procedure was carried out on the 24<sup>th</sup> July some four months after
all the pain started. I was lucky, I was pushed through this stage quickly and
the procedure was done at a private hospital. It was a short operation under
general anaesthetic taking around one and a half hours in total and an
overnight stay.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Three
pieces of disc were removed, one of which had a piece of bone in it which was
embedded in the nerve. It had caused superficial damage to the nerve itself and
because the nerve had been stretched for so long there was some slack in it. It
should however heal in the coming weeks and months.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Just over a
week down the line and I’m feeling much better. Still the odd pain but it hasn’t
been long since the op. I have plenty of restrictions in terms of lifting and
exercise at present but I’m walking a couple of miles or so each day. I have
follow up appointments with the consultant and Physiotherapist planned.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB">As far as
Psuedomyxoma is concerned I have three things of interest!<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoDQtNBls9t8dGc9xa657fzsTHC-lWVOWRlHq4-PyttmYwc1W5j7f74hx7AqhziCoOhQGftVyt9e6hh0E32O__2EQo2VIwpD_75T_qLQ88-dzEZObGG3VCXk5cOiXt0YMLYBhr0x60sGC8/s1600/10463025_10153435508537394_7156234112013813528_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoDQtNBls9t8dGc9xa657fzsTHC-lWVOWRlHq4-PyttmYwc1W5j7f74hx7AqhziCoOhQGftVyt9e6hh0E32O__2EQo2VIwpD_75T_qLQ88-dzEZObGG3VCXk5cOiXt0YMLYBhr0x60sGC8/s1600/10463025_10153435508537394_7156234112013813528_n.jpg" /></a></div>
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">August is
raising awareness month for Psuedomyxoma Peritonei (PMP) with the Pseudomyxoma Survivor team so please share this
with as many people as possible. Two to three people per million per annum are
diagnosed with this rare and devastating cancer. Because it’s so rare the
patient often finds themselves being the expert when talking to GP’s as they
have simply never heard of it. Exactly this happened to me on several occasions
recently when talking to the doctors regarding my back in the story above. Some
of whom I know then went away and looked it up and even read my blog! That’s
why it’s important that we keep shouting about it as what chance does an
un-diagnosed patient have when presenting to their GP with symptoms?<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB"> At my work place we recently did a dress down
day in aid of Basingstoke Hospitals Pseudomyxoma and colorectal cancer trust
fund. On the last Friday of each month my colleagues all go to work in casual
clothing and make a donation to a charity. Nisbets plc will then match the
donation. We raised a fantastic </span><b><span lang="EN-GB" style="font-size: 14.0pt; line-height: 115%; mso-ansi-language: EN-GB;">£856</span></b><span lang="EN-GB"> for the hospital! A great result
that again helps raise awareness of this rare disease.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<br />
<div class="MsoNormal">
<span lang="EN-GB">The final
bit of news is that my annual CT scan date has come through in the post this
week. So on September 11<sup>th</sup> I’ll be heading up to Basingstoke to spin
the PMP wheel of fortune once again....<o:p></o:p></span></div>
Davehttp://www.blogger.com/profile/08987847582949613057noreply@blogger.com0tag:blogger.com,1999:blog-4339253742486294847.post-57184757413232260252015-04-03T11:27:00.000-07:002015-04-03T11:27:22.844-07:00Results of SeHCAT Scans....<div class="MsoNormal">
<span lang="EN-GB">So it’s official, I am suffering with bile
salt malabsorbtion. The results of my recent SeHCAT scans have shown this to be
the case. However I am lucky enough not to be suffering from the usual side
effects experienced by most people (chronic diarrhoea) and instead it has
manifested itself in my low vitamin B12 count.</span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">The SeHCAT scan is the easiest and most
reliable way to diagnose bile acidic malabsorbtion and is done in two parts. It
measures the multiple cycles of bile acid excretion and reabsorbtion. Bile acid
(salts) are produced in the liver and enter the biliary system where they are
stored in the gall bladder (mine was removed during my first cytoreductive
surgery) and are released after meals where they play an important role in the
digestion and absorption of fats in the small intestine. Then, around 95% of
the bile acid is reabsorbed by the ilium (which was affected in my initial
appendectomy/peritonitis) and the liver (Liver capsulectomy during initial
cytoreductive surgery) where they are then re-secreted. This usually happens
between 4-6 times a day.</span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">There are three classifications of types of
bile salt malabsorbtion-</span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<b><span lang="EN-GB">Type
1-</span></b><span lang="EN-GB"> Bile acidic malabsorbtion related to ileal
resection or inflammation (found in Crohn’s).</span></div>
<div class="MsoNormal">
<b><span lang="EN-GB">Type
2- </span></b><span lang="EN-GB">Idiopathic bile acid malabsorbtion, Primary bile
acid diarrhoea.</span></div>
<div class="MsoNormal">
<b><span lang="EN-GB">Type
3- </span></b><span lang="EN-GB">Secondary to various gastrointestinal diseases
including (chlolecystectomy).<b><o:p></o:p></b></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB"> At
the first scan I attended the nuclear medicine department at Bristol’s
Southmead hospital and was initially given a radioactive pill to swallow some
two hours before the scan itself. Next came the scan itself. The scanner is
slightly different to a CT scanner in appearance in that once on the “bed” the
patient is positioned between large “plates” both above and below the bed. You
then have to lie still for a ten minute period where the level of radio
activity hitting these “plates” is recorded. And that’s it!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg710dOwEWLq7ZoxGyhUwi3Fkh1bPt26i-1vRSBJW5hH3VPv0q7s6-AvsKx-i5jkks21-mM3tLtdL5z4s9jo_07Uo3PUVaE6LcSWs6hUCWDkz-5bUGohksOTfttX3Bw4lokn2jqA86s2STO/s1600/SeHCAT.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg710dOwEWLq7ZoxGyhUwi3Fkh1bPt26i-1vRSBJW5hH3VPv0q7s6-AvsKx-i5jkks21-mM3tLtdL5z4s9jo_07Uo3PUVaE6LcSWs6hUCWDkz-5bUGohksOTfttX3Bw4lokn2jqA86s2STO/s1600/SeHCAT.jpg" /></a></div>
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<div class="MsoNormal">
<span lang="EN-GB">The scan is then repeated seven days later
where the radioactivity level is again recorded and the amount of reabsorbancy
can be calculated. Retention at 7 days should be above 15% values below 15% are
considered mild, below 10% moderate and below 5 % severe. Not sure where I lie
on this scale as yet!</span></div>
<div class="MsoNormal">
<span lang="EN-GB">Due to my lack of symptoms other than the
B12 deficiency which is being treated with supplementary injections every 12
weeks there is no need for any further treatment. However the side effects of
bile acidic malabsorbancy can be treated with medication if required.</span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<br />
<div class="MsoNormal">
<span lang="EN-GB">So for me it’s good news, the reason for my
vitamin B12 deficiency has been diagnosed and we now know that bile salt
malabsorbancy is present. Something to keep an eye on. But for now I am lucky
that I don’t have any other side effects. I am fit and well, feeling better
that I have done in a long time now that the B12 jabs are working. I’m back
running longer distances (up to 10miles) on a Sunday morning and back caving
regularly. Right now life is good! </span></div>
Davehttp://www.blogger.com/profile/08987847582949613057noreply@blogger.com6tag:blogger.com,1999:blog-4339253742486294847.post-87356496171680313852015-02-20T14:55:00.001-08:002015-02-20T14:55:21.762-08:00The Cancer Survivors Club second edition...<span lang="EN-GB" style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><br /></span>
<span lang="EN-GB" style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><br /></span>
<span lang="EN-GB" style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><br /></span>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVkyTYDPUYFIZAkt2ov7Oo3UJwsk592Y2jb8pJBWZPJOd8o7gT4htsioqzfLNPCsNuezHyVH8w0ZVxnwuetEKMVxU4axr9AA4VIcuuXG-qJsdO4V1ADUPvbVry0dX6nsvoUTOYy-xq0izK/s1600/20150220_213006.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVkyTYDPUYFIZAkt2ov7Oo3UJwsk592Y2jb8pJBWZPJOd8o7gT4htsioqzfLNPCsNuezHyVH8w0ZVxnwuetEKMVxU4axr9AA4VIcuuXG-qJsdO4V1ADUPvbVry0dX6nsvoUTOYy-xq0izK/s1600/20150220_213006.jpg" height="320" width="264" /></a></div>
<span lang="EN-GB" style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><br /></span>
<span lang="EN-GB" style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><br /></span>
<span lang="EN-GB" style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">I’m
pleased to share the news that <b>The Cancer Survivors Club</b> second edition is now
on sale. Chris and Catherine Geiger have worked tirelessly in the last few
years and their hard work has paid off. Oneworld publishing has published the
second edition which is now available from all major on-line and independent bookstores.
For details as to <a href="http://www.thecancersurvivorsclub.co.uk/wheretobuy.html" target="_blank">where to buy the book</a> click
on the link.</span><br />
<span lang="EN-GB" style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><br /></span>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcd7Nh3qbWg3TgC1LfkbVkhfWqJ5GD9pS4O1zXVYpQkcN0_R28-asJDiEPRBo1e3YfJWlUD4gR7MQXXjdckibK8eV6OYzy-gLliH7uRnxhSkG_PRDOHt9zY3L4SCjfUzBgDQmvKpLi6UyK/s1600/1509844_880730628645266_8925530572126737967_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcd7Nh3qbWg3TgC1LfkbVkhfWqJ5GD9pS4O1zXVYpQkcN0_R28-asJDiEPRBo1e3YfJWlUD4gR7MQXXjdckibK8eV6OYzy-gLliH7uRnxhSkG_PRDOHt9zY3L4SCjfUzBgDQmvKpLi6UyK/s1600/1509844_880730628645266_8925530572126737967_n.jpg" height="239" width="320" /></a></div>
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The Cancer Survivors Club on-sale in Waterstones.</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">The launch
of the second addition coincided with World Cancer Day on February 4<sup>th</sup>
which proved to be a very busy day for Chris promoting the book with Radio interviews on over 12 local BBC Radio stations. Some of the stations included BBC Sussex, Stoke,Surrey,Wiltshire, Shropshire, Cornwall and Northampton. Chris also spoke with Vanessa Feltz on BBC London which formed part of a fascinating program about cancer on World Cancer Day. The show includes discussions with leading experts on cancer who now tell us that one in two people will now get cancer at some point in our lives. This is down to our lifestyle choices and the fact that we are living longer.The good news is that more people than ever are surviving cancer.There is also an extraordinarily moving interview with a gentleman -Pete diagnosed with terminal cancer. Pete says that the most important thing that he has learnt since being terminally diagnosed is that "life is a gift" and that "the most important thing I have learnt in life is love,this is what matters".</span></div>
<div class="MsoNormal">
<span lang="EN-GB">To listen to the program in full click on the <a href="http://www.bbc.co.uk/programmes/p02gzc1b" target="_blank">link</a>, Chris's interview starts at 54 minutes into the program.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpuHP4IxtdIHndchD_Q380ifX9Ykry6uvqNrBCx7ldaS4vROKsDLfYrPfBxh4EpYvs7hDxfUDhSIL0XnN9WFOCWNU3_HMwQ20h2mQChMyItkhByqkqOxmZxT0s-12PRBG7Vm3kTjVvpVnj/s1600/1484638_880849511966711_8305503719180067252_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpuHP4IxtdIHndchD_Q380ifX9Ykry6uvqNrBCx7ldaS4vROKsDLfYrPfBxh4EpYvs7hDxfUDhSIL0XnN9WFOCWNU3_HMwQ20h2mQChMyItkhByqkqOxmZxT0s-12PRBG7Vm3kTjVvpVnj/s1600/1484638_880849511966711_8305503719180067252_n.jpg" height="239" width="320" /></a></div>
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Chris hard at work on the radio!</div>
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<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
The book has also received some fantastic reviews from all over including an article in the <a href="http://www.express.co.uk/life-style/health/556358/20-life-lessons-from-cancer-survivors" target="_blank">Express- 20 life lessons from Cancer Survivors</a> and even from blog sites such as <a href="http://vortexofbloggery.com/tag/what-do-i-say-to-someone-with-cancer/" target="_blank">Vortex Bloggery-What do I say to someone with Cancer?</a></div>
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<br /></div>
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On the rear cover of the book Bob Champion calls it a "Very inspirational book" and the Nursing Times saying "What a wonderful book.I laughed,I cried and was inspired"</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">In an
e-mail to me Chris shared –<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
<span lang="EN-GB">“ This
astonishing,crazy and sometimes frustrating journey started as nothing more
than a self-published project,as a result of being diagnosed with cancer many
years ago. It soon became one of the best selling cancer survival books. I’d
always been convinced if I could get this book in the hands of anyone touched
by cancer it would offer them great support, hope and comfort. My only problem
was proving it to a publisher.”<o:p></o:p></span></div>
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<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Chris goes
on to say-<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">“Now thanks
to the incredible generosity and power of Oneworld Publishing, who instantly
recognized how beneficial this book is to anyone touched by cancer, it is now
available to a much broader audience, than I would ever have been able to
achieve through self publishing.”<o:p></o:p></span></div>
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</span></div>
<div class="MsoNormal">
<span lang="EN-GB">“Finally
however, if it wasn't for the kindness, trust and support of the survivors who
let me use their deeply personal stories in the book, none of this would have
been possible. Thank You!”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Chris is keen to get across in the radio interview with Vanessa Feltz that on World Cancer Day we should be focusing on the positives...<u>more people than ever are surviving cancer</u>. And this is the message underpinning the Cancer Survivors Club book and a message that I have always tried to promote in my blog. Yes, I have been through two major surgeries now in my battle against Psuedomyxoma Peritonei, but I'm still here, still fighting, still running, still caving, still loving my family and still loving life. This is the message that Chris and all the cancer survivors in the book are shouting loudly...</div>
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<br /></div>
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So if you or your family have been touched by cancer or you want to be inspired by some truly uplifting stories then go buy a copy...</div>
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<span lang="EN-GB"><br /></span></div>
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<span lang="EN-GB"> </span></div>
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<br /></div>
<span lang="EN-GB" style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"> </span><span lang="EN-GB" style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><br /></span>Davehttp://www.blogger.com/profile/08987847582949613057noreply@blogger.com1tag:blogger.com,1999:blog-4339253742486294847.post-25220275129296490432015-01-18T10:26:00.000-08:002015-01-18T10:54:54.333-08:00A New Year.....<div class="MsoNormal">
<span lang="EN-GB">As the sun
rises on a New Year many of us are full of wonder as to what the months ahead
hold for us? Most people are looking forward to summer holidays, birthdays and
those special occasions that pepper the year ahead however, for the PMP
sufferer the year ahead can be full of very different things.</span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB"> For the newly
diagnosed the year holds days full of fear as to what might lay ahead, tests ,
surgery and uncertainty. For those fresh
from treatment the long road to recovery lies ahead but a feeling of relief
grows inside with every day that passes and the dawn sun rays feel warm on your
skin as the spring beckons . For those of us that have been free of
Pseudomyxoma for some time there is one date that is burned in our mind; annual
scan day. Will we be lucky enough to receive the N.E.D (no evidence of disease)
letter in the post we all crave or will the beast return? Those two weeks or so
between scan and results are terrifying.
And then there are those among us who have been told the devastating
news that there is no further surgical option. I can’t imagine how this must
feel, the fear of what the future holds, the clock ticking loudly in your ear.
Unimaginable. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">To stand on
the front line battling Pseudomyxoma year in year out as your fellow soldiers
are picked off by the PMP sniper is a sobering place to stand. But rest assured
our army is strong, we stand tall, we stand united and one day we will win the
war.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Personally
2015 has started well, I'm fit and well. Lucky enough to have come through two
surgeries relatively unscathed. I still
run two or three times a week and am still caving regularly (in fact I was
underground only last night!). Investigations are still under-way regarding my
vitamin B12 deficiency; the regular jabs have helped me immensely and I feel
like a new man. Recent blood tests have shown an abnormal level of protein in
my blood and further investigations are underway. I also have a SeHCAT scan in
early March. This is a new type of scan for me. It’s done in two parts and for
me is to test the bile absorbency within my bowel. From what I understand at
the first scan I am initially given a radioactive pill and then don’t get
scanned until about two to three hours later. The level of radioactivity is
recorded and then I am sent away and have to return seven days later for a
repeat scan where again the radioactivity level is recorded. From the two test
results the level of absorbency can then be ascertained.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Within the
body bile is produced by the liver to help emulsify fats in the digestive
system and passes through the gall bladder and into the bowel where it is
reabsorbed at the ileum. I had a liver capsulectomy, my gall bladder was
removed and had a right hemicolectomy in my first surgery, all which could have
affected my bowels ability to absorb bile. We’ll see what the test results have
to say.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">My last
post advertised the second Pseudomyxoma patient day at Basingstoke and North
Hampshire hospital. As most of you are aware I was unable to go this year due
to my eldest’s 18<sup>th</sup> birthday falling on the same day. However the
reports back were that the day was once again a real success. Having run one of
these days before I understand the format had been improved to make for an even better day than the first time around.
A close PMP friend of mine Robin Newhouse attended with his wife Karen; this
was the first time they had been. Both thoroughly enjoyed the day and found it extremely
informative. In an e-mail to me Robin wrote...<o:p></o:p></span><br />
<span lang="EN-GB"><br /></span>
<span lang="EN-GB">"<i> I am sure that all fellow PMP sufferers who attended found the whole experience as equally uplifting as we did-it was clear that we are certainly not alone in dealing with this uncommon prognosis, and really encouraging to meet fellow sufferers and professionals to discuss and review our experiences.</i></span><br />
<span lang="EN-GB"><i><br /></i></span>
<i>I believe that the way ahead will offer more encouragement amongst those affected from a closer </i><br />
<i>degree of contact with their surgeons and clinical teams,and to be able to participate personally was really helpful in this respect, by attending the Meeting.</i><br />
<i><br /></i>
<i>We found the break-out sessions that we attended, Sessions 2 and 4 particularly helpful.</i><br />
<i><br /></i>
<i>From the discussions within our Breakout Session 4, chaired by Tom Cecil, it was very encouraging indeed to learn that there are plans to create a dedicated website/portal which will offer all of those involved, the patients and the clinical teams, a new opportunity to inter react, and thereby facilitate the exchange of information."</i><br />
<i><br /></i>
The patient forum run by Basingstoke and North Hampshire Hospital is now a date not to be missed if you or a member of your family suffer with Pseudomyxoma Peritonei. Here the most up to date news on diagnosis,treatment and care can be heard from the leading experts on this subject. I strongly advise attending, its also a great opportunity to meet fellow sufferers of a disease that affect just 2-3 people per million per year.<br />
<br />
On another positive note I have just found out this week that the company I work for will be doing a dress-down day to raise money for Basingstoke and North Hampshire Hospitals Pseudomyxoma and Colorectal Cancer Trust Fund in May. Any money raised by the staff will be matched pound for pound by Nisbets Plc. It's fantastic news and I am chuffed to bits that the business has chosen to help the hospital that has done so much for me and many other Pseudomyxoma and bowel cancer sufferers. Without them I wouldn't be writing this today...<br />
<br />
<br />
<span style="background-color: white;"><br /></span>
</div>
Davehttp://www.blogger.com/profile/08987847582949613057noreply@blogger.com1tag:blogger.com,1999:blog-4339253742486294847.post-10981593530176034952014-11-04T12:46:00.000-08:002014-11-04T12:46:06.761-08:00A meeting for patients, carers and families to talk about Peritoneal Malignancy.<div class="MsoNormal">
<span lang="EN-GB"> I’m pleased
to announce that the Pelican cancer foundation at Basingstoke and North
Hampshire Hospital are again running a meeting for patients, carers and
families who are affected by Peritoneal Malignancy.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">The event
is being held at Basingstoke and North Hampshire Hospital’s Ark Conferencing
Centre on the 10<sup>th</sup> December between 1and 5pm. The event is FREE to
attend but there are limited spaces available so YOU WILL NEED TO BOOK YOUR
SPACE. Call Pelican on 01256 314746.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB"> As with the last event talks will be held by
Dr. Paul Sugarbaker along with surgeons and nurses from the Basingstoke
Malignancy Institute.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Break-out
sessions are again being held covering the following topics-<o:p></o:p></span></div>
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<div class="MsoListParagraphCxSpFirst" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
</div>
<ul>
<li><span lang="EN-GB" style="font-family: Symbol; text-indent: -18pt;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; font-stretch: normal;">
</span></span><span lang="EN-GB" style="text-indent: -18pt;">Developments
in research.</span></li>
<li><span lang="EN-GB" style="font-family: Symbol; text-indent: -18pt;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; font-stretch: normal;">
</span></span><span lang="EN-GB" style="text-indent: -18pt;">Psychological
effects of surgery.</span></li>
<li><span lang="EN-GB" style="font-family: Symbol; text-indent: -18pt;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; font-stretch: normal;">
</span></span><span lang="EN-GB" style="text-indent: -18pt;">Post
Operative bowel function.</span></li>
<li><span lang="EN-GB" style="font-family: Symbol; text-indent: -18pt;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; font-stretch: normal;">
</span></span><span lang="EN-GB" style="text-indent: -18pt;">Patient
follow- up.</span></li>
</ul>
<!--[if !supportLists]--><br />
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<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">When
booking your place you will again need to indicate which breakout session you
wish to attend.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB">I can’t
shout loud enough to say what a great event this is. If you have been affected
by Peritoneal Malignancy then I can strongly advise attending to get the very
best and most up to date information from some of the leading experts in the
world on this subject.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">It’s also a
fantastic opportunity to meet fellow PMP sufferers and carers face to face and
share stories and experiences and to offer support and hope to the newly
diagnosed.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-GB">Unfortunately
this year I am unable to attend due to family commitments and will miss seeing
you all again.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
<br />
<div class="MsoNormal">
<span lang="EN-GB">Below is
the official flyer for the event. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB"><br /></span></div>
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Davehttp://www.blogger.com/profile/08987847582949613057noreply@blogger.com1