November 2024

 November 2024

 

Its been quite some time since my last update celebrating the ten year anniversary of my first cytoreductive surgery. Here we are some four years later, and I’m pleased to advise not too much has changed but the disease is slowly progressing as you may expect.

When I was re-diagnosed, we knew that there was another reoccurrence of Pseudomyxoma Peritonei (my third diagnosis) around my bile duct and close to major arteries making it difficult to access. At the time it was some seven millimetres in size. Fast forwards to February 2024’s scan and this had grown to around seven centimetres.

I have spoken a number of times to the team at Basingstoke regarding what to do next? A bit of a dilemma it seems…..

Right now, I’m enjoying life and living it to the max! I’m afraid my long- term hobby of caving has taken a back seat and been superseded by scuba diving! Why didn’t I start this at an earlier time in my life?!! Its an amazing hobby that has brought about some truly amazing experiences with some amazing people (the Dreamscape divers family!). In the four years since my last post, I have progressed from a PADI open water diver to a rescue diver and due to do my 100th dive on my next trip. From diving top ten wreck sites in the world to diving with wild Atlantic grey seals the sport has given me so much, its true to say I’m utterly addicted. I owe a great deal to the team who have taught and continue to support me through my diving journey.

But can you dive with cancer I hear you say? The simple answer is YES!

 I know I’m not the only Psuedomyxoma patient who enjoys scuba diving as a hobby. Clearly it all depends on the individual and how the disease presents itself or the side effects of treatment. I’m really lucky in that right now I have no side effects and I’m leading a normal life. I’m also really lucky in that I have a great HSE dive doctor who has supported me throughout and whom I see every two years (providing nothing has changed) to undertake a medical and get signed off.

So my advice to anyone who is thinking about learning to dive is “Don’t procrastinate, go do it”! Had I learned earlier in life I’m pretty sure my life would have taken a different path…

So back to my dilemma….

At my last visit to Basingstoke to talk to my consultant following the results of my scan we discussed what are the next steps?

• The disease, whilst still there is slow growing and not giving me any side effects and I’m living an active and normal life. It may be 6 months, a year, 5 years or 15 years before I get any side effects.

• The longer I leave things the greater the risk of additional areas of disease appearing. Obviously, I also get older and there are associated risks that come with this particularly with such a big operation.

• The operation will be another big one and with what needs to be done will have an impact on my day-to-daylife afterwards….

• If I asked, the team would do the operation now.

 

So what to do…..?

For now I have decided to crack on with life, continue for as long as possible enjoying my family and hobbies for as long as I can. Living my best life.

I appreciate that not everyone in my position would make the same choice. 

What would you do?

Ten Year Survivor Anniversary; Time….how it flies

Today, February the 2^nd marks the ten-year anniversary of my first cytoreductive surgery with HIPEC. How time flies…

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…

 07:30hrs on Tuesday 2^nd 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.

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”.

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.

 It’s not been an easy ten years however….

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.

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. 

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!

Snorkelling in Corfu!

Caving in Wookey Hole, Somerset, UK

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. 

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.

 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.

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……

CT Scan results

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
 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!
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.

 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.
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.
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!

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!

Snorkelling

Moonlit cabana beds on the beach

Rhodes Old Town

Rhodes Old Town

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!

We plan to book our next trip away early in the New Year.

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.

Fly Agaric mushroom- Savernake forest.

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!

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....
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.

Finally, I'd like to wish you all a very Merry Christmas and a happy, healthy New Year.

Dave

Still Here!

 I'm Still here!

 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!

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.

I continue with annual CT scans and bloods being taken to measure my tumour markers at the six month mark between scans.

The blood results have been OK but the markers are steadily on the rise-


Tumour Marker       2017                2018        should be less than
         
CEA                         4 ug/L                5 ug/L            5.00 ug/L
CA 19-9                 18 kU/L              20 kU/L          35.00 kU/L
CA125                     5 kU/L                6 kU/L          35.00 kU/L

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....

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!

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.

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!

   
                                          Ilfracombe, Devon.

                                         Newqay, Cornwall.
               

                                         Mousehole, Cornwall.                                      

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!".......

A New Year brings new adventures!

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.

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!

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.

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”!

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.

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….!

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!

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!

Ignorance is bliss....

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!

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.

 
    Sunset on Perranporth beach.

   Seagulls settling down for the night.

 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.

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.

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.

I felt fit, healthy and was enjoying my family, friends and the world around me.

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.

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….

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.

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.

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!

The letter landed on the doormat the following day!

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…..!

Enjoy life and create memories...

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.

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.

 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.

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.

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.

Jess & Uncle Dave in Cathedral chamber, Box mine, Wiltshire.

Mark in Cambridge grotto

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.

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.

New Quay head from the harbour wall.

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!

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!

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….

Thursday 2nd Feb 2017- My Seven Year Anniversary

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.

 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. 

 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.

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.

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.

 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.

 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!

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.

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.

 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.

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.

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.

 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.

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.

A New Year...

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. 

 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.

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”.

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.

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.

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. 

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. 

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.

                                       Bats in Thrupe Swallet-Mendip

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!

CT Scan Results

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!

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.

 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.

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.

 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.

I’m going to mull things over and possibly talk further to the team to agree the best way forward.

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.

“Live life now or live life never” tonight I’ll be raising a glass to you Syd!