Saturday, 12 November 2016
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!
Saturday, 15 October 2016
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.
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.
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.
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.
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.
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.
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…..
Sunday, 25 September 2016
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”.
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?
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.
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”.
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.
Sgwd-yr-Elra, Four falls trail
Sgwd-y-Pannwr, Four Falls trail
Blaen Y Glyn
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!
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.
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…
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”…….
Sunday, 14 August 2016
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.
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.
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!
The Forest of Dean
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.
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.
My little piece of paradise.
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.
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.
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?
Saturday, 18 June 2016
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.
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.
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.
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.
Dr Amani Albedah, myself, Brendan Moran, Dawn Green & Tom Cecil
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….
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.
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.
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.
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!
Rest in peace Dawn….
Sunday, 15 May 2016
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.
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”.
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.
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!
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.
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.
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.
Jon in the Longwood Valley
Carpets of Bluebells
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.
Jon on the cliff path
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.
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.
Brent knoll lurking in the haze in the distance.
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.
In all it was a great day in fantastic surroundings and it felt great to be alive....
Saturday, 9 April 2016
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.
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?”
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.
So in that time between scans an appointments and treatment how do you carry on?
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.
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.
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.
My next CT scan is scheduled for 18th 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?
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.
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!
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!
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...
Saturday, 6 February 2016
On Friday 29th 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?
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 porta hepatis, close to the bile duct and pancreas.
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 Pancreatoduodenectomy. Both options are considered major surgery.
Surgery to remove bile duct cancer is often done in two parts. Portal vein embolisation (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 (lobectomy).
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.
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.
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.
There are a number reasons for coming to this decision-
Firstly, whilst there are areas of concern that appear on the CT scan my CA19-9 (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”.
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.
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.
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.
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.
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
“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”!
Steve, I just know I’m ‘gonna have a fit of giggles at my next appointment, thank you!
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...
Tuesday, 19 January 2016
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.
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!!
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.
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.
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…
The latest news is that I have an appointment at Basingstoke and North Hampshire hospital on the 29th January. At this appointment we will meet with Ben Cresswell. Ben often works with the Psuedo team and on the Hospital website it states
“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).
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.”
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.
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.