Sunset on Perranporth beach.
Saturday, 18 November 2017
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…..!
Sunday, 4 June 2017
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….
Sunday, 29 January 2017
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.
Sunday, 15 January 2017
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!