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!