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!