So, it turns out that John has a really rare form of cancer. According to NORD (National Organisation for Rare Disorders), John is a 1 in 2 million person! Following a visit from Sheila, the wonderful MacMillan nurse, we now have a little more information to digest. The medical team are treating John for Goblet Cell Carcinoma of the appendix. This fits with what the surgeons said at the beginning - on the CT scan his appendix was 'obliterated'.
According to the internet the average age of diagnosis is 55. Metastases are usually found in around 50% of cases, because this type of cancer is always found after more routine surgery such as appendectomy due to symptoms caused by the cancer, which are unknowingly diagnosed as appendicitis. John's symptoms triggered emergency surgery due to the bowel obstruction but, looking back, earlier telltale signs can be attributed to the primary tumour. Usual treatment is removal of the right side of the large bowel to remove all the possible rogue cells, but as we know this was not possible for John as it was already too late to surgically intervene.
I found a paper from a scientific study online which had collated the findings of several other small studies to try and get a better insight into this particular type of cancer. The cancer is so rare that the study struggled to find enough data where the results could be standardised to create the overall information for the study. This cancer has been restaged and reclassified several times as science has discovered more about it over the decades and changed the thoughts on it's cellular characteristics and how it reacts in the body over a very small number of patients.
The bad news is that there is no consensus on how best to treat stage IV GCC of the appendix. The study mentions several different treatment combinations of chemotherapy (including John's regime thankfully), and heated chemotherapy direct to the abdomen. But there is not enough data to decide whether any of the methods are statistically better than another. John's oncologist told Sheila that she needed to do more research into this type of cancer before any kind of prognosis could be discussed. It is an aggressive form of cancer, which also ties with what the surgeon said at the very beginning of the whole journey.
The good news is that the overall 5 year survival rate for stage IV remains the same for John - approximately 14%.
Anyway, chemo 7 did not go to plan!
The community nurse, Jennifer, could not get any blood through his PICC line on the Tuesday before chemo to make sure all his levels were acceptable to go ahead with the next treatment. She gave up and took them in the regular way and he was given the go ahead to attend. The plan was to give him an 80% dose for his remaining 6 cycles to see if the reduction in the dose would help him feel better.
Unfortunately when we got there the chemo nurses couldn't get the PICC line to play ball either. So, off down to Xray to check the line was situated correctly in his heart, only to find out that it had moved to the jugular vein in his neck. It was a no go - the PICC line had to be taken out and a new one put in. We got an appointment in Glasgow to get it done the same day so we headed over there straight away. The photos above are the aftermath of failed attempts to get a new line in, plus the irritation of his skin from being under various sticky plasters for 3 months - very sore indeed, and a bit of a surprise bleed from the new line one evening.
After this we went sofa shopping, seeing as we had some unexpected time in Glasgow, and found something slightly smaller than our current 20 year old (but much loved) sofas that don't really fit in the new house. On order for delivery in approx 5 weeks, and the old one will be shipped back south to the kids in due course.
John has decided he will have round 8 (28th March), all being well for the next 48 hours, and then take a break from chemo for a month as he has reached the limit of what he can take by way of how he feels day to day. He wants to feel better in himself, less tired etc, especially in time for our upcoming holiday to Italy.
The lower dose has been an improvement but I worry the nerves in his bladder are now being affected and this is one step too far for him. Whilst I understand and support his decision on this, and am desperate for him to be able to enjoy life more, have less pressure from continued medical appointments and the constant reminders of his diagnosis and various symptoms and side effects, I know what this probably means in the longer term. He is entitled to have a break, and most chemo patients do, and it may help him eventually get right through to the end of the 12 cycles that are on offer, but there is no point doing it if it ruins your quality of life. The plan after that is to stop completely and monitor the progress of the disease with 3 monthly CTs to see what happens and then decide from there. The trade off of taking a break now is, of course, that it may mean the disease begins to progress again sooner than we hope.
I cannot even put into words the turmoil of emotions in our house at the moment, and the difference between how we are each affected and how we are thinking is some days more evident than others. But in the meantime, we are trying to get through this together for as long as we possibly can.
We genuinely appreciate so many people keeping us in their thoughts, prayers etc, please bear with us though as we try to navigate this day to day minefield and longer term unknown journey. Love to you all x
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