September 2019 - Recovering at home

Once back in London, the slow process of physical recovery started. My body was in a terrible shape – my weight had dropped by almost 10kg to 59kg, partly due to the loss of a few internal organs, but mostly to the loss of muscle structure and fat.

I could not stand straight as both the external and internal scars in my abdomen would start pulling immediately causing considerable pain. However, by bending my chest forward a bit, the problem would not arise and that is how I walked and stood for the first couple of weeks after my return at home.

When I more or less regained my ability to walk like a homo sapiens rather than a primate, I started to go back to the office and to the gym as well. My trainer Josh looked quite shocked when he first saw me but, very patiently, he helped me to start rebuilding my body from scratch for the second time (the first time was in April when I had re-joined the gym after a few cycles of chemo). From my side, I was quite determined to get fitter as quickly as possible in order to be able to safely restart chemotherapy.

One problem I faced, and I still face at times, is diarrhea. As far as I understand it, this has been caused by the removal of the gallbladder, whose function is to store the bile produced by the liver and to release it to the small intestine. Without that storage facility, bile is constantly delivered to the intestine, causing diarrhea. My gastroenterologist explained that this may not necessarily be permanent since our body is very clever and the liver is capable of learning, over time, how to behave in terms of producing and releasing bile in the absence of the gallbladder.

In the meantime, he prescribed in addition to Imodium another medicine which helps alleviate the problem: a bile acid sequestrant called Colestyramine (the actual brand is called Questran – see more here), which is supposed to treat bile acid malabsorption. This worked pretty well – I still have days when diarrhea heavily interferes with my life but the frequency of such occurrences has definitely decreased.

Towards the end of September I went to see my oncologist and, given the very noticeable progress I had made with my recovery, he suggested that I could restart chemotherapy the following week. I was happy to hear that – the earlier I get on with it, the earlier I will finish, I thought!

So we agreed that I would start with the new cycle on Monday the 30th September. But, during the weekend, a sudden complication emerged, completely out of the blue.

I got up on Sunday morning with a pain on the right side of my neck. I initially thought that I had slept in a funny position or that maybe I had overdone it at the gym. However, as time went by, the pain intensified and my neck became progressively swollen. I showed it to Jane, irrationally hoping that she would tell me that it did not look that bad. But when I saw the expression in her face, I immediately decided to pick up the phone and call the emergency line. After a short conversation, I was invited to make my way to the hospital so that I could get my neck properly checked out.

The diagnosis followed relatively quickly – it was a blood clot near the area where the port I have been using for chemo enters a large vein in the neck. So I was given a heparin injection (a powerful anticoagulant) and, most importantly, a good dose of liquid morphine, which quickly calmed the pain, which in the meantime had become excruciating.

The recommendation I got from the doctors was to continue with the heparin injections for at least three months, a nice addition to the already very long list of medicines I had to take on a daily basis!

Luckily the combined effect of the heparin and the morphine was such that I was able to start the post-surgery chemo on the 1st October, i.e. only one day after the original plan. Not too bad I thought.