The week started with the taking of the pre-chemo medication, in anticipation of chemo restarting on the Tuesday. However, after taking the first dose, we went out for a couple of hours, as it was the Bank Holiday in the UK. Whilst out, the hospital phoned to say that they were delaying the chemo again, due to the liver blood marker. I enquired as to what level is was at and it had dropped to 258, which was good to see it dropping so much, but the nurse advised that it was still much higher than the 70 top limit that they work to. That further delay was frustrating and the ‘ground-hog’ day effect was well and truly at play!

The scheduled meeting with the Oncologist went ahead on Wednesday and during that, we discussed the liver blood marker, what the cause is and what the next steps were, as well as the weird arm pain that is very much still there. The summary of that meeting was, there is no apparent cause for the liver blood marker to have been raised. We both decided to have another blood test and check the current situation. They have also asked for an ultrasound of my liver to rule out anything else; the arm pain was also unexplainable! Very frustrating to not have answers to effects that are having such an impact on the day to day life, plus the treatment plan.

During that meeting, I highlighted the concerns around the lack of action regarding my initial raising of the arm pain and the subsequent A&E session. Connected to that, I made the Oncologist aware that the GP was the person who had informed me of the high liver blood marker, instead of any of the cancer treatment team. He was very surprised and unhappy at that and told me that he would discuss with the wider team. He also told me off for the high temperature incident and my lack of action, reiterating the extreme danger that can have on my existence!

The arm pain continued during the week, as did the side effects of that single dose of pre-chemo medication. The fact that it was the only medication being taken at the moment, allowed us to assess the impact and it was clear that it causes a number of the regular side effects. We are unsure of the impact, due to not having the chemo alongside the medication, but the side effects were there and clear. Thursday afternoon brought the blood test results with the liver blood marker dropping to 129. Connected to that is the resumption of the chemotherapy, planned for next week.

The rest of the week was semi-normal and we made the most of the weekend and the good weather. We ate out three days in a row, helped by the lack of medication / taste buds being better. We also soaked up a little sun and relaxed a little. A planned catch up with some former work colleagues on Wednesday was cancelled, due to the side effects of the pre-chemo meds. That was cancelled in the afternoon, which turned out to be the right decision, as by the early evening (when we would have been meeting up), I was feeling very out of sorts generally.

In summary, another ‘delay and frustration’ week, alongside a lack of answers to big questions. The mindset now is, ‘all bets are off’, regarding what is taking place, side effects, their causes and when I can expect them to ease / cease. Now very much a case of take it day by day and determine how I feel, until I can feel or see things changing.

Thanks for the ongoing interest and taking the time to read my experiences; appreciated.

Regards

Peter