If one more person says “you’ve got this” or “you are so strong”, I think I might floor them. The other day, someone at the swimming pool told me she wouldn’t have been able to cope if she had had all the issues I have had. I suppose it was a compliment in an odd kind of way. It’s also one of the prices I have paid from being very open about my condition. I knew I wouldn’t be able to hide some of the physical changes and didn’t want speculation. Most of the time it gets me support and understanding, but it also comes with a side order of intrusion, ridiculous comments and suggestions. “Can’t you just [insert something not suitable for my condition]”. “Have you tried [insert latest crackpot idea]”. I recently had to walk away from someone who tried to blame it all on Covid vaccines (yes, I have recently had another booster).You can only imagine the unhelpful suggestions I am receiving about my recent gout problem. My damaged kidneys are making too much uric acid, so removing red wine and cheese from my diet isn’t likely to do anything other than make me more miserable. Neither of these are particularly high in purines anyway. I don’t drink beer or sweetened drinks, which are much more implicated.
It’s the final week of my steroid wean, and I should be feeling good about that. In reality, I am finding it hard. I think my adrenal glands are struggling a bit as I am quite fatigued and achy. Paracetamol helps, but I never feel comfortable taking it around the clock, even though I know it is safe to do so. Residual inflammation from my immunotherapy checkpoint inhibitor related “adverse event” is still a problem. Neuropathy in my left leg; my foot feels like a brick, my lower leg and buttock like they are wearing compression garments, and my gait is affected. Toenails on both feet are still sore and the gout on my right foot adds to the mobility issues. I have gone from being a regular runner to someone who can only walk 5k at a slow pace and with the aid of walking poles. My lungs are probably still affected but it’s hard to tell when I am so slow. My abdomen continually feels sore from low level colitis, which occasionally breaks out into diarrhoea. All of these things should improve over time. I certainly hope so.
What about the cancer, you may ask? Last I knew, the cancer load comprised 2 tumours in my liver that had shrunk considerably thanks to the Pembrolizumab, and were burnt out using ablation in February. I saw a CT shot of the larger ablation site the day after my procedure, and it looked a good complete job, albeit one with a detached needle inside it (the reason why I had the CT). I have a follow up CT on 29th May, 3 months on from the procedure. I obviously hope that will be clear, and that I will have got some relief from the adrenal insufficiency and inflammation issues by then. It would be good to be able to start to recover my fitness a bit. We have planned a holiday to Sicily afterwards and I am hoping I am well enough to enjoy it. It’s good that I can sit in the garden at the moment, but I would much rather be out in the parks and forests or on our seafront. Got an ambition to get back to running, but it seems an impossible goal at this time. But as people say, I have got this and I am strong.
