Sometimes you need to moan. It is one of those times.
It’s been a tough couple of weeks. Tough on body, tough on mind. Generally I pride myself on a reasonably positive disposition but, I am sure we have all experienced it, there is a certain kind of ill, the relentless, no sign of any endpoint, night and day, no change, niggling type that chips away slowly at your sense of well being till it packs up and leaves you feeling crap inside and outside.
Initially it was quite alarming when my new drugs had a very poor result and it looked like they weren’t doing to work at all, which left no further new drug treatments to try so a lot of uncertainty. The fact that the drugs seemed to be making me poorly losing weight and generally getting quite ill. No serious pain but a feeling of detachment and general sikliness which could be the cancer or the painkillers or both. Also my brain was very addled and I felt a bit panicky. Feeling ill but knowing you are getting better is very tolerable but feeling ill and not benefiting from the discomfort is altogether unacceptable
We decided to give them one more go and I have been waiting to see the results with some trepidation and yesterday I got more positive readings so a big sigh of relief.
I have gone onto some anti anxiety medication which will take a week or so to kick in but should help with the continuous disrupted nights which have been getting me down. I am certainly not depressed or in despair but I would like to have the odd night without the adrenaline rush that precedes going to the toilet, taking a pain killer or resigning myself to YouTube till I fall asleep with my iPad across my face. Sleeping pills might have the same effect but I find sleeping pills leave you drowsy all the following morning and that’s the last thing I need. I have had anti anxiety medication before and what i remember is it takes the edge off the blast of nighttime colliwobbles or it did for me without having any great effect on drowsiness. Tiredness means I haven’t found a lot of energy to pursue any projects which is frustrating and makes me a bit sad. I am not doing nothing, but Inspector Morse and German Easy readers are getting a damn good airing. It’s at this time that you feel you should be able to will yourself into a more positive frame of mind and I guess strong people can do this but I resigned myself long ago that I am not one of those people that others admire for their resilience and stoicism. I am a wimp but very happy admitting it. I find that feeling physically Ill all the time (even though it’s pretty mild) has deprived me of the sort of tenacity, strength and good humour that people admire in the cancer afflicted and for now I just want to sleep and go through the motions of being a functioning cheerful enough human being.
However
I am much revived by my wonderful family who have been able to visit and put up with the blob on the sofa that groans. I admit I live vicariously through them. Their activities, their lives fill me with so much pride and pleasure that they act like a power bank. They visit the old man in his bed, bring the old man cups of this and that and relieve Maria of the endless task of supplying the old man with his necessities. More than anything they judge perfectly the degree of stimulation the old man can cope with or desires. That said I admit that I really understand how Dad felt when he was ill in hospital and was always keen for is to visit and then seemed to want rid of us. For him it must have been really tricky because we were all stuck in the same room with nowhere for him to escape, wheras for me I can just retire to my room and everyone understands its nothing personal its just my inability to deal with lots of stimulation and a pressing need for 18 hours a day of semi sleep. I still feel bad at having to opt out of everything, but opt out I will continue to do and they get all it.
Now that we have better news on the drug I am determined to try with the consultant to get the dosages balanced and working. I am not expecting to be able to function as I was but I would like to be able to do a few hours of project work, walk more than 100 metres, take a poo without having to drink 6 sachets of laxido in an hour, not wake up 5 times a night to take a wee and not need a hot water bottle when the temperature is 20 degrees. I am pretty sure the painkiller dosage which is still high can be dropped and that could make a massive difference as it’s the reason for the constipation as well as the daytime drowsiness. My visit to the NAC in July may provide some alternative strategies worth trying. There are many positive steps available to me it just been the last couple of weeks when they appeared to have been washed away in a violent rain storm leaving just a muddy stream of despair and existential angst (now that what I call cancer blog writing). Not sure which I find worse the gloomy stuff which I assume is pretty rare but might actually be quite refreshing to read, or the ‘this is a battle I am going to win by running up five high hills in a day wearing a sweatshirt bearing a meaningless strap line, so send me some some money so I can do it.’ But I shouldn’t be cynical everybody should address this disease in whatever way works for them
As I related before there are some more positive things that emerge from the imposition of this unproductive regime. The most positive is a feeling that I can take the time and not feel guilty about exploring any topic that pops up in my tictok feed. I am particularly pleased to discover bits of music, composers and performers doing interesting things that I have never heard of, such as this https://youtu.be/5b3XkCi3jsQ?si=b_thVHRJVVmrCoxx and then annoy the family by insisting they take a listen.
So that’s it for now. I really hope my next post will be more about life in general and projects than illness but I am finding it helpful not to put myself under pressure and go wherever my body wants me to go at the pace it wants to go – which is very very slow indeed.