255. Big Wide World

 This cycle so far has been remarkable. It’s day 7 and I still feel FINE. My mouth goes a bit funny as the day progresses but that was happening before I started this chemo, and of course everything is dictated by the bowel issue. Yesterday I slept and slept, so much so that I woke this morning believing it was Sunday. However, I’ve been mobile, I’ve socialised and generally been almost normal. I do suspect part of the problem is I don’t push myself at all. If I’m tired, I just don’t get dressed. That consigns me to yet another day of reading (if I’m lucky), puzzles from the newspaper, tv and internet. Hardly a healthy lifestyle.

Last week, despite being on the chemo, I drove myself to various situations I’ve not been in for so long. I’ve almost forgotten how to be me.

Monday: Cookridge Hall, met Carol for a coffee after her swim. I know I planned to renew my membership this month but, right now, I couldn’t walk down to the pool without feeling exhausted. I’d probably sink!

Wednesday, Book Group, discussing one of the worst books I’ve ever read - Queen Lucia by E.F?Benson. I hadn’t read more than a third. The group was divided between those who gave up, those who raved about it and have either read or plan to read the whole Mapp and Lucia series, and those whose reaction was lukewarm. It was good to be back among people. Obviously because cake was involved, few were wearing masks and we weren’t socially distanced but the window was open, two others in the group have cancer as well (????) and obviously felt it was safe so I relaxed, removed my mask for tea and cake and for expressing an (uninformed) opinion. 

Friday I attended a support group at Maggie’s, run by Breast Cancer Now and facilitated by a trained therapist. I think there were about 14 there and there was a little distance between seats but it certainly wasn’t socially distanced. Yet, despite everyone having cancer and some of us immunocompromised, only one person was wearing a mask and she was heading off for chemo after the group ended. I can’t tell you how good it felt to be among women who understood exactly what I might feel and someone on the same chemo. We’re obviously very different - she gets copies of all her reports and does research; that’s anathema to me. The heart-breaking thing, apart from the facilitator announcing that one of the group had died that week, was that most of the women were so young. Statistically, only about 7% of breast cancer patients under 50 go on to develop secondary bc, yet here I was with young mothers each side of me. I’ll allow for the fact that I’m ‘old’ in terms of the demographic but how they manage to look after a family defeats me. One of them is in and out of hospital with neutropoenia for days at a time…

I finally plucked up the courage to email the practice manager of my GP practice, outlining all the areas where I feel they could have done more and I might have had an earlier diagnosis. To soften the complaint (I’m such a wuss) I started by asking what their protocols were for women who were identified as high risk of a recurrence or of secondary bc and for people who have secondary cancer (of any kind, understood I hope) but I ended by saying they had made me feel invisible. I do feel neglected - only one other woman in the group had not been in regular contact with a GP since their diagnosis and had been contacted immediately by their GP to offer support. Huh! And all of them are in this situation now, so the practice can’t blame covid. I felt incredibly sad after I wrote it. I think that was Tuesday. I received an automatic response asking patients not to contact the practice as they are extremely busy. But today I got an initial response, with an apology for how I feel and an assurance that she will look into the complaint. I hate calling it a complaint. Funny because if it were something I’d bought, I’d be standing on firm ground but when it comes to what are, to me, authority figures, I’m on very wobbly ground.

I wrote a response on one of the secondary bc Facebook groups, because I don’t think encouraging newcomers to do research is necessarily right - it’s helpful for some, it’s a nightmare for others. I even gave my own example, when I was horrified to find my chances of survival were below ‘Poor’.  I’m not quite sure what went wrong, particularly as the woman who posted agreed to some extent but she’s being treated in Paris where, apparently, they are all enrolled with some college and encouraged to research under guidance. It’s that last bit that’s so important. Anyway, I’m mean, rude and patronising. There you go, that’s me told. All because I don’t agree with something and say so. I guess it’s how it’s said but I said it no differently from usual. Incidentally, it took me about 30 seconds to remember the word’ rude’ and a minute of memory-searching to locate ‘patronising’. Is that age or chemo? It’s actually an intriguing process, once you get past the frustration. I wonder if everyone uses the same methods/

One more week to go. I HATE having to eat and take tablets to order.