256. Human Pin Cushion

Sad to say but my veins are beginning to protest loudly at what they consider gross mistreatment. My favourite phlebotomist failed three times to get blood. Of course, that may be my body saying ‘Nope. I need all I can get’ cos I am sadly short of the necessary blood cells and vampiric urges sweep through me occasionally. You’d think they’d offer a simple blood transfusion but I’m not down to the qualifying level yet. I have to say it’s a weird feeling looking down at a needle inserted right to the hilt and not a drop of blood appearing. Of course, as soon as she removed the needle, blood started pouring down my arm! Anyway, the phlebotomist was about to call for the Big Man, the head honcho who never fails (huh) , but decided to go back into the first site et voilà, blood. Enough to fill two vials and provide the required data a day earlier than advised. I’m past caring on that one. I did NOT want to go back the next day and the chances of getting bloods done locally is zilch.

All is well. My blood markers are at 19 and my tumour marker is at 6 still. When I said I wanted that figure to drop, Dr U said he didn’t and he showed me the critical figures that put you into their red zone and it was anything below and including 5. I can’t say I understand it but it’s good enough for me if it’s good enough for him. I am, as they say in one of the F/B groups, Stable Mabel. 

The 13-week waiting list for CT scans was nonsense. I’m booked for my scan on Bank Holiday Monday at 5.30. Merry Christmas everyone! Apart from identifying that lost kidney and (let’s hope not) finding more suspicious areas inside, the scan seems pretty pointless as it’s not designed to pick up the areas where my cancer has so far settled. An MRI shows the tumour and I had one in September so it will be several months before I’m offered another (unless those markers start rising).

On the down side, having had a pretty miserable two weeks bowel-wise (my English is deteriorating!), I asked about my side effects and he said this was pretty much it after 11 cycles. I’m stuck with what I’ve got. That means

• Unpredictable bowels and hours spent sitting on the loo, often in the early hours of the morning when I keep my eyes closed as much as possible, in the vain hope I won’t fully wake up.
• Insomnia. I feel sleepy at 10 or 11pm then I am wide awake till 2 or 3. My kindle and the continued struggle to read Queen Lucia to the end (3 weeks now?) is helping me fall asleep.
• Unpredictable fatigue, meaning days when I just can’t find the energy to get out of bed and…
• Being able to walk very short distances and getting rather breathless, which I can tell you is not much fun when you’re wearing a mask.
• Sore toes and numb fingers, not much use to anyone.
• Self-pity.

So, great news on the cancer front, less great news on the body front. We’ve been invited to our friends’ house Christmas Eve and I’ve been invited to lunch at Cookridge Hall on Wednesday but I don’t know if I want to take those risks. The guidance is pretty vague this time. I’d rather be instructed to shield till I get my booster in a few weeks as it’s due on 14 January (if they go by calendar months) or earlier if they mean 12 weeks. Who knows? I think with that booster, I’ll feel more confident but it’s all too uncertain for me. I don’t want to break free and then find myself on a ventilator (how will I take my chemo???). Maybe it’s best to stay semi-shielded? 

Anyway, I’m off to wrap the few presents I have bought and sort out delivery. I’m sadly lacking in Christmas spirit. Even my little tree has yet to be decorated but, this year, not a needle has fallen - YET.

My beautiful Christmas bouquet

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.