236. Something’s not right

 Don’t panic. I mean it in a good way. Day 8 of 14 completed and nothing awful has happened. If anything, I feel better this month than last. That may of course have to do with the change in the pill size. Now I only take this many twice a day and they sip down nicely with toast. I’m consuming an awful lot of Warburton’s Toastie. I just wish I had George Clooney on Zoom!

The white one is optional as it’s the anti-nausea one and I’m inclined to give it a miss most mornings. The large white capsule is meant to prevent damage to my stomach lining but I don’t think even that stands much chance against chemo drugs which destroy anything in their path (a hard lesson I learnt last time). The orange one was prescribed for neuropathic pain, has zero effect but had a miraculous impact on anxiety - I don’t feel it in the same way or so often. Were it not for the bloody cancer, I’d now be focusing on reducing this medication and observing my levels of anxiety. As it is, shove it in - I need it.

So this, I’m afraid, is my life right now. All focused on pills and side effects, waiting, waiting for the axe to fall - severe diarrhoea, cracked and bleeding soles and palms. Cycle 2 was, my oncologist said, the hardest to get through and then it eases up. I occasionally have a red patch on the edge of my palm but there’s no discomfort and the skin is just my skin - no drying or cracking, no itching or soreness. How come I’m allowed to escape side effects? This is too good to be true. Then I remember that I’m as weak as the proverbial kitten and have a propensity to topple in the most inconvenient places. I keep looking at the staircase and wondering if it would be stupid to install a gate temporarily - if they make them adult-height. Dennis has agreed to a second banister but right now I don’t feel I need it.

I did join in an online group for women with secondary breast cancer, run by Breast Cancer Now. I did find it very helpful because a lot of the time was spent with their discussing how they came to terms with their diagnoses which was the topic I brought to the table (other topics - diarrhoea, constipation). However, someone asked if I’d been linked with a hospice yet and I mentally did a runner. I think it’s too soon for me to be thinking about things like that. Talking with the oncologist had been hard enough. Let’s give the capecitabine a chance first?

On the happy side, my story is at last online. Was it February when I heard mine had been one of the stories selected? Didcot Writers is scrupulously fair - every winner gets two weeks unimpeded exposure online before the next story goes up. Thing is, they are running way behind now. Anyway, I was pleasantly surprised to see it there ‘in print’ and to reread it. It was a story I wrote in response to a visual stimulus from a newspaper when I was doing the Just Write course - only I had to slash it from 1500 to 500 words. I think it still works but there are a lot of unanswerable questions even I don’t know the answer to, let alone the reader. If you’d like to look, it’s here till Sunday week: https://didcotwriters.wordpress.com/blog/?fbclid=IwAR0B9S4HDCMkOkdMilAL_MVbXrRNJfcILIQLQWJahVxPtrPN38ho_zfzmeM

Given the effects of chemo on the brain (Basically it turns it to mush - though I did complete the Times crossword for D the other day), I can’t see much more creative writing going on. I’ll stick to my sudoku and futoshiki.

235. Here we go again...

 The poison has arrived, hopefully all in small tablets to make it marginally less of a struggle. Calculation: 12 tablets twice a day for 14 days = 336 tablets. Dennis took delivery and I said I didn't want to see them till I have to so I’ve no idea how big the bag is. I didn’t want to look so I wouldn’t think about - how naive. It now hangs like a dark cloud over me.

The “week off” was a complete con. The stuff continues to work its evil magic in the system for several days. By Wednesday, I was back in zombie land, only this time with emotions. I did manage a bit of a cry which is a huge achievement. Friday was clinic morning and I just about managed that (thank you Maureen), though my heart rate and blood pressure scores were rather high. Obviously I hadn’t got enough corpuscles back yet. Then Saturday evening, out of the blue, the capecitabine diarrhoea struck. Come on, this was meant to be my week off!! And I still got talked into sticking with this treatment, rather than an IV of paclitaxel which I would actually prefer.

I’ve been warned by Dr U that the second cycle often proves most difficult. I’m grateful for the heads up but it does lead me towards pessimism - can I do it? How can I swallow more pills when they are making me feel so shit? Can I finish the course? I have to change my thinking. In the last couple of days, I’ve definitely noticed some changes. Dr U suggested my eye was looking a bit better but, as all I could feel was the pressure of the swelling, I batted that aside. However, I took a photo and compared it with my eye before I started the drug and yes, there is some improvement. I can also feel the skin lesions on my chin and back hairline are slightly reduced. Right, that’s positive. That’s a good reason for keeping going with the treatment. I’m just not looking forward to the runs, which I didn’t get first time round. After Saturday, I’m less hopeful I’ll make the same lucky escape.

Time to get realistic, pack an overnight bag and start taking my temperature. I do NOT want to put D through the nightmare of another bout of neutropoenic sepsis. 

I’ve been thinking a lot about this matter and I’m still undecided BUT this blog was intended as a light-hearted way of getting me through breast cancer. If I read back, I will notice so much ignorance and naivety in my defiance. “It’s just a disease.” I was so sure this wasn’t ‘a battle against cancer’ and all those other clichés. This was just going to be dealing with whatever shit came my way till I got better.

Things have changed. Cancer now has to be regarded as part of my life - it found permanent lodgings, though hopefully it may get evicted now and then. Is this the right platform for me now? I know there’s only so far I can be open and honest without a little (big?) part of me breaking. So I foresee just weekly posts of whatever misery I’m experiencing (and believe me, there’s a lot of misery) which won’t make for interesting reading. Having said that, maybe I owe readers an update at least on this one try at treatment.

If you’ve got an opinion, email me at jansterjb@gmail.com (not you, Trina, Sheila, Lesley, obviously). I’d love to know who reads this and why. I’m especially intrigued by Portugal...

234. I need my little red cells

Comparing this experience with my first, I should be saying this first round has been a doddle. Look at me standing still and, apart from a slight stoop, I look no different: hair glossy and not falling out, skin not affected apart from layers of my lower lip vanishing daily so it’s a bit sore. The main problem, apart from the swollen lips and lisp, remains the sheer number of bits of tablets I have to take (which, if I let my mind head that way, feels overwhelming) and increasing exhaustion, hence the slight stoop. Breathing feels a bit laboured and I ache with weakness. Only 8 more doses to go, I can do it. 

I daren’t even think about next month. Monday, I was ready to just ring the breast care team and say I couldn’t manage it any more. I’ve stopped using the lorazepam with the morning dose (good, I don’t want it to stop being effective) and today I’ve even stopped the morning cyclizine to see if there’s any nausea. It is as I expected - all in my mind. 

So Monday was almost-breaking point, with a mild panic attack that night. One of the pieces with a sharp edge had scratched my throat. Tuesday I came to my senses - then I took my night time lansoprazole (which is a largish capsule) and it wedged itself across my throat. I tried coughing. Nothing. I tried drinking water. Nothing. I tried bending over and coughing. Nothing. I tried a DIY Heimlich Manoeuvre. Nothing. By this time I was retching like nobody’s business and I haven’t retched since Guide camp when I was 14, the very start of my lifelong phobia. 56 years retch-free!  I just resigned myself to the fact that I was going to have to be sick to shift it (too risky to let it dissolve and slip into my windpipe). Me??? Be sick??? I felt like suddenly I’d grown up. Survival came before sickness. I always thought nothing would. Anyway. The fates were kind and the next retch brought it back out, A minute or so more and it would have dissolved so maybe I could have swallowed it but I think it was wedged across my epiglottis so maybe it was for the best that I rescued myself.

And Dennis slept through the whole thing. 

So now I’ve moved the routine earlier - 8.30 food; 9.00 tablets, I refuse to choke to death and my husband sleep through!

And I’m still as phobic as ever about being sick. 

Meanwhile, I have the Oculaplastics Department of Ophthalmology sending me an appointment. No way am I going anywhere near that place when I’m immunocompromised - they can wait. I’ve had a letter from Gynaecology explaining why they aren’t going to follow the CT scan up AND another letter from Gynaecology giving me an appointment over the phone. Can they do ultrasound remotely? Are we moving to self diagnosis? Do the words arse and elbow come to mind?

Bear with me. I can’t tell you how tired I am and I’ve 8 more doses to go...