258. A bit down

Just a quick update as there’s little to report and too much to reflect on. I had a phone consultation this time, to help with the hospital’s appointment congestion. It was too soon for the CT scan results, though Dr U would have pushed for them. However, I’ve got the head MRI next Friday so I guess he’s waiting for all the results. As it happened, I was on the phone with an oncologist new to me, a Dr Z who sounded about 10, and Dr U rang the landline. So much for saving them work.    

Maybe it’s because I didn’t have a face-to-face consultation, but I don’t feel so confident this time. I’ve nothing really to go on except my markers have risen a bit (first real change in 16 months, which is a long time for TNBC), I have a few new but tiny skin mets - and an uneasy feeling that doesn’t sit right with me. I’ve got to make sure I don’t spend 3 weeks in perpetual anxiety, which is what a lot of women do (according to my Facebook groups) and I mustn’t try second-guessing but it’s way too easy in Cancerworld.

Meantime, the piece I wrote about NICE and Trodelvy, which I adapted and expanded to meet the competition requirements, got me longlisted (20 out of 1100+ entries) in an international competition so I was dead chuffed about that. Unfortunately it’s not inspired me to write more. I guess I was so furious that I had to find an outlet then (the competition is called Furious Fiction) but now NICE has reversed its decision on Trodelvy and it’s there waiting for me if and when I choose to have it (a big IF, since vomiting seems to be common!), I’m back to the usual lethargy. To be fair, it’s been a lousy week, the 2 heatwave days sandwiched between frequent bouts of the Cape runs - it’s so enervating. Aaaarggh!

Now I need to find a jolly picture to brighten this up. I give in. THIS is what I want:

257. Knees bend, arms stretch…and YEAH!!!!!

 

Today I participated in a pilot online exercise class set up by Look Good Feel Better. Here’s our instructor (I’ve ‘disguised’ her as I don’t have permission for the photo). Now, to me, this is a picture of an exercise zealot, absolutely ruthless - and at the end of the 30 minute session I felt that I’d been through the mill.

The exercise demon

So, what did we do? Most was done sitting on a chair, for a start! All it involved was constant movement and stretches, set to 1950s rock’n’ roll.  Nothing that the average cancer patient would find demanding and I can imagine feedback may include requests that it’s stepped up a bit. I was fine doing the stuff sitting on the chair but then we had to stand up and use the back of the chair for support. Unfortunately I’d placed it on a folded rug (folded to preserve it from Del’s claws - what a waste of money). It wobbled, I wobbled. I even tripped ! At the end though, I was quite proud that I’d stuck with it to the end, especially as the first couple of exercises triggered my bowels and I was perilously close to dashing to the loo! I worked through it, thank god. So now it’s…will I join in regularly? I’d prefer something once a week so I had a routine because I am dreadful when it comes to exercise. The laziest cow you’ll ever find lol.

I got a call today from Radiology later on. I have my MRI booked for 29th but had heard nothing about the CT scan. Anyway, they have a cancellation tomorrow at the civilised time of 11.30 and the lovely Lisa (she who does not live next door any more) is taking me. So now I have to convince Dennis that I’ll need to take my medication earlier, just for once, as I can’t eat for 3 hours before a scan. That’s going to be a challenge for him. Change of routine and Dennis don’t mix.

Apart from that, it’s been watch this space, except there is no space because our PM doesn’t have the humility to look at what people really think of him and do the decent thing. Does he really think he can hold on till September? Last week I was sickened by the lack of contrition, self-awareness, the horrific sense of entitlement… I could go on. Personally I don’t think much of any of the candidates but I guess I’m Team Sunak - better the devil you know? But he’s already stood up to a lot of Tory MPs, holding his ground on taxation, so I can’t see him uniting the party. I could see him being a dignified leader though and maybe for now, that’s what I’d like to see. Johnson has shamed himself, his position, his country. If you’ve ever had the misfortune to read his biography of Churchill, his ambition to be the next Churchill creeps through every chapter. Ugh. Fortunately he’s failed. And I was delighted to see Javid fall at the first hurdle - I can’t forgive him for ruining my privacy and peace of mind. Sitting in the garden is shit now. Noise, noise and more noise - and of course I’m a sensitive little soul nowadays. I find ambient noise impossible to cope with nowadays. Do I blame chemo or age.

Speaking of which, Happy Birthday tomorrow Lesley. I’m guessing I owe you an email - I owe so many!! And the day brings the best news possible for me : The Guardian has reported that NICE has done an about-turn and is now endorsing Trodelvy for use in NHS England and Wales. 

I heard via a WhatsApp group while awaiting my CT scan and I had tears in my eyes. How someone can be overjoyed at the prospect of their veins being pumped with a poison that will strip them of all hair (except leg hair, I bet), make them feel they can barely get off the floor at times…it defeats me. Maybe it’s the jot of hope that it will provide an extra year or so to add on the calendar. And, hopefully I’m not ready for it yet! We’ll drag out the Cape as long as possible as I almost feel myself at times.

CT scan went well, though I asked if they’d put the contrast dye in a bit more slowly, just to see what difference it made. There wasn’t that rush that pressures your bladder so you think you’ve peed yourself but it prolonged the bit I hate - the heat in my throat went on and on. Thank god I was lorazepamed! Just a small bruise on my hand - for now!

The chamber

256. Update

 Life is incredibly dull. Highlights include getting 20% on Cyberjammies (2 pairs have to go back, they are so tiny), the glorious peonies Marilyn and Clive gave me that are still going strong 10 days later (thanks to M&S) and managing 20 lengths at the pool last week. Oh, I’ve also got a few good sunny afternoons reading in the garden and having a sunshine nap in the summerhouse!

Yesterday was my routine appointment at the oncology clinic. God knows what’s going on there but I didn’t get my appointment till 3.30 the day before - and they said 8.30! I don’t do early mornings especially on my week off meds. On the plus side, the traffic was good because it was before the school run, I managed to get a disabled parking slot, and we got there in plenty of time without my being out of puff. There was also no queue for bloods (I bled like a pig again!).

So my blood markers are 17, my tumour marker still 7. I am stable. But am I? I have a couple of small but new skin mets that I can’t see so something is going on and Dr U has referred me for yet another MRI for my tumour so obviously he’s spotted something he wants checked out. I also have my routine CT scan coming up - hopefully it will confirm no change. Dennis took my prescription down to the Boots shop and practised saying ‘Amitriptyline, Elastoplast and aspirin’ for when they asked him about my allergies and was a bit miffed because this time they didn’t ask. 

So, on Monday I start Cycle 21 of the wonderful capecitabine. I get the impression Dr U didn’t expect me to respond so well to it. There’s a women in one of the Facebook groups who is on cycle 62 so maybe……

What I don’t get is how/why I feel so calm about it. Stable - I should be delighted. Uncertain - I should be in a panic or at least anxious about the possibilities. But I just feel … shruggy.

We then sat in Costa for 70 minutes while my gigantic mug of tea cooled down a bit and then went over to Maggie’s to kill another 50 minutes before the Secondary Support Group started. I managed to locate a comfy place way out of sight of the therapists so no one would approach Dennis to see if he needed anything and he then sat for 2 1/2 hours doing nothing. I’d have gone potty!

Support group was ok but there were only 5 of us there for a visiting speaker, a solicitor from Wakefield who did a PowerPoint identifying all the legal and financial stuff we need to consider. Having met with Robert and received emails from his friendly solicitor and his PA, I reckon I have enough information but it was good to be able to speak freely about planning for our death and the aftermath. D would have had a dicky fit if he’d known what the topic was - he has just shut down completely on finances. 

Oh, I got my 5th vaccination (second booster) by digging my heels in. I’d heard nothing from my GP practice (no surprise there) and nothing from the NHS (a bit surprising) but it was 6 months since my last booster (the vile Moderna) so I went online and booked an appointment at The Village, a hotel near here. It was practically empty there. But they were only offering Moderna. I explained how ill it had made me when I had it 6 months back so the steward took me down to talk to a nurse. Same explanation, still no Pfizer. Eventually the pharmacist joined in, said the side effects were the same, Moderna or Pfizer, but given my situation I should have Pfizer. Only they had no Pfizer so I was advised to ring 119 or my GP practice. The latter didn’t seem to be an option so I rang 119. It is death by a thousand cuts. Every time I chose my option, it referred me to their website (which hasn’t been updated since March so is useless). I lost count of the number of times I pressed 2 but after about 15 minutes, I got through to a real person. Unfortunately he had a pronounced Pakistani accent and I couldn’t understand a lot of what he said despite having taught Pakistani girls for decades. I could have wept. I kept saying it was a bad line and I think he lost patience. His advice was to ring again in the morning when they might be able to find somewhere local with Pfizer supplies or to ring my GP. I did that at 2.30. I was 19th in the queue. What the hell is going on!!!

I had a good moan to lovely Trina and 20 minutes later, up popped a link to a walk in vaccination centre in Burley. What a gem she is. So off Dennis and I trundled the next morning. Same response - only Moderna. I explained my circumstances and she explained that the NHS directive was to reserve Pfizer for children and under 18s as they can’t have Moderna. BUT she thought I needed Pfizer so off we went. I didn’t even feel the injection but was asked to sit in the waiting area for 20 minutes just in case. The person who’d done the jab came out and sat with me and we just chatted for almost half an hour. She was a veterinary nurse! She volunteered when the vaccination roll out began and loves it. She thinks she’ll apply to stay on, train as a nurse maybe. It was me who tentatively suggested the 20 minutes must be up! Excellent treatment at Woodsley Road medical centre, rubbish parking! A mildly sore arm day 2 and 3 and nothing else, not even a temperature. Since then I’ve read of so many women who are on chemo and have reacted badly to Moderna. The young woman next to me in the support group said she’d had Moderna on Tuesday and today, Friday, was the first day she felt ok! It’s time the NHS listened.

So, in another week’s time, I’ll be well-protected and less wary of mixing with people - the infection rate in Leeds is still increasing! Why aren’t we back to masks and social distancing?? Everyone wears masks at the hospital (where apparently Covid is running rampant) yet I was the only one in the support group masked. Maybe it’s an age thing?