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?