258. First the good news

Great news. My kidney has been restored, my lung nodule had disappeared (so you can have infection/inflammation and be oblivious to it) and everything from my thorax to my abdomen remains the same. My blood marker has risen to 18.7 so that’s all stable, and my tumour markers have risen to 7, still within safe limits. My other blood results, way beyond my comprehension, are good. 

The bad news: I have to have another MRI to compare my tumour with September. I also have gained a new skin met and some of the others are hardening again - during chemo. It may mean I have to change my chemotherapy but I’ll wait for the MRI results first. Maybe the eye changes are to do with reacting to the tumour, not more cancer.

I also had my 4th vaccination, my booster. My GP practice of course couldn’t accommodate me as I need it at a specific time, ideally halfway through my week off. They advised me to try the Elland Road Hub. Well, I remembered the day and a half of not getting through but I tried again and got straight through, She was really good, understood my problem, looked up my records and said my immunity ‘ended’ Thursday so would I like an appointment Friday???? I was gobsmacked. I had clinic and bloods to do but she suggested 2.35 and Lisa yet again drove me. I was fine driving to the hospital but the thought of the Armley gyratory left me quivering in horror. It is close to where I worked so I needed to use it a lot and I’d say 50% of the time I found myself heading back to town or stuck on the motorway because I got in the wrong lane. No way was I up to driving there. I was gripping my wrist with Lisa driving - too many lorries and big vans either side of us!

When we got there, Lisa asked if she could park on the road, close to the entrance, as I was having chemotherapy. Well, I was treated like royalty (or a poor frail woman) after that. I registered, moved on to the next bay for a medical person to do my preliminary check, a steward brought forward a chair so someone must have rung through! I was told I was having Moderna this time so there was much less likelihood of a repeat of the mild flu-y symptoms last time. Then I moved on, was injected and told that, as I wasn’t driving I needn’t wait. The great thing was seeing so many children there, mostly high school, waiting after they’d been vaccinated. I could imagine school saying you can have last period off if you pop into the vaccination centre on the way home! AND Lisa was waiting right outside.

I felt fine after that. The irony was that, within an hour, my GP practice rang to say Dr L had given the go-ahead for them to offer me the vaccine at my convenience (not had a reply to my complaint yet but maybe it’s had an effect?) Then maybe 11.30, my skin began to crawl so I decided I’d get to bed and try to sleep through it. I woke half an hour later with rigor. Fortunately I recognised it from when I was admitted with neutropoenic sepsis in 2019 so I didn’t make the mistake of thinking it was a weird panic attack. I used the relaxation technique from Progressive Hypnosis and managed to stop the violent shakes after an hour or so but the inner shakes took longer. My Fitbit showed I was asleep but actually I was just mentally relaxed as I fought the shakes. Then I started hallucinating. It was totally surreal. I didn’t know if I was awake or asleep and couldn’t move. I stayed like that till 7am, after which, with a glimmer of daylight, it felt safe to sleep. What a night. I can safely say I have never felt so ill. I’ve been worse, as in 2019, but then I didn’t feel ill, I just was ill.

When I woke I was utterly exhausted but felt that ‘crisis’ had passed. Anne popped by in the afternoon so I had a chat with her, door open and safely distanced and I was able to give her her Christmas present at last. I’m still in bed, obviously a lot better, no repetition of the rigors. The oncology nurse rang me this morning to check I was ok and seems happy enough so I think that’s over now - and better than catching covid.

And that’s my life - a catalogue of medical stuff. I need some more people. But I have two more weeks before I can unleash myself on the outside world - and I don't know all the rules because they’ve never applied to me.

257. New Year - where’s the Happy?

You may remember my early determination not to resort to a pity party. Well, I failed miserably.

We went to Kevin and Carol’s on Christmas Eve, which we’ve always done but missed last year. D did his first Lateral Flow Test!! Chocolate gateau and tea/coffee with a good chat felt almost normal, apart from my having to wear my mask when not eating. Carol gave me some beautiful antique roses which are still thriving. I sometimes think they do best when neglected!

Someone knows me well!

Christmas Day was beyond awful. A lot of those thoughts I kept boxed away safely crept out. Underlying it all was the dreadful thought - what if this was my last Christmas? It was going to be pretty crap anyway - Dennis had obviously decided that the monthly bouquet (which I had to organise) was enough so he presented me with a drawing of my favourite Banksy picture (no message) and added sprouts to our usual Sunday roast! I don’t know why I ever hope for more. Anyway, once the thought had escaped - this could be my last Christmas - I got this weird idea that if I didn’t acknowledge it, then it wouldn’t be Christmas and couldn’t be my last. Confused? I was. The result was I didn’t open a single present and didn’t switch on the mini-tree. The Christmas cards were up but that was it. Christmas didn’t happen.

I can honestly say it was one of the unhappiest days I’ve had. I was in a mire of misery. Fortunately, it felt safe to open my presents on Boxing Day and I got some lovely, thoughtful gifts, including a heated button up shawl to wear, along with my cosy blankets, in The Shed. All I need is one of those Victorian footwarmers and I think that’s every inch apart from my nose covered!

Bank Holiday Monday, I was scheduled for my CT scan. So much for the 13-week waiting list Radiology declared they faced and so much for not needing a scan this quarter. My appointment was 5.30 and Lisa was able to take me. That was a good job as everyone else was still away or sozzled by Christmas spirits. I got a phone call at 9.30 asking if I could go in earlier as my file says Difficult to Cannulate. Will I ever lose that reputation?? Earlier meant as soon as I could manage in the morning! I dragged Lisa out of her lie in, had a quick shower and we were there by 11.15. By 11.30, I was cannulated on the first attempt SO THERE! I am NOT DIFFICULT. The CT scan was fine though I’m never prepared for that surreal rush you experience when they inject the contrast dye. In this case, because I couldn’t understand a word the radiologist was saying, it was so distorted from their safe distance. Anyway, I get the results on Friday - and I told him to make sure I had two kidneys. Actually, the nurse who cannulated me checked and their record has been amended. Odd that Oncology is left with the original but with a neat line through the word ‘kidney’.

My first bouquet arrived on the 30th so D is partly forgiven. OK, I chose it but it is stunning. The 30th would have been Mum’s 94th birthday so it felt kind of special. Then came New Year’s Eve and at 3pm, straight after lunch, I was struck by capecitabine tummy - cramps and more cramps. Without exaggeration, I spent three blessed hours on and off the loo, and spent the rest of the time in a miserable ball of pain. The problem is, it would be easy to take loperamide to stop the diarrhoea or Buscopan to stop the cramping but it’s only delaying the inevitable. New Year’s Day wasn’t much better - it hit as soon as I’d taken my evening tablets. I’m embarrassed to confess I watched Taskmaster from the en suite loo. Oh, is nothing sacred once you get cancer??

I was also upset by what a friend posted in our small WhatsApp group: “Well ladies, it’s cheerio to 2021, it brought challenges but we’ve all had a lot to be happy about. Here’s to 2022…” Excuse me? A lot to be happy about? I really thought hard about that one and the only thing I can think of that she would think I could be happy about would be the good response to chemo. But I’d have been a lot happier if I didn’t get the diagnosis, if I didn’t suffer from the side effects and if I didn’t know it can stop working at any moment. I know her. I know she meant well and probably meant it to be encouraging but it didn’t work. I was angry and disbelieving at first. Now I just feel sidelined.

So now we wait for Friday. It’s bad timing because it means I can’t go to the support group this month. I’m not expecting anything different as the CT scan doesn’t show skin mets but I’m not happy with how they are doing. They don’t seem to be reducing in size, 12 cycles of chemo regardless. I’ll need to ask Dr U. I also need to ask for a referral for some emotional support. It feels too soon for a hospice referral but that appears to be the route and it will mean I can get therapeutic treatments like acupuncture and reflexology and join art groups etc. Am I ready for contact with my ultimate destination? I’m not sure how D would handle that.