255. Still Stable Mabel

 Yesterday was hospital day, starting with the support group in Maggie’s, which I had to leave early as my clinic appointment was at noon. I didn’t get in to see Dr U till 1.10pm so I could have stayed for the full group session and still had time to spare. But I was fine with the delay. He gives me all the time I need and I like to feel he’s doing that with all his patients.

My blood and tumour markers are moving about, but so slightly that it doesn’t mean much. He didn’t think my skin mets were noticeably changing and suggested the swellings of the eyelid are accumulations of lymph fluid that maybe has nowhere to go. Then he said that he really didn’t understand what was going on himself. I appreciated the honesty. Then he said that, for triple negative bc, things were staying stable and were unusually slow. That explains why I’m past the prognosis lifespan and creating my own. I’m feeling more or less fine on cape and that’s ok with me. 

The scary thing was that, even though I read on the 9th that NICE is delaying its final decision on Trodelvy till mid-August (probably because it had such a huge public response), Dr U told me that they have been told they can put no more patients on the drug. The manufacturers will honour their obligation to anyone already being treated but have withdrawn their current strategy they have with hospitals to complete their trials. So, as a second line treatment, it’s off the board for me. Dr U seemed almost apologetic but I’ve stayed realistic - it was always going to be a risk. So now we wait for our wedding anniversary, rather than my birthday. A few wonder drugs and treatments for stage 4 breast cancer have hit the headlines this week but none of them is for me. Triple negative is a bastard.

Just look at these - tip of the iceberg too

Yes, my birthday has come around again and if I haven’t yet got round to thanking people, a huge thanks for your cards and good wishes and, to Sheila, you know me too well. What you maybe don’t know is that, when something is so perfectly packaged, I often can’t bring myself to dive in and devour the contents!

Dennis just about redeemed himself after a mild altercation the day before when I knew he’d got me nothing. Knowing how hurt I would be, he thought quickly and the next day presented me with last year’s Bryan Ferry boxed set which I’d shown no interest in (would you if an Amazon box was just thrust at you, never mind how ill I was feeling because of the new chemo??). It was beautifully wrapped in Christmas paper this time and took him 35 minutes to get it right. It defeats my understanding how someone who likes everything to be in its place and all in straight lines cannot wrap a simple square parcel in moments! Anyway, it was the 35 minutes that I appreciated most. 

Then Fox & Finch delivered our afternoon tea, intended for my birthday but she was abroad! It came beautifully presented along with a smaller container packed with little extras for my birthday. We sat in the summerhouse (a first for D) and stuffed ourselves. That doesn’t take much for me but Dennis packed it in! And we still had almost a full container to store in the fridge. Guess what today’s food will be!

Summerhouse being used at last

254. Belly-flopping

Oh the indignity of slipping straight into the deep end and ending up floundering like a beached whale! I’ve been swimming twice this week (at long last) and the things I dreaded haven’t happened. I can manage all the stairs, I don’t get as breathless as I anticipated and I wear my plastic mules to stop me slipping on what are very slippery poolside floor tiles.

Attempt 1: 10 lengths, 5 times my goal. I confess to several pauses at each end of the pool and a bit of water-walking, but it all added up. Unfortunately I started by setting off in my usual graceful fashion, only to sink immediately and flounder about till I got my bearings. I hate going under.

Maybe Sheila will remember the hours I spent sitting on the edge of the pool at the Lido, in my height-of-fashion red and black cossie, dipping my toes while she and her brother darted about like fish. I felt very left out but even that didn’t push me into learning to swim. I waited till I was 27! I remember Stephen showing off a bit, diving in where the water wasn’t deep enough. Oh, his poor chest. It must have been agony. Nowadays the lifeguard would have immediately carted him off to A&E, terrified of being sued, In the 1960s, he just got back in!

Attempt 2: 16 lengths, again with pauses.

Things I have learnt: my right knee is going, not sure where and I probably won’t be allowed surgery; kicking the side of the pool is bloody painful with PPE; I sink lower than I used to so am drinking a fair bit more water; my back aches as a result of doing breast stroke too low in the water; my eyes don’t like chlorine - they were on fire last night. Best of all, I have negligible muscle strength so when I decided to do some leg exercises, I ended up slipping under the lane barrier helplessly and had no strength to pull myself back. I felt something of a fool, to say the least.

The Platinum Jubilee is passing me by. I support the monarchy and think the Queen has done a remarkable job, though I do think she should have abdicated years ago, once Charles was settled and grown up (ie a couple of years ago). I’ve got no time for all this press coverage and no wish at all to be adorned with Union flags which, to me, reek of jingoism. The highlight so far as been seeing Boris Johnson and his wife loudly booed as they entered St Paul’s. The lowlight so far has been the street party yesterday on the new estate. I am sure it was a community gesture and the children loved it but the pounding of unidentifiable music lasted from 11am to 9pm. Even my noise-excluding earphones let me down. I am an old curmudgeon, ready to join Dennis in his curmudgeonliness!

This cycle (19) has been the easiest so far. I’ve had days on bed but that was more mental than physical fatigue. My skin mets continue to harden but they are taking their time, thanks to capecitabine. My tumour may be stable but the fluid and lumps it produces are more obvious now and I have to keep massaging my eyelid to get better vision. There is nothing wrong with my eyesight, it’s just a pressure they put on my eyeball. I’ve also noticed the tiniest of changes deep in my nostril, as though there is now some pressure inside there, and the slightest of aches, but noticeable. I don;t know if this is the chlorine or if it’s what I have to come.

See - not so bad.
Who would think this is breast cancer!

My appointment is next Friday and of course it clashes with the secondary support group. I’m planning to go to the first bit so D will just have to stay at home (he won’t) or sit somewhere quiet in Maggie’s, hoping no one offers to talk !

Meantime, don’t take a leaf out of my book - enjoy the Jubilee. Maybe it’s because I was taken to The Mall to watch the Coronation and that was enough for me. All I remember is we had two Coronation mugs and I had a Coronation money box in the shape of the crown, but apparently I sat on my godfather’s shoulders and waved my Union Flag enthusiastically.