287. Looking…not so good

Kitten talk later!

Excuse not to make the bed

Went to clinic Friday and saw Dr O. My MRI scan shows no change from the previous scan, which seems remarkable, as well as being excellent news. The report on the CT scan wasn’t available, which was somewhat frustrating. The big problem was that my tumour marker had shot from 67 to 93 and, since this is definitely a sustained rise, it can’t be explained away by inflammation. She’s convinced something is going on somewhere and obviously expects the CT report to reveal some metastasis somewhere in my main organs. It’s not in my brain, So…liver, peritoneum, kidney, heart? I feel fine (we 231mghsxnnbgd - Laurel having a go at the keyboard!). Yes, apart from exhaustion caused by Cape, I do feel fine.

So I foresee a mini-battle of wills. Dr O wants me to start a new treatment. She thinks we’ve spent enough time on Wait And See. She is thinking of paclitaxel. My repeated question is what is the point of paclitaxel when it didn’t work first time round? I’ve agreed to stop taking Cape (hoping it’s just a break) so I have 2 weeks, one of which should be comepletely chemo-free. I’m so used to fatigue now, I can’t imagine feeling more lively now! Meantime, she’s sent a request to Dermatology for a biopsy on the largest o my skin mets and she’ll take my case to next week’s MDT meeting. Apparently there is a new (unpronounceable) drug available that they might consider.

A major problem seems to be the fact that, originally, I had two different cancers, one hormone receptive, the other triple negative. Since my TN has not been behaving to type, she wonders if the hormone-receptive cancer is asserting itself now. Till now, we’ve assumed it was cured but there’s always a possibility. That would be just my luck: greedy to get two different cancers in two tumours in 2018; optimistic to trust the end-of-treatment CT scan that declared all was safely dealt with in 2019; trusting an MTNBC diagnosis, naively assuming that was that in 2021! Now I face a major change, one I don’t fancy at all. I’ve got used to the sense of normality you get with capecitabine and now face weekly IV chemo for a minimum of 18 weeks if it works, possibly indefinitely. It will have to be taxis as I don’t have many people to ask for support now - most are tied up with grandchild-duties, my goddaughter is about to explode (with a Baby Pea to show for it), there’s only so much I can ask of Lisa. I hate this loss of what I see as control :(

So I go back in 2 weeks to hear the decision. I can’t really ask for a second opinion as it will have been discussed in the MDT where all the big shots are. Dr O is not taking an artbitrary decision. I shall have had a phone consultation with the patient advocate for clinical trials on Friday but that may not help as we don’t know what cancer we’re dealing with now. And meantime I’m left with this sense that, from now on, it won’t be progress, just maintenance at best. I’m not aware of anyone who’s made this move and come out of it well.

Long pause while Laurel sleeps on iPad, then on me, so I’ve been immobilised for over an hour. Thank god for Wimbledon!

She’s settled way better than I expected. Yes she’s very vocal but she’s also very affectionate, playful and curious. She has already got the upper hand with Del so we’re keeping her out of his two rooms downstairs so he has some sense of territory. She loves to sleep snuggled up to one of us and frequently I find myself stuck, which is no hardship. 

All in all, a very good choice. Poor thing doesn’t know she’s being spayed tomorrow :(

286? Want readers? Mention kittens!

 Honestly, it’s surprising - my readership tripled just because there was a cute kitten. That’s a sad comment on my reality but why should people want to read about misery, chemos and deaths??

So let’s start with Laurel. She is indubitably cute.

                                                 

She also loves laps but you need to be wearing double denim to avoid bloodshed. I sit with her in my lap and it can be so soothing - till the tiny claws come out as she stomps away!  She tolerates being picked up but has found her feet and scuttles off. We collected her Sunday and that was it really. She refused to come out of her carrier. I ended up tucking some food in the entrance to the carrier and she wolfed it down and bolted back to the furthest crevice she could find in the bag. She came out about 10pm and had a quick explore of the room but when I introduced her to her litter tray, she just flopped in the Catsan, looked round and had a quick nap. Not what I was (wisely) hoping for. I switched on a soft lamp, as advised, and left her to it

Then I made the fatal mistake of checking in on her. Well, she needed feeding. She’d vanished. No exaggeration - I looked everywhere, even the 2-inch gap between bookcase and part of the wall, and she had bloody gone, Eventually I got D up - he’d been sound asleep for 2 hours. He must have popped in and she sneaked out. No. So we searched high and low.She was nowhere to be found.

It was impossible to ‘lose’ her, so I returned to her home, sat on the camping chair (no way could I sit on the floor and play) and decided to Think Cat. There she was - tucked into the tiniest space between wall and shelves!! Did I feel stupid.

Next day she was very venturesome, first of the bookcase shelves, then of the other upstairs rooms, but she showed no interest in the unused litter tray. She ate her 4 tiny meals of raw rabbit, showed more interest in nooks and crannies than any cat toy, happily came into the bedroom in the evening - I expected her to use her new cat bed but nope, nooks and crannies again. Then she began clawing at the duvet cover, which has a very clawable strip of fabric in it so I carried on watching TV. The she was mewing so I picked her up for a cuddle and she was WET. A whole day of kitten-pee released on the bed - duvet soaked, sheet soaked, mattress protector soaked. Thank god for the mattress protector. My clothes dabbed with wet pee-prints, a small pool on the carpet… kitten disaster. Den shoved everything in the wash and then proudly announced that Laurel appeared to have used her litter tray. Too late mate! NOT impressed. So I’ve ordered some wood-chip litter which the fosterer used and hope she’ll get potty trained soon!

I got a cancellation appointment for my CT scan, less than 24 hours’ notice but who’d be daft to turn that down! Lisa took me to Chapel Allerton Hospital and I was in and out in 25 minutes! Good job too cos there are zero facilities, not even chairs to wait. I ended up waiting for Lisa, sitting on a damp wall in a drizzle, admiring the old grounds and regretting the loss of the old hospital (where I had my fibroadenoma removed decades go. Even the new building is old and weary now! I doubt the results will be ready by Friday but you never know.

I’m managing ok. Still dog-tired, napping etc. I hope the MRI report will shed some light on what is or isn’t going on but what we lack is a new biopsy. Ophthalmology rang last Monday to ask if I could go the next afternoon for my eye procedure. As I’d only just arranged my emergency dental appointment, I said no. But I rang the next day as something didn’t feel right. 

Could she check me records please? Yes, I was down for corrective surgery on my eyelid. 

What about the biopsies? There’s no mention of biopsies.

I have a letter here which Mr K was sent on 5 May and it says….           Ah yes, there is a letter but it’s about your breast cancer.

Yes but my tumour is in my medial canthus and affects my eye. It refers to Mr K on side 2.  Would you check if there is any email please. No email.

Would you check 5 May specifically please as I watched my oncologist write and send it. (Awkward silence) Oh yes, there appears to be an email. (For ‘appears’ infer that it’s not been opened)

And does it request 2 biopsies at the time of corrective surgery? And would they be done under local anaesthetic when I was told last time that a general anaesthetic was essential because it was close to an artery? Leave it with me. I’ll email Mr K and get back to you.  End of conversation.

That was 2 weeks ago so I had this bright idea that I’d bypass the horrid Ophthalmology Department, new building or no, and go private. One practitioner - Mr K. Sod’s Law.

So I’m not holding my breath. I’m going to ask Dr O to try again and maybe put in a soft complaint. 

Friday was strange. Normally I’d go to clinic. Instead it was just Secondary Support Group. We had  few new members and someone came all the way from Edinburgh for  45 minute chat about clinical trials. It was very interesting tho I’m not sure I learnt much that was new. I must sign up for a phone chat about what trials may be available to me. I say may. Remember I failed all the entry tests at diagnosis? Hence the need for a fresh biopsy. So, here we all are at Maggie’s, anonymity require. Look how shrunken I’ve become - I thought I was sitting up straight this time!!

And I woke today with a pool of dried blood in my hand and blood around the nails of 2 fingers. We assumed the kitten must have scratched me and the blood thinners were at work. Sadly no - it was the open skin met on my face. I was so still in my sleep it just bled into my hand. Something else for D to worry about…

OK, the new cat litter has arrived. Time to experiment!