254. Almost all good

Yesterday, Den and I went to the oncology clinic and came away satisfied. I’m not sure if I have it in me to be happy and assume this is it, all good, for good.

My blood markers are down to 17 from 19, ridiculously low since people without cancer can have up to around 35 just from secretions from other types of cells. But my tumour marker remains at 6 which indicates it’s still active. I assume the capecitabine deals with the potential damage. Assume? Why don’t I think to ask these questions! Dr U believes my tumour and skin mets feel softer still (not to me) and he’s pleased with my progress. I asked when my next CT scan was and he said Radiology had emailed them all that morning to say there is a 13-week wait for scans. He also said he didn’t think I needed one (now that I DO find encouraging) but still put me in for one - I guess that will take me to the 5-6 months mark, if appointments are being delayed that much. I still have no faith in CT scans when they can’t pick up the known signs I have of SBC but I guess I want to keep an eye on the lung nodule and hope nothing new appears.

We talked about all my side effects and he apologised and said they are all related to the drug. He could reduce the dose a little more or give me a couple of weeks off to get my breath back (literally) but he would prefer not to as we (?) are doing well right now and a change could make a big difference and even mean cape stops working. But he said my immunity was as good as it would ever be and to get back out there (real world with people in it) as often as I can. So, let’s hope I’m fit for book group on Wednesday, though one of the members has offered to pick me up if I want that.

Make Seconds Count has a custom that
we upload our waiting room shoes.
This is a different take. Ancient Doc Ms

As threatened, I took Den along with me so he could hear for himself that things are going fine. Dr U said that sometimes it was worse for partners - I am taking my pills and doing what I can to keep the illness at bay, knowing I’ve made the right decision; he may well feel helpless and out of control, knowing he has no idea what lies ahead and he can’t help. He bloody well does help - he’s removed almost all daily chores from me, partly because often I can’t wield the ‘tools’. You should have seen me buttering some toast yesterday!! Den admitted he’d stopped doing all the things that gave him pleasure before. He could gain no pleasure from them. PROGRESS, he’s playing the new Robert Plant/Alison Krauss album very loudly so I can hear it too. It’s wonderful - their voices are so different but they go together and their choice of instruments is gorgeous. Love it. Unfortunately I have no means of playing it now my laptop is defunct. Who’d have thought CDs would become defunct!

I’m definitely losing the plot though. I’ve resorted to a Christmas card for D from the cat! I can almost see Del rolling his eyes (but he doesn’t know I’ve got him a new cushion with his name on. What the hell is happening to me???). I don’t know if I mentioned it before but my present from D will be a monthly delivery of flowers for a year. The problem was, he couldn’t work out what to do so I ended up ordering my own present yet again. Oh, he’s well trained but I’ve failed miserably over 50 years on the present-giving front. Enough D-battering. He’s a treasure. 

253. Same ol’ same ol’

It’s strange living with something you can’t ignore. I mean the disease, not Dennis. While I wait 3 more days for the best flu protection, it’s still like life during lockdown. I’ve got only two more doses to go and I’m done with the tablets for cycle 10. Then I need to wait for the side effects to ease off.

I have booked a reflexology session for Wednesday, my first since January 2020, though it doesn’t seem that long ago. Poor Caroline will be in for a disappointment. My “baby-soft feet” as she used to describe them have changed a bit. For a start, she might need sunglasses, my heels are so pink. Then the bulk under my heel seems to have reduced and I’m left with wrinkled and hardened skin, not comfortable to walk on. Still, I’m sure she’s worked with worse and I’m fortunate the PPE hasn’t got much worse. Women in the Facebook Groups who are on capecitabine have lost nails, have weeping sores and can’t walk. Sorry, but this is the reality of the treatment. So yes, I’m fortunate.

Any idea?

I’ve been walking round the house most days, rather tedious but I’m discovering all kinds of toadstools. Maybe it’s time to look them up. I probably knew all about them from Girl Guides (such a lot of handy information, most superfluous now in the days of technology. How often do you wrap a paper parcel? Or need hospital corners on your neat bed? I can still distinguish between a Horse Chestnut and an Oak from a distance but I can’t find a practical application for such knowledge now lol. Stilll, it earned me a few badges at the time. I wonder what happened to my postcard collection (for Collectors Badge). I had over a hundred in there, some dating back pre-WWI. Ah well, gone the same way as my Edwardian silk and lace blouse which belonged to Great Great-Granny. I never knew how to look after treasures. Back to the toadstools: probably most are edible but I’m not one to take risks. I’ll let them disintegrate with time. 

I’m close to renewing my gym membership but I think I need to dip a toe in the water first (a pink toe). I hope to meet up with some friends at Cookridge Hall, just for a coffee and chat, as a start. I’m only used to being surrounded by people with cancer, which is rather a sad comment. Not that you can tell. Most look quite healthy but you can kind of see those who are nervous about having a scan, waiting for results (scanxiety), the newly diagnosed. You get a feel for it and there’s nothing else to do in waiting areas except people-watch.

Thinking of scanxiety, I suspect joining the Facebook groups has been an advantage and a disadvantage. It takes up so much time. But I learn a lot, like there’s a secondary breast cancer group that meets regularly at the Maggie’s Centre so, if I can drive, I’ll go to the next session. However, I’ve noticed that my thoughts are sneaking to places I’d rather they didn’t visit. I’ve read so many posts written by women devastated that their treatment is no longer working and I wonder… Then I reassure myself that, if my blood results weren’t good any more, they would ring me and get me almost straight onto second line defence, the vile paclitaxel. But I know next Friday I’ll have just a tiny seed of anxiety till I’m told everything is still fine. I should say we since I’m taking Dennis so he can hear for himself that I’m not underplaying things and everything is (kind of) ok. He still looks at the dark side of it all but what’s the point? How does anyone benefit from it? 

I’m not all sunshine, don’t think that for a minute. I’m driven daily by the state of my bowels and the level of weakness I feel from fatigue. Even now, when I’d say the side effects of cape are very manageable, I still have days in bed, just watching tv, not even reading. However, along with four times round the house (1000 steps) I’ve also read a chunk of Jack Reacher (how do they think of these plots???) and I’m going to pick up my knitting again.

Ok folks, that’s my update. More news after clinic on Friday. Fingers crossed please that it’s happy news.

This brave and hardy beauty has survived into late November!

252. I’m all in one piece again

 I’m sorry I haven’t posted anything recently. My mind is in a strange place right now and everything feels such a chore, too demanding mentally, so I let it go and keep my mind almost numb. I guess it’s a delayed reaction?

So first the cancer. It’s all going to plan, my markers are very low and, more important, stable. My tumour has shrunk a little but unfortunately is still cancerous so is able to send out those nasty cells to settle elsewhere, but there is no evidence it’s doing this. Let’s keep things as they are now.

I truly resent taking the oral chemo and dread next Monday evening when I start cycle 10. It’s not that it makes me feel ill any longer - fatigue, an empty head and pink hands are the worst I have now - it’s the knowledge that I have to keep doing this twice a day for two out of every three weeks indefinitely. Not even a reduction in the number of tablets. Dennis is in charge of the tablets and my heart sinks when he brings the tray with food (essential), drink and tablets. I mean, how would you feel about swallowing 9 pills that apparently are so toxic you have to flush the lavatory twice (so much for helping the planet) and wash your hands after handling them? It feels surreal. I try to numb out, like I have with a lot of information about the future, but it does get me down.

However, almost everything the CT scans have thrown up (something new every time) has remained unchanged, meaning it’s benign. This includes my fractured sternum which they were concerned about, the gynae stuff (apparently I have 4 cysts on my right ovary) and the lung nodule. Had they shown any reduction, that would have indicated a response to the Cape and indicate they were malignant. So it’s just this cute kidney bean across my nose/eyelid and the skin mets on my neck and face, all softening so definitely responding. Sadly my eyelid apparently will not improve, apart from the lumps softening further and maybe in a year or so disappearing. It will remain numb and not move when my other eyelid does - best noticed if I do a Princess Diana and peek up through my rather sparse eyelashes. Otherwise, you wouldn’t notice unless looking for it so maybe I can stop hiding behind my glasses and start experimenting with me eye makeup, now at leat 2 years old!

 I’m living a life of lethargy, tho I do pick up when we get visitors or Carol takes me out for a coffee in Chapel Allerton. A real, bustling world (although she gets very anxious about if there’s a risk to me, bless her). I’ve also been to the hairdresser’s and had my hair chopped of. I’m toying with the idea of lavender and steel grey high/lowlights. I love the idea but the thought of sitting there for hours… maybe not. But I have to have something on my bucket list!!

We got our flu jabs last Thursday. I’m rather cross with my GP practice. I rang and explained I had to have my flu jab within about 3 days in a specific week and was told they had no supplies so could make no appointments. Ring back next week. I did. All appointments now gone. This was after someone had noted I needed a vaccination in a short space of time. I feel a complaint to the practice manager coming on! 

Booking a pharmacist online proved useless but one of my book group friends mentioned she’d just walked into her local chemist and got her jab. I gave them a ring and the pharmacist was happy to book us both in on the perfect day - time for it to get to work on those antibodies before Cape starts destroying all the cells.  I do remember how blood works from O level Biology. I know my lymphocytes from my phagocytes but no one even mentioned cancer creating defiant cells that can resist of treatment so that’s where my understanding stops. I’m guessing I’ll have some immunity.

I’ve never had a reaction to a flu jab. Maybe it’s the fact that we’ve been isolated for so long. I developed a splitting headache and was exhausted when I shouldn’t have been. It only lasted 24 hours though.  Dennis got pins and needles in his hand and his arm felt very heavy - and still does, 4 days later. Maybe that’s because he’s part-way through coating The Shed? I’ve given up with Mercia, the manufacturer. Alan has been a gem. He added the turn buttons Mercia sent, glued and clamped the split wood and has said it’s best left now till late Spring when he’ll plane the warped doors that barely shut now.

I’m having second thoughts about the FaceBook groups. They’ve been a fount of information and experience but so many people are experiencing such awful things, part of me just doesn't want to know. Is that selfish of me? I’m happy offering support for people just being diagnosed with bc and people going though treatment but I can’t identify with anyone further ahead of me in the secondary bc stakes. I know it will happen one day but for now things are relatively ok, apart from the pill regime. 

No more writing stories. I’ve battled with Microsoft which caused the loss of all my Word documents on my ipad. I’ve battled with Apple, to whom I pay 79p monthly for cloud storage on the understanding that everything is backed up regularly and automatically. I was so sure everything would be safe in the cloud but no, Apple only stores your last and previous back up. Everything gone. But wait, I have some on my old laptop. Dead as a doornail. Ok, buy a new battery - it doesn’t fit even though it’s a repeat order (boring story). Buy another battery and, like Cinderella’s slipper, it fits perfectly and it starts charging. But the laptop refuses to cooperate and switches itself off. Persistently. I’ll have to take it to a computer specialist, pay more than the laptop is worth to get it fixed and gain access to my older writing at least. I haven’t written for months. Is it worth it?? Lesson - never rely on those Clouds and OneDrives. They don’t store your stuff, they save over it! The tears threatened but they didn’t come.

So that’s one cheerful update. Why don’t I just say “All going to plan”? because I’ve no idea what the plan is. Who does? Just never try to comfort me by saying we could all get run over by a bus. There’s a big difference between being aware of a remote possibility and knowing that bus will be coming but having no date.