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!

285. Persistence pays off….

 I can’t begin to describe how excited I am. Next week we’ll have added little Ivy to our home (renamed Laurel for reasons far to complex to explain but suffice to say the musical theme continues and there’s a link with Françoise Hardy, the Dennis equivalent of Bryan Ferry). She’s about 14 weeks old and apparently very affectionate, gets on with all the other cats but can be vocal. When we left, there was this squeak from upstairs and Amy the fosterer told us that was Ivy! Interrupted nights ahead as we plan to use the small front bedroom as a kitten home till she gets used to us and Del gets used to her presence.

This shows persistence can work - plus some home truths, encouraged by the words my therapist used when talking about Dennis’s refusal to let me have a cat. Yes, I wanted to rehome an older abandoned cat but, having yielded, D insisted he wanted a kitten. And you should have seen him in the room, surrounded by 6 kittens (3 stayed lodged beside the wardrobe, bless them). The expression on his face said it all - entranced. My initial choice would have been Natasha, a bundle of white fur with grey tabby markings on her head and tail. Sadly, each time I looked at her I felt real sadness because she looked too like Del’s sister Bonnie. So Ivy it was and I hope she’s the right choice for us. Here she is: 

I have mixed feelings about this. Is it selfish to rehome an abandoned kitten when I know I shan’t be here to enjoy her for long? I mean for years. Is it selfish to hope for a cat that prefers indoors and likes to cuddle up on the bed with ME, not D?  Well, it’s too late now - I’ve ordered the litter tray, carrier, cat tree, dinky food and water dishes - and the most hideous cat bed that just made me smile (rainbow coloured). In the spirit of optimism, because I know you can never get a cat to do what it doesn’t choose to do), I got more tasteful and bought a grey cat bed for the bedroom. Little Laurel is going to keep me company whether she likes it or not! Well, that’s the plan.

On the downside, first we have lost yet another member of our support group. Grace was one of the women I talked to a lot. She was only 43 and the last time I saw her she was talking enthusiastically about this new drug Enhertu, saying it was the best treatment she had had, feeling completely normal (her word) with no side effects. She had access through her work’s medical insurance - NICE still hasn’t sanctioned its use. It was a drug I was keen to try - but it only gave her a couple of months :( That’s FOUR members this year.

In terms of me, things are definitely moving now. K, my new breast care nurse, rang for a chat and told me my most recent tumour marker. Having been going up by 2 or three and staying in the 40s, it’s jumped to 67. That’s not a good pattern, though I must always remember tumour markers are not a solid indicator of what’s going on as they are affected by other factors such as inflammation. But the lumps on my neck are spreading, I can feel the change and last night I tried to get a photo. The bits I got were quite a shock to me. My eyelid seems more closed and, close up, I’m seeing double as it’s putting pressure on my eye. I’ve noticed I’ve started reading with that eye closed to get some clarity. Fortunately it hasn’t affected my distance vision so I feel I can still drive safely. I just can’t decide if it’s time to worry or not. I don’t want to change treatments - capecitabine has served me well, but it’s obviously losing the battle now.

On the way back from the hospital last Friday, I drove past my turn-off and immediately my stomach lurched. It seems I can drive in a 6-lane one-way system, face an oncologist and talk about cancer - but I can’t talk to a dental receptionist without reverting to type -lifelong anxiety. I was only going to see if I could change to Dennis’s dentist. Yes I could. Cancellation this afternoon. Erm… do I need time to think? No, DO IT. So I had a long session with this new dentist.

He was ultra-considerate and, when I asked, judged that the broken tooth would survive till I saw him again in July. Of course, a quarter broke off the next day. Sod’s Law. So Tuesday I was back in the chair and having what I wanted all along - that tooth and a small filling packed. Temporary fillings that will last years. But I didn’t get off easily. I had to have a whole head X-ray and he talked me through every bloody aspect of it. I was there for an HOUR! That man can talk for England. But he knows his stuff - and the first appointment I could get with my own dentist was late July!! So now I have a new dentist, have paid about £230 so far and have an estimate of £1300 for future treatment (including £600 well spent on sedation), 

284. Oh Jan, you idiot!

Birthday flowers

You may well be aware of what a moaning Minnie (what my brother David used to call me, thank you Dave!!) I’ve been over the past months. Exhaustion, breathlessness, extreme fatigue….not to mention the insomnia (7.05am yesterday, maybe because I didn’t have a chemo dose the night before?). Soooo many side effects.

Anyway, I got a call from the new oncologist/registrar Dr D. There was nothing to worry about - they always say that - but… Now, my bloods are fast-tracked so the pharmacist can dispense the chemo. It only took 20 days to contact me!! It transpires that my calcium levels are very low. Immediately this surge of guilt swept over me and I ‘knew’ what the cause is. I told him I’d not been taking my AdCal. I really don’t know why. It’s only a chewable tablet, not even repellent. But it was just one more tablet, taken at a different time and I kept forgetting till I had my nighttime medley and then I just thought it wouldn’t hurt to miss it. Eventually I just wasn’t taking them. My vit D was higher than the normal range and my calcium level was good. WAS. So we’re waiting till my clinic appointment on Friday to see if a week of Adcal has done the trick. If not…yes, another treatment!!

When I checked the box, the dispensing date was Dec 2022!!! So I’ve had no calcium supplement for 6 months. As Robert de Niro says, “My bad.” I do feel I’ve been pretty stupid. I googled the symptoms of  calcium deficiency and guess what - everything I’ve been moaning about. So fingers crossed the AdCal resolves it.

My MRI went fine, thanks to a lorazepam lol. My goddaughter took me and waited in the hospital cafeteria. It took 25 minutes to cannulate me. Strictly speaking, each person is only allowed two attempts. The nurse had about 5 goes and the radiographer at least 4! I had a lump like a plum on the back of my hand where the vein ‘blew’ when he tried to test the saline solution and it hit a dead end. I have a 3 inch bruise along the side of my wrist and the usual bruising on my inner arm. Needless to say, that’s where he returned to locate his vein!! It seems my veins are “tired” (huh, tell me about it) and thickened. Odd when my hand and arm look like a rich seam of gold for any phlebotomist. Fool’s Gold, it would seem.

Then I went up to the perfect cafeteria, just like the old days and back to basics. I had a dream bacon and mushroom bap and a crispy hash brown, with 9 chemo pills! Healthy eating isn’t a priority for me lol. As I left, they were putting out the lunch options. I could have stayed all day! It might explain why so many staff are obese though. Never the consultants and mostly women (who obviously predominate in the breast clinics). Anyway, possibly results on Friday but I’d be surprised.

Birthday ‘surprise’

So, my birthday. Why has it taken me so long to work out how to have a good birthday with someone who really doesn’t give a toss?? I booked a table at the Granary, a restaurant I know he feels comfortable in. Dennis had wanted me to book an afternoon tea from Fox & Finch but she couldn’t do the 8th so I arranged that for Friday. I ordered the perfect bouquet online and wrote the soppiest message to me from Dennis (to make him squirm. We chose my birthday earrings together and he tried to order me some little surprises, not easy when 1. He uses my email account and 2. He uses my credit card. I have to laugh. So we had a good two days.

More birthday flowers

I had some lovely presents, starting with Lavenham fudge from Sheila. I’m having to pace myself on that or I’d be on a permanent sugar high. It is gorgeous. Thank you Sheila. Trina of course outdid herself, with so many little extras that I lose track. But I assure you, I smell heavenly. I am overloaded with chocolate (yes, I can keep it for weeks uneaten!!) and there were so many flowers I ran out of vases. . The peonies were spectacular, the roses and lilies glorious. I got a planter of geraniums from Carol and I bought a planter for the front of the house. I also bought loads of books from my brother-in-law, almost all of which I’ve now read - M W Craven (bloody, rogue detective series) and Sarah Winman (exquisite writing). And I got so many cards. Thank you everyone who remembered, even when I don’t remember yours!!

So now I know, there’s no point in feeling resentful every year when D does nothing for my birthday - do it yourself, Jan!! It’s only taken 53 years to work that out. He won’t know what’s hit him when It’s my 75th!

283. Whoops-a-daisy

The infantile title is deliberate (see lower down - or should I say ‘down there’?) I don’t know if this is normal but, each time I take a tumble, I have a surreal slow motion experience. Yesterday (my 4th tumble in 2 years - not bad going) I just caught my heel in a tuft of grass as I went to move the sun-lounger into more shade. Then I had, yet again, a slow series of decisions, each of which I followed. How’s that possible? You fall in 1 or 2 seconds. For me it was:

Mustn’t bang my head (A&E cos of blood thinners)

Try to land on my bum like last time

Mind the metal frame of the chair

Shit, is anyone watching??

And I turned myself so I fell on my bum, supported by both arms. One wrist was very painful for a couple of hours and I waited for the swelling or bruising. Nothing. And the wrist was fine by teatime. Meantime, I discovered I’d injured my other thumb. It’s still very painful but, again, no swelling or bruising or I’d be daft not to get it checked out.  No crochet for now though - and I’m on a deadline! The best bit is I jarred my neck. I thought Please don’t let this affect my brain (the risk apparently is a bleed on the brain if you bang your head and you’re on anticoagulants). It hasn’t. But I’ve got an almighty stiff neck. Who knew the skull was so heavy!! Or maybe it’s just mine.

I’ve actually had a week off chemo and what a difference it made. Not immediately but, after a few days, I realised I was going upstairs at normal speed and not collapsing on the bed after that. I don’t know what it proves. I realise now it was a futile experiment apart from the psychological boost it gave me and the fact that I felt more myself for a good 10 days. I’d hoped it would show that capecitabine and the anticoagulant don’t go together well as they both cause fatigue but I’ve no idea if it’s the chemo or the blood-thinner - and I can’t do without either anyway. You can tell I never learnt about controlled testing! I’ve only got 4 more compulsory weeks on the blood-thinner, then it’s a CT scan and an appointment with yet another clinic whose name escapes me - but they will decide if I need to stay on it another 3 months. With my luck… Maybe the DIY daily injection doesn’t clash with Cape?

I have clinic next week. I have so many questions but I suspect they are unanswerable. Meantime, someone in FB asked for pictures of people’s skin mets because her oncologist thinks she still has shingles. Well, only the one on my face looks like shingles but I managed to take a picture of the back of my neck - and was surprised. All the new little lumps I have are colourless but my neck looks like I have a mild case of acne. Just when I’ve had my hair cut! There are a lot more that can be felt but not seen, from the mother lode (bottom left, cured by capecitabine) running up in chains to my hairline and, where the blue arrow is, 3 rather large ones that cape never quite beat They’ve grown in the 2 years from little bumps to the size of cherries and peas! That’s a pea you can see :) It might explain why my tumour markers are up, in which case, I don’t think it’s serious (naive?). I have my 3-D head MRI on Saturday to see if there’s greater activity in my tumour. Actually, I wonder if they’d let me rest my hand by my head - they could tell me if my thumb is ok!!

I have been discharged from Urology. Apparently my “files seem to have got lost in the system”. That explained the extra 3 months it took for any follow up. That excuse doesn't hold water now everything, literally everything, is online but I let it pass. I was going to put the poor urologist through the mill. He was probably traumatised! How can you discharge someone who needs a physical examination via a phone consultation? 

He started by asking how my vagina was. I told him Gynaecology had passed me over to Urology as being gynaecologically sound. So then he rephrased it: how were things down there? It had clicked by then. Oh, said I, you mean my vulva. Why didn’t you say so? He said that most people referred to it as the vagina so I ticked him off. I told him that while medical staff continued to use the word vagina, or worse, wee and poo, women were never going to be able to take ownership of their bodies. Maybe so was the reply. Maybe?? Honestly, grown women seem unable to use words like bladder and bowels, let alone urethra, vulva, diarrhoea (maybe they stall at the spelling, fair enough) and constipation. I read things like “Sorry to lower the tone but I’d really like to ask about… (down there/a poo issue/red wee).” God, we live in a world of infant adults!!

Back to the urologist. I’d had to contort myself to look “down there” the day before and was able to describe what I saw. It all sounded healthy. I asked about the impact of ageing and he went into some detail. Then I asked if it was a one-off. No it is likely to happen again and I must get my GP to do an urgent referral to urology. This time they would do a minor procedure to make things more comfortable. I’ve never complained of pain but hey. Who doesn’t want yet another bloody procedure on top of scans, clumsy blood tests, chemo, side effects, hay fever like never before… what next?? One good thing is I’m not getting incontinence. My urethral muscles near the bladder are strong. I’m guessing that’s from the cystoscope report. Gosh that was almost 6 months ago!!

And how could I forget my birthday? Well, this is far too long already so I’ll save that one.

Down there. Honestly… Having said that, Trina has drawn my attention to an NHS document from 6th June (I would have hoped it was 1st April). More about that another time too. But be ready, ladies, women and girls, to defend your body and your body parts (in terms of language). Back to ‘down there??’

282. To quote Philomena Cunk….

Britain is "standing at the fork in its crossroads"…

Think about it. If you haven’t seen the inimitable Philomena pontificating on “The United Britain of Great Kingdom’s” history, or human evolution, you’ve missed a treat. Try it on BBC iPlayer. She’s as daft as a brush, thanks to Charlie Brooker’s brilliant scripts - and some very smart or very stupid academics who she runs rings round.

The point is, that one phrase, standing at the fork in a crossroads, has resonated with me. That’s where I am. OK, lots of forks at the crossroads and no idea in which direction they’ll take me. And this bit’s not funny.

On the good side, I have another week off. I’d have come away skipping if I’d had the energy. But that’s the whole point - I don’t. So I have a week to see if the combination of capecitabine and rivaroxaban (the anticoagulant) is causing such fatigue that at times I’m gasping for breath, despite my lungs being healthy. I just feel so useless and, to some extent, ashamed of how “weak” I am, even though I know that’s unreasonable and not very fair on myself.

Alan and Kay came round last week - Alan power-washed the front paving, which Den never has time for, and Kay set about removing the grass and weeds from our wild front bed. Dennis weeded around the front and me - I sat and read in the back garden. The crazy thing is that Kay is 8 years older than me and Alan a year older than D so they are both in their late 70s - with the energy of people a fraction their age. It’s not right and it’s not fair. I know life’s not meant to be fair but Dennis shouldn’t be so tied up with washing and ironing and vacuuming and cleaning windows, let alone ‘cooking’ - but he is. And I do sweet FA. I did manage to make sandwiches but I couldn’t lift the kettle to make drinks! Pathetic.

So fingers crossed please that things let up this week and maybe the consultant can find the right way forward. I actually saw one of the boy registrars, a lovely young man called Dr D, but he had to consult Dr O, as he’s so new to all this, so I might as well have seen her from the start. The problem is my cough, which I forgot to mention to them, and that breathing. It’s how I imagine an asthmatic might feel before an attack comes on! I suspect it’s fatigue but I’m having every blood test possible. It took the phlebotomist SIX attempts (they are only really allowed two in one spot but she sneaked a few extras and eventually got blood out of my hand. I was covered in wads of cotton wool and criss-crossed micropore so I looked like the walking wounded. Of course I was wearing short sleeves but I daren’t remove them as I was still bleeding, thanks to the blood-thinner!

Thanks to Boston Globe!

It didn’t help that I’d managed at long last to get my Spring Booster, forgetting I’m meant to have it on the week off. It has been such a palaver, with the GP practice saying their clinics were targeting the over 75s and I’d be contacted when it was my turn. Wtf? Yet again, overlooking the fact that I am CEV and am prioritised. Anyway, Kay’s daughter pulled some strings and got us appointments at the next clinic - and we got done and then I was soooo ill.. It took 3 days to get my temperature out of the amber zone (it only hit red twice and I know I should have contacted the oncology unit but someone  in the support group felt the same and the advice was paracetamol. Hmmm). Now of course, I have no idea what immunity I have as the chemo had a good go at those invading antibodies and probably killed most of them off. 

Now I’m off to watch the Chelsea Flower Show. It’s a bit like me in Physics lessons - I could admire what I saw but could put nothing into practice!! Just look at this beauty. The garden itself won gold. It was absolute perfection. My dream garden.

281. Change is a-coming….

I think I’ve got to the stage where I’m beginning to fool myself in the wild hope that things are FINE and it’s all hunky-dory. I wish.

In order:

The blood thinners arrived on the Tuesday. It turned out the pharmacy had tried to ring several times Friday morning and couldn’t get through. A certain person has a fixed routine: 9.15 ring X and talk for an hour; 10.20, ring Y and talk for an hour. So he’d been fretting all weekend about the new medication not being delivered and it was HIS FAULT!!

They are dinky little things, definitely swallowable. Unfortunately, two of the main side effects are inflammation of the stomach (where have I heard that one before??) and, guess what - fatigue.  I can only describe the first week as shit - I could barely get up, let alone do anything. Carol took me out (I felt like an elderly relative being taken out for a treat) on the Friday and I did manage to get around a bit. I did 1600 steps according to my Fitbit, at least a thousand more than usual. But fatigue on top of fatigue is no fun, believe me. It has improved to the point where I feel normal - ie the level of fatigue I had before. I just don't get how they have no solution to this. I know I don’t need a B12 boost but I DO need blood cells. Sadly my results are always marginal so… no help there.

Wednesday I went for the Ophthalmology appointment I’ve been nagging for - and what a waste of time that was. The consultant didn’t seem to know why I was there. He’d obviously looked at my notes but it hadn’t registered that the tumour I have is actually breast cancer, let alone triple negative. He examined my eyelid and just couldn’t answer my main questions: what is this cluster of lumps? what is this large lump on the socket bone? why has my right eyelid started to redden like the left? He said he had no idea. They would have to do biopsies before they could say. He also said there was no lump along the socket bone (it bloody sticks out!!) but I think he was thinking of a lump on the bone rather than a lump in the skin, which he kept moving about, to the point where I feared my eye might pop out of its socket, and ignoring.

Maybe all that tai chi will be handy

Conclusion: I’m to have corrective surgery to raise my eyelid to match the other ie to be open. They will use the same line as before and release some muscle that got trapped during the last surgery (why couldn’t they have done this a few months later when the damage was obvious?). He suggested a biopsy of the cluster of lumps so I said I’d talk to my oncologist before deciding. He then talked about the blood thinners, how I couldn’t come off them so they would have to do ? and ? and I’m sitting there thinking under local anaesthetic? Me, who cant have a simple filling without sedation?? Anyway I signed the forms. I’ll deal with sedation when I have to.

Which brings us to today, the speediest experience I’ve ever had despite being surrounded by observers and students. A student nurse did my basic checks but a supervising staff nurse came along and asked him to interpret the results. That was mildly amusing (“given the patient’s age…”) as he was so young but he did a good job. Conclusions: temperature a bit low (“you don’t have to worry about that”), blood pressure healthy “given the patient’s age and condition”. Heart rate a little high but the patient is still recovering from all those stairs! “Spot on” replied the Staff Nurse, who looked a bit intimidating to me. He looked more like a bouncer!

Then I was immediately scooped up by Dr O again. She had two observers. They looked as though they might be starting their A levels but they were actually registrars. It meant I had to display my eyelid and my neck to three lots of probing eyes.  They’d obviously had a good chat about me beforehand and I got a very strong sense of what was coming - she thinks it may be time to change treatments. Well, I was having none of that lol. I told her that Dr U had said I had phases where it looked like the capecitabine was no longer effective but then my body rallied round and the cape started working again. That’s happened three times. Dr O wasn’t going to trawl through all my notes so she took my word for it and said that she would recommend I have a further cycle of capecitabine and we should wait for the MRI results of my head as my tumour markers show definite activity (I’ve known that for months - I can feel the new skin mets) and she would request 2 biopsies from Ophthalmology, one being of the lump he maintains doesn’t exist! Good luck with that one!

So now I’m no longer planning my hair appointment - I might be on IV Trodelvy and lose all my hair. I suspect I’ve just put off the inevitable but a bit of optimism and hope doesn’t hurt. Cape is still having some effect, I’m not suffering, so maybe a delay won’t be problematic. But I really don't want to move onto another treatment. I want to be able to continue to boast that I’ve been on the same first line treatment for two years. I want…I want…unfortunately what cancer wants is what counts  Am I being a fool? Should I just bite the bullet? I’ll ring Tuesday and see what my markers are. If the tumour marker is higher than 45, time to worry?

Writing this actually helps to clarify things - a bit :)