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 :)