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??’