249. Lost - one left kidney

 Talk about not knowing your arse from your elbow…Today, Dr U started by reading my CT scan report from 4 weeks ago.

It opened by saying I’d had my left kidney removed. Excuse me? Then he asked suspiciously if that was accurate, as though I’d been holding something significant back from him. Then he decided it was a transcribing error.  Well, amused though I was, when you think of the possible ramifications, it’s outrageous. Yes, we know it meant left breast but what if it goes into my records like that??

Blood markers today are down to 19 (completely normal). Tumour markers, which no one has mentioned before, are down to 6, a steady downward trend - so he is happy. Now I have to wait another 3 weeks for my MRI results. I spent 85 minutes in that bloody tube last evening, my ears ringing from the strange noises the machine makes. There’s no pattern to them. You’ve no idea what to expect next. Unfortunately, apparently I blinked so they had to start one scan again, hence the length of time I would never have managed without lorazepam. I found myself veering between applying my slow deep breathing to relax (not so easy with your head in a vice and a plastic face shield that made me think of Hannibal Lechter) and trying to create some music from the clanging and banging and bleeping. Heigh Ho.

Now comes the confusion of the jabs. I have a text from NHS England saying I should book an appointment online for my booster - if they had any appointments! I have to have it in the week of no treatment. So that’s 2 weeks ahead. But they only allow you to book up to 5 days ahead - and then there are no appointments.  There’s a press release dated 1 September from Public Health England saying that CEV patients should be offered a third vaccination and later be given the booster. It actually states that the two are separate. My oncologist knew nothing about it so, when he rang with my blood results (an unexpected courtesy - I think he’s just so relieved it’s working), I read it out to him and he still said he thinks it’s the same thing. One booster. Well, if they don’t know, who is going to know? This afternoon, I shall be brave and attempt to breach the defences of my medical practice and arrange my flu jab at least. In my dreams.

Apart from being wobbly, I’m feeling ok on Day 5 of my week off. That’s an improvement. Dr U did offer to reduce the dose but I was a brave little soldier and said I’d rather put up with the side effects as they are and make sure the cancer is kept under control. I forgot to ask about the enlarged lymph nodes, dammit, but they are no longer concerned about my endometrium, my left ovary (not mentioned to me before. - maybe they meant my kidney?) or my fractured sternum. However Dr U wants to keep an eye on that.The only worrying thing is that there is a tumour at the bottom of my left lung. Wtf??? They suggest this may be harmless, the result of a recent infection. Great, except I haven’t had a sniffle (runny nose yes, but sniffle no) in the past 18 months. Something else to keep an eye on.

Oh the best news of all. All future mammograms have been cancelled. Oh bliss. Thank you, wherever and whoever you are. It makes sense. I have a CT scan every 3 months so why would I need a mammogram? 

No more pancake breast. No more radiographer laughing as I pull my Dad’s agonised face at the slightest pain. I wonder how his face would have been if he’d had a testicle flattened between metal plates? Off the scale, that’s for sure. Bless him - low pain threshold.

Soooo…looking good. It’s so sad that a tiny voice in my head has to add “for now”.

248. I win again…

 Oh, I am on such a roll - another 25 quid thanks to NS&I (my premium bonds). Two months in a row.

Bowels.

Don’t worry, I’m not going into gory details but there’s so much time to reflect:

1. Capecitabine causes both constipation and diarrhoea. Till now, I didn’t think it was possible to have them simultaneously but actually it is.

2. No one enjoys being constipated. The hospital pharmacy would send me home with boxes of senna tablets- impossible to break up and impossible to swallow so I just suffered in silence. This time, I have discovered Dulcoease. I have yet to use it for fear I will get diarrhoea.

3, Diarrhoea causes nasty cramps which Buscopan can resolve. The pharmacy this time had issued Loperamide on the (wrong) assumption I will get diarrhoea. Take one loperamide (or Imodium, the posh equivalent), and you are instantly constipated.

So I sit between a rock and a hard place. Actually, no, I sit on the loo. Repeatedly, some days,

4. It’s possible to sit in the bathroom for 59 minutes without getting bored. No, I don’t take a book (unlike my father who kept The Observers Book of Weather to peruse in his prolonged sessions) or my phone. It’s thinking time. Mostly thinking about what else I can do to relieve the constipation or diarrhoea, for which I have yet to find the answers.

5. If, on a night like Friday’s, I have crampdiarrhpation, there seems to be a foolproof action that guarantees bowel activity: go to bed. As soon as you feel yourself dozing off, along comes a cramp and a sense of here we go again.

Yes, I have dozed off sitting on the loo.

6. The instruction booklet clearly states that, after a bowel movement, the toilet must be flushed at least twice. Do they think my husband is going to drink from it? Is it radioactive? If it’s so bloody toxic that it has to be forced into the sewage system asap, what’s it doing to my body?7.

7. The instruction book also says if you have more than 4 bowel movements in a day or have diarrhoea at night, you must contact them immediately. To be honest, I don’t want to be admitted after my last experience. I imagine it’s to do with hydration. Since I now have to manually open one or both eyelids when I wake each morning, I can safely say I’m dehydrated but I’ve never been a drinker.  To be honest 4+ bowel movements in a day is cause for self-congratulation  (I’m not going to ask D to celebrate with me) after 5 days of no activity at all (despite the rhubarb). Makes room for cake.

So there you have it. Further dilemmas thanks to capecitabine, my life saver. Small price to pay but definitely a ‘price’.

247. Sleep, sleep and more sleep

 Well, I’ve just downed 16 tablets of one kind or another. I wish it was an IV treatment but I’m guessing it would be too much for a body to tolerate. It’s dispiriting though. The good news is that I’ve learnt from a secondary breast cancer group that lots of women are still taking it after a year or more, some several years. I’ve also come across a woman who had her secondary diagnosis 18 years ago! So I guess it’s all down to your oncology team getting things right for you. My concern is the ‘incurable’ tag. Why do they open with that. It knocks you back before you’ve even got your head around the basics. Incurable shouldn’t be one of the basics. I’ve checked and they don’t open with it when they describe diabetes, MS and other lifelong conditions.

Generally I’m still playing ostrich and getting along well psychologically. Every now and then, a random thought will strike me (always a negative of course) but miraculously I manage to shelve it. Physically, I’m doing a lot better. Unfortunately the dreaded PPS is creeping up on me, despite regular moisturising.  At this stage, it’s just lurid pink patches but I can see the skin in certain places is beginning to break up. I slather on more special cream and watch my hands and soles slowly disintegrating. It’s weird - why your palms and soles? Why not other parts of the body? Apart from that riveting information, mostly I sleep.  I had 6 hours of daytime sleep on Wednesday. Of course, it means the healthier night-time sleep is reduced, which is frustrating. Otherwise, I’m lolling in The Shed, listening to music and reading. What a life of luxury.

I’ve got 4 MRIs of my head next Thursday, then clinic on Friday when I’ll get my CT scan results at last. It’s only 4 weeks since I had the scans! It’s a good job I’ve had positive news so far so I’m not anticipating anything worrying… but doubts creep in at weak moments. What if the ‘suspicious area’ around my endometrium has got worse, or the one in my sternum turns out to be lesions, not scar tissue? Common sense says 1. they’d have contacted me if anything was wrong and 2. the treatment I’m having is a kill-all; it doesn’t distinguish between the cells, just goes for the jugular. But it’s hard work sometimes to stay level-headed and practical.

I’m reading a memoir I was told was inspirational - a very young woman who, by the time she sought medical help, found she not only had breast cancer but she had secondaries is various parts of her body. She was told she had three months to live - 12 years ago. It’s quite an irritating read for a 70 year old. Her teenage relationships and angst just remind me of work and I’m way less tolerant than I was. I’m full of admiration for her - she founded the CopaFeel charity to raise awareness of breast examination in young people - but I just don’t subscribe to this cancer battle. It’s a disease, not warfare! It can, or can’t, be treated. If it can’t, it’s not failure to fight hard enough. There are enough pressures without that accusation. 

Now I’m going to find out what the Thursday Murder Club got up to the week after they solved their first murder, a much better read, I suspect.

246. I was wrong…and right

 Thursday I was proved wrong. Seeing Dr K was merely an extra clinic to cover staff on leave and Dr U was on leave. Did I feel foolish, because he was so apologetic at causing me any anxiety. We got off to a good start with his saying it was nice to see me again, to which I replied that I questioned the nice in the circumstances. He agreed.

My blood markers are 23 which indicates little if any cancer activity - YAY - but he didn’t yet have the scan results. And I was right. I now have to have an MRI on my head. He said it’s to compare my eye with January (the scan where they didn’t identify cancer, just an “undetermined growing mass.”) and also to check the back of my brain because of my poor proprioception, toppling etc. At last!! It’s only 2 and a half years since I first mentioned it. Covid got in the way and my referrals to Neurology and the Frailty Clinic got lost in the system.

I’m not exaggerating. I came out of The Shed the other day armed with book, phone and mug, Dennis stood there locking up (long story *) and I just walked around him and found myself facing the wood on D’s other side. I’d walked in a semi-circle. D asked what I was doing and I had to say I was doing nothing, I just couldn’t stop the movement. Then Thursday, heading down the nasty cement staircases in the Bexley car park with Maureen, I lost concentration and, although I was holding onto the bannister on the left, I suddenly found myself on the right side, facing the windows. If that had happened on the actual steps rather than the break in the stairs, I might have had a nasty fall. So I’m glad it’s being looked at. It’s easy to blame everything on chemo but there might be another explanation (like old age or incipient senility). Getting older is less fun than i hoped!

I also found myself almost bursting out laughing at the ridiculousness of the situation. I must have spent 5 minutes discussing bowels, anal fissures, haemorrhoids, anusol, suppositories (which I was told in 2019 never to use -he says it’s ok but tbh I doubt I’ve used more than 5 in my life!), constipation versus diarrhoea. All with the same gravity as talking about balance and fatigue, 3rd injections rather than booster, and shielding versus quality of life. Then I found out that there was “a problem with logistics” and I couldn’t have my bloods done because it was a day too early for the pharmacist’s calibrations. This was after being told they wouldn’t be reducing the dosage unless I couldn’t tolerate it!!! I would have to go back Friday. Thank heavens for Lisa who dropped everything and took me. 

 I had considered driving myself

Credit: Creative Commons

but there are some hairy bits of Leeds to navigate and I didn’t think I was up to it. I told her it would take 10 minutes max. In fact, they were calling number 34 when I picked up my ticket - 63!! It took 59 minutes whereas the day before, I’d have gone straight in! And I heard someone talking about their daughter Dynasty. Honest!

When I got home, I told D about the markers and the MRI (I spared him the constipation debate) and he said “When are we going to get some good news?” Markers at 23??? All he heard was I need an MRI, something else for him to worry about. I forget sometimes that we have reacted very differently to My Diagnosis and it’s hard for him at times. Anyway, there on the floor was the box of flowers I ordered for myself just because…

Aren’t they gorgeous, even surrounded by my chaos?

* I’m in contention with the manufacturers of The Shed because of its faults that are only going to get worse. It would seem that they have a carefully worded document which absolves them of any responsibility because this is the nature of timber products. I’m not giving up yet. I’ve spotted possible loopholes but I’m not hopeful. I will have to resign myself to a summerhouse that absorbs water at the back and isn’t securely locked unless we regularly relocate the locks. As if that’s going to happen! But I’m not letting Dennis treat it until this is resolved. Actually I shouldn’t have to deal with the manufacturer - my contract is with Robert Dyas who have ultimate responsibility. You don’t pay over £2k for rubbish workmanship (unless you’re perpetually unlucky like Dennis and I are lol).

But it’s cloudy and miserable, I am still in my pjs at 4pm and really don’t care if it’s lazy. Now, back to the Paralympics. There’s something more uplifting than the Olympics. Maybe it’s what they each have to overcome on top of all the training , competing etc. They still go back to having MS or limited vision and more yet they never seem to do anything but smile with delight, with a few justified exceptions. Poor old Alfie losing the bronze in a match with his best mate. Gordon couldn’t even raise a smile when he won - the situation seemed too painful. But that’s competition for you. I have never been competitive (ok, maybe when I was in the netball team) and I don’t quite get it.