251. Lost again - one left kidney

 Today was clinic day. There was only one doctor on duty so I had to see an oncologist new to me but she’d taken her time to read through everything carefully and knew what she was talking about.

CA15.3 Pretty, aren’t they?

We started with blood markers and tumour markers which she said were basically the same thing: proteins released into the bloodstream by some cancer cells. I’m lucky that mine are secretors! She showed me my results and there were two columns: one protein is the tumour markers, the other the blood markers which I knew all about. The blood markers moved into safe territory quite quickly. The tumour markers are a bit behind. The highest red number I saw was 24 and now I have a black 6, though the target is zero on this one.

Then we moved into the scans. She started by talking about necrosis which led to having my kidney removed. So the breast care nurse got it wrong - the report hadn’t been amended after my last consultation, What bothers me is that maybe it’s not a transcription error. Maybe two reports have been confused. Anyway, Dr L made a note to write to the Consultant Radiologist to have it checked out and have my report amended so I get my kidney back again. Interestingly, she wouldn’t take my word for it. She checked the CT scan to see two healthy kidneys before accepting it.

Then she showed me my MRI which shows the tumour is still there. It has reduced in size a little, not as much as I’d have liked. It’s actually located inside the bridge of my nose, though I have no problems with my nose or with breathing, is kidney shaped (hey, maybe that’s my lost kidney) but, most encouraging, it reaches outward to my eyelid (still lumpy and swollen though not red now). If it went the other way, it would be heading for my brain. Dear god, please no.

She followed up every side effect I’ve ever mentioned, informed me that I should be wearing socks as protection for my heels and that I should be on a low fibre diet, particularly as the last week or so has been Bowel Time. That shocked me. Everyone who promotes healthy eating says high fibre is necessary. I’m not great at it but now it’s no salads, choose fruit and vegetables carefully and avoid high fibre breads. So, having worked to improve my diet I now go back to what I love best - nursery food. Today - mashed potato, peas and broccoli with gravy. Bland and delicious! Tomorrow, rice pudding? 

Tomorrow I have Vaccination #3, the one everyone denied existed. I get what they mean now - it’s still going to be the same as what’s given in the booster but it’s part of our primary vaccinations and has to be Pfizer. As for a flu jab, maybe I’ll get one in January because there’s nothing doing with the local pharmacies (booked till the end of November)or my GP practice (no idea when they’ll get new supplies). It’s so hard when you only have a three-day window every 3 weeks! 

250. Never mind cancer outcomes? Wtf??

I never thought I would include a picture of him in my blog but what he said in his BBC interview the other day was outrageous and cruel. When challenged about the concept of “levelling up” for which Mr Gove is responsible  (honestly, I don’t think even Monty Python would have thought of a Secretary of State for Levelling up), our Prime Minister responded with 

‘I’ve given you the most important metric – never mind life expectancy, never mind cancer outcomes – look at wage growth. Wage growth is now being experienced faster by those on lower incomes. It hasn’t happened for 10 years or more.”

Shadow health secretary Jonathan Ashworth said the comments were “the most chilling words ever spoken by a Prime Minister.” I tend to agree. That’s many thousands of people dismissed with a toss of his fringe.

So there you are. You may have a decent wage but you may not be able to earn it because you’re riddled with what should be a preventable disease but your local hospital lacks the resources. How anyone could not realise that wage growth is a significant factor in life expectancy beggars belief but then again, nothing this Primme Minister says makes sense. It’s just uninformed waffle.

I have joined a few secondary breast cancer groups on Facebook in order to find out more about the lived experience of others. This is what I’ve learnt so far:

• Triple negative breast cancer (TNBC) is called so because it is not caused by hormones and scores zero on the Oestrogen, Progesterone and Human something Growth Receptor (HER, a protein) tests. It is a very aggressive cancer, which may explain the large number of infected lymph nodes I had in 2018 and definitely explains why I now have secondary breast cancer because it often thumbs its nose at chemotherapy. It can create lesions and tumours anywhere (OK, the eye socket is a bit weird) but most people seem to have it in their bones, liver or brain, or a combination of these. I feel fortunate but obviously, given the location which is hard to see, I’m not. We shall see. I am soooo glad I didn’t realise I had a TN tumour before now. I think I would have been permanently worried and never certain I was clear. At least ignorance gave me two years of OK-ness.

TNBC is therefore harder to treat and it seems to be guesswork and instinct that determine your treatment, whereas with a hormone receptive cancer, they obviously use treatments that work on that specific hormone.  The result is that there are fewer treatment options. There seem to be plenty of drugs but there is a protocol (referred to here as the Treatment Landscape!!) that lists the drugs to be used in the first line of defence, When that fails, you are moved to the second line of defence which offers alternatives. Mine is the dreaded Paclitaxel which I had x9 first time round.  Back to weekly IV and baldness. When that fails, they try the third line of defence. There is a battle going on about a new drug that is showing excellent results - it is now available to the NHS but does not have the NICE recognition yet so most hospitals maintain they can’t use it. Patients think otherwise, quite rightly, and are lobbying their MPs. They use it at St James’s but you have to have had two other failed treatments before you’re offered it. There must be sound science behind this protocol but it’s pretty scary to know it’s trial and error.

Some people last with their first drug, some get moved on within months. Touch wood, capecitabine continues to work well in controlling my cancer because I dread having 18 paclitaxel treatments. The logistics of organising lifts is terrifying in itself but maybe taxis will be safe for me by then, if I’m jabbed properly. 

Some people live for years (the most I’ve seen is 22 but she now has a new spread and is most indignant). Some people die quite quickly because they don’t respond to the drugs and the spread continues. Hence Sarah Harding’s rapid decline. I fully intend being in the former group. So there. 

Secondary bc is labelled incurable (pretty insensitive) because it is - once the cells have metastasised, they could be anywhere and you can feel perfectly fine and cancer-free when the buggers are settling into yet another part of your body. That doesn’t mean one is going to die, except for the fact that we all do eventually. What it seems to mean is that there is the prospect of leading a pretty shitty life of pain and sickness from the constant treatments. And the treatments and scans have to be constant because they never can tell what will happen next. That’s why they are now keeping an eye on my lung nodule and my sternum. They don’t trust the cancer to behave itself. I will be taking my 18 tablets a day for as long as capecitabine keeps my blood markers down and prevents new lesions. Oh joy!

I have also learnt that I seem to be out on a limb compared to most. Not only because of the location of my tumour (MRI results in 10 days) but because of my laissez-faire attitude. I don’t understand why I’m so phlegmatic, why I don’t get surges of anxiety (I admit to some scanxiety when it comes to results but I reckon that’s normal) and why I don’t think about dying. Maybe things will change when cape starts letting me down. I have to say when rather than if because that’s the reality - it will stop working,; we just can’t say when.

So this is a nice a cheerful post in my blog but I need to record it for my own benefit. More about vaccinations next time. What a breath-taking cliffhanger!

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.

245. Looking promising

 First of all, it’s day 13 of cycle 6 and I’ve been for a drive. More of a drive than I planned and I wasn’t overwhelmed by information overload from other cars as I feared. Changing things like the heater and air con are beyond me for now. Partly, I can’t remember where the buttons are but mainly because I really have to keep focused or I swerve. Friday I got a car valeting service in as the car was filthy - I think there’s a load of dust in the top of the garage. I have never seen such a shiny sparkly car. But they reversed into the garage so I could just drive out. That’s not what I do. I reverse into the laurel that is three times the size compared to when we moved here and then I smoothly (?) drive out of the second entrance. This time I had to drive across the drive and then turn out of the first exit and on the third attempt to avoid the stone walls each side, we were off - wondering how much damage the scraping sound had done. It’s a garage job but no dent, Dennis is using it as evidence that I’m not really fit to drive but I did it once before, exactly the same low wall - and I was normal then. Oh well, you see plenty of cars with scratched sides, don’t you?

Yesterday I had my quarterly CT scan. Joyce took me so we were half an hour early but I went straight in, got cannulated and we’d finished by the time of my actual appointment. I took a picture because she did it so perfectly despite the warning on the front of my file. I’m forever branded as Difficult To Cannulate!At our last consultation, Dr U said I was having my head scanned. I said the letter specified pelvis, abdomen and thorax so he said he’d put it right. Nope. Just the three areas. They looked up my details and said I’d had an MRI on my head in January and everything was clear so not to worry about it. I pointed out that 8 weeks later, the ophthalmic surgeon found secondary cancer in my eyelid so the scan had missed it and, since that’s where the cancer is located, I needed my head doing because it was something to worry about after all. They weren’t really listening so I’ll have to go back for another scan now!!

Usually they are very conscious of patient modesty. They give you a gown and a curtained area to remove any garment with metal in. This time, no such modesty. I lay on the scanner bed and then had to roll down my jeans till the zipper was past my knees, desperately trying to keep my knickers in place. Then one of the radiologists placed a sheet of paper over my knickers for modesty (while others were milling around). I thought such things didn’t bother me but obviously they do. I was as cross as one can be after taking one lorazepam -I stopped smiling maybe. Then I was warned I may feel like I want to pee but I wouldn’t. Great. The contrast dye shoots up your arm and then you lose track of it till whoooosh, it hits the throat, you taste metal and everything feels very warm for a few seconds, by which time you’re distracted because whoooosh, it hits the pelvis and there’s a ball of heat pressing on your bladder (no wonder people want to pee)/ Then it’s utter boredom as you hear a disembodied and almost incomprehensible voice issue instructions about when to breathe, hold or exhale.Unfortunately they don't tell you when it’s ok to breathe normally so you’re kind of stuck there wondering how much longer you can hold that breath!

Now comes the scanxiety, as I’ve learned it’s called in the world of secondary breast cancer (from now on referred to as SBC as it seems no one likes to write the actual words). I don’t get scanxiety. How can I when almost every scan I’ve had has failed me, starting with that false mammogram result. Look where it’s got me. Well, actually, don’t bother because no one seems to know where it is at the moment. A few possibilities but nothing worth looking into - let the capecitabine slaughter it. I thought it was slaughtering me but I’m delighted to say that apart from sporadic dry mouth/throat, almost perpetual constipation and fatigue, I feel so much better this month. Presumably my body has adjusted to it now. I do hope that’s a good thing because I know one day, capecitabine will stop working and I’ll need another treatment to control the cancer as it spreads wherever it spots a weak spot. Not having to take 18 tablets morning and evening will be the only good thing about it.

The PPS I was warned about is beginning to show up. I have bright pink patches on my palms, my heels are bright pink and I have a patch on my big toe that is lurid pink, feels like (but isn’t) an ingrowing toe nail and I stubbed it last night. Ouch.  Now I have to wait till Thursday when I’m to see Dr K, the oncologist who encouraged me to be treated in the Bexley Wing. I don’t know why I’m not at Friday’s clinic with Dr U so I’ve started imagining things, none of them good. Maybe it’s my alternative to scanxiety.

Apart from that, a scratched but shiny car and fatigue that makes me want to lie down and sleep yet again (I did it this morning - till 12.30!!), all is hunkydory. Fingers crossed. And yes, I know I owe some emails. Please don’t think I’m ungrateful - just bone idle (I now understand why they used that description).