254. Almost all good

Yesterday, Den and I went to the oncology clinic and came away satisfied. I’m not sure if I have it in me to be happy and assume this is it, all good, for good.

My blood markers are down to 17 from 19, ridiculously low since people without cancer can have up to around 35 just from secretions from other types of cells. But my tumour marker remains at 6 which indicates it’s still active. I assume the capecitabine deals with the potential damage. Assume? Why don’t I think to ask these questions! Dr U believes my tumour and skin mets feel softer still (not to me) and he’s pleased with my progress. I asked when my next CT scan was and he said Radiology had emailed them all that morning to say there is a 13-week wait for scans. He also said he didn’t think I needed one (now that I DO find encouraging) but still put me in for one - I guess that will take me to the 5-6 months mark, if appointments are being delayed that much. I still have no faith in CT scans when they can’t pick up the known signs I have of SBC but I guess I want to keep an eye on the lung nodule and hope nothing new appears.

We talked about all my side effects and he apologised and said they are all related to the drug. He could reduce the dose a little more or give me a couple of weeks off to get my breath back (literally) but he would prefer not to as we (?) are doing well right now and a change could make a big difference and even mean cape stops working. But he said my immunity was as good as it would ever be and to get back out there (real world with people in it) as often as I can. So, let’s hope I’m fit for book group on Wednesday, though one of the members has offered to pick me up if I want that.

Make Seconds Count has a custom that
we upload our waiting room shoes.
This is a different take. Ancient Doc Ms

As threatened, I took Den along with me so he could hear for himself that things are going fine. Dr U said that sometimes it was worse for partners - I am taking my pills and doing what I can to keep the illness at bay, knowing I’ve made the right decision; he may well feel helpless and out of control, knowing he has no idea what lies ahead and he can’t help. He bloody well does help - he’s removed almost all daily chores from me, partly because often I can’t wield the ‘tools’. You should have seen me buttering some toast yesterday!! Den admitted he’d stopped doing all the things that gave him pleasure before. He could gain no pleasure from them. PROGRESS, he’s playing the new Robert Plant/Alison Krauss album very loudly so I can hear it too. It’s wonderful - their voices are so different but they go together and their choice of instruments is gorgeous. Love it. Unfortunately I have no means of playing it now my laptop is defunct. Who’d have thought CDs would become defunct!

I’m definitely losing the plot though. I’ve resorted to a Christmas card for D from the cat! I can almost see Del rolling his eyes (but he doesn’t know I’ve got him a new cushion with his name on. What the hell is happening to me???). I don’t know if I mentioned it before but my present from D will be a monthly delivery of flowers for a year. The problem was, he couldn’t work out what to do so I ended up ordering my own present yet again. Oh, he’s well trained but I’ve failed miserably over 50 years on the present-giving front. Enough D-battering. He’s a treasure. 

253. Same ol’ same ol’

It’s strange living with something you can’t ignore. I mean the disease, not Dennis. While I wait 3 more days for the best flu protection, it’s still like life during lockdown. I’ve got only two more doses to go and I’m done with the tablets for cycle 10. Then I need to wait for the side effects to ease off.

I have booked a reflexology session for Wednesday, my first since January 2020, though it doesn’t seem that long ago. Poor Caroline will be in for a disappointment. My “baby-soft feet” as she used to describe them have changed a bit. For a start, she might need sunglasses, my heels are so pink. Then the bulk under my heel seems to have reduced and I’m left with wrinkled and hardened skin, not comfortable to walk on. Still, I’m sure she’s worked with worse and I’m fortunate the PPE hasn’t got much worse. Women in the Facebook Groups who are on capecitabine have lost nails, have weeping sores and can’t walk. Sorry, but this is the reality of the treatment. So yes, I’m fortunate.

Any idea?

I’ve been walking round the house most days, rather tedious but I’m discovering all kinds of toadstools. Maybe it’s time to look them up. I probably knew all about them from Girl Guides (such a lot of handy information, most superfluous now in the days of technology. How often do you wrap a paper parcel? Or need hospital corners on your neat bed? I can still distinguish between a Horse Chestnut and an Oak from a distance but I can’t find a practical application for such knowledge now lol. Stilll, it earned me a few badges at the time. I wonder what happened to my postcard collection (for Collectors Badge). I had over a hundred in there, some dating back pre-WWI. Ah well, gone the same way as my Edwardian silk and lace blouse which belonged to Great Great-Granny. I never knew how to look after treasures. Back to the toadstools: probably most are edible but I’m not one to take risks. I’ll let them disintegrate with time. 

I’m close to renewing my gym membership but I think I need to dip a toe in the water first (a pink toe). I hope to meet up with some friends at Cookridge Hall, just for a coffee and chat, as a start. I’m only used to being surrounded by people with cancer, which is rather a sad comment. Not that you can tell. Most look quite healthy but you can kind of see those who are nervous about having a scan, waiting for results (scanxiety), the newly diagnosed. You get a feel for it and there’s nothing else to do in waiting areas except people-watch.

Thinking of scanxiety, I suspect joining the Facebook groups has been an advantage and a disadvantage. It takes up so much time. But I learn a lot, like there’s a secondary breast cancer group that meets regularly at the Maggie’s Centre so, if I can drive, I’ll go to the next session. However, I’ve noticed that my thoughts are sneaking to places I’d rather they didn’t visit. I’ve read so many posts written by women devastated that their treatment is no longer working and I wonder… Then I reassure myself that, if my blood results weren’t good any more, they would ring me and get me almost straight onto second line defence, the vile paclitaxel. But I know next Friday I’ll have just a tiny seed of anxiety till I’m told everything is still fine. I should say we since I’m taking Dennis so he can hear for himself that I’m not underplaying things and everything is (kind of) ok. He still looks at the dark side of it all but what’s the point? How does anyone benefit from it? 

I’m not all sunshine, don’t think that for a minute. I’m driven daily by the state of my bowels and the level of weakness I feel from fatigue. Even now, when I’d say the side effects of cape are very manageable, I still have days in bed, just watching tv, not even reading. However, along with four times round the house (1000 steps) I’ve also read a chunk of Jack Reacher (how do they think of these plots???) and I’m going to pick up my knitting again.

Ok folks, that’s my update. More news after clinic on Friday. Fingers crossed please that it’s happy news.

This brave and hardy beauty has survived into late November!

252. I’m all in one piece again

 I’m sorry I haven’t posted anything recently. My mind is in a strange place right now and everything feels such a chore, too demanding mentally, so I let it go and keep my mind almost numb. I guess it’s a delayed reaction?

So first the cancer. It’s all going to plan, my markers are very low and, more important, stable. My tumour has shrunk a little but unfortunately is still cancerous so is able to send out those nasty cells to settle elsewhere, but there is no evidence it’s doing this. Let’s keep things as they are now.

I truly resent taking the oral chemo and dread next Monday evening when I start cycle 10. It’s not that it makes me feel ill any longer - fatigue, an empty head and pink hands are the worst I have now - it’s the knowledge that I have to keep doing this twice a day for two out of every three weeks indefinitely. Not even a reduction in the number of tablets. Dennis is in charge of the tablets and my heart sinks when he brings the tray with food (essential), drink and tablets. I mean, how would you feel about swallowing 9 pills that apparently are so toxic you have to flush the lavatory twice (so much for helping the planet) and wash your hands after handling them? It feels surreal. I try to numb out, like I have with a lot of information about the future, but it does get me down.

However, almost everything the CT scans have thrown up (something new every time) has remained unchanged, meaning it’s benign. This includes my fractured sternum which they were concerned about, the gynae stuff (apparently I have 4 cysts on my right ovary) and the lung nodule. Had they shown any reduction, that would have indicated a response to the Cape and indicate they were malignant. So it’s just this cute kidney bean across my nose/eyelid and the skin mets on my neck and face, all softening so definitely responding. Sadly my eyelid apparently will not improve, apart from the lumps softening further and maybe in a year or so disappearing. It will remain numb and not move when my other eyelid does - best noticed if I do a Princess Diana and peek up through my rather sparse eyelashes. Otherwise, you wouldn’t notice unless looking for it so maybe I can stop hiding behind my glasses and start experimenting with me eye makeup, now at leat 2 years old!

 I’m living a life of lethargy, tho I do pick up when we get visitors or Carol takes me out for a coffee in Chapel Allerton. A real, bustling world (although she gets very anxious about if there’s a risk to me, bless her). I’ve also been to the hairdresser’s and had my hair chopped of. I’m toying with the idea of lavender and steel grey high/lowlights. I love the idea but the thought of sitting there for hours… maybe not. But I have to have something on my bucket list!!

We got our flu jabs last Thursday. I’m rather cross with my GP practice. I rang and explained I had to have my flu jab within about 3 days in a specific week and was told they had no supplies so could make no appointments. Ring back next week. I did. All appointments now gone. This was after someone had noted I needed a vaccination in a short space of time. I feel a complaint to the practice manager coming on! 

Booking a pharmacist online proved useless but one of my book group friends mentioned she’d just walked into her local chemist and got her jab. I gave them a ring and the pharmacist was happy to book us both in on the perfect day - time for it to get to work on those antibodies before Cape starts destroying all the cells.  I do remember how blood works from O level Biology. I know my lymphocytes from my phagocytes but no one even mentioned cancer creating defiant cells that can resist of treatment so that’s where my understanding stops. I’m guessing I’ll have some immunity.

I’ve never had a reaction to a flu jab. Maybe it’s the fact that we’ve been isolated for so long. I developed a splitting headache and was exhausted when I shouldn’t have been. It only lasted 24 hours though.  Dennis got pins and needles in his hand and his arm felt very heavy - and still does, 4 days later. Maybe that’s because he’s part-way through coating The Shed? I’ve given up with Mercia, the manufacturer. Alan has been a gem. He added the turn buttons Mercia sent, glued and clamped the split wood and has said it’s best left now till late Spring when he’ll plane the warped doors that barely shut now.

I’m having second thoughts about the FaceBook groups. They’ve been a fount of information and experience but so many people are experiencing such awful things, part of me just doesn't want to know. Is that selfish of me? I’m happy offering support for people just being diagnosed with bc and people going though treatment but I can’t identify with anyone further ahead of me in the secondary bc stakes. I know it will happen one day but for now things are relatively ok, apart from the pill regime. 

No more writing stories. I’ve battled with Microsoft which caused the loss of all my Word documents on my ipad. I’ve battled with Apple, to whom I pay 79p monthly for cloud storage on the understanding that everything is backed up regularly and automatically. I was so sure everything would be safe in the cloud but no, Apple only stores your last and previous back up. Everything gone. But wait, I have some on my old laptop. Dead as a doornail. Ok, buy a new battery - it doesn’t fit even though it’s a repeat order (boring story). Buy another battery and, like Cinderella’s slipper, it fits perfectly and it starts charging. But the laptop refuses to cooperate and switches itself off. Persistently. I’ll have to take it to a computer specialist, pay more than the laptop is worth to get it fixed and gain access to my older writing at least. I haven’t written for months. Is it worth it?? Lesson - never rely on those Clouds and OneDrives. They don’t store your stuff, they save over it! The tears threatened but they didn’t come.

So that’s one cheerful update. Why don’t I just say “All going to plan”? because I’ve no idea what the plan is. Who does? Just never try to comfort me by saying we could all get run over by a bus. There’s a big difference between being aware of a remote possibility and knowing that bus will be coming but having no date.

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’.