256. Human Pin Cushion

Sad to say but my veins are beginning to protest loudly at what they consider gross mistreatment. My favourite phlebotomist failed three times to get blood. Of course, that may be my body saying ‘Nope. I need all I can get’ cos I am sadly short of the necessary blood cells and vampiric urges sweep through me occasionally. You’d think they’d offer a simple blood transfusion but I’m not down to the qualifying level yet. I have to say it’s a weird feeling looking down at a needle inserted right to the hilt and not a drop of blood appearing. Of course, as soon as she removed the needle, blood started pouring down my arm! Anyway, the phlebotomist was about to call for the Big Man, the head honcho who never fails (huh) , but decided to go back into the first site et voilà, blood. Enough to fill two vials and provide the required data a day earlier than advised. I’m past caring on that one. I did NOT want to go back the next day and the chances of getting bloods done locally is zilch.

All is well. My blood markers are at 19 and my tumour marker is at 6 still. When I said I wanted that figure to drop, Dr U said he didn’t and he showed me the critical figures that put you into their red zone and it was anything below and including 5. I can’t say I understand it but it’s good enough for me if it’s good enough for him. I am, as they say in one of the F/B groups, Stable Mabel. 

The 13-week waiting list for CT scans was nonsense. I’m booked for my scan on Bank Holiday Monday at 5.30. Merry Christmas everyone! Apart from identifying that lost kidney and (let’s hope not) finding more suspicious areas inside, the scan seems pretty pointless as it’s not designed to pick up the areas where my cancer has so far settled. An MRI shows the tumour and I had one in September so it will be several months before I’m offered another (unless those markers start rising).

On the down side, having had a pretty miserable two weeks bowel-wise (my English is deteriorating!), I asked about my side effects and he said this was pretty much it after 11 cycles. I’m stuck with what I’ve got. That means

• Unpredictable bowels and hours spent sitting on the loo, often in the early hours of the morning when I keep my eyes closed as much as possible, in the vain hope I won’t fully wake up.
• Insomnia. I feel sleepy at 10 or 11pm then I am wide awake till 2 or 3. My kindle and the continued struggle to read Queen Lucia to the end (3 weeks now?) is helping me fall asleep.
• Unpredictable fatigue, meaning days when I just can’t find the energy to get out of bed and…
• Being able to walk very short distances and getting rather breathless, which I can tell you is not much fun when you’re wearing a mask.
• Sore toes and numb fingers, not much use to anyone.
• Self-pity.

So, great news on the cancer front, less great news on the body front. We’ve been invited to our friends’ house Christmas Eve and I’ve been invited to lunch at Cookridge Hall on Wednesday but I don’t know if I want to take those risks. The guidance is pretty vague this time. I’d rather be instructed to shield till I get my booster in a few weeks as it’s due on 14 January (if they go by calendar months) or earlier if they mean 12 weeks. Who knows? I think with that booster, I’ll feel more confident but it’s all too uncertain for me. I don’t want to break free and then find myself on a ventilator (how will I take my chemo???). Maybe it’s best to stay semi-shielded? 

Anyway, I’m off to wrap the few presents I have bought and sort out delivery. I’m sadly lacking in Christmas spirit. Even my little tree has yet to be decorated but, this year, not a needle has fallen - YET.

My beautiful Christmas bouquet

255. Big Wide World

 This cycle so far has been remarkable. It’s day 7 and I still feel FINE. My mouth goes a bit funny as the day progresses but that was happening before I started this chemo, and of course everything is dictated by the bowel issue. Yesterday I slept and slept, so much so that I woke this morning believing it was Sunday. However, I’ve been mobile, I’ve socialised and generally been almost normal. I do suspect part of the problem is I don’t push myself at all. If I’m tired, I just don’t get dressed. That consigns me to yet another day of reading (if I’m lucky), puzzles from the newspaper, tv and internet. Hardly a healthy lifestyle.

Last week, despite being on the chemo, I drove myself to various situations I’ve not been in for so long. I’ve almost forgotten how to be me.

Monday: Cookridge Hall, met Carol for a coffee after her swim. I know I planned to renew my membership this month but, right now, I couldn’t walk down to the pool without feeling exhausted. I’d probably sink!

Wednesday, Book Group, discussing one of the worst books I’ve ever read - Queen Lucia by E.F?Benson. I hadn’t read more than a third. The group was divided between those who gave up, those who raved about it and have either read or plan to read the whole Mapp and Lucia series, and those whose reaction was lukewarm. It was good to be back among people. Obviously because cake was involved, few were wearing masks and we weren’t socially distanced but the window was open, two others in the group have cancer as well (????) and obviously felt it was safe so I relaxed, removed my mask for tea and cake and for expressing an (uninformed) opinion. 

Friday I attended a support group at Maggie’s, run by Breast Cancer Now and facilitated by a trained therapist. I think there were about 14 there and there was a little distance between seats but it certainly wasn’t socially distanced. Yet, despite everyone having cancer and some of us immunocompromised, only one person was wearing a mask and she was heading off for chemo after the group ended. I can’t tell you how good it felt to be among women who understood exactly what I might feel and someone on the same chemo. We’re obviously very different - she gets copies of all her reports and does research; that’s anathema to me. The heart-breaking thing, apart from the facilitator announcing that one of the group had died that week, was that most of the women were so young. Statistically, only about 7% of breast cancer patients under 50 go on to develop secondary bc, yet here I was with young mothers each side of me. I’ll allow for the fact that I’m ‘old’ in terms of the demographic but how they manage to look after a family defeats me. One of them is in and out of hospital with neutropoenia for days at a time…

I finally plucked up the courage to email the practice manager of my GP practice, outlining all the areas where I feel they could have done more and I might have had an earlier diagnosis. To soften the complaint (I’m such a wuss) I started by asking what their protocols were for women who were identified as high risk of a recurrence or of secondary bc and for people who have secondary cancer (of any kind, understood I hope) but I ended by saying they had made me feel invisible. I do feel neglected - only one other woman in the group had not been in regular contact with a GP since their diagnosis and had been contacted immediately by their GP to offer support. Huh! And all of them are in this situation now, so the practice can’t blame covid. I felt incredibly sad after I wrote it. I think that was Tuesday. I received an automatic response asking patients not to contact the practice as they are extremely busy. But today I got an initial response, with an apology for how I feel and an assurance that she will look into the complaint. I hate calling it a complaint. Funny because if it were something I’d bought, I’d be standing on firm ground but when it comes to what are, to me, authority figures, I’m on very wobbly ground.

I wrote a response on one of the secondary bc Facebook groups, because I don’t think encouraging newcomers to do research is necessarily right - it’s helpful for some, it’s a nightmare for others. I even gave my own example, when I was horrified to find my chances of survival were below ‘Poor’.  I’m not quite sure what went wrong, particularly as the woman who posted agreed to some extent but she’s being treated in Paris where, apparently, they are all enrolled with some college and encouraged to research under guidance. It’s that last bit that’s so important. Anyway, I’m mean, rude and patronising. There you go, that’s me told. All because I don’t agree with something and say so. I guess it’s how it’s said but I said it no differently from usual. Incidentally, it took me about 30 seconds to remember the word’ rude’ and a minute of memory-searching to locate ‘patronising’. Is that age or chemo? It’s actually an intriguing process, once you get past the frustration. I wonder if everyone uses the same methods/

One more week to go. I HATE having to eat and take tablets to order.

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’.

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). 

50 Years and we can celebrate

 Well, sort of. We’d decided not to celebrate our Golden Wedding until I can at least taste something properly but Dennis suggested afternoon tea, my friend Anne who coincidentally married at exactly the same time (but in Blackburn - we wouldn’t meet for another three years. She’s now widowed) suggested she come round and we can reminisce together. Unfortunately the weather is preventing the proposed set up round The Shed so we’ll have it in what is euphemistically known as the Sun Room. It’s the extension which does get awfully hot when the sun’s out and is quite dreary without it.

I’ve been searching for our wedding album everywhere but can’t find it; same with my falsie - I can find the first one I had but it doesn’t fit. I’ve grown a bit. But I’ve found a knitted knocker which will suffice. I haven’t worn a bra for months! Anyway, eventually I found a few pictures, including this one of all the first-wave guests (second-wave joined us for the reception of 150!! I come from two very big families).

It was a wonderful day, one of the few where I didn’t mind being the centre of attention. Den wasn’t quite so happy about it but he did as he was asked, cut the cake and made a toast to the bridesmaids (thank you for the pressie, Sheila). Here we are, posing for the photographer, something Den would never do again. I don’t have a single photograph of us together since 1971. I think all his energy was expended at the wedding!

Anyway, back to the important stuff. I went to the oncology clinic yesterday and my blood markers have gone down from 128 > 86 > 27. Dr U said it was “an unexpected but remarkable effect”. I wasn’t too happy with the ‘unexpected’ but the ‘remarkable’ is great news. Unfortunately, it does mean I stay on capecitabine indefinitely so I have to hope  1. It keeps working (at any time, it will stop and we’ll have to find other treatment) 2. I get more used to it so I get the physical strength and mental agility I need for driving ie. normal life. 27 is actually lower than the average adult as, it seems, we all carry these marker, excreted from various types of cell, not just cancer.

Well, afternoon tea has just arrived and I wanted to use our wedding present plates (which we still use every day) so it’s not glamorous. But there is plenty of it!

So, Happy Anniversary Den and sorry we can’t celebrate in style. One day… Here’s to many more years, I hope.

243. I’m a winner!

 Yes folks, after years of silence from the premium bonds/NS&I, I almost deleted a lurid email from NS&I telling me I was a winner. £25. After all this time, with £4K invested. Not a great return, though it would have been once. But then I wouldn’t have had so many. Now what can I buy for £25?

We’ve decided to celebrate our golden anniversary with a luxury afternoon tea delivered. We’re deferring the rest till I can enjoy it. I’ve no idea when that will be but what I will confide on you is that, this cycle, I’m on Day 11 and, apart from being clumsy because I can’t feel with my fingertips and sleeping a lot, I actually have none of my previous symptoms. I know I have next week to face when I feel the full force of 252 tablets so I hope I haven’t tempted providence! But it feels strange to feel strange but not be able to say how.

Secondary breast cancer is surreal. I know I have it but I’m fine apart from a slightly swollen eyelid. No scans have identified cancer, just suspicious masses (too many for my liking). My oncologist admits that he hasn’t come across this before but my blood markers were soaring, showing some very aggressive cancer (but not saying where). All this uncertainty makes it feel a little unreal, which makes it easier for me to defer the big questions. All I can do is accept what I’m told and do as I’m advised. Anyone who knows me knows that doesn’t come easily to me.

Maybe my next appointment will bring good news. And at last I have my July CT scan date - 28 August!! I have to say I’m longing for normality. Dentist, hairdresser, hugs, going somewhere instead of drooping around in my pjs.

242. Encouraging news

 Just a quickie.

Hospital appointment yesterday, with some reservations - Leeds has the highest Covid rate thanks to Bradford and Delta and of course This Man Is NOT For Turning and his foolhardy decisions; the hospital is in a hotspot and obviously open to anyone (though their precautions are exemplary); and I’m told to shield. I’ve been thinking about this dreadful confinement when I may see probably one person who isn’t Dennis in a whole week - I think my hospital visits are my only socialising outside of my own property! How sad is that?

  I need to give my head a good shake and get back in my car but I feel too wobbly and it’s not just me I’m maybe putting at risk. Hard decision, made easier by the fact that I let my insurance lapse so I can’t drive legally anyway!

Anyway, back to yesterday. My lesions are still softening and Dr U maintains that my eye looks better. I disagree as I’m the one who can feel the pressure from the lumps and, because it’s the eye, he never examines it (that’s left to ophthalmology). The drug is still working as my blood makers are still dropping. We went through all the side effects (I am going to curl up with mortification if he includes it all in his summary letter (I received June’s today and it’s very detailed). There will be comments about constipation and diarrhoea, changing body smells (this is such a weird one, I don’t have the vocabulary to explain beyond one detail - my urine smells very strong, like cats’ pee - something I can smell well after the fact but Dennis assures me it’s just me. That’s a relief).

He wants to keep me on this drug, at this dose, indefinitely (till it stops working). Will quality of life improve as I get used to it? It has to. I did admit that I was lapsing into invalidity/invalidness and he suggested I get back driving so I don’t think he’s quite captured the depths of fatigue I describe to him. 

Kevin and Carol came round today. They married three weeks before we did so have just celebrated their Golden Wedding. I am literally JEALOUS - she has the most gorgeous diamond ring. Anyone heard of chocolate diamonds? I want one but she’s beaten me to it! Meantime, Den and I have agreed to defer our Gold Wedding until I can enjoy at least some food!! One can hardly celebrate such an occasion with a bacon sandwich (my current craving) and microwaved mash, peas and gravy!

241. I’m all set for the summer now.

 Here it is at last:

There’s a shed at the side but it’s hard to get the new lounger in. It’s got pebbles round the edges and Alan is coming one day soon, cos they did site it about 2ft to the left  and 1ft further back than I’d requested. He’s going to lop off the side of the hedge, just to get a bit of manoeuvre-room when it’s ‘painted’ some time. 

Surprisingly, I must be the only person whose not yet been in. Dennis and Clive manoeuvred the futon in. I gather it’s very comfortable, with loads of cushions. Three of the front panels of The Shed fold over on each other to fully open and the end panel folds back so we can get a full breeze so long as the planter doesn’t mind moving. Next we have to get the painting Trina did for it up.

So I guess we could call this a grand opening and, if I have a visitor and it’s windy, we’ll be cosy inside with a couple of doors open. I don’t care what Bouncy Bloody Boris says, I’m taking no risks til I understand my immunity. Marilyn asked to come over, as did Kiera, so obviously Clive would be coming. Marilyn drives less and less. But despite having nothing in common, Dennis and Clive get on well. Clive is a DIYer, as is Alan. We were just tucking into birthday cake, when Alan and Kay arrived with a “We’re not staying” and two delicious apple crumbles. They went to see The Shed and stayed half an hour. Meanwhile both Kira and Clive were eying a box I’ve never seen. It didn’t take much begging before I agreed they could set my new sun bed up. Everyone left very happy and I really had no idea of what was going on.

Sadly a week off wasn’t long enough. I was still woolly headed, wobbly and fatigued added to incomprehensibly constipated. For a drug that causes severe diarrhoea, it’s not helping, I’ll have to resort to taking DulcoEase, the weaker ones don’t scare me so much. So all I’ve done is watch Wimbledon and reminisce about my birthday treat of taking a few friends there and how we used to stand at the centre court aisles waiting for the leavers to hand over their tickets - it was a simple act of generosity then, not some convoluted exchange as it seems to be now. Then we poor deprived schoolgirls got Centre Court tickets for nothing and watched till light stopped play. And argued over our crushes. Mine was Bill Bowery, an Australian with dark hair and legs up to his armpits; Sheila’s was Roger Taylor, much less complicated. I caught sight of him yesterday, He still plays at Wimbledon every morning at 75.

Roger Taylor,  And here’s Bill Bowrey. I always like long legs. Which is why I married Dennis whose legs are like Burt Reynolds, who claimed someone had stolen his long legs!

Nostalgia. Tomorrow I shall utilise The Shed. By utilise I mean flop on the futon and possibly read a book. I have to decide whether to paint it the same colour as the green fence around it to leave it the same colour and just varnish. I am most fortunate to have friends who love DOING, so long as they remember.

240. All is going well…except for me.

 Good news at the hospital. My visible symptoms  (the eye, the skin lesions) are all softening and improving but, best of all, my blood cancer markers are continuing their downward trend.

To be honest. I didn’t think I’d make it to the appointment (OK, it was for 9am and I’m not awake then!). I expected to sit down and burst into tears and reject cycle 4 as unachievable. I expected to plead with him to admit me as an in-patient and give me blood and saline to hydrate me. But he checked my eye and neck and said they were looking good, went through ALL my side effects - there’s no room for embarrassment in chemotherapy - and then pronounced that he was giving me a week off to get back to myself again. Then I will have cycle 4 on a lower dose and a CT scan which is routine every three months from now on apparently.

This is SO me

In addition, he has cancelled my zometa infusions (I was a bit disappointed as I could have done with a bit of saline drip for hydration). Dr U said they’d done their job (clear bone scan) and were no longer necessary. He said the treatment I’d had would last for years, at least till I was a hundred . Nice to hear that when, at the back of my mind, is the unavoidable thought of will I make 71? Obviously yes.

I left the room a new woman. Still a bit wobbly but I could feel my body responding to the idea of a week off - shoulders relaxing, head a little higher. Of course, it didn’t help that the plan was to hand in my prescription at the pharmacy and then text my chauffeur  Emma to come and pick me up. But…I’d left the phone at home. I couldn't believe it, I’d already got in the car and then had to go back for my glasses. But my phone is literally my lifeline right now. And of course I had no idea of Emma’s number. There was no point ringing D - he’s terrified of my phone!

Fortunately I’d explained to Emma that there are Oncology Patient parking slots on the basement level so I decided I could walk there and pray she had found a slot cos a) there are 7 stories b) all I knew was she has a dark blue car and c) it would be a physical impossibility to walk all those floors and stairs. I found her!! Thank you Emma.

By the time I got home and was debriefed (it feels like an interrogation) by Dennis, all I could do was head upstairs and collapse on the bed.

At the moment, this has several connotations - a simple collapse on the bed; a loss of balance collapse on the bed; a fall onto the bed when my head goes hollow. That’s how it feels. It was a simple collapse on the bed. Later I toppled onto the bed and later I fell backwards by the dressing table - something to grab to avoid disaster. A hollow head fall. Today I got out of bed, stood myself upright and immediately fell back. Wednesday I stood up from the loo, balanced myself and then fell against the wall and back onto the loo. More hollow head falls. I don’t know what’s happening, it’s likely to be an “unusual” side effect- we’ll see later this week when my body is clearer of capecitabine - but I’m a mass of bruises and getting very wary of walking anywhere where there is no support.

The summerhouse has arrived but we have no idea when the fencers will come to put it up. Of course it’s been raining so it’s not having a good start.

Ah, but it’s going to be great!

239. And now for the truth..

 

This is how I feel. Trina and I make up words when we can’t describe how we’re feeling, This is distinctly flimby. Flimby says so much - floppy, flimsy, not-quite-there, drained, exhausted. 

Then I have the severest constipation I’ve ever experienced. Ironic that Dr U warned me of the severe diarrhoea I might get and equipped me with the requisite remedies. There are even instructions about when to contact the hospital ( more than 3 bouts in a day or at night time) and poor me, clogged up beyond belief, doesn’t get a look in.

I wary of taking something to move things along for fear it might exacerbate the threatened diarrhoea so I’ve probably spent about 4 hours going back and forth to the loo, moaning, whimpering, chivvying my bruised bowel to behave itself. The realities of cancer…

Being dehydrated doesn’t help. I’m still not drinking enough - hard when you find it difficult to swallow liquids. What I really need is some TLC up in the Bexley Wing. A comfy chair and a saline drip. Maybe some blood. I’d come out a new woman. Right now, I don’t like this woman.. I’ve picked a fight with someone on Facebook (the writers’ group) about calling sick people brave. I think if someone told me I was looking good or called me brave, I’d clock them one.There is no choice. It is what it is. The reverse of brave is cowardly. No-one would dream of using that term but I can promise you, it’s how a lot of us feel on and off. I think I’m just lacking a few blood cells.

Another effect is loss of balance. I’ve had three falls this week (which I have not told Dennis about for fear of increasing his worry). Since I’ve been wall-walking (as Dr U described it) since my first chemo, I’m an old hand at this but I have to be very careful near the top of the stairs, remember to grip the bannister and the door frame opposite and that’s it, all risk removed. However my falls have been in the bedroom, twice flopping backwards and sliding down the same drawer handles, once tripping and toppling on the bed.

I expected 70 to feel a bit different but I didn’t think I would be feeling this old.  End of moan. I kind of hoped I might need another dash to the loo by now but it seems I’m out of luck. I’ll just have to lie and wish. Sadly I need to eat too. Not a great combination lol,

238. Look on the bright side?

 So now I’m 70. I have balloons as evidence.

I also have a tiara as further proof :

     And loads of goodies from the famed Betty’s of Harrogate:

The only thing I lacked was the energy to enjoy all this. I feel rather sad that a big milestone has been swamped by my treatment. 

This is my present from Dennis. It’s actually a necklace but I don’t want to wear it , resting against some skin lesion. It doubles up perfectly as a bracelet. It’s Victorian,  silver and rose gold and much prettier than this indicates.

So a huge thank you to so many of my friends who sent cards and gifts and, in Sheila’s case, a video that really made me smile. I have been surrounded by flowers, from sunflowers willing me to perk up a bit, through countless glorious roses, to mixtures which will last and last, including a bouquet from my brother which is still opening a week later! I hope I’ll get round to thanking people but this brain fug makes me forget that things need to be done. Meantime, I am well supplied with cake and chocolate. Bless you! Uh oh, it’s tablet time. Off we go to down 19 pills, 12 of them chemo! My heart sinks when I see them!

237. Numbers dropping - a good sign?

 I’ve looked blankly at this for days, in a fug of chemo-induced exhaustion. Capecitabine side effects are sneaking through but overall I’d say that the second round was no worse than the first, despite Dr U’s warning. Maybe round three will enable the poison to show its true colours.

I’m armed - anti-sickness, anti-diarrhoea, anti-hand/foot syndrome treatments. That one goes by the grand name of palmer-plantar erythrodysesthesia and can be very problematic as it hurts. These are not my hands. I’ve only got small patches so far and a herbal remedy to massage in daily. It helped with the peripheral neuropathy so fingers crossed it helps with this. This is my foot though, a little concerning.

              

The only side effect that defeats me is the exhaustion. My neighbour, the lovely Lisa, took me to the hospital yesterday. She dropped me right outside Chancellors Wing so I didn’t have far to walk to the dreaded eye clinic, dreaded because it’s always heaving with patients. I needn’t have worried. The nurse on entrance duty reeled off all the covid symptoms I needed to say no to, then I just said “No, but I am on chemotherapy.” That was that. The clinic I loathed did a volte-face and I found myself bustled into an empty treatment room where the nurse said she’d do the basic checks and then find me somewhere quiet to wait. She also, as she checked my details, wished me an early happy birthday. I’ve never received such treatment from them before, they are just too busy. But she found me an empty treatment room where I actually had a comfy armchair!! It didn’t matter that they didn’t get me through as quickly as the nurse planned - they couldn’t locate me when the doctor called for me so he started a phone consultation with another patient!

Then it transpired that the appointment was, as I suspected, an administrative error as I’d been discharged by phone in April. However, I’m back on the books so he can keep an eye on my eyelid. Scarily, he informed me that the “soft masses” in my eyelid might well be cancer as they only did a biopsy in March. Dammit, why couldn’t they have cleared out anything suspicious? So, it’s up to the chemo to do its job and then they can do corrective surgery as my eyelid will always droop! How much longer can I go without my eye makeup? It’s dehumanising!!

Then over to Bexley wing but with an hour to kill so I suggested we just sat in Maggie’s. We were provided with hot drinks, asked if they could help in any way and then left to our own devices. Dennis finds the place completely relaxing so I thought it might suit Lisa. It did. Me, I just dashed to the enormous loo they have and gave in to the capecitabine runs. Humiliating?

Dr U was pleased with my eye and thinks the swelling is going down. Same with my neck lesion, which I can’t see but which I can feel is less swollen and softer. My hair line lesions and face unfortunately seem worse but he said that didn’t mean anything at this stage. Then he started talking about my blood markers. Oh joy! Ok, it was a bit scary seeing the data on screen - all I knew early on was that they’d risen from 29 to 68 so cancer was active “somewhere.” Then it went up to 128 just before I started treatment! My anxiety rocketed. But then it dropped to 112 after my first cycle of treatment. Heading in the right direction. I went off for my blood tests and Dr U rang me in the afternoon to say my markers were down to 86. Even better. I’m tempted to say that provides the motivation for round 3 but...

Then I slept most of the afternoon!

Not surprisingly, I woke early this morning and felt I had my energy back. It didn’t last long but it was a nice feeling. Even a conversation has proved exhausting recently. I shuffle rather than walk and I’m huddled over myself protectively. It’s not a pretty sight lol.

So, treatment apparently working(I’m learning to be cautious). Energy increasing as my blood cells revive, ready to get knocked down by the next lot of tablets delivered Monday afternoon. Before that though, I have to get through my 70th birthday. I’ve already received a load of goodies from Betty’s: 

including a splendid birthday cake (thank you, Trina) and I suspect the dreaded balloons are on their way (thank you, Trina). I wonder if Dennis will do anything special (like wrap the chain he’s giving me). Best never to expect, then anything turns out to be nice.

It strikes me that this diagnosis and treatment is sapping not just my energy but also my sense of humour. We did see a beautician waiting to be let into her shop, with the most amazing trout pout. Lisa and I decided we’d never use that beautician and I don’t need to - I get mine for free.