270. OK, sometimes I get it wrong

 Yes, hard to admit but my Christmas predictions didn’t all turn out right. So here are my reasons for liking Christmas:

1. A husband trying really really hard, so hard it was almost tangible, to be nice and (much as I hate the word) positive over Christmas. Better than any present, to see him genuinely smiling.

2. Christmas presents, from a tiny terrarium (“I thought you can’t kill this one”), a goody box with sweets from childhood as well as Haribo and chocolate sprouts to an antique ring I chose months ago. Every present a joy - so thank you to everyone.

3. The kindness of strangers (see previous blog). The flowers are still thriving, though I can only remember watering them once.

4. Christmas dinner. Ok, the usual Sunday roast with some pigs in blankets for me. It always makes me think of that year, late ‘70s, early ‘80s? when D said there was nothing he fancied for Christmas dinner so I took him literally and served him a plate of baked beans with a sprig of holly in the middle. His face was priceless. He was more precise after that. 

5. Christmas crackers. We normally don’t have these as I find it quite difficult pulling one on my own. However, a friend sent a box of six rather up-market crackers and, being on his best behaviour, D agreed to join in. Not only were they pretty explosive, they yielded keepworthy gifts. We took the remaining 4 when we visited friends on Boxing Day and our collection included a rather pretty heart necklace (sent on to my friend’s 9yo granddaughter), a butterfly key ring I instantly coveted, a solid metal die, some cuff links (ok, who wears them nowadays??), some nail clippers that actually work and a nifty double-ended screwdriver to attach to a key ring. Unsurprisingly, gold crowns were not worn. I do know when not to push my luck.

6. Cracker jokes. Yes, they were corny but they also were quite witty. They also included charades (I drew the line at that one) and dingbats which were rather challenging. Example, a blanks space with the word ‘just’ printed to one side.* Most important, they made D smile (and groan)!!

7. Christmas cards. I am still awaiting delivery of my order from Etsy so very few people received cards from us this year. Apologies. However I think fewer people sent them anyway because of the postal strikes so the ones we received are treasured. Particularly the one designed and sent by Anne’s 7yo granddaughter with a reindeer design. It took me back to the Anna Newby School of Dancing, which I attended weekly from the age of 8 to 10. At a Christmas show at Brooklands, the local ‘mental hospital’ as it was known then, I performed Rudolf the Red-nosed Reindeer, singing and tap-dancing. I wore my red tap shoes, a red taffeta tunic and had red lipstick on my nose. Unfortunately, the lipstick wouldn’t come off properly so I had to go to school with a pink nose for several days. Miss Newby of course performed The Dying Swan. I thought she was beautiful.

8. Christmas TV. It’s not the same now there are so many channels and so many providers, but it was still fun to go through the tv magazine and highlight what I wanted to watch (ok, record) and there were still surprises. I watched Christmas Carole. To be fair, I tend to partially-watch as I’m such a fidget, but I got a real shock when I saw Suranne Jones, modern-day Scrooge, meeting the ghosts of Christmas Past in the form of Morecombe and Wise. It took a few moments to realise it wasn’t brilliant CGI but two actors who, in my opinion, were superb. They had the voices, posture, mannerisms, everything off to a T. Only in close up could you tell they were completely different people. 

9. Ted Lasso. This was my Christmas discovery on Apple TV (special offer for 6 months with Sky so why not?). Slowly I began to see why this has earned so many nominations and awards (including 2 nominations for best supporting actor for Nick Mohammed, my book group friend Litsa’s son, aka Mr Swallow, on the right). It’s smart, subtle behind the in-your-face appearance and so funny. It even got me past the fact that it’s based in a football club. Brilliant (and so sad now I’ve binge-watched the two series). Loved it!

10. Christmas lights. There have been fewer official lights in Bramhope this year, presumably because of the energy crisis. We still have the WWI soldier with his gun, a silhouette that always makes me smirk as it looks like a giant phallus. It’s outside the Methodist Chapel of all places!!  But driving back from Carole’s, the lights so many houses still displayed were absolutely beautiful. They made up for the hairy journey with black ice and too many headlights and traffic lights causing sensory overload. Maybe night driving is no longer for my chemo-frazzled brain!

So, unexpectedly I had one of the nicest Christmases in several years. Thank you Dennis and I’m sorry it only lasted two days till I said something to spoil it - but it’s my reality, not something to be avoided!! This week I am having another week off chemo (currently experiencing withdrawal but the next few days should be lovely) because of logistics - I either had to drive to St James’s on Christmas Day to collect my prescription or delay taking them, not an option as it would mean no longer seeing Dr T OR take a week off. No brainer.

* Just right

269. Sob sob…Specsavers!

I got a phone call this morning from the manager of my local Specsavers asking if I could pop in some time today. I assumed it was something to do with my prescription as I do need a referral for laser treatment. Anyway, when I arrived, I was greeted by the manager and she presented me with a beautiful bouquet of flowers on behalf of M, the optometrist who’d spotted my tumour and urged me to get a referral to Ophthalmology back in 2020, and the store “because of all you’ve been through this year”. I could have wept. I was so touched.

I’m guessing it’s because I wrote thanking M for virtually saving my life (you may remember my GP diagnosed dermatitis!). I had to pay a price though - a photo with the manager and M, for Head Office. Fortunately I imagine not many people read Specsavers Monthly (or whatever it’s called!). The funny thing was, I just removed my coat and scarf but M dashed to a mirror to check his sparse hair, straighten his tie etc. Then he asked to see the photo and requested a second attempt as his phone in his pocket looked untidy!! Men!

So, no. 1 on my list of Reasons Why I Enjoy Christmas will have to be

1. The kindness of strangers.

268. Reasons I dislike Christmas

Sigh. Observations, not a pity-party.

1. Christmas starting early November. Christmas not just being two and a half days but two solid weeks of desperately seeking to please everyone.

2. Thinking about presents, choosing the right thing for the right person, then not bothering to buy/make  them in plenty of time. This year two friends receive something I knitted pre-pandemic! I’d forgotten all about them (the gifts, not the friends). Unfortunately, there’s one unfinished and there’s no way my brain could follow such a complex challenge right now. Other presents haven’t been delivered. I’m stuck!

3. Ordering unusual Christmas cards from Etsy and not receiving them. Then not realising Royal Mail brought forward its ‘last post’ dates. No cards anyway so…sorry folks. One rude friend here.

4. Living with someone who genuinely can’t see the point of Christmas and is able to suck the joy out of it all with one shrug.

5. Living with someone whose response to the question “What would you like for Christmas?” replies “Nothing”. There are only so many variations on the theme of Nothing one can think of and, after 52 years, I’ve run out of ideas. This year, I had a brainwave. Then, in conversation, I was told he hadn’t bought it because it was a waste of money. Ok, drop that idea. Then (and this is because he’s too lazy to have his own email account) I see that the b****r has bought it!!!! For now, he thinks it’s a delayed delivery, thank you Royal Mail strikers; in fact, it’s secreted somewhere to be wrapped on Christmas Eve. Just one problem: I’ve forgotten where I hid it (:

6. Having to buy my own Christmas presents, thrust them at my husband and say “I hope you will wrap these this year”.

7. Seriously, realising that we have no one to share Christmas with. Everyone is tied up with children and grandchildren, relatives and friends. We have no children, grandchildren, relatives within reach or friends not committed to all those things. But even if we did, Mr Killjoy would find some way out of it.

8. Christmas adverts. Do I need to say more? At a time of austerity, they still paint that picture that the Christmas table must be laden with more food than anyone can consume, that everything must be perfect, everyone be joyous. My heart goes out to all those homemakers (mostly women) who are running round in circles and expected to come up with perfection on a limited budget.

9. At heart, as someone with no religious conviction, Christmas is about children. Without children, Christmas has lacked something essential and eventually become a time to be tolerated until it’s passed.

10. A gently nagging thought - will this be my last Christmas? It casts a pall over everything, even though the thought only pops into my mind briefly and occasionally. It saddens me that D will carry mostly colourless memories of me because he will add no colour, so low as he is.

11. Being a non-drinker. Not by choice or necessity; I don’t metabolise it well. The older I get, the more I wonder if my inability to enjoy myself more is linked as much to the absence of alcohol as to my phobias.

12. I HATE Christmas food. Turkey was not available in my childhood. With luck we might have a chicken. But all it took was “Look at those dead flies” whispered in my ear by my brother and… I have never eaten Christmas pudding, Christmas cake, mince pies… that leaves sprouts, which I do like but which taste very different thanks to chemo and require apple sauce as an accompaniment! So, chez le Brun, Christmas lunch will be exactly the same as what I had today - Sunday, meatless roast. I might get a pig in a blanket if Sainsbury’s haven’t sold out.

Will I be able to come up with Reasons I Love Christmas? I’m thinking….

267. Looking good

Not me, but the progression of this disease!

First, apologies if you’ve dropped by and found nothing. I’ve had a fairly bleak month but then I’ve never been great come Autumn. I try to see the glory of those falling leaves and all I think (oh, I have more in common with my husband than I thought) is it’s all dying! It reminds me of a poem we studied in the first form, by Thomas Hood:

No sun — no moon! 

No morn — no noon — 
No dawn — no dusk — no proper time of day.
 
No warmth, no cheerfulness, no healthful ease, 
No comfortable feel in any member — 
No shade, no shine, no butterflies, no bees, 
No fruits, no flowers, no leaves, no birds! — 
November!

At the time, I thought what a miserable old git! But it’s always stuck with me. Only 2 poems ever have (apart from the WWI poetry) and the other is the sumptuous Ode to Autumn so maybe that’s telling me something - everything has two sides at least. 

Anyway, four weeks since my last consultation, thanks to that wonderful week off that felt like a holiday. We saw Dr U on Friday (only a 50 minute wait this time and I still missed Support Group). My CT scan shows I’m healthy from thorax to pelvis and my blood markers have dropped from 28 to 24 so they are heading back to 18, my baseline. There was no tumour marker owing to some kind of Phlebotomy error. It’s pretty obvious there’s a struggle going on but Cape and I are doing well against the cancer. My tumour is definitely trying to grow - it’s visible and also I can now feel its presence near my sinus. Up till now, I’ve only experienced an occasional twinge but now it’s a constant pressure. 

So, I continue with capecitabine. I confess I really expected to be told it was time to move on to the baldy treatments but Dr U believes cape and I are still winning the battle. I’ve always hated this battle analogy that is the public image of cancer but sometimes it IS unavoidable. There is a battle going on. I watched the remake of All Quiet on the Western Front yesterday and it just showed the futility of war (maybe, in this case, because I knew the outcome). The parallel with cancer is right (ouch, that hurts to admit). It’s a battle. And in my case, we know which side is going to win. But there’s no harm in making it a lot harder for the cancer to come out on top!! 

Unfortunately, my cough is no better. Dr U believes it’s a virus I can’t shake off. The week off chemo did no good, the antibiotics made no difference - so now, clutching at straws, I’m testing the gastro-intestinal approach. I’ve been taking my cape tablets with an extra creamy Activia (what an impact on my gut - only one bout of cramps and diarrhoea) and Dr U is happy for me to continue. Apparently though, it’s a source of contention. Some oncologists believe it interferes with chemo and some believe it can cause infection (I got lost at this point so don’t ask how) but he believes there is insufficient evidence so he’s fine with me continuing with the Activia. He’s moved me onto Omeprazole but that will take time to work, if it works at all. So I also brought home a litre (yes, a whole litre) of Gaviscon Advance. I already have problems swallowing but this takes the biscuit. It is VILE. I managed 2 doses yesterday but my instinct is to swill out my mouth to get rid of the viscous taste, which would obviate the whole point of the exercise. I usually like aniseed and I persuade myself this is not much different from neat Pernod but… it’s proving a challenge.

Then bloods. The queue when we arrived was LONG. By the time I had to queue, it was way better but it was 12.45 and lunchtime loomed. It took over an hour to deal with just 11 patients ahead of me. Then I turned to D and said “I won’t be a minute’. Famous last words. Three attempts to find blood in my inner arm failed abysmally. Not a spot came out and it hurt like hell as she fished around. So she decided to try my hand. Straight in, no pain and lots of blood. But she didn't use the obvious vein they use to cannulate me. She went into a vein between two knuckles. Like I said, painless and effective. Then as I walked away, PAIN. Plus a mother of a bruise that’s very decorative on the back of my hand. Over 10 minutes to fill two small vials!!

So I’m really pleased. I expected D to be but no such luck. His attitude is that the good news is only for this time. Maybe next time will be bad news. He definitely experiences the scanxiety I seem to have avoided so far.  I TRY to get him to see that it’s not helping me but he accuses me of using emotional blackmail - it isn’t, it’s simple fact - and the case is closed. However, right now he is preparing our Sunday roast so I’m not complaining (well, only a bit lol). 

Meantime, the house is falling apart. A computerised component of the boiler has broken (no heating one day and it was impossible to find anyone to come out - till I rang the number of the bloke who did the service 10 days earlier. Bless home, he came in his own time, on the way back from work and he’s overridden the system so we have to deal with the boiler manually for now. It’s either freezing cold or belting out heat. Last month’s energy consumption was nearly 500 quid. What will December’s be, at this rate???). Then our 4 ceiling lights in the bathroom have failed one by one so I walk into a pitch dark bathroom, pull the cord and have to wait till one solitary light flickers on. I thought I had an electrician coming this week but he’s not committed to a day or time so I’m guessing that chance is gone. Heigh ho.

266. Zippidy Do Da….

Today will mark to beginning of a WHOLE WEEK OFF. I’d have danced if I’d had the energy.

We went for the usual consultation and I asked Dennis to come in with me as he now can hear what’s being said and I wanted him to feel included and informed! I started with a tale of woe as I felt shit, mentioned my cough, then of course started coughing and wheezing. 

So I ended up having a full medical examination. Did I mind taking my top off? No problem and I started to whip jumper and t-shirt off in one quick movement. Dr U quickly turned his back. Did I want a chaperone (eyes averted from my naked top half)? I’m 71 for god’s sake - and my husband is 6 feet away! So I clambered up on the bed (I do nothing elegantly nowadays), flopped back and lay there. Turned out I was lying on the ‘modesty sheet’ he’d set out for me. Lots of wriggling about with zero modesty and then I was ‘decent’, naked top half covered with a square of paper that was immediately removed so he could examine my chest! I’m assuming the paper is his protection from accusations of improper conduct.

I got a full examination, including checking my healthy boob, axillas, mastectomy scar, skin mets etc. I reckon the modesty sheet was only used when he wasn’t looking at me anyway. And what’s to see? A jagged scar across half my chest and round to my shoulder, plus one boob mostly under my arm… you’d have to be pretty unusual to find any of that arousing! Plus I still have a good reflex punch in me so I felt safe.

I do have a few new lumps in my skin but the face met, the one that was cutaneous and therefore did worry me, seems to be healing. (Quick check: no, back to normal - it must have just taken a few days’ rest). Otherwise all felt healthy, including my liver and, most importantly right now, my lungs. I confess the thought that my cough might be a symptom of metastasis to the lungs kept crossing my mind so, unless the CT scan shows otherwise, everything is fine for now.

Dr U first suggested a short course of penicillin for what he suggests is a viral infection. Then Dennis asked about my exhaustion which definitely has been worse this cycle - was it going to improve again? At that, Dr U changed the treatment from antibiotics to a week off chemo so my body can fight the virus. JOY! A week off chemo feels like Christmas has come early, a truly welcomed gift. So, tonight I start my week off. My meds are being delivered this afternoon but they will sit unopened for a whole week.

He then explained what he doesn't understand. He said there are two types of Triple Negative breast cancer, The first is unstoppable and just runs its course. The other is very aggressive but responds to treatment, generally for a few months and then the patient moves on to the next treatment. Then, he said, there’s my cancer. It doesn’t fit any pattern and there is no other case in the whole hospital. No one has come across it before.

He said it’s like my body works with the chemo and holds it back. Then my body gives up for a bit and the cancer begins to spread and then my body picks up again and fights back. So it’s containing the cancer against all the odds and all the scientific data. That’s why I’m monitored so closely and why, when Dr U isn’t available, I’m seen by the top nobs - everyone wants to see me! So I’m renowned, just as my mum was - not for any reason worth celebrating but because we are scientifically intriguing.

Hopefully my cough will improve over the next few days and my energy level improve so I can fit in maybe one trip to the gym, or even a swim. Anything to break the monotony of my ‘routine’ which is based on the principle that I have no routine.

We’d waited 84 minutes to see Dr U, then I had to queue to have my bloods done, so we didn't get home till almost 2pm. I could have gone to support group easily! Lisa was picking me up at 2.20 to go to the LGI for my scan so it was all a bit rushed. And the CT department was heaving!! Usually there are just a couple of others waiting so it’s not long before you get called. Friday was horrible - nowhere to sit and, for the first time, bloody-minded patients refusing to move on (one behoodied and baseball-capped couple did when the receptionist said she was going to ring security). I sat somewhere else once I’d been cannulated so I only heard the second fracas but some women screamed “I’m beginning to get mad now” and she did. The poor receptionist. Security had to remove the woman but receptionists really don’t deserve this. It’s not their fault if a patient arrives 2 hours late for their scan and she has to tell them she can’t fit them in. 

So, I am following doctor’s orders of bed rest (apart from when I spilt a whole mug of tea over the duvet), paracetamol when my temperature rises and, hopefully, no heartburn today. It’s been horrible the last few days and supports my belief that my ‘virus’ is in fact an inflamed oesophagus. But what do I know??

265. Oh what a week!

There’s no getting away from it. Slowly but noticeably, things are beginning to progress. Dennis of course is overreacting - I can’t even cough without getting the third degree (how do I know WHY I’m coughing??). My CT scan is Friday afternoon, a few hours after my usual consultation, so there will be no results for a further 3 weeks - unless it’s bad news and I get The Phone Call. I’ll just have to wait and see. Dennis is already convinced that things have spread but we all know how reliable his judgment on this matter is, bless him.

Meantime, I’m finding myself feeling a bit more vulnerable. I can still push away the intrusive thoughts (never good ones nowadays - where’s that adolescent ability to dream of John Lennon gone??? Now it’s just cancer, cancer and more cancer). I’m worried they are breaching my defences and I’m going to end up side by side with Dennis in the Jeremiah stakes.

So today I’m writing about…. 

The worst things you can say to someone with cancer, especially cancer of the incurable kind:

1. “So and so has the same problems and she….” Hold on. No one has the same problem. Each case is unique in its chemical complexity. Each personality is different. Each body, each temperament - both are unique. Comparing yourself to anyone else is futile and risky. I am ME and I’m doing the best I can.

2. “ Maybe you need to get out and about more….” Yes I know that and I would if I could. But most times I can’t because I suffer from chemo-induced fatigue. You won’t understand what that feels like until, god forbid, you experience cancer and chemo so count your blessing and button it.

3. “Any of us could be run over by a bus tomorrow….” Once I’ve apologised for blacking your eye, I might try to explain that the possibility is very different from the probability. Follow the Green Cross Code, or whatever it’s called now, and your possibility is low. But it’s a bit like I’ve been plonked in the middle of the road. The chances are a lot higher and, if the bus overtakes a bike, the probability becomes certainty. Not knowing what day your bus may come is hard for many. For now, I don’t think bout it.

4. “None of us knows what the future holds….” Absolutely true. But some of us have it in writing that our future is finite. When, of course, we cannot know. It could be the end of this week if neutropoenic sepsis gets hold; it could be some time next year, if the cells are multiplying and on the move; it could be a couple of years if luck and Dr U’s good judgment come into it. Plus of course my cooperation.

5. “My (blank) has the same as you and she’s been fine for (3,5,10…)years….” I’m really pleased to hear good news stories but does she have the same condition as I do? Triple Negative cells are complete and utter bastards, the Usain Bolt of breast cancer - one day they will be beaten but they are quick off the mark, born to move fast and utterly ruthless when competing against chemotherapy and other treatments. They will win at any cost.

6. “You’re looking so well….” Even oncologists say that. What it means is, I’m not bald, I’ve not got huge dark rings under my eye (tho my swollen lid does look a bit piratical), I still smile and convince people that everything is hunky dory. But looking well is rather different from feeling well or being well. I rarely feel well because of the effects on the body of the cancer and the treatment, but that often can be disguised in order to get through something like book group or an appointment. It doesn’t change the fact that I may well feel like shit and telling me I look well makes me feel that maybe things aren’t so bad and I’m being a wuss.

7. “Oh well, you’ve had your good years. It’s not like you’re in your 30s with your life ahead of you…” Yes, someone has actually said that, a member of the support group and therefore someone who herself has Stage 4 breast cancer. She is young and so justifiably angry at all her hopes and dreams being stolen from her by cancer. For that reason, she’s excused. What was that French proverb? “If youth could know and age could do…” I hate what she said but I understand where it’s coming from. To be diagnosed at 28 when you’ve just got married, have your fertility destroyed, then get a Stage 4 diagnosis and be rejected for both adoption and fostering on the basis that she might die at any time must be should destroying and the pain on her face when she blurted it out was heart-breaking. Sweeping judgments are forgiven.

8. “It’s really time to get your affairs in order…” No one has said that to me but others have been told it! At this point, if your oncologist says it, you know you’re in deep shit.

But what you CAN say:

Optometrist: “Your left lens needs laser treatment but I should wait maybe a year.” Either he doesn’t really ‘get’ Stage 4 or he’s an optimist, bless him.

OK, rant over. It’s just that one of those was said to me really recently and it’s been niggling at me ever since! Roll on Friday.

264. When ‘progress’ is not a good thing

Unfortunately, in Cancerworld, ‘progress’ has two meanings: the obvious positive and congratulatory sense and the ‘moving forward’ sense, which again can be positive but, in a tumour’s case, is NOT.

I am in the interesting position of meriting both. My Triple Negative BC is not behaving as my oncologist would expect and he’s intrigued. I got the impression from Dr U yesterday that he hadn’t expected me to last for so long on my first treatment, the dreaded but blessed capecitabine (fresh delivery next Monday) and my cancer’s progress is not as clear to him as he would have expected. So, I’m making good progress.

BUT my markers continue to rise (my tumour marker is more than double now so, suddenly, he’s saying “It’s only a number” to prevent me panicking). My blood marker has continued to rise too, quite a clear upward trend but “still within the normal range”. He might as well be yelling “Don’t panic! Don’t panic!” like Jonesy. It’s just the upward trend that is causing concern. Then there’s the fact that skin mets are popping up here, there and everywhere, while the original ones are improving or sleeping contentedly. Progression? Unfortunately one of the new ones is different. Rather than being subcutaneous, this one is like a tiny open cold sore. It itches, it stings, it forms a blister and scabs but it’s so delicate that just wiping my face with a flannel sets it off again. AND of course it’s slap bang in the middle of my cheek. I’m not letting myself think of how it might ‘progress’. 

Then of course there’s the tumour with its 2mm progression (NOT a good thing).

So off we go again, another ‘urgent’ CT scan to see what’s going on elsewhere. It’s like he can’t believe that it hasn’t spread to other places (back to it not behaving like TNBC usually behaves). I hope he’s wrong and there continues to be no sign of spread elsewhere because, when that happens, it will be over to IV treatment, not something I view with pleasure. 

I joyfully dropped Prof U in it by telling Dr U of the chaos that followed my last appointment, with no bloods instructions on the system (so Wharfedale couldn’t take the samples till a registrar at St James’s put them on). Then there was no prescription and the pharmacist NEVER makes assumptions, so there was no chance of getting my chemo tablets delivered on time (fortunately I had some spare tablets which covered the doses I needed, from the rare occasions when I simply have been unable to swallow the bloody things). Then one of my samples wasn’t processed properly so I had to return to Wharfedale for a second lot of blood to be taken - but they had forgotten to mark it ‘fast-track’ so…even more delays. I can just see my oncologist calling in his mentor to give him a bollocking :) 

We’ve just have our Spikevax at Woodsley Road where they looked after me so well last time. Unfortunately it was Moderna or Moderna. So I am armed with paracetamol (chopped into pieces I can swallow) and praying there is no repeat of the last horrendous reaction to Moderna. My arm is burning a bit but it’s nothing much, touch wood. I GOT A STICKER! SUPERSTAR!! How old am I??  I also got my eyes tested for new reading glasses and the optometrist was the same one as in September 2020, the one who must have spotted something was wrong and advised me to get a referral to Ophthalmology. It may have taken months but, in a way, that man saved my life so it was good to be able to thank him. My left eye may need a few laser zaps (my right was done early 2018, in my ‘other’ life, the one not dominated by effing cancer). So a shoutout to Shazam Mahmoud, one of my lifesavers.

I note the Emmerdale storyline drew to a close with a peaceful suicide to end the misery of MTNBC. I do wish they’d taken the story in a different direction. Maybe I’ll write a different version on here.

263. Breast Cancer Awareness Month

Ugh! How I loathe those pink tutus and pink wigs but, if it gets people thinking about breast cancer, even maybe checking their boobs properly rather than that cursory feel, gently prod and all is A-OK, then maybe it’s a good thing. BECAUSE, caught early, it’s no big deal, Maybe surgery and some radiotherapy. I think my mum had minor surgery on both boobs when the specialist centre opened in Guildford in the 1970s (?) and nothing else. I know she was dead chuffed because her Xrays travelled all over the place (before computers!) for training purposes. The second time, she had a lumpectomy and then 15 radiotherapy session, followed by tamoxifen for 5 years. 

So her daughter gets it and, guess what, there is NO genetic link. It’s sheer coincidence that I got breast cancer.

It’s really good to see Secondary Breast Cancer or Stage 4 Breast Cancer being given a higher profile but it still falls short for people like me because we don’t really fit in. We are that awkward group whose breast cancer is Triple Negative, only a small percentage of total cases, unresponsive to most treatments and most common in women under 40, of African or Caribbean origin… erm, try telling my body that.

 I’ve included this logo because, if you peer closely, you’ll see at the top the name of the charity that is beginning to give a voice to solely women with secondary breast cancer, so distinct from primary and so misunderstood. Anyway, rather than offload about the consequences of my appointment with the prof, I thought I would focus on Stage 4 TNBC. It’s probably because I took part in a zoom session with a visiting speaker and found it most interesting.

First of all, rid your mind of the Emmerdale story. It’s not inaccurate, but nor is it accurate. The fact is that Metastatic Triple Negative breast cancer is a condition to be managed, not the death sentence Emmerdale would have one believe. Do I watch it? I record it and just watch the scenes that deal with Faith and her family and her illness! 

I’m not sure of the legality of this screenshot but my readership is so ad hoc, I don’t think it will be infringing copyright or privacy. So here are the basics. Since it doesn’t have the hormone receptors that lie at the root of most breast cancer treatments, those treatments are ruled out. What’s left is a limited range of both older and newer drugs, some manageable, some with vile side effects. I’m not talking about trivia like losing your hair and weeping over lost eyelashes (as I did; hair I wasn’t bothered by), I’m talking about losing control of your body, uncontrollable vomiting, uncontrollable diarrhoea, hospital admission, unidentified infections causing neutropoenia and sepsis. Not much fun.

But it’s sheer chance and good luck if they land on the right treatment and your cancer responds to it. In this respect I’ve been lucky so far. But we patients are always aware that being stable or, as in my case, having the cancer under control is transitory. Every extra cycle is a gift. The body is still working with the treatment. But things can change very quickly and suddenly your blood results are sending red flags everywhere and it’s time to change. It’s a recognised fact that TN cells move fast and aggressively. Surprisingly, most cancer cells can be quite sluggish and spread slowly but surely over a much longer period of time. I was told by Dr U that he wouldn’t want me to go more than a week without treatment, which suggests to me that he recognises my TN cells will replicate fast, given the chance.

What is metastasis? Why is Stage 4 TNBC referred to as metastatic breast cancer? Because that is its key feature. The breast cancer cells have found another home elsewhere in your body. they no longer need that breast that was lopped off and they’ve managed to bypass those infected lymph nodes that were removed. They lie in wait and then do what they are created to do - replicate in a new home. Often it’s the liver, the lungs, certain bones, particularly the spine and sternum. Hardly surprising no one really seems to know what to do about my poor medial canthus. So when Dr U shook his head at the question “Have I been lucky?’ he was thinking ahead. How on earth will this progress? And I do think about it but only in an objective way. Will my tumour continue to grow and in what direction? Will my TN cells migrate to another home (there’s nowhere where they’d be welcome)? Will I need a liver resection, cyberknife treatment to the brain, a steel rod in my spine? These are all treatments people in the support group have had. Again, it makes me feel that I HAVE been lucky, so far.

Each new treatment is a new challenge. Your body must learn to accommodate it, not resist. While that’s happening, that’s when the horrid side effects can hit. But each cancer, even TN breast cancer that accounts for maybe 15% of all breast cancers, is individual. Diagnose two women with MTNBC on the same day and they will go off on very different journeys. It all depends on what the TN cells reveal (different molecular sub-types). It’s not surprising that the delay between diagnosis and treatment is longer than with your bog standard bc!

Is MTNBC a death sentence? Obviously yes, but not instantly. If one rejects conventional treatment in favour of quality of life (and you must have one fantastic quality of life to go willingly towards death rather than give it a good try), death is going to come sooner. Most women don’t go for that option - they hope treatment will work - and they put themselves in the hands of a multi-disciplinary team (MDT) which will consider all the options they have to hand or they know are available elsewhere on a trial basis.

When I first heard about trials, I was appalled. The thought of risking your life with something untested seemed stupid to me. I now understand things better and, in fact, qualifying for a trial may give you access to state of the art treatment as the data the scientists need is precious and must be precise. Unfortunately, my TN sample has failed all the entry requirements for every trial (maybe the wrong type of mutation, the lack of a particular receptor, the wrong DNA) but I will now have access to Trodelvy, which I do qualify for. Shame the side effects seem so horrible!

The big question for people with MTNBC is where do you stop in that eternal search for the magic bullet? I know of women who have worked through a whole list of treatments, three months on this, four months on that, and have yet to find that right drug. It’s heartbreaking to read their experiences and makes me feel grateful for my good fortune so far. I know it won’t last and I’m geared up for that. I have in my mind a line that I know I won’t be able to cross (probably vomiting, possibly the knowledge that the next treatment isn’t working) and I’ll make the choice to stop active treatment and start palliative treatments that will make life easier but not prolong it. I don’t actively think about this, I certainly don’t think about death, but there’s been an awareness right from the start that I will have to draw a line somewhere. Convincing D that it’s right for me, even for us both, is not going to be easy!

So that’s a personal perspective on MTNBC, incomplete of course because I have the concentration span of a flea, but a very personal view. Hopefully none of you will get it but, if you do, believe me over Yorkshire TV. I’m managing and living with it - and I never had a great quality of life anyway so I’m not missing foreign holidays and boozy nights out with the girls or dreading leaving my family behind. Maybe that’s made it easier for me to accept and adapt to it? I just wish the new chef could actually get his head round the new pressure cooker and not expect me to eat raw sprouts and mushy sugar-snap peas! (I interrupted writing this to enjoy my Sunday roast with no meat because D won’t cook it and he can’t bear cooking with me in the kitchen - I get in his way, it seems.

262. Shoes v cancer?

 Yesterday, I had a short-notice clinic appointment because they are short-staffed and overloaded. I had the pleasure of an appointment with one of the ‘senior team’, Professor U. I’d heard his name in the support group so I WhatsApp’d them and got “he’s lovely” (I’d been told he was a she), “he’s a bit scatty” and “he’s shit-hot on the latest research”. So that’s how the appointment started, with my telling him that. It certainly broke the ice because it took him straight into the research. Most of his work is research and it turns out he pioneered the trials of capecitabine in the late ‘90s and was delighted I was still on the drug and it was still working.

We (he?) talked for 45 minutes. he didn’t appear at all rushed so no wonder patients get antsy having to wait. He was particularly taken by my shoes, last year’s TOMS and I got ticked off by another oncologist for not wearing socks to avoid friction - she obviously wasn’t a shoe-fan. He also was intrigued by my comments on the Emmerdale storyline (subject for another post maybe), which none of his patients has mentioned to him and he’s going to take it up at the Trustees meeting of a charity recently set up - the UK Charity for Triple Negative Breast Cancer (UKCFTNBC - honest! You’d think all those brilliant minds could come up with something a tad more catchy). I checked that out and it has nothing there except requests for funding for research - too late for me.

So, much as I missed my lovely Dr U, now the ONLY full-time oncologist for breast cancer and therefore overworked, I actually enjoyed an appointment! Yes, he was scatty, yes he was lovely and yes he knew his stuff. My tumour marker has continued to rise, as have my blood markers, but they are still within the ‘normal’ range so nothing to worry about, just to keep an eye on. It means my cancer is there and active but the capecitabine is still containing it. But I’ve now seen a picture of someone’s fully developed skin met and it is f***ing awful. It should make me terrified of what’s to come but still it all seems not quite me. I don’t know if that makes sense but my mind just won’t take in what horrible things lie head. I’m relatively content with how things are, pottering along and doing ok. So, again thank god, it’s carry on with capecitabine, deal with the fatigue and the cape-tummy and continue to look like a healthy middle-aged woman. Yes, straight from the horse’s mouth. Looking well? Brilliant! Middle aged? I’ll swallow that!

It’s certainly been an odd time. I was shocked at how distressed I was at the Queen’s death. It really took me back to when Mum died in 2017 and I felt very tearful, let alone shocked. Now, who can feel ‘shocked’ when a 96 year old dies?? I didn’t plan following the developments but I found myself glued, with that sense of ‘awe and wonder’ primary teachers are expected to inspire in their pupils. As for the funeral, again glued to it and awestruck at the pageantry we have the privilege to exploit. I can’t think of another country whose military history can go so far back uninterrupted by revolution, war, whatever. What a ‘show’ they put on. Exemplary, eerie when the march began and, it seems, headed by my former colleague’s son, an officer in the Horseguards. If I’d only known at the time lol. Whether it was worth the cost or not, who knows? I think the new king acquitted himself very well. I just hope we cut him some slack but… with such a drip as our Prime Minister, I can’t see Charles remaining as neutral as his mama. I’ve always felt sorry for him, serving the longest apprenticeship ever, and hope he has a good ten years or more in him despite being a spoilt brat at times.

261. No Satisfaction in Being Unique

 OK, so here’s the picture:

CT scan clear - no evidence of spread to other organs

Blood markers 18 - 28 - 26. Hopefully the next measure will show a similar figure or a drop. A plateau will be good; a drop will be great; a rise will be concerning, even though the numbers are only a rough guide and are still within the normal range. Maybe I had some inflammation somewhere.

Tumour marker 7 - 9 - 11. Slow increase in line with the MRI result.

MRI shows “a small progression” of 2mm. It does sound small but I saw the tumour on screen and it’s only about 2cm (let’s face it, there’s not much space for more). So that makes it a 10% increase. I came away quite reassured but now it’s set me thinking. 2mm in 4 months, 2mm in the previous 6 months. It definitely is a progression and matches the tumour marker, 

So I’m to carry on with cape. More fatigue, more crackly throat, more constirrhoea (that’s the inflammation). Maybe one day I’ll treat you to a treatise on the occurrence and management of diarrhoea in the capecitabine cycle. What a treat!

I guess I have to pluck up the courage to ask more about this effing tumour but really they don’t know because they’ve not seen if before. There is no satisfaction in being unique! I did ask what was likely to happen with the tumour and got a strange response. I asked would it spread across my eyelid and affect my sight - no. Was it likely to grow across the inside of my nose - no. Would it grow outwards, like Elephant Man (I shouldn’t have joked, I know) - no. Was it likely to grow towards the brain - hmmm. A strangely non-committal no. 

What puzzles me is how I stay so calm about it. It’s really like it’s happening to someone else. Dissociation maybe but it works. So far. The fact is, it’s pretty miraculous that capecitabine has worked for so long. It can work for years with other types of metastatic breast cancer, but not for triple negative. So, again, I’m not fitting their usual model.

How I wish I had some idea of what lies ahead!! And if it’s that important, why haven’t I updated my will etc? The book I bought - What To Do When I Die - is practical and helpful but it’s American and although I can replace Attorney with Solicitor, it’s a pain having to anglicise the contents. And I have no desire to dictate my funeral wishes!!! I’ll let Dennis decide and if he wants to play Let Their Be Drums or something by Neil Young, fair dos. Could be fun. So long as he doesn’t play Richard Thompson or Alex Chiltern. I could never warm to them.

I did buy a nice book to leave behind though - The Book of Me. It makes you reflect on a lot of stuff so I’m working my way through the bits I like! 

Maybe a bit of a morbid read? Oh, the best bit. I nearly forgot. I took D to the doctors to get his hearing checked (ok, to talk about the stresses of caring for me - but D didn’t know that). When he came out he said Dr T had been a bit of a Job’s Comforter. Apparently he told my poor husband “It’s only going to get worse.” Hmm, that wasn’t quite the plan. BUT D has definitely been less morose and he is planning on making some music compilations so that’s progress. Meantime, I’ve been out for lunch and enjoyed brunch on Saturday, sitting outside because Anne had a dog with her. I seemed to me that the only breed of dog around was cockapoos! Bear is lovely, which is a real accolade from me as I’m not a dog person. I’m still craving a lap cat!!

260. It’s been so long….

 Yes, folks, it seems a long time since I updated this. It’s been a very exciting month (NOT). Another wedding anniversary, this time passed with no acknowledgement which I found rather hurtful, having taken my husband to his favourite restaurant on the Friday before, Explanation - he “can’t celebrate”. So that’s it? Another example of how he is so wrapped in his grieving that he forgets that I’m the one with this effing disease! 

Rant over. The fact is, we have different responses and neither can fathom the other. For now I am still pragmatic. I can’t change anything so I just worry when I have to. I don't spend hours dwelling on what is going to or could happen. I am however being practical, trying to sort out my finances and work out what I need to have sorted. I ordered a book for my husband and executors called What to Do When I Die and it looks very helpful. Unfortunately D saw the order and it’s sent him even further down the path of misery. FFS, we know it’s inevitable. Maybe if I were more ‘ill’ it would make more sense to him but, right now, things are running relatively smoothly apart from 1. Bouts of lethargy that I know are fatigue and 2. What I’ve come to call constirrhoea, where my body can’t decide whether I’m constipated or have diarrhoea and compromises on fearful cramps and hours on the loo. There is no room for prudishness with cancer!! I must admit this cycle has been rather trying and pretty exhausting.

My last two appointments have been telephone consultations, the first by choice; the second, I am mortified to admit, by sheer carelessness on my part. I received my appointment letter and saw 11.30, put it in my diary and that was that. Dr U, 11.30. Only it actually said Wednesday and I didn’t notice because my appointments are always on Friday. So at 12.15, I got a phone call from the head of the team asking if I was aware I had an appointment at 11.30. As I said, I was mortified. Dr K wasn’t bothered. As he said, he was able to write several reports, which was kind of him but to miss a precious NHS appointment and then be given a full half hour telephone consultation is rather generous.

So I learned that my CT scan is clear, with no sign of spread to any organs - yet. My bloods are still slightly raised but within the normal range (they have always been way lower than any of your readings, thanks to capecitabine! Yes, you have blood markers too, average healthy adult scores around 35; I’ve been at 18 for months but am now up to 28). What I don’t want to see is further increases because that will mean capecitabine has run its course and I must switch to a baldy treatment. That’s when my anxiety will set in. Not for the hair loss - I’ve managed that before and it grows again (only, how can it grown again when you have the treatment indefinitely?) but for the stress of weekly hospital visits and the serious fear of the side effects. Oh, and my MRI report wasn’t back and that’s the indicator because they will be able to measure the change in my tumour and decide if the slow progression is still slow enough. So, I’m not quite Stable Mabel but I’m doing ok.

I guess the highlight of this time has been the heatwave. Having reported a reading of 38C, my brother firmly put me in place by saying that Melbourne last year register 54C. But they are prepared for it - air conditioning! Me, I had a rotating fan and cold flannel. I spent my time wearing the flimsiest kaftan (me? A kaftan??) reading on the sunlounger under the trees where, actually there was a tiny and increasing breeze. I got a lot of reading done.

Another highlight was that my friend Anne’s granddaughters, well, the 2 older ones, and their two friends organised a bake sale and raised £120 for Maggie’s. Apparently they made fliers on lampposts, used social media and baked all sorts of delicious cakes and buns, along with making lemonade, and set up stall at the end of their cul-de-sac. They were then invited to the Maggie’s Centre at St James’s and photographed with a giant cheque. Since it went onto social media, I don’t mind PROUDLY sharing it here. It kind of chokes me to think that they were thinking of me, especially as I hadn’t seen them since lockdown. However, I met up with them in the local park last week - and they were so shy, they could barely look at me at first!! So I took a photo of what was left of their very sophisticated drinks whose name escapes me - turned out it was hot milk with a dusting of chocolate so it looked like a cappuccino.

On the downside, I had a horrid experience in the park. D was in the dumps, having spotted that book title, and refused to come with me so I had to manage walking on my own. I got very tired just walking across the car park and down some steps, then I had to go across an underpass that is like an old railway arch. The ground is timber, a bit uneven in places. Manoeuvring across that was a bit dicey and I wobbled a bit, then I trod on my own foot (the neuropathy at work) and I heard this laughter, followed by “Is she drunk or what!” I leant on the bridge getting my breath back and saw it was two raucous teenage girls I once could have flattened with a look (in the classroom), with their families. I felt so humiliated and vulnerable and at the same time wanted to put them in their place but, armed with their phones, I’d have been plastered over social media as the drunk in the park! What has happened to kindness? As a teenager, at worst I’d have stayed silent, at best I’d have gone over to see if the woman was ok, drunk or not. Now people just seem to feel it’s ok to be callous and take the piss. I so wish something could be done about my balance, I’m sure it’s just that my brain needs a bit of retraining, but, to be frank, as soon as departments see Stage 4 cancer, they aren’t interested - it’s hardly a good use of limited resources. I guess I could consider seeing someone privately - that’s only just occurred to me - I am so wobbly when I’m tired, I’m covered in little bruises from walking into door jambs.

On the bright side, I had some reminders of childhood. David and I used to go and collect bullrushes from the local pond (for heaven’s sake, no worries about health and safety then, just whether we got our socks and shoes dirty. We did) and I haven’t seen any in years. And I also spotted Cuckoo Pint, something from Brownies or Guides; anyway, I knew my wildflowers. That lifted my spirits, gave me time to get my breath back, and continue the trek to the café!

Peer. They ARE there!

259. Up and Down

That seems to be the pattern of my life right now. If the sun comes out, I find myself marginally more active but mostly spend my days reading. My skin is more fragile so an afternoon reading in the garden without sun cream led to my having remarkably brown feet (I’m getting there, Sheila - feet, lower legs and chest all brown - rest as pale as ever!) and shedding more skin than I thought possible. That doesn’t augur well for my Spa Day in September, Dr U has said to avoid heat and now I know why lol.

It looks so impressive!

If the sun doesn’t come out, I find that I am remarkably passive and even downhearted. I get emotional over the Commonwealth Games though usually I am repelled by celebrations of “English” successes - too UKIP for me. I am British and I hope never to see the breakdown of the Union. Well, when you think about it, it’s quite probable that I won’t see it. I did reflect yesterday on whether I’d ever see another Commonwealth Games - of course I won’t - yet I still cannot relate to the fact that my life will be curtailed. Strange. It’s not denial. I know the final outcome; it’s just it doesn't feel real to me, even when I’m glued for two days to the toilet with Cape tummy. 

And when I look at the statistics, it’s even more unreal. Ok, for a lot of the time I feel weak and feeble but 

And 18 months on, I’m still here and feeling no different. I truly can’t get my head round it but nor can I pluck up the courage to ask Dr U what’s going on. I do have the opportunity next Friday when I’ll get the results of my CT scan (has it spread anywhere else yet?) and my MRI scan (is the tumour stable or growing? Last time I think it had grown a tiny bit). I am genuinely expecting to be told to carry on with the cursed capecitabine as everything seems stable. And ‘seems’ is the operative word as I still haven’t had a PET scan to light up all the skin mets - some are a bit harder but others seem to have shrunk to almost nothing. I shall just have to wait and see what he thinks. But if anything were amiss in the reports, he’d have rung - you can’t hang around with TN cells!

OK, I m off for a rare opportunity for a cuppa with Carol. I seem to be off everyone’s radar now, which is pretty lonely. And yes, Lesley, I now remember I owe you a reply!

258. A bit down

Just a quick update as there’s little to report and too much to reflect on. I had a phone consultation this time, to help with the hospital’s appointment congestion. It was too soon for the CT scan results, though Dr U would have pushed for them. However, I’ve got the head MRI next Friday so I guess he’s waiting for all the results. As it happened, I was on the phone with an oncologist new to me, a Dr Z who sounded about 10, and Dr U rang the landline. So much for saving them work.    

Maybe it’s because I didn’t have a face-to-face consultation, but I don’t feel so confident this time. I’ve nothing really to go on except my markers have risen a bit (first real change in 16 months, which is a long time for TNBC), I have a few new but tiny skin mets - and an uneasy feeling that doesn’t sit right with me. I’ve got to make sure I don’t spend 3 weeks in perpetual anxiety, which is what a lot of women do (according to my Facebook groups) and I mustn’t try second-guessing but it’s way too easy in Cancerworld.

Meantime, the piece I wrote about NICE and Trodelvy, which I adapted and expanded to meet the competition requirements, got me longlisted (20 out of 1100+ entries) in an international competition so I was dead chuffed about that. Unfortunately it’s not inspired me to write more. I guess I was so furious that I had to find an outlet then (the competition is called Furious Fiction) but now NICE has reversed its decision on Trodelvy and it’s there waiting for me if and when I choose to have it (a big IF, since vomiting seems to be common!), I’m back to the usual lethargy. To be fair, it’s been a lousy week, the 2 heatwave days sandwiched between frequent bouts of the Cape runs - it’s so enervating. Aaaarggh!

Now I need to find a jolly picture to brighten this up. I give in. THIS is what I want:

257. Knees bend, arms stretch…and YEAH!!!!!

 

Today I participated in a pilot online exercise class set up by Look Good Feel Better. Here’s our instructor (I’ve ‘disguised’ her as I don’t have permission for the photo). Now, to me, this is a picture of an exercise zealot, absolutely ruthless - and at the end of the 30 minute session I felt that I’d been through the mill.

The exercise demon

So, what did we do? Most was done sitting on a chair, for a start! All it involved was constant movement and stretches, set to 1950s rock’n’ roll.  Nothing that the average cancer patient would find demanding and I can imagine feedback may include requests that it’s stepped up a bit. I was fine doing the stuff sitting on the chair but then we had to stand up and use the back of the chair for support. Unfortunately I’d placed it on a folded rug (folded to preserve it from Del’s claws - what a waste of money). It wobbled, I wobbled. I even tripped ! At the end though, I was quite proud that I’d stuck with it to the end, especially as the first couple of exercises triggered my bowels and I was perilously close to dashing to the loo! I worked through it, thank god. So now it’s…will I join in regularly? I’d prefer something once a week so I had a routine because I am dreadful when it comes to exercise. The laziest cow you’ll ever find lol.

I got a call today from Radiology later on. I have my MRI booked for 29th but had heard nothing about the CT scan. Anyway, they have a cancellation tomorrow at the civilised time of 11.30 and the lovely Lisa (she who does not live next door any more) is taking me. So now I have to convince Dennis that I’ll need to take my medication earlier, just for once, as I can’t eat for 3 hours before a scan. That’s going to be a challenge for him. Change of routine and Dennis don’t mix.

Apart from that, it’s been watch this space, except there is no space because our PM doesn’t have the humility to look at what people really think of him and do the decent thing. Does he really think he can hold on till September? Last week I was sickened by the lack of contrition, self-awareness, the horrific sense of entitlement… I could go on. Personally I don’t think much of any of the candidates but I guess I’m Team Sunak - better the devil you know? But he’s already stood up to a lot of Tory MPs, holding his ground on taxation, so I can’t see him uniting the party. I could see him being a dignified leader though and maybe for now, that’s what I’d like to see. Johnson has shamed himself, his position, his country. If you’ve ever had the misfortune to read his biography of Churchill, his ambition to be the next Churchill creeps through every chapter. Ugh. Fortunately he’s failed. And I was delighted to see Javid fall at the first hurdle - I can’t forgive him for ruining my privacy and peace of mind. Sitting in the garden is shit now. Noise, noise and more noise - and of course I’m a sensitive little soul nowadays. I find ambient noise impossible to cope with nowadays. Do I blame chemo or age.

Speaking of which, Happy Birthday tomorrow Lesley. I’m guessing I owe you an email - I owe so many!! And the day brings the best news possible for me : The Guardian has reported that NICE has done an about-turn and is now endorsing Trodelvy for use in NHS England and Wales. 

I heard via a WhatsApp group while awaiting my CT scan and I had tears in my eyes. How someone can be overjoyed at the prospect of their veins being pumped with a poison that will strip them of all hair (except leg hair, I bet), make them feel they can barely get off the floor at times…it defeats me. Maybe it’s the jot of hope that it will provide an extra year or so to add on the calendar. And, hopefully I’m not ready for it yet! We’ll drag out the Cape as long as possible as I almost feel myself at times.

CT scan went well, though I asked if they’d put the contrast dye in a bit more slowly, just to see what difference it made. There wasn’t that rush that pressures your bladder so you think you’ve peed yourself but it prolonged the bit I hate - the heat in my throat went on and on. Thank god I was lorazepamed! Just a small bruise on my hand - for now!

The chamber

256. Update

 Life is incredibly dull. Highlights include getting 20% on Cyberjammies (2 pairs have to go back, they are so tiny), the glorious peonies Marilyn and Clive gave me that are still going strong 10 days later (thanks to M&S) and managing 20 lengths at the pool last week. Oh, I’ve also got a few good sunny afternoons reading in the garden and having a sunshine nap in the summerhouse!

Yesterday was my routine appointment at the oncology clinic. God knows what’s going on there but I didn’t get my appointment till 3.30 the day before - and they said 8.30! I don’t do early mornings especially on my week off meds. On the plus side, the traffic was good because it was before the school run, I managed to get a disabled parking slot, and we got there in plenty of time without my being out of puff. There was also no queue for bloods (I bled like a pig again!).

So my blood markers are 17, my tumour marker still 7. I am stable. But am I? I have a couple of small but new skin mets that I can’t see so something is going on and Dr U has referred me for yet another MRI for my tumour so obviously he’s spotted something he wants checked out. I also have my routine CT scan coming up - hopefully it will confirm no change. Dennis took my prescription down to the Boots shop and practised saying ‘Amitriptyline, Elastoplast and aspirin’ for when they asked him about my allergies and was a bit miffed because this time they didn’t ask. 

So, on Monday I start Cycle 21 of the wonderful capecitabine. I get the impression Dr U didn’t expect me to respond so well to it. There’s a women in one of the Facebook groups who is on cycle 62 so maybe……

What I don’t get is how/why I feel so calm about it. Stable - I should be delighted. Uncertain - I should be in a panic or at least anxious about the possibilities. But I just feel … shruggy.

We then sat in Costa for 70 minutes while my gigantic mug of tea cooled down a bit and then went over to Maggie’s to kill another 50 minutes before the Secondary Support Group started. I managed to locate a comfy place way out of sight of the therapists so no one would approach Dennis to see if he needed anything and he then sat for 2 1/2 hours doing nothing. I’d have gone potty!

Support group was ok but there were only 5 of us there for a visiting speaker, a solicitor from Wakefield who did a PowerPoint identifying all the legal and financial stuff we need to consider. Having met with Robert and received emails from his friendly solicitor and his PA, I reckon I have enough information but it was good to be able to speak freely about planning for our death and the aftermath. D would have had a dicky fit if he’d known what the topic was - he has just shut down completely on finances. 

Oh, I got my 5th vaccination (second booster) by digging my heels in. I’d heard nothing from my GP practice (no surprise there) and nothing from the NHS (a bit surprising) but it was 6 months since my last booster (the vile Moderna) so I went online and booked an appointment at The Village, a hotel near here. It was practically empty there. But they were only offering Moderna. I explained how ill it had made me when I had it 6 months back so the steward took me down to talk to a nurse. Same explanation, still no Pfizer. Eventually the pharmacist joined in, said the side effects were the same, Moderna or Pfizer, but given my situation I should have Pfizer. Only they had no Pfizer so I was advised to ring 119 or my GP practice. The latter didn’t seem to be an option so I rang 119. It is death by a thousand cuts. Every time I chose my option, it referred me to their website (which hasn’t been updated since March so is useless). I lost count of the number of times I pressed 2 but after about 15 minutes, I got through to a real person. Unfortunately he had a pronounced Pakistani accent and I couldn’t understand a lot of what he said despite having taught Pakistani girls for decades. I could have wept. I kept saying it was a bad line and I think he lost patience. His advice was to ring again in the morning when they might be able to find somewhere local with Pfizer supplies or to ring my GP. I did that at 2.30. I was 19th in the queue. What the hell is going on!!!

I had a good moan to lovely Trina and 20 minutes later, up popped a link to a walk in vaccination centre in Burley. What a gem she is. So off Dennis and I trundled the next morning. Same response - only Moderna. I explained my circumstances and she explained that the NHS directive was to reserve Pfizer for children and under 18s as they can’t have Moderna. BUT she thought I needed Pfizer so off we went. I didn’t even feel the injection but was asked to sit in the waiting area for 20 minutes just in case. The person who’d done the jab came out and sat with me and we just chatted for almost half an hour. She was a veterinary nurse! She volunteered when the vaccination roll out began and loves it. She thinks she’ll apply to stay on, train as a nurse maybe. It was me who tentatively suggested the 20 minutes must be up! Excellent treatment at Woodsley Road medical centre, rubbish parking! A mildly sore arm day 2 and 3 and nothing else, not even a temperature. Since then I’ve read of so many women who are on chemo and have reacted badly to Moderna. The young woman next to me in the support group said she’d had Moderna on Tuesday and today, Friday, was the first day she felt ok! It’s time the NHS listened.

So, in another week’s time, I’ll be well-protected and less wary of mixing with people - the infection rate in Leeds is still increasing! Why aren’t we back to masks and social distancing?? Everyone wears masks at the hospital (where apparently Covid is running rampant) yet I was the only one in the support group masked. Maybe it’s an age thing?