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?

255. Still Stable Mabel

 Yesterday was hospital day, starting with the support group in Maggie’s, which I had to leave early as my clinic appointment was at noon. I didn’t get in to see Dr U till 1.10pm so I could have stayed for the full group session and still had time to spare. But I was fine with the delay. He gives me all the time I need and I like to feel he’s doing that with all his patients.

My blood and tumour markers are moving about, but so slightly that it doesn’t mean much. He didn’t think my skin mets were noticeably changing and suggested the swellings of the eyelid are accumulations of lymph fluid that maybe has nowhere to go. Then he said that he really didn’t understand what was going on himself. I appreciated the honesty. Then he said that, for triple negative bc, things were staying stable and were unusually slow. That explains why I’m past the prognosis lifespan and creating my own. I’m feeling more or less fine on cape and that’s ok with me. 

The scary thing was that, even though I read on the 9th that NICE is delaying its final decision on Trodelvy till mid-August (probably because it had such a huge public response), Dr U told me that they have been told they can put no more patients on the drug. The manufacturers will honour their obligation to anyone already being treated but have withdrawn their current strategy they have with hospitals to complete their trials. So, as a second line treatment, it’s off the board for me. Dr U seemed almost apologetic but I’ve stayed realistic - it was always going to be a risk. So now we wait for our wedding anniversary, rather than my birthday. A few wonder drugs and treatments for stage 4 breast cancer have hit the headlines this week but none of them is for me. Triple negative is a bastard.

Just look at these - tip of the iceberg too

Yes, my birthday has come around again and if I haven’t yet got round to thanking people, a huge thanks for your cards and good wishes and, to Sheila, you know me too well. What you maybe don’t know is that, when something is so perfectly packaged, I often can’t bring myself to dive in and devour the contents!

Dennis just about redeemed himself after a mild altercation the day before when I knew he’d got me nothing. Knowing how hurt I would be, he thought quickly and the next day presented me with last year’s Bryan Ferry boxed set which I’d shown no interest in (would you if an Amazon box was just thrust at you, never mind how ill I was feeling because of the new chemo??). It was beautifully wrapped in Christmas paper this time and took him 35 minutes to get it right. It defeats my understanding how someone who likes everything to be in its place and all in straight lines cannot wrap a simple square parcel in moments! Anyway, it was the 35 minutes that I appreciated most. 

Then Fox & Finch delivered our afternoon tea, intended for my birthday but she was abroad! It came beautifully presented along with a smaller container packed with little extras for my birthday. We sat in the summerhouse (a first for D) and stuffed ourselves. That doesn’t take much for me but Dennis packed it in! And we still had almost a full container to store in the fridge. Guess what today’s food will be!

Summerhouse being used at last

254. Belly-flopping

Oh the indignity of slipping straight into the deep end and ending up floundering like a beached whale! I’ve been swimming twice this week (at long last) and the things I dreaded haven’t happened. I can manage all the stairs, I don’t get as breathless as I anticipated and I wear my plastic mules to stop me slipping on what are very slippery poolside floor tiles.

Attempt 1: 10 lengths, 5 times my goal. I confess to several pauses at each end of the pool and a bit of water-walking, but it all added up. Unfortunately I started by setting off in my usual graceful fashion, only to sink immediately and flounder about till I got my bearings. I hate going under.

Maybe Sheila will remember the hours I spent sitting on the edge of the pool at the Lido, in my height-of-fashion red and black cossie, dipping my toes while she and her brother darted about like fish. I felt very left out but even that didn’t push me into learning to swim. I waited till I was 27! I remember Stephen showing off a bit, diving in where the water wasn’t deep enough. Oh, his poor chest. It must have been agony. Nowadays the lifeguard would have immediately carted him off to A&E, terrified of being sued, In the 1960s, he just got back in!

Attempt 2: 16 lengths, again with pauses.

Things I have learnt: my right knee is going, not sure where and I probably won’t be allowed surgery; kicking the side of the pool is bloody painful with PPE; I sink lower than I used to so am drinking a fair bit more water; my back aches as a result of doing breast stroke too low in the water; my eyes don’t like chlorine - they were on fire last night. Best of all, I have negligible muscle strength so when I decided to do some leg exercises, I ended up slipping under the lane barrier helplessly and had no strength to pull myself back. I felt something of a fool, to say the least.

The Platinum Jubilee is passing me by. I support the monarchy and think the Queen has done a remarkable job, though I do think she should have abdicated years ago, once Charles was settled and grown up (ie a couple of years ago). I’ve got no time for all this press coverage and no wish at all to be adorned with Union flags which, to me, reek of jingoism. The highlight so far as been seeing Boris Johnson and his wife loudly booed as they entered St Paul’s. The lowlight so far has been the street party yesterday on the new estate. I am sure it was a community gesture and the children loved it but the pounding of unidentifiable music lasted from 11am to 9pm. Even my noise-excluding earphones let me down. I am an old curmudgeon, ready to join Dennis in his curmudgeonliness!

This cycle (19) has been the easiest so far. I’ve had days on bed but that was more mental than physical fatigue. My skin mets continue to harden but they are taking their time, thanks to capecitabine. My tumour may be stable but the fluid and lumps it produces are more obvious now and I have to keep massaging my eyelid to get better vision. There is nothing wrong with my eyesight, it’s just a pressure they put on my eyeball. I’ve also noticed the tiniest of changes deep in my nostril, as though there is now some pressure inside there, and the slightest of aches, but noticeable. I don;t know if this is the chlorine or if it’s what I have to come.

See - not so bad.
Who would think this is breast cancer!

My appointment is next Friday and of course it clashes with the secondary support group. I’m planning to go to the first bit so D will just have to stay at home (he won’t) or sit somewhere quiet in Maggie’s, hoping no one offers to talk !

Meantime, don’t take a leaf out of my book - enjoy the Jubilee. Maybe it’s because I was taken to The Mall to watch the Coronation and that was enough for me. All I remember is we had two Coronation mugs and I had a Coronation money box in the shape of the crown, but apparently I sat on my godfather’s shoulders and waved my Union Flag enthusiastically.