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: