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!