269. Sob sob…Specsavers!

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

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

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

1. The kindness of strangers.

268. Reasons I dislike Christmas

Sigh. Observations, not a pity-party.

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

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

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

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

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

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

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

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

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

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

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

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

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

267. Looking good

Not me, but the progression of this disease!

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

No sun — no moon! 

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

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

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

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

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

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

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

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

266. Zippidy Do Da….

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

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

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

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

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

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

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

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

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

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

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

265. Oh what a week!

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

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

So today I’m writing about…. 

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

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

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

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

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

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

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

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

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

But what you CAN say:

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

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

264. When ‘progress’ is not a good thing

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

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

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

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

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

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

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

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

263. Breast Cancer Awareness Month

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

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

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

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

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

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

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

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

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

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

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

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

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