HP Sauce

My unwanted new journey through a cancer diagnosis

Easter weekend 2024

I read a book once, that, imperfect though it was, has stayed with me. The main character is given access to a plant, a rare naturally occurring drug, which simultaneously makes you go blind whilst heightening your other senses to such a pitch that you can see by sensing. He becomes a bit of a shamen, a spiritual leader.

The downside is that once you take too much, you just become blind, possibly irreversibly, and lose all your other skills of second sight.

I think that I'm following a path that feels similar: the act of finding a lump in my breast, the follow through with a call to the GP, the first visit to the breast clinic, the downward spiral into the terrible news that this is cancer, the intense quick turn around into starting chemo, passing through scans and more ultrasounds and the port insertion – all of this has been done with a tsunami of adrenaline coursing through my body in all my waking hours. I haven't been able to eat, I haven't slept beyond 4am, i have crashed through every intense emotional extreme possible.

And that weirdly brought its own energy, at least. The sheer incredulity of this happening to me, to us, right now.

But now, having had my first treatment, a different energy is settling on me, and it is heavy and dark. There's not going to be an adrenaline surge that can counteract the sheer exhaustion and discomfort of allowing chemotherapy to flood through your body. The poisons that we can only pray will attack the cancer cells that are currently flourishing in my left breast are also attacking me.

I have in front of me the long haul. One down, 11 more to go, then the next drug combo for another 3 months, once every three weeks; then surgery, then radiotherapy and more pembro. Such a long, long journey in front, and the first treatment has already taken away my autonomy, my strength.

I'm worried I won't be able to enjoy our wedding – my dearest wish is to be married to S, and yet I am starting to understand that I can't trust my ability to get through a day just because I am determined to do so.

S took the kids off today, skiing. The third scuppered skiing holiday since we have known each other: ill for the week last year, ill with covid during the half term one this year (I didn't go, but would have been trash if I'd been there), and now this one, which I can't join. My levels of superstition are a little higher than sensible right now, not sure I will ever book a skiing holiday again....

I hope they all get on and have fun. S doesn't want to be there, but maybe he will enjoy the physicality of the mountains before he has to come back to our much reduced world here. I really hope so.

Sleep now, as I have been either in or near all day....

Classic. Didn't get the memo telling me to be there at 8.30am. Jauntily rocked up at 10.10. So 10mins late for what I thought was my appointment, but two hours 40 late for the actual one.

Rock and roll chemo, baby.

I won't bore you with minute details of treatment through my writing if I can help it; having said that, a description of the first experience of chemo might be useful.

I take a seat in my throne, having had my height and weight done. The nurse (lovely, Clotilde, from somewhere in Africa with a French lilt) lets out an avalanche of info, then a litany of pre-drugs start going in to the port. No pain or discomfort even though the wound of the port is fresh. All good.

The pre's are an antihistamine (makes you drowsy) and dex (steroids, make you jumpy, stops nausea – we hope). Then on with the big stuff, Pembrolizumab – now approved by NICE, shown to manifestly increase the chances of triple-neg sufferers to not have recurrences. And then THE COLD CAP.

There's no way I can get all zen and deep with a cold cap on. It's very cold. It's very tight (otherwise won't do anything for you), it left marks and ridges deep into the skin of my forehead afterwards and now I will have bruising there. Also, lots of docs and medics and dieticians and pharmacists and nurses ALL come up to you to have a chat and impart info through your treatment. And the cold cap means you CAN'T HEAR!! Your ears are covered and there's a swishy noise.

I'm doing it for the wedding; so 3 more with the cold cap, then I'm going commando.

Too late for S, he'll be married to me by then so won't be able to escape the new hairless me....!

After the Pembro, the two chemo drugs, Paclitaxel/Carboplatin. I think the Carbo made me feel the worst, very out of it, heavy headed, wobbly on my feet, and hot on the inside.

I also still have the biopsy site hurting my left hand side underarm and breast; and the port is not healed, so is sore. So I can't use either arm. Which means I get to ask everyone else (especially M!) to make me tea and do things.

Enough now, I'm not very inspired, just weirded out.

S and I are wondering which god we have crossed. Did our love, and happiness, and lightness of being annoy a grumpy immortal to the point of notice? Two years of intense happiness and joy, that's what we have had. And I know – I know – that I should be saying this is a blip, our love will be made stronger for going through the fire. S says it, and I love him all the more for his determination. But did we have to be tested? Really? We were just so happy; now this love will have fire stains all over it in the best case scenario (the one where I don't die either this year, or it recurs next year and I die, or in three years, or....)

This was our time to still be “in our prime”. To be physically capable, enjoy the exquisite privilege of communing with each other's mind and body, enjoy our worlds, work hard, concentrate on our new blended family. We just fit with each other, we knew we could still have a couple of decades of this togetherness even though we didn't find each other in our youth, and we considered ourselves lucky; just so, so lucky.

In the two weeks since we received the diagnosis (only two weeks today, it seems like a lifetime ago), we have heard that my cancer is triple neg (most aggressive type), that it is possibly not two discrete cancers of 1.2 and 0.8cms, but one of nearly 4cms in total (meaning I now have to have pembrolizomab as well, with the possibility of long term consequences); that having told me I didn't, after all I do have the tiniest (oh so tiny) nodal involvement (that is the scariest of all, lowering my prognosis by a significant percentage). In the meantime S has had an unintended massive mind-bending drugs trip, we have had to cancel our initial wedding, my parents have had their life collapsed in on themselves, and my son – oh god, my poor beautiful M – is catatonic with grief and shock, not going to school, not able to get out of bed. Then S received a call to confirm that one of his main clients, source of much work, has resigned, which will significantly impact his work flow. And then last night the shower upstairs leaked through to the floor below.

I would like to formally apologise to whichever frigging god has laser focused on this household at this time, and just say I'm really, really sorry. For whatever it is that we have done.

Awake at 3am this morning, up at 4am. I'm having the port fitted today. By the time Jack died, his body had lost absolutely all of its fat content and his port protruded out from his collarbone with just a thin layer of skin over the top. On the day of his death, his sister had to leave this house early, having said goodbye to her brother forever, and travel back to her home in the west to accompany her 14-year old daughter to hospital to have her port fitted. She had just that week been diagnosed with non-Hodgkins lymphoma, and had to embark on a year-long treatment in and out of hospital. Some good news: four years later she is now bright and healthy and full of energy. But there may well be consequences of treatment through her adult life, not least in terms of fertility.

Everyone keeps telling me that I will “beat” this because a) I am a strong woman and b) it is just so unfair it simply cannot be. Again and again, I hear that I am strong. Flattering to know, I suppose. But the terror of this journey is that I'm going to be in the hands of the medicine, and my body's response to it. I can't influence that response by being strong, we have to simply hope that I am in the whatever percentage that does respond well. I can eat well, I can “take it easy”, I can minimise possibilities of infection; but I am not a moral or vital influence on this treatment. And as the description of these last two weeks above shows you, you can keep getting bad news, even if our human demand for tender emotional logic in a story would ask that there is a respite.

So I'm very scared now. No control, no agency. Just time and trust in the incipient poisoning.

Meanwhile enough Americans show enough disregard for decency to put Trump ahead in the polls for president. Why would any person get beyond the “grab them by the pussy” audio? Old fashioned redneck men should remind themselves they have daughters. Women should walk away in absolute red-mist fury and disgust. Putin covers his vast country with a blanket of pain and terror, blatantly murders Navalny, and yet nothing changes. The west seems to have got just a bit bored of the Ukrainian fight for existence. Gaza is an unimaginable hellhole. The world's bully boys seem to be teflon coated.

This world is not a place of joy in its current iteration.

Can you tell I'm feeling just a tad gloomy?

Oh my lord.

I'm not sure where to start.

Yesterday might just go down in my small history as one of the weirdest and funniest days of my life. Which given the context of choking gloom that I am wading through on a general basis, is quite a claim.

S is a bit of a snacker. Not a lardy, just-a-few-too-many-calories-each-day snacker, a high metabolism uber-active fit kind. If he doesn't keep eating on a regular basis he becomes hypoglycaemic. Literally starving. Metabolic shutdown.

Yesterday he had an online meeting in the afternoon. He felt a bit low sugar just before the meeting, and remembered that a kind friend had given us some fancy chocolate – the first of many pressies coming our way, I know – which was upstairs. When he looked in the bag, he saw the fancy choccies, and then he saw a simple looking chocolate bar on top of the fancy ones. Being S, he went for the simple, cheaper looking one, figuring that he'd keep the smart ones for me (i love him for so, so many reasons).

He had a bit, went and put on his grown up persona and smart shirt, and took the meeting.

The meeting was an hour, short for him (thank god, you will see why in a minute). He came out of the office at the end, and told me he felt really, really strange, low blood sugar, faint, clammy. He said “I'm so sorry” and sat abruptly down on the sofa. I said “what do you need?” and he pointed to the chocolate bar, and said, sugar, pass me the bar, and quickly ate the rest of it.

It got worse and worse, very quickly, and I called an ambulance. I thought he was having a heart attack, so did he (all he could say was that he was so sorry to leave me now, to do this to me). “Describe his symptoms” – short breath, clammy, couldn't feel his hands, couldn't stand. My body and mind went into battle mode, with time slowing to try and remember everything and anything I could to help. Note to self, at least I don't freeze in a crisis.

Ambulance response times being what they are in the UK in 2024, we had a full 20 or 30 minutes before they got here. Thank god it wasn't a heart attack. My CPR skills weren't tested. I'm not going to stay smug about not panicking, I think I would have if it had got to that.

S was together enough to ask me what was in the chocolate. I didn't know what he was talking about, then a cold wave swept over me. My gorgeous friends had told me that the present was to keep me going when things got really tough. I rang.

Yep. The Cacao bar was in fact....chocolate and magic mushrooms. S had just eaten the whole thing, enough to keep you going for months.

I made him drink water with lots of salt in it, then stick his fingers down his throat. I'm writing that here so that if you ever need to vom something up you will have the template. It does work, although too late to stop the strong dose that was already in his system.

Then the doorbell went. The first responders were here.

Oh boy.

Honesty was the best and only response, so they could help. They held it together very well, but I imagine that we will quickly become one of their stories – there was a twinkle in their eyes once they had taken S's stats and knew that he was all right.

Diagnosis; massive trip, will last several hours. Might see colours and hear noises with increased intensity.

They helped me get S upstairs into our bedroom, curtains drawn to reduce stimulation, then told me to keep him hydrated and wished me luck.

The next four hours were absolutely extraordinary. If hallucinogenics bring out the “real” you, heighten your “real” emotional state to absolute extremes, then I've now seen deep inside S's mind. And what did it tell me?

That he loves me. So much it hurts.

He veered from guttural howls of pain to giggles, and if I stopped touching him he panicked. So I didn't stop, I just curled up behind him (if I was in front apparently my face started changing colour and moving around, which didn't sound helpful) and put my hand on his chest. And tried to sooth. His howls of anguish were a constant (don't let anyone tell you that a trip is guaranteed to be fun): he doesn't want to lose me, he can't bear to live without me, don't leave me, I love you so much it hurts, you are the best of me. My wonderful, strong S, in normal life holding on to a determined positivity in the face of our new cancer-strewn world, showed his pain. Again and again and again.

Well, at least I know he really, really, REALLY loves me. I am a lucky girl, to be loved by someone so kind, so warm, so gentle, and who loves me to pain. I think we got to experience a decade of couple counselling in one evening – after all, all we humans really want to know is that we love and are loved absolutely. If you know that, you can work everything else out.

And then the giggles. Helpless laughter. Exclamations about the colours. I played soothing background piano music and that made him giggle, then cry. It was tricky to pitch the help.

Meanwhile....

This was the day I had chosen to tell my son. We had been to a doctor's appointment for him in the morning so he had the day off school. I had decided to tell him when we got home. The morning was spent holding it together, in freefall, building to a moment of unbearable release. The power of inflicting total pain with my words.

How do you tell a child who lost one parent to cancer that their remaining parent now has cancer? With apologies to those of you out there who believe, there is no fucking god. There's no logic, there's no correlation between being a good, or at least decent – or needed – person and fairness. Putin and Trump get to live on in power, I need say no more.

There are the gods, though. I think the Greeks and Romans had it right. Petulant, bored, sulky gods who meddle with their human playthings to pass infinite time.

M took it. I'm not going to say well. But calmly. Looking it up on his phone, seeing that the first entry shows that recovery stats for breast cancer are at 98%. We can explain that it is like a chronic disease, that it is nothing like Jack's 5% survival chance from first diagnosis.

But still.

He didn't go to school that day, he didn't go yesterday, he's not going today. And I'm not the one who is going to make him. But it hurts just so much. He's doing so well, he has a lovely group of friends, he was on a path of determination of his own young making. Will that go? It could. It did for Y. And whilst it's not my fault, it just is my fault. It's because of me, it's because of this. My poor, poor child.

He agreed that we shouldn't tell Y yet. I didn't lay it down as an imposed action, I asked him to tell me what he thought we should do, and he agreed strongly. Amazing boy.

Then he went upstairs, to his room, to take on his once again altered world.

And THEN, the ambulance arrived, and I disappeared with S, and was so intent on keeping S sane that I didn't and couldn't leave for long enough to explain for at least an hour. My poor son didn't know if the ambulance was for S, or for me – and I'd just told him I have cancer. He said he calmed down a bit when, listening outside our door, he heard first howls, then giggles from S, so he figured that the giggles meant it couldn't be bad.

Moral of the day? The drugs do work, they got that wrong, but I'm not sure you want to see where they take you. S's experience was a pure response, he had no expectation of mind altering, he didn't do that with any anticipation or knowledge, and it took him to a place of absolute grief. A good moral lesson to tell the kids (we did).

I told you you couldn't make it up.

It's agonising.

Who do you tell? Who do you need to tell? Can you get away with not telling? How do people do that?

I told my parents yesterday. Tore their world apart. My dad went into doctor mode – I knew he would, and had prepared an email in advance to send him all the medical reports and letters so far. But as with parents the world over, nothing else matters. I'm an only child, I'm their only child, and suddenly their life looks insubstantial over there and they want to be here.

It was one of the hardest things I've ever done.

I have a week left until something – and everything – changes.

Unfortunately I have way too much medical knowledge. Most women in this situation must feel they've woken up in a foreign land, no Google Translate in this swampy, desolate landscape. A sea of grey clay and an endless piece of glass between them and the trees just budding delicately into a spring gentleness on the other side.

Their only guide is the doctor in front of them uttering soothing words about “early stage”” and reassuring sentences about the chemo getting you to the nirvana of “no visible signs of disease”, after which the ops and further treatments spreading vaguely into the distance will leave you in a state of health where your life expectancy is as good as theirs.

The catch is the small word “if”. Said quickly: with your emotional pitch so high you might miss it. But this progression is still predicated on “if”. In my case, the “if” still covers an MRI and a new ultrasound request. The PET CT showed some sign of nodal involvement, which could be because of the biopsy and markers (local swelling response to that particular piece of invasion). Or it could not. And that takes me from a Stage 1 (the docs don't like to use the staging system any more as it is a clunky definition – but it's a brutal striation of my chances) to a Stage 2. It would mean a change of regime, with an op first, then a wait, then chemo. An op that will gnarl up my armpit and reduce movement in my arm for a long time.

Equally, my lovely oncologist, in doing a physical exam, said that the lump feels more like 3cms, not 1.2 as on the ultrasound. And that makes me doubt the radiologist the first time around, who admittedly was quite scatty – she forgot to do markers, so had to go back in and do two more biopsies to put them in place – four shots of the gun into my breast. Ow. And the first one was without enough local, so it bloody hurt.

You can see where this all goes in my overactive brain. I'm not there listening to the honeyed words, I'm looking for the shows, the tells, the ticks that really reveal your chances. My poker brain is on fire. Each little flinch, each hesitation or tiny eye-widening is a nail in my coffin, and I can't hear the comfort in them telling me this is early stage. It is until it isn't.

We had a photographer take some photos of us on Sunday, someone who might take the photos for our wedding. S and me. And the dogs. Just in our place, cutting bread, walking out into the garden. They are lovely, and I think they show our love, our equal intimacy and trust. We look happy, and well, and joyous. I have hair! All things that we are, just with a horrendous weight attached now. I'm sitting here with tears running down my face, and the happiness hurts. But at least I get to experience this love, this joy, this sense of belonging. Home with S, my soulmate and now my anchor.

Enough for now, I have to get my son up for school.

#cancer #love

The 4am ghasts. Here's a moment that makes sleep ever more elusive:

I read a “cancer diary” yesterday. Deathtounclejoey.com. Rhianna pulls no punches, so I guess she's a girl after my own heart. But it means the blows hurt. Shall I write one here?

“30% of early stage breast cancer survivors will have a relapse....the average survival at that point is less than 3 years”

Since J died, there has been a spoken and unspoken deal between me and the kids. I'm the survivor. I'm their rock. I'm not allowed to get ill. I've been asked to promise. Fudged that one, but was confident enough to be confident. Of course I was: what are the fucking odds that both fit, strong parents will have cancer at relatively young ages?

This is going to crack their worlds. My 18 year old daughter Y had a nervous breakdown that started a year after J's death. She's only just recovering; doing so, SO well. Her OCD demon (we called him Kristos) still lingers, mewling a little like the vanquished Voldemort on a white Kings Cross station floor. This news will give Kristos massive fuel, just as she is starting to beat her wings.

My (just) 15-year old son M is blossoming, doing well at school, a great bunch of mates, some messy teenage parties just starting (give me strength, there are 10 mates staying over at ours as I write, in various stages of fug around the house), sport, boxing and gym. Where will his unformed brain take him with this news?

We will find out later. Whether we want to or not, because of the cancelled wedding date, we have to let our world know this news. I mean, I'm still willing to try the phrase “cancelled due to unforeseen circumstances” but 250 people who we are either related to or are close friends are going to demand a little more detail than that.

And that means I need to start with the kids and my parents. Oh god oh god oh god.

Y is currently travelling, having fun and freedom on her year off. She organised her trip herself, a best friend from home has just flown out to join her, and it makes me feel sick to my core to spoil it. Can I give her another three weeks without this knowledge? She'll be angry with me, but can't I just let her exist in that relatively secure world for a little longer?

But then I'm telling M today. We have a ski trip in a couple of weeks, I didn't go on the last one (S took M and his own daughter T with him for half term. Lovely, beautiful man), and the one last year I was ill for the whole week (covid). So M's been challenging me to tell him quite how much I'm looking forward to finally going skiing with him. We thought of telling him that I've had a work thing come in which is so important that I can't come on the trip....but I don't want him living with that as my priority as a mother, even for a few weeks. It doesn't sit right. But he will have to not tell his sister. I just don't know if this will work.

And finally, I'm telling my parents later today. Oh god oh god oh god. My father is an oncological anaesthetist who ran the intensive care of two of the major cancer hospitals in the world for thirty odd years before he retired. He knows the score. It may kill him.

I'm anticipating both my parents deciding to jump immediately on a plane. They live as far away as it is possible to live. I don't take it personally (but to be clear, they left me!). But of course they have lives that can't be shut down in an instant. I have to persuade them that I am well looked after here (I am), and that at least one of them must travel to meet Y at the end of her trip with her home friend, and be there for when I tell her. That buys me a few weeks.

Oh, and S hired us a photographer, arriving at 12. To take photos of us together now, before treatment starts. Poor photographer man, his job will be to find and capture the last remnants of our lightness, our intense joy in each other that isn't stained with our new knowledge. It's still there, but the stain is spreading fast through everything. I'd better wash my hair.

Enough for one day? And it hasn't even begun. Hence no sleep...

#family #telling #cancer

So you couldn't make it up. Here's the facts: I'm 53, widowed, two teenage kids, living in London. My husband died in 2019 aged 48 after fighting bowel cancer for nearly five years.

My kids and I have been through the mill since Jack's death – we were deep in it through his illness – and have come out the other side to a life worth living.

I run my own company in the music industry, and I'm just at the point where my reputation gets me a constant stream of work. I'm good at what I do, and I've finally had the time and respect to become highly visible in my very niche part of the industry.

And with no small apology to Jack, I've met S: my soulmate, my sweetheart, the love of my life. We were planning on getting married in July this year. 250 of our closest friends from around the world at a massive party in London to celebrate.

And then I found the lump.

Well, lumps, actually, there's two of them.

That was Sunday 18th Feb.

I start chemo on March 27th, I've got triple-neg breast cancer – the most aggressive kind. I can feel it growing. And you know, I'm SO lucky: I've got private health insurance, my best friend is a doctor, my dad's a doctor (although I haven't told him about this yet, god I don't know how), and I'm in the hands of some of the best doc heads in this city, possibly the world. The transition from the NHS Breast Clinic at Guy's Hospital to the smooth moneyed environment of the London Oncology Clinic is a contrast worth revisitng later. Let's just say it will be a much, much easier journey this way – although not necessarily any more successful; that's in the hands of the gods.

The last month (has it really been so long? Has it really only been that short a time?) has been possibly the worst of my life, and I think I can genuinely claim to have had a few. All the lightness and strength of owning my hard won place in this world has gone, just vanished. The vacuum of their absence has now filled with adrenalin, nausea, and a heavy foreboding and weariness.

When Jack was ill I wanted to write, and god I wish I had. Details go fuzzy, however much you can't believe at the time that you could forget (did J have triple immunotherapy before HIPEC surgery, or after? – and apologies, this blog will get quite medical at times, I like the science). Beyond the facts, the feelings. We had good times – when were they? when was that small lovely day spent walking in the woods with the kids and the dog? – and bad (many, many bad). But sometimes I can't even remember events that justified my righteous anger (more of that later). Everything gets blurry and generalised.

And full disclosure, I've always wanted to write, in that slightly hideous “I've got 4 novels swirling around inside me” way of the non-writer. And if I don't do it now, that's it. I never will.

And I want to be truthful. The honest answer to my non-writing paralysis when J was ill was that if I told the truth I'd have to be pretty damn brutal about what I was really thinking, and what I thought of some family members, and I just couldn't. Wuss. I couldn't even work out if I should write long hand in a book and hide the book, or on my computer and lock the document. I was debilitated by medium, and by trying to appease and be the good wife.

So, with some pretty abject apologies to certain people who might feature here, and slight prayers that they never find this blog, I am here to be honest.

Because if I die, I want my kids to hear my voice. To know my truth (I don't say THE truth, there is always more than one interpretation of the truth, as Donald Trump is so keen for us to accept for all the wrong reasons), and take me with them through their lives.

Enough for now. My week next week involves an MRI, another ultrasound because one of my lymph nodes is looking a bit feisty (that's really rather bad news if it is, by the way), calling my lawyers to update my will (do it now, all of you!!!), getting my eyebrows tattooed, and visiting a salon that makes you a permanent wig with real hair. Life, death and vanity.

Can't believe this.

HP SAUCE

#cancer #breastcancer #diary

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