Friday, January 10, 2014

Bullet dodged…

It seems this bullet didn’t have my name on it.

The new lump was scar tissue, no cancer cells found.

 I am fine.

My life is still mine and I don’t have to give it back to the surgeon, the never-ending rotation of charming oncology registrars, the Dexamethasone mania and the Pink Helmet of Doom in the chemo ward.

Not this time, anyway.

MamaFo rang yesterday from her fortified redoubt in the Tramuntana Mountains of Mallorca to chastise me for not updating the blog immediately to let everyone know as soon as I got the good news last week – for which I do sincerely apologise, but things have been a bit fraught, one way and another – and also for writing such a horrible, panicky, frightening blog post in the first place, and scaring everyone half to death.

‘This blog was always about the day to day reality of having cancer, Mother.’ I replied. ‘People who’ve had cancer treatment get scares about it returning every now and then, and the blog post reflected exactly what it feels like to experience that.’

So I’m not going to apologise about that.

But my next post is going to be very cheerful –watch this space.

Sunday, December 29, 2013

Holding my breath, fingers crossed…

There was an overwhelming sense of déjà vu as R and I sat waiting in the breast clinic on Saturday morning, surrounded by other anxious women, none of them smiling. 

The breast clinic is the place where nobody ever smiles. 

I remembered the sheer choking terror of my first visit there, just over a year ago, the surgeon who didn’t condescend to introduce himself to me, the two hours I spent lying on a bed on my side with my arms above my head having endless ultrasound and two biopsies, how they knew I had cancer but I was too dazed to ask, and so they didn’t tell me until the following week, when we came back for the pathology results…

Ah, happy days.

This time it was all rather different, however: a pleasant female surgeon, only a couple of minutes’ wait before going for the ultrasound, and a huge sense of relief as the doctor stared at the ultrasound screen and immediately said ‘It looks like scar tissue to me’.

They did a biopsy, nevertheless, as you can’t be 100% certain of a negative result from the ultrasound and, as the surgeon said, ‘Sometimes there are surprises’.

I will go back to get the results on Friday.

In the meantime, I’m holding my breath and keeping my fingers firmly crossed.

I’ve only just got my life back, and I’m praying it’s not going to be taken away again.

Friday, December 27, 2013

Why Jennifer Saunders is wrong about breast cancer

I’ve spent Christmas trying not to think about whether I’m going to die soon, and have been quite successful, on the whole. Just over a year ago, I was diagnosed with invasive breast cancer, since when I have undergone a lumpectomy, 5 months of chemotherapy, 3 weeks of daily radiotherapy, and am now taking the anti-oestrogen drug Tamoxifen every day. My body – and mind - have taken quite a battering, but the cancer has been attacked with all the current state of the art oncological weaponry: I have been mutilated, poisoned and burned, and now the ‘wonder drug’ Tamoxifen is playing havoc with my hormones. The cancer should have been beaten into submission, and my prognosis is excellent, but…

Two weeks ago I found another lump in my theoretically now cancer-free breast: a small, hard, irregularly-shaped lump very close to the scar where they removed the sentinel lymph node near my armpit during the surgery. Blue dye is injected into your breast beforehand, and the first lymph node in which the dye appears  is called the sentinel lymph node. If the cancer has spread beyond the breast this is where it will go first – so they cut it out, and check. My sentinel lymph node contained a tiny clump of cancer cells – what they call a micro-metastasis – which is why I had to have systemic chemotherapy treatment as well as local radiotherapy on the affected breast: the cancer had just begun to spread beyond my breast into the lymph nodes.

It’s hard to describe what happened in my brain in the seconds after my fingertips found the new lump; something like a car engine flooding, I imagine.


I had always thought that if the cancer came back, it would be by metastasising to my bones or my brain, which are generally the places where breast cancer likes to go next once it has escaped from the confines of the breast; it never for a moment occurred to me that it might return in the same breast, what they call a ‘local recurrence’. My big fear was of ‘circulating tumour cells’ managing to escape into my blood stream, dodge the chemo, and then swim off to colonise pastures new. 

Lumps were no longer on the agenda, until two weeks ago.

Once I stopped panicking, I emailed the news about the new lump to my Breast Cancer Care Nurse, Vanessa, saying that although I knew it was probably just scar tissue, I was a little alarmed, and asking what she advised. She emailed straight back saying that of course it was probably scar tissue, but that the lump should be investigated; she had booked me an appointment at the Breast Clinic for Saturday 28th December. I would see a surgeon and, if necessary, have a mammogram, ultrasound and biopsy.


Naturally, I googled.

It is overwhelmingly likely that the lump is either just scar tissue that I simply hadn’t noticed before, as I have left the sentinel node scar alone, for the most part, or the charmingly titled ‘fat necrosis’, i.e. a random little lump of fat. It's too hard to be a cyst, I think. Sometimes, however, new tumours do appear near scar tissue, and that lymph node did have some cancer cells in it. The consequences, should it turn out to be a recurrence of the cancer, don’t really bear thinking about: probably a mastectomy, a complete lymph node clearance with attendant risk of lymphoedema and loss of arm movement, and last but not least more chemotherapy.


Imagine that.

I can’t imagine more chemotherapy, actually. The horror of the FEC chemotherapy remains with me still, and whenever I see that photograph of me in the pink helmet, or even just think about it, I shudder, my stomach contracts and I want to vomit. My mind just can’t encompass the idea of more chemotherapy, but the terrible thing is that if this is a recurrence, it would still count as being part of the same early stage cancer, and the prognosis would be good – so long as I had the treatment. Again.

It would be stupid not to, right?

But after a year of feeling like a tortured lab rat, it’s almost impossible to contemplate the idea of going through all that again, including being properly mutilated this time.

You may be wondering what all this has got to do with Jennifer Saunders. A couple of months ago, in an interview with The Times to publicise her autobiography, Saunders took it upon herself to criticise fellow breast cancer sufferers for saying that you can never put the disease completely behind you.  These women liked the attention they got from having breast cancer, she said, wore the disease ‘like a badge’, and were probably sorry when their hair grew back; she herself always got lots of attention because of her career, and did not feel the need to hang on to her breast cancer as a way of getting attention. The doctors had told her she was not going to die of it, and she believed them; she had no more chance of getting breast cancer again than the average person.

Well, good luck with that, Jennifer.

Perhaps you have superhuman mental self-discipline, and never think about what might happen if the disease comes back, as it all too frequently does; cancer treatment is still not very effective. My chemotherapy treatment theoretically increased my chances of survival by about six per cent, but they still can’t distinguish in advance who will be helped by chemo and who won’t; similarly, Tamoxifen theoretically increases my survival chances by 8 or 9%, but there are some people who can’t metabolise Tamoxifen. Again, there is no way of telling if it is actually working.

My cancer is not’ cured’, and the chance of it coming back is very real. The treatments may have mopped up all the cancer cells, or they may not; you can never know, unless and until the cancer comes back. That’s why you are never free of breast cancer, Jennifer, and if you think you are, then you’re living in a fool’s paradise.

You don’t think about it all the time, though: just as all humans, even healthy ones, know they’re going to die sometime, but get through life by not thinking about it. During the last couple of months I was getting on with my life again, treatment over, and hardly thought about cancer at all, until two weeks ago.

Tomorrow I will find out if I have anything to worry about – or rather, anything out of the ordinary to worry about.  If the surgeon deems there is something to worry about, and they give me a biopsy, then the results will take another ten days.

Happy New Year.

Wednesday, July 3, 2013

The genius of cancer treatment is that it makes you WANT to die

General status update
Radiotherapy, day 47 

Fatigue/weakness: non-stop coughing makes you very, very tired. As does radiotherapy.

Nausea demon: ah, my lost love.

Anxiety level/insane euphoria (+/- 1-10,000): Unlike the Dexys, Prednisolone doesn’t engender euphoria – it just makes you PSYCHOTIC. See below.

Despair Demon: we’re thinking of entering into a civil partnership

Chemo Muse: telling me to stop whingeing and feeling sorry for myself and start doing something productive, which will make me feel better. I so hate it when she is right.

Chemo Brian: he says he has a contact who can get me some Dexys, no questions asked.

State of mind: inside my head, deep in the darkest recesses of my brain, I am curled up in the foetal position, whimpering.

Summer in north Yorkshire: buttercup meadow at BigSisFo's

The damage is done long before I have any awareness that I am acting strangely; that comes later, slowly, as I sit alone in a dark room surveying the wreckage.

So, when we last spoke I was in a bit of a bad way, wasn’t I?

I wrote the previous post on this blog 10 days ago in the middle of a truly dark night of the soul, tormented by the pain of extensive, suppurating radiation burns on my breast, wracked by the incessant coughing which may or not have been triggered by the effects of the radiation on my right lung, and essentially longing for death: desperately wanting it all just to STOP.

Which is why the Grim Reaper - alerted by the powerful bat squeaks of distress being emitted on that frequency into which only he can tune - had popped in around 3am and was sitting on the sofa with Chemo Brian, drinking R’s Laphroaig and playing endless hands of poker while I seriously considered ending it all. In the end he left shortly after dawn, disappointed, but telling Chemo Brian that he was sure he’d be back for a return match very soon.

That was a week ago on Saturday: a new personal low, after which things could only get better, surely?

Especially as I’d just been prescribed massive doses of steroids, in the form of Prednisolone, to shock my lungs back into good behaviour, and regular readers will remember that the single redeeming feature of the entire 134 day Chemo Nightmare was that Dexamethasone, the steroid they gave me for a few days at the beginning of each chemo cycle to alleviate the worst side effects of the chemo, made me feel fabulous: mentally energetic and delightfully elated or, as R described it: ‘flying’. Ah, happy days.

It takes five days for the Prednisolone to turn me psychotic.

Luckily for R, his presence was required in Geneva last week to chair a big conference on bioethics, so when I flip out, it isn’t directed at him. He offers to cancel, for which I love him even more, but I insist that he goes, thinking that he has more than done his duty over the last few weeks of My Radiotherapy Hell, and seriously needs a few days away amongst normal people doing normal things. It is unlucky, though, for BigSisFo, who has volunteered to look after me in north Yorkshire while R is away.

It’s always a joy to be at my sister’s house, especially now she's got rid of the rats: her 18th century farmhouse on the edge of the Howardian Hills has the most soothing atmosphere of any house I’ve ever known. I’ve always felt that it is a place of sanctuary, that nothing bad can happen to me there.

I was wrong about that.

The first two days chez BigSisFo are calm and uneventful; unusually my sister’s partner, the M.C., is working at home, which means a couple of spectacularly good dinners. On the first night there are fillets of brill with samphire on a bed of shallots and mushrooms -

(‘THAT is a Monday night kitchen supper?’ R texts indignantly from Geneva, where the food turns out to be rather less good than expected) - followed on Tuesday by the MC’s legendary truffle risotto (R: 'Next time YOU are going to the conference and I am going to your sister’s').

The coughing having moderated a little, I spend a lot of time asleep on the sofa, catching up after an almost sleepless weekend. Hank, the insane, humongous-balled Hungarian Vizla who rules the roost at BigSisFo’s, perceiving that I am unwell, not only brings me his favourite toy

but also elects to stay with me, keeping guard on the window seat as I doze on the sofa. 

Hank is normally the most exuberant of dogs, but when anyone is upset or ill he metamorphoses into Hank, District Nurse – it is a strange and lovely phenomenon.

The trouble starts on Wednesday, by which time the radiation burns are finally beginning to heal, and the coughing has become more manageable, but I am also feeling increasingly agitated and restless inside my head. My mind seems to be ricocheting around inside my skull, as if on some kind of cerebral squash court, my thoughts are coming faster and faster and I start to feel rather aggressive, and very cross indeed. About everything.

By the time we are eating BigSisFo’s home-made pesto and linguine (made at my special request) that evening, I am like a volcano ready to erupt (this I know in retrospect - at the time I was quite unaware that anything was really amiss). My sister starts talking about the harmful effects of religion on human societies and, although I actually agree with her to some extent, my now-fevered brain decides to conduct a brutal forensic analysis of her argument.

Filled with a kind of mad glee, and addressing her as if I am a barrister for the prosecution and she is a hostile witness for the defence, I cross examine my sister, tear her argument to shreds, and berate her for her ignorance of the Enlightenment and its intellectual legacy, and for failing to realise that the 20th Century saw many more millions killed in the name of rationalism and Godless political movements than had ever previously been killed in the name of religion.

My sister and the other people round the table – my aunt and her partner – sit there open-mouthed as I deliver this vicious diatribe with enormous relish and demented energy. What I say is broadly true, historically: the ferocity with which I intellectually mug my sister, however, is truly appalling behaviour. At the end I am conscious of having bull-dozed everyone into submission, but vaguely aware that I may have overdone things a bit. After the guests have left my sister looks at me, says ‘That was both unnecessary and very unkind, Caroline’ and stalks off to bed, leaving me alone in the kitchen, dimly beginning to perceive that I have done something very bad to my sister who loves me and has been looking after me, and that all is not quite right in my head.

It’s the steroids, stupid.

Confused and agitated, I go up to my room: over the next few hours, my mind racing faster and faster, unable to sleep, I become madder by the minute. My existence has become unbearable, I am a trial and a burden to my loved ones, and it is time to end it all or just run away somewhere no one can find me.

I consider the escape options, my mind jumping from one idea to another.

At one point I decide I will take Hank, go outside, and find a field to lie down in and wait for death. Then I realise it isn’t cold enough to die of exposure – even in north Yorkshire in June – and that I will only end up getting very damp. I consider running a hot bath and cutting my wrists, but it seems very bad manners to kill yourself in someone else’s bathroom and besides, I’ve upset my sister enough for one day.

In the end I decide I will wait until morning and then run away to Scotland, perhaps to the Orkneys; R and my family will be much better off without me. I will find a nice beach and just swim out to sea. Then I start imagining how crabs will feast on my bloated corpse, and go off that idea.

I finally get to sleep at around 5am, still making escape-and-self-destruction plans; when I wake up a few hours later, my brain still racing and my heart beating very fast, I rush downstairs to find BigSisFo in the kitchen and make a grovelling and virtually unintelligible apology:


‘I think perhaps in the first instance you need to sit down and have a nice cup of tea’ says my sister.

In the end (BigSisFo having accepted my explanation of my uncharacteristically vicious behaviour and forgiven me) we decide that I need to stop taking the Prednisolone – of which aggression, suicidal ideation and general mental disturbance are not uncommon side effects – as a matter of urgency, because its effects on me are frankly frightening. I remember other people amongst my chemo buddies having similar experiences with the Dexamethasone, and having to stop taking it, sharpish. As with all these drugs, response varies widely between individuals and depends on your genetic make-up: I was lucky with the Dexamethasone, which made me feel just fine, but the Prednisolone quickly became a waking nightmare.

By the time I reurn to London on Friday, I am reasonably sane again, although still fairly wired. The coughing continues, though, over the weekend and has worsened  over the last couple of days, so I have been forced to start taking the steroids again, although I have halved the dose in the interests of retaining my sanity. Some research in the medical literature has shown that it is possible to substitute Dexamethasone for Prednisolone in acute asthma exacerbations, so this may be the way forward if it doesn’t get better by Friday, when I am due to see my GP. I’d rather not go back to the hospital unless it becomes a dire emergency again.

I'm just so tired of all this now.

And the final insult: we missed the Bruce Springsteen concert at the Olympic Park on Sunday – for which R bought the tickets months ago as a post-chemo treat, because I would obviously be fighting fit again by the end of June - because I just wasn’t well enough to go….

Sunday, June 23, 2013

The Grim Reaper pops in for a nightcap

General status update
Radiotherapy, day 39 – come back chemo, all is forgiven! 

Lungs: looking likely to get me before the cancer does, right now.

Radiation burns: slowly starting to heal after two weeks of hell.

Nausea demon: Oh god, I miss him – I miss him SO much. Nausea schmausea: at least he didn’t burn me or make me cough uncontrollably for days on end. And he was very sweet-natured, really.

Anxiety level/insane euphoria (+/- 1-10,000): someone give me some more Dexys – PLEASE. Even if it does turn me into an American football player – I DON’T CARE. Prednisone is good for my lungs but it DOESN’T MAKE ME HAPPY.

Despair Demon: he’s been trying to make our liaison permanent. Fighting him off as best as I can in my severely weakened physical and psychological condition.

Chemo Muse: telling me firmly that the only way now is UP – through reapplication to writing, since swimming is off the agenda until the burns have all healed and my lungs have recovered.

Chemo Brian: looking rather anxious, frankly.

State of mind: calm, resigned to my fate. Ready for whatever comes next. Hopefully just breakfast, but this IS the darkest hour before the dawn.

It’s 4am, and the Grim Reaper is sitting on the sofa with Chemo Brian, drinking the last of R’s Laphroaig. Sorry, R.

I’m lying here listening to the increasingly alarming noises in my lungs – always my weakest point, cancer treatments always get you at your weakest point – and contemplating the Three Last Things which, in my case, are likely to be a glass of Armagnac, a can of ice cold diet Coke, and a packet of Maltesers.

It’s been a bugger of a week, beginning with the continuing torment of the radiation burns, which has been so bad that at first I didn’t really notice the coughing.

Until I was coughing so much, that is, that I was choking and we had to go the A & E, where I was admitted and put on a nebuliser to pump steroids into my lungs. That was Friday morning, and I spent the day in hospital being treated before being released back into the wild clutching a big party bag of more steroids. The oncologists are divided as to whether this is a condition caused by the radiotherapy - radiation pneumonitis – or simply an asthma exacerbation in my generally weakened, immune-suppressed state, but it doesn’t really matter what the cause is, as the treatment is the same in either case: my lungs are severely inflamed and require massive doses of steroids to try and calm it all down before my airways close up entirely and I cough myself to death. 


The other danger is if it wakes up some dormant bacteria and develops into pneumonia.

I spent the whole of Friday night awake and still coughing, so the treatment didn’t seem to be working, but during the course of Saturday the coughing became slightly less incessant. Now, though, at 4.30 am on Sunday morning, my lungs seem to be talking amongst themselves, and they are NOT HAPPY. I’m not coughing quite so much, but from inside my chest are coming crackling, hissing, wheezing sounds, the like of which I haven’t heard since I was in hospital in Ankara with pneumonia five years ago, an episode which nearly killed me.

Pneumonia is the patient’s friend, you know – it’s not an unpleasant way to go. And five years ago I was quite ready to go gently into that good night, having been on my own for a very, very long time after the death of my former husband (from a chemo-related lung infection – spooky, huh?). At that point I was very tired, quite loosely tethered to the world, and perfectly prepared to give up without a fight, but the Grim Reaper had an appointment in Samara with someone else that night, and passed me by. 

It’s different now, of course: there is R, who surrounds me with love, and I have so much to live for.

I suppose I’d better make a bit of an effort.

ps: remember, my current condition is NOT caused by the cancer - it's caused by the frigging treatment.

Tuesday, June 18, 2013

Nuclear half-life

General status update
Radiotherapy, day 29 

Radiation burn: getting worse before it gets better.

Nausea demon: he brought me a bunch of tulips the other day – he doesn’t like seeing me suffering like this. We talked nostalgically of all those dawn breakfasts together during chemo, when I was at least able to sit up.

Radiation demon: this is light duty for him, as he’s only torturing one breast rather than the whole body, so he’s got plenty of time to do Sudoku as well.

Anxiety level/insane euphoria (+/- 1-10,000): I would give anything for a few Dexys and a big surge of unnatural chemical exuberance right now, but unfortunately they don’t prescribe steroids for radiation burns.

Despair Demon: has set up camp in the airing cupboard once again, and keeps reminding me that this is my punishment for regarding radiotherapy as a mere formality after chemo. I wish he’d just sod off back to the Infernal Regions and leave me alone.

Chemo Muse: itching to get back to her new role as my swimming coach, and currently filling in the time by reading Ian Thorpe’s autobiography. She says I’m never going to be a champion swimmer because my feet just aren’t big enough.

Chemo Brian: very understanding about me spending so much time lying on the bed at the moment, rather than joining him in my usual position on the sofa.

State of mind: low – have to keep reminding myself that all this unpleasantness derives from the treatment, not the illness, and that soon it will be over. And then I can start taking the frigging Tamoxifen.

Legend relates that St. Lawrence, depicted above in a painting which may or may not be by Caravaggio, was martyred by being tied on top of an iron grill over a slow fire that roasted his flesh little by little.

I’m beginning to know exactly how he felt.

Since the final dose of radiation, a week ago, I have continued to burn, and the pain and discomfort on, under and around my breast has increased. It is red and raw and acutely painful, and as the layers of skin burn off I feel as if I am being very slowly flayed alive.

 This is a situation in which having a D cup breast is a distinct disadvantage, since the weight of the breast exacerbates the problem. The only way I can be comfortable is to lie down, breast bared, back slightly arched, with my arm extended above and behind my head on the bed at full stretch.

This improves things a great deal, and is said to be the best way to help the breast to heal, but it considerably limits my range of other activities. Aloe vera gel helps to cool and soothe it, but the breast will continue to burn for another week, apparently, as the radiation continues to work for two weeks after the treatment has finished. Only then will it begin to heal, and there is nothing else that can be done, so for now I must simply be patient and lie on the bed in the backstroke position, the swimming pool once again a distant dream.

I thought I had my life back, but I was wrong.

Tuesday, June 11, 2013

Going for the burn

General status update
Radiotherapy, day 15 

Radiation burn: nasty, painful and Very Red.

Fatigue/weakness: considerable, but different to chemo fatigue in a way I can’t quite describe.

.Anxiety level/insane euphoria (+/- 1-10,000): ratcheting up again, because after the radiotherapy comes Tamoxifen, the wonder drug with accompanying wondrous side effects. Allegedly.

Despair Demon: has made a sudden reappearance as I approach the end of radiotherapy treatment, mystifyingly.

Chemo Muse: she’s very happy that I’ve started writing again

Chemo Brian: he politely averts his eyes when I lie on the sofa topless to let the air soothe my irradiated breast

Nausea demon: having a whale of a time working for the Russian oligarch’s wife in Knightsbridge, but still comes round for a cup of tea from time to time. Says he is there if I need him once I start taking the Tamoxifen. He sends his love to you all.

State of mind: weary, very weary

I wake up this morning weeping, in pain because my nightie has adhered to the radiotherapy burns under my breast; pulling it off hurts like … well, you can imagine. I continue weeping at the hospital, while I am being nuked for the last time, then at the café where I go afterwards to have a cup of coffee and regroup, and then at the bank.

After that I give up and go home.

Yes, we’re back to the old routine: early morning unpleasantness and existential despair. My post-chemo trip to the Aegean was lovely, thank you, but it now seems a very long time ago. The morning after I got back from Ayvalik – Tuesday 21st May - I was straight back to the hospital to start my radiotherapy treatment, consisting of 15 daily doses over 3 weeks.

The expression always used about radiotherapy is that after chemo it is ‘a walk in the park’, and that is broadly true: nothing can compare to the up-front, in your face horror of chemo. Radiotherapy, however, is nasty in its own way, and that nastiness sneaks up on you all of a sudden after the radiation has been working away quietly in your body for a couple of weeks: it’s what can very accurately be described as a slow burn.

The treatment itself is not at all unpleasant: before it starts there is a ‘radiotherapy planning meeting’, during which they put you in a big scanner, take lots of measurements to ensure you will be nuked in precisely the right spot, and put a couple of tiny, permanent tattoos on the breast. Then when you come for treatment every day the tattoos help them guide you into the right position under the radiotherapy machine. The radiation itself is entirely painless and lasts for only a few minutes: most of the time at each appointment is spent lying on the table whilst the radiologists make minute adjustments to your position: the whole process is reassuringly precise down to the last millimetre.

In case you’re wondering why I have to have radiotherapy after I’ve already had chemo, it is because the two treatments target different things: the chemo is a systemic treatment, to mop up any stray circulating tumour cells which might have escaped into my bloodstream, while the radiotherapy is a local treatment just on my right breast, to kill any cancer cells that might remain elsewhere in the breast tissue after the surgery to remove the tumour. You can’t have a lumpectomy and keep your breast without having radiotherapy: otherwise there would be a very high risk of the cancer recurring within the breast.

The main side effects of radiotherapy are what medics call ‘skin reaction’ and I call ‘burning’, and fatigue, both of which develop gradually as the radiation builds up in your system. The side effects peak two weeks after the last dose of radiation: you keep on cooking inside for some time after the treatment has finished.

I start to burn on day 10.

That evening, giving my breast its daily inspection in the bathroom mirror, I notice that the skin is turning red on its underside, close to the crease where the breast meets the rib-cage.  I have been applying aloe vera gel several times a day to protect the skin, on the advice of a friend who had recently done so and managed to get through her radiotherapy without burning, and am hoping for a similar result. I have also been spending a lot of time lying around topless, as air on the irradiated skin is meant to help. Over the next few days, however, the skin becomes redder and begins to feel very sore.

By Friday, day 13, it is quite painful and seems to be starting to blister, and I want a professional to take a look at it.  My cyber cancer buddies at other hospitals have been given assistance once their skin broke down, so I ask to see the radiotherapy nurse, who takes a look at my breast and then, essentially, tells me to stop wasting her time.

‘There is no MAGIC CREAM’ she says, with a certain amount of scorn in her voice, the words ‘you idiot’ hanging unspoken in the air. ‘Just keep on doing what you’re doing, and see how it is after the weekend.’

During the weekend the fatigue starts to set in as well, not helped by being unable to sleep very well because of the pain from the burn, and the difficulty of finding a comfortable position to lie in. Emotionally, I start to fray at the edges: three weeks of going to the hospital every day for treatment has taken its toll, and I can’t get very excited about my treatment finishing on Tuesday, because I know the radiation goes on working after the treatment is finished and that the burning may get worse: I imagine my breast turning into a horrible festering mass as I continue to burn.

Bu Tuesday morning I’m starting to melt down: it has been nine months of applied horribleness, with the hideous shock of diagnosis followed by surgery, chemotherapy and now radiotherapy: slashing, poisoning and burning. The assault on the body is constant, and it does horrible things to the mind. I’m just so very tired of it all now.

At the hospital, I lie down on the table for the final dose of radiation, and pull down the hospital gown to expose my breast. A trainee radiologist is in charge of putting me into position, and her supervisor tut-tuts, saying ‘Be careful! Look how sore the breast is’ and then to me ‘I think you should see the nurse afterwards to help you with that.’

‘I saw the nurse on Friday’ I say ‘and she told me to bugger off, more or less.’
‘We’ll find you another nurse, then,’ says the radiologist. ‘Your skin really needs looking at.’

Finally I am in exactly the right position; the radiologists all leave the room, the machine begins to click and whirr around my breast for the last time, and I start to cry, undone by the kindness of the radiologist. Tears stream down my face but I can’t lift my hand to brush them away: radiotherapy treatment is all about not moving one iota. Today’s soundtrack is vintage Motown, and as Marvin Gaye sings ‘I heard it through the grapevine’ I try desperately to stop my chest heaving as I cry, in case this makes the radiation go to the wrong place.

The radiologists come back in, and I am allowed to move again. As I sit up, clutching the hospital gown to my bosom, one of them says ‘Congratulations, Caroline, you’ve finished your treatm…..’ her voice trails off as she sees that I am in tears.

One of the radiologists hugs and comforts me, and another says ‘No! You should be HAPPY – you’ve finished all your treatment.’

‘I’m sorry’ I say ‘It’s just that it’s all been a bit much. Nine months of treatment. I am happy really – really I am.’

Somehow, I end up seeing the same nurse, and am tempted simply to leave, but my breast hurts too much. This time she is marginally more pleasant, concedes that the skin has now broken, cleans the wound and puts on a dressing.

I ask how long I should keep the dressing on.

‘That depends on how much it oozes’ she replies, and gives me a pile of dressings to take home.

Afterwards I walk up the Fulham Palace Road into Hammersmith to do some errands, but the tears continue to flow, so I give up and go home.

Treatment is over.


Monday, April 22, 2013

In swimming goggles, no one can see you cry

Day 134 
General status update
FEC cycle 6, day 19

State of mind: I went swimming today, so …’ecstatic’ pretty much sums it up

Anxiety level/insane euphoria (+/- 1-10,000): today I have the insane euphoria WITHOUT the Dexys – how good is that?

Fatigue/weakness: tired after the swimming, but in a good way. That makes a nice change.

Nausea demon: he LOVED his surprise party last night, especially the Pimms and home-made macarons (salted caramel and rhubarb flavours, to die for, thank you again Christina and Jecca, my Scottish macaron-making friends). Pimms was a new experience for him and I explained that it is a particularly English drink, and will probably not be available at his next gig chez the Russian oligarch. I told him he is welcome to pop round here for a glass; we will always be glad to see him so long as he is OFF DUTY.

Despair Demon: he’s fading round the edges, starting to look a little insubstantial. He’ll be hanging on in there for another couple of days in case the tooth extraction works out badly, but he knows he’s on the way out now.

Chemo Muse: we had an EXCELLENT time at the pool today, although the other swimmers must have wondered who I was talking to. Probably just as well they couldn’t see her jumping up and down by the side of the pool with that head full of snakes writhing about, though. I wonder if she’s ever considered having a perm? Can you perm a cranially-attached viper? She has them highlighted, but I think that might just be paint.

Chemo Brian: we had an EXCELLENT nap on the sofa together after I came back tired out after the swimming.

I’m not a great one for war movies, but there’s one I saw as a child that always comes to mind when thinking about endurance and delayed gratification: it’s called ‘Ice Cold In Alex.’  Set in north Africa during the Western Desert Campaign of World War II, it stars John Mills as Captain Anson, a transport pool officer leading the crew of an Austin K2 ambulance as they drive across the desert back to British lines, whilst trying to avoid the troops of Rommel’s Afrika Korps. Anson motivates himself by thinking of the ice cold lager he will order when they finally reach the safety of Alexandria - the 'Alex' of the title.  When they finally get there, that glass of Carlsberg is the best thing he has ever drunk in his life.

‘Going for a Swim at the Charing Cross Sports Club’ isn’t quite as snappy as ‘Ice Cold In Alex,’ but the mental process has been pretty much the same for me as for the tired soldier negotiating all sorts of obstacles and dangers in the heat of the desert (the film was based on a true story): you get through what you have to get through by keeping your head down and motoring on, but one of the things that helps you keep going is that image in your head of what it’s going to be like when the nightmare ends and you can just STOP, and then do whatever will make you feel better.

My ‘ice cold beer in Alex’ equivalent was thinking of the moment when I could get back in the swimming pool, push off and glide freely through the cool silky water, feel my arms and legs moving properly again and re-inhabit my physical self in a way to do with health and pleasure, not ill-health and pain.

That moment came this morning and after swimming a few lengths I had to stop for a minute, not because I was too weak to continue, but because I was crying and my swimming goggles were misting up from the inside.

I’ve cried a hell of a lot during the last eight months - which have featured an abundance of very bad news, pain, unpleasant and invasive medical procedures, fear and despair – but today I was crying tears of happiness, knowing that the worst of the cancer treatment is now over, and that I am free to swim and get strong again.

Cancer no longer owns me, and I’m starting to reclaim my life, and my self.

Once my goggles were demisted I got my head down again and went on to swim 22 lengths in all, which is 550 metres - not bad for the first time back in the water. I didn’t overdo it; I just kept swimming, slowly, until I started to feel a bit weak. It’s left me very tired, but it’s a healthy tiredness, the tiredness of physical effort. It’ll be a while before I’m back to swimming 2 miles at a time again, but it’s a good start.

And now I’m going to sign off for the time being: tired but happy, getting stronger both mentally and physically every day, and looking forward to the future again. 

I’d like to thank all the staff at the Charing Cross Hospital for their dedication and patience in treating a very reluctant and sometimes less than compliant patient, and in particular the wonderful Rebecca Johl – aka Matron Becky/World Mum/Mother Goddess/PICC line Wrangler Supreme – Matron of the Chemo Day Ward on 6 East, who transformed my chemo experience for the better once she became involved in my care. Becky, I am eternally grateful. You will get your reward in heaven, but in the mean time I will fulfil my promise to bake cakes for the chemo ward in due course.

My partner, R, has suffered along with me during chemo in a very real sense, as will be evident to anyone reading the blog. He, too, is physically and emotionally exhausted, and has done so much to look after me – whilst also juggling a full time job and other family responsibilities - with very little support coming his way, as often happens to carers. Now it’s my turn to look after him, and I will. Thank you, R. You are the best of men.

My family – particularly MamaFo and BigSisFo – have been mercilessly mocked on the blog throughout but are still talking to me, and were a huge support in every way, as were my stepfather and stepsisters (and my other sister whom I am not allowed to mention on the blog). Thank you all.

Many friends have been incredibly generous in finding ways to cheer me up with visits, outings, and lovely presents, which I’m sure I didn’t deserve, but enjoyed hugely nevertheless: thank you Clare Paterson, Gill Carrick, Kirstie Hepburn, Andrea Gillies, Emma Beddington, Fiona Laird, Henri Hunter, Lynette Szczepanik, @Madame Nottingham, Christina and Jecca Maxwell, and Sasha Wilkins (aka  Liberty London Girl  fashion, food and dog blogger supreme). I’ve a horrible feeling I’ve missed someone out, and if so you are fully entitled to come round and berate me. 

My Ayvalik friends have been cheering me on with emails and lots of photos to remind me of what I'll be seeing again soon in the Aegean - thank you Dor, Tara and Bridget, and also Jed in the UAE.  I will see you all very soon at the Camel Barn. 

My American friends Jen Fishler, Glenn Pence and Janet Paraschos have all been regular, very cheering commenters on the blog, something which was much appreciated.

Finally, a very big thank you to all of you have been reading the blog – old friends and new, real life and virtual, Twitter and Facebook, fellow cancer and chemo patients, medics and bioethicists -  for keeping me company on what has been a rather gruelling ride, for sponsoring my chemo and, most of all, for sending me so many messages of support all the way through, via so many different media – every one of which helped me to keep going with the chemo when I wanted to give up which, if I’m honest, was pretty much all of the time. You helped me get there, and I am extremely grateful for that. 

Thank you, all of you - I'm a very lucky woman  xx

And I really can't finish this post without a final blast from here you go:

Sunday, April 21, 2013

Moving on

Day 133 

General status update
FEC cycle 6, day 18 

Fatigue/weakness: it’s all a bit random now – I’m getting stronger, but there are still days of being completely wiped out.

Nausea demon: completely oblivious to his surprise leaving party preparations, because he’s spent the whole day with headphones on, chanting tables of Russian irregular verbs. Which, it turns out, are very pretty:
жаждать: жажду, жаждешь,жаждут
стонать: стону, стонешь
жаждать: жажду, жаждешь,жаждут
дремать: дремлю, дремлешь, дремлют

Despair Demon: looking depressed – his job is going to be so much harder once I’m out of the house and exercising properly again.

Chemo Muse: she has track suit, whistle, a peaked cap and trainers that glow in the dark – so, all set to go as my new swimming coach tomorrow.

Chemo Brian: since he is intent upon accompanying me to Ayvalik, we’re going to have sit down and have a serious talk about Turkish drug laws.

State of mind: We’re all going to the pool tomorrow, pool tomorrow, pool tomorrow...

When you’re first diagnosed with cancer it is unreal: you think they must have made a mistake, that this is a bad dream from which you will soon wake up, and then everything will go back to normal. That phase finishes – at least it did in my case – once the treatment begins, and they start performing unpleasant, invasive and sometimes painful procedures on you, after which there is no more possibility of denial. For me, that was on October 3rd last year, the day before my lumpectomy operation, when they injected radioactive dye into the nipple of my right breast without any anaesthetic; I still flinch every time I remember both the pain and the way the shock of it blew away my denial, forcing me to face up to the fact that the cancer was real, and there was no escaping from the many months of treatment to come.

At that point the enormous psychological and physical impact of the cancer and its treatment becomes, if not your whole reality, then the overwhelmingly dominant feature of it: I have often thought that being diagnosed with, and undergoing treatment for, cancer is like undergoing a strange kind of assault course, in which you are what is being assaulted, mentally and physically, for an extended period of time. Chemotherapy treatment in particular is an 18 week toxic endurance test which ravages both body and mind, and more or less puts you under house arrest with its combination of crippling fatigue and the very real danger from acquiring any kind of infection in your immuno-suppressed state.

Writing this blog is what has saved me from going completely demented during the last 18 weeks of chemotherapy treatment: I started it the day before the first dose of FEC, at which time I was still deeply reluctant to have chemo, and fairly crazed with anxiety about what was going to happen to me, and have published a post on the blog every single day since, without fail, although some posts made in extremis were fairly brief.

The posts averaged about 1000 words a day, though, and total word count is now around 140,000 words, which is half as long again as my DPhil thesis, which took several years to write, not 18 weeks – this Stakhanovite work rate can only be attributed, I think,  to the extraordinary mental energy and focus that the Dexamethasone steroids gave me. I can’t find any other explanation for it.

There was a fair amount of medical drama going on throughout the chemotherapy treatment, as well as the day to day torment of the side effects, so I was never short of things to write about, and the daily discipline of putting it all into a coherent narrative, and meeting my self-imposed midnight deadline, gave me a task to do, and a sense of purpose, and prevented me from spending too much time lying on the sofa feeling sorry for myself and sobbing over the Pity Of It All.

Many people have told me that reading the blog has proved helpful to them, which makes me very happy; in addition, the ‘Sponsor My Chemo’ drive has now raised £1,500 for The Haven Breast Cancer Support Centres, which I’m also extremely pleased about.

To be honest, though, I started the blog for entirely selfish reasons, to try and make bearable something which I not only perceived to be unbearable, but had spent twenty years swearing I would NEVER do, after the death of my former husband from a chemo-related infection. Never say never – look where it got me.  

And it worked brilliantly for that particular purpose: writing the blog every day became my project, my homework, the thing which enabled me to distance myself from what I was going through. I couldn’t get away from the cancer and the chemo, but writing about it somehow enabled me to remove myself from it, for some of the time. I had an extremely bad time, physically, during the chemotherapy, including some unfortunate occurrences at the hospital, but writing about it made it mentally bearable, more or less. 

Now, though, I am in the last week of the last chemo cycle and as FEC finally lets me go, it’s time for me to let go of the daily writing of the blog. Its job is done, and I’m tired of the daily deadline. There is more treatment ahead – 3 weeks of radiotherapy in May/June, and then 5 years of taking the hormonal drug Tamoxifen – but with the end of chemo and my release from its chemical prison, the cancer and its treatment will no longer be playing such a dominant role in my life. I need to leave it behind now, and get on with my life again.

There’s going to be a period of convalescence –it takes 4 to 6 weeks for the chemotherapy drugs to leave your body, although the fatigue can last for months, and the radiotherapy treatment will cause more fatigue – but I hope to be properly physically fit again by the end of the summer. I was told breast cancer takes a year out of your life, and so it has proved.

Tomorrow, when I plan to get back into the swimming pool again for the first time since the chemo started, will be a hugely symbolic day for me: I will be moving on, both physically and mentally, free at last from the chemical prison, and that also seems the right time to make my final daily post on the blog. I will keep the blog going, and continue to post on an occasional basis, but the unbroken narrative of Chemo Nights will end tomorrow, on Day 134.

It’s time to move on…