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 Bruce...so here you go:

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 3^rd 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…

Goodbye to all that

Day 132 

General status update

FEC cycle 6, day 17

Nausea demon: We’re giving him a surprise farewell party tomorrow night, as he starts his new job in Knightsbridge providing Pregnancy Nausea Services to the wife of a Russian oligarch on Monday. He’s spending most of his time in his room now, doing an online Russian course – he’s getting tutorials via Skype from a woman in Smolensk.

Anxiety level/insane euphoria (+/- 1-10,000): wondering if I could persuade them to give me some Dexys with the radiotherapy treatment as well, but thinking that it’s unlikely.

Despair Demon: he’s not going anywhere, of course.

Chemo Muse: busy reading manuals on swimming coaching in preparation for our new project, also starting on Monday. She’s also bought a whistle, which is worrying.

Chemo Brian: currently absorbed in reading about the history of Ayvalik, and trying to get his head round the Greek-Turkish Population Exchange of 1922 – ‘This is HEAVY, man’ – Yes. It was.

Fatigue/weakness: the really interesting question is how far I will be able to swim on Monday, when I get back in the pool for the first time. I used to do 128 lengths (2 miles). No idea what to aim for on Monday. Maybe ‘aiming’ for anything is not a good plan: I’ll just get in the water and see what happens.

State of mind: slowly adjusting to this strange new post-chemo world, as the final cycle draws to an end.

During two weeks out of three, during chemo, the routine was the same most mornings: after being woken at somewhere between 4 and 6 a.m. by nausea, I would get out of bed quietly, so as not to wake R, walk to the other end of the flat and sit down at the dining table to take all my meds: the Ondansetron, Cyclizine and Domperidone for the nausea, the Omeprazole for the stomach pains, the Dexamethasone for everything, and sometimes the Lorazepam for

the anxiety and dread. 

The Lorazepam was especially useful on the days when the next dose of chemotherapy drugs was scheduled, to take the edge off the fear and loathing as we walked down the Fulham Palace Road towards Ward 6 East at Charing Cross Hospital, where the latest infusions of the FEC drugs – Fluorouracil, Epirubicin and Cyclophosphamide – were waiting for me in their yellow plastic HAZCHEM bags.

All the boxes of medication were kept piled up on the window sill next to the dining table;  I would line them up on the table each morning and take the prescribed dose of each one, washed down with pomegranate juice in a probably futile gesture towards putting something health-giving into my body at the same time as I was ingesting all these drugs to deal with side effects of the toxic FEC trio. This was followed by tea and toast, because you have to take the drugs with food, and the chemo and the Dexys made my body want CARBS.

That was then: this morning I woke at 8, untroubled by nausea, and as I sat at the table a little later it occurred to me that it was time for the drugs to go.

I don’t have to take them anymore.

I gathered up all the packets of pills and put them away in the bathroom cupboard, and the window sill is empty now, except for a small wooden penguin. It’s possible I might need some of them again – radiotherapy treatment can also cause nausea, although probably not on the epic scale of FEC – especially the Omeprazole, because the damage the FEC has done to my stomach may take some time to settle down.

Still, my early morning rendezvous with the Nausea Demon and a heap of pills are now over.

I don’t have to do that anymore; IT’S FINISHED.

Slowly, day by day, FEC is at last starting to let me go, and I'm finally starting to believe that there is life after chemo.

You‘ll believe a cat can swim…

Day 130 

General status update

FEC cycle 6, day 16 

Fatigue/weakness: Am trying to get out and walk a bit every day; after every outing, I’m still completely exhausted. It looks as if building up my strength again is going to be a rather slow process.

Nausea demon: I stopped taking the tablets, and he reasserted himself. It’s TWO WEEKS since the final dose of FEC. This is unsporting, and ungentlemanly, and I told him so.

Anxiety level/insane euphoria (+/- 1-10,000): I’ve just remembered that I’m going to have my semi-root-canalled tooth extracted next Wednesday, which is starting to make me very anxious indeed. I truly feel as if my body has taken enough punishment for now, but I don’t think I dare delay it. Oh, God.

Despair Demon: he’s focusing on the whole tooth extraction issue now – needles, injections, pain, possibility of infection – there’s plenty to play for.

Chemo Muse: I shouldn’t overdo the resting, in her opinion, as the Devil makes work for idle hands and the Despair Demon IS Satan’s ranking representative here in my chemo- and drug-addled mind, after all. Yes. Good point.

Chemo Brian: he’s happily occupied reading guidebooks to the north Aegean at the moment.

State of mind: moving on, thinking ahead – forgetting about chemo, thinking about my cat.

Before I moved to Turkey in 2006 I lived in Oxfordshire, and had the best, most euphonic, address in the world - Cricket Cottage, Church Lane, Charlbury. It was just as lovely as it sounds: an old cottage made of honey-coloured stone, 200 yards from the church, and overlooking the cricket pitch down at the bottom of the hill, on the other side of the River Evenlode.

One day someone knocked on the door and, as I went to open it, my cat Ollie performed his party trick, which was to take a flying leap at me from behind, and land on my right shoulder; this was rather startling when he first began doing it, but I soon learned to recognise the little squeak he emitted just before landing, and could now withstand a flying feline scapular landing a tergo without breaking stride, which was why I answered the door to the man from Thames Water with Ollie perched, parrot-like, on my shoulder.

Just why the man from Thames Water was calling is lost in the mists of time, but his main point of interest turned out to be Ollie, anyway.

‘That’s a beautiful cat’ he said ‘It’s a Turkish Van, isn’t it?’

‘I’ve absolutely no idea’ I replied. ‘The vet gave him to me a few weeks ago; he was a stray in need of a home. What’s a Turkish Van?’

When the vet rather forcefully rehomed Ollie with me, he hadn’t been beautiful at all: he was scrawny and sad and howled a lot, and all his fur had been chopped off because it had got matted while he was a stray. It was some weeks before the fur grew back and he metamorphosed into an extraordinarily beautiful creature with long, silky white fur and a sweeping auburn fox brush of a tail.

‘Turkish Vans are swimming cats’ he said. ‘They’re pedigree cats, and they like to swim.’

I laughed, as he was clearly having me on.

‘What do you mean, ‘swimming cats’? Cats hate water. Everyone knows that.’

‘Turkish Vans love the water. They come from Lake Van in Turkey, and they swim using their tails as rudders. I’m not joking. Look it up. And your cat is definitely a Turkish Van.’

Later, I looked it up, and he was right. Turkish Vans do swim, and Ollie was very definitely a Turkish Van – he looked exactly like the one in the photo used to illustrate the breed.

And the reason that I’m telling you this story is because yesterday someone posted on Facebook this wonderful photograph of a Turkish Van going for a swim, and pretending to be a Retriever -

- which reminded me that Ollie still hasn’t been for a proper swim, 16 years later. He did get into the bath and splash about one day, when there were just a couple of inches of water in there, but I never got round to taking him down to the river for a dip; there were always people walking their dogs down there,  and it might have been a bit stressful for him.

When I first went to live in Turkey in 2006, to teach at a university in Ankara, I left Ollie behind for the time being, in the hands of a house-sitter, as I didn’t know how things would go. A year later, it was clear that I was going to be in Turkey for some time, and I persuaded the long-suffering BigSisFo to bring Ollie out to join me in Turkey, his ancestral home.

It is a thousand times easier, and cheaper, to export a person than a cat, and the difficulty of organising the vaccinations and permissions and inspections and certifications defied belief, but eventually BigSisFo and Ollie arrived at Istanbul airport (cats couldn’t be flown into Ankara, of course, so I had to hire a guy with a minibus to drive me halfway across Turkey to collect them).

BigSisFo was clutching a big fat folder of Ollie-related documentation, and it is entirely characteristic of the Turkish approach to customs and excise that she was able to walk through the ‘Nothing To Declare’ channel – by mistake – pushing a trolley loaded down with a great big cat carrier plastered with labels saying ‘LIVESTOCK’, without being stopped and asked to show a single one of those hard-won certificates.

Ollie adapted well to living in a first floor faculty flat in Ankara, but when two years later we moved to the Aegean and the Camel Barn, he was happier still: not only do the house and barn offer a great deal of space, but there is a sunny courtyard with an olive tree which serves both as scratching post and means of access to a sunny balcony and the roof terrace, the sunniest place of all. The place is also protected by high stone walls, which makes it difficult for the nasty street cats to get in and bother him, so Ollie is king of all he surveys.

After we’d been there for about a year, I remembered the whole swimming thing, and had a brilliant idea: it was July, and exceedingly hot, so why not provide Ollie with his own little swimming pool in the courtyard, and see what happened?

I went off to the hypermarket to see what I could find, and this is what I came up with:

Pretty nifty, no? And a little diving-board for him, and everything.

Would Ollie go in it?

Would he b***ery.

You can lead a cat to water, but you can’t make him dip a paw in it, much less jump in. Maybe he was too old – this was four years ago, but he’s 18 now, so he was pretty ancient for a cat, even then. Or perhaps Turkish Van cats have to learn how to swim as kittens – who knows.

After seeing that photo of the swimming cat yesterday, though, I think we might get out the paddling pool and give it another go on the upcoming trip to Ayvalik.

Very gently.

Ollie is very, very old now, although he’s still fit enough to climb the olive tree every day to go and lie in the sun. Bridget, who’s looking after him, says he’s getting thinner and more fragile, although he’s still eating, and healthy. He’s one of the main reasons I’m making this trip to Ayvalik, and delaying my radiotherapy treatment so to do. I haven’t seen him for a year, and I miss him so, and if I don’t go now it might just be too late ever to sit on the balcony with him in my lap again.  

Ollie’s too old to bring back to the UK and endure quarantine, and he’s very, very happy where he is, so I have learned to live without him (and I've got R now, obvs, although he's WAY too big to sit in my lap).  But I’m going to get spend a couple of weeks with him now, possibly for the last time, his warm weight in my lap every day as I read and he snoozes, in the dappled shade of the olive tree, or on the balcony, or high up on the roof terrace beneath the heat of  the Aegean sun.

                               And here is Ollie keeping R company as he reads, on our last trip to the Camel Barn

Pause for breath…

Day 130 

General status update

FEC cycle 6, day 15

Fatigue/weakness: I’m getting a little bit stronger every day, but an essential expedition to the Passport Office in Victoria today to get my passport renewed in time for the Ayvalik trip left me wiped out, and too tired to finish the blog post I was writing for today… so the blog is on pause until tomorrow, but here’s something beautiful to look at instead:

                        This is a celebrated view over the Ayvalik archipelago and the Aegean from a hill near Ayvalik

                                                   called Şeytan Sofrası, or 'The Devil's Dining-table

It ain’t over till the fat lady swims…

Day 129 

General status update

FEC cycle 6, day 14

Fatigue/weakness: getting a little stronger every day, and I hope to be back in the swimming pool on Monday. Just 5 days to go.

Nausea demon: getting demob happy.

Despair Demon: every time I catch sight of myself in the mirror he hisses ‘look at you – you’re SPHERICAL’

Chemo Muse: she can’t wait for me to get back in the pool again, as she rather fancies herself as a swimming coach.

Chemo Brian: he abhors all forms of exercise, except exotic horticulture and baking enhanced brownies; it’s just occurred to me how well he would get on with my mother.

State of mind: resolved on pursuing the Path of Righteousness asap (see below)

Last summer, before my cancer was diagnosed, I was swimming about 5 miles a week and possessed, in addition to quite sensational triceps, a clearly discernible waist; over the last eight months of cancer treatment this has been replaced by what can only be described as a circumference.

Thus, very visibly, has my lifelong delusion that ‘cancer makes you thin’ been dispelled. Weight loss only happens, apparently, if you get to the terminal stage; treatment for early stage cancer, and in particular breast cancer, has quite the opposite effect, adding the third element to the Breast Cancer ‘hey, let’s TOTALLY destroy this woman’s self-esteem as well as trying to kill her’ Trifecta:

1) mutilation

2) baldness from the chemo

3) significant weight gain

My oncologist warned me before the chemo started that I would probably put on a stone during the treatment, and she was right. No one seems quite clear why it happens, but the weight gain is probably a multi-factorial phenomenon, with various contributing causes, including:

1) carbohydrate cravings caused by the chemotherapy drugs (or as the nutritionist at the Haven put it ‘chemo makes you crave JUNK’);

2) general increase in appetite caused by the steroids they give you to ease the side effects of the chemo;

3) metabolic changes caused by the chemo drugs increasing fat storage on the body;

4) inability to exercise as normal during the 18 weeks of chemotherapy treatment

5) comfort eating because you are just so utterly miserable during chemotherapy treatment, and beyond caring about the consequences.

I got off quite lightly with parts 1 and 2 of the Breast Cancer Trifecta: my breast is in pretty good shape now after the lumpectomy, and the Cold Cap stopped my hair from falling out. On the other hand, I’ve put on so much weight around my middle that I look like a watermelon with legs - a giant watermelon with a little head perched on top.

And before you say ‘Oh, don’t beat yourself up about that, you just need to recover slowly and gently and worry about the weight later’, you need to remember one very important fact: being overweight is a very significant risk factor for breast cancer recurrence. Fat makes oestrogen, and breast cancer cells – my breast cancer cells, anyway - feed on oestrogen; I keep hearing in my head the remark of a friend’s oncologist that ‘body fat is the third ovary’.

Excess fat also stimulates the production of IGF1 (Insulin Growth Factor 1), and thence glucose, which cancer cells also love to feed on, so every pound of excess weight not only puts a strain on your body, but also provides a selection of hors d’oeuvres for any surviving CTCs (circulating tumour cells) out on the razzle and looking for a snack.

Had I expanded into the shape of a butternut squash, rather than a watermelon, it would be much less worrying – it seems that excess weight carried around the stomach is particularly dangerous, but around your hips and thighs, less so.  So here I am, at the end of my chemo treatment, wondering if I’m one of the 92% of women with my type of cancer for whom chemo doesn’t work, and with my body perfectly primed to be a MacDonald’s for circulating tumour cells.

It’s a truly sobering thought.

You can’t spend all your time obsessing about whether the cancer is going to come back after the doctors have done their work, but you can try your hardest to prevent it from doing so; from everything I have read on the subject the single most important thing I can do to lower my risk of a recurrence is to reduce my body weight, and that goes hand in hand with resuming regular and vigorous exercise as soon as possible, and eating a diet high in vegetables, fruit, pulses and whole grains, and low in refined carbohydrates and animal fats.

My prognosis is that I only have a 1 in 10 chance of the cancer recurring within the next ten years; read the on-line breast cancer forums, though, and you are struck by how many women posting there have seen their cancer come back within a year or two of their initial diagnosis and treatment.

That terrifies me.

There has never been a greater incentive to pursue the path of righteousness, and that path is paved with swimming, spinach and chickpeas.

If the fear of death doesn’t give me sufficient incentive to stay on the straight and narrow, then nothing will…

ps Apologies to  shinester, Deborah and Jen- some comments you made on earlier posts have only just showed up in the comments moderation box, I have no idea why, so they have just been very belatedly published.

Tarred and feathered

Day 128  

General status update

FEC cycle 6, day 12 

State of mind: resigned to being a complete basket case for the time being – everyone tells me that frequent emotional meltdowns are completely normal at the end of chemo.

Fatigue/weakness: continuing

Lachrymosity: lessening – I’ve only burst into tears twice today, so far.

Nausea demon: he’s theoretically still on duty, but starting to pack up his things.

Despair Demon: I wish he’d stop whispering in my ear about … all manner of horrible things.

Chemo Muse: she understands I’m having difficulties writing at the moment, so she made me clean the fridge instead. So SOMETHING got done today.

Chemo Brian: he keeps tempting me with Lorazepam, pointing out that in my current state

taking it is practically a public duty to protect the community at large from hysterical outbursts. He may have a point: I went to the bank today, became completely ENRAGED that rap music was playing at high volume as I was trying to make a money transfer (my computer key for doing online transactions at home is broken), and went and harangued the bloke on duty about it. He looked quite frightened. Mind you, he was only about twelve. WHY are they playing music in a bank, for God’s sake? HSBC, have you lost your corporate minds?

  

I was listening to an interview with the writer Julian Barnes on the radio today; talking about recovering from grief, he said that eventually you do come out of it ‘not like a train coming out of a tunnel, but like a gull coming out of an oil slick: you’re tarred and feathered for life.’

As soon as I heard that sentence, I realised why I’ve been such a complete mess this week: I was, idiotically, expecting to finish chemo like a train coming out of a tunnel. Instead I’ve been hauling myself, inch by slippery inch, out of  a toxic swamp, and I keep slipping back in; even when I’m back on firm ground again at the end of this last chemo cycle, it’s going to take a considerable time to clean off all the muck.

And some of it may never come off.

The poison is gradually leaving my body now, but I wish I could say the same for my mind: I only have to think about any aspect of the administration of chemo, or look at that photo of me in the wretched pink helmet, to start retching. The needles, the drips full of toxic chemicals, the clicking and beeping noises from the chemo machines, the searing pain when they put the frozen pink helmet on your head – my head is still full of these images, and I imagine they’re going to be haunting my dreams for years to come.

I’d love to be able to press ‘delete’ on my mental file of chemo memories, but that’s not possible. I know their impact will fade with time, so for now I just need to train my brain not to go there any more: I don’t have to go back to the chemo ward physically, and I’ve got to learn to stop revisiting it mentally.

You don’t have to go there any more, Caroline.

As Tears Go By

Day 127

General status update

FEC cycle 6, day 12

State of mind: lachrymose

Today I just can’t stop crying, certainly not long enough to write a proper blog post: it started earlier today at the Haven, when someone asked me how I was, and has continued on and off ever since.

The post-chemo mental meltdown thus continues….

Did Ye Get Healed?

Day 126

General status update

FEC cycle 6, day 11

The Chemo Demons are all still away in Paris – they’ll be back tomorrow. I hope they bring me some macarons.

Fatigue/weakness: slight improvement

Left Arm: still very painful – it’s almost as if it’s full of toxic chemicals - oh, wait…

Anxiety level/insane euphoria (+/- 1-10,000): Mais où sont les Dexys d'antan?

State of mind: slightly less batshit crazy than yesterday, which has to be good.

Another email from my friend Dor - à propos of yesterday’s firmly North Korean frame of mind - pointing out that North Korea has just changed its TV news topic from war alerts to preparations for festivals, which she hopes may also be a good omen for post-chemo world here in Gurkha Towers.

And I think she may well be right.

Today has been a lot better both physically and mentally, so I’m hoping that yesterday will prove to have been FEC’s last stand – or at least the last time it will be capable of completely defeating me in both body and mind. The nausea and stomach problems have abated, and today I at least felt human. In another week’s time it will be close to the end of the chemo cycle and the poison will really be leaving my body for the last time.

I had just got a bit ahead of myself with the euphoria of walking out of the chemo ward for the last time 10 days ago, which was stupid. If you’ve just been pumped full of toxic chemicals which will take at least 2 weeks to flush out of your system, then you are nowhere near the end – you are two to three weeks away from the end. Lesson learnt.

I’ve also been somewhat taken aback by my fairly extreme emotional reactions and mood swings in the ten days since the final dose of chemo, and one of my Cyber Chemo Buddies mentioned to me something her doctor had said about this: ‘the mind is a strange thing, it puts up with so much stress, but it's when we get back to 'normal' that it retaliates’. That seems to sum it up quite well – after 16 weeks, now that the chemo is very nearly over and I no longer have to find a way of holding myself together for the duration, my mind seems to  be saying ‘OK, that’s enough, give me a break now’ and letting me fall apart.

This has also been happening to others in my online group who started chemo with me back in December, and with whom I have travelled down this long and painful road, and it is very comforting to know that I am not alone in losing it in various ways. We’re all just slightly batshit crazy right now, to be quite honest; but at least we’re batshit crazy amongst friends.

A commenter on the blog yesterday tactfully suggested that this might be a good time to take myself down to the Haven, and she’s absolutely right: the Haven is exactly where I need to be right now. The therapies they offer are specifically designed to soothe minds and bodies ravaged by cancer treatment, and I am going to go there tomorrow morning and book myself into whatever is available. I’ve also got 5 more hours of NHS complementary therapies available, so it’s time to start taking advantage of that.

The surgery and the chemo have taken a very heavy physical and mental toll, but they’re done, and now it’s time for me to start making use of the resources available to heal both my body and my mind.

And I will get back in the swimming pool a week tomorrow, all being well.

Just 7 more days until I can get back in touch with my Inner Trout.

That's not very long at all.

A North Korea state of mind…

Day 125  

General status update

FEC cycle 6, day 9

The Chemo Demons have departed en masse to Paris for the weekend to get away from me, because my mood is so foul that I am now upsetting them more than they are upsetting me.

I am really struggling at the moment. It's day 9 after FEC6 and I still seem to be in a state of complete physical and emotional collapse.

My arm hurts like b***ery inside, after having the last 3 doses of chemo into the vein, and it's not getting any better - if anything it seems to be hurting more over the last couple of days. The side effects this time have just been awful - the nausea the worst since the first cycle - and above all else I am just so incredibly weak.

I keep melting down emotionally and bursting into tears. The end of chemo is having a much bigger emotional impact than I had anticipated, and the fact it has left me as this half-crippled physical and emotional wreck makes me angry.

I just feel so completely and utterly battered, in every way.

I have no desire to write the blog any more, I just want to turn my face to the wall. I’ve spent 125 days thinking and writing about cancer and chemo, and that’s enough for anyone. I've lost the desire to entertain, I just desperately, so desperately, want this all to be over.

The ‘I’ve finished!' exhilaration has completely disappeared, replaced by sullen resentment and anger that FEC is still torturing me, nine days after the last dose. I can't snap out of it, and don't imagine I will be able to until I start feeling better physically. And that's just not happening yet.

Not where I was expecting to be, this week...

Sorry for moaning, but I’ve tried to make this blog a fairly accurate representation of the lived experience of chemo, and this is where my lived experience is at right now: slap in the middle of a giant ball of anger and exhaustion, radiating negativity at the universe.

I know I have to be patient now, and that there is plenty to be optimistic about, but it doesn't make any difference.

I’m just in a North Korea state of mind…

Wisteria attached

Day 124 

General status update

FEC cycle 6, day 9

Fatigue/weakness: OK, I overdid it yesterday. Bone weary again today. So weak. I wonder how long it will be before I can wake up early, spring out of bed, put on my trainers and march to Barnes Bridge and back?

Nausea demon: 6am start – good; made me VERY nauseous – WTF? It hasn’t been this bad for a while. Mystifying at this stage in the last chemo cycle.

Despair Demon: expressing himself only through muffled banging noises from the airing cupboard right now; give it up, dude, we’re not letting you out any time soon.

Chemo Muse: she says she is perfectly confident of continuing to be around once the Dexys have gone – ‘I have other sources of power’. Hmmm. I wonder if she has discovered the secret to Spontaneous In-Brain Dexy Production. That would be good.

Chemo Brian: Have been telling him that when he comes with me to my Camel Barn in the Aegean next month, there will be not one but FOUR big comfy sofas to choose from – he is beyond excited.

State of mind: thinking about wisteria, mostly (see below),

Anxiety level/insane euphoria (+/- 1-10,000): you can’t be anxious, thinking about wisteria.

I got an email last night from my friend Dor in Ayvalik with the subject heading ‘Wisteria attached’. When I opened it there was a photo of the wisteria in her garden, which has just come into flower, to remind me of what I have to look forward to when I get to the Aegean in just over 3 weeks’ time:

  

 Oh, my.

Today I’m not thinking or writing about cancer or chemo or any of that stuff. Enough. I’m tired.

I’m just anticipating the wisteria.

Doing the math..

Day 123

General status update

FEC cycle 6, day 8

Fatigue/weakness: infinitesimal, but definite, signs of improvement. The slow shoots of spring are finally stirring inside me, as the tide of poison shows signs of being on the turn. Today I am up, dressed, and starting to do things, albeit  very slowly indeed..

Nausea demon: he let me sleep in until 5.30 am today – better. And today both the nausea and toxic stomach are at last beginning to wane – FEC6 will still be around for some days, but is beginning to lose its toxic grip.  AND THERE WILL BE NO FEC7!!!

Anxiety level/insane euphoria (+/- 1-10,000): anxiety increasing as we move into the ‘no immune system’ second week of the chemo cycle – my job now is to be hyper-vigilant about avoiding a last dangerous bout of infection, which could potentially threaten my upcoming trip to the Aegean for post-chemo R&R in 4 weeks’ time. BigSisFo, who will be accompanying me, keeps ringing up to remind me of this, and urging me to institute ever more draconian anti-infection measures. R has yet to agree to the proposed post-return from work whole body Dettol sheep-dip arrangement, though.

Despair Demon: the Chemo Muse has imprisoned him in the airing cupboard again using the simple expedient of pretending that she wanted to play bondage games. Now he’s gagged, bound, and wedged neatly in amongst the towels, and instead of that insidious voice constantly dripping poisonous thoughts into my ear there’s only the odd bit of muffled banging. Excellent.

Chemo Muse: today has been all about Getting a Grip again post FEC6, and she’s been helping me get me back on track in various ways – I wonder if I might be able to keep her on afterwards as well, as well as Chemo Brian?  Have I consumed enough Dexys over the last 4 months to alter permanently the structure of my brain, I wonder?

Chemo Brian: I’m sorry I was mean about his pony-tail yesterday; it was the FEC speaking. You know I love him really, and his pony-tail, and his little woolly rat familiar. They are the Sofa Crew, and they soothe my chemo-ravaged soul.

State of mind: Definitely feeling less demented today, as my physical state at last begins to improve.  And they say there’s a distinct possibility that the sun may come out in southern England for at least several minutes on Sunday, so there’s reason for optimism all round.

Previously on Chemo Nights: After  a diagnosis of grade 2 Invasive Ductal Breast Cancer in September 2012, and  a lumpectomy operation at the beginning of October, the pathology results show  a single micrometastasis in my sentinel lymph node, which means that I must have more treatment of some kind apart from the local radiotherapy on the affected breast. Of the treatments on offer, chemotherapy seems to be the one offering the least chance of long term physical damage, and my first meeting with an oncologist is arranged to discuss this. Now read on…

It is rather unfortunate that two days after hearing the bad news about the micrometastasis in my sentinel lymph node, I manage to knock one of my front teeth out. It has been a little wobbly for some time, and I’ve been careful, but on this Friday morning in October I bite into an apple without thinking and suddenly it’s hanging on by a thread, and then detached, cueing a major meltdown.

At that precise moment it feels as if the entire forces of the universe are lined up together, uniting to torment me; I start to cry and cannot stop. Cancer, chemo, teeth falling out – what next, a plague of locusts? I am crying so much I cannot make a phone call  to the dentist for an emergency appointment, but as my dentist’s surgery is part of the complex of buildings in the this mansion block, I can just hop into the lift and be down there in 2 minutes.

I feel for the receptionist at the Islamic Feminist Dental Practice downstairs, I really do. Having a wild-eyed woman burst in through the door and stand in front of you sobbing uncontrollably, whilst brandishing a tooth in a plastic sandwich bag, cannot be the best start to the day.  They are very kind, however, and glue and cement it back in, very temporarily, and then do it again three days later when the tooth re-detatches itself on the morning of the day we are to go and meet my oncologist for the first time.

My oncologist – now there’s a phrase to conjure with, a phrase to remind you that you are now officially resident in the Valley of the Shadow of Death, and that whatever shepherding services are available may or not be able to get you out of there alive – this time.

Dr K, the oncologist, turns out to be female, which on an emotional level I’m quite pleased about; after all those male surgeons I am more than ready for a woman doctor. Not only is Dr K a woman, she turns out to bear a startling resemblance to the glorious Dr Pippa Moore in the brilliant BBC4 black comedy about the NHS, ‘Getting On’, which R and I have been watching with huge enjoyment, and this is at first very disconcerting. I keep expecting Jo Brand to walk into the consulting room and start making trouble.

Dr K is probably considerably less impressed with me, as I am so psychologically and physically battered by the cancer diagnosis, the operation, the ‘you have a micro metastasis and this means CHEMO!’ news and now the tooth extravaganza, that I am constantly on the verge of tears as she begins to explain the further treatments that now await me, should I choose to undergo them.

Whilst your breast surgeon deals with physically cutting the cancerous tumour out of your body, and your further treatment plan is discussed by a committee of all the medics involved, your oncologist then initiates and manages pretty much everything else in the way of cancer treatment – in my case radiotherapy, chemotherapy (probably), and  hormonal therapy –  and so is the main point of reference once the surgery is out of the way.

These days cancer prognoses are all about 10 year survival probabilities generated from data derived from long term clinical studies under various treatment regimes, and translated into nifty little coloured bar charts via computer software. Adjuvant Online is a computer algorithm that takes in information about a specific woman’s cancer, and then produces survival estimates for her, illustrating her chance of survival and breast cancer recurrence based upon whether she chooses one set of treatments versus another. All cancer treatments come with risks, and this computer algorithm enables you to see the probable benefits you will get if you choose to take those risks. It’s all very mathematical.

 The oncologist just has to feed into the computer software your age, tumour characteristics (size, aggressiveness, hormonal status), number of lymph nodes  the cancer has spread to (if any) and, hey presto:  your own personalised set of colour-coded diagrams showing your chances of being alive, dead or recurrently diseased in ten years’ time, under different adjuvant treatment scenarios (adjuvant therapy meaning additional cancer treatment given after the primary treatment to lower the risk that the cancer will come back), as follows:

a) with no further treatment

b) with chemotherapy

c) with hormonal therapy (in my case , the oestrogen-receptor blocking drug Tamoxifen)

d) with chemotherapy AND hormonal therapy

And this is what you get (n.b. this is a random example from the internet, not my own chart):

The most striking thing about that image for me is the very low effectiveness of chemotherapy in breast cancer. In the example given, what the ‘3 out of a 100 women are alive because of therapy’ means, exactly, is that for every 100 women who undergo chemotherapy, it helps only three of them to survive: it doesn’t mean the rest are all dead, just that for only 3 women out of 100 does it make any difference to their survival – the rest of them endure its horrors, and its risks, for no result whatsoever. If they survive, it is nothing to do with the chemo.

In my case, confusingly, the probabilities are confused because the micrometastasis makes me a borderline case for 'node involvement'. The computer algorithm can only calculate for either 0 nodes involved, or 1-3 nodes involved; it doesn’t allow for micrometastases, one of which counts as somewhere greater than zero node involvement, but considerably less than 1-3. This means the oncologist has to produce predictions for both scenarios, and then take a rough figure somewhere in between, nearer to the zero outcome than the 1-3 outcome, to give me my personalised probabilities, which are as follows:

If I have no further treatment, then in 10 years’ time I have a roughly 76% chance of still being alive (although not necessarily free of disease), a 20% chance of having already died from cancer, and a 4% chance of having died of other, entirely unrelated, causes.

If I have hormonal therapy, that adds about 9% to my chances of surviving (my tumour was very highly oestrogen positive).

If I have chemotherapy, that adds about 7 or 8% to my chances of surviving.

If I have both hormonal therapy and chemotherapy, the combined effect is about 15-16%.

So if I take both the treatments on offer, 18 weeks of chemo followed by 5 years of taking the drug Tamoxifen every day, then my chances of still being alive in 10 years’ time increase from 76% to about 91 or 92%; to put it another way, the combined therapies reduce my risk of dying from cancer during the next 10 years from 1 in 4 to slightly less than 1 in 10 – it’s a significant improvement in the odds.

There are no guarantees, of course – this is all about probabilities. I imagine that there are 100 women somewhere in the world right now with the same set of age, health and disease characteristics as me, and they are all sitting with their oncologists, and looking at the pretty coloured diagram, and thinking ‘hey, I have a 92% chance of still being alive in 10 years’ time, that’s pretty good odds’.

However good the odds, it is inevitable that at least 8 of us will still die from our breast cancer within the next ten years, Tamoxifen and chemotherapy notwithstanding, (although that’s a much better number than 25, obvs).

No matter the therapy, if there’s a circulating tumour cell out there in your bloodstream with your name it, you’re still toast. 

                      

Still, the increased survival probabilities are significant, even allowing for the risks of the therapies (both of which can cause cancer themselves, amongst other things) and their potentially highly unpleasant side effects.

I’d be stupid not to do the chemo, my rational brain is telling me; but the voice of protest in my head – which has regarded chemo as the ultimate enemy for the 20 years since it killed my former husband at the age of 32 -  has turned into Amy Winehouse and is screaming ‘No! No! No!’, even as I allow the oncologist to book me in for 6 doses of FEC chemotherapy, beginning in mid-November. 

 Seriously  hoping neither of these Circulating Tumour Cells has got 'Fo' written anywhere on it....