Thursday, April 11, 2013

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....

Wednesday, April 10, 2013

Still totally FECked...


Day 122
  
General status update
FEC cycle 6, day 7


Fatigue/weakness: off the scale - this is getting very tedious.  PLEASE DESIST: I WANT MY LIFE BACK NOW

Anxiety level/insane euphoria (+/- 1-10,000): Great Big Dexy Fail -  fatigue beats all.

Nausea demon: he woke me up at 4.45 a.m., the little b***ard. I know he is trying to go out with a bang and not a whimper, but that was just not funny.

Despair Demon: Yeah, he’s right. Everything is tending towards a state of entropy, and the sooner we get there the better. WE’RE ALL DOOMED.

Chemo Muse: I’ve told her I’m on strike until I’m feeling better. Tools downed. Everyone reaches the end of their tether at some point, and I’m RIGHT THERE RIGHT NOW.

Chemo Brian: He needs to cut off that stupid pony tail – it looks ridiculous on a demon his age.

State of mind: the physical problems are nasty, but if anything the psychological side effects are now worse. During the  last couple of days I have started losing it, melting down at the slightest provocation. In sum, feeling extremely irritable and bad-tempered, and very unattractively sorry for myself – best avoided at all costs.



This is just horrible.

The last few days have taught me that I didn’t even understand the meaning of the word ‘fatigue’ until now. The exhaustion that is now overwhelming me is epic, completely debilitating, and on a quite different scale from the weakness and tiredness that I suffered during the earlier chemo cycles.

I just can’t do anything except lie down, and when I do get up to make a cup of tea or go to the bathroom, it makes me so tired I have to lie down again very quickly. I’m desperate to get outside into the sunshine, now that there is at last a bit of sunshine today, but I’m not even confident of getting as far as Brook Green, which is only 5 minutes walk away.

FEC6 (and presumably the cumulative, lingering effects of FECs 1-5) has taken ALL my strength away. There is nothing I can do but wait and hope for it to come back.

I’m still suffering from all the stomach-related side effects as well, albeit muted by the steroids,  and am now feeling worse, all-round, than at any time since the day I started chemo in December. It’s only now I can do virtually nothing at all that I realise how much I was still managing to do earlier.

I’ve written more than 120,000 words on this blog over the last four months (how did I do that??), but now I’m finding it hard to type even a few sentences.

I hate that. I want the blog to finish on a positive note, with renewed energy, and me beginning to get stronger again - that doesn’t seem likely to be happening any time soon, though.

Instead I'm writing less and less, starting to go completely stir-crazy after 4 months of virtual house arrest, and whining more and more.

Sorry about that.

I also have a horrible feeling I may have whined in exactly the same way during the worst days of all 6 cycles of FEC, and am now simply repeating myself ad nauseam - but I haven't read back and I certainly can't remember, what with Chemo Brian having made away with my brain.

Please send spinach.

Tuesday, April 9, 2013

How Not To Say The Wrong Thing To Someone Who Is Ill

Day 121

General status update
FEC cycle 6, day 6


Fatigue/weakness: continuing, but the other side effects are so bad today that I can’t do anything much, anyway, so it’s not really an issue.

Nausea demon: we had a 5am start, and he brought the Chemo Nano Rats with him- it’s Tormented Tuesday.

Anxiety level/insane euphoria (+/- 1-10,000): no longer anxious, just desperate, desperate DESPERATE for these last few days of torture to end.

Despair Demon: he’s out of the airing cupboard again, back here next  to me and whispering in my ear – he particularly likes the early hours before and after dawn, when I’m wracked with the nausea and toxic stomach, and there’s no one else around. He’s the voice of everything you ever did that has come back to haunt you, every failure, every way in which you have hurt and disappointed others, and he wants you to feel really bad about all those things. More than that, his aim is to kill hope - the thing with feathers – and convince you that there will be no good outcomes, that you are deluding yourself.

Chemo Muse: she’s agreed to give me today off as I worked hard yesterday, and because today I am in very poor shape indeed. I’ve asked her to take the Despair Demon out for the day, so I can keep my mind filled with good things, during what is going to be a very long and unpleasant day.

Chemo Brian: him, me, sofa, blanket, and a tab of Lorazepam- I’ve largely stayed off the sedatives during the worst days, but today I’m going to make an exception, because it’s still not 8am yet, and I have already been feeling like HELL for three hours now. Bring on a little benzo daze with Chemo Brian.

State of mind: the only good part of the day so far has been hearing a bird outside in the gardens, singing its little heart out, as I was grimly lining up all my meds on the table at 5am. It wasn’t a dawn chorus, it was just one bird, but it reminded me that hope IS the thing with feathers, and that this will soon be over, and that then I will be if not soaring, then at least swimming, away from all this. Splish, splash…


I’m feeling way too bad to write properly today, but there’s an article someone else has written that I’d like to share with you, as it’s the best piece I’ve ever read about what not to say to someone when they’re ill: it sums up exactly the entire problem of how some people make your illness about them, and add further stress to the nightmare that you’re trying to deal with.

Regular readers will remember that I suffered from a particularly egregious example of this early on in the chemotherapy treatment, at a point when I was at my very lowest ebb, and a close friend took it upon herself to write to me explaining how very difficult my illness was for her, how she was phobic about illness, couldn’t bear the fact that I was now all about the cancer, and therefore couldn't be around me until my treatment was all done, and how much she was suffering because I was no longer the old me and unavailable for jolly lunches like the one she had just had with another friend…

That email  upset me more than anything else anyone has said or done while I’ve been ill, and fighting for my life, and has simply obliterated what was once a close friendship. I should be a better person and rise above it, but my energies are needed for other things right now, and that’s the central point here; when you are dealing with a life-threatening illness, you do not have any energy to spare, and nor should you be expected to, for people who find your illness upsetting and insist on telling you about it. If you find your friend’s illness distressing, tell someone else about your feelings, not the person who is ill – you can only make them feel worse.

And that’s exactly what this article in the Los Angeles Times says, only much more eloquently, and with a truly excellent diagram. I commend it to you all.



Many thanks to my friend Dick Halsey, who brought this article to my attention yesterday after noticing how much it resonated with some of the posts on this blog.

Monday, April 8, 2013

Take a look at me now...


Day 120

General status update
FEC cycle 6, day 5

Anxiety level/insane euphoria (+/- 1-10,000): we haven’t hit insane euphoria again, which is very sad, because I LOVED being manic, but the mental energy from the Dexys has at least kicked in and made itself useful.

Fatigue/weakness: physically, still immeasurable; mentally, not so much now.

Pain in left arm: considerable – a nasty little souvenir from those last 3 doses of FEC which went straight into the vein, and not the PICC line. It’s also painful to extend my arm out straight. Deeply hoping all this is going to go away before I start swimming again in 2 weeks’ time.

Nausea demon: he woke me up at 6am this morning, and is fighting on to the bitter end, but soon he will be gone gone GONE.

Chemo Muse: she’s had me had at it today, despite the fatigue – there’s quite a lot of stuff she still wants to say before it’s time for her to depart.

Despair Demon: brooding in the airing cupboard again. I wish he wouldn’t keep messing up all the clean towels.

Chemo Brian: he’s been trying to persuade me to go and see Yoko Ono and the Plastic Ono Band at the Royal Festival Hall in June, having fond memories of her and John in their ineffably inane naked protest days. NO, a thousand times NO! I’m sorry, Brian, but there are some things life is definitely too short for, and Yoko Ono is one of them.

State of mind: this is the LAST TIME, this is the LAST TIME, this is the last TIME.

Hair: I look like a shaggy dog now, I really do. BUT I HAVE HAIR.



I haven’t been talking much about my breast, which is odd, really, given that this whole saga started the day I discovered it was trying to kill me.

No, that’s unfair.

It wasn’t my breast that that trying to kill me, it was the unwelcome invader that had taken up residence in my breast, my tumour, Mr Collins; the greedy empire-builder who had crept in unnoticed, set up base camp in my ductal tissue and was now looking to colonise my bones, my brain and my liver, given half a chance.

But my right breast is where Mr Collins chose to establish himself, and from the day I was diagnosed with cancer until after the operation to remove the tumour, it felt as if I was walking round with an unexploded bomb strapped to my chest.

We were not on good terms.

After the operation, the alienation from my breast continues in quite a different way; it becomes a source of both public and private humiliation. One of the things you have to get used to very quickly as a breast cancer patient is having to take your top off so that strange men (not always men, but in my case it usually is) can examine, manipulate and perform procedures on your breast.

I’ve just counted up the list of people who have spent time with my breast over the last seven months: the locum at my GP, the 2 consultant breast surgeons, Mr G and Mr H,  Mr H’s 3 acolytes (all male); and the mammographer and ultrasound doctor (female). All of these people treat me and my breast with decency and respect, and I have absolutely no complaints about their behaviour; the difficulty is more of a psychological one, arising during the regular check-ups I am given during the weeks following my lumpectomy operation.

At the Breast Care Clinic at Charing Cross Hospital, the consulting room used by Mr H is very small; there’s barely room for a desk, a few chairs, and the bed behind a curtain where you disrobe for examination. When I am there with Mr H and R, that’s as many people as the room can comfortably take. If you add in Mr H’s registrar, a junior doctor, and a medical student, then the room starts to feel very crowded indeed: me and five men, in front of whom I have to display my breasts, one naked and normal, the other recently mutilated.

I don’t like it at all.

In the weeks after the operation, my breast heals well; the spectacular black and blue colouring (black from bruising, blue from the dye) is an irrelevance and the only problems are in the first week, a slight build-up of fluid (seroma) in the place where the tumour was, which is painlessly aspirated with a needle by the junior doctor, and by the second week a hardness, an unyielding quality to the flesh in the same place, which Mr H assures me is perfectly normal, and will disappear in time (it did). The stitches, which are all around my nipple, are made with self-dissolving sutures, and so do not have to be removed; they gradually begin to remove themselves.

All is well, all is going according to plan.

By the time it comes to the third check-up, though, I am also having to deal with the high likelihood that I am going to have to undergo chemotherapy, and am both distressed and emotional, and it all just becomes too much. At this appointment I am accompanied by my sister, but she is away fetching coffee when I am called into the consulting room, where I sit down with Mr H and, as the registrar, the junior doctor and the medical student also crowd themselves into the room, I think ‘No – I really cannot STAND this’.

So I just say, quietly, ‘I’m sorry, but there are too many people in this room’ and immediately and without question the registrar removes himself, the junior doctor and the medical student, which is not good for medical education, but saves me from breaking down in public.

I should add that my permission was asked at the outset for other doctors to be present at consultations, and I agreed; Charing Cross is a teaching hospital, and doctors need to be taught. I just had no way of knowing in advance how difficult I would find it to be half-naked, and examined by several male doctors in such a very small space. Maybe if one of the doctors had been female, or we’d been in a larger room, it wouldn’t have made me quite so distressed and uncomfortable.

At home I just try to ignore my breast altogether, keep it covered with soft camisole tops and tell myself that I am leaving it alone to heal, but that’s not really it: I don’t want to look at it, and I certainly don’t want R to look at it. I can’t bear this new bit of reality just yet.

It’s tricky, though, in the bathroom each morning when I take my shower, but with looking away when I’m applying soap, and big enough towels, and assiduous not looking in the mirror, I can contrive to get through my ablutions without really looking at my breast.

Until the day I when I do.

Towards the end of October, nearly a month after Mr H removed the tumour, the bruising has almost gone, and I get out of the shower, dry myself off, wrap the bath towel around my waist and stand in front of the mirror, looking at my breasts, full-on, naked. This is the first time I have done this since the operation.

The breast is still the same size and shape as it was before but the operation has had the promised effect of lifting it, so that the nipple is a little higher up, although the difference is not enormous.

What is different is the livid line of stitching that outlines the areola of the nipple, making it look much larger than before, and quite different from the other breast. My breast looks as if it has been sewn together from two different parts. It reminds me of….

Last autumn in London there were newspaper adverts and bus stop posters everywhere for a film by Tim Burton called Frankenweenie, about a boy who conducts a science experiment to bring his beloved dog Sparky back to life, with monstrous consequences, a la Frankenstein; the adverts and posters all featured a striking image of the poor dog, very clumsily stitched back together, and this is the first thing that comes into my mind as I stand there in the bathroom and look at my cut-open and stitched-back together breast.



Something breaks inside me at this moment of looking properly at my breast for the first time, and I stand there with tears pouring down my face, sobbing uncontrollably. I must be making a lot of noise because R immediately calls through the bathroom door ‘Caroline! What it is, what’s the matter?’ I open the door without covering myself up and he, too, sees my breast for the first time as I point to it and howl 

‘Look what they’ve done to me, it’s horrible, it’s a FRANKENBREAST’.

I am completely beside myself, and R puts his arms round me, holds me close, strokes my hair and calms me down.

‘It isn’t going to stay like that,’ he says ‘it ISN’T GOING TO STAY LIKE THAT. Remember what Mr H said – the scarring will gradually fade, and by a year after the operation, you will barely be able to see anything at all. Your breast will look pretty much like it did before.’

Rationally, I know this, that it will get better, but all I can see now, as I look at it properly for the first time, is the mutilation of my once beautiful breast, one of the things about me that R particularly appreciated.

And this is a special part of the horror that awaits women who get breast cancer: not only the threat of death, which is bad enough, but the fear that the treatment will mutilate you so badly that no one will ever look at you with desire again, if you’re single, or the fear that your partner, if you have one, will turn his eyes away from you, unable to hide his repulsion, that he will never want to touch you again. If you can’t even bear to look at yourself, what kind of reaction can you expect from anyone else?

‘You’re still you’ says R ‘and your breast will be fine, it’s just being mended. The operation has saved your life, and your breast will get better again. And this means you will stay alive, and we will grow old together, as planned.’

Then he kisses it, and me, better.

R is really, really good at that.


*     *     *

 Postscript: that day was nearly six months ago now and, as Mr H has promised, the scars have faded a great deal, and the ‘stitching’ effect has gone. Mr H is an excellent surgeon, and my breast is looking relatively normal again. I no longer become distressed when I look at it in the mirror.

In a way, I feel guilty for even writing about this, because I know that I am very lucky to have kept my breast: so many women lose their breast, or both breasts, entirely, and have to suffer far worse things than I have had to.

 But I can only tell my own story, truthfully, and this is how it was. 





Sunday, April 7, 2013

No surrender


Day 119

General status update
FEC cycle 6, day 4

Fatigue/weakness: too weak now to do anything, much. It’s BAD. It will pass. This is the LAST TIME.

Anxiety level/insane euphoria (+/- 1-10,000): for the first time the fatigue is stronger than the Dexys. Insane euphoria sadly absent.

Nausea demon: our early morning meds and breakfast assignations are taking on something of an elegaic quality – both he and I know that we only have about another week together.

Chemo Muse: she’s waiting impatiently for the fatigue to stop trumping the Dexys, and amusing herself with the Despair Demon in the interim. Poor besotted fool.

Chemo Brian: on reflection, I think I’d rather like to keep him, and given that the after-effects of chemo may go on for the next 3-6 months, I don’t see why I shouldn’t.

State of mind: will be a lot better after this week is over – I’m not finished with FEC until FEC has finished with me.

Hair: Well, I’ve had the final dose of chemo and it still hasn’t fallen out – who would have thought it? It’s thin, it’s tatty, but it’s still pretty much all there, whichs has been a matter of wonder and amazement to all, and a huge stroke of good fortune for me. I can’t gloat about it, though, knowing the huge grief that losing their hair has caused to my Sisters in Chemo; it really is like being kicked when you’re already on the floor. 
  

It’s so close to the end now, but it’s still so hard – FEC doesn’t want to let me go just yet.

I’m so weak that the slightest physical exertion, and I mean the slightest, exhausts me, and I have to sit down and rest. My legs feel like jelly, and the bottom half of my left arm hurts quite badly inside from the toxicity of the chemotherapy drugs that were pumped into me on Thursday. The nausea and stomach pains are perhaps at 40% of the level of the earlier cycles, now the meds have been sorted, and with extra steroids to boot, but it's still extremely unpleasant.

It’s day 4 and today and the next few days are the worst, so I just have to grit my teeth and bear it, keep reminding myself that is the last time, THE LAST TIME, that 3 weeks from now I will not be entering another chemo cycle, I will simply be getting better and stronger.

Soon I will be swimming again, gliding through the water, the cool silky water, free from the PICC line, free from the needles, free from the poison, free from the chemical prison.

I just have to get through this week of feeling terrible, and the following week of having no immune system, and then I can get back in the pool. My greatest fear, right now, is of anything happening to stop that.

I am desperate to get back in that pool, and I will.

There will be no retreat, no surrender.






Saturday, April 6, 2013

Lean on me…


Day 118 

General status update

Fatigue/weakness: I’m too weak to write the general status update today, but the Chemo Demons are all perfectly fine, thank you.


FEC is not going to let me go easily, and today it just came and rugby-tackled me from behind: the nausea, the stomach pains and the quite overwhelming weakness and fatigue.

I am floored, even with the steroids: the Dexys give you an artificial mental high, but they can’t make the rest of your body work when it’s totally, totally FECked. Matron Becky warned me this might happen, going into my last dose of chemo when I was still feeling so very weak, and she was right. Today I didn’t even make it onto the sofa with Chemo Brian, I just spent the day lying on the bed; even getting into the shower and getting dressed seemed more than I could possibly manage.

But I could see it was such a beautiful sunny day outside, and in the end the need for air and light overcame the desire to stay horizontal: it was a monumental effort, but I got myself together and then got myself outside, and walked – OK, tottered - down to the river, which normally takes ten minutes, but today was more like twenty-five. I had to stop and rest on the way. When I got there, I collapsed onto the nearest bench I could find, and made no attempt to walk any further.

But I did get there: Fo -1, FEC - 0.

And I sat in the sun, and felt the breeze on my face, and that was so, so good. 

There’s lots of research saying that fresh air and exercise help a great deal with tolerating the side effects of chemo, and it’s true. Much as I love Chemo Brian, getting outside and moving around every day, even if only for a short while, is so important: and apart from the physical benefits, it stops you feeling like a prisoner.

R, who’d been out taking his little boy to the Science Museum, came and collected me from my bench, gave me a mild scolding for overtaxing myself, and walked me home.

I could have made it on my own, but it was so much better with his arm to hold on to.




Friday, April 5, 2013

The PICC line (deceased) laughs last


Day 117 

General status update

Anxiety level/insane euphoria (+/- 1-10,000): Yoo Hoo! The Dexys are HERE!!! I am ruling the world this week and that Teletubby Infant Despot in North Korea had better not start messing with me!

Fatigue/weakness: weird combo of artificial steroid high and much enfeebled body –the spirit is up for pretty much anything, but the flesh is very, very weak.

Nausea demon: he woke me very early this morning and we had hot buttered toast and marmalade, and big steaming mugs of tea, mine with a chaser of 3 different anti-emetic drugs, a dose of Dexys, and some of the magic anti-Chemo Nano Rats elixir, Omeprazole. I wonder what the calorie count of all those drugs is?

Despair Demon: has cheered up a lot since his coffee date with the Chemo Muse yesterday – totally delusional, of course. SHE’S USING YOU, YOU FOOL. Doesn’t the fact that her hair is made of SNAKES give you a hint that she is not quite like other women?

Chemo Muse: she’s inhaling the steroids and reverting to her full Dexy’d magnificence and power – she‘s been filling my mind with ideas all day, non-stop.

Chemo Brian: we’ve put in some quality time today, some of it in public, which was embarrassing (see below).

PICC line (deceased): its spectre appeared in the Chemo Ward yesterday, much to everyone’s surprise (see below)

State of mind: so happy – you cannot begin to imagine how happy I am – never mind the two weeks of horrible side effects to come – I am HAPPY. No more FEC.

Hair: in the snood, dude.


I won’t say that I actually skip down the Fulham Palace Road towards my final dose of chemo, but there is definitely a spring in my step, and a mood much lightened by an industrial-strength dose of painkillers (pain from the Cold Cap, for the alleviation of), some Lorazepam (dread of FEC6, for the alleviation of), and the happy, happy thought that when Matron Becky puts the needle in my arm this morning, it will be the last time anyone comes after me with a sharp pointed instrument for some considerable time.

But this is FEC, remember, and during the administration of the first five doses things have gone consistently wrong, so why I am skipping blithely towards the hospital assuming that nothing can else bad can possibly happen now is a mystery, the triumph of hope over experience, and perhaps the influence of too many powerful drugs taken too early in the morning.

R is loaded down with one bag containing a Pret picnic, fruit, and a variety of cold beverages, and the other containing my giant knitted throw (cold from the Cold Cap, for the alleviation of), my Smurf hat and snood, and lots of reading material in various formats. You’d think we were going to Glyndebourne or Glastonbury, not the Chemo Ward. By FEC6, we have now got this side of things down to a fine art.

Since the removal of the late, unlamented PICC line from my upper arm, I am now having the chemotherapy drugs injected directly into the veins on my lower arm, and after Matron Becky did this for FEC5 she pointed to the back of my hand and said ‘There – there’s one left we can use next time’, which was very reassuring, given that my pathetic lack of veins was why they inserted the PICC line into my arm before chemo started, after the unfortunate incident before my lumpectomy operation when the anaesthetist couldn’t find a vein into which to put the general anaesthetic.

So, I’m sitting in the Big Pink Chemo Chair for the last time, and Matron Becky, resplendent in her maroon Matronal Frock, readies herself to insert the Final Needle. She picks up my hand and looks at it doubtfully, as do R and I. There are no veins to be seen. Not one. I’m just not a very veiny person, but if you stare closely at the back of my hand you can usually see a faint tracery of something pulsing deep under the skin.

Not today. The veins have run for cover and retracted deep below the surface of my skin. There is nothing to be seen.

‘Hmmm’ says Matron Becky, and she puts a rubber strap round my arm and tightens it to encourage the veins to come out of hiding. There is a slight improvement, and Becky decides to go in…

I’ll spare you the gory details, but this is essentially the ‘Fo Veins Total Non-Cooperation Day’ and all the time in the background, as my arm is plunged repeatedly into buckets of hot water, and three different nurses stick a total of nine needles into my recalcitrant veins, the spectre of my PICC line is standing to one side, laughing, and saying ‘NOW do you regret throwing me on the scrapheap?’ Becky and I pretend not to notice it; we don’t want to give it the satisfaction.

At one point during this one and a half hour needle ordeal, Becky and I both find ourselves staring wistfully at the back of one of R’s hands, which is not unlike a relief map of the Yangtze delta. There would be no problems putting a needle in there.

You’ve got very good veins, R,’ says Becky.

R looks proud.

‘If you were in here as a patient, we could let the student nurses practice inserting cannulas on you’ Becky continues.

R blanches visibly, and decides this might be a good time to go and fetch more coffee.

After about the sixth painful, unsuccessful needle insertion, I start to cry, which distresses both R and the nurses, who are doing their best, and whose fault it most definitely isn’t; I just have the very worst type of veins.

By the time we get to the ninth needle, and there aren’t really other options left in terms of places for insertion, I am beginning to wonder what will happen if they simply can’t get a needle to stay in – will they have to postpone the chemo? Happily this question remains unuttered, as at last we have lift off, and the cannula is put in place.



Now it’s time for the intravenous anti-emetics and steroids, before we get to the main event, and the Cold Cap goes on for the very last time, and I recite poetry and emit small squeaks of distress as the pain encircles and penetrates my skull and my head freezes for the very last time. That pink hat may look very jaunty, but I’m not going to miss it One Little Bit.

I don’t remember much about the chemo, except for the fact that I have a nursing assistant sitting beside me for the whole time they were infusing the bright red Epirubicin, most vicious of the FEC chemo drugs, to make sure my vein didn’t explode. Seriously. She is under strict instructions to pull out the cannula at the first sign of spontaneous vein combustion. This stuff is NASTY.

R sits next to me reading and tweeting, a comforting presence,



and at some point, exhausted by it all, I drift off to sleep under my big knitted throw. Then the nurse wakes me to say it is all over, and I can take the pink helmet off, and go home. I towel the ice off my hair, and don the Smurf hat and snood, while R packs up all our paraphernalia.

And that’s it: FEC6 is done - my chemotherapy treatment is finally, finally over, after what seems like a lifetime. Two more weeks of side effects to get through, two more weeks of trying to avoid infections which may require more hospital treatment, and then I will be free, although it will take me anywhere between 3 and 6 months to regain my full strength, by all accounts. And there’s still the radiotherapy treatment to come in May

But the door to my chemical prison is now open, and I walk out of it and up the Fulham Palace Road holding hands with R.

‘Your veins are amazing’ I say ‘You could give Madonna a run for her money.’

‘Your veins are just non-existent’ he replies. ‘I begin to understand why you claim to have been a trout in a former life. Has it ever been formally confirmed that your body actually holds the full complement of eight pints of blood?

‘Oh, bugger off, you’ I say.

We are so, so happy.


And to complement that mood, this video sent to me the other day by BigSisFo of a Beethoven's Ode To Joy flash mob in a Spanish square, is one of the most joyous, life-affirming things 
I have seen in a long, long time...




Thursday, April 4, 2013

FEC nisi


Day 116 

General status update

Anxiety level/insane euphoria (+/- 1-10,000): had the first dose of Dexys intravenously in the chemo ward, but they won’t really kick in until tomorrow.

Fatigue/weakness: to the max

Nausea demon: for the next 10 days or so it’s just him fighting against the Fosapprepitant, Ondansetron, DomPeridone, Cyclizine and the Dexys, and he’s already ramping it up; I expect the big push to commence with a wake-up call at around 5am, judging from previous experience.

Despair Demon: starting to look pale and ill as the Dexys begin to take effect – Dexys are Kryptonite to anyone professionally engaged in despair production and management.

Chemo Muse: she’s anticipating the Dexys and is starting to go all glittery around the edges.

Chemo Brian: I left him and Chemo Rat Brian together on the sofa to keep my place under the big knitted throw warm while I write this, and will be returning to them the instant I have published this post.

PICC line (deceased): its spectre was haunting the Chemo Ward today – more on that tomorrow

State of mind: dazed and relieved. So relieved.

Hair: A big day for Hair - frozen, glooped and now comfortably ensnooded - you can hear the loud purring through the snood.

  
Yes, I’m now completely FECked; the 6th dose was administered between 10.30 and 4pm today –as usual there were unpleasant and painful complications, this time unavoidable, which I’ll write about tomorrow. For me, FEC has never been simple…

The last dose of chemo is like getting a decree nisi in a divorce; it’s all over bar the shouting, but you have a few more weeks to get through until the decree absolute can be issued. In my case, FEC absolute can’t be announced until we’ve got through another two weeks of full-on nastiness: first, the nausea and toxic swamp stomach extravaganza, then the ‘nadir’ with the nuked immune system,  concomitant fatigue and high danger of infection. FEC can still have a last go at putting me in hospital again, so the last dose isn’t a full stop; it’s a semi-colon before FEC and 1 go on to finish my sentence inside the chemical prison.

We’re almost there, but not quite – but at least I can go to bed tonight safe in the knowledge that I’m never going to have face the freezing agony of the pink helmet again.

I’m very tired and weak and woozy after the chemo, so I’ll stop there and return to cradling my new big bottle of Dexys to my bosom on the sofa. Normal service will be resumed tomorrow…


Chemo Rat Brian nestled in my big knitted throw (and future shroud )
on the sofa, looking after the Dexys while I write this blog post



Many thanks to all of you who were willing my neutrophils on to victory, yesterday; it must have worked, because they turned up for the vital blood test all present and correct. 

Wednesday, April 3, 2013

See the Alpha Male Oncologist, hear him ROAR!


Day 115 

General status update

Neutrophils: all present and correct, surprisingly.

Fatigue/weakness: profound

Anxiety level/insane euphoria (+/- 1-10,000): expect sharp upwards progression towards the insane euphoria end of the spectrum after the delivery of the Dexamethasone prescription tomorrow. CAN’T WAIT.

Nausea demon: he’s getting an early night before going back on duty for FEC6 tomorrow. He can’t wait, either.

Chemo Muse: she can’t wait  for me to give over with all the feebleness and wimpish flopping about in exhausted attitudes on the sofa, and get back to bouncing off the walls and writing up a storm in the post-FEC Dexy Frenzy. And I'm with her on this one.

Despair Demon: looking all moony again, and seems to be writing sonnets back in his den in the airing-cupboard – can there be anything more tiresome than a Chemo Demon in love?

Chemo Brian: reading what he describes as an ‘urban fantasy’ novel. I’m thinking it’s probably not Plato’s Republic.

State of mind: not testosterone-friendly, tonight.

Hair: readying itself for some snood action tomorrow. Talking of which, Vicki sent me a dog-in-snood photo this morning, to cheer me up, and it made me laugh immoderately. JOB WELL DONE.


I came across a new sub-species of doctor today, down at the oncology clinic at the Charing Cross Hospital: the Alpha Male Oncologist. That’s an important new sighting for my I-Spy Book of Oncologists; I’m close to completing the full set now.


My heart sinks this morning when I am called in for my final pre-chemo appointment by yet another new registrar who doesn’t know me or my history; during my six pre-chemo appointments, I have seen 4 different oncologists, three of whom have been sprung on me unannounced. It doesn’t really matter: they’re all skilled and efficient, they all tick the boxes required to ensure you are fit and ready for your next dose of chemo, and they all prescribe the appropriate drugs, but it’s very wearing having to both explain yourself anew to, and try to establish some kind of rapport with, a new doctor before every dose of chemo.

I have at least seen  (Her Blessed Holiness) Matron Becky beforehand, as she offered to take my bloods early so they would be ready in time for the appointment with the oncologist.

Becky is inclined to think that postponing the chemo for a few days, say until Monday, might not be a bad idea, whatever the level of my neutrophils, given just how weak I have been for the last few days.  The 3 week chemo cycle, she says, is designed to give your body enough time to recover your strength before your next dose of chemo, and it is obvious that I am currently nowhere near full strength, possibly because of the virus last week, or perhaps because my body has now been battered by 5 doses of poison. Maybe listening to my body might be a good idea, whatever the neutrophils say. Or perhaps they could give me a slightly smaller dose this time - this often happens. She will email the registrar about it, the nice registrar Dr V, who gave me all the extra steroids last time.

At the oncology clinic a little later on, however, I get to see the holiday relief registrar, Dr S, instead.

I’m still feeling so rotten that I’m half-inclined to agree with Matron Becky about a short delay, despite my intense desire to get FEC6 over with tomorrow. In the interests of full disclosure, and because it is probable Dr S won’t have seen Becky’s email (it not having been sent to him), I mention this conversation, after he asks me a couple of questions about nausea which are really no longer relevant, as we are totally on top of the anti-emetic medication now, after 5 doses of FEC. He doesn’t know this, of course, because he’s never met me before.

I am half way through a sentence beginning ‘Becky suggested it might be a good idea for me to delay the chemo for a few days, and I think..’ when Dr S interrupts me.

‘That’s a decision I will make’ he says ‘when you have answered all my questions.’

There is a very strong emphasis on the ‘I’.

Well, that puts Matron Becky and me firmly in our places, then.

I’m deeply unimpressed that this man chooses to dismiss out of hand the view of his colleague the Chemotherapy Matron, who knows me well and who has personally been looking after me for the last few cycles of FEC, after the many problems occurring during my chemotherapy treatment, but it’s clear that neither Becky’s or my opinion counts here. What counts is whether, in his judgement, I fulfil the clinical criteria for being physically fit enough to withstand another dose of chemo. Other input is not welcome.

And you know what? I am just too weak, too mentally and physically exhausted after 7 months of cancer, and 4 months of chemo, to argue any more with yet another AMA (Arrogant Medical A******).

Yeah, whatever.

So, quite uncharacteristically, I shut up, answer the questions, offer no further unsolicited remarks and await Dr S’s clinical judgement, which is that I am perfectly fit to undergo the last dose of FEC, so long as my neutrophils are in order (which, an hour after our meeting, the blood results show that they are).

I have been efficiently processed through the system, and the requisite boxes have been ticked.

We have come full circle now, from my first day at Charing Cross Hospital last September, the day of my biopsy, when the spectacularly discourteous consultant breast surgeon, Mr G, failed to introduce himself to me at the start of our meeting and only gave me his name, with reluctant surprise, when I demanded it before leaving the room. Now, seven very long months later, I am confronted by a complete stranger, not previously involved in my care, telling me that any decisions about my final dose of chemotherapy are his, and his alone, to make.

The fact that I feel like s*** is neither here nor there.

Patient/nurse input not necessary.

*     *     *

I did discuss all this further with Becky later, on the phone. Between us we decided that even though I am feeling so rotten, the psychological boost of having the final chemo on schedule probably outweighs the further physical battering FEC6 is about to give me. She did warn me, however, to take it very, very easy after the chemo, as it may take me longer to recover this time, given how weak I currently am even before they pump the toxins into my system again tomorrow. I would no doubt have reached the same conclusion with Dr S, had he been inclined to open the matter up for discussion; I feel a whole better about it now, though, having been given the opportunity to talk it through with God’s Own Matron. I am SO going to miss Becky as I stride off into the sunlit uplands of my post-chemo future, but she has said I can call her any time.

That’s what chemo patients need, ye Gods of Charing Cross Hospital – someone they can talk to, who knows them, and who cares. Matron Becky, unfortunately, can’t do it for everyone – she gets to troubleshoot for patients like me, who have problems. But it makes me think that the move towards nurse-led pre-chemo meetings for patients will probably be a very, very good thing.

Far better 30 minutes with an expert nurse who knows you, and has time to talk through your issues, if any, than 10 minutes with an oncologist whom you may not have previously met, who may or may not be familiar with any of your history, and whose clinic is probably running more than an hour behind (oncology clinics almost always run at least an hour behind, in my experience).