However…

Day 105 

General status update

Anxiety level/insane euphoria (+/- 1-10,000): have skied slowly down to the blue slopes now, away from the dizzying black runs of my seven day Dexamethasone high…

Fatigue/weakness: So tired, so so tired… weak and wobbly legs, dizzy spells when I stand up, although I’m not doing that very often at the moment.

Collateral damage: there being no such thing as a free lunch, the removal of my PICC line has come at a cost – after the last 2 doses of chemo drugs going into veins on my hand, I now find that my left arm is rather painful inside along its lower half, the effect of the toxic chemo drugs travelling up inside the much smaller veins in this part of the arm. It’s been like that for10 days now, since the last dose of chemo. I have no idea how long it will take to wear off, or whether the inside of my arm is permanently damaged, and it makes me a little anxious about the incremental effect of the sixth and final dose of FEC in 11 days’ time. I don’t regret getting rid of the PICC line, though: that has led to a huge reduction in stress, and freed me from the hospital until it’s time for FEC6.  Starting to get my life back…

Eyes: this is new – major blurriness going on, whichever pair of spectacles I wear. I know it’s to do with the chemo because a number of my Chemo Cyber Buddies have been having eye problems throughout, and I know it’s temporary because they’ve all become alarmed about it, and then been assured by their oncologists that their eyes will stop doing weird things after the chemo has finished. It’s quite disconcerting, though, and is making it hard to read a book or focus on a computer screen, which are the two things I spend 90% of my waking hours doing.

Nausea demon: his work for this cycle of FEC is pretty much done, and he’s trying to distract himself from his broken heart by making plans to go away for Easter. He’s got no one to go with, though, because the other Chemo Demons have to stay here with me. I suggested one of those National Trust holidays where you go and repair dry stone-walling, or something, although given the current weather you’d be hard –pressed to find the walls under the snow, come to think of it. Maybe a spa break?

Chemo Muse: she’s been out walking by the river today, hand in hand with the Despair Demon – all very romantic. It must have been unspeakably cold but Chemo demons, happily for them, are not affected by Severe Weather Warnings, unlike the rest of us.

Chemo Brian: He soothes my soul on the sofa, during these weak and feeble days of the cycle.

State of mind: for the very first time, looking forward to the next chemo cycle, knowing it will be THE LAST

Hair: complaining about split ends, now it’s stopped worrying about falling out – we’re not having a trim until the chemo is FINISHED though, sorry.

Previously on Chemo Nights: it is October 5^th, 2012, and I have returned home from the hospital the day after my lumpectomy operation feeling really rather fine, thank you, and sit on the sofa for a couple of hours happily tweeting and phoning family and friends. Now read on….

The vomiting  - urgent, violent - starts towards evening and continues through the night; meanwhile, the morphine gradually wears off and my body is left feeling much as if I have been very thoroughly beaten up by professional thugs, the kind who know how to inflict severe damage all over your body without leaving any marks on your face.

Nausea and vomiting are not uncommon after general anaesthetic, but this is accompanied by an acutely sore throat, stomach pains and toxicity (a quite comprehensive foretaste of what is to come later with chemo, did I but know it), a positive cornucopia of unpleasantness.  I have no idea what has hit me, or why, and am not thinking too clearly anyway, as I stagger back and forth from the sofa to the bathroom for the next several days, but I do dimly realise that it shouldn’t be as bad as this, that there must be something wrong in the mix.

I call the Breast Care Nurses at the hospital; Vanessa is unavailable, but one of her colleagues tells me that unless I have a fever, there is no real cause for concern – I just have to ride it out. Eventually I stop taking the medications I brought home with me from the hospital – antibiotics, heavy duty painkillers, both of which may have bad side effects - in case they are causing the problems, and after 4 or 5 days the symptoms begin to ease.

Later, we untangle the probable causes of these few days of extreme torment: a bad reaction to the radio-active dye injected into me before the operation (stomach pains, toxicity), and an allergic reaction to Amoxicillin, the antibiotic they gave me after the operation (the violent and repeated vomiting); I am now officially allergic to Amoxicillin. The painful throat was caused by the tube they put down it when you’re under a general anaesthetic.

The diagnosis of cancer was my introduction to psychological hell; these post-operative days constitute my initiation into the physical suffering part of the programme. My imagined brief sofa convalescence curled up with books and magazines is replaced by days of physical and mental anguish, bafflement and incomprehension. R is running the Royal Parks Half Marathon on behalf of the National Autistic Society on the Sunday, three days after my operation, and I had assumed I would be up and about again by that time, and able to go and cheer him on; he has trained for six months for this, and it is important for both of us.

Instead, while he is out giving his all in the autumn sunshine, I lie there and weep because he has to go and do it all on his own. Over the next few days, when R is out at work and I am home alone on the sofa I make, in a frenzy of sheer desperation at the state I am in, some phone calls which must be highly distressing to their recipients, as they are simply lengthy howls of pain and despair (Kathleen, Gill, Lynette, Clare, Sue - sorry about that, and thank you).

R just asked me what I am writing about today, and I said ‘the days after my operation’. He grimaced at the recollection: ‘Those days seemed much worse than anything you’ve been through on chemo’. He is right – but it’s hard to transmit the full flavour here, because I wasn’t capable of writing anything down at the time; I was much too busy vomiting, repeatedly.

I remember those days now as through a glass, darkly; it’s probably just as well the detail has been blurred in the interim. Looking back now, though, I just think how extraordinarily lucky I was, in the first few decades of my life, never to have encountered this level of physical trauma before; it happens to people all the time, but somehow I managed to skate through into middle age with persistent coughs, and a single bout of pneumonia, as the worst I’d ever experienced, physically.

Which is another reason for not saying ‘Why me?’  When you've had such outrageously good luck for so long, it would really be rather churlish to complain just because it's finally run out, wouldn't it? Human existence is all about suffering, after all – I just seem to be collecting my ration all in one go. 

During this horrible week my breast, ironically, doesn’t give me any problems at all: the operation has been successful and without complications, the pain is minimal, and it just sits there healing quietly - albeit literally black and blue, black from the bruising and blue from the radioactive dye - under the surprisingly small dressing until such time as we are due to go back to the hospital for Mr H. to check on it.

And to give us the pathology results.

The all-important pathology results will tell us how big the tumour actually was, whether it had clear (i.e. cancer cell-free) margins of tissue around it and what else they might have found there, or in my lymph nodes.

Whatever is predicted by the doctors on the basis of the mammograms and ultrasounds, and then the biopsy results, nothing is known for certain until the tumour has been removed, the lymph nodes examined, and the pathology results are in: this is one of the most difficult aspects of a breast cancer diagnosis, that the bad news – and there very often is more bad news – is drip fed to you, slowly. It’s not the fault of the doctors, it’s just the way the information slowly unfolds itself as different levels of technology are applied to finding and then removing the tumour, and then determining whether or not it has already sent out raiding parties to start colonising other parts of your body.

12 days after the operation, by which time my physical state has improved considerably, and my mental state very little, we have an appointment at the Breast Clinic to see Mr H again.  It is time to move on to the next stage of the proceedings, and see if there are any more surprises in store. We are reasonably optimistic: mine was an early stage, not particularly aggressive cancer, and the tumour was not a big one; the doctors thought it was unlikely to have spread beyond my breast. With any luck, this will be confirmed today, and then it will just be 3 weeks of radiotherapy on the breast, to ensure that nothing nasty is left lurking in the area where the tumour was, then 5 years of taking a Tamoxifen tablet every day, over and out.

Simple.

We sit in the waiting area of the breast clinic, holding hands, until Mr H comes out and ushers us into his office. As we sit down, someone else comes into the room: Vanessa, my Breast Care nurse, aka the Angel of Death. The first time I saw her, on the day of my diagnosis, was the moment when I realised that I had cancer, even before being told, because her presence would have been redundant otherwise.

When I see Vanessa my body immediately goes into hyper-alert mode, whilst my mind starts ricocheting in panic around the walls of my skull OhmyGodthere’sVanessashe’sonlyhereifit’sbadnewsistheregoingtobemorebadnewsohGodwhywhywhyisshehere?

Mr H is his usual charming self, and tells us how pleased he is to say that the margins around the tumour were entirely clear, which is excellent news (if they hadn’t been, another lumpectomy or even a mastectomy would have been necessary).

R and I, sitting close to one another and still holding hands, simultaneously breathe a huge sigh of relief and relax, just as Mr H continues:

‘However….’

NOOOOO!!!!!! STOP THERE, WE DON’T WANT HOWEVER, HOWEVER IS THE VERY LAST WORD WE WANT TO HEAR.

We do not want a conjunctive adverb here, Mr H, thank you very much; we just want a nice plain full stop, if that’s not too much trouble.

But it’s useless.

With the reappearance of Vanessa, and Mr H’s wanton use of the conjunctive adverb ‘however’, my brain is now taking in two signals that something else bad is now looming on the horizon, that something wicked this way comes..

It only remains to find out just how bad the new bad news is going to be.

To be continued...