Rock, hard place, harder place..

Day 108  

General status update

Anxiety level/insane euphoria (+/- 1-10,000): the infection does not seem to be getting any worse, so with any luck my neutrophils should be fine again in 8 days’ time for my last dose of chemo, FEC6. Mind you, that was what I thought last time I got a respiratory infection, leading to a neutrophil plunge and FEC4 having to be delayed for a week. But there’s absolutely nothing I can do about it: my neutrophils either will or will not have recovered by next Wednesday, when the blood tests will be done. We’ve already established that eating lots of spinach won’t make any difference at all, so I’d better just stick to the hot toasted buttered crumpets, then. Good for calcium, buttered crumpets..

Nausea demon: Bizarrely, he has elected to spend the Easter period on a retreat at a Benedictine monastery in Sussex, not your typical demonic holiday destination. He’s been staying in his room a lot for the last couple of days, now he’s more or less off duty until FEC6, so I am no longer privy to his innermost thoughts over dawn breakfasts, and thus have no idea what led  to this new venture. I keep wondering if he TOLD them of his demonic er, ethnicity when he booked..

Chemo Muse: she’s been keeping me very, very busy today, and also outlining ambitious plans for our activities during FEC6, when we should have another big power surge, assuming they give me the extra Dexys again. She’s also been rather ostentatiously much too busy to pay any attention to the Despair Demon, but I ‘m thinking that’s probably just because she’s a Treat ‘Em Mean, Keep ‘Em Keen kind of girl, rather than her having gone off him already. He does look rather like David Beckham, after all, although with rather fewer tattoos.

Chemo Brian: He’s been so lovely for the last few days, while I’ve been  a) very under the weather and b)in demented refusenik non-compliant patient mode. He never judges me. He never says I have the Wrong Attitude. I LOVE HIM.

State of mind: Viking, Forties, Cromarty, Dogger, Fisher, German Bight

Icy Wind of Fear - in southeast, south-westerly, becoming cyclonic, 5-7. In northwest, westerly, veering north-westerly, 5 or 6.

Anxiety State- in north, slight, occasionally moderate later, rising.

Internal Weather - In north, snow showers. In south, snow showers.

Demented behaviour -  falling.

Previously on Chemo Nights: it is Monday, 22^nd October, 2012, and we have returned to the hospital to receive the pathology results. Mr H has given us the good news that the margins around the tumour were clear, but it seems there is some bad news to follow…now read on

‘However…’

Mr H pauses for a second and his mouth does a thing which is like the opposite of a smile. ‘Unfortunately, we did find something in your Sentinel Lymph Node. A micro-metastasis, very tiny, just a cluster of a few cells.’

‘Cancer cells?’

Stupid question, I know perfectly well that any use of the word ‘metastasis’ signifies spreading cancer cells, but there’s part of my brain which insists on having it spelled out in case there has been some kind of mistake – you always think there’s been some kind of mistake,

‘Yes, I’m afraid so. It indicates that the cancer was just starting to spread beyond its primary location in the tumour in your breast.’

R is holding my hand very, very tightly and the world has gone all blurry as I struggle to stay composed.

‘So what does this mean?’

‘Well, one micro-metastasis in the sentinel lymph node is the smallest possible indication of spread, and it’s quite possible that these are literally the first few cells that have made it into your lymph nodes or elsewhere. But we can’t be sure of that: it means that we need to think about some further treatment, in case there are any more cancer cells to be picked up, in your lymph nodes or anywhere else.’

My blood goes cold. 

Does he mean chemo? After what happened to my former husband, I have always sworn that I would never have chemotherapy – I know far too much about the horror of it all. For the last two decades, my position has been that I would literally rather die than have chemo.

‘What kind of treatment?’

‘In this situation there are several possibilities. One is to have the rest of the lymph nodes under your right arm removed – a complete Axillary Node Clearance. Alternatively, you could have radiotherapy on your armpit – on your lymph nodes, as well as on your breast. The third option, which is the one I would recommend, is a course of chemotherapy.’

These are words I have spent my whole adult life not wanting to hear, and never expecting to hear, coming as I do from a family that doesn’t do cancer. And even now, with cancer, I still haven’t been expecting to hear them because after the biopsy the doctors seemed pretty sure it hadn’t spread, and that all I would need was the lumpectomy and then some radiotherapy. No chemo.

  

I sit there in shocked silence; there is screaming going on, but only in the inside of my head. My skull is the echo chamber for a silent howl of pain and fear.

NO!!NOTCHEMO!!NO!!!THEYPROMISEDMENOCHEMO!!

They didn’t actually promise me no chemo, of course, because they can’t do that, but they thought it was unlikely. Once again, I have been unlucky. Maybe if I had discovered the lump a couple of months before, the micro-metastasis wouldn’t have been there; with no evidence of the cancer spreading, I would have been home free with the lumpectomy and radiotherapy combo.

But I didn’t discover the lump a couple of months before, did I, because I wasn’t paying attention, and hadn’t yet been for my first mammogram, because I didn’t think that breast cancer would ever happen to me. I had other things to worry about at the time.

A few years ago, they didn’t have the technology to find micro-metastases, so in this sense I should count myself lucky; it’s much better to know this now, that some cancer cells had already got away, when you can actually do something about it, than for it to come back and bite you in three years’ time, with lots of happy little colonies of cancer cells having already set up their own city states in the dark recesses of your lungs or your spine.

Yes, it’s a good thing to know about the micro-metastasis, I need to get that into my head. It’s been a hideous and painful shock, but it’s much better to know than not. The treatment, whichever it is, will be nasty: either more surgery, for a full axillary node clearance (i.e. cutting out all the lymph nodes from under my arm), or more radiotherapy on my armpit, both of which options may have long-lasting damaging physical effects, or..... chemotherapy treatment, my worst nightmare.

It’s my choice, and it’s one I need to go home and research properly, and think long and hard about, knowing that each of the options is both horrible, and physically damaging, in its own way. Do you remember that stupid game you play as kids: would you rather be deaf, dumb or blind? That’s a bit what this seems like – I’ve got to work out somehow which, of three bad options, is going to be the least bad for me.

As we leave the hospital and walk back up the Fulham Palace Road, still reeling from the shock, both struggling to incorporate this new element into our ‘story-of-the–cancer-so-far’, my mind stops trying to assimilate the news in a positive fashion and wanders off again onto the Goa escape plan, where it is blue and shiny and peaceful and no one is trying to do unpleasant things to me.

Do I really need any more treatment? Can I bear any more treatment? I can always just stop participating, no one can make me have chemo, or any of the other stuff. I can always JUST STOP.

I don’t voice any of this to R , of course. That will come later.