On Richmond Hill

Day 106  Intermezzo - a final romantic inerlude

General status update

Anxiety level/insane euphoria (+/- 1-10,000): A week from now, it’ll be Dexy Time again!! Yay!! Oh, and there’ll be the final dose of  chemo as well, obvs.

Nausea demon: he’s been doing a little shopping to prepare for his monastic retreat; I think he’s going to find it hellish cold this weekend in those open-toed sandals.

Despair Demon: He’s deeply depressed because the Chemo Muse has been ignoring him, and I find myself trying to cheer him up. WHAT IS WRONG WITH THIS PICTURE?

Chemo Muse: She’s had me hard at it today – see below. She keeps talking about completing narrative arcs in the limited time we’ve got left..

Chemo Brian: just chilling on the sofa with his little woolly rat friend, Chemo Rat Brian.

State of mind: nostalgic

Hair: it’s seen better days, frankly, but our current focus is simply on attachedness, and it’s still scoring 10 out 10 on that front.

Previously on Chemo Nights: After meeting via a mutual friend on Twitter during a discussion about procrastination, R and I bonded deeply over our mutual love of the London Review of Books and  have conducted a prolonged epistolary and telephonic romance, whilst living 2,000 miles apart. After 8 months I have finally agreed to fly back to London from my home in the Aegean to meet R, but am convinced that this is all going to end in tears when our virtual romance is exposed to the cruel light of day. Now read on….

The view from Richmond Hill over the River Thames, winding its way through a sylvan landscape essentially unchanged since it was laid out in the 18^th century, is one of the most beautiful in London. The town of Richmond was founded in the early 16th Century, after Henry VII built Richmond Palace, and during the 18th Century, an Arcadia was re-created along the Thames below Richmond Hill. Royal and aristocratic palaces were constructed, with gardens and parks, and linked by a series of avenues, set within a framework of meadow and woodland.

It is the only view in England to be protected by an Act of Parliament:

The Richmond, Ham and Petersham Open Spaces Act was passed in 1902, after a campaign by local people against development in the area, to protect the land on and below Richmond Hill and thus preserve the fine foreground views to the west and south. Immortalised in paintings by Sir Joshua Reynolds and J.M.W. Turner, it was described by Sir Walter Scott as "an unrivalled landscape". The Terrace Walk, laid out near the top of the hill in the 18th century, gives a panoramic view over south-west London, taking in the river Thames, royal parks and palaces.

All very fine and all very touristy, I can hear you thinking, but what’s that got to do with the price of fish?

Be patient, dear Reader, I’m coming to that….

The Terrace Walk on the top of Richmond Hill is one of my favourite places in the world to walk, or just to sit and look at the stupendous view; there are dozens of comfortable wooden benches there, each one bearing a small plaque with the name of someone else who used to love to sit on Richmond Hill and look at the view, and in whose memory the bench was donated. When I die, I’d like to be remembered with a bench on Richmond Hill, too (n.b. I’m not being morbid - I have an excellent prognosis, remember).

I know this place so well because my parents own a flat in one of the roads of Victorian and Edwardian houses that cover the more gently sloping ground on the back of Richmond Hill, and I stayed there frequently on visits back to the UK during the five years I was living in Turkey. It’s only a five minute walk from the flat up to the Terrace Walk, and I would spend some time there every day without fail; it’s a place I became addicted to.

So when it came to choosing somewhere for R and I to meet in real life for the very first time (after an on-line virtual courtship lasting for 8 months, with no opportunity to meet as we were living 2,000 miles apart), the Terrace at the top of Richmond Hill seemed the perfect venue: if the whole thing turned out to be a complete disaster, and we found ourselves without a word to say to one another, we could always just look at the view…

I arrived back in the UK for the first time in 3 years in the early hours of the morning on Sunday, March 27^th, 2011; I spent much of that day wandering around Richmond in a daze, in deep culture shock after spending such a long period of time living in a converted camel barn in Ayvalik, a very small Ottoman Greek town, on the north Aegean coast of Turkey, 170km from the nearest big city.

No cobbled streets, no head-scarved neighbours sitting gossiping endlessly on their doorsteps, no deliveries of logs by horse and cart, no mutant chickens escaping yet again from my neighbour’s garden; no competing muezzins calling the faithful to prayer from the minarets that sit so oddly on the old Greek Orthodox churches converted into mosques; no exterior sofas for hot summer evenings, no goats, or packs of wild dogs; no ruined houses occupied by tribes of feral cats, no pide sellers hawking their wares at the top of their voices; no village ladies in baggy pantaloons sitting on street corners selling wild greens, or sour plums, or pomegranates, or buckets of ripe figs…

Much had changed since I last set foot in London, not least that Marks and Spencer were now selling something called ‘wasabi peas’, a truly splendid invention. Even the discovery of the amazing hot-yet-sweet taste sensation of the wasabi pea, though, could not distract me from a rising tide of panic about the following day’s meeting with R, which I was becoming more and more convinced would be a disaster of truly epic proportions.

I was too old for this, much too old for this and, more importantly, some years older than R. He professed not to be the slightest bit bothered by this, but it still bugged the hell out of me. And I wasn’t nearly thin enough and my hair looked awful and I didn’t have anything to wear. He would probably take one look at me and run screaming down the hill towards the river, and the last I would see of him would be a tiny figure in the far distance loping across Petersham Meadows, zigzagging from side to side to avoid the grazing cows….

Several purchases of new items of clothing later, I at least had an outfit, but still walked back up the hill to the flat enveloped in a deepening cloud of grim despair.

What had I been thinking, travelling 2,000 miles back to London to meet a strange man off the internet? OK, he was a Professor of Bioethics, and we had friends in common, and we had spent the last 8 months exchanging hundreds of emails and spending hours conversing on Skype, but he was still a Strange Man. My mother always told me not to talk to strange men, and I should have listened to her advice. I’d been perfectly happy on my own, I had a great life in Ayvalik, I had a LIBRARY, in a CAMEL BARN, for God’s sake, the library I’d always wanted, and a dog, and 3 cats, and lots of friends, wasn’t that enough?  Why come all this way and risk humiliation and rejection and a broken heart – hadn’t I already suffered enough for one lifetime?

There was going to be a long evening to get through alone, as R and I had arranged to meet at 10 o’clock on Monday morning - giving me Sunday to recover and regroup after the 15 hour journey from Ayvalik - and given the frame of mind I was in, there was only possible way to approach it: with a raid on MamaFo’s exceptionally well-stocked drinks cabinet.

One of my mother’s hobbies - before she retired to her eyrie in the Tramuntana Mountains of Mallorca to devote herself to Mediterranean gardening and the cultivation of the highest quality home-grown skunk - was collecting particularly fine bottles of eau de vie, brandy, aquavit and the like on her travels, and in the flat there were several large cupboards packed with a world class collection of such beverages, including my own favourite, Calvados.

In hindsight, dining solely on Calvados and wasabi peas was probably not a terrific idea, but I was much too agitated to contemplate eating anything more, or drinking any less.  The spasmodic texting to R of my growing existential despair may have been a bit of a strategic error, also. R did his best to cheer me up, from a distance, but I wasn’t in a mood to be cheered.

C: This is so hard, today has been very difficult for me. This is so not going to work. I don't think we should do this.

R: I’m sorry you’re feeling bad. I thought you wanted today to get your head together, and evidently you have, but not in the way I hoped.

C :  I’m too old and too fat for all this, and I have been drinking Calvados, and now I have a RED NOSE.

R:  For the record, I don’t believe you are fat or old or have a red nose.

C:  My nose always goes red, reindeer-like: cold or alcohol, never fails.

R:  Also for the record, I am balding, and round-shouldered, and have a slight stoop. I just want to meet you, to tell you how much I feel about you, and then you can tell me to f*** off.

C:  I am only upset because I am very, very nervous. When we meet, things will clarify. We are both a bundle of nerves right now.

R:  I want to be kind to you, to make you happy – even if we never meet again, to give you good memories.

C: You are going to be so disappointed – the Tatlim with the Luminous Nose.

R: I am meeting the woman who has stitched my heart back together, and made me happy for the first time in years....

C : I have made major inroads into the wasabi peas, not to mention the Calvados.

R: ...which makes you Venus Herself.

C : You do say the loveliest things…

And so to bed. It should have been a sleepless, anxiety-wrack’d night, but I’d drunk far too much Calvados for that.

This is the view looking up Richmond Hill, from the water meadows by the river, towards the Terrace Walk - you can see Jerry Hall's house on the second left at the top, although Mick's long gone now, obvs..

It seems hard to imagine now, having just lived through the coldest and snowiest March in living memory, but March and April 2011 were exceptionally warm and sunny; the next morning was quite blindingly beautiful and as I walked, very slowly, up Richmond Hill towards the Terrace and my awaiting doom (R having texted me to say he had already arrived ), the sun was blazing in a clear blue sky, birds were singing, the trees were covered in showers of blossom –everything, in short, was wildly, inappropriately cheerful.

I was carrying a satsuma – or, as they call them in Turkey, mandalins, or as R and I call them, mandolins – something which had become a bit of a theme between us (you had to be there, really), had a bit of a hangover, and was now focused with grim determination on just getting this dreadful, ill-omened event over with and then getting on with the rest of my life, possibly in a discalced Carmelite convent in Ayacucho, Peru, if they’d have me. There would be llamas, and colourful ethnic knitwear, and distant, pleasing, mountain prospects whichever way you looked…

Looking from the end of the terrace I can see, some fifty yards distant, a man sitting on one of the benches, reading. He is sitting opposite the telescopes and the viewing platform, which is where we agreed to meet, so that must be R.

Oh my God, it’s HIM. But still at a safe distance. The ball of nervousness in my stomach expands and there are a thousand butterflies in there, fighting madly to get out.  

I start walking, even more slowly now, towards him. It’s 10 a.m. and there’s no one else much around, except a tramp, an old-fashioned, proper tramp, bushy of beard and wild of hair, clad in layers of slightly shredded garments, stretched out full length on his side on one of the benches, propped up on one elbow, and smoking a roll-up with an insouciant air. As I pass him I wonder if he has been hired by Richmond Council to add picturesqueness to the scene as the official Tramp of Richmond Hill, like the hermits 18^th century aristocrats used to employ to people their grottoes and follies.

I’m still 25 yards away when R looks up and sees me, and then he puts down his book and gets up from the bench, unfolding himself into a very tall person indeed, well over six foot, a tall, thin man with greying auburn hair and a strong handsome face on which there is suddenly the biggest smile I have ever seen. I find myself beaming back, and when we are five yards apart we both say ‘Hello, tatlim’ and then he takes me in his arms and holds me close in what is possibly the longest hug the world, and certainly the tramp, has ever seen.

And now he is real and there, after all this time, and I can feel his mouth against my hair and the smell of his skin and it is R,  just R , exactly the way he ought to be, to smell, to feel.

‘Here you are’ he says ‘here you are at last – I’ve been waiting so long’, and he’s not talking about the twenty minutes he’s been sitting on Richmond Hill.

‘There you are’ I say ‘there you are. You’re real. You’re here.’

And then he kissed me.

We never did get to look at the view.

Postscript: That meeting on Richmond Hill was two years ago today. We spent much of the next 3 weeks together, and then I came back to London again for another 6 weeks during July and August. R and I both knew pretty much right from the start that we wanted to make a life together, however difficult that might be to arrange, and I flew back to London for the third time on October 4^th, 2011, with 2 suitcases (‘on a wing and a prayer’ as BigSisFo put it, rolling her eyes in disbelief at my folly). I wasn’t planning to move in with R straight away, but he dragged me out of Richmond and into his flat in Hammersmith within 24 hours of arrival, and we’ve now been living together for 18 months. It’s been very difficult in many ways, some of which I can’t talk about here; it hasn’t just been the cancer we’ve had to deal with. All of that notwithstanding, it’s been the happiest two years of my life.

And now we share just the one subscription to the London Review of Books, and we keep them in an old wooden toolbox I brought back with me from Ayvalik…

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.

Running on Empty

Day 107

General status update

The Chemo Demons are all keeping well away from me because they don’t want to pick up this bug, except Chemo Brian, of course. who never catches anything anyway because viruses and bacteria stand no chance against the impenetrable fug of wacky baccy smoke that permanently surrounds him.

Anxiety level/insane euphoria: God, I’m missing the Dexys…

State of mind: guilty because I have been failing Cancer 101 again and displaying a Bad Attitude and making everyone worried about me, but also defiant because a person can only stand so much.

Hair: much like a small, dishevelled haystack, at the moment.

Well, that’ll teach me to throw the toys out of my pram in public: half an hour after I publish the little tantrum that was yesterday’s blog post R comes into the bedroom - whither I have retired with Paddy Leigh-Fermour in a state of high dudgeon - holds out the phone and says ‘It’s Becky’.

Ah.

F***! F***! How stupid was I to write that I’ve got an infection but I’m not going to go to the hospital, SO THERE?

WHAT WAS I THINKING?

They’re probably going to stage an intervention…

  

Matron Becky – aka the Mother Goddess and World Mum, in all her ineffable omnipotence, omnipresence and omniscience –  has been alerted to the fact that I am behaving badly, of course she has: it seems she was in the middle of reading the previous day’s blog post when the new one suddenly popped up and informed her that I am down with another infection and Acting Out.

She is deeply unamused.

A difficult conversation ensues; it’s hard to hold your own when you’re severely under the weather, mentally and physically exhausted, and have got the Chemo Matron/World Mum/Mother Goddess exuding gentle disapproval at you from the other end of the phone because you are self-evidently not just being a non-compliant patient, but behaving like an idiot in such a way as to endanger yourself and cause a great deal of worry to your loved ones. Although R is not in the room during this conversation, I can sense him cheering from the side-lines, and not for me.

Matron Becky reminds me that I am in the vulnerable, highly immuno-suppressed week mid-way through my fifth dose of chemo, and that with five doses of FEC now inside me that is a considerable build-up of toxins inside my body, hence the all-pervading weakness even before the infection set in. Even with the Pegfilgastrim injection, at this point my immune system is on the floor, and with my temperature at 37.4 deg she thinks it would be advisable for me to go down to the hospital to get my bloods done, so they can see how my neutrophils are doing, and whether the doctors should give them some more ammo to fight off the infection. She offers to call ahead so they will be expecting me.

This suggestion fills me with horror.

I know everything she says is important and right, yet….

It is one of the coldest nights of the year and, although I’m feeling truly rotten, and so very, very tired, I’m very cosy and comfortable here with Chemo Brian and my knitted throw, a nest of cushions and a heap of books and magazines. R couldn’t come with me to the hospital, as his little boy is staying with us this week, so a trip to the hospital would involve several hours alone in the A & E: blood tests, then a long wait for the results, needles, insertion of cannulas - my PICC line being no more - and a lengthy infusion of IV antibiotics while waiting for the blood test results because they automatically do that as a precaution against neutropenic sepsis.

I’m sorry, but I can’t face all that again tonight, I just can’t.

Right now, I can’t endure any more invasive physical procedures unless my life literally depends on it – this is the point to which my growing aversion to hospitals and medical treatment, and my general psychological deterioration, has now brought me. I’m really not being deliberately difficult, but both body and mind have had enough. If I go and spend another unutterably bleak and unpleasant few hours in the hospital now, I may end up just breaking down completely, like I started to do at the radiotherapy planning meeting last week.

I’ve been through the A&E routine before, and I’m not going there again unless it is absolutely necessary – as evidenced by a serious fever, which I haven’t yet got. In the end I take my temperature again whilst still on the phone to Becky and am deeply relieved to see that it has gone down to 37.2 degrees.

For Becky, this is not the point, of course; my temperature could start going back up at any moment and I am a very weak immuno-suppressed chemo patient with an infection who would be much, much better off down at the hospital getting my neutrophils checked out and further prophylactic measures put in place.

And as far as my body is concerned she is right, but my soul is no longer able to go along with the programme.

In the end, no doubt picking up on the fact that I am right at the end of my psychological tether, Matron Becky agrees that I can stay at home for the time being, on condition that if my temperature rises above 37.5 deg, or if I start to feel physically worse, then I will go to the hospital straight away. Deeply relieved, I put the phone down and curl back up in my nest of cushions and throws.

Not going nowhere, no, not me.

I'm running on empty, now.

Postscript, 24 hours later: the virus is continuing to rampage through me, I’m aching, coughing horribly, and am so weak I can barely stand up, but my temperature has stayed below 37.5 deg, so as long as I rest for the next few days I should be just fine without further medical intervention (inshallah/touch wood/God willing). At this stage of the game, I truly believe that Chemo Brian is the best medicine…

Viral overload

Day 106 

General status update

Not playing any more

For the last two days I’ve been feeling increasingly unwell and determinedly putting it down to being in the very weak and feeble part of the chemo cycle, plus the incremental effect of now being in my fifth cycle of FEC, and thus very full of accumulated poison, but this afternoon I have been forced to acknowledge that I am feeling unwell because I am going down with a respiratory infection, and feeling worse by the minute.

Oh God, here we go again…. this will be my third infection during the 5 chemo cycles so far, and let us hope that it will be containable, like the previous two, and not actually put me back in hospital, as has happened to so many of my Cyber Chemo Buddies over the last few months, including one only yesterday. The good news is that I received an injection of Pegfilgastrim, the immune system-boosting drug, after FEC5 10 days ago; this means that although we are now at the point of the chemo cycle where my immune system has been heavily suppressed by the chemo, which kills all the neutrophils, my neutrophil count won’t be as low as it would otherwise have been.

Hopefully my body, with the help of the Pegfilgastrim, will be able to fight off this infection, and not let it fast forward into neutropenic sepsis and a hospital admission, or even another trip to the A & E for IV drugs, because I am just too bloody tired for all that again now, OK?

Enough already.

I’ve had it with chemo, and infections, and no immune system, and emergencies and A&E departments and injections and IV infusions and hot and cold running doctors.

I am so exhausted, physically and mentally, after 6 months of cancer and 15 weeks of chemo, and I just do not want to do it any more.

Any of it.

You’re meant to call the hospital if your temperature goes above 37.5 deg, and go straight to A & E if it hits 38.0, but I’ve decided to ignore all that this time round. I’m staying put and not doing anything at all unless it gets to be well over 38.0 deg. (it’s 37.4 at the moment). The last two infections didn’t kill me, and my working hypothesis is that this one won’t either. And if Jesus does decide that this is the week he wants to take me for a sunbeam, well then that's just too bloody bad.

Hey,  immune system, this is just a run of the mill respiratory virus, not Ebola: so please put that very expensive Pegfilgastrim injection to good use, DEAL WITH IT on your own, and don’t bother me any further.

I'm done.

I’m going to lie down on the sofa again now with Chemo Brian and Artemis Cooper's new biography of Patrick Leigh-Fermor and I do not wish to be disturbed.

Got that?

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...

Demon Lovers

Day 104 

General status update

Fatigue/weakness: it’s that part of the chemo cycle now – the second week is essentially no immune system and no strength - and by the end of quite an energetic day out yesterday, I was practically on my knees. Climbing up the steps to the exit at Hammersmith Tube Station, which in normal times I would trot up at a rapid clip, was almost too much for me last night. I clung on to the railing, and R took my other arm, and I went up very, very slowly, one step at a time, and had to rest at the top. Yes, you’re right, I should have found the lift and gone up in that, but it didn’t occur to me that walking up a flight of stairs was going to prove impossible without assistance. I just forget that the chemo is still in charge of my body for the moment.

Today I’m very, very weak and lying down, mostly. As Matron Becky warned me it would, the fatigue and weakness is increasing every cycle. I’ve still got mental energy but my body has taken a big hammering from the chemo drugs now, after 15 weeks, and there’s still more to come. Next time, I’ll find the lift. And in 5 weeks’ time I’ll be in the swimming pool, starting to make myself strong again.

Chemo Brian: we’re having a lovely day on the sofa together, which is by far the best thing to be doing in this miserably inclement weather, anyway. Outside there is a biting wind, and driving sleet. Lovely. Like me, Chemo Brian was completely blown away by the David Bowie exhibition yesterday, and we have been happily discussing all the best bits, and making plans to go again.

Nausea demon: he poured out his heart to me about his feelings for the Chemo Muse, and her apparent preference for the Despair Demon, at 5am this morning over tea, toast and my usual panoply of anti-emetic and other drugs. I feel for the poor boy, I really do, but I can’t help feeling that the Chemo Muse is way out of his league – she is a heavy duty demonic power, outranks him considerably in the infernal hierarchy, and would eat him up for breakfast. The Nausea Demon is a well-meaning but low-ranking chap, doing a useful job that affects his victims essentially on the physical level: the effects of what he does can be horrible, but he doesn’t get to mess with people’s minds, or leave long-lasting effects.

The Despair Demon, however, is a Very Nasty Dude Indeed: hugely powerful (with influence extending way beyond the area of chemotherapy treatment), he crawls inside people’s souls when they’re at their very lowest, and makes them feel incapable of continuing their existence. He is the Blotter Out of Hope, the voice in your head on a sleepless night at 3am which reminds you of all the ways in which you have failed, and will continue to fail, and makes you reconfigure your view of everything about your life to the most negative possible perspective.

He’s perfectly charming off duty, mind, and seems prima facie a much better match for the Chemo Muse: they could be a serious Power Couple, the Posh and Becks of the Chemo Demonology, no question.

this is  one of the milder versions of  what you get if you put the expression 'demon lovers' into Google images

Anxiety level/insane euphoria (+/- 1-10,000): down to one steroid table a day now, but still pretty speedy. Am so going to miss the Dexys once the chemo is done...

State of mind: Excellent. We had such a wonderful today yesterday, there’s only one more chemo to go, we are making plans of various kinds, soon the cancer will no longer own me.

Hair: I think it may have thinned out a bit more than I’d realised, because I put it in a pony-tail today and it seemed somehow – smaller. But you honestly can’t see any difference, otherwise. Given that we’re now 15 weeks in, and there’s only 4 1/2 more weeks of chemo to go, it is starting to look as if it’s going to make it through relatively unscathed. Who would have thought it? In the interests of full disclosure, I should reveal that whilst my eyebrows and lashes have also remained intact, there is now no hair at all on my arms or legs (although there wasn’t much to start with) and my nether regions have acquired what can only be described as a Chemo Brazilian. 

MamaFo: she rang earlier from her fortified redoubt in the Tramuntana Mountains to say how pleased she was we had enjoyed the David Bowie exhibition so much, and to give me her views on the importance of Bowie’s influence on popular culture; she even said she was minded to leave her mountain top eyrie for the first time in years and come back to London to attend the exhibition herself, which astonished me, since she has refused to fly for several years now because of her objections to aggressive airport security and not being allowed to smoke.

She added that it was also good to hear that the drugs clearly enhanced my appreciation of the audio-visual spectacular, which would perhaps make me realise that I have previously been unnecessarily uptight about the question  of recreational drug use. I agreed that it has been an education, and I am now feeling a whole lot more flexible in that area. 

NB:  for newer readers:  MamaFo is 82 and a real person, not one of the voices in my head. She just SOUNDS unreal. She is the defining example of the expression ‘you couldn’t make it up’.

Very weak today – see above – so just waving to you from the sofa where I am ensconced with Chemo Brian, my new knitted throw, and a pile of books and magazines. BTW I have just started reading the short stories of Edith Pearlman, kindly given to me by R after I mentioned how ecstatically they had been reviewed everywhere, and it turns out they have been ecstatically reviewed for a reason: Edith Pearlman is beyond brilliant.

Have a good weekend…

Starman

Day 103

General status update

FEC5, day 9:

Anxiety level/insane euphoria (+/- 1-10,000): the steroids are now being tapered off, and I’m slowly coming down to earth – but it’s been a lovely ride. I’m beginning to wonder if I may have been short-sighted in spending my whole life eschewing the use of recreational drugs.

Mouth: very sore this cycle – the steroids can do a lot, but they can’t stop the FEC giving me mouth ulcers, unfortunately. With this painful and hazardous combo of ubiquitous ulcers and the bad tooth, the yoghurt-based element of my diet has been increasing rapidly.

Chemo Muse: you know how she has the whole snaky hair thing going on, what with being the love child of Chemosh, God of the Moabites, and Medusa? So we’re all having dinner last night, and she’s in terrifically good, even glittering form at the moment, what with all the extra Dexys: she’s holding court and being very funny indeed, and she’s kind of flicking her hair about as she talks, it’s quite mesmerising – flick, flick, the snaky locks writhing around, sometimes towards the Despair Demon, sometimes towards the Nausea Demon – almost as if she were flirting outrageously, and playing them off against each other… Oh. My. God.

Chemo Brian: completely oblivious to all the Unresolved Sexual Tension, bless him – he couldn’t see a sexual undercurrent if it came up and bit him on the ankle. The drugs he’s spent his life doing were not performance-enhancing ones, and I fear he may now be having problems with his prostate.

PICC line (deceased): at night its lonely ghost wails at the window, in the manner of Kate Bush: ‘How could you leave me when I needed to possess you? Caroline, it's me, Cathy, I've come home, I'm so cold, let me in-a-your-window.’

State of mind: you can probably judge that for yourself.

Hair: ignored, overshadowed, depressed, but still there.

It is a truth universally acknowledged that when you put away in a safe place something important, something you are going to need in a few weeks from now, and must not on any account mislay

- like, just for the sake of argument, a treasured invitation to the Members’ Preview on Friday 22^nd March of the much-anticipated new David Bowie Exhibition at the Victoria & Albert Museum, which is going to be the biggest blockbuster exhibition of the year in London in 2013 -

then you will be sure to forget where you put it.

Yes, it is in a safe place, but a place so very safe and out of the way that you are completely unable to find it again.

I blame Chemo Brian for this.

I do not panic. I stay calm and take deep breaths. I KNOW that the invitation is here somewhere; the only problem is the other 11,967 pieces of paper, books, newspapers and magazines in this flat amongst which it must somewhere be lying. After consulting Twitter to identify the patron saint of Lost Things, I make invocations to St. Anthony of Padua and Ganesh, the Remover of Obstacles.

R has gone out to a meeting, and will be back in an hour. He is a big music buff, and so looking forward to this; today is a kind of special anniversary outing for us, followed by dinner out this evening, on a day when the chemo side effects are finally abating. It’s our big treat. If I can’t find the invitation, it will ruin everything.

It takes that whole hour, and going through every piece of paper in the flat, before I find it, right at the bottom of the last heap of papers, five minutes before R’s key turns in the door…

BUT NEVER MIND ABOUT ALL THAT,

THE BOWIE EXHIBITION IS

JUST

MIND-BLOWING!!!

It was just fantastic - the most extraordinary audio-visual experience EVER. And even better if you're on the strong drugs, like me. You're all wired up for sound in a head set, which tunes in to the music in whatever part of the exhibition you’re in, and the extraordinary costumes are all there in front of you as you watch him performing in them. 

And there are Voices in Your Head – although I'm used to that, obvs. At the end you're in a giant room with a 40' David Bowie singing Jean Genie to you. There are other people there, but it's like you're on stage with him in your own private concert. It doesn’t get better than that.

I LOVED IT SO MUCH.

I had to be physically dragged out of there finally by R - I would have had my Bowie concert go on all day. He wanted lunch. I am planning to go back at least 10 times. It is just AMAZING. And especially if you're on steroids.

Woooooh, WE CAN BE HEROES!

This video is wonderful - it's a live performance of Jean Genie from Top of the Pops in 1973, which was lost immediately afterwards, and only rediscovered in 2011.

Sister Morphine

Day 102

General status update

FEC5 - day 8

Anxiety level/insane euphoria (+/- 1-10,000): we’re adopting this category to allow for the violent mood swings engendered by the steroids. For the last few days I’ve been essentially bat-shit crazy – albeit very cheerfully so - but keeping on with the steroids has significantly decreased the power of the chemo side effects, and lowered my distress levels accordingly. Steroid dose now being reduced, so am starting to calm down, which will probably be a relief to Matron Becky, who was somewhat startled to have been elected World Mum/Mother Goddess yesterday, although she says she’s definitely going to put in for a pay rise.

Nausea demon: very morose over our 5am breakfast, and only had one bite of toast. Worried about him.

Chemo Muse: she sent me off to bed last night at 11pm, saying that I REALLY needed to get some rest now, and I mustn’t think about staying up all night writing again. Odd.

Despair Demon: there were noises coming from the airing cupboard last night, when I got up at 3am to get a glass of water – it seems he had company. Hmmm.

Chemo Brian: he’s really happy because when I popped into TKMaxx yesterday whilst waiting for a prescription to be sorted at Boots next door, I found the ultimate sofa comfort blanket – a huge, soft grey, chunky Argyll hand-knit cotton throw. You can never have enough throws, and I love it so much I fully intend to buried in this one, although not anytime soon, obvs.

PICC line: gone, but not forgotten

State of mind: Still Dexy-energised; no moping

Hair: there

  

Previously on Chemo Nights: it is the 4^th October, 2012, the day of the lumpectomy operation on my right breast. After a 7 1/2 hour wait for the operation, punctuated by some fairly deranged behaviour on my part, headed off by a kindly anaesthetist, the last thing I remember is having my pathetically inadequate veins insulted by another, less kindly, anaesthetist as he struggled to find an adequate venue for his cannula - now read on…..

A breast lumpectomy operation (or WLE – wide local excision), although a fairly major piece of surgery carried out under a general anaesthetic, is normally carried out as a day operation; once you have come round and had some time in the recovery room you can go home the same evening, all being well, and this is what is planned for me.

It doesn’t work out quite like that.

Although I reported to the hospital at 7.30am, my operation doesn’t take place until late afternoon, and I start swimming back into consciousness as I am being wheeled on a trolley into a ward where I will be staying overnight. And this is where my introduction to the awesome power of pharmaceuticals begins, because for the next 24 hours I am buoyed from the after-effects of the surgery on a wave of - presumably - morphine, blithely unaware of what will hit me once I get home.

There is a big dressing on my chest, but I am feeling perfectly fine and insist on R calling my mother and sister so I can tell them exactly how fine I am because they will be worried (I was, apparently, pretty much incoherent, but extremely cheerful). My surgeon, Mr H, pops in to check on me before going home and I greet him with a beaming smile. After R has gone, I bond with the other inhabitant of the ward, a woman called Sheila whose very complicated mastectomy was the operation before mine, and we sit in our beds chatting until the early hours of the morning, exchanging life stories in that extraordinarily intimate way you can do with complete strangers in adverse circumstances, particularly when you are completely off your face with drugs; every now and then we demand more tea and toast from the nurses who, at about 3am, gently suggest that it might be a good thing for us both to get a little rest now.

Early in the morning Mr H appears again for an informal check on me, before starting work for the day, and says I will be able to go home later in the morning.

Mr H’s aftercare, I have to say, is outstanding, and will remain so in the weeks that follow. Of all the breast surgeons in the world, I’m very glad he was mine. 

Later I receive the official ward round from his registrar, a very good-looking Croatian or Serbian who is flirting with the equally good-looking female doctor who accompanies him. Part of his general charm offensive is to describe us surgically battered female patients as ‘lovely ladies’ which, when you’ve just had your once lovely breast mutilated or removed, is rather adding insult to injury; however, he’s a nice bloke, and a good doctor, and I’m still high from the morphine, so I close my mouth without actually uttering the words ‘Don’t patronise me, you t***er’, which is the response which immediately springs to mind

I’m pronounced fit to go home and a couple of hours later, after the admin is all sorted and various drugs prescribed, am finally allowed to do so. The taxi delivers us back to our little eyrie in Gurkha Towers within ten minutes and R installs me on the sofa with books, magazines, and a range of refreshments.  I call a couple of anxious friends, and then start tweeting, saying that I am safely home, feeling fine, and we are now on to the ‘relaxing and recuperating on the sofa’ part of the proceedings. It’s just like BigSisFo said – having a general anaesthetic is no big deal, the operation has gone fine, and I should be up and about in no time.

I have absolutely no idea, not even an inkling, of what is about to hit me.