The Grim Reaper pops in for a nightcap

General status update

Radiotherapy, day 39 – come back chemo, all is forgiven! 

Lungs: looking likely to get me before the cancer does, right now.

Radiation burns: slowly starting to heal after two weeks of hell.

Nausea demon: Oh god, I miss him – I miss him SO much. Nausea schmausea: at least he didn’t burn me or make me cough uncontrollably for days on end. And he was very sweet-natured, really.

Anxiety level/insane euphoria (+/- 1-10,000): someone give me some more Dexys – PLEASE. Even if it does turn me into an American football player – I DON’T CARE. Prednisone is good for my lungs but it DOESN’T MAKE ME HAPPY.

Despair Demon: he’s been trying to make our liaison permanent. Fighting him off as best as I can in my severely weakened physical and psychological condition.

Chemo Muse: telling me firmly that the only way now is UP – through reapplication to writing, since swimming is off the agenda until the burns have all healed and my lungs have recovered.

Chemo Brian: looking rather anxious, frankly.

State of mind: calm, resigned to my fate. Ready for whatever comes next. Hopefully just breakfast, but this IS the darkest hour before the dawn.

It’s 4am, and the Grim Reaper is sitting on the sofa with Chemo Brian, drinking the last of R’s Laphroaig. Sorry, R.

I’m lying here listening to the increasingly alarming noises in my lungs – always my weakest point, cancer treatments always get you at your weakest point – and contemplating the Three Last Things which, in my case, are likely to be a glass of Armagnac, a can of ice cold diet Coke, and a packet of Maltesers.

It’s been a bugger of a week, beginning with the continuing torment of the radiation burns, which has been so bad that at first I didn’t really notice the coughing.

Until I was coughing so much, that is, that I was choking and we had to go the A & E, where I was admitted and put on a nebuliser to pump steroids into my lungs. That was Friday morning, and I spent the day in hospital being treated before being released back into the wild clutching a big party bag of more steroids. The oncologists are divided as to whether this is a condition caused by the radiotherapy - radiation pneumonitis – or simply an asthma exacerbation in my generally weakened, immune-suppressed state, but it doesn’t really matter what the cause is, as the treatment is the same in either case: my lungs are severely inflamed and require massive doses of steroids to try and calm it all down before my airways close up entirely and I cough myself to death. 

Literally.

The other danger is if it wakes up some dormant bacteria and develops into pneumonia.

I spent the whole of Friday night awake and still coughing, so the treatment didn’t seem to be working, but during the course of Saturday the coughing became slightly less incessant. Now, though, at 4.30 am on Sunday morning, my lungs seem to be talking amongst themselves, and they are NOT HAPPY. I’m not coughing quite so much, but from inside my chest are coming crackling, hissing, wheezing sounds, the like of which I haven’t heard since I was in hospital in Ankara with pneumonia five years ago, an episode which nearly killed me.

Pneumonia is the patient’s friend, you know – it’s not an unpleasant way to go. And five years ago I was quite ready to go gently into that good night, having been on my own for a very, very long time after the death of my former husband (from a chemo-related lung infection – spooky, huh?). At that point I was very tired, quite loosely tethered to the world, and perfectly prepared to give up without a fight, but the Grim Reaper had an appointment in Samara with someone else that night, and passed me by. 

It’s different now, of course: there is R, who surrounds me with love, and I have so much to live for.

I suppose I’d better make a bit of an effort.

ps: remember, my current condition is NOT caused by the cancer - it's caused by the frigging treatment.

Nuclear half-life

General status update

Radiotherapy, day 29 

Radiation burn: getting worse before it gets better.

Nausea demon: he brought me a bunch of tulips the other day – he doesn’t like seeing me suffering like this. We talked nostalgically of all those dawn breakfasts together during chemo, when I was at least able to sit up.

Radiation demon: this is light duty for him, as he’s only torturing one breast rather than the whole body, so he’s got plenty of time to do Sudoku as well.

Anxiety level/insane euphoria (+/- 1-10,000): I would give anything for a few Dexys and a big surge of unnatural chemical exuberance right now, but unfortunately they don’t prescribe steroids for radiation burns.

Despair Demon: has set up camp in the airing cupboard once again, and keeps reminding me that this is my punishment for regarding radiotherapy as a mere formality after chemo. I wish he’d just sod off back to the Infernal Regions and leave me alone.

Chemo Muse: itching to get back to her new role as my swimming coach, and currently filling in the time by reading Ian Thorpe’s autobiography. She says I’m never going to be a champion swimmer because my feet just aren’t big enough.

Chemo Brian: very understanding about me spending so much time lying on the bed at the moment, rather than joining him in my usual position on the sofa.

State of mind: low – have to keep reminding myself that all this unpleasantness derives from the treatment, not the illness, and that soon it will be over. And then I can start taking the frigging Tamoxifen.

Legend relates that St. Lawrence, depicted above in a painting which may or may not be by Caravaggio, was martyred by being tied on top of an iron grill over a slow fire that roasted his flesh little by little.

I’m beginning to know exactly how he felt.

Since the final dose of radiation, a week ago, I have continued to burn, and the pain and discomfort on, under and around my breast has increased. It is red and raw and acutely painful, and as the layers of skin burn off I feel as if I am being very slowly flayed alive.

 This is a situation in which having a D cup breast is a distinct disadvantage, since the weight of the breast exacerbates the problem. The only way I can be comfortable is to lie down, breast bared, back slightly arched, with my arm extended above and behind my head on the bed at full stretch.

This improves things a great deal, and is said to be the best way to help the breast to heal, but it considerably limits my range of other activities. Aloe vera gel helps to cool and soothe it, but the breast will continue to burn for another week, apparently, as the radiation continues to work for two weeks after the treatment has finished. Only then will it begin to heal, and there is nothing else that can be done, so for now I must simply be patient and lie on the bed in the backstroke position, the swimming pool once again a distant dream.

I thought I had my life back, but I was wrong.

Going for the burn

General status update

Radiotherapy, day 15 

Radiation burn: nasty, painful and Very Red.

Fatigue/weakness: considerable, but different to chemo fatigue in a way I can’t quite describe.

.Anxiety level/insane euphoria (+/- 1-10,000): ratcheting up again, because after the radiotherapy comes Tamoxifen, the wonder drug with accompanying wondrous side effects. Allegedly.

Despair Demon: has made a sudden reappearance as I approach the end of radiotherapy treatment, mystifyingly.

Chemo Muse: she’s very happy that I’ve started writing again

Chemo Brian: he politely averts his eyes when I lie on the sofa topless to let the air soothe my irradiated breast

Nausea demon: having a whale of a time working for the Russian oligarch’s wife in Knightsbridge, but still comes round for a cup of tea from time to time. Says he is there if I need him once I start taking the Tamoxifen. He sends his love to you all.

State of mind: weary, very weary

I wake up this morning weeping, in pain because my nightie has adhered to the radiotherapy burns under my breast; pulling it off hurts like … well, you can imagine. I continue weeping at the hospital, while I am being nuked for the last time, then at the café where I go afterwards to have a cup of coffee and regroup, and then at the bank.

After that I give up and go home.

Yes, we’re back to the old routine: early morning unpleasantness and existential despair. My post-chemo trip to the Aegean was lovely, thank you, but it now seems a very long time ago. The morning after I got back from Ayvalik – Tuesday 21^st May - I was straight back to the hospital to start my radiotherapy treatment, consisting of 15 daily doses over 3 weeks.

The expression always used about radiotherapy is that after chemo it is ‘a walk in the park’, and that is broadly true: nothing can compare to the up-front, in your face horror of chemo. Radiotherapy, however, is nasty in its own way, and that nastiness sneaks up on you all of a sudden after the radiation has been working away quietly in your body for a couple of weeks: it’s what can very accurately be described as a slow burn.

The treatment itself is not at all unpleasant: before it starts there is a ‘radiotherapy planning meeting’, during which they put you in a big scanner, take lots of measurements to ensure you will be nuked in precisely the right spot, and put a couple of tiny, permanent tattoos on the breast. Then when you come for treatment every day the tattoos help them guide you into the right position under the radiotherapy machine. The radiation itself is entirely painless and lasts for only a few minutes: most of the time at each appointment is spent lying on the table whilst the radiologists make minute adjustments to your position: the whole process is reassuringly precise down to the last millimetre.

In case you’re wondering why I have to have radiotherapy after I’ve already had chemo, it is because the two treatments target different things: the chemo is a systemic treatment, to mop up any stray circulating tumour cells which might have escaped into my bloodstream, while the radiotherapy is a local treatment just on my right breast, to kill any cancer cells that might remain elsewhere in the breast tissue after the surgery to remove the tumour. You can’t have a lumpectomy and keep your breast without having radiotherapy: otherwise there would be a very high risk of the cancer recurring within the breast.

The main side effects of radiotherapy are what medics call ‘skin reaction’ and I call ‘burning’, and fatigue, both of which develop gradually as the radiation builds up in your system. The side effects peak two weeks after the last dose of radiation: you keep on cooking inside for some time after the treatment has finished.

I start to burn on day 10.

That evening, giving my breast its daily inspection in the bathroom mirror, I notice that the skin is turning red on its underside, close to the crease where the breast meets the rib-cage.  I have been applying aloe vera gel several times a day to protect the skin, on the advice of a friend who had recently done so and managed to get through her radiotherapy without burning, and am hoping for a similar result. I have also been spending a lot of time lying around topless, as air on the irradiated skin is meant to help. Over the next few days, however, the skin becomes redder and begins to feel very sore.

By Friday, day 13, it is quite painful and seems to be starting to blister, and I want a professional to take a look at it.  My cyber cancer buddies at other hospitals have been given assistance once their skin broke down, so I ask to see the radiotherapy nurse, who takes a look at my breast and then, essentially, tells me to stop wasting her time.

‘There is no MAGIC CREAM’ she says, with a certain amount of scorn in her voice, the words ‘you idiot’ hanging unspoken in the air. ‘Just keep on doing what you’re doing, and see how it is after the weekend.’

During the weekend the fatigue starts to set in as well, not helped by being unable to sleep very well because of the pain from the burn, and the difficulty of finding a comfortable position to lie in. Emotionally, I start to fray at the edges: three weeks of going to the hospital every day for treatment has taken its toll, and I can’t get very excited about my treatment finishing on Tuesday, because I know the radiation goes on working after the treatment is finished and that the burning may get worse: I imagine my breast turning into a horrible festering mass as I continue to burn.

Bu Tuesday morning I’m starting to melt down: it has been nine months of applied horribleness, with the hideous shock of diagnosis followed by surgery, chemotherapy and now radiotherapy: slashing, poisoning and burning. The assault on the body is constant, and it does horrible things to the mind. I’m just so very tired of it all now.

At the hospital, I lie down on the table for the final dose of radiation, and pull down the hospital gown to expose my breast. A trainee radiologist is in charge of putting me into position, and her supervisor tut-tuts, saying ‘Be careful! Look how sore the breast is’ and then to me ‘I think you should see the nurse afterwards to help you with that.’

‘I saw the nurse on Friday’ I say ‘and she told me to bugger off, more or less.’

‘We’ll find you another nurse, then,’ says the radiologist. ‘Your skin really needs looking at.’

Finally I am in exactly the right position; the radiologists all leave the room, the machine begins to click and whirr around my breast for the last time, and I start to cry, undone by the kindness of the radiologist. Tears stream down my face but I can’t lift my hand to brush them away: radiotherapy treatment is all about not moving one iota. Today’s soundtrack is vintage Motown, and as Marvin Gaye sings ‘I heard it through the grapevine’ I try desperately to stop my chest heaving as I cry, in case this makes the radiation go to the wrong place.

The radiologists come back in, and I am allowed to move again. As I sit up, clutching the hospital gown to my bosom, one of them says ‘Congratulations, Caroline, you’ve finished your treatm…..’ her voice trails off as she sees that I am in tears.

One of the radiologists hugs and comforts me, and another says ‘No! You should be HAPPY – you’ve finished all your treatment.’

‘I’m sorry’ I say ‘It’s just that it’s all been a bit much. Nine months of treatment. I am happy really – really I am.’

Somehow, I end up seeing the same nurse, and am tempted simply to leave, but my breast hurts too much. This time she is marginally more pleasant, concedes that the skin has now broken, cleans the wound and puts on a dressing.

I ask how long I should keep the dressing on.

‘That depends on how much it oozes’ she replies, and gives me a pile of dressings to take home.

Afterwards I walk up the Fulham Palace Road into Hammersmith to do some errands, but the tears continue to flow, so I give up and go home.

Treatment is over.

Yay.