Tuesday, June 11, 2013

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 21st 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.

5 comments:

  1. I am so glad it is "done".. I am honored to have been able to follow you on this journey and hope that you will continue some form of blog.. Life in Hammersmith... Thoughts from the Towers...... I am sure you can think of a moniker more jazzy... So glad the trip to the Barn was nice.. Hope there are some pictures for us to see. I was just thinking recently that I hoped you would post after the trip. Best wishes always
    v

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  2. Dear Caroline,

    I've written - or tried to write - twice now, but the cyber imps keep snatching it away. Perhaps is just as well, I was too emotional to summon up the appropriate words. Still am.
    I walked away from my computer, tried to calm myself. Didn't work. I am still swiping at tears, still...what? Angry?

    See, I know you've completed your treatment - I get that - but I so want you to be truly done, to be out of pain. And you aren't. And I'm so sorry.
    And there aren't any cyber imps waiting in the sidelines to come snatch it all away - would that there were - and there's nothing I can do to help you - would that I could...

    But I can be honest: I can tell you I'm angry, admit I'm bone-weary of this whole thing, this Cancer Treatment Reality both you and I have been stumbling through for what seems eternity; I can tell you what I wish I could do is come knock on your door, take your hand, sit with you, talk with you, no pretenses in the room; cry with you, wail like a couple of demented banshees if we feel like it, kick a metaphorical rock or two, blow our noses, smile at each other, reassure each other - and ourselves - that it truly IS almost over; we can do this, we can finish it, 'this, too, shall pass'. And it's okay to fall apart a bit, even at the end, because it HAS all been 'a bit much'.

    I'm sorry, my friend. I wish...

    xxx Jen


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  3. CarFo, I want to echo Vicki's sentiments. I've followed you since I found The Camel Barn Library and I find your writing very enjoyable to read. The more-recent subject matter may leave something to be desired, but the writing is always excellent. I'd really like to read about your daily shopping or swimming regime instead of chemo and radiation... Thoughts and prayers for a quick return to health and normalcy.

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  4. Caroline thanks for this post. I'd been imagining how you've been. Picturing you in Ayvalik. Considered asking you for an update but then thought better of bothering-hopeful that you would, in time let us all know how things are coming along.

    And I see you still had the unfinished business of the radiation. (Now finished-thank God) It makes me angry to thing of how that nurse behaved-and how she just handed off a stack of bandages to leave it to you to figure out how to go about it. That is unacceptable. But so much IS unacceptable-and in those situations one just carries on. I always wonder how people like that got to be so wretched. I want to understand.

    I am sorry you are experiencing those unpleasant side effects of radiation-truly-but you are DONE. Done. Wow! I am so very happy for you.

    I would love nothing more than to open my inbox one day to find an email/blog post with a picture of you and R dancing at the Bruce Springsteen concert! LoveXO

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  5. I'm a stranger, but have been reading, and wishing you well, and am so impressed with how brave you are. My mother had a double mastectomy/chemo four years ago. No radiation, because of the mastectomy, but watching her go through chemo was horrible. Many similar experiences (bad ones) with clueless doctors and nurses and obnoxious staff at hospitals...really, insult to injury. Thrilled you are finished with radiation, wishing you the best, and thinking of you, always. Brave, brave girl. I hope you keep writing.

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