Tuesday, 6 January 2015

90. The radiotherapy waiting room

Here we are. A new year. I hope you had a good Christmas period, whatever "good" means for you. Personally, I am glad to see the back of 2014. There was too much in it. Roll on 2015.

A month off work, a month off treatment, and I feel restored.

Well, perhaps restored is a bit misleading, as it conjures up images of my old sprightly self. There is a New Normal that isn't quite the same as the Old Normal. I can't fit as much life into a day as I used to, and I still feel constantly tired. But it's not half as bad as the acute post-chemo tiredness.

It's a bit like being a new parent.There comes a point when you realise that tiredness is here to stay, and you might as well get used to it, rather than lament your lost bright eyes and bushy tail. So you stop saying "I'm tired" when people ask you how you are, as tiredness is a given, no longer worth reporting. You start adding things into your day, baby in tow, because if you wait for full energy levels you never get anywhere.

I have gradually added more things into my day, cancer in tow, and lo and behold, I've kept going. Christmas as usual (I even stretched the day to Midnight Mass). Longer walks. Visiting friends. Cooking meals. Sewing (with a nice new bag to show for it). I even picked up my cello again, after months and months of silence. (No easy feat. I only started learning the cello a couple of years ago, with proper lessons and everything. That's not enough to develop muscle memory or play in tune. I will simply have to start again from the very beginning.)

"I feel as if I can do life again," I said to my husband this weekend.

Perhaps not quite as much of it, but still. I am ready to go back to work. So I was back at my desk yesterday morning, making a dent in the inevitable email backlog. I know I've got three weeks of radiotherapy (starting yesterday afternoon), but hey, how hard can that be? Surely, surely it can't be anywhere near as bad as the chemotherapy. 

That's the thing about physical health, or lack thereof. When things are looking up, you can't quite imagine how bad life has been. I think I would genuinely have forgotten how rotten the whole chemotherapy saga was, if I hadn't written it down in this blog. When I read some of my earlier posts, I think, Blimey, that sounds awful. Poor woman.

Now that I'm emerging from months and months of misery, I feel rather buoyant. I'm not going to let a course of radiotherapy knock me down.

Famous last words perhaps? We'll see.

My husband thought he ought to come along to my first radiotherapy session ("I should at least see what you're going through") but he had a funeral to go to, and in any case, I didn't feel the need to be accompanied. I was pretty sure husbands aren't allowed into the radiotherapy room (once I got there, I saw patients going in whilst their other halves were left behind in the waiting room). I don't mind going alone.

I decided to walk to the Royal Marsden Hospital (even if I have to take the bus back). It takes a good hour, but that will be excellent training for my Moon Walk.

You see, my daily trips to the hospital will not be a treatment programme. It's a fitness regime.

You could call that Positive Re-Branding.

So off I set, with my newly stitched bag around my shoulder. I've thought it out carefully, the bag design. There's an iPod sized pouch on the shoulder strap so I'm crossing the Thames to the sound of Bach Favourite Cantatas.

I suddenly remember that I have left Owl behind.

Perhaps it's another sign that I am not really engaging with this whole radiotherapy business. Cancer is so 2014: I am done with it. Owl, too, belongs to a different era.

I arrive at the radiotherapy department with my bright eyes and bushy tail restored.

The staff are lovely. Including the receptionist.

Either that first day was just bad luck, or I am somehow a different patient (one that manages to hold onto her name), or the staff have read about it on my blog.

Or perhaps they've had communication training? There was a leaflet up on the wall about communication training for all staff, and could patients please let so-and-so know about their experiences, for learning purposes. I contemplated briefly whether to send so-and-so the link to blogpost 85, but dismissed it. Perhaps I'll send it at the end of my treatment here. As a patient, I have come to realise, you feel too vulnerable and dependent to speak the truth to just anyone. You never know: there may be consequences.

In any case, the receptionist tells me that her name is Sue*, and that I'll be seeing her every day, just come and report to her, and she'll tell me where to go, even though it will be the same place each time, and this is where it is, and there's the toilet, and over there is the free hot chocolate. Any questions, just ask.

Marvellous. Although after all those explanations, I am devoid of questions.

Waiting for my turn on the machine, a lovely radiotherapist takes me into a small room for the standard question-and-answer session.

Nowadays, at the slightest hint of Could you just... I reel it all off: Irene Tuffrey, First Line of Address, Sixteen-Nine-SixtyThree. It always makes them smile, and it speeds things up no end.

Her explanations are excellent and detailed. You go on the machine, we'll be putting you in exactly the same position as you were when you came in for your planning session, that may take some time, we'll be talking over your head, not being rude or anything, that's just what we do, then we'll go out and you'll hear a beeping noise, don't worry, it's just the noise it makes to show that we've left the room...

On it goes. There will be no surprises later on, except perhaps for the rather nice view of the sky through some huge palm trees, projected onto the ceiling above the radiotherapy machine. I've always wondered why hospital ceilings look so much more awful than the walls, when it's the ceiling you'll be looking at.

My reality check comes when I'm back in the small waiting area and a man in his sixties (broad guess) shuffles in with what must be his wife.

The lovely radiotherapist comes out to greet them. "How are you?" she asks him, and with that hazardous question she manages to convey not only that she knows him and genuinely wants to know his answer, but also that she can cope with the answer.

I know the possible effect of such a question when you're feeling vulnerable. Oh, I do. And yes, there he goes.

"I'm so weak," he says with an almost imperceptible shake of his head, and I can see his face crumpling. The women's arms form a quick barrier around him, "You've done so well, only a few more to go..." 

I know that won't be much reassurance to someone who feels they cannot cope with another day. I feel for all of them, because what can you say? How can you reassure? You can't, not really, because clearly, it's all bloody awful. You might as well say nothing at all. That might be better, in fact.

He shuffles into the toilet as quickly as he can.

"He is just so emotional," his wife says to the radiotherapist, her voice edged with worry. When he emerges, dabbing his eyes with a tissue, they sing his praises about how well he is coping.

"I just feel so weak," he cries.

The radiotherapist tries to reassure him, "You've had chemotherapy and that knocks you for six, and now you're having radiotherapy and that knocks you for six. Put them together and you're knocked for a hundred. It's to be expected."

He just stands there, looking broken. Looking like a shadow. A shadow of his former self, I imagine.

It's just me in the waiting room. When the radiotherapist leaves, I am tempted to go over to him and say "oohh..." and not much else. I would love to sit with them, talk to them, listen to their stories. Hers, as much as his. It can't be easy when someone you love and care for is so ill and miserable. 

But instead, I stare at Vogue (it was either that, or Hello) trying to swallow back my own tears. Gone are the bright eyes and the bushy tail. Because there is an easy crossing between my genuinely cheerful smile and this man's tears. I could be there in a jiffy. I suspect most cancer patients can. It's just quite rare to see it in public.

Perhaps it's easier for patients to hold it together in the chemotherapy lounge, where you only have to go once every couple of weeks, so you can gear yourself up for it. This radiotherapy business must be relentless, especially for those who have to attend for more sessions than me (six week courses are standard), or those who are much more ill than I am.

I remember now how, during my hospice days, we sometimes sent terminally ill patients for radiotherapy. Not because it might cure them, but because their tumour was growing so large that it was pressing on something inconvenient (a windpipe, say, or a bowel) and it caused them nasty symptoms. A few shots of radiotherapy could shrink it to manageable proportions. Those patients were often very ill indeed, and they must have come to this very same waiting room.

I will be looking at my fellow patients, and I'll be wondering about all their stories. But I will try not to ask them.

I'll try to be a patient, not a nurse.

*It wasn't really Sue, but let's just keep her anonymous

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