Wall mounted bell that patients ring at the end of their course of radiotherapy
Moaning, Oligodendroglioma, Radiotherapy

It tolls for thee

Yes, I finished radiotherapy, and yes I rang the bell, but it was an anticlimax. Why? Well, lots of reasons really.

First off, the day before my final treatment, at the weekly clinician review Sarah the Neuro Oncology nurse specialist reminded me that radiotherapy side effects usually get worse for a few weeks after you finish treatment. I had thought that this was because the effects are cumulative, and continue to build even after finishing, but Sarah said that much of it is also that phenomenon we’re all aware of; of working hard at something like a project or set of exams where you don’t have time to be ill, so your body somehow manages to make you temporarily indestructible to survive the onslaught, then as soon as it’s over, your immune system packs up and goes home so you always come down with the lurgy on the first day of your holidays.

Sarah also asked about the extent of my hair loss, so I showed her. Bless her, she tried, but she couldn’t quite hide being taken aback by the extent of it. When someone who spends all day with brain tumour patients in treatment is surprised by how bald you are, you know you’re pretty chuffing bald. However, Paula the Oncologist’s letter to the GP about the progress of radiotherapy did cheer me up a bit.

She has lost significant hair in an arc matching the beam direction but is using a very fashionable and stylish approach to deal with this.

This lot are hell bent on giving me unlikely compliments. Next up was an appointment with Paula, so we could talk through the plan for chemotherapy. As she cheerfully admitted (except more politely), she was about to scare the shit out of me. Which she did. Comprehensively. Naively, I thought that the danger for chemotherapy patients was that the drugs suppress your immune system so catching a cold for example is way more serious than under normal circumstances. Avoid everyone with a cold, and job’s a good’un. Oh ho ho no. Apparently, the danger is YOUR OWN GERMS. Germs that live on our skin, in our guts, gums and generally coat every bit of us that we never even notice. We feed them, we nurture them and how do they repay us? By trying to kill us when we have chemotherapy.  So that’s cheery.

This whole paragraph is based on my current understanding of chemotherapy for brain tumours. I haven’t double checked it, so please take it with a pinch of salt, and bear in mind that my brain is radioactive and tumorous. Don’t take my word for any of this shit, it’s not worth much at the moment. Very few types of chemotherapy pass the blood brain barrier, the body’s defence mechanism which stops infections and so on reaching the brain. There are only really two in common usage at the moment; Temozolomide, the newer of the two, has fewer side effects, but long term effectiveness is not yet shown to be as good as the standard chemo, so in the UK is used primarily for patients who are already really quite poorly, or where long term effectiveness may sadly be fairly irrelevant. My type of tumour, an Oligodendroglioma tends to be pretty responsive to the standard PCV chemo, especially where it has a mutation called 1p19q co-deletions, which (again, only my limited understanding) means it’s an especially crap type of tumour, that tries to delete itself rather than replicate itself when faced with a spot of chemo. Happily, I have the 1p19q mutation, and as we know, am very young and very fit according to the neuro team’s extremely low standards, so will do 6, 6 week cycles of PCV chemo, involving 3 drugs; Procarbazine, CCNU and Vincristine.

Chemo is usually started 28 days after the tumour has been softened up by radiotherapy, but that puts us at the 19th of December. Paula decides there’s not much difference between 4, 6 and 7 weeks, so I can have Christmas off. This does mean however, that I’m likely to be doing chemotherapy until next Autumn, presuming my blood counts are good enough to stick to the six week schedule for each cycle. The completion of radiotherapy no longer seems like a big thing or a bell worthy thing. In the mountain of treatment that has to be climbed, it seems like no more than clearing the foothills so I can now *see* the mountain.

On the actual day of my final radiotherapy session, I feel great, but recognise that this is because it’s the last day. If they decided to tack another ten sessions on, I’d be done in.  I get all tarted up for the photos and don my purple wig for added effect. I’ve got so used to the bell ringing in the waiting room, that when a bell rang on TV and in a shop in the past few days, I very nearly broke in to a round of Pavlovian applause.  When we arrive, the place is hotter than ever, and they’re running behind. My make up starts to melt. Eventually I decide to whip off the wig and at least sit in comfort. One of the other patients, who is an inpatient, and clearly not a well man (he is a colour that I have never seen on a human being before) is taken in for his session. It seems to last a long time. Some doctors go in to the room. Some more arrive, and more, until it must be standing room only in there. Some kind of once in a lifetime irradiation anomaly is clearly underway and everyone wants a look.  The guy comes out in one piece thankfully, but room 2 is now running so far behind, they change my session to a different room. It’s not a problem, the poorliest people must take priority, but I did want to say goodbye properly to all my lovely regular radiographers and now can’t.

Whilst all this is going on, I realise the gift I’ve bought the team is totally stupid. Assuming they must all be pig sick of Celebrations, I’ve got them a pair of Hulk hands.  To share between about 12 of them. As a gift for a team, it would be stupid even if any of them knew about the Hulk joke, but only one of them Bethany, does, and she’s not been around for several weeks.  So I’m basically giving a group of adults 1/6 of a dressing up glove each, for no obvious reason. Idiot.

Dress up Hulk hands.
Dear god we need a new carpet.

I finally get to say a quick goodbye to Anna and Sarah, the radiographers I see most often. We hug, and they tell me to pop in whenever I’m passing to say hello. It’s very sweet of them, but I kind of hope I won’t be passing the basement waiting room of the regional cancer centre all that often.  They’re too busy to open the present right then, so thankfully I’m spared their WTF? faces.

Both A and my sister have come to watch me ring the bell, along with 2 year old L, my nephew. He’s an absolute delight, wandering around charming the other patients and laughing at my wig, but after a long wait he’s ready to go, so we head to the bell.

I promised to give that bell some welly, and I really really tried, but the pole attached to the dangly bit gets right in the way. The first DING is good and loud, but then all attempts at a resounding dong are foiled, with the clanger just scraping round the rim of the bell with a really weedy muffled sound. As it’s lunchtime, there’s no one around, but a bloke walking past gives me an embarrassed clap. [yes, this is the most double entendre laden paragraph you’ve ever read.]

And that’s it, done. It’s like leaving a job. Although it’s only been seven weeks, daily radiotherapy has provided a structure and routine to the day that has been missing since I closed the business. Now I’m floating free again, waiting to see if I get the dreaded Somnolence Syndrome, in which you sleep around 20 hours a day, and according to various sources starts anywhere from 2 to 8 weeks after treatment and is either exceedingly rare or almost guaranteed. It’s not a given.

When we get home I look at the photos and videos A and my sister took. I look like a daft, fat old bat in melted make up and a stupid, wonky pink wig, who’s incapable of ringing a bell. It all just makes me feel fed up. And then my immune system decides it’s done enough sodding work for this month, and I crash out.

 

 

 

3 thoughts on “It tolls for thee”

  1. Hi Ruth, I found your blog via one of the Scandi pages. Just want to say that it’s touched me in so many ways. Your writing is hilarious – I’ve often read bits out to my husband between snorts. But also I’ve had a bit of a crappy year, and your blog helps remind me that it isn’t just me and that there is light amongst the sadness. Hope that doesn’t sound too narcissistic! Hope you have a lovely Christmas before things begin again xx

    Like

  2. What an amazing young woman you are Ruth. Your blog has made me laugh out loud and shed some tears but most of all it has made me admire you. Enjoy Christmas!

    Like

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