Part 27. Radio, Stevie Wonder & Rachel Bland.
As, by Stevie kicked in just as I’d removed all my upper clothing and was taking the few paces across the room to my special giant ruler bed for my first blast of radio on Tuesday September 4th. So I could preserve the minimal dignity I’m left with (fucking none), I pulled my vest back up over my boobs for those few paces. I smiled as I got in to position and exclaimed ‘George’, thinking it was the George and Mary J version, until Stevie started with the do do do do’s. I love Stevie. I also love George and Mary. That’s not relevant to the story, but good to know, right?
Three very nice people (being lovely is clearly a prerequisite if you work at the Sussex Cancer Centre) stood over me, placing my right arm in rests above my head, something that would have been impossible less than a month before, and moving my body in to the precise position set at the CT planning scan. One of the staff said she was going to move me but I shouldn’t help her. Instead, I learned, I must let my flesh be pressed and pushed in to position, hands pressing on my ribs, arm, chest. It’s intimate, that’s for sure. In the glass of the large disc hanging over me, home to the intense x-rays to be blasted at the spots marked on me, measured by the millimetre, I could see the reflection of red and green beams on my right tit. Red and green rulers cutting across my newly formed, very upright boob. On either side of me, 2 of the staff used little metal angle rulers to ensure that 1.2 (a number they seem to like) is good, as were some other numbers with decimal points, and then they put bigger marks on my skin with black marker pen.
Once the team were happy everything (all my pasty flesh) was in place they pressed an alarm and left the room reassuring me that they were watching all the time and I should wave if I needed it to stop. Great. I’m half naked, one new boob and one original; wig likely hanging backwards and looking very wiggy; and 3 strangers are watching me watching a giant disc hover then make a long high pitched beep as it blasted my chest. It blasted from above first, then glided all the way to the left of me, down pretty low, and blasted the inside of my right boob, where tiny a tattoo dot sits in the centre of my cleavage. Beeeeeeeeep. Then it glided over me and all the way to the right of me to blast the right of my boob/armpit where another tiny tattoo lives. Beeeeeeep. All the while Stevie was merrily singing away, then Belinda Carlisle kicked with her trademark vibrato.
In this world we’re just beginning
To understand the miracle of living
Baby, I was afraid before
But I’m not afraid anymore
Ooh, baby, do you know what that’s worth?
Ooh, heaven is a place on earth.
Topical Belinda and kind of on point if a little cheesy, but the heaven on earth part was definitely lost on half naked me laid out on a giant ruler while being attacked by “giant lazooors”. Totally is like sci-fi tech.
Finally This is a Man’s World kicked in. Bet a man invented this machine. Yet another that feels like science fiction torture.
It was over pretty quickly and they informed me that this and the half way appointment will be the longest ones as they take x-ray pics at both to check all is ok. I put my clothes back on as they prepared the bed for the next person. There’s no curtain or anything. This is a quick turn over affair so just get your kit off and get in position, then bung your clothes on again and leave. Apparently these people do a shit-ton of treatments a day (they did tell me but I forgot and a shit-ton definitely covers it), then spend 2 hours doing paperwork, finishing at about 7pm. Bet they get crap pay for their kindness and precision work on people at the end of physically and emotionally hellish jooouuurnies.
I went back to my car and felt lucky to be able to drive only 10 minutes to my door. An older couple I got talking to are doing this with an hours drive there and back every day. What I’m doing is exhausting, there’s no way I could do it alone with an hours drive before and after – every day.
Every day for 15 days in my case. It’s another thing to fit in as I return to work, albeit part time, and the kids go back to school. I have to think about what to wear that won’t mean taking everything off, and I have to load my chest from collar bone to ribs to arm pit in balm and aloe vera gel twice a day to prevent burns. Moisturising a new boob that’s still healing and feels very strange is something I’ve had to get used to. I collect N from school some days, leave her alone until G gets in while I go and get blasted, then come home and ‘cook’ dinner. That’s mainly comprised slamming ready made pies in the oven and cooking a ton of frozen peas.
That’s all worked ok but it’s not fun. Fatigue has steadily built up and the treatment as reminded me of the shitstorm I was thrown in to in January and that despite this being the last invasive treatment for a while (fingers crossed, touch wood, please all the gods), this is not going away any time soon. By this is mean the knowledge that I have had cancer, an aggressive cancer, one that likes to spread or recur. Having that in ones head is pretty shit.
It’s not in my head all the time but the night of my second radio blast one of the top stories in the news was Rachel Bland’s death age 40. Rachel had triple negative breast cancer, as did/do I. I still don’t know if it’s past tense-able yet. I guess it is. I want it to be. Yes, it is.
I was asked (out of love) if Rachel’s death had affected me as she had the same cancer. I had shared Breast Cancer Now’s tribute to Rachel on Insta as she’s been a powerful voice for cancer and I’ve been aware of her blog and podcast. Although sad, as anyone’s death is, it hadn’t affected me as I didn’t have the privilege of knowing Rachel.
The question itself affected me because it made me think. The news didn’t because I maintain, and it’s true, that everyone’s diagnosis, prognosis, body, story etc. is their own. I had a triple negative cancer diagnosis, as did Rachel, but we inhabit two separate bodies and our initial tumours were two different tumours. Not to mention the bastard second tumour that had been hiding in Rachel’s breast. The question however made me question myself. Should I be affected? Should I be frightened? Am I bottling stuff up and I’m completely unaware of it? Am I hiding from a truth I don’t know about? Am I naive to work with the facts I’ve been given by my clinical team each step of the way? Is the evidence so far enough? I actually doomed?!
This wasn’t about the question, or Rachel, or radiotherapy, or tiredness. It is the psychological impact of cancer. Cancer really does gift you an enormous bundle of varied treats and challenges and messing with your head is one of them. In her blog in January of this year on Cancer Anxiety Rachel wrote a whole piece on the psychological impact, and believe me it’s frigging real. I started googling TNBC mortality rates again as I did in the days following diagnosis, despite my histology saying that my body is cancer free. That isn’t enough when I go to the dark place. It’s a head fuck. But a word with myself, a reminder of the evidence, regular counselling through MacMillan, and writing lots of words including a fair amount of swears brings the focus back.
Back to life, back to reality.
I think the head fuckery went hand in hand with the sudden return to well, sort of everything…all at once. I was leaping out of bed (a heavy, slow-mo kind of leap) to start the day at 6.30 ensuring the girls had breakfast, packed lunches, the right uniform blah blah blah and doing all that other domestic family stuff as well as getting to work, actually doing work, and getting to radio on the other side of town before returning home to be mum again. After 7 weeks of surgery recovery and kids summer hols I think body and mind had a lot to deal with. This is coupled with the fact that I am actually now physically capable so I’ve been able to stand down the Knights Army heroes who have cooked, cleaned and laundered for me!
Radiotherapy can have various side effects, fatigue and burns being the main ones. The fatigue started kicking in during week 2, as did the sore red patch under my right boob. There have been a couple of times where I could have slept standing mid afternoon and I publicly fidget with my bra a lot because of the sore bit. I’ve taken to popping a rather attractive piece of medical wadding there as protection. Still fiddling though. Fortunately the Army hasn’t really stood down and I have and am getting through radio with regular check-ins, a bloody superb team at work and lots of 9pm bed times. Not to mention ALL the vitamins, CBD oil, good nosh and too many chocolate treats. Oh, and lists, because I forget it if it’s not on a list. Chemo brain.
Mind and body.
Fingers crossed though I’m nearing the finish line without falling. At the time of writing I have just 3 more to go (eeeek!), my last being on Monday afternoon (24th September). Then the invasive treatments are done for this year. YAY! The key now will be to remember that leaping (in slo-mo) out of bed and running around like a blue arsed fly 5 days out of 7 isn’t healthy, and I’m not ready anyway. Slow and steady Em, remembering that life needs to be lived but the mind and body are now top priorities and always should have been. Just needed a massive punch in the tit to learn that lesson.
So gentle exercise has begun every morning to make the most of my stupid early wake up times, as well as continuing all the lymphatic drainage/arm movement exercises, and I do some yogic breathing as that’s a bit like magic. Oxygen in, toxins out, diaphragm engaged, brain alive! That’s science that is. I’ve just put my biology and chemistry GCSE learning in to a sentence. Chuff I’m wise….and yogic.
Namaste (pronounced /namaast/ rhymes with paste). You’re welcome
Other songs played during ‘giant lazooors’ time: Best of My Love; Knock On Wood; How ’bout Us; Respect; Faith (in myself!); Rumour Has It; some jazz; I’ll be Your Clown (which they had to switch off as I started crying!); I Don’t Feel Like Dancing (I did).