Sunburnt backs, patchwork dressings and crop tops (Radiotherapy part 2)

I wouldn’t like you to miss out on my radiotherapy adventures so here goes, before I head off to my final session and the last of the hospital-based phase of my breast cancer treatment.

Radiotherapy treatment session 1, Thursday 4th February: I turn up for my very first session minus one of the three stickers that I’d been meticulously measured up for and had stuck on me during the radiotherapy planning session a week or so earlier. The radiographers draw red and black lines on the stickers and use those as markers at every session to help ensure you are in exactly the right position for treatment (A very strange position to be in (Radiotherapy Part 1)).

When I realised I’d somehow managed to “lose” a sticker, not  long after getting it, I went into panic mode. You must have realised by now that that’s my default reaction (In the end, the wig ditched me  & Emergency delivery of post-chemo injection – to the pub!). When I contacted the radiotherapy department to tell them, however, they said not to worry and that they’d be able to use the traces that had been made of my boobs (yes, really) during the planning session. The traces or templates consist of what seem to me to be, rather than tracing paper, squares of thin, flexible perspex. These were placed over both breasts during planning and the planners “traced” the nipples, scars and various other markers (freckles?). The templates are used in the actual sessions among other things to check whether your shape changes during treatment, due to weight change or swelling, for example. They put them back over you – although not at every sesssion – to check everything’s more or less in the same position as it was in the planning session. There is some leeway but your shape mustn’t change too much. I’m advised to try not to put on or lose any weight over the 3.2-week treatment period.

20160225_233246I have three stickers, one on each side of my body a couple of inches down from my armpit and one right in the middle of my cleavage (happy still to have one of those!). That’s one of the stickers in the photo. The netting is explained below.

After the first radiotherapy session, I’m given some aloe vera gel and some oils to rub into the treated area three times a day to help minimise any skin reaction to the radiation.

Treatment sessions 2-5: Uneventful.

Treatment session 6: I turn up and report that I’m feeling a bit fluey. The reconstruction and surrounding area is looking a bit red and swollen. Skin reactions – redness, rashes, dry skin, itchinesss – to radiotherapy are common, but not at this early stage. The radiographers have me see the doctor, who prescribes a cream to rub on the affected area. I’ve to keep using the aloe vera gel and oils.

Treatment session 7: I’m feeling fine. The reconstruction, however, is redder, more swollen and very warm to the touch. “That definitely wasn’t us,” the radiographers joke. They suspect an infection. They call the doctor back. He prescribes antibiotics. He’s providing cover and says I should see the regular doctor on Monday morning, before radiotherapy.

Treatment session 8: Everything relating to the reconstruction and surrounding area has got worse, but I feel more or less ok. I can’t feel anything on the reconstruction itself as there is no sensation there. I have a sense that if I could, I’d be in considerable pain. Outside of that area, it’s very tender indeed. The doctor, who I know from chemo, isn’t happy. She gets a big black marker pen and draws round the borders of the rash/redness/swelling so we can track whether it gets any worse. She sends me off to my radiotherapy session saying I need to see her again when I come out. In the meantime, she arranges for me to see the breast surgeon later that afternoon (the consultant oncologist in charge of my radiotherapy is not around) and to have a scan that evening to check whether the swelling is being caused by fluid collecting in the area (I have form here, having already had fluid collections or seromas drained four times since my operation). I see the surgeon, who immediately starts me on a different antibiotic. The radiologist who’ll do the scan takes one look and announces “that’s cellulitis”. There is some fluid but apparently not enough to need draining. I’m starting to feel fluey again. I go back to the breast surgeon and, after a review of the scan results and a brief chat, he decides I should be admitted to hospital for a course of iv antibiotics to treat the cellulitis (It went downhill from there). Radiotherapy is off the agenda for the moment.

Treatment sessions 9-11: After a two-day break, I start back at radiotherapy. Coincidentally the machine was down the two days I was in hospital so I wouldn’t have had treatment then anyway. Things seem to be settling down although it’s hard to tell how much of the redness and swelling is down to the cellulitis and how much of it is a skin reaction to the radiation.

Treatment session 12: The radiographers don’t like the fact that the area where the breast meets the chest, the “intramammary fold”, is very red and inflamed. It is painful. It’s apparently quite common for radiotherapy to affect this area. However, this is where the “flap” of skin, tissue and blood vessels that was transferred from my abdomen for the reconstruction is attached. The last thing they (and I) want is for the skin or scar there to break down. The plastic and reconstructive surgeon is going to freak out as it is at what’s happened to her masterpiece when I see her next Tuesday. OK she won’t, because doctors don’t do that, at least not in front of their patients, but I would if I were her.

The radiographers decide a dressing is needed. The radiography assistant applies one after the session. It’s moist, cool and very soothing. Let’s not dwell too much on what it looks like, other than to say that it has to be cut to shape and I resemble Elmer the Patchwork Elephant – in pink and red. I joke about how ridiculous it looks.

I then to go upstairs to see the oncologist, who wants to see me/the damage. We discuss the cellulitis and my short hospital stay and she expresses concern that I’ve “had to go through this”. After her examination, she decides to extend the course of antibiotics that I’m on for an extra five days and says to get back in touch immediately if anything changes for the worse over the following few days.

Treatment sessions 13-14: The radiographers remove the dressing before each session and the radiography assistant applies a fresh one after each session. Now though, she decides it’s best not to use tape on the part of the reconstruction that has no feeling. So I’m wearing what can only be described as a netting crop top to hold it all in place. That’s me in the photo above. It’s an exciting addition to the range of sexy breast-cancer related garments I already own (The least sexy washing line ever). “It’s good we can laugh about it,” I say to the radiography assistant and the radiographer who’s also there on one of the days. “No,” says the radiographer, “It’s good you can laugh about it.”

Treatment session 15: Another day, another dressing, another netting crop top. But there’s more. I’ve developed an itchy rash on my upper chest in the area that’s being treated – they cover that with a dressing too, to stop me inadvertently scratching – and there’s a red patch on my back at the radiation exit site. It feels like mild sunburn, which I guess is not too far removed from what it is. The joys.

Treatment session 16, Friday 26th February: FINAL TREATMENT HERE WE COME…


In the end, the wig ditched me

I was feeling really exhausted and fed up on Monday evening. When I woke up feeling much the same on Tuesday morning, I decided radical action was needed. The bike, I thought, could be the answer. I would cycle to my fourth radiotherapy session. It would be the first time in around three months that I’d done any cycling.

Just making the decision made me start to feel better. I got the bike out and pumped up the tyres. I stuffed the pump and everything else I needed into a little backpack and, with my cycling headband* and winter cycling gloves on, I set off.

The bike, as always, is part of the solution (Love that bike!A lesson on living in the now). I loved every second of the 5.7 mile ride to the clinic, even the hill, and I felt great when I arrived. I locked the bike up, looked in the backpack for my wig to throw it on before making my way inside and realised to my horror that it wasn’t there.

I swear my heart skipped a beat. It was the same feeling of utter horror that I’d had when I was out having a meal with some friends to celebrate finishing chemo last November and realised that I’d forgotten to give myself my critical post-chemo injection (Emergency delivery of post-chemo injection – to the pub!). That time, my older son brought the needed item to the pub. That wasn’t an option this time.

I lost my hair to chemo last September. I hadn’t gone out in public without some sort of head covering since. I finished chemo at the end of November and so my hair is growing back, but I hadn’t yet taken the plunge. Now I had no choice. I simply (?) had to take a few deep breaths and go for it.

I remember thinking this must be what a panic attack feels like.

I phoned my husband Andy for some moral support. While frantically pacing the clinic car park, I treated him to a monologue that consisted mainly of me repeating down the phone the same four-letter word over and over and over (think the opening scenes of the film Four Weddings and a Funeral). I then phoned a friend who’s a couple of weeks ahead of me in terms of treatment (although it has to be said she didn’t lose her hair). This is the friend who said she wouldn’t have worried about not having had the injection and would just have waited until she’d got back home. The two of them found my discomfort all highly amusing, which I have to say did calm me down somewhat. As they pointed out, I couldn’t have picked a more receptive audience for my wigless public debut.

Deep breaths taken, I walked in. It wasn’t easy. Of course everyone I met said how good I looked, how well my hair was growing back, etc, etc, etc. I could literally feel the tension fading away. And when I explained it had been an accident and how it had come about, it felt even better.

It turns out I’d put the wig in one backpack and the rest of the stuff in another. If you must know, I swapped because the first one clashed with the cycling jacket I was wearing! (Bet that surprised you, my fashionista nieces Louise and Shereen.)

I haven’t worn the wig since. And it’s such a relief. Perhaps something was going on subconsciously that morning, because just a few days earlier I’d written about how and why I couldn’t wait to ditch it (One’s changing relationship with one’s wig). In the end, the wig ditched me.

Whether the wig stays unworn depends, I guess, on how my hair grows out. But so far, so good, and I’ve got a story I’ll be able to dine out on for a long time!

*No helmet, I’m afraid. In the three months of having been bike-inactive for want of a better term, my helmet appears to have “got lost”. No-one in the house is taking responsibility for said loss, but I didn’t lose it and I’d bet my life Andy didn’t either. That leaves just two possible culprits. They know who they are.