A day in the life of a radiotherapy patient

For those about to undergo radiation treatment or those just interested in what’s involved, here’s a typical day in one of the thirty days when I’m zapped for my own good.

I wake up late. Radiotherapy makes you tired. I’ve also had some uncharacteristic difficulty getting to sleep and I sometimes wake with a jolt during the night, sure that I’ve just dreamt something shocking enough to wake me but unable to recall it. I don’t know if this is related to treatment.

I usually dress in my gym gear straight from bed because this makes it more likely that I’ll do my daily yoga. Lately it feels like I can hardly lift my arms but I know that I need yoga the most when I least feel like doing it. Even five minutes makes a difference. I have coffee first, then do as much yoga as I can handle and then have breakfast.

My treatment is usually scheduled for the middle of the day. I thought this would help me to avoid school traffic and also provide me with the opportunity to combine treatment with lunch. Lovely lunches with girlfriends have helped to make treatment more pleasant.

I usually use the time between yoga and treatment to catch up on a few chores, check my messages or pick some produce from the garden. After this I shower. I have the water at my usual temperature while I wash and then I turn the hot down and run the cooler water over the area being treated for a few minutes. This really seems to help and my skin always looks a lot less pink afterwards. To make sure I have enough time under the cool water I sing ‘Happy Birthday to You’ twice.

When I get out of the shower I don’t dry off. I have some hemp oil in a pump pack with some essential oils in it to improve the smell. I used this all the way through chemotherapy and it’s still keeping my skin healthy. It goes on in a thin layer all over my wet skin from the neck down and then pat myself dry. I pay special attention to my left breast, the centre of my chest and the area under my arm. It’s easy to find because the radiation makes it pink and it’s also causing some seborrheic keratosis (little brown lumpy things on my skin). I’m careful to avoid anything that might interfere with the radiation treatment including sun block, anything with minerals in it or zinc cream. The advice from the nurses at the treatment clinic is to only use natural products and to avoid anything with chemicals. Too easy. They sell a range from a company called ‘Moogoo’ but it’s not compulsory.

After my shower I dress in something that will make it easy for me to strip to the waist. I also wear shoes that are easy to slip off. I like to get a bit dressed up for treatment. It’s part of feeling positive and confident. No, my self esteem is not linked to my wardrobe but the ‘Look Good, Feel Better’ program helped me to understand how much better you feel if you know you look nice. I’m a convert.

The drive to the treatment clinic is about 20 minutes from home and there’s plenty of parking. As I come past the reception area I scan my card with a bar code. I don’t like having a bar code. It makes me feel like a product. Yes, it helps the clinic run more efficiently and it ensures I rarely wait more than a five or ten minutes, but I still don’t like it. I keep thinking of alternatives, like a really cool key ring or a bracelet. I have a seat in the large waiting room. There’s a coffee machine, biscuits, magazines and even some communal knitting. There are stands with lots of Cancer Council information and free turbans made by local crafts people. I’m not usually here long.

The sliding door opens and they call my name. I needed to remind them during the first week that I am not a ‘Mrs’ and I prefer to be called by my first name. It might seem like a small thing but anything I can do to make this process more pleasant is worthwhile. I walk down a short hall to one of two change rooms. They both have good curtains to ensure privacy and a sign asking people not to enter if the curtain is closed. My gown is stored between treatments in a pigeon hole on the wall. There’s a piece of tape with my name on it. I strip from the waist up and put on the gown, opening at the back. I put anything I take off in a basket and then sit on a chair in the hallway with the basket on my lap while I wait to be called in to the treatment room. People I don’t know walk past me. Some of them smile. Some of them do that disconnected busy stare that people use to avoid contact. Once again I wish the waiting area was more private.

The clinic has about ten different technicians. Over the course of treatment I’ve met most of them and I make a point of remembering their names. It’s another way to make things more personal. One of them calls me into the treatment room. It’s huge, and so is the machine, but not claustrophobic. I head straight to their iPod set up and plug in my own music. It’s my relaxing selection from chemotherapy. I don’t like their 80's hits and they’re very happy for me to bring my own. Just one more way to personalise the experience.

There’s a foam support on the treatment table that goes under my knees and a moulded support for my body. They made this at my planning session. It’s like a small bean bag with the air sucked out of it. I lay back into it and take my arms out of the gown so my breasts are exposed. I put my arms above my head and hold on to the top of the body mould. My job from here on in is to imagine I am a bag of wet sand.

Two technicians find the four tiny tattoos on my body and mark them up with marker pen so they’re easier to see. They use a laser line and the markers on the table to line me up. This usually only takes a minute or two. Sometimes they need to push the body mould over slightly, or to use a cloth under me to roll me just a tiny bit. My left upper arm usually needs to be rotated so it’s not in the way. Sometimes they adjust the whole table and there’s a loud clunk with each adjustment. I need to resist the temptation to help them. Helping isn’t helping. Be the bag of sand.

The technicians sometimes exchange a bit of small talk but mostly they have a conversation predominated by numbers. Twelve. Twelve. Six point five nine. I’ve got eight……..

Once they’re happy with my position someone always say “Here we go,” and sometimes “Stay still now” or perhaps “We’ll see you in a couple of minutes.” There’s a closed circuit camera above the machine and a two way microphone so they can see me and talk to me if they need to. They don’t usually need to. They know I prefer to have the lights down so someone usually adjusts them on the way out. I appreciate this kind of consideration. I also like it when someone thinks to cover my right breast. I know it seems redundant when I’ve been so exposed but it’s a sign of respect and understanding. Nobody likes to be this exposed and anything that reduces the discomfort is welcome.

The machine rotates around me. I can see a large, grey rectangle above my head. There’s a sticker on it warning people not to sit on it. In my current position I find this concept mildly amusing. I imagine technicians throwing wild parties and riding the machine. They use it to take an image and there’s a low hum. Then there’s a pause while they look at the scan.  I wait. I breathe. I imagine wet sand and try to relax my body.  Sometimes they adjust the table remotely. Clunk. Clunk.

The machine rotates again and a large metal circle with a glass window moves over my head and down below my left shoulder. On the roof I can see a curved shadow silhouetted by the light from the machine. It’s dissected by the red laser line. I don’t know if it’s a shadow of my breast or my arm and I can’t move to find out. Why do I have the same thought at every treatment? The machine gives off a metallic hum for a couple of seconds, followed by a shuffling as the aperture is adjusted and then there are two shorter bursts.  The machine rotates again and now the giant eye is above me and hovering over my right shoulder. It’s pointed back towards my left breast and the sequence is repeated. One longer hum, shuffling and two shorter hums. The whole thing only takes a few minutes.

About half a minute later and I can hear the door to the treatment room open. I’m told I can put my arms down and I take the opportunity to put the gown back on and cover myself up. One of the technicians adjusts the table so I can climb off it. I unplug my iPod, pick up my basket and head back to the change room. I use my own wet wipes to remove the marker pen from my body and once again wonder why they don’t do this, or at least provide the means to do it. The first couple of treatments I had marker pen stains inside my bra. I get dressed and head home.

There hasn’t been any effort to explain the treatment plan to me. The treating doctor explained the rationale for radiation treatment at my first consultation and since then someone has put together the actual treatment schedule. I know from the sheet they give me with all my times and dates on it that I’m having ‘syn breast six flds’ but I haven’t asked for details. It’s unlike me. I’m usually the information glutton.

When I get home I take my top off and soak the treated area will cool, salted water. This idea came from a book I read and not from the clinic but the nurses there have okayed it. I put a teaspoon of salt into a couple of cups of cold water and use a washer to soak my breast and underarm. I do this for about ten minutes and my skin looks and feels cooler afterwards. I follow this up with some cream. I’ve been using an aloe vera based body lotion by Swisse which smells and feels lovely.

If it’s possible, I try to spend the next few hours without a top on. A lot of the problems associated with radiation are caused by clothing rubbing against the site. No clothing means no rubbing. Simple. My husband is particularly fond of this part of the treatment and is also happy to help me apply cream. He stands behind me and makes sure I’m well covered. We laugh and kiss. Suddenly radiation treatment is not so bad after all.

This has been my week day routine for the last several weeks. I get weekends off. I usually try to give the area a special treatment on weekends, like a good, thick coating of paw paw ointment. It all helps. I rest. I sleep. I am getting very good at taking it easy. Radiation works by killing off the cells in my breast. The healthy ones regenerate and any stray cancerous ones get zapped.

Every so often I have a treatment review with one of the nurses. They check on my progress and how my skin is holding up. They’re both lovely, compassionate women. I’ve had one appointment with the doctor during my second week of treatment. I only have one more visit with him when treatment is finished. Once a week a get a bill for services and they process the medicare claim at the same time. Treatment won’t cost me more than $2,500. If I had gone to the public hospital I could have had it for free but I elected to use this private clinic. They take an image before every treatment to make sure they’re on target and the public system only does this once at the start of treatment and once half way through. With my heart so close to my tumour site I thought this was an important difference. I’ve also spoken to two women that used the public system and both complained of long delays and nasty skin burns.

I’ve still got seven treatments to go but so far no skin burns. I am so relieved. Fingers crossed for not having to deal with that although I’m told they can still occur in the weeks following treatment. My doctor was of the view that I might not have any burns so there’s something in the way treatment is planned that obviously has an impact upon this.

Seven treatment days to go. Some of this will involve a ‘boost’ to the tumour bed and they’ve already mapped me for this. They’ve got a piece of transparent film that they put over my breast while they copied their markings and they’ll use that to position me for this part of the treatment.

While I haven't had skin problems so far, I've been warned that the worst of it happens in the two weeks following treatment. The underarm and the bony part of my chest are the most likely areas. I've bought their recommended paw paw cream. I'm ready. This too shall pass.

There are risks associated with this treatment, including a very small risk of a more aggressive cancer, but given the aggressive nature of my original cancer and the overwhelming data showing radiation can reduce my risk of recurrence, I’ve decided to have it. Like so many aspects of cancer treatment this is a very personal and individual decision. Some people prefer to avoid the risk of side effects by taking their chances. It can be a hard call.

Apparently some people get emotional on the last day of treatment. I’m guessing that’s the relief of having it all over and done with. I’m going to organise lunch with a girlfriend. There may be a few tears but I don’t think so. I’m starting to shift my thinking beyond treatment.

This will be the end. From June last year until April this year my full time job has been recovering from cancer. Now I’m planning life after illness. I’m very much looking forward to that. I’ll also be counting down to my three year anniversary. Triple negative breast cancer has a higher rate of recurrence than other breast cancers, but if I can make it to three years without that happening the odds of it coming back at all drop significantly. I’m very much looking forward to that, too.

Reblogged from positve3neg.wordpress.com