On what is the hottest day of the year so far, it seems slightly ironic that I am talking about a cancer treatment that involves high radiation that can damage skin while destroying cancer cells, but I have wanted to share my experience of radiotherapy for some time. Since I have had two courses of this treatment, I want to mention both, so, at the risk of boring you all stupid, I have split the blog into two parts, hoping that what I have written will effectively reflect on what radiotherapy treatment involves. I am not writing this from a medical perspective, I am also not going to go into too much of the technical side, but it is my view as a patient. Being able to share my story about this form of treatment has always meant to a lot to me. Since it is often the last round of treatment it can be viewed as the easier section but it is still a form of treatment with its own procedure, routine and side effects and I want patients, friends and family to feel a little less in the dark about it. I would also like to mention that I have included a picture of me, post my clavicle surgery in this blog. It is not meant to upset anyone but I wanted to stress that I have included it as more of a realistic illustration of the area concerned and to show how close the two areas affected were, on my body.
As I lay there, staring up at the off white ceiling that had so many holes in it, it looked like a piece of Emmantel cheese, I was not only reminded how hungry I was, but wondered how on earth this could be happening again! Just a few moments before, I had been sitting, freezing, on another hard plastic waiting room chair and I knew this time round was going to be very different. Over The TV Times covered coffee table an older gentleman had smiled cheerily at me. Clearly he hadn’ t been waiting for over an hour with a September breeze blowing generously through the revealing gaps in the attractive thin cotton hospital gown we were asked to model, before being invited into that dark examination room.
Second time round, not only was the lump in my clavicle rather than my breast, I was to be treated in a different hospital (I lived in a different area now) and because I had had radiotherapy before, the measuring up procedure was a lot more complicated. You can’t have radiation in the same place twice and X rays are required before your treatment starts so that your team and consultant can mark up the exact area correctly. This was therefore becoming a very long and rather uncomfortable session.
Me, post clavicle surgery. The feint line above my left breast illustrates where my first course of radio was in relation to where I would need it now.
I cant say I have ever had pins and needles in my neck before! The procedure involved lining me up so the lasers and little mini light that danced over me made the correct pattern designed specifically for my case. I had to lie so still and breathe so carefully so as not to disrupt any of the measuring going on, that I wondered if had I sneezed I would probably have faced some equally as uncomfortable punishment!
As anyone reading this, who may have had or is going through cancer, may have experienced, treatment and surgery frequently seem to give your doctor a chance to channel their five year old self, finding their biggest marker pens and drawing, all over you! Pre mastectomy surgery, the trail of dashed lines around my chest area resembled more of a treasure map, there were even two X’s to mark two spots on this one, but with radio the same thing applies, except this time the dots they draw, though small, are permanent. So, there you go, you even get a tattoo thrown in, its all just so rock n roll!
If you are having external radiotherapy, a simulator machine may be used as part of your treatment planning. The simulator moves in the same way as the machine that will be used for your treatment. It uses X-rays to take pictures so your treatment team knows how to position your body when you have your treatment. Most patients will have a computerised tomography (CT) scan to help the oncologist target the tumour accurately. After this CT scan has been performed the radiographer may put small but permanent ink marks on your skin to ensure the treatment area is targeted accurately each time.
A diagram I was given by Parkside Hospital before I started my first course of radio.
After a relatively smooth first round of radio in 2007, lasting seven weeks, daily, at The Parkside Oncology unit, I never expected to have to go through this again but alas, I did, and I have to admit that the second time was a lot more eventful than the first. The procedure was much the same but having only a mere suntan line across the top of my left breast, to show for it thanks to applying buckets of Aqueous cream, which kept my skin supple, I only really suffered from feeling very tired. I cant help think this was exaserbated by the chemo treatment I had had preceding it though and as far as I was concerned, this was the last phase of a very long and challenging year and radiotherapy was a walk in the park compared to surgery and chemo. It was the last hurdle.
‘I would be laid out on a steel bed with all sorts of mechanical contraptions above me, arms above my head and the nurses would proceed to draw all over the breast area, calling numbers back and forth while they lined me up. At least I am out in a few minutes but though chemo was all about the needles at least I could lie under a duvet and scoff chips! ‘
– Diary entry 12th September 2006
Fast forward seven years and the situation was pretty different; A lump in a completely different area but still on the left side of the body, so indicating a secondary breast cancer diagnosis rather than a new or separate one. A new hospital. A husband! A house and village we had only lived in for a matter of weeks. A mysterious second ‘spot’ on my sternum on the PET scan, that was currently relying on radioactive x rays to blitz it to kingdom come or I was facing major surgery, of which I simply couldn’t wrap my head around, and an eighteen month old daughter whose routine was paramount and who I was milking frantically as an excuse to influence my future treatment plan so as to cause as little disruption to her as possible! It was going to be a juggling act and I was burying my head in the mountain of organizing, trying to tap into every possible PA skill I had.
The scar after surgery just before radio started on this area
So, the initial measuring up took much longer than the first time but still cold, a tad uncomfortable and very clinical. The staff had to be so accurate so I lay there, staring at the mouldy grey boarded ceiling, counting the worryingly large holes and trying to work out what lay beyond, in the depths of the dark abyss between this room and the one above, to distract myself from feeling like I had been playing sleeping lions for half an hour! After the kindergarten activities of the countless nurses and students, drawing all over me with various different coloured markers, I was finally allowed to let the blood drain slowly back into the crick of my neck and was told I could dress. My sister was pregnant with her second baby and I knew she had an important scan at the other end of the hospital and she was on her own, so I made a mad dash to be with her. The contrast of being in a cancer ward to being on the pre natal ward, though hard, was refreshing and I found it to be surprisingly well timed, helping me focus on life.
I was sent my dates and details of the radiotherapy schedule a few days later. Seven weeks of daily blasting were plotted before me in a neat little grid. It was ironic really since this part of the treatment felt exactly like living from box to box. I had been given a choice of timings and opted for 12pm each day as I knew my daughter would be napping at this time and would never notice I was gone. We got two days of childcare in place and mum would come for those times on two other days while the fifth day was up for grabs and friends never failed me, offering support to sit in the house while I drove at lightening speed to my dear little sunbed, got my daily zapping while visualising lying on a beach on a desert island, sipping cocktails, and then sped back so she would wake and I would be there, as if nothing had happened. Ta da! The tight daily schedule was like living between straight lines, which was good to keep me focused but only highlighted by the area plotted on my skin and on that piece of paper, magnetised to the fridge as a reminder that this was only for a short time.
Paperwork with my dates and times
My first day of treatment second time around, was pretty memorable. Aside from having a run in with the car park attendant, whose less than sympathetic ear failed to grasp the fact that surprisingly I didn’t have previous knowledge of where my ‘special radiotherapy parking’ space was, left me feeling a little more vulnerable to say the least. On managing to squeeze my car into the most awkward of spaces (my ‘special’ space was unsurprisingly occupied it turned out!) I took a breath and walked into the ward. It wasn’t what I had expected and I felt the ground wobble a little under my feet. The corridor was a sea of patients, no wall space or chairs to be seen and there I was, little old me, young, fresh and ready to go, with a smile sliding ever so quickly off my face, which was fast resembling that of a bunny caught right in the headlights… of a jugganaught lorry!!!
I hadn’t wanted to take anyone with me. The inconvenience to me was enough, so to ask anyone else to accompany me seemed futile as most days I was hoping I would be in and out in a blink of an eye. I also had that common feeling of wanting to protect my friends and family. On this first day, I wish I had ignored my own advice. It was quite daunting and over whelming. I remember literally shoving my head into my bag, in an effort to find my ipad and telling myself just to do something, anything! I had to distract myself and as I did, I heard a gentleman’s voice pipe up from a few seats down on my left, ‘Excuse me love, is that a TV?’ I have never wanted to become as invisible as I did then, but I blinked away the tears and turned to face the man whose voice had just reminded me I was as human as the next person here and we were all in this together. I nodded, dutifully turned the frown upside down and after stuttering loudly over two other, just as frustrated patients, I got up and began a rather lengthly detailed demonstration to dear Pete and Dorris, of how to use an ipad. Who knew I would be advertising the benefits of Apple products to an OAP?! He was a breath of fresh air, a lovely man whose attitude was remarkable and who, with hindsight, I really believe I was meant to speak to that day, if not just to give me a sense of positivity but I felt I had made my first new ‘corridor friend’.