Radio Gaga Part 2

Radio Gaga Part 2

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After being told that three out of the four machines were down that day and the delay was two hours long, one look at my horrified face (after interrupting me in full flow of IT demo with Doris and Pete) it was quickly decided that I should return the next day and start afresh. I left feeling totally drained and practically wheel spinned out of the car park much to the disapproval of Mr Car Park Attendant who was still loitering around.

The next day I didn’t take any chances. Luckily, I had had some reflexology booked in and after tearfully recounting the day to my counsellor of a reflexologist, and having a fantastic calming session, I was packed off armed (and dangerous), with a holster of aromatherapy oils to sniff on various tissues, books to read, iPads to write on and headphones to drown out the voices, while listening to calming meditations I had spent hours downloading the night before.

Unlike the day before, I swung freely into my ‘special’ parking space after making sure Mr Car Park Attendant wasn’t around and skipped confidently into the ward and literally stopped dead in my tracks. There was no one there. Not a soul. It may as well have been a completely different hospital. A lovely Sister promptly came over and invited me into a private room to chat and go over my treatment plan and x rays, apologising profusely and explaining that the day before barely ever happens! It was like I was in a parallel universe.

This was only exaggerated by the general feeling of surrendering to aliens as I climbed aboard the radiotherapy machine a mere few minutes later. After undressing and putting on the all too familiar blue dotted hospital gown and waiting briefly back in the same chair as previously, I was called into my assigned treatment room. The machine’s formal name is a Linear Accelerator (doesn’t it even sound sci fi?!) and it’s similarity to some sort of spaceship was ironic. With a long tongue that is actually the treatment bed you lie on, I felt like ET about to hover off to some other planet somewhere.

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The LINAC uses electricity to form a stream of fast-moving subatomic particles. This creates high-energy radiation that may be used to treat cancer.
– Cancer.gov
Lying on my back with my arms above my head (and prepared for another dose of pins and needles!) I would stare above me, feeling as if I was lying beneath some space ship, looking up at this huge machine that was about to spit out radioactive light right at me and beam me up! The radiation therapist would make all the checks, lining me up accurately. I had to keep absolutely still for the entire time, so itchy noses were a definite no no! The area measured on my body was reflected in the pattern on the lens above me which covered a large area of my sternum, chest and throat. I had also been warned that it may cause burning to my back too as the rays go straight through to the other side. Well, what do you know, I get a lovely brown left shoulder blade too, better get out the after sun!!
The whole procedure reminds me of launching a space rocket, or indeed a UFO! Once all the checks match and are so bang on there is no room for error, the machine turns on and the unit above is lowered down towards me. 5,4,3,2,1! Houston we have lift off! I’m not claustrophobic but its a strange thing, feeling as if you are about to be sandwiched between two pieces of rather heavy medical equipment. Talk about personal space! Once this is at the exact height necessary, the alarm starts buzzing and a red warning light flashes on the wall and the therapists leave the room. It’s like a mini evacuation process, except you are the only one left behind while the radioactive light is beamed through you. I always found this bit tricky as I always felt rather alone and isolated. With eyes shut tight, I would breathe deeply and surrender to the medicine, letting it do its work.
During treatment the radiation therapist continuously watches the patient through a closed-circuit television monitor. There is also a microphone in the treatment room so that the patient can speak to the therapist if needed. Port films (x-rays taken with the treatment beam) or other imaging tools are checked regularly to make sure that the beam position doesn’t vary from the original plan.
– http://www.radiologyinfo.org

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Information I was given for my radiotherapy treatment from Parkside

The buzzing sound that resonates from the machine as it radiates through the skin is loud and bloody annoying! As I would lie there feeling like some kind of cardboard cut out, I would do some visualisation. I learnt a lot about the use of this during my periods of treatment. It was so important for me to take myself out of the clinical environment and imagine fluffy and positive things! I would visualize the rays successfully burning any rogue cells away some days and others I would like to imagine lying on a beach while the light would be the sun shining down on me and filling me with glorious white light, while ignoring the harsh buzzing that I would pretend was an aeroplane flying over or something equally as irritating!!! The imagination ran wild!

The high-energy radiation used during radiotherapy permanently damages the DNA of cancer cells, causing them to die.
Nearby healthy tissues also suffer temporary cell damage from radiation but these cells are usually able to repair the DNA damage and continue growing normally.
– NHS

This time around my side effects were a lot more obvious. As the treatment affected the sternum and bottom of the throat area, I did find it hard to eat after a couple of weeks. I wrote in my diary two weeks after starting;

My chest is feeling dry today and Ive noticed when Im busy or tired, like often in the early afternoon, my throat and chest feel sensitive, sore and dry. The skin is a little red and sore and Im much more aware of it…… I feel a bit frayed around the edges’
– Diary 18th September 2012

I remember that eating a chicken curry took an hour and not because it was spicy! It felt like I was swallowing rocks. I had embarked on a mindfulness course at The Haven and we had to do an exercise about eating mindfully. This, for me, was not a problem while undergoing radio on this area and I could use the time chewing relentlessly to ponder all things mindful before swallowing and wondering why I hadn’t just made soup!!! I was quite sunburnt on my chest and shoulder bone behind and a small cold turned into a painful chest infection since it went straight to the weakest area of me, but with doctors on hand and nurses checking up on me every day, I could take medication to help more affectively than normal and advice was simply to just take it easy. Always easier said than done! It was tiring, trying to have as normal a routine as possible with a new home, village and small child, while the anxiety and side effects bubbled under the surface, literally!
Despite all this, I met some amazing people while waiting in that corridor. I realized that there is so little written about radiotherapy from a patients point of view, and what it involves. I wanted to share that with others because even though it is part of a cancer treatment, it is an incredibly clever, complex treatment that is so much less invasive and though more clinical than chemo it tends to be more straight forward and less time consuming on a daily basis then one may imagine. Bizarrely, there was another young girl who it turned out I had been to sixth form college with and we would reminiss about our media trip to Paris and often comment on how we felt so young in that corridor. It was wonderful having her around and she gave me great strength being there to either welcome me out of the session or wave me goodbye as I went in. I felt very lucky to have had a hand to hold during that time.
Any cancer treatment is challenging. Its putting you and your life under a microscope and monitoring you from day to day, in a zone totally out of the comfortable! It can be tedious and the side effects can be taxing but it is there to help your body fight a disease that it cant necessarily do alone. Being in the hospital every day, with all those different patients, taught me that medicine is a wonderland itself. It is constantly changing, improving and saving lives. There is so much going on behind the scenes and I have witnessed this now a few times!  It is amazing what it can do and our own individual experiences of it can only prove to us how inspiring it is. As traumatic, frustrating, scary and alien it can be at times, these experiences have enriched my life and made me think so differently. As I write this now and reflect, I only hope that those other patients my path briefly crossed with in that corridor over those seven weeks, are well and happy and that dear Pete finally got his ipad! X

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Radio Gaga

Radio Gaga

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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. 

Part 1
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.

 

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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.
-NHS.co.uk

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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.

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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.

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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’.

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