Back in 2016 I was diagnosed with a rare form of Bowel Cancer, there were only 2 cases of it at the hospital where I was under. My Oncologist explained all the details about the diagnosis but I think I found out more by doing my own research. As a part of my treatment I was offered chemo-radiation, this is a treatment that means I was to have radiotherapy alongside taking chemotherapy tablets.
Radiotherapy is the use of controlled, high – energy radiation. It is offered alongside chemotherapy as it makes the cancerous cells more sensitive to the radiation.
I was told that I would have radiotherapy first to try to shrink the tumour before surgery, as this would make it easier for the surgeon to remove it. My tumor measured at 3 cms and was close to my rectum, sitting on the sphincter muscle – which controlled the movement of the bowel. The tumor was very close to the skin, so close that it could be felt from the outside.
From receiving my diagnosis til the first day of my radiotherapy it took two weeks. Those two weeks were the longest and slowest ever. Just think, You have been told that you have cancer and then you have to wait a few weeks until you can start you r treatment. All I kept thinking was, that it was more time for it to grow and worsen my diagnosis. Within that time I had a colonoscopy, an ultra sound on the local lymph and I had to be measured up to the radiotherapy machine.
A Linear accelerator machine used to treat all parts of the body by delivering high energy beams/electrons to the region of the tumour. It has several built-in safety measures to ensure that it does not deliver a higher dose and is routinely checked by a medical physicist to ensure that it working properly. Everyone has their own personal treatment plan that has been decided by the doctors on how to deliver the prescribed dosage and calculated time that you will be under the machine.
Tattoo for life Before meeting LINAC I had to be measured up in a CT Scanner. This is when i received a tattoo, which was marked on my body by a small pen. This tattoo never fades and is a sign of what you have been through. A mark that will never let you forget. These marks were where the beams would be directed and used to take measurements for the plan of treatment. I was given three little dots on my skin; one above my pelvis, and one either side of my pelvis. The radiographer used red laser beams to measure them up. I laid down on a couch that had a scanner around it. This would be the position that I would be laying in for all of my treatments. I was under the machine for about 3o minutes. I didn’t feel anything, just heard the sound of the machine.
For my treatment I had to have 25 sessions of radiotherapy. That was every day, monday to friday, for five weeks. I had the weekends to rest up.
Before my first radiotherapy appointment I was able to sit down with someone from the radiographer team and discuss what time of the day would suit me for my daily treatments. I was given a leaflet which told me about the process, what to expect and what side effects I could get. I asked for early morning sessions as then it would be easier for me to get some rest before the children came home from school.
As my tumour was in a very sensitive area, I was told to expect some very severe soreness after week 3. A mould was made to place over the skin to protect it. This was made up for me.
I was given my time-table with all the dates and times printed on it and what LINAC I would be on. The hospital had a few.
I had to drink 750ml of water 45 minutes before going in the machine. I had to hold this in my bladder until the session had finished. This was so that I kept my body hydrated and so the scanner could create detailed images of inside my body. When I turned up to my appointment I was told when to drink by the radiographer. This I found easy for the first few weeks, it then started to become harder as the time went on. I was struggling to hold my bladder as the radiotherapy was burning away my insides.
My first session felt like it went on forever. I remember laying in the machine and counting how many times it went round me and guessing in what direction it would take next. I was in the machine for about 15-20 minutes, It took a while to make sure that I was in the correct position so the whole process could take up to 30 minutes.
My family decided between them that I wasn’t to attend my sessions alone, so there was always someone waiting for me outside in the waiting room. Ready to have a normal conversation with or just be there for me.
I remember talking to the machine as it went round me. Telling it how I just wanted more time with my family, how I hoped that It wouldn’t miss a cell and to make sure that they all went. As I laid there I began to think it was answering me back. Listening to me. I remember the sound of it going round and round. I could hear music in the background. I told the machine to be nice to me and I would sing to it. Silly eh! How can a machine listen to you. It felt like it was the only place I could talk about my feelings without being judged or told to stop being silly. I had to lay there as still as I could, which is hard when you have to think about it. You always get an itch somewhere or feel a twitch in your leg.
Everyone was so nice and welcoming. The staff was helpful and friendly and always smiling. The other patients in the waiting room made conversation, even if it was talking about what brand of coffee they were drinking, it was small talk and just what everyone wanted. There was a sense of calm in the oncology department, quiet at times when you needed it. I almost felt like I belonged in there. People around me who I could relate to, who could understand what I was going through. It was as if I could see them walking around with a big question mark hovering over their heads. We all had the same thoughts, thoughts that we didn’t share with close family and friends but what we transmitted through our eyes. Sadness and hope.
I had lost hope in my body, I had lost my way in life. It was like the waiting room was my refuge. I needed to find strength from the people around me, the strangers in the waiting room and from within.
Hours quickly fell into days and the days into weeks. Not long and I had been going for a month. It seemed normal to get up and make my way to the hospital. The oncology department was at the back of the hospital, away from the busy part, almost a different building. It was like we were being hidden away from everyone. Kept to one side away from normality.
Side effects The side effects were harsh. The last week I laid in bed crying and only got out for the appointments and to got to the toilet. I didn’t want to drink as it burned when i passed urine and walking became impossible with pain. My skin was so sore that it was blistering and peeling. I was given a cream to apply to the area, but that was only because a friend advised me on what to ask for. I was told that my skin would become red like it would do from sunburn, but I didn’t expect it to literally burn away. The only ease i got was when I let air to it and applied the cream. I gave up on wearing underwear and only wore loose clothing. I had to take imodium tablets as it was playing havoc on my bowels. I was so tired all of the time and some days slept for hours. I could be having a conversation one minute and then asleep the next. I welcomed the weekends as it came me respite from the treatment and by sunday evening I was becoming to feel normal again, only to go back to treatment the next morning.
I had to drink as much as I could in order to stay hydrated, I tried to drink at least 2 litres a day.
Long term effects My bladder became weak and I could no longer hold in my urine, It felt full all of the time making leaving the house hard. I can no longer have children as my tubes have been burned away and I suffer from hot flushes. I have weaker bone structures and have had physio to build it back.
Two months after treatment finished I spent 10 days in hospital due to having an Abscess due to the effects of radiation. I lost all possible feeling to go to the toilet and was in severe pain. This resulted in my operation to remove the tumor forward by Two months.
It’s been 18 months since the last day of radiotherapy and I am now nearly back to full health. I know I can no longer produce eggs to have more children, but I already have three wonderful boys, so that’s not a problem for me. I still suffer from hot flushes but they say that I may be going through my menopause early due to radiotherapy. I often get tired, but I just remember to take it easy and rest. I drink at least 2 litres of water a day and eat a healthy balanced diet (although I stay away from processed meats and pre prepared meals). It’s hard to look back and reflect. I need to share my experience, not only for myself but for others too.
Please feel free to contact me if you want support.