To Ring the Bell...or NOT!

I attended Radiotherapy sessions Monday to Friday for three weeks. After the first week the process seemed to settle into a routine, it was less unknown. Still very traumatic and I had a sense of I just wanting to get this done. I was very tired after each session. It was an overwhelming fatigue that meant I always slept for a few hours afterwards. Fatigue is a common side effect from radiotherapy both at the time and also in the longer term. This is what I struggled with at the time and continue to do so. 

Click on this link for more information about fatigue due to Radiotherapy

Another common side effect is skin burns and damage. I was issued with Diprobase cream on my first attendance. I was encouraged by the Radiographers to apply this twice a day to the area being exposed to the radiation. This was to keep the skin moisturised and reduce the severity of the skin burns. I chose to be extra vigilant and apply the cream three times daily. Each time a tube of cream ran out I asked for a replacement from the staff. After the first week one of the Radiographers questioned why I was using so many tubes. I explained how I was using it. I think she thought I was stockpiling it to sell it on!  She suggested I didn’t need to use it as often (think I may have been costing too much money). I ignored this advice (bloody minded as ever) and continued my routine. After my treatments were complete my skin was in really good condition. (As mentioned in previous posts, I continued to take 2 eggs daily, extra chicken and fish to vastly increase my protein consumption as recommended by my Surgeon). The Radiographers were surprised at the lack of redness or skin breaks. All I can say is it’s all about the Dipro…….base!!! (no burning).

Click on this link for more information about skin burns and damage due to Radiotherapy

During one of my final sessions I was being escorted from the waiting area into the clinical room. As I was walking through someone rang the bell. This hangs in the waiting area and once you complete your last session you can ‘ring the bell’. (Those waiting in the area give you a round of applause). For some reason this time the significance of this really hit me. It totally threw me off my guard. Maybe I had become so relaxed and blasé about being there, that I had let my protective guard down. 

I went into the clinical room trying to hold back my tears. As I lay on the couch, arms up round my head, boob(s) exposed I started to cry. Once in this position I was to remain perfectly still, I was unable to wipe away the tears and my vulnerability and the entire situation crashed onto me. I couldn’t stop the tears despite all my controlled breathing techniques! (squares). 

At the end of the session the student Radiographer came in and told me the session was complete and I could move. I hastily tried to wipe away the tears before she could see, but I looked a puffy faced mess. She was so kind and empathetic; she reassured me that it was ok to be upset. She showed me more humanity than any of the qualified staff had up to that point….. I told her I was just tired and rushed out of the room. I just wanted to get a hug from my husband Craig and go home. I went over to collect my chauffeur for the day (Craig). As we were leaving, the Radiographer who had been dealing with me that day asked if he could speak to me in private. He explained that he was aware I was upset (the student had informed him) and if I needed any support or advice there was a support service I could avail of. He was so kind and helpful, I was incredibly embarrassed to be honest, I was just so very tired and drained both physically and mentally that my coping skills had temporarily disappeared, all because of that damn bell.

On the day of my final radiotherapy session I chose not to ring the bell, I didn’t feel strong enough to do something so dramatic. I walked past it on my way out and said ‘bong’ quietly to myself and Craig…

I had finished……….

Radiotherapy - Burn Baby Burn!!

Roughly 5 weeks after my surgery I attended hospital for my Radiotherapy planning appointment. At this appointment the treatment plan for my Radiotherapy sessions was decided.

We initially met with the Oncologist, who was pleasant if a little distant…lacking people skills may be another way to describe his manner. He explained the aims of the Radiotherapy treatment and gave us an idea of what the time frame would be.

Radiotherapy uses high-energy x-rays to destroy cancer cells. Normal cells can also be damaged by radiotherapy, which may lead to side effects like skin burns. Cancer cells cannot repair themselves after radiotherapy, but normal cells usually can.

Click on this link for more information about Radiotherapy

After the brief meeting with the Oncologist a Radiographer escorted me into a clinical room. I was asked to strip off from the waist up and lie on my back on a treatment bed. My arms were positioned and secured in arm rests above my head. The staff took a number of x-rays and scans and gave me….wait for it…..3 tattoos!!! However, they are only the size of a pin head. The tattoos are used to line up the radiotherapy beams and ensure that the treatment is delivered consistently to the same area every day whilst minimising the damage to other healthy tissue.

I was warned about the possible side effects which include fatigue, skin redness and damage (like bad sunburn) and potential risk of radiation damage to other organs near the area (heart and lungs).

The plan was to have three weeks of Radiotherapy five days a week, to commence approximately 2 weeks after the planning appointment. Over the next 2 weeks all of the measurements taken on the planning day were formulated to give me an exacting treatment plan. However, I was warned that things may need to be altered slightly during my treatment depending on how my body responded.

After two weeks I hadn’t heard anything from the hospital and had assumed my Radiotherapy would be delayed a while longer. However, they contacted me on the Friday to say I was to attend two days later on the Monday to commence the 15 sessions. It was then a frantic case of cancelling any plans I had made for the next week and organising a chauffeur schedule.

I had a lot of conflicted feelings, relief that the next stage was starting combined with the anxiety of the unknown. I was aware of all the potential side effects and this amplified my anxiety as I was unsure how my system would react, given that I am very fair skinned and burn like a crisp on a sunny day!! I found watching the ‘patients journey’ video on the hospital’s website helpful and reassuring. I thought back to my anxiety prior to commencing chemotherapy and wished they had something similar. 

Click on this link to view the Radiotherapy patient journey video

My husband Craig, my Mum and Dad and my sister Claire pulled out all the stops and I was so grateful to them for taxiing me every day. The fatigue after each session meant that for me driving myself home would not have been the safest idea.

The first few sessions were a bizarre experience, I arrived and registered with reception, they gave me a bleeper that would be activated when they were ready for my session. Some days this was early…bonus, other days it was over an hour late. Lots of people watching and opportunities to catch up with my chauffeur on those days. 

It is overwhelming how many people are also waiting for treatment, often there were only a few spare seats and there must have been 60 -70 seats in the waiting area. The age ranges and peoples appearances were often the most difficult to process. Some incredibly young patients and then sometimes some very frail and elderly. It was distressing as often the people waiting looked so ill and vulnerable. I had to be really self-focused and try to ignore this as otherwise I would have been upset at every visit.

Every session lasted approximately 20 mins and followed the same routine; I was escorted by a Radiographer into a clinical area and asked to strip off to the waist. I was then asked to lie down on a couch just like on the planning day and my arms were positioned in the arm rests above my head (I cannot properly express how vulnerable you feel lying there chest exposed, scars and all). The Radiographers adjusted my position and took LOTS of measurements, lasers were also used to guide my positioning using my tattoos.

When the Radiographers were happy with my position they would leave the room and the treatment would commence, I felt nothing and heard nothing except the x-ray warning alarm.

I found the experience of my sessions varied depending upon who the Radiographers were. Some barely acknowledged I was there, no communication and I often felt like a piece of meat on a slab. Some were really lovely and made a real effort to build a rapport with me. Some sessions I would lie there with my chest completely exposed for the whole time, other days they would remember and cover up one side midway through the session. I appreciate staff are busy but please remember I AM A HUMAN!!!!  The worst experience was the first week where I apparently kept hitting the staff lunch changeover time. Each session lasted 15-20 mins, by the end of one session 5 different staff had seen me topless instead of the normal two. This was because the initial two staff had gone to lunch and the new staff were taking over. Could this changeover not have waited 10 mins for them to go on lunch break?? This happened during at least 5 sesssions. It was overwhelming enough but to feel like I was being exposed to so many different staff felt very unfair.  To me this did not seem patient focused and the lack of staff awareness of how this was making me feel really irritated me.