I must describe my treatment first before I start week 2 of my diary.
I go into the treatment room where there is a medical table, surrounded by the £1million machine. I remove my tops and lie on the table. I place my legs over a support (I think just for comfort). Next the radiographers chat with me briefly about what they are doing for my treatment that day. My mask is then placed over my head and I shuffle about until I am in place and then my mask is bolted down. The mask is pressed very tightly around my face, neck and shoulders. I am unable to open my eyes as the mask presses down on them. Normally I can feel very gentle touches on the mask as the radiographers place markers on the mask and call out coordinates as they position the machine correctly. Some days I have to have CT scans taken to check that I am positioned correctly. This means substantially longer in the mask and can take five to ten minutes. This isn’t done every day but did happen on my first four days and then once a week for the remainder. After the photos (if needed) they return to the room and make final adjustments for my treatment. I cannot see anything that’s happening around me but I can hear the safety gate opening and closing as they leave or enter the room.
My treatment only lasts a matter of seconds. My first shot of radiation lasts about 13 seconds and is accompanied by a very bright light than shines through my closed eye lids. You then hear some movement of the machine before the longest 17 second blast comes. This is the blast that also comes with a pungent sickly smell. The third blast must be aimed at the side of my head, towards the back as I don’t see the bright light on this one. It lasts for another 13 seconds. In total Kerry and I have counted that I only actually receive 43 seconds of actual radiation treatment a day.
Day 6 – Monday 13th October 2014
After a terrible weekend of worry I started a fresh new week. Our first task was our now weekly, Monday, meeting with the dietician, a specialist in neck/mouth/swallowing, and a head and neck cancer nurse. A lot of the meeting was about my general welfare and how I was coping. I had a few tears as I was explaining that I wasn’t coping well and I was worrying all the time. They were encouraged that I was still eating normal food. I was offered counselling and further support. It’s something that I will definitely consider. They also offered support for Kerry if she needed it.
Day 7 – Tuesday 14th October 2014
The challenge of forcing me to get to the hospital was truly immense. I would have given anything not to go. I can only describe the experience every day as
Being asked to go and stand near a furnace on day 1. On day two you return and they say that every day you must stand one inch closer. But I am thinking ‘hold on that’s already burning where I was stood yesterday’.
That’s my best way of describing how my mind is thinking every day – I really don’t want to go as it hurts, it stings, it makes me feel sick, my mouth is dry, all food taste s awful, my mouth and face are swelling, and the results get cumulatively worse every day.
Mentally this is like torture!
When I entered the radiography room I managed to have a chat with them about some of my concerns. One of my main worries was how ‘sunburnt’ my face was feeling and how I was worried what another 23 treatments would feel like. The radiographer was surprised that I was shaving every other day and suggested that shaving less would leave my face less sore. This was my first small ‘high’ for the week. All of the literature talks about the need to use an electric razor to shave. I had gone and bought myself one and assumed I needed to be using it regular.
Whilst I was on a role I also mentioned the foul smell that I get when the second 17 second beam goes on. It’s hard to describe the smell other than to say it’s not very nice. It is that smell that I get when food is cooking etc., this is the smell that is making my feel nauseas. I explained that I was worried it was the smell of ‘burning flesh’. The radiographer calmed me and said that it was ‘ozone’. So of course I looked it up
http://en.wikipedia.org/wiki/Ozone
Just knowing that the pungent smell wasn’t anything horrendous, it helped me to relax more during the treatment.
Day 8 – Wednesday 15th October 2014
A strange day as it was my first time travelling up without Kerry. My good friend who had played a lot of football with over the years took me up. My friend had lost his first wife at the age of 35 to cancer and had made this trip many times with her. It couldn’t have been easy for him to take me, and I am very grateful for his help and support on the day.
I think that going with someone else may have helped as I didn’t want to cause them any fuss. So I went straight down and had the treatment. I didn’t feel great in the car on the way home so we decided to head straight back instead of our scheduled stop along the way. I went straight to bed when I got home.
Day 9 – Thursday 16th October 2014
One of the head radiographers spent a good 15 minutes chatting with me before today’s treatments. I got to chat with her about most of my concerns and how I wasn’t sleeping, the pain etc. This chat really helped. I was told to up my medication and also take them more regular.
The night before I googled radiotherapy side effects and discovered that radiotherapy to the head and neck was very severe and caused a debilitating side effect called Mucositis. This is only seen in patients who receive chemotherapy or radiation to the neck.
http://www.oralcancerfoundation.org/dental/pdf/mucositis.pdf
Day 10 – Friday 17th October 2014
I have now got into a bit of a routine when I return home from the treatment. I take my painkillers, cover my face in aqueous cream and head straight up to bed. I have been sleeping for 3 hours in the afternoon and then getting up to have some of the lovely meals that have been delivered. It’s not great but it is helping me to cope.
The next 4 weeks look like a marathon of time and I have to say that it scares me beyond belief. I have never been so anxious in my life. Kerrys support has been fantastic every day. I tend to drive up and Kerry drives back as I normally start to get tired by Dorchester on the way home.
On Friday evening I did a lot more reading on mucositis and have convinced myself that there are ways to combat the effects. You cannot stop them but you can lessen the impact. The main way is to follow a very strict dental hygiene regime. This is why my teeth were removed before the treatment started. It would be impossible to keep those teeth at the back sufficiently clean.