Skip to main content

Radiotherapy Cancer Treatment

A very surreal day was had on Thursday 22 September 2016, when Ryan spent a day at Velindre Cancer Centre, Cardiff in their Mould Room where he had his personal mask made for his impending 5-week course of radiotherapy (RT).

Ryan then had to endure another CT scan to mark the mask up for the lasers to do their thing. He will be having 50gy in 25 fractions. One session every day Monday to Friday for 5 weeks on lymph tissue in his tonsil and throat areas. 
Side effects will be his ability to swallow. Loss of taste buds. Salivary glands dry up, sickness and extreme fatigue, all of which will begin around 2 weeks into the treatment and last for 3-6 weeks after treatment has finished. 
He is also having RT first and then Chemotherapy which I understand is usually the other way around so not clear on why the change is happening. I believe it is because he is not well enough to begin IV chemo and has been on steroid chemo up to now in an attempt to build him up a bit, but I do not see that it has worked. If anything, he has continued to deteriorate.

We went back into Noah's Ark Children's hospital on Monday 3 October 2015 to have his nasal gastric (NG) tube removed and a percutaneous endoscopic gastrostomy (PEG) feeding tube fitted instead ready for RT.

So much has happened in such a short space of time. I cannot see the woods for the trees. I find I do not have the confidence to distinguish between what is the disease and what is general teenage grumpiness or what was something as serious as Sepsis and I did not realise he was 'that bad' so feeling a bit useless right now, but trying to accept it is all a steep learning curve.

We finally got to start RT which has been a breeze. The sessions he missed last week due to the Sepsis have been 'added' on to the other end so his last session will, unfortunately, be on his 15 birthday. We have however arranged for Dreams and Wishes to deliver his first-ever new phone that day as a small positive.
The Anti-sickness tablets are working well, but the mouth ulcers are awful, bless him. We have 3 different types of mouthwash to use each one twice a day plus 2 different pain medications, gastric tablets, anti-sickness tabs, dioralyte and 2 different laxatives. 🙈
To help with the side effects to his mouth, it was suggested Ryan try a soft electronic toothbrush to help with his oral hygiene. I took him shopping where he chose a Spiderman one. I thought it was funny at 14 years old, but if it helps him to brush than who am I to judge and he has been using it well ever since.  One of the mouthwashes, however, did not go down so well.

Caphosol I admit doesn't taste particularly nice (I tried a bit), but to him, he said it is like the fires of Mordor. That was the first wash they gave us. So, then we went to chlorhexidine, but that dried his mouth more. Next was a homemade saltwater wash and now we have benzydamine and gelclair to try. Gelcair didn't even get off the starting block, but the benzydamine (Difflam) has been a trusty faithful throughout his treatment to date. 

Radiotherapy is the easy bit. He just lays on a bed for 10 mins and the beam does its thing. There is no pain, he can't feel it.  It is the side effects hours after, where we sit at night as I gently rub his back while he vomits huge amounts of mucus as the tumour breaks down. Before any of this, he already had serious issues with sensory processing due to his autism, resulting in sensitivity to tastes and textures, in addition to hypersensitivity to noise, light and touch.  He is 15 years old and he had only ever once hugged me in his life and I have never had a kiss, so you can imagine how difficult it is for him to have medics fussing around him, noisy machines, bright hospital lights.

It is dreadful to go through cancer treatment and made worse for him when these 'ordinary background sounds/lights/touch that we take for granted are physically painful for him. For the majority of his treatments so far, they have had to sedate him where possible. He is doing amazingly well considering. He has had a couple of minor meltdowns but who wouldn't. We will get there. It is just 1 step forward and about 5 backwards at the moment. 

Radiotherapy Mask Moulding
Radiotherapy Mask Making


  1. What the continuing saga has brought home to me, so vividly, is that I did not realise, in the early days, how seriously sick Ry was. It seemed like a bad sore throat - OK, so a bit of tonsillitis - course of anti-biotics and he is off and running again. But NO. In spades! It escalated to something I never imagined in any worst case scenario. Words cannot express my feeling of helplessness.
    Ry is the Number One thought in our mind this Christmas. Stay in there lad - we are all rooting for you. Love and best wishes.

    1. Such kind and true words. When he was referred to ENT I genuinely expected a tonsillectomy, a couple of weeks off school, all good. Instead we got a biopsy, sepsis and peritonitis. He will win the war. x

  2. Read - as ever - avidly. Thanks Sarah. Love you.

    1. Apologies for missing this reply. Thank you so much for engaging with us on our journey. Glad to have you along for the ride.


Post a Comment

Thanks for your comment. We appreciate having you along for the ride.

Popular Posts

Missing Education due to Illness

The Importance of Attendance If you read any news articles on education, correspondence from your child’s school, or are simply clued up on parenting then you will know the importance of school attendance. Schools place a great deal of focus on targets and will often offer incentives and competitions to encourage and increase attendance figures, but what if your child has a serious illness. What happens if they really are not well enough to attend school. What happens then? Attendance targets at Ryan's school are currently set at 95% attendance for the school year. Therefore realistically your child can only miss 10 school days due to illness. Medical appointments such as GP or Dentist do not count, but you are encouraged to make these appointments outside of the school day where feasibly possible. If your child consistently misses school, even if it is only one day a week, that equates to 39 days over the school year. Even missing one day in a week results in pressure on the

Questions to ask after Cancer diagnosis

Cancer Sucks I have shared with you Ryan's lymphoma journey where we have talked about the ups, the downs, the protocols for drugs, the side effects, but I realised recently I have never shared the questions. This post is all about what to ask when you receive a diagnosis of cancer. Receiving a cancer diagnosis is never ever going to be seen as good news. It can never be dressed up or made pretty. It is devastating, it is gut-wrenching, it is life-changing. There is so much information to process you will not think of the questions you need to ask or you will have hundreds of questions you want to ask all at once. These are just some of the questions you can ask once you have processed the news, in order to gain a better understanding of your fight ahead. General Information What type of cancer do I have? Where is it located? What are the risk factors for this disease? Is this type of cancer caused by genetic factors? Are other members of my family at risk? What lifestyle c

3 Years in Remission

  3 Years in Remission In May 2017 Ryan finished his 6 gruelling cycles of Chemotherapy and was in remission for 3 months before his cancer returned in September 2017. I wrote about our first 3 month cancer free milestone in our blog post here . In August 2020 Ryan once again finished treatment. This time he completed 3 years of Immunotherapy treatment and in November 2020 Ryan had tests done to confirm he is once again in remission. This is, of course, outstanding news but we were muted in any celebrations as it was such early days and we had been here once before. Ryan has been having regular check-ups every 3 months and in May 2021 we were able to confirm he has reached the 9-month milestone which was phenomenal news. Massive Scare - Relapse #3, ALMOST. Tuesday 4 October 2022. Ryan mentioned to me about an Ulcer on the roof of his mouth. I took photos and monitored for a couple of weeks before we start to panic too much.😳 Thursday 27 October 2022. Sadly Ryan has had to have yet a

Swansea Community Farm

Swansea Community Farm In April 2021 Ryan began volunteering at Swansea Community Farm (Welsh - Fferm Gymunedol Abertawe). For now, he attends one day a week on a Tuesday from 10 am to 4 pm but there is a possibility that he could also volunteer on Thursdays as well also 10 am to 4 pm. About the Farm Swansea Community Farm is the only city farm in Wales set in 3.5 acres of land with a variety of animals, an allotment, wildlife habitats, beehives and a café. The animals include donkeys, goats, sheep, ducks, geese and chickens. The farm aims to improve wellbeing, build skills and create a sense of community engagement by caring for the animals, producing local food and caring for the local environment. Duties Ryan has enjoyed a variety of different duties so far. He has walked the Donkeys, Sheep and Geese from their barns out to their fields and pond. Collected eggs from the Chickens, and has mucked out the donkey sheds. He has also cleaned out the chicken coops, cleaned and refilled all


By Ryan I like photos. Well the detail and how realistic you can get them. Instead of going out and looking at them yourself you can easily just find them, but doing photography you do that yourself. In a good picture I look for detail and how good it looks, which comes under detail actually, lighting, depth, what’s in the background, what’s the main focus of the picture that type of stuff. Possibly my autism has helped me to see the detail in making a good photograph. I looked at it a bit more. I can see deeper into the picture. I get the meaning of it. I can see why somebody took it either for the beauty of it or just for fun maybe. With my photography I am not having to interact with people or do the social thing that I find difficult. It’s a project I can do by myself in my own time.  My photos don’t involve people. I prefer wildlife and landscape photography instead. I don’t take photos of animals even though I like them because well fi