Tuesday, 6 December 2016


A very surreal day was had Thursday 22 Sept 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).
Radiotherapy Mask Moulding
Radiotherapy Mask Making

He then had to endure yet another CT scan to mark the mask up for the lasers to do their thing. He will be having 50gy in 25 fractions. 1 session every day 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 Chemo which I understand is usually the other way around so not clear on why. I believe it is because he isn't 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 don't see that it has worked. If anything, he has continued to deteriorate.

We went back into hospital on Monday 3 October to have his NG tube removed and a PEG tube fitted instead ready for RT.

So much has happened in such a short space I can't see the woods for the trees. I find I just don't have the confidence to distinguish between what is disease and what is general teenage grumpiness or what is something as serious as Sepsis and I didn't 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 uses each one twice a day. He now has 3 different types of mouthwash, 2 pain meds, 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, but if it helps him to brush than who is 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 salt water 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 15yo 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. 


  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.


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