This is where it starts to get difficult for me to write. The memories are difficult. What I can remember is painful and some of the important details are completely missing from my memory. I guess that’s a coping mechanism. I will try to piece some of it together though.
With my son being a teenager, he was too old to be treated at Great Ormond Street Hospital this time, and so he was taken under the wings of Teenage Cancer Trust at University College Hospital London instead. The same hospital where he had the radiotherapy which caused this bone cancer. Obviously I don’t blame them, they were just trying to save his life. There’s an irony there though.
The chemo was grim. I can’t remember the names of all the chemo he had, but one of them (Methotrexate) really messed with his head. It was just horrible to watch him suffer.
When he had his first round of chemo, one of the physiotherapists thought it would be a good idea to get him exercising. It was a bad idea. It just seemed to pump the chemo round his body faster and made him feel terrible very quickly.
Teenage Cancer Trust were all for encouraging social activities, but my son just hated it. He passed the time by listening to music and watching YouTube on his iPad.
His appetite went, as predicted, and he resisted an NG tube for as long as possible. He had started his treatment with plenty of weight on him, but he became skinny quite quickly.
I do remember that whatever anti sickness medication he had worked far better than we had known before. That was one good thing.
There wasn’t much of a break between each round of chemo, and he was very susceptible to infections again.
Now that he was older he was a lot less accepting at times, which was understandable. He asked the inevitable “why me?” and it’s just impossible to answer that. He did ask to have a break from his chemo as well at one point.
His body had already had a lot of chemo (twelve months for his Rhabdomyosarcoma) and was under a lot of strain. The oncologists kept a close eye on his heart and kidney functions and other organs, including regular hearing tests.
It does make you wonder just how much the human body can take.
One of the worst days was when he had mucositis and low platelets. His ulcers started to bleed and wouldn’t stop. It was an emergency. He was stabilised at our local hospital (who were fantastic by the way), but they couldn’t keep him there because they didn’t have a paediatric oncology department. This meant he had to be transferred to another hospital via ambulance, with blue lights and sirens.
The oncologists did have to halt his chemo early, so he didn’t have the total planned number of rounds. He had a couple of months to recover and then he had major surgery to remove what was left of the tumour from his jaw bone and surrounding tissue.
TO BE CONTINUED …
If you’ve got this far then thank you for sticking with it. Raising awareness can be so frustrating as it feels like nobody wants to listen.