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Childhood Cancer - Carers UK Forum

Childhood Cancer

For issues related to specific conditions and disabilities.
Hi, my son is in that limbo land where treatment has finished, remission has been declared but he is still not 100% fit. Image Any advice anyone?
All that remission means is that the cancer is not there at the moment. It doesn't mean that there is no impairment left behind, depending on where and what the cancer was and the methods used to eradicate it.

Your son is not fit - he has medical issues as a result of treatment for, and having had, cancer. It doesn't just go away and leave you 100% afterwards.
Thank you!

One of his biggest disabilities is that he looks so well. No-one really knows what's going on inside though. They can show us his MRI and say there is some residual tumour but it's not active. Everything else is a guess.

The tumour is on his soft palate. Surgery is not a possibility. He's had 12 months chemo and he's had full dose radiotherapy. His pituitary gland was within the margins of the radiotherapy so eventually he will probably need growth hormone treatment. The radiotherapy will have affected how his face develops too so it is possible that he may need plastic surgery. His teeth have been ruined so he'll need some work done on those too.

He gets tired easily and can't keep up with his peers. He still gets pains in his legs when he's walking which is a side effect of one of the chemo drugs, a side effect which should only be short term (but how long that is we don't know).

He has ENT problems and will easily pick up any virus relating to that area.

He doesn't always sleep terribly well either, so if he doesn't sleep neither do I!

But at least he is ALIVE! Image
Hi Rie,

In case you don't see my reply on the other topic, lets hope that the sun shines on you and your little boy too, you sound like a fabulous Mum.

Love Bluebird Image
Thanks Bluebird. I did see your other post and I appreciate your kindness.

I enjoy being a mum because my son makes it a pleasure. He is such a fun character and we have a lot of laughs.

Rie
Finally I've got a doctor to admit that my son is suffering late side effects - unfortunately the consultant still implies that I'm being over protective.

If I hadn't have been persistant when my son was first ill, his symptoms would not have been investigated, and he would not be alive now - surely I'm entitled to champion his cause just a little bit????

Rie x
Hi Rie,
As a Mother you know your son better than anybody, if you think something is not right then persist until you are satisfied. In this day and age I don't think there is such a thing as being over protective, we all want our children to be as safe and well as they can be. You are a brilliant Mum.
Big hugs,
Karen x
Thanks Karen. It's sometimes difficult especially when I'm under pressure to get him back to school. He's only done a few days this term but I can tell he's not well. All the colour drains out of his face mid afternoon and that's that. He says his body "deactivates".

Anyway, time for me to deactivate now or I'll be fit for nothing tomorrow.

Image
All too often it's mum who is "overprotective" or "neurotic" when there truly is a problem.

And if the professionals would only listen, the child's problems can at least be helped, and mum will immediately be "cured"!
Remember that saying mother knows best, ive said that a few times. Nothing wrong with being overprotective, is that what a lioness does with her cubs Image ......Would all these professionals like us not to care Image