Brain Cancer , Teenagers with Cancer

Hi Cecily and welcome to our community

Just over a year ago my son was diagnosed with a craniopharyngioma after he said he could not see out of one eye. Fortunately this is a benign tumour but he did end up needing two brain operations and then went through 5.5 weeks of proton beam therapy. Since the operation disturbed his pituitary gland he is now steroid dependent. 

Bizarrely my wife was talking to a neighbor from over our road and it turns out he had the same operation many years ago with the same consultant so that is something positive.

My main experience of cancer is with my wife who has Leiomyosarcoma and so having been of these forums for some years and even our son having quite a lot of experience with Janice and occasionally me in hospital he was perhaps more accustomed to things compared to the average. 

One of the things I found quite useful was some of the advice in your feelings when someone has cancer. I ended up doing a living with less stress course that really helped me. The idea of living in the moment, day to day was quite helpful. The conscious breathing techniques helped when life decides to throw another curveball at us but also was quite good at being able to relax when I needed.

<<hugs>>

Steve

Hi Cecily. I don't have any experience of the type of cancer your son has - my daughter has been fighting a rare and aggressive breast cancer for 18 months now. But I just wanted to say welcome to the forum and how sorry I am that you're having to deal with this. The early days are beyond heart-breaking, when everything is so new and you don't know what's going to happen - and you're just so terrified. I do still have low days, but am managing better now.

Sending you love and strength, and very best wishes for your son's successful treatment.

Hi

So sorry you are going through this. As a parent it is the worse thing to see your child suffering.

I have a 22 year old daughter with synovial sarcoma (now metastatic), she was diagnosed at 17 & has had many operations and is currently on a 4th type of chemo. Like your son she is determined to live life to the full and with fantastic support from her school and uni she graduated from uni this year. I also cannot praise the Teenage Cancer Trust staff highly enough (there is a unit at the hospital she is being treated at) they have given her a tremendous amount of support and enabled her to meet others of her own age who share similar experiences & can also help in many practical ways.

My daughter is doing further study away from home while still having treatment so I am constantly worrying about her. Like Steve I have also done a living with less stress course which was helpful.

Hope all goes well with your son's treatment. 

Affie

Thankyou ..I hope he gets to meet some other people in his situation.   He is not ready to seek it, but I can see how it could be if great help. I found  great  comfort that your daughter has got to do so much  . ️

Affie, your daughter sounds amazing! She is achieving so much.

I agree, it's just heartbreaking to watch your child suffer and not be able to take that hurt away. You can only be there for them.

Sending love and strength - we all need buckets of that every day. xxx