HI, this is my first post, have only joined the forum today. I was looking for a group or more information about young adults with this condition.
My 21 year old son was diagnosed with a brain tumour in October. He had a craniotomy to remove at end of November and then spent 6 weeks in hospital mainly having rehab due to suffering neglect syndrome after the operation. This affected mobility down his left side meaning he is having to relearn how to move his arm, leg, hand etc. He was discharged from hospital last week and physically is doing really well and making fantastic progress with his mobility.
The day after his discharge we received the final biopsy results which diagnosed a grade 4 glioblastoma - this came as somewhat of a shock as up to then it hadn't been mentioned so wasn't really on our radar. I feel I could type all day about everything so forgive me if a bit waffly.
I am struggling very much emotionally which makes me feel very selfish and have so far been unable to find much information on people his age with this condition, this I would like both for my own research and more importantly to try to put my son in touch with others his age group who can relate to what he is experiencing.
I also want to know if there is hope here, my son is about to commence 6 weeks radiotherapy with chemo starting concurrently and due to run through to September. I know the internet can be a dark place especially when typing the word glioblastoma into a search engine but I can't help but look for information and the statistics are so scary. My son is clear he doesn't want to know his prognosis nor does he want me to discuss with the consultant and after a week to process this I think it is the right decision. I just want to be able to find some balance and rationality with this so I can best support my son who after all is the patient here - it's not about me.
Sorry for the long post.
Thanks.
HI
thanks for the update. Delighted to hear that you had a great trip to Germany. Not a country I've been to...yet. A change of scenery is always good. I know what you mean about our grown up sons not finding it the most scintillating holiday with us. I have to admit my son and I get on well. he's my gig buddy for concerts and recently I joined him for a week in Austin TX to go to the motogp weekend at COTA. It's all about making memories to last a lifetime.
Hope all the appointments go smoothly. I always found the time between the scan and the chat with the oncologist the most stressful time. I'd love to say you get used to it but you don't. It's just one of the joys of this rollercoaster ride that keeps giving. Will be thinking positive thoughts for you all.
I hear you on the over eating. Its understandable and to an extent allowed if it helps you cope. Don't be too hard on yourself here. You're going through more than you realise. Perhaps now that the weather is improving you can get out and about a bit more. It's been such a long dark winter and wet Spring. A little fresh air each day works wonders for the soul.
I had counselling via our local hospice after G passed away. The jury is still out for me as to whether it helped or not. I knew though when I was getting really anxious about going to the sessions that it was time to draw a halt to them. I've not ruled out future counselling if its needed but for now I'll stick to journaling. That has always been my Go To.
Please remember that this community is here for you. Reach out anytime.
sending love and light and hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Thanks Wee Me - it helps so much to be able to connect with others who are going through similar - it means so much to me. Your trip to Texas sounds fab 
Hugely stressful day yesterday. Took M to Oxford to start his first cycle of chemo post radio/chemotherapy only to be told they couldn't give it to him as the insurance company hadn't approved the claim. Couldn't get hold of my nurse contact at the insurance company so left a message and had no choice but to drive home (one hour!). When I got home she had emailed me with the pre approval for the treatment which dated 2 May so (6 days ago!) - it appears the whole things is the clinics cock up.
I was (maybe still am) so frustrated and angry - waste of time, waste of petrol, the fact that I'm really busy at work and essentially had most of the afternoon off for nothing. Not to mention if there is any risk to M of delaying the start of this cycle which I appreciate but I can't get into as I just don't know the risk.
I know were are hugely fortunate to have private cover (it was pure luck that children are covered on my insurance through work until they are 24) but it still makes me worry about the lack of joined up care.
Not to mention this is yet more admin I need to do to follow up with the clinic that they have the approval and try and avoid this happening again. I don't know if others feel similar but I do worry about dropping a ball as there is so much to cover and sort out - all while trying to hold down a full time job - which lets face it is paying for his treatment so I need to try and keep it
Our month off treatment is well and truly over! Feel a bit better after my ramblings...
HI
sorry to hear things didn't go to plan the other day. The admin and bureaucracy involved whether its private or NHS can be a nightmare and is so draining. I hope you get things sorted out quickly.
I'm going to put my team manager head on here from a work perspective - no matter how busy you are, work can wait. Family comes first. I continued to work full time throughout G's journey and on reflection I should have perhaps stepped back for a bit sooner than I had to. I get that continuing to work is a help as that's something that's still "normal" but work will be there when you get back to it.
Please take care of your wee self here as well as your son as this is a gruelling rollercoaster ride and its mentally, physically and emotionally exhausting. Please don't underestimate the toll its taking on you.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
