Schwannoma

Of course you are scared. My own experience with a glioblastoma was an awake craniotomy. Not exactly fun but i have had worse times at the dentist. Then once my head healed, radiotherapy and chemo combined. 6 weeks of that, again no problems, was fitted with a mesh mask and then the tumour site zapped, only took a few minutes per session. No side effects for me. I then had another six months of chemo which finished in May 25. 
Im now just being scanned regularly. 
what helped me through it all was an overwhelming feeling of gratitude. All this treatment and expertise and all for free! Takes 13 years to create a neurosurgeon apparantly! 
Take care and keep us posted

Thank you for taking the time to explain the process of your treatment. 

I'm going to the QE in Birmingham on the 1st of October to find out my treatment plan. I’ll let you know & thanks again. 

Hi, i have stage 4 glioblastoma. I had the tumour removed in June,  fairly uneventful. In hospital for 4 days then home to recover. Just few weeks later, started the 6 weeks radiotherapy and chemo treatment so not much recovery time but they thought i could tolerate it.  Which I did.  Not a painful treatment , uncomfortable at times, that's all.  Chemo didn't effect me but i have lost quite a lot of hair from the radiotherapy. 

Suffered at the end of the treatment though. The fatigue and exhaustion was at times unbearable.  I'm just, into my 5 week of rest from treatment and with the help of more steroids beginning to feel stronger. 

I start chemo again this week,  4/6 months 5 day a month. I'm hoping,  as they tell me,  this is when I get some quality of life back for a short while anyway as this is few extra months is why i went through the treatment.  

Not sure what else I can tell you but please ask if you have any questions. Different diagnoses I know but it's good to find support in someone that's had treatment etc. 

Wish you all the best.  

HI James

a warm welcome to the group. Sorry to read about all that's been going on. 

Schwannoma are not  something I have personal experience of. My experience lies in supporting my late husband through the three years of his Glioblastoma journey. I took the liberty of looking up some generic information that  might help- Vestibular schwannoma (acoustic neuroma) | Macmillan Cancer Support

G had an awake craniotomy to debulk his tumour and coped really well with the surgery, He then had 6 weeks of oral chemo/radiotherapy in combination with minimal side effects. He was fitted for a mesh radiotherapy mask about a month post-surgery and his biggest complaint throughout the treatment was that it was too tight and squashed his nose. It needs to be a snug fit to ensure that they target the correct area. The only side effect he suffered was fatigue which kicked in about week 4 and lasted for about a month afterwards

This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

For now though I'm sending you a huge virtual hug and lots of positive energy.

love and hugs

Wee Me xx