First Consultant Visit after MRI scan, diagnosed GMB Stage 4

HI Gary.

welcome to the online community. You sound just like my husband! He too was diagnosed with GBM4. His diagnosis was in early Sept 2020.  He was 51 at the time and a total fitness freak (marathon runner) Shocked is definitely an understatement! I can empathise with the journey you've been flung into. In those early days he would say he'd just need to put his "big boy pants" on and get on with it. Think we've all worn those over the months!

I'm sorry to read that you feel alone and left out to dry. Waiting and worrying is so much harder to deal with that knowing the facts, however cruel they may be.

My husband also went for the "full works package" as  you put it. Love you description of what lies ahead. Hold onto that sense of humour. He had an awake craniotomy and it went well. He was back home in a few days. About a month after surgery he started his 6 weeks of "chernobyl reactor then poison" as you put it - only its Chernobyl reactor and poison at the same time usually. He would have radiotherapy five days a week and the oral chemo tablets seven days a week. He coped really well with the treatment. The first few days of the chemo tablets he felt yucky but wasn't sick. (the hospital gave him strong anti-sickness pills and strict orders to take them for the first 3-5 days)- for once he actually did as he was told!) His biggest complaint about the radiotherapy was that the mask was very tight and they kept squashing his nose! We made it through the six weeks. Fatigue set in about week 4 and lasted for about a month afterwards but he was still up and dressed and going for walks every day. Hopefully you'll sail through the operation and treatment with no dramas.

I hope some of that has perhaps allayed a few fears.

Now 14 months down the line he's still in good shape. Physically he's great. He's back to his running and putting in up to 60 miles a week. No idea how he's doing it! His tumour was in the area of the brain that controls speech, language and understanding . It's left him with a few difficulties- poor short term memory, trouble following instructions. His ability to read was compromised as a result of the tumour and he really struggles with more than a few words at a time. His speech gets confused too but he can still argue with us all!

I guess the key thing to remember here is that everyone is unique. No two tumours are identical and no two people react the same. Stay positive. Hold on to that sense of humour. It'll stand you in good stead.

This group has been a great source of support. Friends and family are great but unless they've walked this path, they don't "get it". Everyone here does so there's always someone around to listen or to offer support or a virtual hug.

Macmillan Support Services also offer lots of information, support, financial guidance or just someone to listen. It’s free to call 0808 808 0000. Most services are available 8am to 8pm, 7 days a week. Have a look by Clicking here to see what is available,

Please stay strong. I'll be thinking positive thoughts for you on 14th and hope that all goes smoothly. Remember to pack those "big boy pants" in the hospital bag.

sending you a huge virtual hug.

Wee Me xx

Hi Wee Me,

Thank you for taking the time to read and reply to my post, first contact is always the hardest part. what to say? how to express yourself correctly? ect ect. now my sense of humour is part of me hard wired so it can never be taken from me, its what keeps me going. Yes some of my fears have been put to rest thank you, especially when told to "put your affairs in order before the 16th". I really dont think it has fully sunk in yet, as i was being strong for my partner who found it hard when told what lay a head for us. All i said dont sugar coat it, gees i didn't mean to break her then hand her back over, took me most of the evening of fine dining and a bottle of fizz to sort her out. but joking a side, it was something i don't want to witness again. Then travelling home i started to read your reply, it left a very warm feeling inside that i will keep with me through out. i'm off to M&S tomorrow for a pack of Big Boy Pants. Hospital bag was purchased today whilst at Coventry. Again i would like to thank you for replying. 

Hug received, one back and fist bump for hubby.

Gary x

HI Gary

glad my words were of some use. 

Telling folk we care about things like this is beyond tough. My husband told me they'd found a "something" at 7.53am on 26 August 2020 - that time is now ingrained into my memory. By the end of the day it had been confirmed as a tumour and by 4th Sept we were being told it was time to put his affairs in order. Telling our kids was hardest. They're 23 and 21 so no longer children but it was heart breaking seeing them crumble. 

I'm sure when you broke your news to your partner you didn't break her.... well maybe a wee bit... Nice to hear you then wined and dined her.  She might not feel it just now but she'll be able to support you through this. She's stronger than she thinks she is.

If your partner wishes to reach out via this community there is a group for carers -  Carers only forum - Macmillan Online Community.  There's a lot of support available on there. 

I don't want to dwell on the negatives but the "putting your affairs in order" is quite important so if you haven't given thought to power of attorney, wills and pensions etc ( all the grown up stuff) I'd encourage you to do so. The pensions in particular is tricky to navigate. I may be a bank manager during the day but pensions confuse the hell out of me! 

Hope you manage to relax and enjoy your weekend as best you can. 

hang in there

love n hugs

Wee Me xx