Hi
Just wanted to say hello and reach out to people who have or are experiencing similar issues to my own.
I am 51 years old and have a confirmed diagnosis of stage 4 Glioblastoma. It has all happened so quick even now it’s hard to get our head around. Symptoms started end of November 2025. Main impact was to speech, physicality have been ok.
NHS have been amazing and I had a craniotomy to remove as much of the tumour as possible at start of Jan. The consultant was happy with the results thankfully, but now we wait on the radiation/chemo plan. Hope to hear that soon.
Have no idea what to expect from radio therapy/ chemo. Am worried about side effects and my family having to see me go through this. The craniotomy was difficult as it was.
As I can no longer drive am also concerned about transport to the radio therapy sessions. Is there any support available on that front?
Still feels so surreal and not happening to me, though am fully aware it is!
Family/friends have been amazing and it’s been great to feel loved. With that inevitably comes the lows and feel almost guilt that am putting them through it.
Am determined to face this with as much strength and determination as I can.
HI Finn
a warm welcome to the group. So sorry to hear about all that you are going through. Life's too cruel for words.
I supported my late husband through the 3 years of his GBM journey so I can empathise with what you are going through. G was 50 when he was first diagnosed. Like yourself he had a craniotomy and then a month or so after was offered six weeks of oral chemo and radiotherapy in combination. This seems to be the standard treatment protocol unless individual circumstances mean that a different approach is more appropriate. Everyone's situation is unique.
G coped really well with the 6 weeks of treatment and didn't suffer any real side effects other than fatigue which kicked in around week 4 and lasted for a month afterwards. His biggest complaint on a daily basis was that the radiotherapy mask was too tight and the nurse s squashed his nose. His overall symptoms did worsen slightly during the treatment period and for a short time after but once the treatment cycles were over, he picked up. His main symptoms were cognitive and he had problems with speech, language and general understanding.
Physically he was in great shape. He was a marathon runner and physically very fit. In fact he ran PBs in all of his competitive distances up to and including marathon two years after his initial diagnosis. He ran daily up until a couple of months before he passed away. When he could no longer run, he walked or cycled on his static bike in the garage right up until the last week or so.
Transport to the hospital for treatment can be a challenge depending on how far you need to travel. We had a 60 mile round trip each day and on most days I drove G to his sessions. If it was a day where he didn't need to meet his CNS during the first couple of weeks, he would take the train and walk the rest of the way to the hospital. Ig he had to see the CNS then I had to take him as he would get lost in the hospital trying to find the clinic.
If transport is going to be an issue for you perhaps reach out to your local hospice or speak to your CNS. Our local hospice offers a patient transfer service where volunteer drivers will take folk to their appointments and wait for them. Perhaps there's something similar in your area. Your GP might also be able to offer some suggestions.
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 n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
