Glioblastoma

Hi Roline and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your daughter's diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Thank you. I will take your advice.

HI Roline

a warm welcome to the online community. Apologies for not getting you your post quicker. Life gets in the way some days. I'm so sorry to hear about all that is going on with your daughter. Life's too cruel for words at times.

I supported my late husband through the three years of his Glioblastoma journey so can empathise with the journey you are on and the emotions you are going through. G was 50 when he was diagnosed out of the blue in Sept 2020. 

Everyone's lived experience varies with these tumours as a lot depends on what area of the brain is impacted. In G's case, it was the area that controls speech, language and understanding. Physically he remained very fit until the last few weeks of his journey (He was a marathon runner) Mentally though his symptoms were more akin to dementia.

He coped well with the 6 weeks of oral chemo/radiotherapy and the main side effect he suffered from was fatigue. It hit around week 4 and lasted for a month after the last session. He was offered a further 6 months of oral chemo at a higher dose (5 days chemo 23 days off) but he declined all further treatment so I can't fairly comment on other treatments.

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. And I'm sure others will be along shortly to share their lived experience.

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 am sending you a huge virtual hug and lots of positive energy.

love n hugs

Wee Me  xx

Thank you so much for your kind and informative reply. I am so sorry that you lost your husband to this awful disease. I am encouraged to hear that he lived for 3 years as Kate has been told 12-18 months. I know that is an average and we are hoping to get her as much quality life as possible. She has already survived ovarian cancer and has struggled for many years with complex pain conditions. Ironically now she is being treated for GBM she is almost pain free and enjoying some fun things. She starts her chemo/radiation on Thursday and once that is finished we will explore what other avenues are open to her. She is 48 so not much younger than your husband was. I was a therapy radiographer so I understand the effects of the treatment and have prepared her for that. 
Her tumour was in the parietal region and they were able to remove all visible tumour. She has been left a bit vague and her maths skills are affected, She has a maths and physics based PhD so that was noticeable. Her short term memory has gone but we are hoping that might improve. She is very philosophical about her diagnosis but is determined to try anything to stay with us all as long as possible.

Thank you again for your message.