Hello to everyone, I am new here. My little brother who is 53 was diagnosed with stage four glioblastoma, I feel I should’ve joined a long time ago. I am doing everything I can to support him and his lovely family inc my 2 teenage nieces and his wonderful wife. He is three weeks in to his radiotherapy, chemo had to be stopped as he had a temperature spike at the weekend had a viral infection that that they are monitoring.
His eyesight is not good, but luckily one eye is better than the other. But it’s his speech that is disappearing, and I was hoping for any advice as to apps or equipment that could be used to communicate? If anyone can suggest anything, I’d be so grateful as I think this is the most devastating element of this tumour. Not being able to vocalise how he feels and for practical things just to be able to have a chat.
Not being able to vocalise how he feels and for practical things just to be able to have a chat.
He and his wife are so close. She knows how he’s feeling, but she is exhausted as it’s now four months since his diagnosis, I don’t think she’s really reached out to you guys yet. I will call the Support number today, and also would appreciate advice for counselling for my brother, my sister-in-law didn’t think it would be possible because he couldn’t speak, but I gather it is still available for people with asphasia.
I said all of you my love, I truly think this is the most evil of tumours, and although each experience is different, I do know what you’re going through.
love Kt Graceland x
Hi Kt,
Welcome to the group. I care for my my wife who has a GBM and we're 15 months in. Thankfully she was able to have surgery and treatment so I guess she was "lucky" but we know that it will return sooner or later.
It sounds like you've had a look round the site to see what Macmillan offer and if you're unsure about anything do just call them on 0808 808 00 00.
As far as counselling it might be worth checking to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre . Or it may be, as is the case for us, that there are other local cancer charities that can support with counselling.
With regards the aphasia it might be worth speaking to his specialist nurse about how to get a referral to a speech therapist. Or if that doesn't look viable on the NHS then looking privately. as I know there are some that specialise in supporting people after a brain injury.
Hope some of this is useful and please do use this group to ask any more questions or just vent how you're feeling.
Sending a virtual hug,
Chris
HI Kt
a warm welcome to the group. So sorry to hear about your brother's diagnosis and all that you are going through as a family. It's too cruel.
My husband (then 50) was diagnosed with a GBM in Sept 2020 and its his speech/language and understanding that has suffered most. His eyesight too has been compromised. As Chris has said below, I'd encourage him to ask his CNS or oncologist about speech therapy. I'm not sure what they can offer but I do recall the speech and language therapist who was present for G's awake craniotomy saying that they could support post-op. Feels like a lifetime ago just now.
Something also to bear in mind that he may be worse during the radiotherapy and that things could improve a bit once the therapy sessions are complete. He's likely still healing from surgery too and it takes time for all the swelling etc to fully go away. Patience is key here. The effects of the radiotherapy continue for a couple of weeks after the treatment is finished so it may be a month post-treatment before you get a clearer picture of how things are.
With regards to the eyesight issue, G has set up the "talk back" feature on his mobile and pc. Basically it reads everything out loud to him. Might be worth exploring. (I'll confess the "voice" bugs the H**l out of me so that also requires patience.)
Chris has already covered pretty much everything else I was going to suggest and I'd encourage them to reach out to MacMillan with regards to the counselling options. Their GP might also be able to refer them to their local hospice. Folk are scared of hospices as they associate them with the end of the journey but they offer so many support services to the whole family and counselling is one of them. My daughter has taken advantage of this locally and has really felt the benefit of it.
I've written a few community blogs for MacMillan over the past few years. Here's a couple that might help give a little insight into our journey
Caring for a partner with a brain tumour – a Community member’s story - Macmillan Online Community
“I’m fine”: how do you really cope as a carer? - Macmillan Online Community
There's also another couple of groups on here that you and your sister in law (when she feels ready) might want to explore
(+) Carers only forum - Macmillan Online Community
(+) Family and friends forum - Macmillan Online Community
I hope some of this is helpful. Nothing prepares you to hear a diagnosis like this and you're right, these tumours are evil. Please take time to take care of yourself here too. Encourage your sister-in-law to do the same. Taking "me time" isn't selfish. It's essential to help keep your wee batteries charged so go for that coffee/drink with friends, go to the gym or whatever it is that you do to relax. I'll not lie this is a gruelling rollercoaster ride and after 3 years I'm not too proud to admit that I am exhausted - mentally, physically and emotionally.
For now though I'm sending a huge virtual hug and lots of positive energy to you all Stay strong,
love n hugs
Wee Me xx
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