DH49 glioblastoma - shock & disbelief

[balkanscot]

My DH49 has been diagnosed with glioblastoma stage 4 last Wednesday. Op is tomorrow but with GBM stage 4 it’s not curative as it almost always reoccurs. It’s such a shitty bastard cancer as it virtually gives you no hope whatsoever. Prognosis is usually 12-18 months. I can’t believe we went from “It’s probably a stroke, let’s go to A&E to get it checked to GBM diagnosis. He is losing the use of his left arm, his left lip is drooping considerably, he has difficulty forming words. He also has seizures - facial ones (left side of his face seizing uncontrollably for a few minutes). He is on Keppra & steroids at the moment.

How could this bastarding brain tumour be so fecking deadly and seem to come out of the blue? No indications that anything was wrong. Then 26 April happened (when we went to A&E he had slight difficulty forming words, drooling and left side of his mouth drooping slightly). Now he is shuffling around in his dressing gown like an old man. 😥

We have DS10 who is already showing signs of grief - anger, disobedience, defiance. He himself had a brain op almost 4 years ago to treat his epilepsy. I have also had cancer twice (breast cancer, then recurrence which was still considered primary as no spread beyond lymph nodes) and have BRCA2 gene.

It feels like I am living my life beyond a filter. Lovely sunshine, happy people smiling & enjoying life all around, and I feel like I am the only one suffocating.

Just wanted to vent. Glioblastoma, what an utter fecker! 😡

Thinking of you balkanscot. My husband died 16 months ago from glioblastoma. He was sick for a year previously. I have PTSD from that terrible time. So just wanted to say I completely understand what you're going through. Virtual hug from here.

The doctors put my DH on antidepressants which reduced the anger and violence towards me.

I started taking Sertraline which really helped with the relentlessness of it. They take 4 weeks to start working so I'd go for them sooner rather than later.

We usually read and hear about the people who cope marvellously with a cancer diagnosis and terminal prognosis. I think your husband’s attitude and behaviour is much more common, but is taboo and isn’t discussed enough. I hear you. My father was similar. It isn’t discussed enough.

@balkanscot I am so sorry ❤️. If I could reach into my phone and put my arms around you I would 😢. Sending you love xx

Has your DH any friends that could come and sit with him whilst you go do something for yourself?

Quite often I feel like I am living someone else’s life, it’s just all surreal.

I am sorry too for everyone else going through this 😢 xx

DH updated our WhatsApp group with his friends yesterday…

“Jack has had a mixed couple of weeks. He has suffered with a lot of fatigue. He has had a few days when he has suffered with sickness and his appetite has been pretty much non-existent. He is also losing the hair around the right side of his head. We have played around with his meds a little bit and seem to have to sickness under control and his appetite is slowly returning. On the plus side he is now over half way through his radiotherapy with just 13 more sessions to go. Hopefully he will feel better once this is done. I should add he is still Jack, not complaining, still smiling and making the best of the hand he has been dealt”

With regards to the last sentence, one of his friends replied… “and that’s why we love him” -

This made me cry, tears just seem to plop out these days whenever they feel like it.

A couple of weeks ago, Jack finally got to go to the cricket. Two of his friends, Jack, my dad and then DH. They had a smashing time.

Oh Balkan this sounds so very very hard for you. I’m so sorry. Is there any way to get some sort of respite care for you and DS to escape the reality of home for a little and maybe have a nice break or day out? I don’t know what else to suggest, but I agree that you are allowed to be angry. You’re being treated meanly, even though it is no doubt unintentional and not what your “old” DH would want.

I know I have mentioned this on a thread, but I forget which one, so sorry if repeating!
For those of you who are dealing with a brain tumour diagnosis (family members included), please check out www.braintumoursupport.co.uk

They offer telephone and online support (including groups), welfare and benefits support and counselling

Thinking of you all, it's so incredibly tough xx

I'm so sorry about your husband's dx. My Mum was dx with GBM4 in May under very similar circumstances - she had what we thought was a stroke in March, then told it was a low grade glioma in April, before she had a seizure in May that led to the GB dx. She had surgery to debulk the tumour at the end of May at John Radcliffe Hospital then had so many complications - she had a drain fitted, developed an antibiotic resistant surgical site infection, and pulmonary emboli. She ended up being in hospital for 5 weeks. The infection meant chemotherapy was ruled out, but she's just finished 3 weeks of radiotherapy. We heard from her consultant yesterday that she won't be offered any further treatment, and that she has only a few months left. It's devastating enough when it's your Mum - I can't imagine how hard it is when it's your OH. I'm so sorry xx

How are things @balkanscot?

Sorry I haven’t been on here a while. DH has been in hospice since early November, still going, not strong, bit plateauing. I have a feeling he is a bit worse than when he came in as seizures have been more frequent and he is less talkative. DS and I are practically camping out in the family room. I am still working, DS is still at school, it’s immensely hard to drive DS to school from the hospice (our place is about 2 mins. away on foot whereas the hospice is about 15 mins. in a car). Because they serve breakfast quite late at the hospice I need to drive DS to our place first to have breakfast, then dispatch him off to school, then get myself ready for work. Then take DS to after school activities, etc. I am a living zombie, can’t wait to start my Christmas/New Year annual leave. I will have think in January what to do next - social worker told me I can get signed off by my GP for 12 weeks which is probably what I will have to do. There is no way I can keep this pace up.

Off to read your posts since I was last here. 😘

Thanks for updating.

Do you and DS need to live at the hospice? Would it not be an idea for you and he to return home and just visit your DH? My DF died of cancer when I was a child and when he was in palliative care we visited until he came home to die. I can't imagine how hard it must be living there

DH died on 21st January. DS and I were away for the weekend and I am actually OK with us not being there when he took his last breath. I hate being a widow and I hate the fact our DS will grow up without a dad. I hate all the death admin connected to it, I hate the fact I have to wait months before a letter of confirmation comes through so that I can administer DH’s assets and pay of the rest of the mortgage. I just want to move away to a remote Scottish island and stay there forever. I know it’s not going to happen because I have a DS but it doesn’t stop me from fantasising. I find being in the flat where we were a family once upon a time just too hard (at the moment anyway)

@Ginger1982 DS wanted to be as close to DH as possible, so I just went along with it. I knew it wasn’t going to be forever.

A great big thank you to all of you who put your thoughts & support into this thread. 😘

I am so sorry. All those feelings are so familiar to me, even a year on I can't quite believe I am a widow and I hate it with a passion. Whatever feelings we feel are ok though, there is no right or wrong way when it comes to grief.

Balkanscot I am so sorry for your loss 💐

So sorry to hear your update

So very sorry balkanscot.

I've just read your thread for the first time tonight and I just want to say I'm so sorry for you and your son. I can't imagine what you've been through and having to go through. Are you both having counselling? I'm a cancer survivor and now have children and it terrifies me that it could ever return. Your son is lucky to have you as his mother, always thinking of his needs and putting him first, you sound selfless and wonderful. I hope you are looking after yourself too xx

Life can be so incredibly cruel
I hold you and your son in my heart and wish love strength and care for for you both

I’m so sorry - what a shock for you all. As you have the BRCA2 gene would you consider surgery to minimise your chances of reoccurrence and to relive stresses later on?

*relieve

I'm so sorry. You and your DS will be ok though, never forget that. You will get through this

@balkanscot I am so sorry to hear about the loss of your DH. I hope you and your DS make it to that remote Scottish island. Sending love.