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! 😡

Thank you all, especially @Doofas. 💐Yes, DH’s first PIP payment has just come through.

My in laws have now moved into the rented flat to be nearer us. Still feels like I am the only one doing absolutely everything and is making me so exhausted!

DH ended up having another operation 5 days ago as he has a fluid build up - not an infection but a clear-ish yellow-ish fluid that was apparently produced by the tumour. MRI has already shown some tumour regrowth since the initial operation to remove it (and it was completely removed). Anyway, apparentlyall the neurosurgeons are baffled by what appears a cystic tumour that formed inside the wound cavity. I mean, seriously… 🤬 He has been really shaken by it all and seems much more confused & mentally fragile than after the initial operation. He gets confused about which meds he needs to take/has already taken and when. He needs peace & quiet - we have massive building works carried out at the moment by a business right outside our bedroom window. DS hasn’t exactly been quiet either And that’s not even the tip of the iceberg considering what still lays ahead of us. God, I want my old life back!

Friends have been helpful but it is STILL exhausting, The feeling of isolation and loneliness is palpable. I feel everyone else in the world is happy and content and that we are the only ones in the world drowning in this shit. Any DH’’s treatment is not making me… well, there is no light at the end of this tunnel no matter what, so all the operations & treatment are leaving me totally flat.

And on top of everything else I am now tasked to organise DS’s belated birthday party in 10 days’ time, something DS would like to have and DH is adamant that DS should have. But I just feel totally overwhelmed and it’s just another plate that I need to spin. And I have no energy for it at the moment. But have to suck it up and get on with it.

Sorry you have this in your life.

I know three people who've had a gbm, one has now died after 4 years, the other two still going good after 12 and 8 years respectively, which is a lot better than average, having worked in neurosurgery, but, makes the point that averages are not a prognosis.

Thoughts are with you, whatever happens.

Oh God, I am so sorry. Sometimes all you can do is scream into the void. What a shit situation. I really hope you can have lots of quality time with your DH moving forward and that life gives you a few lemons. Thinking of you

@Doofas I am so sorry you were diagnosed with GBM. We are talking with DS’s school (including Ed. psych.) about how to tell a wider circle of parents that DH is ill. We are leaving out what will be the most difficult conversation with DS and others until DH exhausts all options. Of which there aren’t many, sadly. I am seriously tempted to enter a race next year, to fundraise for the Brain Tumour Charity. Sending you & your family lots of love.

@FixTheBone thank you,. That’s what our close friends are saying as well, that averages are not a prognosis.

@pushingpoppies thank you. One moment I am calm and things will work out. The next I get petrified at the thought of becoming a widow and living on one income. Trivial, I know, as millions of people live on one income. Total fear of the unknown.

I'm so sorry to hear it OP. It's awful to have to accept and understand this terrible reality. What a shocking blow.

It's hard to write what I'm going to say now - please understand it comes from a kind place. It's not easy to write and I have no direct knowledge of your DHs condition so it also might not resonate. My apologies if I hurt you.

2 weeks ago a very very dear friend of mine died from breast cancer. She had a devastating diagnosis straightaway in December 2019 that it was terminal (she had no symptoms) and she was given 12-18 months max to live. Every meeting she had with the doctors was the worst news. She was deeply despairing but took the doctors advice and took anti-depressants to help her cope with that awful prognosis.

She took every treatment and for the first year lived in quite a bit of isolation with her DH and sons with lockdowns and Covid - she needed to shield herself. In her second year she lived life to the full and did all the things she loved with the people she loved most of all. She outlived the diagnosis and defied the expectations of her doctors.

5 days before she died she went with her oxygen tank to get her nails done - her last few days to be spent in the hospice heavily sedated.

I'm finding it hard to accept we lost her but her DH (and his sons) are as good as you could ever hope. Her DH ensured that she had a pain free death and the death she wanted. He is so glad that she made the best of her last two years of life. She did what she wanted in her style. And at the end she said her goodbyes and left her loved ones with amazing memories.

I know you don't want to hear any of that. Forgive me. I am so sorry.

So sorry OP. My big brother was diagnosed with this agreed 50 . He was given 2 debulkings over 2 years and then they could offer no more. What I will say it's that post op, when he knew he had less than 2 years left, he decided to live life to the fullest. He managed to cycle and ski and had some amazing holidays. It was terrifying for my lovely sister in law who was terrified he would get poorly abroad but he was adamant and although she had an exhausting 2 years she says she had more quality time with him over those 2 years than she had had in the previous decade and they were precious times where every extra week was a blessing. I hope the surgery gives him a good quality of life back for a decent length of time.
Life can feel very unfair but we have to make the most of every day. So sorry for you all though. x

A girl I know has GBM, she has had surgery & chemotherapy. One of her friends started a Go Fund Me so that her & her boyfriend could do a bucket list, it raised over £20k in 5 days. They have travelled, got married & are on their honeymoon now. Would it be worth starting a bucket list of things to do so that you all have good things to balance out the bad stuff? Even if it is only things like having a posh afternoon tea delivered, movie nights, places to visit if he is well enough, include things for your ds as he is finding it frightening & it is making him angry & upset.

Life is shit
DH on 3rd different cancer in 3 years
Doctors say a walking medical anomaly- doesnt feel like that
Feels like and NHS screw up and pretty shit

1 consultant in the Uk who doesnt seem to give a shit and he cant get an appointment

So very sorry OP
Sending you love strength and patience

Sending you love and
Just a small idea but can you pass the task of the legwork of organising ds' birthday party onto one of your friends? I know if this were one of my friends I'd be only too willing to actually do something useful/helpful for you. Apologies if that's not a helpful suggestion and wishing you strength and peace

@balkanscot so sorry for you. My husband had a grade 2 which then transformed after a few years and he died aged 50.

Just a really practical point through the pain. Have you sorted power of attorney for you over him if he can't do his finances and ultimately welfare. I had this for my husband as he could not do banking as he had memory problems later on though did always have capacity. Just a thought. Hugs

balkanscot, I am so very sorry to hear of your DH’s diagnosis & probable prognosis. It’s just too cruel.

Please draw on the support on here just as much as you can. Around 12 years ago I posted about my DH’s shock diagnosis (different cancer, same shit). The support I received on here was phenomenal during the long year of his decline and then after he died. MNers may have a shitty rep, but actually, there is some true goodness on here.

Sending lots & lots of love to you all.

How are you @balkanscot?

@VillaMia yes, POA has been sorted, thankfully. So sorry for your loss. Cancer is such a bastard, so much research, still no effective cure as such.

@Ginger1982 DS tested positive for Covid on Thursday, so DH has temporarily moved into the flat my in laws are renting. He is petrified of catching it- due to start radiotherapy/chemotherapy tomorrow. He is losing motor function in his left hand AGAIN, hopefully it is not a build up of fluid on the brain.

It is just unbelievably difficult. Not looking forward to school summer holidays at all (from 1st July - Scotland). To be honest, I feel like a widow already. Awful, awful feeling.

Thank you all for listening to me. I went to Maggie’s on Thursday, it helped to talk to someone (psychologist I used to see when I went through my treatment).

I'm so sorry 😞

@balkanscot how is your DH doing? Are you managing to look after yourself and take time out?

23rd June 2022 changed our lives forever 😥

DS1 (25) waiting for his friends to turn up as they were all going to the test match at Headingley, suffered a seizure, never had one before. An ambulance was called. Hospital kept him in overnight and the following morning took him to theatre, they had done some scans and thought he had an infection on his brain.

Nope, it turned out to be a GMB4. He had a craniotomy the week after and has 13 more sessions of radio and chemo to go.

In his month off before starting chemo, DS and DH are going to Singapore to watch the F1 which they both love. Also his beloved Green Day are playing on race night - should have seen them on the 25th June but we had to give the tickets away.

DH and I are taking both boys, girlfriends and our new grandchild (DS2) due in Nov on holiday at the end of Jan. Booked a beautiful villa which gives us the flexibility of all being together and do our own thing too if we want to.

Our fabulous specialist oncology social worker has secured football tickets, something that DS has never managed to do.

I look at DS and think how can this happen to someone who is warm, kind hearted, sensitive and just an absolute pleasure to be around 😢. He is so lucky to have a fabulous group of friends who come to see him despite not living close by. They take him out for food or a pint and more importantly still treat Jack as Jack and not their friend with a brain tumour.

Thinking of you all going having to go through this god awful trauma ❤️ xx

Bella vita.
very very sorry you have to go through this.

The same thing happened with my dad in 2020. Extremely out of the blue. It was unreal.
Thinking of you and your husband.
Here to talk if you need a fellow human to chat to. xxx

@concernedrepurplehouse and @Neverplayleapfrogwithaunicorn

thank you for your kind words ❤️

@BellaVita
Im so sorry. You and Jack shouldn't have to go through this.

My teenage son’s headaches and blurred/double vision turned out to be just (just!) a subdural haematoma but the weeks around that have stayed with me and changed me. Like a visit to the country you don’t want to go to.

I’m so absolutely sorry. I have no words. 🌸

Thinking of you all.