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! 😡

Hi there I just wanted to give a hand hold as my dad sadly had the same thing in 2020
it's so sudden and so life changing. If you need to chat I am here xxx

I'm so sorry, you've been through so much already and now your DH has this, it's just too much for one family.

I hope you can find some counselling for DS, the poor wee lad needs someone outside the family to talk to
(whether he thinks he does or not!), you too!

I hope DH can get some treatment that gives him some good quality time with you both.

Do you have much support with family/friends?

Dh has this, successful op with complete resection, radiotherapy and still completing chemo therapy - he's early 40's.

Please try to keep in mind that there is a massive massive variety even within stage 4 glioblastoma, and there are huge differences between personal experiences due to the site of the tumour, his age is hugely on his side too - so those very scary percentages start to get a bit less reliable the more they find out.

The Ruth Strauss foundation were massively helpful with the kids, how to break the news of diagnosis and treatment, as well as the after effects of surgery.

It is a hell of alot of information to take in over a very short timescale, if you have any questions please feel free to message me and I'll do my best to sign post.

It's also very important to take every bit of support you can, personality changes are part of it, as well as loss of balance and safety awareness. Thankfully the support team at the hospital stepped in to ensure his safety.

I’m so sorry. My DH had the same diagnosis totally out of the blue when he was 34. He had another three years despite being predicted 14 months and was really very well for the vast majority of it. I have no idea if that’s any comfort to you at all. I know it’s nowhere near long enough. I wanted him to have another 50 years of course.

Sending you and your family so much love xxx

In relation to my above message, my father was older so this may not be your experience.

My dad had this too, diagnosed at 68 died 11 months later when I was 8 weeks pregnant with his first grandchild.

It's a shit disease, that 11 months was so tough for everyone, but mostly for my Dad.

You must all be heartbroken.

DH had this. Diagnosed at age 19 with poor prognosis but managed good quality of life until 27 when he deteriorated rapidly and we lost him.

OP I’m so sorry how awful. Life can be hideously cruel.

Thank you all, you have been really kind by sharing your experiences with this shitshow of a cancer. It came just as I was finally starting to put my extreme fear/anxiety of another reoccurrence. I had been going to Maggie’s for counselling for about 8 months and had just completed a 6-week course there which was really helpful and managed to considerably reduce my anxiety. And now this!!!

DH has opted for a live craniotomy. The neurosurgeon who was due to operate tomorrow has just tested positive for Covid, so DH will be operated on by one of the neurosurgeon’s colleague in the afternoon.

I feel both DS and me will have to have some sort of counselling. I will probably also need anti depressants. Something to make me feel just a bit less of this godforsaken pain inside. At the food festival today I bought a really lovely pineapple daiquiri which didn’t do anything, didn’t make me drunk & didn’t take any pain away. And then I thought of DS, sitting there next to me. And the desire to buy another one had vanished completely. Numbing myself isn’t the answer. I have to live through this and come through on the other side, it’s the only way.

The sledgehammer effect of the whole situation is indescribable.

@TheVanguardSix yep, pancreatic cancer is another bastard shit cancer. Insidious. Fecking. Bastard. My brother in law’s mum died of it when he & his twin sister were 5. Then his dad and stepmum died in a car crash when they were 18. And despite all this shit that had happened to him he managed to turn his life around, graduated and has got his own architectural practice. It gives me hope for my DS. Not the bit about the architectural practice but just in terms of not becoming a person forever angry at the whole world and driving people away.

My goodness OP, I'm not surprised you were wanting to numb yourself. That amount of pain sounds almost unbearable and your boy must feel terrified especially after you have had cancer twice too. He doesn't even have lack of knowledge of what's ahead to cushion him.

I hope the operation goes as well as can be hoped tomorrow and your husband's recovery is as smooth as possible.

I am so sorry OP. Thinking of you, your husband and son

Jesus wept.
That's appalling. Fecking bastard disease.
Sending love to you all.

I’m so sorry, it’s a bastard of a disease. That said, I’ve known a number of people stick two fingers up to their poor prognoses and do far better than expected

If you’d like some support, Brain Tumour Support are amazing, they have a dedicated support line and a counselling service

sending love to you ❤️

Thank you so much, everyone.

It has been a week since his op, they managed to take ALL of it out, plus supermargin, but it is hard to feel joyful because it inevitably starts growing again. Waiting for histology results which may not be until Wednesday next week.

DH has been feeling really low mentally, plus has had on/off sore head, metal clips due to come out later on this week.

I cannot cope on my own but have no choice. DS has been sweetness & light one moment, a complete angry mess the next. In laws are completely useless, they said they would help us, then Father law contracted Covid 10 days ago, so fine now but none of them are talking about visiting/ helping, they just want updates via text. And MIL has been telling me DH needs peace & quiet to recover - something that has been quite hard to achieve due to DS/general life noises. I wanted to throttle her as I have been trying to look after DS, keep on top of his needs (taking him out to trips & such to minimise him being noisy at home - have spent loads of money that I usually don’t spend, so am skint as well) & homework, look after DH, keep on top of his needs, work, do all the other shit everyday life things such as trying to run a household/having food in the house/clean/cook, attending a residents’ meeting re: stairwell painting…. All the shit that is so much easier done in tandem. And she is giving me a lecture!!! She also suggested I took unpaid leave from work which I am trying to avoid and used it only when/if it becomes absolutely necessary (further down the line) - also, who is going to pay the bills/food??!? Bloody hell, she has always been like this, princess and the pea (never worked after she got married, stereotypical doctor’s wife), she has no idea!!! I thought she would say, now that FIL is Covid free, we are coming around, but fecking nothing! I know I should just buck up and get on with life but it hurts. Her son had a brain surgery 1 week ago and they haven’t seen him yet and no plans to do so, at least not this week. Honestly….

Sorry for the self pitying post. Everyone says I need to look after myself as well but it’s simply not possible if I have absolutely no family help at all. Various mums & dads from DS’s class have been more helpful in picking up DS after school/taking him places, etc. than my pathetic in laws have ever been. They have always been like this, hands off. Granted, they live 3 hours away but can stay with my SIL who is only 45 minutes away. Plus they said they would rent a flat nearby to be near us. Nothing.

Ans I live in fear every day that my cancer may return due to all this stress.

It's not self pitying at all, looking after someone is incredibly, incredibly hard, do you qualify for a carer's assessment to see if you are entitled to any help? Do you have a local carer's association, they were helpful when I was caring for DH (even if it is just someone to talk to who knows what it's like)?

With the in laws, mine were like this , until I just told them what I needed.

"Can you come next week and see Dh, afterwards can you take Ds out for dinner/down the park/whatever for a couple of hours, I need some time to sort stuff out"

If they say no, then you know where they stand. But they may be waiting to make sure they don't make things more effort for you

Havent got any answers, just wanted to send you . You, your husband and your son are very much in my thoughts. Xxx

I am so sorry OP, awful, awful disease.

I was diagnosed with stage four GBM about six months ago, have since had an op to remove the biggest tumour and chemo and radiotherapy. Note just starting a new round of stronger chemo. Interestingly the radiotherapy made my back bad, I think it was the daily lieing down completely still on a very hard bed, after I asked they did start putting a little padded may under my back. Sending love and healing powers to your husband. MacMillan have been a fantastic support, do contact them if you haven't already. The family liaison lady visits my son at school most weeks and has been a great support to him as well as a safe place to say what he thinks and feels. Also if you haven't yet. Apply for PIP. It took ages fit them to make the decision with us. Although that seems to be fairly common. If they do award you it you get a back payment from when you applied. That was a nice little surprise hitting our bank account one day. One we had our award letter the ms CV MacMillan benefits department then applied ford blue badge for us. We had to do nothing, beyond give them some details, so the process became stress free for us. But we now have the benefit of a blue badge to use. Took me ages to read through the booklet that came with it about how to use it properly. Make sure you take care of yourself while caring for hubbie, I know my other half has found it tough suddenly taking on what would normally be my jobs eg sorting out child care and school drop offs- not the DVLA have kindly taken my driving license. But without the breaks he'd normally get, going out in the evenings, relaxing evenings at home are now spent getting a bit stressed by bedtimes. Accept help if you're offered any, it'll help you and your family to cope, the number of cakes homemade meals we've been brought in the last few months by friends etc had been phenomenalmb it's been hard also trying to keep things relatively normal for DS7, he's one of life's worriers so needs some sense of normality and routine maintained. Fortunately his school are very good at emotional support. She happy for us to email the teacher in the morning if he's out of sorts so she knows whether to brace herself for a grumpy child or not. They are also fantastic at helping us to deal with some of his bigger questions.

I am sorry you're going through this, it sounds like you're being pulled in every direction as well. I expect you might have heard of it already but The Brain Charity - www.thebraincharity.org.uk - can be lots of help in practical ways.
Im a Brit living overseas with a brain tumor and beyond the clinical there's not much for me here, but I contacted the Brain charity in the Uk and they have been wonderful and just so supportive and kind.

I am so sorry to read this.

With regards to your in-laws are they to type to respond better if you tell them what you need? Could you be frank with the, when they say you should take time off, tell the, you can't afford to but if they want to help with money that would be a big help for their son and grandson.

I second applying for pip, as well as seeing if you are eligible for a blue badge (this may be a little down the line once you have PIP award), it's fairly straight forward and once in place does help cushion the financial blow slightly.

“attending a residents’ meeting re: stairwell painting….”

wish I could go for you....(in fact this is a job for in-laws)