How I miss our old life- we'd have just returned from skiing and would have been looking forward to his 70th birthday in sunny Turkey. Sadly both had to be cancelled.
I thought he wasn't right late in 2021 and other people started to notice he wasn't himself. Suspected a stroke & called the doctor who sent him for a scan. Found out by telephone from A&E the same day and from then on it's been a constant round of hospital appointments- surgery (while he had asymptomatic Covid 19) followed by 6 weeks radiotherapy & chemotherapy.
He's been incredibly brave but is no longer the man he was and does not want to talk about his cancer. He talks as if he'll recover & I'm guessing this is the only way he can get through this, I can't possibly take away that hope.
Most days I cope reasonably well but today I've crumpled, not that I ever let him see as he has the worst situation & doesn't need me adding to it.
The doctors have only said 'It will shorten your life' and 'In our experience, most GBM4 cancers return'. Why do I even need to know how long we've got? Yet it feels so important to know.
So many of the posts on here I can identify with- not many people I know have any idea what we're going through. I had never seen him show fear and now understand that is where a lot of his behaviour is probably coming from.
Virtual hugs to all in need of support on here.
My heart breaks for you. Your story unfortunately is all too familiar
You are stronger than you believe but it is okay to have days when it is all too much. Please be kind to yourself . This is your journey too
I still say nearly everyday that I want our life back but that can never be. It is incredibly hard to accept
Big hugs heading your direction
He is a lucky man to have such a brave and loving partner in his life
Thank you so much Life Detour.
Thought I was back on track today - although both your lovely post and then a phone call from Easyjet agreeing to a full refund for the Turkey trip both triggered tears! Never been on such a roller coaster before.
I've started listing things to do/not do on the rough days - it won't stop them but might make them more bearable.
All good wishes to you
a warm welcome to the group. SO sorry to hear about all you and your husband are goign through. I can relate to it all only too well.
My husband (then 50) was diagnosed with a GBM4 in early Sept 2020. He too had surgery and the 6 weeks of treatment but mentally is no longer the person he was. He's coped brilliantly with everything but like your husband won't talk about it. Now we're at a stage where our kids (22 and 24) and I can see he's in denial about it all to an extent but he's content so why burst his bubble?
In hindsight perhaps not being given a timeframe may be easier to cope with. The timeline we were given ran out at the end of Nov 2021 and we've not had a fresh expectation set. Life is lived in complete limbo and I'll not lie I'm finding it tough. I don't like to let anyone see me upset so I tend to let the emotions flow when I'm out for a walk.
As you've no doubt discovered, some days are easier than others and we make it through them all. This group has been really supportive over the past 18/19 months as has Carers only forum - Macmillan Online Community. There's always someone around who gets it so please reach out. It’s always good to talk so remember you can 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.
Please also remember to take time for yourself. Taking "me time" isn't selfish. It's essential to help you keep going, even if its only a coffee with a friend or a wee walk round the block. You're going through a journey here too.
For now I'm sending you a huge virtual hug. Stay strong. You're coping so much better than you give yourself credit for.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Hi I had my tumour removed in January. Then after brought in to tell us that what they suspected was true I had a Glioblastoma grade 4. Then told the averages of 2 years. Now from my personal experience it didnt for a while to actually feel it was real. And your husband may well feel the same way.
I decided to compartmentalise things in order to keep myself busy. First was financial so I knew my wife and 3 year old didn't need to worry. But it also gave me some control. I also make meals,clean, bath little one and try keep a normal a way of life.while I am still able. Because 1 day I may not.
I am on my last week of the radio therapy/ chemo tablets (6 weeks)
I'll be on the 4 week break then onto 6 month chemo tablets double current dose. 1 week on 3 weeks off.
I have a positive attitude and look forward to things I can do with my family to make memories.
I can only talk as the one with the tumour. I wanted to know as it gives me time to plan things mostly memories for my little one to remember me more it keeps me going. I do talk to my wife about how i feel as hiding spasms ect not only makes her feel im hiding things but also hurts me as my meds can be adjusted so i can enjoy the time i have.
our hospital has a group in maggies for brain tumour sufferers maybe it would be worth him seeing others like him. To open up more to you.
Thank you, Wee Me, we had a hospital visit today & it went well although his markers are up & they can't find any reason. The nurse thought he was in good shape so that cheered us up!
I can relate to your 'not wanting to burst his bubble' - in some cases the brain tumour affects a person's character and and I'm determined to adapt to the new reality somehow in order to keep him safe & reasonably content. He shows more anxiety than he ever used to about traffic, changes to plans, life's minor irritations eg freezer broken and that's all part of his cancer.
Stay strong & keep writing- your insights are really interesting.
So sorry to hear of your diagnosis, you seem to be taking it as positively as possible and have retained the ability to care for others feelings despite your situation.
Thank you for the pointer to Maggies, I'll definitely check that out.
My husband is at the same stage in his treatment as yourself. He's 69 but was fit & active before the tumour.
Look after yourself & take care
My husband was also diagnosed with Stage 4 GMB on 2nd January this year. He has had surgery since and is just finishing his six weeks of Chemotherapy and Radiotherapy which so far he has tolerated really well. I don't know what the future holds but am absolutely terrified. It is just the two of us. He remains remarkably positive so we are enjoying every day together. I don't have any words of advice except that talking helps.
Just thought I'd check to see how you two are doing?
Hubby has just had his first week of just the chemotherapy in tablet form, he seems to have coped well and now has 3 weeks before the next lot. His scan showed a reduction in the size of the tumour but that was mainly because it had been cut out via the surgery! At least it hasn't grown back.
I spent the first three months crying every day whilst I was out walking the dog but have now seemed to be more accepting of the situation and try to focus on things/little projects to keep myself going. I also try not to think about the future.
We are all stronger than we think and enjoying the present is all that matters for now.
Maggies at the hospital are an excellent resource, as are the McMillan Cancer Support helpline.
Hope you are both doing well
Well it has been quite a journey so far. My husband sailed through six weeks of radiotherapy and Chemotherapy then two weeks later the side effects started. We increased his steroids but he continued to deteriote - he became disoriented and could not communicate. I took him to A&E who where amazing and ruled out stroke and infection which left disease progression or inflammation post radiotherapy. It was inflammation and lots of subtle fits. They have managed to get his medication right and hopefully after almost three weeks he will home in a couple of days. We have had to postpone his chemo but he should be able to start it in a couple of weeks if things continue to improve. He is now oriented and back to being self caring with a few improving communication issues.
I have fluctuated from planning his funeral to remaining hopeful.
yes it’s deffo a rollercoaster journey!
you spend a lot of time struggling pain with quality of life for my partner!
he has communication problems when coming off steroids the tumour is stable for now ! Which is great news.
I don’t think he ever come off steroids totally when he does his speech goes and horrid side affects.
Hope your husband comes home soon and you enjoy some time together.