It has taken me a while to find the confidence to write, but from reading your sharing I have found great comfort and support from this community. Sharing your experiences, bravery and wisdom has helped during some dark times.
In September 2021 a bomb blew our lives apart and I feel like I’ve been trying to glue the pieces back together without any glue since.
My husband went to the local shop in the evening. An hour later the police were at the door saying he had a massive seizure at the wheel, has crashed the car and taken to hospital. He had never had a seizure or even a headache before. By November 2021 he was diagnosed with a huge inoperable glioblastoma and given 12-18 months to live. He was well at the time with no symptoms, he is a very intelligent, strong man, not at all into fitness, but he was an active 58 year old, and a nurse for over 30 years before this terrible diagnosis and he had to retire.
Since then he has had radiotherapy and chemotherapy. Initially he had to stop the chemo and just have radiotherapy as he became very unwell. Then had 6 months of chemo. He has had many complications. Suffering extreme sickness and pain, episodes that may be seizures and we have been in and out of a&e at least 30 times. Some symptoms have been unusual but he is an unusual man.
It is heartbreaking to see him so unwell, I feel terribly guilty all the time, even if I’m in the loo for too long. I have taken a career break to care for him. We have a son and daughter in their twenties living at home, they both work full time. One minute I’m so grateful they got to have their dad until adulthood when so many have young children while going through this. The next I’m so sad for them and that he won’t get to be there at their weddings, grandchildren and life events. Then feel guilty again.
I am a positive person, always looking for the solution and how I can fix things. This I know I can’t.
Right now he is sleeping a lot and eating very little. Its a balancing act to manage the pain and sickness. His appointment with his consultant last week was very confusing. His last scan was stable, no more treatment and they will see him in 3 months. When I have explained his symptoms the doctor said they were nothing to do with his glioblastoma. He gets confused for a second, gets goosebumps all over and then gets sick. Many times the sickness won’t stop which is why we have ended up in hospital so many times.
When he was diagnosed the doctors were surprised he wasn’t getting symptoms. Now 20 months down the line they are surprised he is, and saying his symptoms are not related? I feel like I’m going mad. Has anyone else experienced anything like this? Physically he has lost a lot of weight and muscle, he is very slow, but he is mobile. His short term memory is not good and he gets upset at times. I am so thankful he is here longer than he was given at the start, and so again feel guilty for even thinking anything negative.
Sorry to go on so long, once I started I couldn’t stop. I wanted to thank everyone for sharing, it feels awful to say I found comfort as I wish no one had to go through this. But a shared experience does help to not feel so alone.
Thank you for listening x
Hi
a warm welcome to the community and thank you for sharing your tale. Having read it I just want to reach out and give you a huge hug. These tumours are so cruel and its an emotional roller coaster ride for all involved.
If you've read the posts you've perhaps caught the gist of my tale. I'm supporting my husband who was diagnosed in Sept 2020. We have two children in their 20's but only one still lives at home.
In my experience some of what you mention fits with what we've seen here too. G has practically no short term memory now but his GBM impacted that right from the start. His initial tumour was in Broca's area of the brain that controls speech, language and understanding so most of his symptoms are cognitive and more like dementia than cancer. That brings its own challenges and these days its like trying to reason with an over tires spoiled toddler.
His tumour remained stable for just over 2 years then things began to change. He only ever took the initial 6 weeks of treatment and declined the option of further chemo. His key coping mechanisms are his fitness regime and total denial. He's lost a lot of weight too and is now about 59kg. His tumour has also severely compromised his eyesight over the past 4 months.
Something 've come to realise over time is that everyone is unique and that these tumours impact folk in so many different ways. This is a safe and supportive group and I'm fairly confident that someone else will be along shortly to add their words of wisdom. There's always someone about here to listen who gets it, someone to hold your hand and offer that hug when its needed. You're not alone. We're here for you.
It’s always good to talk so please remember that you can also 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
I know that you've explained the symptoms to your husband's medical team and its not given you the answers you need. Have you tried talking to your GP? Just a thought.
Please make sure that you are taking care of your wee self here too. This is a gruelling journey that none of asked to go on. You need to make sure you take time for yourself to keep your wee batteries charged, even if its only 10 mins in the garden with a book and a coffee or a walk round the block.
For now though I'm sending you a huge virtual hug and lots of positive energy. Stay strong.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Hi there,
I have little more I can add to WeeMe and Pete's usual awesome responses. I'd only reiterate what Pete said about the consultant's words. From reading hundreds of stories now it's clear that a brain tumour can cause just about any symptom you can think of. When we tell my wife's consultant about something new he just shrugs and nods sagely as if to tell us that yes it could be related but it doesn't necessarily mean new growth. The glioblastoma and subsequent treatments inevitably cause damage and it can take time for this to show up.
And I totally get what you mean about lurching from being positive and grateful for what you've had in your lives to then being resentful at what you're likely to lose or have already lost. I think it's totally normal and would be quite odd if you could always stop the negative thoughts ever coming so try not to beat yourself up about it.
We're on a little break at the moment in North Devon with the kids just enjoying the sunshine and focusing on the here and the now and doing my best not to think about what's to come. But I know when we get back I'll have my sad moments again.
And lastly thanks for posting. It's such a comfort to know there are others out there who really do understand and that we're therefore not alone.
All the best
Chris
Sometimes we need to hear it from a stranger. Weird but true.
I certainly don't claim to have all the answers when it comes to dealing with this. I'm still figuring it out as our journey continues but anything I've tried that's helped then I'm happy to share.
I've written a couple of community blogs for MacMillan that might help...if not they will go with that coffee I mentioned earlier. Here's the links
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
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
