Hello everyone
I am new here .... my husband was diagnosed with a grade 4 glioblastoma in August. We are both Headteachers and were looking forward to our summer holiday with our two young boys (aged 10 and 12). We had the most difficult summer I could imagine. He started to forget things and muddle words up ... the first trip to the doctors told him it was stress related and to try going to bed earlier ... I knew it was something more. I made him go back a week later and he was there for 2 hours and eventually sent home after blood tests and told he had high blood pressure so was given some meds. Within a few days we were asked to go for a scan ... he was in the room for not even 5 minutes and sent back out ... we were told to go to A&E to check in - we didn't know why. We waited for 2.5 hours and were called in to triage who asked why we were there .... we didn't know. Eventually, we were sent to an examination room in A&E and a doctor told us there was a large 6.5cm mass on the left side of his brain. After 24 hours in A&E, he was checked in to the oncology unit. I was in pieces ....
When I went back to visit the next day, I was given lots of information about brain tumours and packs to support our young boys. He was in for a week and the deterioration was dramatic. The only way I can describe it, was I was losing a part of him, each day, it was like he had dementia. He forgot our boys names, birthdays and became obsessive about work. 80% of the time I visited, I could have been anyone. Every time I left the hospital, I would sit and cry in my car.
A week later, he was discharged ... with bags of medicines ... I was overwhelmed. It was like taking a 90 year old man home, who had no idea what was going on.
The following day, we met online with the surgeon. My husband does not remember any of this. She told us she was sure it was a grade 4 glioblastoma and the differing prognosis from if they did nothing to if they debulked and followed this with radiotherapy/chemotherapy. It was explained to us that it was incurable. She also showed us, on the scans, a large cyst attached to the tumour. My husband could not answer any of her questions ... he didn't know who I was or the names of any day to day objects she held up. Due to not knowing if the confusion was the tumour or the cyst, she said it was too risky to try and remove it all so she planned, in a weeks time, to drain the cyst and take a biopsy of the tumour. I cried after the meeting ... my husband was ambivalent ... he didn't understand what was happening.
The following evening, my husband was in bed ... I heard a loud noise ... he was sat on the toilet and had projectile vomited everywhere ... he was muddled and trying to clean it up with a tiny piece of tissue paper ... I called the hospital, they told me to call an ambulance straight away. I dialled 999 and they told me it was a 5 hour wait. I said I would get him there myself. In the meantime, our two boys had ran outside and were crying and hiding in the garden .... when I came back after reassuring our boys ... my husband had put himself in the shower, then fell, I pulled him out and he was shouting at me ... he never shouts at me ... he is my soul mate :(
I enlisted help from neighbours to sit with the boys, help me get my husband in my car so I could get to A&E .... he projectile vomited all the way there ... it was everywhere in my car (a mini!!) .. all over the windscreen ...
I got him straight into A&E ... he was there in a room for 12 hours ... too long! He was dying in front of me ... fitting, wetting himself, curled in a ball and unaware of me ... his breathing started to change ... I kept asking for help and explaining he wasn't like this when we left home ...
10.30am that morning, he was blue lighted to Cardiff and they operated on him, removing as much as they could of the tumour and the cyst.
Miraculously, my husband has returned to me ... the confusion has gone and he was home within a week ...
He has now started his 6 week radiotherapy and chemotherapy ...
We have been told several times the prognosis of 12-14 months ... but could be more, could be less.
We have explained honestly and openly to our two gorgeous boys what is happening and what this means.
Work have been great for my husband and he is being well supported. But we have been told by the doctor that he should not return to a high pressure job.
That was the 6 week summer holiday ... I returned back to my headship at the start of September and during this, also moved house so we are all now in our new family home.
I am exhausted, scared and had a glimpse of what may be in the future ... and it was devastating.
Our eldest started High School this September and both boys are in to sport so I am doing my best to get everyone where they need to be and supporting my husband too. I am a complete control freak as it is (something to do with the job I think!!!!) and want to be there for everyone .... it's a tough ride and I have been reading your stories too and can this is the journey we are all on.
Anyway .. sorry for the long ramble ... I have had an emotional weekend and felt tearful ... wishing my 'normal' was back again .. I feel like I have a weight on me all the time and it doesn't feel any lighter. Then I found this group ...
My husband is amazing ... so positive, loving and kind and I know we support each other always ... I just can't bear to think about life without him yet am so grateful that we have time as we were so close to losing him.
Thank you for listening to me x
Wow, that is quite a story. I think that's as dramatic an introduction to this thing as I've ever read on here.
I was so pleased when you wrote about the surgery bringing him back. Given how bad he was I was sure you'd say that they decided surgery was too risky.
I support my wife who was diagnosed In June 2022. Similar story to you but without the projectile vomiting 
. Her tumour is on the right side so it's information processing and mobility that are impacted mostly. Like your husband she was able to have surgery then went through radiotherapy and chemotherapy. Her last chemo round was in April and her latest scan in August shows the remnants haven't started growing again, yet.
We have two boys as well who were 14 and 12 at the time. They have been an immense support for me and have had to take on lots of jobs round the house their mum can't do any more. We've been honest with them about everything from the start and after a few initial wobbles this new normal has become our daily life. We've been supported by the Ruth Strauss foundation who work with families with young children and a parent with incurable cancer.
There's lots of really useful information on the Macmillan site about different aspects of cancer so if you haven't already, have a good browse and come back with any questions. I found it really helpful just reading through the threads in this forum to see what others' experiences had been like. Although we are all looking after someone with, or suffer from, a GBM we all end up taking slightly different routes depending on how it progresses and local care provision.
When it comes to the practical and emotional challenges of supporting family and friends you may also benefit from joining our Carers only support group where you can connect with others navigating the same support challenges.
Have you or your husband been offered any counselling at all? Either way it’s always good to talk so feel free to 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.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing. I joined up with calls run by the Brain Tumour Support charity who do a fortnightly Zoom call for friends and family of those with grade 3 or 4 brain tumours.
I hope his treatment goes well and keep us posted as it really helps to know there are others out there going through this who can empathise and provide practical advice and a bit of moral support.
Sending a virtual hug,
Chris
Hi Sunflower
a warm welcome to the group. What a summer you and your family have had. My heart breaks for you. Nothing prepares you for that diagnosis.
I have been supporting my husband through his GBM journey. He was first diagnosed out of the blue in Sept 2020. He was 50 and a total fitness freak. His initial tumour was in Broca's Area of the brain so his cognitive behaviour/speech and understanding was impacted from the outset. Our initial journey wasn't as traumatic as what you have been through. He had a major seizure 2 days before his op and to be honest, has never been the same person since. He had surgery to debulk the tumour followed by the 6 weeks of oral chemo/radiotherapy. The neurosurgeon gave him 12-15 months. In Jan 2021 he declined all further offers of treatment - a decision I have had to respect.
Now, three years on from the initial diagnosis, he's still with us, albeit a very broken version these days. He remained stable until Nov 2022 and things have slowly declined since the end of Feb 2023 when we were passed into the palliative care phase. Physically he's still incredible. He was a marathon runner and that fitness has stood him in good stead. He can no longer run due to a DVT in his left leg but he still pedals on his bike in the garage for 3-4 hours a day and then walks 6-7 miles most days. I have no idea how he is managing this. Cognitive/behaviour wise its more like someone with dementia rather than cancer and that's so hard to watch unravel.
As Chris has already said, this is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it as you've seen by the responses below/above. There's always someone to hold your hand and to offer that virtual hug when its needed. You're not alone. We've got you.
I've written a few blogs for MacMIllan and thought these two might help here.
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
Please don't underestimate the toll this is taking on you. I'm not too proud to admit that after three years of riding this emotional rollercoaster, I'm exhausted - mentally, physically and emotionally. Please take time to take care of your wee self here. Taking "me time" isn't selfish - its essential to help you keep your batteries recharged. Even a few minutes to walk round the block or to sit with w book and a coffee can make a huge difference. I'm still working from home but have also recognised that my concentration is pretty shot and am fortunate that my employers have been really supportive and flexible here. Over the past 6-8 weeks I have started to finish my day a little earlier. Like you I can be a bit of a control freak but actually the world doesn't stop turning if you delegate some tasks...or so I have discovered.
For now though I'm sending you a huge virtual hug and lots of positive energy. Stay strong.
love n hugs
Wee Me xx
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