All through 2020 my husband was just not 'feeling right' he had previously been diagnosed with vertigo towards the end of 2019 after experiencing some dizziness but that changed and he said his legs felt weak like he didnt have the same power in his legs. This from a very fit 46 year old man. It was lockdown and telephone appointments with the GP who still felt he had vertigo. As the year went on it didn't get better we knew something wasnt right but were not hugely concerned. By December and another consultation with the GP he was referred to Neurology being told 'don't expect an appointment anytime soon' by this point my husband had visible balance issues, he stumbled a lot , would randomly drop things and I'd notice he would sometimes slur words when we were chatting.
Fast forward to June 2021 he had a neurology appointment we had arranged through his work privately (it still took 6 months to get this appointment. By June it had been progressing month on month, his balance, coordination and speech were all affected. The consultant arranged a scan but the next available date was early August ! However by mid July he got progressively worse and I had to take him to A&E at our local hospital, it was a weekend so he was kept in and had a scan on the Monday where they found a lesion on his brain. We were transferred to an MDT team at the QE hospital. We had 2 months of tests, hospital stays still not knowing what this was until an open brain biopsy was done early September revealing a stage 4 aggressive cancer and eventually a confirmation of Glioblasyoma. Our world fell apart, we had been married for 18 years with a 16 year old son and just couldnt get our heads round this terminal diagnosis.
At this point my husband was no longer able to walk, the tumour is in the cerebellum which affects balance, speech and coordination. However he was determined and positive to fight this and take whatever treatments available.
Since October he has had 6 weeks of radiotherapy combined with temozolmide chemotherapy. He had a scan in Januaru which showed some reduction in the tumour, his medical were pleased and wanted to continue on with chemo, 5 day cycles every 4 weeks for 6 months.
My husband tolerated the treatment pretty well although devastated to lose his mobility, until a scan in April showed tumour growth. He was put on a different chemotherapy but a scan in June and again this month has shown continued growth. Our meeting this week with the oncologist was devastating, they do not feel there are any further treatments, there is a chemo, Carboplatin and Etoposide which I guess they had to tell us about but strongly did not recommend. They feel that with radio and 2 different types of chemo haven't stopped this tumor then this chemo will not either and only make him more sick. Apparently this one is much more aggressive and higher risks of infection and all sorts of other problems. They feel it is now down to quality of life and more or less saying his last few months would be better as he is now than putting him through a gruelling treatment with barely any chance or benefit.
Recently, literally weeks , he has been taking CBD oil daily not really sure what's best, any advice on that? Sorry for the huge long post but this is our story, we are devastated as a family, he is only 47 years old
HI Rosa17
to start with I'm sending you a huge virtual hug. I really feel your pain here.
My husband (then 50) was diagnosed GBM4 in Sept 2020 after he had a funny turn out running where he lost the ability to understand words/read or speak. He had surgery to debulk the tumour followed by the 6 weeks of oral chemo and radiotherapy. In Jan 2021 he decided he didn't want any further treatment and would let nature take its course. To date there has been minimal tumour regrowth but mentally he has continued to deteriorate slowly but surely. We're due another round of scans and appointments in Oct and if the medical team say the usual "No change see you in a few months" I won't believe them....we can see he's slipping.
Physically he's still in great shape fortunately. The issues are all mental/cognitive so we've not explored or experienced many painkillers or CBD oil. Personally I took it for a few months in 2019 for chronic pain prior to stomach surgery and found the CBD oil took the edge off the pain and the anxiety. It's perhaps worth a chat with your CNS or GP for their thoughts. From memory, it can impact blood flow so definitely worth checking.
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.
Hang in there. If there's any support I can offer, please just ask. I understand what a gruelling emotional rollercoaster ride this is for all involved.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Hi Life Detour,
I'm so sorry to hear about your husband. It really is a dreadful disease, the worst of the worst.
We have been trying to make memories recently although its challenging for my husband with his mobility but I do agree it is important.
My son is at a very difficult age and has struggled with it. His way of coping is basically ignoring it's happening almost.
How on earth do you cope after losing them? 
Hi Rosa
I won't lie, it has been the toughest time in my life but somehow you find the will to go on. I promised him that I would be "alright" and try everyday to be as good as I can. Some days are better than others 
My sons were older (30 & 27 ) when their dad died. They dealt will it differently from one another and there is no right or wrong way with grief. I found it hard to be there for them as my grief was so immerse but we have supported each other as much as we could.
My heart breaks for you and your boy
HI Rosa
lovely to hear from you again. So sorry for your loss. Even though we know its coming, nothing really prepares you for it. I lost G at the end of October 2023.
I feel for you about your concern for your son. I'm in a not dis-similar situation with my 23 year old daughter and I wish I knew the answers. There's a good link on the main website that might give you some pointers Coping with death as a young carer | Macmillan Cancer Support. Support with grief | Macmillan Cancer Support Coping and adapting after loss | Macmillan Cancer Support Something I have said to both my kids throughout G's journey in an effort to prepare them for the end was that we will all go through a different grieving journey as we all had different relationships with him. It takes as long as it takes and there's no right or wrong way to feel or to cope with it. The important thing is that we support each other through it.
Some counselling might be an idea if your son is receptive to that idea. Talking does help. Spending time out of the house together having some quality time might also help. Try to be guided by what he needs rather than trying than what you need.
Right now I desperately want and need time with my daughter but she's made it clear she needs time and space. As a parent you're torn - do you do what's right for them or for you? In this case I'm trying to do what's right for her.
It's not easy but you will find your way through this phase of the journey. Please remember that you're not alone. We're here for you and the helpdesk is there too should you need them.
One step at a time and endless patience and you'll get there.
sending you both a huge virtual hug and lots of healing energy.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
