Difficulty initiating

Hi, I’m sending love and support, and I’m glad it sounds as though you’re not dealing with him alone. My dad was diagnosed with a glioblastoma over 10 years ago so my memories are becoming hazier. If your dad was only recently diagnosed, maybe you haven’t yet had a biopsy or a plan for moving forward? Of course he’ll need someone with him when he has his appointments - brain tumours affect people differently depending on their location in the brain (and many other factors) so he may be feeling confused due to the tumour, or just in a state of shock. Be gentle but firm with him, and if you really can’t get him to move, maybe ring the hospital and tell them what’s happening. They will have dealt with situations like this, I’m sure.

I wish I could help more, but I’ll be thinking of you. If you have questions or just want to offload, please just say

Alex xx

HI

a warm welcome to the group. Sorry to hear about your dad's diagnosis.

I supported my late husband through the three years of his Glioblastoma journey so I can empathise with what you are going through. The diagnosis is a lot to take in for everyone involved. These tumours impact everyone differently as it depends on where it is in the brain and what is being impacted by it so its not impossible that it is the tumour itself causing the behavioural change. You didn't mention how recent the diagnosis was or your dad's age. These too can impact things. Assuming your dad understands his diagnosis, he could simply be scared at this point. Denial was my late husband's key coping mechanism throughout his journey.

Hospital appointments are also emotional and stressful, especially the early ones. Its important to have someone accompany him so that you know exactly what was said and what the plan is etc. Perhaps if you reassure him that he's not going to be facing this on his own it might help but you also have to be prepared to be very firm with him. Can I suggest that you tell the doctor about the behaviours as it may be something they can even out with medication?

One thing you will need throughout this journey is endless patience.

This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

I personally drew a lot of support from this group plus Glioblastoma multiforme brain tumour forum | Macmillan Online Community and Cancer carers forum | Macmillan Online Community during G's journey.

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.

For now though I'm sending you a huge virtual hug and lots of patience.

love n hugs

Wee Me xx

He’s 63. Hes living with my mum so its hardest for her but i live round the corner so am helping out as much as possible. My mum goes to all the appointments with him. 
He’s had his diagnosis in stages, we found out he had a malignant mass in February but only this week has it been diagnosed at glioblastoma after a biopsy.

He will start radiotherapy in the next couple of weeks, meaning my mum will need to get him to the hospital 5 days a week which she very worried about. It really doesnt seem to be about the emotions alongside hospital appointments i dont think its that deep. I honestly think the tumour has taken away his ability to just get on with it if that makes sense. Its very hard to know what to do. 

Hello

As a person who was diagnosed last July, I come from a different viewpoint. Advance apologies therefore if my comments appear insensitive. When i was diagnosed my consultant said, many people in your situation decline treatment and enjoy the time they have left. 

I was taken aback by this ! However, nearly a year in I have much more empathy with that line of thinking, desipite having had surgery, chemoradio, and now being on round 5 of oral chemo. 
All with no side effects 

. however, i understand for many, particularly as we are all told its terminal, people simply choosing a palliative approach. 
My husband is not allowed to attend my appointments. As I said to him, its my brain, not his, and its me who will choose what happens! Its important I do what I do for me not someone else! 

I appreciate things change but right now I work full time and do everything I always did. Just my two pennyworth! 
good luck to you and your dad! X

yes I can completely understand it’s your brain your choice.
 I think with my dad it’s not the fact that he doesn’t want to go to the treatment. It’s the fact that he has lost his cognitive ability to get himself there. He definitely would not be able to work like you. we are very aware that his case is terminal but I think we are hoping that the radiotherapy will at least give him back a bit more of his cognitive ability for a time. 

Afternoon just reading both accounts, about six years ago , I was diagnosed with a terminal brain cancer , the only thing i remember is the consultant got all my family in and delivered the verdict. I had chemo etc nothing work told it’s was a rare form. Family arranged to get me home with a care package etc. My memory has been wiped about twenty years worth , because it affected by bladder control had to have catheters. Starting to get stronger and more with it, my new scan showed it’s now inactive. Now it’s just over six years after the first diagnosis, my son had twins while I was in hospital for three months having the first diagnosis. I don’t remember anything he shows me pictures with tubes etc , could sit up, or feed myself no memory of it. 
Yes left with affects of it like memory loss, unstable when walking now got a stick, loss of right side hearing and catheter. Had to retire, and surrender driving license and passport . It’s a horrible disease and our brilliant NHS get on top of one version then comes a new one that doesn’t behave like the ones before. So seeing all my grandchildren growing up I am sure gave me something to fight this. Yes life has changed but I’m still here. Hope me telling my story as a patient with tumour might give you some comfort that things might change. When talking to my son now he thought I would never see the twins or come out of hospital. He showed me pictures of me holding the twins, I’ve got tubes etc they only a few hours old. He got the permission to take the photos because they didn’t think I would come out let alone be where I am now. So don’t give up hope nobody knows what this horrible disease will do. 
All the best got my fingers crossed for your journey. 

Goodness, you must certainly have exceeded all expectations. Might I ask why you had to surrender your passport? Driving licence yes, I have had to stop driving, but I have already been away once and will go again in May once my treatment finishes, and I have never heard of giving up a passport ! 

• I think my son said I was so bad at beginning, they were thinking about taking me away but couldn’t get insurance etc . I don’t remember much about it, I really miss driving, when leaving school got a job as apprentice technician, went on to represent South Devon College in European Technician of Year Competition, where I came second. Not 100% about passport. 

Hi 

My late husband was unable to work after his diagnosis. He was 50 at the time. His tumour impacted speech, language and understanding and quite quickly he lost his ability to read and his sight was compromised. He had surgery followed by 6 weeks of chemo/radiotherapy in combination then declined all further treatment. In Nov 2022 when the scans showed several fresh tumours he was again offered chemo and he declined, opting for quality of life over quantity. Several times over the three years he said he wished that he'd never had the surgery and the treatment and just enjoyed the time he was given. 

Hearing those things was hard and is still hard to type here. If you are confident that your dad fully understands his diagnosis and the situation then you need to be led by what he wants to do and what he can cope with doing. Its incredibly hard to be objective here when its someone you love but ultimately its them who have to endure the treatment etc.

The radiotherapy/chemo combination in the short term with G made his cognitive ability worse but once the effects of the radiotherapy wore off (about a month or two after the last treatment) his cognitive ability did return to where it had been around about the time he had his craniotomy. He was never the person he was sadly.

These tumours are evil and everything involved in a GBM journey is an emotional rollercoaster for all involved. Sorry if I sound harsh but I just want to be open and honest with you. 

When we spoke to the oncologist in Nov 2022, he said the chemo at that point had a 1 in 3 chance of perhaps extending G's life for 3 months. He refused the treatment as it would curtail his lifestyle, limited as it was by then, but he could still run and that was all that mattered to him.  In Feb 2023, G had his last scan and the oncologist said he thought he had days, maybe a couple of weeks and discharged us into the hands of the local palliative team. G was still able to run up until Aug 2023. He finally passed away peacefully in late Oct 2023- 8 months to the day of when we were first told he had days left. Read into that what you will...

I'd encourage you as a family to gather all the facts from your dad's medical team and get your mum and dad's honest opinions and then take things from there. There's no right or wrong here, only the journey that your dad can cope with.

sending you all a huge virtual hug and lots of strength

love n hugs

Wee Me xx