Very new to this

Good evening Sophs I am 61 dad and grandad. My tumour journey started the same as your dad my son tell me how bad I was when admitted to hospital for three months while they diagnosed my tumour. I can’t remember anything about that time, cannot remember operations, chemo or what I went through. My son showed me photos with tubes going everywhere. Apparently I told the consultant where to go, and would pretend to be a sleep when physiotherapist came around , i at first couldn’t sit up or walk. My son thought I would never see my two born grandchildren. 
All I can say I know back living on my own in a flat, cooking and cleaning etc. Last scan shows it’s now inactive,. Sorry cannot remember name of tumour, or I’ve ever remember is the consultant getting all family in and telling us I had rare form of brain tumour, didn’t respond to chemotherapy so I stopped it and he telling us I had three months to live. That all I remember, and that was three years ago. 
This horrible disease is still providing the doctors a pain. 
Really hope your dad can come through your families journey and can come out the other side and can start to prepare to start a new journey which is what I am doing now. Really hope your dad gets all the treatment needed. Please keep in touch if you want. 
Graham

Oh Graham that sounds awful for you but I’m glad you are on the mend. I just feel so helpless. My dad hates being in hospital and just wants to come home but my poor mum can’t cope with him. One more sleep until we find out what his treatment plan is. Thank you so much for reaching out it means a lot 

Thanks for reply my x left me , she was having affair while I was in hospital for three months. So yea understand your mum’s thoughts, my son tells me my mood changed so much , I didn’t give mum any other  option. This disease mucks everything up. I hate hospitals as well , horrible food, my family used to bring something nice in went they visited. Hope your Dad gets some good results and you all can worked together to get you all through this. Couple of years ago all I could see is darkness but now there is sun shining through the clouds. Keep strong and positive. If I can help in anyway please contact me personae email is grahamt56@icloud.com.

Oh Sophs, that sounds horrific treatment. Please make sure you raise a complaint on behalf of your dad.

There's never a good time to get a diagnosis but I can imagine it is more challenging to get answers over the festive period. In the meantime, take things one step at a time. Focus on what you know and not the "what ifs". It would be a good idea to write down all your questions, fears, concerns ahead of the next appointment. Take those notes with you and let them act as a script to make sure you don't forget to ask about something that's important to you. There's no such thing as a a silly question.

This is a safe and supportive space so please reach out here anytime. There's always someone around 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.

For what it's worth, I supported my late husband through his 3 year stage 4 brain cancer journey and a lot of his symptoms were cognitive and very similar to dementia so perhaps the staff on the dementia ward might be more understanding of your dad's situation than in a general ward.

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 positive energy.

love n hugs

Wee Me xx

Thank you so much for your kind words and advice. Yes I’ve spoken to PALs today and tomorrow we should hopefully have a plan (if there is one) I’ve just got back from the hospital now and he seemed a lot calmer today. Thank you again. It means the world to know you guys are there 

Worse news ever. Stage 4 giroblastmia and they are offering no treatment. They have given us 3 months so we are just getting things in motion to get him home x just awful 

Oh Sophs I am so sorry. That's the path we walked too. (The gist of our story is in my bio)

Take time to process this but please also bear in mind that timescales are best guesstimates based on published averages and no one is average.

We're here for you. We get it. We understand.  You're not facing this journey alone.

You might also want to explore this group Glioblastoma multiforme brain tumour forum | Macmillan Online Community. I personally drew a lot of support from it.

sending you a huge virtual hug and lots of strength.

Wee Me xx

I’m so sorry, the only thing I remember about my cancer and apparently In hospital for three months until my son and x fighting to get me home. With three months as chemo etc failed. Three years later still here and now living on my own cooking cleaning etc . Hope my story gives you some hope. All my wishes etc are going to you and family. Please stay in touch and keep your chin up.

Hi Mee Wee

we got dad home and have sorted support for my mum. He is much calmer at home but still confused but I guess that is all part of the journey. I just feel now we are in this awful no man’s land of waiting for the next thing. He is very scared re what is to come and I’ve just spent a few hours googling what to expect and I really wished I hadn’t. I want to take each day as it comes but it isn’t that easy :(. What a horrible mean disease.

sophs 

HI Sophs

Please stay away from Google and I mean that in the nicest way. Its a scary place.

Glioblastoma are evil tumours. There is no denying that.

Let me tell you about the latter stages of my late husband's journey and hopefully it might calm some of those fears. 

G was diagnosed in Sept 2020 and even with treatment and surgery was given 12-15 months. G was beyond stubborn and ridiculously physically fit  so 12-15 months were never going to be enough for him. He was still running miles and miles right up until Aug 2023 when thigs started to head downhill. In late Feb 2023 we were passed into the palliative care phase by the oncologist who told us he had a couple of weeks, maybe a few more. In Aug 2023 he started to suffer from focal seizures where he would zone out for period of time, sometimes a few seconds, sometimes a few minutes. He was admitted to the hospice to stabilise things and again the Dr there said to my kids and I to have our last conversations as she expected him to only last a few days. G came home a few days later and due to developing a DVT could no longer run. Instead he walked miles every day and spent time in the garage on his bike. His friends would drop by and take him for coffee or dinner once or twice a week. They even took him out in a rowing boat for his birthday and went to the pub for lunch and birthday cake and they rowed him back across the River Clyde wearing party hats. By mid-October, things weren't great. He was difficult to say the least. On 21 October, he spent 3 hrs on his bike in the morning in the garage, went out for the afternoon with his friend. They went for an ice cream sundae then took a trip in the ferry before taking the scenic route home. He had a great day. That night in his sleep something happened - stroke/seizure/DVT blew- and by the Sunday morning he was in a bad way. The local community nurses were incredible. The hospice couldn't admit him until the following day but throughout the Sunday the community team and the carers were in and out about 6 times. They were fantastic. He was largely  unconscious from about lunchtime and he was calm. he wasn't in any obvious distress. He was transferred to the local hospice on the Monday at lunchtime. They were absolute angels and took such great care of all of us. They kept him calm and medicated and he very peacefully slipped away on the Friday afternoon. 

The main thing he was scared of was pain and the nurses made sure he was as pain free as possible. 

It was the hardest few weeks of the journey, I'll not lie about that, but it could have been so much worse. It certainly wasn't like some of the horror stories online.

I'm not saying any of this to scare you. If it has, I humbly apologise. Everyone is unique and everyone's journey varies slightly but the key message is that the local community team and local community hospice nurses are key here.  If your dad's GP hasn't introduced you to them yet please ask for a referral. For me, just having their number which was available 24/7 was a huge weight off my mind. It also meant that as a family we had got to know them and when the time came we weren't dealing with total strangers. That helped enormously.

If there's anything I can do please PM me and ask. 

sending you love and light and strength and hugs

Wee Me xx