Mum to start treatment - glistoblastoma grade 4

Hey, 

sending you and your mum and family so much love and light. 

My dad was diagnosed with a grade 4 glioblastoma in January 2024 and sadly passed away in early August after the fight of his life. 

Prior to his diagnosis I was the primary contact with all medical professionals involved and was obsessive bout note taking, following biopsy and formal diagnosis this became almost obsessive, but in hindsight I know this was a Coping mechanism and helped me try to navigate my way through a situation that was so completely out of my control. It also helped me advocate for my dads care and medical needs as the illness progressed very rapidly with him unfortunately.

From my own experience…and research I would say the ‘12-18 month’ timeline is a rough guide, you will hear from lots of people who have lived beyond this timeline and sadly like for my amazing dad, those whose battle was much shorter

My advice would be to try to make sure someone is with your mum at all medical appointments, the amount of information and speed of treatment is intense and it was far too much for my dad to take in alone. I will be eternally grateful that I was able to take a career break so I could be there for my dad in the last few months of his life. It is an emotionally and physically intense journey for the person and those around them so cherish every special moment, try to enjoy just spending time with your mum before the chaos of treatment and appointments take over…and remember as a carer this is unimaginable news and you need to try to look after yourself and be kind to yourself too

Sending you so much love and will be thinking of you xxx

please feel free to message if you need someone to talk to who might not have the answers but absolutely knows how traumatic this news is to receive xx

I was diagnosed formally last July. Just come to the end of treatment. The 12 to 18 months seems to be quoted to everyone who qualifies for treatment and is pretty meaningless really. 
I dealt with the practicalities, will, power of attorney, end of life plan and funeral soon after diagnosis. 
At my first appointment there was a real danger of this becoming a 2 way conversation with my husband and the neurosurgeon. Hello! I am here!!! After that I told my husband he wouldnt be attending any more appointments! So to me its crucial to see what your mum wants! 
i want life as normal as possible. I work full time, ive been on a couple of holidays and I dont want to be treated as an ill person….because Im not! 
its a personal journey and I am well aware things may change . Best wishes to your mum

Hi Tashie

Thanks for your reply, I am glad you had gotten through treatment, well done to you! I appreciate you sharing your perspective, I worry I may sometimes be that overbearing person in meetings so will make sure that I am actually welcome! 

So nice you hear you have been away and continue to live as normally as possible, that is our goal too. 

All the very best x

Hi Tlj

I am sorry to hear about your dad's passing - definitely too soon but I know what you mean about it being the life of your life. Even though it's not happening to me I do find i switch from being robotic and super organised to just crumbling in fear for mum.and those who will be left behind. As a family we are trying to be strong and create memories

Thank you for sharing your perspective about meetings and career break - it's really helpful to hear and hope you have found a new normal as much as that's possible. X

Hi DD2025

a warm welcome to the group. So sorry to hear about your mum's diagnosis.  Life's too cruel.

I supported my late husband through the 3 years of his GBM journey so I can empathise with what you are going through.

To be honest, I really wish that doctors wouldn't give timescales. It's very easy to become obsessive about time when someone suggests that there are X months left. When G was first diagnosed in Sept 2020, pre-surgery the doctor said 18-24 based on his age/fitness (He was 50 and a marathon runner) Post-surgery that dropped to 12-15 months. Psychologically I think with the benefit if hindsight that I psyched myself up to be able to cope with the journey for that length of time. Those 15 months would have run out in Nov 2021. In Feb 2023 we were passed off to the local palliative care team by the oncologist and told that G had days, maybe a couple of weeks. In August 2023, the hospice doctor advised us to have our final conversations as G had days.  G passed away peacefully at the end of Oct 2023 - 38 months and a day from his diagnosis and  700 days after the 15months timeline ran out. This journey takes as long as it takes. Please try not to focus on timelines. I feel its healthier to focus on spending time with the person and making memories and being led by what they want to do and feel able to do.

G lived life to the full to the best of his ability during his journey. He went skiing in France with our daughter. He spent a week in Paris with me. He went on several boys' weekends ( I didn't ask too many questions about those) He continued to run and set PBs at all his competitive distances including marathon in 2022. When he could no longer run, he walked or cycled on his static bike in the garage. He even managed to appear in the TV series Outlander rowing a boat (opening titles of season 7).

None of us know how long we have and life is for living as best we can.

I would agree that someone should accompany your mum to every medical appointment just to make sure that the correct information gets relayed back. Its very easy to feel overwhelmed at these appointments so a second set of ears is never a bad thing. Establishing a good relationship and open communication with the medical team is also important. People panic when palliative care is mentioned but to be honest, being handed off to that team was the best thing that happened in our 3 year journey as a family. Simply having a local phone number I could call 24/7 for help lifted a huge weight off my shoulders. It also gave us time as a family to get to know the team and the community hospice nurses. That made a huge difference at the end of the journey as we weren't surrounded by strangers.

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.

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.

If there is anything I can support with, please just ask. I'll be open and honest. I'll not lie, this is an emotional roller coaster ride for all involved so please make sure you take care of your wee self here too. "Me time" isn't selfish, its essential to help you put yourself in the best shape to support your mum.

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

love n hugs

Wee Me xx

Hi Wee Me,

Thank you for taking the time to reply, it is appreciated.  Your D's story is inspiring- really showing the importance of being healthy and living to the max. I agree with you about timescales, I would rather have not known but mum asked in the appointment and I didn't want to override that as its her right to know. 

Thanks for the views on palliative care, really helpful. 

Treatment starts in a few weeks and I suppose alot rides on how she can cope through it- hoping to take mum as a family to the Maldives as she has always wanted to go- praying for some time to give her that. 

There will.surely be questions as we further this journey, so glad I found this group. It really has felt like receiving a virtual hug, which I really needed!

All the best xx

HI

Just to add, G coped really well with the 6 weeks of treatment. He was prescribed strong anti-sickness pills the first week and told to take them whether he felt sick or not to help his body adjust to the chemo tablet. He then had other anti-sickness pills prescribed just in case but he never needed them. The only real side effect he suffered was fatigue which kicked in around week 4 and lasted for a month after the treatment cycle finished.  There was minimal hair loss too - only a line around his scar. The hair grew back in quickly once treatment ended.

His main complaint was that the radiotherapy mask was too tight and that they kept squashing his nose. He also got the mask home with him at the end of the 6 weeks and insisted on wearing it in the car on the way home. He scared the life out of a woman on a bus we were stopped beside at a set of traffic lights! 

love n hugs

Wee Me xx

Hi DD2025  so sorry to hear about your mums diagnosis, it’s a scary time all round for her , you & all the family 

My husband has been diagnosed too , we got our preliminary histology post op yesterday to tell us High Grade Glioma Grade 4 consistent with Glioblastoma 

We will wait for the molecular results for more accurate diagnosis

We were meant to go on holiday yesterday on the results day , how ironic ! Our flight was similar time to the results meeting. We were going with my sisters & their husbands too as the start of my 60th celebrations . I said nothing matters now apart from him being well 

Wanted to ask you & others on here re flying & travel insurance as you mentioned hoping to take your mum to the Maldives 

Really hope you can make more magical memories with your mum as we hope to with my husband 

Sending love & warm wishes 

Hi

with regards to travel insurance, we used Travel Insurance | Voted UK's Number 1 for Customer Care | AllClear Travel for G for his skiing trip to France and for our week in Paris in 2022, At that time it was £300 for a week . 

Worth investigating but I will counsel that some of the questions that I was asked when I was setting it up were quite blunt/direct.

For my own travel, I have cover through my bank account so that price was jsut for G not both of us.

Love n hugs

Wee Me xx

I got the go ahead to fly quite early on but it was hard to arrange flights with so many medical appointments. I managed a few days in the ski season then a proper break in June. Insurance was expensive compared to the £17 a month I had been paying. I used staysure. I took an annual multitrip policy for europe only. It was about £800