Grade 4 diagnosis

Hello. 
Sorry to hear your story. Not sure I can be very helpful, I have a glioblastoma which has been treated with surgery/ radiochemo/ then 6 months of oral chemo. 
my prognosis was initially 9 months, then after surgery 12 to 18 months. I am 14 months in. 
I would say write a list of all thats worrying you so you are prepared for your meeting. 
good luck. 

Hi.
Thank you so much for taking the time to respond. It’s really encouraging to hear other people’s stories and I am glad you were able to have surgery and treatment. 
Thank you, I will make sure to do that. :) good luck to you too xx 

Hi Bumblebeez

a warm welcome to the online community. Sorry to hear about all that you are going through. Life's too cruel.

I supported my late husband through the three years of his Glioblastoma journey so I can empathise with the emotions you are going through to an extent. 

I believe it is fairly standard for your medical team to fill out the FN1 form but it should perhaps have been discussed with you first.

Hospice is a word that scares people but it really shouldn't. Hospices offer so much tailored support to everyone impacted by a cancer journey. They are not just places where the journey may come to an end. We were referred to our local hospice early in G's journey when they were offering him emotional support and support groups to attend. Being the stubborn man he was, he declined. When we were handed off to the local palliative care team two and a half years later we were also introduced to the community hospice team and they were absolute lifesavers for the family. G had elected to die in our local hospice and as a family we take some comfort from the fact that those angels kept him pain free but they also wrapped their arms round the whole family and supported each of us. In the 8 months leading up to that point they had got to know us as a family and that made a huge difference.

Ahead of your appointment I would suggest that you write down everything that is worrying you at present, all the fears/concerns plus any specific questions you might have thought of. Take the notes with, and also try if possible to take someone else along too. The notes will act as a script and help ensure that you don't forget to ask about something that is important to you, There's no such thing as a silly question. If its preying on your mind, ask.

Timeframes are something we came to have a love/hate relationship with. Everyone is unique and timeframes are best guesstimates based on published averages. No one is average. This journey takes as long as it takes. IN G's case, we were told 18-24 initially then post -surgery that was reduced to 12-15 months. Twice we were told he had a few days, maybe a few weeks (once in Feb 2023 and again in Aug 2023) G was stubborn beyond belief and stretched that out to 38months and a day.

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.

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 xxx

Hi Wee me, 

Love your username :) Thankyou for telling me your story, it’s so reassuring knowing there’s a community going through this too. So sorry for your loss. 

I’m glad the hospice were there for you and made it an easier process, there is comfort in that.

I will make sure to write down my questions, I have a couple people coming with me this time for support. :) 

You’re exactly right about timeframes. Part of me doesn’t want to know but then another part really wants to know. Did it make it harder or easier for you both knowing? I’m glad you he stubbornly stayed with you for longer. <3 I suppose it’s the same with treatment, if treatment makes quality of life worse is it worth it, just to live a bit longer. Everything is so unknown, very annoying there’s no certainties. Xx

My partner is taking it really hard. It almost feels like it’s worse for him not me. Especially because at the moment I am completely fine and our life is the same until it isn’t. 

Thank you so so much, I will be utilising the resources and support. It’s amazing how much there is.
I have received your hug and returning it xxx 

Hi

Personally I found timeframes detrimental. It was as though I had myself psyched up to be able to cope for that length of time, then that date passed and I was left feeling more vulnerable in a way. I journal regularly (it was my primary coping mechanism through G's journey and still is) and after the 15 month date passed I referred to each passing day as Zero XX. We had 700 "zero days". Everyone is different and there really is no right or wrong answer to the timeframe debate. Like everything else its a matter of what you feel you and your partner can cope with.

Treatment options may vary but G had 6 weeks of oral chemo and radiotherapy in combination about a month after his surgery. He coped really well with the treatment with no major side effects but he decided that was it. He declined all other offers of treatment. It was his decision to make and one I had to respect. He always said "quality over quantity" and boy did he live life to the full over those last couple of years. In 2022, after those 15 months had long since passed, he went skiing in France with our daughter, he set personal best times at all his competitive running distances up to and including marathon, he spent 5 days in Paris with me and he even managed to appear as an extra rowing a boat in series 7 of the tv series Outlander. He also had several boys' weekends that I really didn't ask too many questions about!

love n hugs

Wee Me xx

That makes complete sense, the time isn’t long enough but also each day is so long. Wow that’s a lot of zero days. It does really depend, I think my partner really wants to know every detail, so he might cope better knowing but I don’t know. 

That’s amazing! I love that. Really lived his life to the fullest and even through the grief those memories must be lovely to think back on. 

Thank you for sharing xxx 

My partner is also really struggling, she has been off work since I was diagnosed with glioblastoma at Xmas 2024. She also has Parkinson's which has been noticeably worse since I was diagnosed. I think because I still look fine she struggles to process and accept my terminal diagnosis. As the saying goes it is harder to watch someone die than actually die, particulary if it is someone you love. It must be really tough for your partner and of course tough on yourself, please pass on my regards to your partner and accept a hug from me. 

Hi, thank you so much for responding.

Is your partner off to look after you or because of her own struggles? Mine needs work to cope I think, able to be distant from it. 
I’m glad you’re able to look after each other in this time though. 
Have you been through any treatment, if so do you think that is why you ‘look fine.’

I personally feel better than I was before being diagnosed, as I had so many symptoms and at that point I needed looking after more. The terminal nature of brain cancer is just so shit. 
You are completely correct, I can’t imagine being in the other shoes. I would be more of a mess. 
Thank you so much, I’ve received your hug.
I hope you and your partner make lots of lovely memories together xxx 

There are lots of different things at play why Claire is off work. She is really struggling with her mental health and Parkinsons but we are fortunate enough to be able to manage financially, we are not materialistic people, so I have said to her take as much time off as you need, it does'nt matter if you don't go back to work. I have had a few falls due to right leg weakness after the surgery (left side parietal lobe) and she says she would rather be at home with me for the time we have left rather than being at work worrying. 

Symptom wise I had virtually none. I was having drink at my neighbours late on Xmas eve and started tipping/spliing my drink without realising I was doing it. Because I rarely drink everyone just thought I was drunk. I went home and have must have collapsed, I was found on the kitchen floor and was taken to A&E. An emergency CT scan on Xmas Day showed a large lesion in my parietal lobe. A full body MRI a couple of days later showed a 40mm brain tumour and also showed a large tumour on my right kidney plus a lesion/ metasis in my spine. It was thought/presumed by the doctors that the cancer had spread from the kidney to the brain however subsequent biopsies showed the kidney cancer and brain cancer to be two seperate primaries. What looked like cancer in the spine turned out to be hemangiomas.  

Treament wise like yourself I also had 90% removed surgically (classed as a near total, you probably know this already but you may hear people talking about total and near total resections) I finished my standard 6 wks chemo/radio mid April and I was lucky enough to have little side effects. I was however using hospital transport/taxis because where I am from in Cumbria is 1hr 30min to Preston hospital. Some of the people I was sharing a taxi with were really nausecious and ill looking,fortunately or unfortunately I was already a slaphead so that side of things didn't bother me. Talking to my consultant, nurses ane fellow patients there seems to be very much an element of luck involved with treatment side effects and how you look.

I am so glad your seizures are now under control? They are awful things. My son has epliepsey. He was diagnosed at Xmas in 2023 with a tectal plate glioma he was only 19yrs. He started with seizures when he was 15yrs which were blamed on brain damage from a lack of oxygen at his birth however eventually after a  second opinion of the latest MRI from early 2021 he was a diagnosed with a slow growing glioma. It is impossible to say if it is the glioma, pereinatal hypoxia at birth or a developmental condtion he also has 'dysgenesis of the corpus callosum' that casuses his epilepsey. Epliepsey/seizures are so shit.

I have also enquired about trials but I was told the UK ones are mainly at Christies or the Royal Marsden and that my kidney cancer would exclude me from most glioblastoma trials anyways. My consultant told me to use a company called MyTomorrows  to search for trials. They don't charge so presumably they must get a kickback from the drug companies etc? Take care x

That makes a lot of sense :) 

That is crazy how you found out and so unlucky :( cancer is fucking horrible xx 

Im glad you had no side effects, I’m praying I don’t but I’m the type of person to make the side effects happen psychologically haha. That is such a long way to go! Was the transport easily accessible? My hospital is a lot closer but I will be relying on other people to take me there. Did you decide to have no more treatment? 

Thank you :) yeh they are under control now. Omg really? So glad you got a 2nd opinion. It is so shit :( are his under control now? 

Oh okay interesting about clinical trials, it makes sense but unfortunate they are in London. I’ll have a look thank you for that. 

I really appreciate your responses thank you, it is so helpful. 

xx