Hello
My partner has recently be diagnosed with a brain tumour and a biopsy has been taken, with the results being know next week. Prior to the biopsy she had a scan and I have been told that her condition is terminal and that she is likely to have just a few months.
she is already having difficulty walking and her memory is suddenly poor, with a personality change from happy and kind, to argumentative and snappy.
My question is how quickly will her condition deteriorate and what can I expect and when and how quickly will she become bed-ridden.
I have currently been told nothing by the hospital, nor do I have an appointment for her, having just been allowed to bring her home for Christmas.
Any help and guidance will be appreciated. Thank you.
Awful, shocking news I’m sorry for you
“Every case is different - enjoy each day” etc
Platitudes you’ll often hear I know, but some advice & truth in there? - Try to enjoy this Christmas Day 
Hi IpswichBlue
apologies for the delay in replying to your post. A warm welcome to the group and I am so sorry to hear about your partner.
The what to expect is the million dollar question here and a lot of the answer depends on what the treatment plan is for your partner, what type of tumour it is, where in the brain it is. Everyone in this tragic cruel situation is uncertain as to what to expect- myself included.
My husband was diagnosed with a terminal brain tumour in early Sept 2020 ( GBM4). His neurosurgeon skipped the biopsy phase based on the CT/MRI images, told us from the outset that he was 99% certain it was a glioblastoma and painted a bleak picture saying he had 12-18 months. His tumour is in the area of the brain that controls speech, language and understanding so there's been no physical issues...yet.
Post surgery, we were told he had 12-15 months. Surgery itself made some of the symptoms worse for a while. He had a seizure 2 days before surgery and to be honest, the man I knew pretty much disappeared in those few traumatic minutes.
He underwent 6 weeks of oral chemo/radiotherapy in Oct/Nov 2020 then declined the offer of 6 months of further oral chemo.
One of my biggest frustrations has been lack of clarity and consistency from his medical team so if I can offer one piece of advice its to question, question, question until you are comfortable you understand the whole picture. I feel pretty much abandoned by the NHS in our situation and would hate to think anyone else has been left floundering in this way. He excluded me from initial weekly appointments with his CNS, lied to both of us, got caught out lying (I'd love to blame the tumour for this but he's always been a control freak so in reality it was a combination of both) and in short, it impacted my relationship with the medical team.
Early last year, we got a letter that we needed for his employer's that said he had a "few short months". That I have come to realise is the current NHS buzz phrase . Personally I think its their way of saying "we don't really know".
So where are we at just now, one month past his "sell-by date"? Well he's doing ok. Physically he's still in great shape. He's lost about a stone or so in weight. He's a fitness freak and a marathon runner and so far this year has run more than 2250 miles. I have no idea how he's done it but its all he has left of his old life and its his coping mechanism. Mentally, he's slipping. He forgets words, can only follow simple instructions, can barely read - all similar to early stage dementia. Mood wise he's up and down. He's snappy at times but usually with me rather than our kids (21 and 24).
And that's pretty much where we are at. The last time we spoke to the oncologist was late October. When I asked what to watch out for, he said "Sickness, headaches and seizures." No Sh*t Sherlock - I've been watching for those for a year! I'm hoping for a clearer picture when we speak to him again mid-January.
I hope some of this has helped a bit. It's a tough rollercoaster ride for all involved and not knowing is a thousand times worse than knowing to cope with - even when you don't like the "known" bit.
This group has been a great source of support to me. Friends and family are great but they don't always "get it". Here, sadly, everyone gets it but there's always someone around to listen, offer some words of wisdom and a virtual hug when its needed, It’s always good to talk so remember 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.
To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section.
In all of this emotional whirlwind, please make sure you take time to look after yourself. It's not being selfish, its essential to help you help your partner through this. So take that hour to go to the gym, or ten minutes to read a book/listen to music and enjoy your coffee. Even a short walk round the block can help. Take each day as it comes. On the tough day, break the day down into sections and take them one at time.
Sending you a huge virtual hug. Stay strong. Stay positive. Stay safe.
love n hugs
Wee me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
