Glioblastoma stage 4

HI Roseyasabud

A warm welcome to the online community. So sorry to hear about about all you've been through. You sound like a tough wee cookie.

My husband was diagnosed with GBM4 aged 51 in early Sept 2020. He was told without treatment he wouldn't see Christmas but with treatment he was initially given 12-18 months then that was shortened to 12-15 months. He  went through the 6 weeks of oral chemo/radiotherapy and coped really well with it all. He then decided that he didn't want any further treatment. A decision I have had to respect.  We're now almost 18 months down the line and physically he's still in great shape. He's a fitness freak and a marathon runner and still runs around 50-70 miles a week.  I appreciate everyone's situation with this diagnosis, in fact any diagnosis, is unique but I hope you can draw some comfort from his journey so far. His tumour was/is in Broca's Area of the brain so has impacted him mentally more than physically. He has issues with speech and language and is easily confused - a bit like someone with early stage dementia.

Emotionally, he has never been someone to open up. He did have a couple of meltdowns after his initial diagnosis but since then- nothing. Everyone reacts differently and there is no right or wrong way to feel/react. Not everyone cries. 

This group is really supportive as is Glioblastoma multiforme brain tumour - Macmillan Online Community (you might want to dip your toes into that one too). There's always someone around here to listen, someone who "gets it". Friends and family are great but they don't always understand. 

It’s always good to talk so do 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.

I hope some of this has been of help and perhaps even reassurance. If there's anything from  my husband's journey that you want to ask me about please ask. The unknown can be far scarier than the known.

For now, stay strong. Stay positive. I'm sending you a huge virtual hug.

love n hugs

Wee Me xx

Hello Wee Me 

Thanks for replying. I have 3 tumours in the left frontal lobe, they are sitting on my motor skills and speech area. I’m right handed so struggling with things when I get horrible sensations all down my right side. 
Oncology are concerned because I had bowel cancer 14 years ago due to a faulty genetic gene I have called Lynch Syndrome. I was left with a short gut and spent many times in hospital for nutrition reasons. I was admitted end of March to my local hospital and spent 3 months there then was transferred to Addenbrookes for 5 weeks to get Total Parentrel Nutrition at home. I connected up every night to give me fluids and calories. 
All my symptoms started about a year ago when my tongue was going into spasm and and had involuntarily movements in my arm. I had eeg in hospital in May and was advised to come off a tablet that can cause tongue spasms. Saw the neurologist in May and he said because of of increasing lung nodules I’ve got wanted an MRI. I didn’t get the MRI until 4th November. My local hospital didn’t refer me until 10th December then it was all quick. 
I was due a biopsy on 30th December but got covid so finally had it done on 28th January. Got the results a week later. 
The team are concerned because I can’t absorb anything in my gut because of the short gut and think the chemotherapy might not be successful so they could offer me Immunotherapy. We will have to see how my body reacts to the chemo. 
We are in just huge shock. We have a daughter who’s 30, she has 3 children aged, 10, 5 and 4 and our son in 23 with no children. My daughter told the youngest children at the weekend, that was heartbreaking. 
I suppose we’ve got lots of emotions etc to go through yet. I want to cry but can’t. I think I need to get all the important things done and out the way then it might all come flooding out, I hope so because I need to. 
That’s the story so far xxx

HI

telling your kids is tough. My son still stays at home so the day after his diagnosis I convinced my husband to break the news to him. He told him himself so I don't know what was said. We then had the dilemma, our son knew but our daughter didn't. They were 21 and 23 at the time. She'd left home less than 3 months earlier. Cue  one very emotional drive in torrential rain to her flat some 30 miles away later that day. I was wreck by the time we got there. I ran straight for her loo when we got to the flat and by the time I came out my husband had broken the news to her. She fell to bits. I can't imagine how you tell younger kids. My heart really does go out to you all.

Everyone deals with things in their own good time. You will show your emotions when the time is right. Mine have a nasty habit of sneaking up on me and then leaking down my cheeks. It's an emotional rollercoaster ride. 

love n hugs

Wee Me xx