I feel lost and stuck

Hi Leonenko

a warm welcome to the group. Sorry to hear about you have been through and how its left you feeling.

I've been supporting my husband through his GBM4 journey since his diagnosis in Sept 2020. Unfortunately due to the impact of his tumour he had to step away from work at that time. HIs original tumour was in the area of the brain that controls speech, language and understanding. Once he'd recovered from his surgery and 6 weeks of treatment he did struggle with the fact he wasn't working. Work and his beloved car were two of the big things in his life and they were both gone. He threw himself into his fitness as way to cope. He's a marathon runner...or he was at that point. 

With regards to your job. have you spoken with your boss? Is  there perhaps something they can do to make work feel more meaningful?  If not are there any local groups you could become involved in perhaps even on a volunteer basis that might bring more meaning to things?

I'd love to know what normal is these days! My husband was diagnosed at the height of covid so life changed in March 2020 and between one thing and another will never be "normal" again. Normal is over rated though... life is for living so try to do things that make you feel alive. Do you have any hobbies? Do take part in any sports? These can be ways to engage with folk too.

With regards to folk not telling you their issues, they probably think they are doing the right thing by not sharing their own issues. I suspect its been done with the best of intentions and not to make you feel isolated. Have you tried telling folk how you feel? I have noticed over the past couple of years that some folk just don't know how to  interact with my husband and me to a lesser extent. That says more about them though than us in my book.

This community has been a great source of support for me personally over the past couple of years. There's another group you might want to check out too Glioblastoma multiforme brain tumour forum - Macmillan Online Community. There's always someone around to listen who gets it. You're not alone. We're here with 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.

The run up to scans has always been an emotive time in here- the time between the scan and the video call with the oncologist was worse- so I can empathise with where your head is at on that one. Take this all one step at a time. Focus on what you know and how you feel and not the what ifs. 

In our case, my husband was given a prognosis of 12-15 months in Sept 2020. He's still with us- albeit heading towards the end of this rollercoaster ride. As I mentioned, he's a fitness freak and last year he ran 2 marathons (Manchester and London) and in total ran over 2800 miles for the year. He went skiing to France. He had weekends away with his friends. He went to London to visit his former work colleagues. He even got the chance to be an extra on series 8 of Outlander. I guess what I'm trying to say is he has been living his life to the best of his abilities and at the end of the day, that's all any of us can do.

Hope this has helped a little.

Sending you a huge virtual hug. Stay strong. And I'll think positive thoughts for that scan next month.

love n hugs

Wee Me xx

Well said. We each face different prognoses, and must do what wwe can with what we have.

Hi Leonenko

My son has the same diagnosis, its not me , so second hand experience. I know that a polished answer is what everyone needs and takes the pressure away. Regurgitation is more simple. This journey has many false horizons, goal settings, sunshine and rain. Good days, bad days and an equilibria of numbness. 

If i have learned anything apart from the flotsom and jetsom of an uncontrollable journey decided by a bigger tidal force, that the sunset is brighter than it ever was

My Son and I have talked through so many things which are so difficult. We look in each others eyes with a clarity to which, I hope is the preserve of the few.  

Never give up, even though, the result can be set. Understand that people dont know how to be or react, what to say, how often to ask. We have to manage this, whilst not coping. Thats our strength , perhaps our secret, but definitely our  bastion of power when most of this has been taken.

Smile , thats our sunsine, big love to you. We are all behind you and for eachother 

• ️

What an incredible husband you have. His strength and situation gives me so much hope. Do you mind sharing more about how he managed the fitness side of things? My tumour is in my right temporal lobe. Have same worries about work. I would love to do some fitness as was very active before this started but at the moment I am experiencing symptoms. How did he rebuild his fitness? I have swelling on the brain so worried about additional pressure etc. Very early days for me though we just diagnosed following ED admission for dizziness and brain swelling. Helpful to think about the future though and something positive. Many thanks 

HI. I had partially replied on your other post.

Running has always been his key focus. After his surgery it took him a while to rebuild the fitness but when he couldn't run he would walk...miles and miles and miles. Running/fitness is his coping mechanism. Up until the start of February this year he was running over 50miles a week. When he can't run, he cycles. He has his road bike set up on a turbo trainer in the garage and he just sits out there, watches a film on the TV and pedals away.

It was probably about 6 or 8 weeks after his treatment finished (He had 6 weeks of oral chemo/radiotherapy) after his surgery that he really got back into running regularly. He gradually built up the mileage until he found a pattern where he would run 8 miles several times a week with 2 or 3 longer runs thrown. in. Last year he focused his training on the two marathons (Manchester in April - 3:15:18 then London in Oct -3:33:34)

Give yourself time to recover from the biopsy and anything else they do surgery/treatment wise then get those trainers on. Listen to your body and be guided by what you feel able/driven to do.

love n hugs

Wee Me xx

Hi.  I was first diagnosed with oesophogeal cancer in May 2021. With chemotherapy, I got through to December 2022 when I discovered a diagnosis of a brain tumour said to be on the point of being untreatable. It has been treated, but I am due for a review at the end of April.

I ran and swam for a long time. I am now 71, so I have not been fast, and over te last few months have virtually lost any ability to even walk at all (awaiting blue badge).

I am suffering continuing dizziness, and my walking such as it is is so slow as not to register on my Garmin.

I am therefore not in anything like the position described above. That leaves me to work from where I am.