Living with a brain tumour

[DitheringDolly]

DH, early 50s, has been diagnosed with and treated for a brain tumour. It’s not possible
to remove it but with radiotherapy and chemo, we have been told his prognosis is good and he should survive for a good number of years.

I guess what I would like to know from other people who have a tumour themselves or have family or friends with one, is some idea of what living with this tumour could mean - within a range from normality to a restricted life.

So specifically, living with risk of seizures, independence, ability to work at a senior level, cognitive changes, exercise and sport.

And any other advice as we embark on this unexpected phase of our life.

Thank you

My husband was diagnosed with a low grade astrocytoma in 2000. He had focal seizures over several years, initially several times a day then they settled down after he had radiotherapy 2 years in.
I will do a quick timeline. It's a very honest one

2000 diagnosed. Went back to work as a lawyer. No driving due to seizures. Cognitively well
2002 slight impairments of cognitive function. Tumour growing. Had 6 weeks radiotherapy. Stopped the seizures and was well but unable to work at the higher cognitive level needed for law so stopped work. Fortunately had good health insurance policy that paid income if unfit to do "any" job. Really quite well. Did all childcare for me and the washing and ironing. Went to art and German classes to keep himself occupied.
2006 increased headaches drowsy. Tumour had progressed to grade 4 in centre if brain. Given stereotactic radiotherapy that helped. Much better for a year
2007 memory problems...given chemo therapy. After that main problems were mental slowing and memory problems and a disinterest in things. His tumour was frontal lobe which probably caused this as a friend at the time who had a temporal lobe tumour was much more interested in life.

2012 he sadly deteriorated and died so 12 years
It was a tough time and each stage became a new normal. My kids were 16 and 18 when he died so lived with it all his life. PM me if you want to know more. It's my birthday today so may be delayed in replying. Wishing you well.

Thank you Musicaltheatremum. That must have been so tough for you all and I am so sorry for your loss.

I really appreciate your honesty - that it what I need to help us plan for the future.

I wish you and your family well

Yes a bit worried it was too honest. But my children saw the benefits of having a father at home rather than working 14 hour days which he had been before his diagnosis.
Plan to do a lot
People will ask you lots of questions and will ask how he is all the time. I would say "how are you?" As the partner goes through awful changes and acceptance of the "new life" too. You will adapt. People will ask how can you cope and you will say that you have no option but to cope. Life goes on and you can wallow in the sadness and worry of it all or you can decide to look for any silver linings. Of course it's natural to be sad and I think coping with other people's reactions was harder than dealing with my own feelings.

My mum is very ill just now and I'm feeling the same way again but I have the knowledge that I will cope and get through it. I married again recently and life otherwise us very good.

No, that was so helpful and you sound
inspirational .
I am glad that you have been able to rebuild your life but tough that life is throwing further challenges at you.

Thank you so much for taking the time to reply to me - especially on your birthday

Hugs for both of you.

Dh did some early research in MRI on the brain. (he was looking at technique rather than actual people generally)

One thing that did surprise the researchers is the size of tumours that could grow in the brain with no effect at all at any point. I think he said size of an orange in one person which would never had been known if it hadn't been for scans.

Effects depends if I remember rightly on a few things.
Where it's growing (and which bit of the brain it presses on), how fast it's growing and if it was a primary or secondary growth were important.

Hope you get some answers and they're good ones.

Yes, MT, I had heard that before and certainly we have been told DH’s will have been there for some time.
A very strange thought, isn’t it?