Hi,

Thank you for your kind replies. The neurosurgeon mentioned two years, but that appears very optimistic given what I'm reading here and elsewhere. My wife is only 52 and has reacted quite well to the biopsy surgery, so maybe that played a part in his estimation. The tumour is inoperable and we've been offered radiotherapy and chemotherapy. Looking into changing to a private oncologist who offers stereotactic radiosurgery, but the whole area is impossible to decipher, in terms of who's offering the most effective treatment..etc. My wife is very good at the moment, very much herself and very independent. Just hoping it'll stay that way for as long as possible. Treatment is due to start in about 4 weeks I believe. Not sure if this is due to her requiring time to recover from biopsy surgery or it's just a waiting list issue? How soon did people begin treatment after surgery/biopsy previously? And any info on effective clinical trials would be very welcome. Too heartbroken for words at this stage. Thanks for your kindness in taking the time to reply.

Thanks for your helpful reply. I'm fairly petrified by what's in store. No doubt I'll have plenty of questions as things progress. I hope you have lots more good days ahead and wish you strength.

Kind Regards

Please always ask it's the only way to deal with it. It's so hard to watch people we love in pain and as lots of people say it's like walking on egg shells. Remember you are not alone x

It's heart breaking to read your stories but like you say good to share them on this forum x

my husband started his 3rd round of pcv chemo today he has responded well to it so far and hasn't had too many side affects.

it's as though his body seems to cope ok with the chemo but doesn't have any affect on the tumour .. he was only off chemo less than 6 months before it started to spread. I feel very pessimistic about it all, I'm trying to be positive on the outside but inside it feels like I'm going through torture. Every morning I wake and I listen for him breathing ... I hate what this disease is doing to him and to our 3 kids,

my husband has become incredibly irrational which I know is down to his tumour but it's so hard to understand especially for our kids

vent over.. I struggle to talk about this out loud so feel sharing on here gives me a release 

Oh my heart goes out to you - I wish I could do or say something to help but I cant.   Just things are improving all the time eg the chemo and keep as healthy as you can and sure will prove them wrong as they often dont get it right. 

Hi, my husband was diagnosed on the 21st,June 2020 with a grade four glioblastoma and he passed away on September 9th 2020 eleven weeks from diagnosis, we looked after him at home and we were all with him when he passed, he was such a fit man and to see how he went down so quickly was heartbreaking, it's a terrible illness and I hope one day there will be a cure.Take care and always have hope.xx

Hi Judy,

A very warm welcome to the forum. I am so sorry to hear that you lost your husband to this dreadful disease in such a short timeframe. You did well to keep him at home until the end and I am sure that it was a great comfort to him and your family that you could all be with him when he passed.

I lost my father-in-law 2 years ago, within just 5 days of diagnosis and know just how devastating this is. Diagnosis, treatment and aftercare have all made great strides in recent years and I do hope that one day a cure will be found.

I hope that you are coping and that you are receiving the help and support that you need from family and friends.

Kind regards,

Jolamine xx

Hi, Jolamine

Thank you, I thought my husbands time frame was quick but 5days that must have been awful for you all, yes I hope that in the future there is more money allocated to brain tumours to help research so that there is more done to save people from going through this horrible illness.

I am taking each day as it comes, it is getting easier and I do have family close by and I also have a dog that gets me out every day. Take care.

regards

Judy x

Hi Judy,

Yes it was difficult to accept that he left us so quickly. We took him to see his GP on 5 occasions before this and were told that it was 'just arthritis'.  He was 97 at the time. However, on the sixth occasion, the doctor we saw suggested that he should go to the day hospital for assessment. We were given the prognosis within 2 hours.

I am glad to hear that you have your family nearby and that you are managing to get out with your dog every day. Please remember that we are always here if ever you need us.

Kind regards,
Jolamine xx