Brain tumours

A place for people affected by brain tumours or brain cancer to support one another, ask questions, and share their experiences.

Glioblastoma grade 4 brain tumor

TFstar
Posted by

Hi there Jayne,

Sending you strength and best wishes up from middlesex!... Just got back from my mams.. was a good day, we went for coffee and a look around local shops... other than telling me I didn't need the loo - when I did!!... Things felt pretty "normal"

I hope you're doing well today.

kindest rgds,

Victoria

jaynehelen77
Posted by

Hiya Victoria

Glad you had a good day x today has been quiet been around to see mum and dad and they are staying strong and positive just waiting for the next hospital appointment Dad was on tea making duty so we didn't stop drinking tea all afternoon sending best wishes for more great days to come

Jayne x

TFstar
Posted by

Hi Jayne,

Glad to hear both your dad and mum are keeping positive and strong! This is a relief.. The waiting for hospital appointments I found difficult, have you been given a date or length of time when he will get to see someone? I'm finding the tea drinking will increase in frequency in these times!.. I hope you enjoy a cuppa!! Luckily I'm a big fan! :-) 

Victoria x

jaynehelen77
Posted by

Hiya Victoria 

We have been told we will be contacted next week for next meeting x 

Jayne 

TFstar
Posted by

Well that is positive!!

I'm glad things are moving for you!! When the hospital first found my mum had a tumour it felt like a long time before we got to see an oncologist. It may not necessarily be the case.. but I feel it was because they knew from the offset there would be limited options. I'm praying for you and your dad that you are seen soon and options are available for you. Please do let me know how it goes. As always my ears are open and my virtual shoulder is ready and waiting. 

big hugs,

Victoria x

May2009
Posted by

Hi all, 

Today my father was diagnosed with a grade 4 glioblastomas. I, in addition to the rest of my family are heart broken. 


Given his condition and position of the tumour they are unable to operate and can only prescribe steroids and radiotherapy to give us more time. 


Im not sure really what to write. Words cannot describe how I feel at the moment and the pain I feel for my father. 

Michael143
Posted by

I was in exactly the same position with my father 7 weeks ago. All I can say is that there are no words to describe the helplessness and sadness. The steroids and anti seizure drugs eased the symptoms for a short while. Joining the forums did help me understand more about the condition, treatments (or lack of) and the huge number that suffer the same.  

I hope any Radiotherapy can halt any deterioration for a good while. 


The Radiotherapy could not be administered as he was too weak. Unfortunately my father passed away on Tuesday. No consolation but he did not suffer long. 


My heart goes out to you and all your family. 



May2009
Posted by

Thank you. If anyone has any advice on how I can stay strong for my father and family at this time I'd appreciate it. 

Sel1974
Posted by

Hi may I'm not sure if I can help in anyway ..... my partner of 24 years was diagnosed with a brain tumour last January as of April it's now grade 3 ..... he's able to have it operated on fingers crossed .The only advice I can give you is from my own experience even a year and a half down the line it doesn't get easier you learn to cope be there for him laugh at things you both remember watch silly comedies(I've watched some dodgy comedies ) it works cuddle him tell him he's strong and that no matter what your there .... on a good day go for a walk reminisce , he may struggle with the diagnosis my partner even now struggles it's different for everybody I really hope there's something they can do my thoughts are with you in a tough and uncertain time xxxx

May2009
Posted by

Thank you. I think you're right - there will be good days and bad days. We had a visit today from a specialist and they said "laughter therapy" is always good. 

Chris17
Posted by

Hi May2009,

The same circumstances happened with my wife, aged 50, in November last year. We have three children (20, 18,17). My experience was initially total shock at the devastating news and I couldn't think straight for weeks. Needless to say our children's studies at school and university are also affected.


When I returned to work a colleague told me about a neighbour of hers who had been diagnosed with pancreatic cancer and had a very poor prognosis. I have since emailed this person - who is still here 3 years on- who gave me the encouragement to research further and consider alternative/ complementary/integrative treatments. This has given me some focus on trying to do whatever I can that may make a difference. 


We have gone down the line of getting treatment from a private clinic in London, with the full knowledge of my wife's oncologist and GP. I'm not sure if house rules prevent me passing on more details. Anyway this place has so many people contacting them who are patients at the Christie in Manchester that they are considering opening a clinic in the North West.


Is the treatment working? Who knows. What I do know is that in the future I don't want to look back and think about what I could have done for my wife, but on what I did do to give her more of a chance. This is part of my way of coping and I think it is helping.



Michael143
Posted by

In the 2 months from my dad's diagnosis to him passing away, we tried to savour every moment. Even held a small birthday party in the hospital ward he was in. Once you accept that there is nothing you can do medically, it was a case of smiling at him, supporting him and making him as comfortable as possible. 

Sad thing was that towards the end we wanted my pain to end as quickly and dignified as possible. 
May2009
Posted by

Chris17, who are you seeing in London? My dad is 70 years of age and they only recommended radiotherapy to help ease the symptoms and give us more time. Sadly, I don't think any other option is available to us. 

May2009
Posted by

Michael143, How did you maintain a balance without overwhelming your Dad? I can imagine it was at times a bit much for him having all the fuss? 

Chris17
Posted by

May

Research Care Oncology Clinic. They are doing some interesting things with repurposed drugs.


Also Chris Woollams' website is worth a look as well