We Talk Brain Tumours

Elaine so sorry to hear your sad news (((((((hugs)))))))  Julie xx

Elaine, 

So sorry to hear about Dave.  Sending love and strength

Joanna xxx

So sorry Elaine. Dave is free at last from this grim disease. Wishing you strength for the days ahead.

Cathi xx

Saw a quote  about bereavement yesterday, on way back from a girly holiday which touched a nerve.

"We have lots of people to do things with...but no one to do nothing with"

Cx

Just wanted to send love & strength to Elaine and to Dave, peace be the journey.

Hello all,

I have not posted for over a month now but have been dropping in recently to read about how everyone is doing. This group continues to be the best source of real information about life with a GBM than any other I have found - and could teach the medical profession a thing or two about compassion!

I am sorry to hear of all those who have lost loved ones. I send my love to you all.

I wanted to drop by today to share Dad's experience of Radiotherapy and TMZ now we are in our fifth week. We were told that Dad's symptoms would like get worse throughout and that we should be prepared for a rough period - in fact the opposite has happened. Each week Dad has gone from strength to strength, his mental capability has improved, dysphasia is only minor and he smiles and laughs now as much as he did before this horrendous tumour appeared.

There are as to be expected some side effects, he has lost his lovely locks. He has trouble sleeping because the TMZ keeps him awake. His OCD (something that came with the Tumour) on timeliness has driven the hospital staff to distraction (the poor Radiographer looks stressed every time dad tells him he takes his tablet early so they have to be on time at the hospital!)- but every day he is a bit better.

We saw the Oncologist and MacMillan nurse today who both have said he is doing " remarkably well" and they are "amazed" at how strong and well he is.

I have no idea if this is a good sign or not, but it is giving Dad hope. Something he has been missing since February. That small glimmer of hope has grown each day and now he says "12 months - no way; not ready to go" with a big defiant Ed grin on his face....

I wanted to share Dad's journey as a little note of positivity and hope. It was he who wanted to share his story -  to say to anyone who is about to start this journey that it can surprise you,  and life can still include a glass of wine and walk into town even when you are in his words "being blasted and drugged"...

With love and hope, Victoria x

Firstly to Elaine, thinking of you at this moment in time, so sorry to hear about Dave.

Victoria, I am so glad that your father is having a positive journey. As Debs says 'We are not statistics, we are individuals' and each journey is different for everyone. May your dad continue to have positive experience with his treatment and continue to battle this diease. Hope is what pushes you on and never ever give up hoping.

Julie, regarding high blood sugars, Steve was type 2 diabetic before his tumour. he is now on insulin. Like Pete did with Ali, I still let him have what he fancies in moderation. His diabetic nurse says it doesn't do any harm! 18 is a little bit on the upside but I wouldn't panic about it too much if they are aware of it. Meds can manage it.

despite that fact that Hubs has had a second resection- he managed to stay clear for 19 months, he could sniff his driving license in the distance.....and then back it came. Anyhow he had the second lot of surgery 10 days ago. Saw the oncologist yesterday and he begins PCV in a couple of weeks. Most of the tumour has been resected he just has a little bit left which we hope the chemo will do the trick. Steve is very matter of fact about it. We just carry on living day to day. We have got our holiday in August we are hoping to go to in Scotland, as well as booking 3 concerts and 1 theatre visit throughout the year!  he's still got the word muddling, is unable to read or write, and is very slow walking at the moment but he's plodding along there.

Love to you and  all take care each and everyone of you.

Hello to everyone

I hope you don't mind me dropping in, I have been reading your posts over the last couple of months and have been trying to find the courage to tell you our story.

It began whilst we were on holiday in Spain celebrating our eldest daughter Hannah- 21st birthday, last August.  My husband nearly drowned on the beach and had to be resuscitated, he recovered and we came home not knowing why this had happened, thought he would just need a week off work to recover.  Little did we know what was in store for us. 

Five days after we got home we were back in A&E as Doug had a fixed dilated (R) pupil, CT scan and MRI were done where they saw a mass, This was diagnosed as a stroke, after 10 days in hospital and loads of tests, due to the near drowning . Discharged.

August Bank Holiday, Doug was re-admitted to hospital after a most traumatic seizure, his 1st, another MRI was done, spent another five days and discharged on his 50th Birthday, telling us that the mass had got slightly larger, but still saying it was due to a stroke,

Things deteriorated over the next couple of weeks, having right sided weakness, starting in his leg and then gradually his arm until he couldn't sign his own name, dysphasia was distressing him to. We completed ongoing tests as an outpatient and because of  a continual deterioration I contacted the hospital to see when he would be seen by the consultant, we were told not before the end of November. I told the secretary that at this rate Doug would of been dead by then. 

On the 3rd October Doug broke down in tears, I offered to take him back to A&E as things were just getting worse.  He was re-admitted more tests and assessments were carried out and on 7th October we were told it was a Brain Tumour, in some ways it was a relief to have a diagnosis at least we had an idea what we were dealing with.

A week later Doug was admitted to Plymouth Hospital for a biopsy, this is all they could do because of the position of it,  GBM grade iv was diagnosed.  Prognosis3 months without treatment, 12months give or take with treatment. This was devastating news, I don't know how we drove home.

Six weeks of treatment was started, Radiotherapy and TMZ, which went well, though TMZ had to be stopped after 4 weeks because of his platelets which plummeted. It was completed on the 23rd December, with some good results as Doug regained use of his (R) arm and speech improved slightly.

We have been having some good quality family time together, though as you have all stated the mood swings can be somewhat difficult to contend with. We have spent 2 weeks in Scotland, and last week we were in London and Paris.  We are making the most of what time we have together, even with Doug's limited mobility, has to use a wheelchair when out and about.

Had a repeat MRI on 19th March and saw oncologist on 23rd who told us that the tumours were stable and that  this was good.  We continue to make short term plans and enjoy time with our family and friends who have been a tremendous support.  We are celebrating our silver wedding anniversary with a party in a few weeks time.

Sorry I have been rambling on, I knew once I got started...

Best wishes to you all

Sue

Sue, so sorry that you've had to join us, but we'll do whatever we can to help and support you.

It looks as though the treatment is doing it's job and giving you a little more time together.

Whatever you need to ask, please ask.  If you need to rant, we all understand.