We Talk Brain Tumours

Yes, Ali's funeral was very like a wedding, but just without the bride there.  It was so good to see people from all aspects of Ali's life.  There was no morbidity there, just good hearted chat and catching up.

Hello everyone, hope you're all doing as well as possible.
Been thinking of you Mrs SG and hoping everything is going as you want it too. We have a beautiful day here, hope you do too.

Nothing much happening here regarding my son, next scan not til May so we will continue to enjoy this  little piece of peace and quiet.
love to you all
Kathy xxxx 

Hello everyone, I hope that all is peaceful.

It struck me this evening that it's exactly a year since my wife and I walked into A&E together and walked headlong into this awful, but extraordinarily loving journey together.

If I knew what would happen before I met her, I would not have changed a thing.

Dear pete

its awful the dates and memories that come back to you isnt it. I remember now almost four years ago that I dropped my husband off for a pre op and I went to the dentist not realising that our life was going to change forever that day.

Its also my dads birthday today, he would have been 87 years of age today, he died 20 years ago on the 25th march. I have the most fantastic memories of a true gentleman.  I feel so sorry for my boys that they lost their dearest dad at the age of 58/59.

I have followed yours and Alis journey from almost day one as my best friends husband has a brain tumour. I dont always join in on the discussions but I check in almost every day to see you are all ok.

love jmd xxxx

Dear All,

It is several months since I last posted, but I have been following everyone's progress and my thoughts have never been far away from each and everyone one of you even though I have been silent on the site. I have laughed and cried as I have read your accounts, and have at least felt there are people who understand my feelings and experiences too.

I have just read Pete's post and it struck a cord. Yes, dreadful how all of this is, I would agree, I would not change anything, and somehow or other we will get through this...

Dave, my husband is still coping although since my last posting, he has been in hospital for lengthy stays and is currently in a nursing home. I am visiting twice a day and although I am sure they are doing their best, it is not ideal by a long chalk. I have been off work for several months and will need to make some very difficult and major decisions regarding either returning or looking at early retirement, I am 56. I have a meeting at work on Friday, so will know more about the options.

I am leaning towards retiring, if this is possible, and the finances add up, and getting Dave back home, as I do not feel happy about the current arrangements, and I think he wants to come home too. I have been told by many of the professionals involved that trying to provide for Dave at home would be very difficult and stressful, but so is the current situation, it is difficult to find any peace of mind or concentrate on anything and I feel drained and tired most of the time. I cannot see in some respects that it can be worse than what is happening now.

In addition, my parents are 89 and 83 and I know that at some point they will need additional support so I need to consider this too. I am their only child, so I really need to think about the best way forward...

Best wishes to everyone.

Elaine B.K.

Pete

It was the day of William and Kate's wedding when Tony first fell over and realised he was losing the use of his left arm and leg. That was the last night we slept in the same bed, the last time we did anything that wasn't overshadowed by cancer, the last 'normal' day of our life together. He went into hospital the next day and never came out until June when he was in a wheelchair.

I should imagine that every Royal Wedding anniversary will remind me of that time. Every time I see a picture of Wills and Kate kissing on the balcony I think of that day when I struggled to pick Tony off the floor and put him in a chair little suspecting of what was to happen next. I think I know a little of how you might be feeling.

I hope in time I am able to look at that day and think of nice things. I suspect not.

With much love to all.

Pam

x

Pete,

That was a beautiful post in a strange way. To know that you wouldn't have done anything differently, even if you'd known what was coming, is so touching.

A year ago yesterday we were told dad's latest MRI showed no further growth and he was in partial remission. I turned round in the school playground and there he was with mum, on his crutches. It was the last time he ever came to meet the girls and they loved it. He pushed Herbie's pram back for the last time. We were so happy that day even though we hadn't been told the tumour had shrunk or disappeared or anything. Funny how you find the positive in anything at such a dark time.

Naomi xx

*Walking sticks, not crutches!!!! If only it had been something like a broken leg!

Elaine - I'm sorry to hear of your current situation. I can think of no useful advice except to follow your heart and your intuition. If giving up work is what you feel is best for you and Dave and it is financially viable then I would urge you to do so. It is important to have no regrets later on and to know that you did everything the way you both wanted it to be done. Thinking of you.xx

Naomi xx

Pam,

I know what you mean, but try and think of it like this.

The date of the Royal wedding was the day that your love for Tony started growing more deeply that you'd have ever thought before.

I know that none of us want to be here, but this experience gives us an understanding of life, love, and compassion that we would have never known before.  No "normal" people have our insight.

And, you have new friends now...

Message for all WTBT travellers, whether you be regular posters, those who just read, and those who feel unable to post at this time.

Joanna and I have been having a bit of a chat and we'd both like to organise some kind of a social event where we can all get together and share food, chat, and maybe a couple of bottles of wine in each other's company.

We don't have any firm details yet, but the basics are:-

* This is not a formal support group or a fundraising event, it's purely a social event where we can share experiences and generally spend some time with each other.

* Most probably this will be at a reasonably priced hotel.  We don't know where yet, but it'll depend on how where people are located

* Likely to be June/July (Joanna is out of the country in May and Pam is away with the fairies for a couple of weeks in June).

Interested people so far are:-

Myself
Joanna
Pam

So, if you want to join in, please let me know.  Ideally by sending me a private message here with your email address so we can organise details.