We Talk Brain Tumours

Hi Pete. "This time last year" is also part of my thought process at least once a day. I'm still thinking 'this time last year' and finding a healthy happy Tony with no clue of what was about to hit. His symptoms began on 26th April 2011 so I've got a few months before I get to your stage. I suppose there will come a point when we will be saying 'It's been a year since they have gone'. Another milestone. Time waits for no man indeed. 

Hope you're staying strong.

Pam

x

Oh Kim, what a story. When I finished reading it the word 'relentless' came to mind. It does when you read many stories on this forum but I think it applies more to yours than most. 

The fact that you still have the physical energy to lift your hands onto a keyboard to type your story and the brain capacity to form a coherent sentence is, in itself, a mini miracle! I just want to sit you down, give you a massive hug, a cup of tea and let you get it all off your chest. It's what we all need sometimes and, despite their best intentions, friends and family are rarely the right people to do that with.

I think your desire to know what the future holds is the same for so many of us on here. Rather the shock and surprise while it's happening to somebody else than the shock and surprise of seeing it for the first time happening to the person you love. That makes complete sense. I also find that if I can anticipate what may happen next I can also prepare for it, do a little research to help me respond more quickly and reassure him or make him comfortable with any changes as quickly as possible. I found that Tony looked to me for strength and, if I panicked, he panicked. So being prepared meant that I was able to stay calm and keep him calm as things presented themselves.

Unfortunately, personality changes are so much a part of the brain tumour journey and they manifest themselves in so many different ways. I definitely wasn't prepared for this. Depression, obsession, aggression, all three or any other number of possibilities. And it's hard to know if the cause is the tumour, the drugs or just plain old emotional turmoil. Could be one or all three of these! So it's hard to know how to handle them. That's what I found to be honest and I'm still none the wiser. I did find that they eventually passed as so many of my lovely friends on here told me they would. 

So sorry that you are having such a harrowing time. Am glad you found us though.

Wishing you much strength and sending love and hugs.

Pam

x

Morning All

Mary. I hated our Consultant and everyone surrounding him. They felt so cold and clinical. At every opportunity they would say" Now you do know what this means? You do know that this will come back regardless?" You do know that no one out there will touch this tumour"   Yes we did know!! We only wanted a little infinitesimal spark of hope. After one of these conversations the Radiologist found me shaking outside the room and said "Its not all bad you know" I clung to these words like a drowning man for months. She meant nothing by them of course but to me it was that little "maybe?"

I found that, regardless of what was said, my poor husband kept that spark of hope. He liked the friends who talked about the future and who ran ragged investigating every option on the internet. I dont know if it was his way of coping or if he was protecting all of us. He also liked to have things planned. He always talked about when he got his mobility back ( he had had high hopes for physio), about the things we would do. The Bucket List . My feeling is that these are fit healthy men in their prime who on the whole have never had a days illness. They are convinced that it is like any other ailment that with a bit of effort  they will manage to become strong again.

 I managed to haul Mark to the home of his brother  in Italy 8 weeks before he died. It was not easy..he was totally immobile and  was very poorly when we were there but it was worth it for the morale boost. Plan your holiday Mary..you never know.

Kim and Jayne. The personailty changes as Pam says, are par for the course. Depending on the location of the tumour each has its own variations. My husbands tumour was right frontal and he became more child like( with varying obsessions), never violent or angry, devastatingly sleepy and no seizures until the last few weeks.  If it is any comfort to you, I worried that I would never remember the man that he was. and would only have memories of a confused steroid - bloated man  who had little empathy for others...but I dont. I picture the man I always loved, and these visions have departed with the Tumour.

Well... dont know about you Southerners but we in Scotland are going to do a bit of gardening under the blue skies in our T shirts. Global warming has something to be said for it!.

have a peaceful day all

Love Cathi xx

Hello all.  Today marks three months since Ali's passing.

This weekend, her parents are dropping by for a visit and to go through some of Ali's things that are sentimental to the family.  While going through some things, I came across her teacher training notes and a photo album that I've never seen before.  It was heartbreaking to see her so young and full of joy.

It's small things around that get to me, often uncovered as I move things around.  Yesterday, I opened a cupboard and found a bag full of her Hen Night things.  Things that any normal man would shudder to see.

Hi Pete. I was at 7 months yesterday. It is true...its the little things...the receipts in the pocket, the gym bag with everything from that last day, the glasses. the hair on the collar of the jacket. The simple everyday things that mattered in that past life. Hope it is not too difficult this weekend.

love Cathi x

Yes, Ali's last book is still on the bed side cabinet.

This weekend will be fine.  I still get on very well with the in-laws and we'll most probably spend a few hours just chatting over the memories.  We share the same gentle, reflective sorrow.  We also share the joy that Ali gave to our lives.

Cathi

I was so pleased to see your comment about remembering the man that he was. This b@st@rd cancer is so overwhelmingly cruel and relentless that the trauma involved makes me fearful that it is all I am going to remember of him. Our journey has been so traumatic with so many hurdles to overcome along with the cancer thinking about the past seems impossible right now. I hope very much, like you, I am able to put away these visions and remember the man that shared my life for over 30 years. 

Hope is such an important thing isn't it? We found that Tony's consultant would present information to Tony in a way that always left a little ray of hope for him, he would deliver even the worst results with sensitivity and a positive spin. He was very kind. However, he would always create the opportunity to speak to me separately and always told me exactly how it was in reality. I found this an extremely useful way to do things. Keeping Tony's hope going whilst being able to make decisions based on the reality of the situation was the absolutely best way to allow me to manage things I think. I have heard some terrible stories about abrupt and insensitive doctors and nurses and it makes me feel so grateful for the ones that dealt with Tony.

Well, Cathi I live near Portsmouth and you really can't get much further South unless you head down towards Cornwall and the skies are very overcast and it's freezing. So enjoy your gardening! We're still all stomping around in woolly scarves and hats down here!

Love to all.

Pam

x

Pam.  I find that my memories of Ali while she was ill are very few.  I think this is due to the fact that so many of them were the same as all the rest.  Of course, you've had far more activity in Tony's life after diagnosis, so things will doubtless be very different for you.  It's very likely, however, that your memories will be of the good times.  The times of endless waiting and vigils will fade into nothing.

Ali never (as far as I know) asked the doctors about her prognosis, and we didn't really bring it up in conversations with her.  We simply got on with things.

Guys

Julie has just bought a new laptop and the Macmillan site won't let her post anything. She has asked me to ask if anybody knows how she can fix it?

Cheers everyone.

Pam

x

Best idea is to email admin. They are usually very quick at getting back. Does she perhaps have new internet provider and might have to change her account?

Cxx