We Talk Brain Tumours

Ah dear Pam,

I know that you've been expecting this outcome, but I'm sure it was a bombshell when you heard the words...

I think in many ways, this will be an easier journey for you from the one you've had before.  You're no longer chasing treatment plans, hoping, wondering, stressing over whether things are working or not, waiting for test results, etc.

From this time forward, you will develop a depth of love for Tony that you've never experienced before, and it will be beautiful, despite everything.

Your grieving process starts here, and for me it was easier to do it this way, together and sharing my love while Ali slowly drifted away.

Hopefully, this stage will be as peaceful for you all as it was for Ali and I.

Just an additional observation with regards to people's responses to this situation.

When I first got pregnant all of those many moons ago I noticed that other Mums could not wait to tell me how painful childbirth was. They couldn't resist the opportunity to talk me through the gory details of their own experiences and the horror involved. It was very unnerving and diminished my enjoyment of the pregnancy a tad.

There is a strong sense of schadenfreude about they way they tell you too. Or maybe I'm just paranoid.

I am noticing something similar amongst some with regards to how I am going to cope once Tony has passed. I am quite surprised by the amount of times I have heard 'Well you're coping now but of course you'll fall apart afterwards. I even got this from my sister and my best friend - who got both barrels I might add.

Is this true? Is it a given that I am going to fall apart? And what does falling apart entail? Is it something I can prepare for? Stock up on tea bags or make a few advance payments to the electricity people so I don't get cut off while I'm falling apart?  Martyn, you haven't, Naomi didn't. Neither has Pete. I don't believe that people would put a brave face on things on this forum, this is where we get the truth. And none of you seem to be falling apart.

Just my rambly thoughts. Wondered what any of you think?

Pam

x

So sorry Pam...but sometimes we find relief in that we are  no longer in that frantic state of feeling we are letting our loved ones down by not finding answers and cures. I hated our Oncologist with all my heart because I felt he was putting obstacles in our way and thwarting plans for all kinds of treatments world-wide that we had heard of. It was only later that I realised that he knew what we did not....that nothing would make a difference in our particular case.

You have also realised earlier than I did, that death is not to be feared...it is the uncertainty and the lead up to it that causes the anguish. Its the sadness that you are losing the person you love. You should go to Switzerland if Tony is at all capable( we did Italy 8 weeks before Marks death) and maybe investigate a short term lease in a racehorse?( with us it was top of the range porsche) . Why not? Tony is trying to fill the bucket list quickly. I am so glad that things have become peaceful and you can be with the man he was, before this bugger of a disease. Thats the Tony you will remember.

Like Pete....I wish you a dignified and pain-free journey through the train. At this stage it is what we all hope for....We will all be  with you on your journey.

Love Cathi xx

Pam....just caught your last post.

No ...you wont fall apart. This journey is so grim that anyone who is going to fall apart would do it much earlier. You cope with the illness and you then cope with the life after. There is a sense of relief that it is over( I feel terrible saying that...but its true)....but then you pick yourself up and get on with life. Its a different life with a huge lonely space next to you but its life all the same. I remember my GP with tears in his eyes saying "You are coping so  amazingly well with this terrible illness"...and I remember thinking ...."What else can I do??.... 

Most of us on the Forum are pretty strong people...... think thats why we have found comfort in one another. Thats not to say we dont have our dark moments....but they dont last long.

Cxx

Hi Pam,

I didn't lose my partner, I lost my mum three months ago to GBM so maybe I am not qualified to reply but I am still waiting to fall apart and although I have had moments when I sob in a heap, it hasn't come.   I nursed my mum all through the discovery to end which was only four short months, she was very young and it was such a shock but I dunno, you get the time to say and do things, spend so much time together and although you maybe wish you had done the odd thing, you have time to come to terms with it and I dunno, feel at peace with it.  Sure there are angry times when you think 'why us' but then you look around and see the young children with this monster.  I honestly believe it gives you a whole new strength you never knew was inside you, shows you such care and compassion in yourself and others and you will amaze yourself with your love and strength.

People asked at Christmas how we were every day and when we said we were okay and it was going well (we lost my father in law suddenly a few months before) they look at you as if you can't be, as if you are hiding from them, they maybe look disappointed when you don't break down on them - I dunno!  As Pete says, I think everyone must start grieving from the start or maybe when things worsen.

Pam - your posts remind me of Debs with the witty comments - you already sound very strong and bright, keep going, everyone on here will boost your strength when you need it.

Joanna was thinking about you yesterday, just couldn't get on here, I hope the day went as you wished x

Pete & Martyn - hope you are both okay

Love to Naomi, Cathi, Ange - hope this is a better year for everyone.

Love & strength to all the newbies - this is the only train you want to be on, it gets you through your journey very gently

Apologies if I have missed anyone - when I try to go back on the pages it bins me out and I have missed so much

Sharron

Thank you everyone for you good wishes.  The wind seemed to calm, the rain stopped and the sun came out, guess it is true dads can make anything happen!  The day went well although it was quiet, different from Paul's very busy and well attended funeral.   We celebrated dads life as we wanted to.  My son was very close to his grandad and has now lost dad and grandad in such a short space of time but he seems to be OK, he is back to University on Tuesday.

Pam so sorry to hear you news.  As Pete has said its amazing how close you become, even closer than you ever felt possible.  I started my grieving with the diagnosis and as cathi says, you will get black periods but you will get through them, I don't know of anyone who has fallen apart - grieved and continued yes of course but not fallen apart.

There are lots of clinical trials ongoing for BT, some are not being done in the UK but if they show improvement then the drug will be made available here.  Its very slow work but it is happening

Love to everyone and you newbies - ask for help now, whether you need it or not, it takes time to put into place so be prepared..

Joanna xx

Joanna, I am glad Dad got a peaceful send off and hope that both you and your son find peace in your hearts too.

Sharron, oh dear Pam & Debs - two of us with the same warped sense of humour, will the train cope.....do you think we should be separated and made to travel in different carriages so as not to cause too much mayhem??? Suggestions please :)

Pam, what can I say, you have the news that all us dread, no further treatment.......I begin to think I am going to get told that at every MRI, talk about paranoid!  I suffer terribly from 'scanxiety' and whereas normally I use humour to get me through most things, that lead up to the scan (and the wait for results) is one I really struggle to maintain an even keel.  I am like a caged animal being poked with a stick!  All teeth and snarls, quite a pretty picture dontcha think!!!!!!

I belong to a few yahoo bt groups but they mostly US based, however.... the Novocure  trial is going great guns although takes A LOT of willpower to wear a funny cap thing with leads attached to a battery pack day in day out.  But who knows, this could be the one!

Waving to all the other passengers (for fear of forgetting someone).

Much love & strength to all who want or need it xxx

Hi all,

Joanna, I'm so glad that things went as well as they could. I wish you and your son strength and happiness. x

Pam. So sorry to hear that treatment has stopped but it's great that things are now calm and loving, this is what you will remember. I feel that I was closer to falling apart when G was here than I have been since he left, however, I did not expect it to hit me so hard because I felt that I had been prepared for so long. I remember the children's councellor asking our daughter how she would feel when her dad died (this was about two weeks before) and Anna said, 'I don't think I'll feel any worse because it's like hes already gone.' I remember thinking that she would be in for a shock and we both were. Anna put it into words simply when she said, 'I just want to hug him and it hurts so much knowing that I will never be able to ever again.' Anyway, we have survived a tough Christmas without falling apart and are now back at work and school, both feeling much stronger than we did last month. (hope all that made sense!)

Welcome, to all newcomers. So sad that you are here but glad you found us.

Ange x

Ange, I find children have a knack for saying things we feel,  without the need for complicated language, its like they speak straight from their heart.  I am glad you got through your first Christmas, lots of firsts to get through this year but I am sure you will be gaining strength and G's memories will begin to make you smile more than cry or hurt, at least I hope this is the case.  Good luck at work and to Anna for school.  I hope you are both being supported well.

Love & Strength to all who want or need it xxx

Hi Nikla, I'm so sorry to hear of your husband's diagnosis. It's truly devastating. He's so lucky to have you fighting his corner and supporting him. I hope someone is looking after you too? We can provide you with the reassurance you need, and the wherewithal that he is on the best treatment pathway. You can email me at meg@brainstrust.org.uk and I can get a brainstrust brain box in the post to you - it has lots of information in it including a brilliant book, that will help you understand things better. You can email me your address. And have a look at our website www.brainstrust.org.uk  With regard to clinical trials we have a list of UK ones here http://braintumourhub.org.uk/index-new.php?tab=clinical to give you an idea. Thinking of you xx

Posted by PeteBennett on

5 Jan 2012 6:42 PM

On a lighter note, I got a letter from Sue Ryder today which made me laugh out loud (and sums up my experience with them)

It says:-

"It is now some weeks since your bereavement and we are thinking of you.

We enclose a leaflet about bereavement, which we hope you will find helpful at this difficult time".

The said leaflet is a single sheet of A4 paper, printed on both sides, basically telling me how I should be feeling (most of it pretty negative).

So yes, palliative care seems to end abruptly upon the death of the patient.

Every day, I am thankful for WTBT for my sanity and emotional well-being.