We Talk Brain Tumours

Typically from Mandy that is an articulate and compassionate post. Although I'm sure I am probably more the target of Martyn's post than she - but I couldn't have said things better.

I also strongly don't feel that this sort of discussion belongs on a thread on this site and I also won't easily go far into this discussion nor will I defend myself as I don't feel I should need to. If others disagree with that then I'm sorry.

I have never, ever set out to cause offence or hurt or upset. I hoped to give and receive support through the hardest times of our lives.
But. as in real life, people's needs and situations change and often a friendship or support group can simply lose the intensity; it doesn't make it any the less valuable for that.

I wish everyone who writes or reads here well.
CH

I too feel wrong for replying but just felt there is something I want to say. I know I am not a regular poster but the support and comfort I have had from this and the other thread have been huge. Even just reading and knowing you're not alone helps. I was living on the other side of the world when my dad was diagnosed and this felt like a place I had to return to again and again. I remember the banter etc before the site changed and even though I wasn't part of it I could see how valuable that was to people. I do not understand at all what has gone on to cause upset here but it is so true that people's needs and feeling change so much at different stages of this journey. Since my Dad has died I feel much less like coming here and posting even though I do still read. I find it too hard to read of others in different stages of this journey when I know what the end felt like for us. It is still too painful and raw and I completely understand others having similar feelings. At the end of the day everyone here is going through their own personal nightmare. None of us should have to experience what even a  day of this is like but here we are. Don't forget that everyone on here is having an awful time. I think it's very sad that this is going on while we all know what everyone is going through. As I say I don't at all understand what has caused problems and so I'm very sorry for sticking my nose in. I do know how valued everyone on this thread is though and how welcoming Martyn always is to new posters when things are quiet here. I think it is sad for anyone to leave. I wish you all well and hope that Doreen is doing well.

Rona 

Sorry for the hurt that I have caused, particularly to Mandy.  I am certainly not going to reveal the details of a private telephone conversation between us.

This really is my final post and I wish every single one of you and your loved ones the very best for the future.  Martyn XXXX

PS,  CH, right as always.

AFTER ALL WE HAVE BEEN THROUGH TOGETHER AND STILL WHAT SOME OF US HAVE TO FACE IS LIFE NOT A BIT TOO SHORT FOR ALL OF THIS!!!!!!!!!!!!!

As I said I don't post now as my life is different but I am always there for anyone at anytime and poor Mandy has been through so much with the death of her husband and the worry of her daughter sometimes we don't always mention everyone as I said earlier I posted about my mum's funeral thought I would get a reply but didn't but I would never ever hold a grudge as when I seen what my lovely Mum went thru at just the age of 55 I believe that life is now for living.

LORRAINE

Normal 0 false false false EN-GB X-NONE X-NONE

Martyn, you, me and Ann go back further than anyone else posting at this time.  You and I are unique because our loved ones don’t have GBM and our journey is much longer than almost all others.  I once tried to count how many people you helped on the train and later bid farewell when their journey came to end and a new, equally sad journey began.  I lost track after 140. 

Each time we waved goodbye to someone who’d become a friend and comrade at arms, we suffered a loss.  There were times I couldn’t handle the ongoing loss and had to take a break for a while.  You never did, Martyn.  You kept soldiering on, formidable in your determination not to abandon the rest of the passengers on the BT train.  I sometimes wondered, ‘who will be there for Martin when his train journey comes to an end?” 

Well Martin I for one will be there.  If anyone has reason to stay on the train with you it’s me because my journey with BT continues, unlike the very dear people who have come to the end of their journey and moved into a different era in their lives.  Please say you will stay until your journey reaches its end.

Jill

Jill, I've promised myself I won't reply to this anymore because this sort of public spat is so painful and unfair for all concerned and no good ever comes of it.

But as she is away for a while I feel I must just say that for example Mandy's husband didn't have GBM. P had a non-malignant tumour and an unsucessful operation resulted in P's paralysis and aphasia. I think it was over 6 years ago. Other long time posters' loved ones similarly don't have GBM - which in itself can go on for 3 years or more. For myself I would gladly have cared for my partner for another 50 years.

Also, the journey doesn't stop when we lose a loved one, another very lonely and painful journey starts.

I hope this public discussion doesn't kill this thread and that the many great people who post here go on giving and getting support.

Again, my best wishes to all reading this.
CH

Hello CH:

I wasn't actually writing to you, I was writing to Martyn.  I certainly wouldn't have called it a 'spat'.  It was actually a reflective post between friends.

I'm not sure why you seem to feel the need to be right and to correct people.  I think your first instinct not to respond to this issue was a good one and you should follow your instincts.  It sounds to me like Mandy and Martyn have resolved the misunderstanding in an adult fashion and I think that's great.  It's water under the bridge as they're both dealing with much more serious and heart-rending issues.

Just my opinion.

Au revoir!

Jill

Hi Jill,
I know you weren't writing to me but I responded because I'm the main target of the initial post - see Martyn's PS.
CH

OK, back to business!

First of all, Lors I am so sorry I missed your post about your dear mom's funeral.  I know how devastated you were at her diagnosis and how you spent every possible moment helping her fight this horrible disease.  You and Scott made an amazing team and if courage and perseverance had been enough, you would have won the fight!  I hope you find some comfort in knowing that. 

Ann (Ackers), it must be heartbreaking to see your mom so restless.  My thoughts are with you and your family at this sad time.

Angie, please don't think we've lost sight of you over the last few days.  It looks like you have received some excellent advice from our seasoned posters and I hope it helps.

Nerak, we haven't met but I loved your comment that we're like buses, nothing for hours then three at once.  Now that I have to rely on public transport, I totally understand what you mean!

Greentea, I also live a long way from my loved one who has brain cancer.  She is in the East Midlands and I'm in Ontario, Canada.  It's tough isn't it and carries its own challenges.

IdreamofFiji, you hit the nail on the head when you talk about the changes on the site.  It happens all the time, it is a revolving door.   When I joined in 2007 there were about five of us and  a right raucous bunch we were too, I'm pleased to say.  Sadly, many have come and gone since then.  each time, the culture of the site would change and at times the banter could be very funny, an odd way to relieve stress but it worked.  Hope your mom is doing OK, she sounds like a splendid Yorkshire lass!

Debs, I love your attitude.  Your comment about statistics was so true, thanks for sharing it.  We need to be reminded that we are individuals, not statistics.  There is an expression: 'you're unique, like everyone else'...  funny but true

Suetoy, thinking of you at this difficult time as Pete struggles with the 'beast'.  I hope you can take a little comfort from knowing your friends here are thinking of you too.

Susan206, hope you and Paul are OK?  Planning any more air balloon trips soon?

Ann, your advice to get care packages set up sooner than you think you need them was excellent.  I'm so sorry to hear of your situation but it's amazing how we find the strength we need, isn't it?

Pompei, thanks for your vote of confident for our "lovely train driver' (quoting IdreamofFiji).  I agree wholeheartedly with your comments, he has welcomed many and helped many as they reach their station.  Your comment was well received.  Hope your hubby is as well as can be expected and that you're remembering to take care of yourself too.

Turkishgirl, you are right, Martyn has made many welcome at a very difficult time in their lives.  sometimes our BT thread is sad, especially at this time when one of our friends has just lost her daughter and other times it can be very uplifting and make you laugh.  One thing's for sure, we're all in this together!

Mandy, you are such a brave fighter, both for your dear husband and now for your daughter.  I am so impressed with the way you have handled this misunderstanding that has caused a bit of grief and I hope you will always feel welcome on this train.  I don't know how long my journey will be but I will always be happy to see you drop in for a chat.  When people mention how uplifting the banter has been in the past, I vainly thought they referred to the banter I used to exchange with Jane and Shirley, then with Martyn and Kate, Soup and Stephanie, Clara and ....oh the list is endless.  But likely they mean more recent banter between you guys because I've not been around much in the last year due to my vision problems.  But I also know how it feels to be so drained you simply don't have anything more to give, at least for a while.  Take care of yourself Mandy.  You are much loved on this site and we really, really want you to stay.

Martyn, please say you'll keep driving this train.

Love to all, posters and readers alike.

Jill

Hi Jill, lovely to hear from you, I know you were not postng at the time I lost Mum or you would have been posting a reply, its been over a year now and we are slowly trying to get used to our lives without her unfortunately we are back in a similar situation as my father-in-law is undergoing treatment for bowel cancer, he had a big op back in April to fit an illesotmy bag etc but at the moment he is doing well but its just something that Scott and I could have done without especially with what we had just been through.  I do hope all of your family over the ocean are doing well, love to sue and jim too, take care and hope to hear from you again.

I do hope the site returns to normal again all seems a bit childish to me and thats probably coming from one of the youngest posters and one of the nearyl first originals to this site which makes it very sad to read but then again it won't affect me as such I am on a different road now but when I went thru it with Mum this site was my life line and as Mandy said when the site becomes quite jokey etc its very hard for someone grieving to find things amusing, sorry but it is.

Lorraine x