We Talk Brain Tumours

Hello newbies and oldies:

Martyn, I can't imagine this thread without you.  I don't travel on British Rail very often but it's my understanding that if passengers get stroppy to the train driver, it's not the train driver who leaves!  Let's just hope the delinquent passengers hear your message and behave themselves otherwise we will have to boot them off.  It is sad that our little group is affected by such negativity but it's perhaps the way some people deal with the stress in their lives.  My heart goes out to all of you and I urge everyone to remember we're all in this together! 

SusieQ, I finally figured out my personal messages and see you kindly invited me to a meeting at Treetops in 2009!  Well, I wish I could have come and maybe another chance will come our way.  I'm so sorry to hear of how things are going for you, keep your chin up love!

Susan, lovely to hear from you.  Paul and Sue seemed to relate well to each other at our earlier meet at Treetops.  I often wonder how you guys are getting on.

I spoke to Sue today at the Ilkeston hospital.  The staff there are absolutely lovely and making her very comfortable.  I told her of our mini reunion here on the site and she asked to be remembered to you all.  Martyn, she specially sends her best wishes to you and Doreen.  That time we met at the Ilkeston IKEA was a very special time for her (me too, actually).

Angie, sorry you've found your way here but as you've already discovered, there's lots of lovely people here who will help you in any way they can.  It is a truly heartwarming place.

Hugs to all from across the pond.

Jill

Hi Postmark,

I have been a member of the Mac Community since March,2009 when my husband was diagnosed with Terminal Bladder Cancer. In March, 2010 it had metastised to his brain, also inoperable. It was at that time that I started to read this thread. Although I have never participated, truth is, I didn't know what to say. Well after reading your post today it has now pushed me into writing. All I really want to say Martyn is, please don't stop posting. You'll never know how much of a lifeline your posts have been to me. The friendly banter and information swapping between yourself and many others has been heartwarming and I'm so sorry if things don't now appear that way. Either way, please keep posting.

All good wishes.

Hi Everyone

Sorry its been a bit quite of late as I haven't been on here just lately as alot has been going on over these past 6 weeks.

Steve ended up in hospital 6 weeks ago because chemo kicked in and with the anaemia, energy levels were very low/shortness of breath etc and we couldn't cope at home as we can't have any lifting equipment.

Chemo was stopped mid stream as it is now affecting his liver and we are now at the stage that Steve's body cannot take anymore treatment.

His mobility has totally gone now but I feel that this is due to him lying in a bed for 6 weeks and his muscles have just deteriorated - it breaks my heart to see how thin his legs are.

Just as Steve went into hospital we finally got a bungalow so I have been busy getting it ready expecting him to be home after a few days but he then got cdif, then a chest infection, has had two blood transfusions and now has another chest infection.

He must be tough to get through all of this. 

It has been very difficult these past two weeks as we have had four doctors say 'he may not have long' it could be quick!  It has made me so mad because we have to remain positive and believe that he will fight the best he can.

He was really down today as he is now convinced he won't come home (to our new home).

Nearly every day he asks when are you taking me home to the bungalow.

Just a word of warning, some of the delay in coming home is that they won't let him home until a care package is in place.  We need two carer's four times a day.

You really need to start putting these things in place sooner rather then later as it is all down to funding by Social Services and NHS and it has to be fast tracked.

Sorry if all of this is over the place but finding posting difficult at the moment.

Martyn,  not sure what has gone on but please stay with us, your support is invaluable, love to Doreen and lots of hugs for you to.

Newbies - no protocol, when you first come on it seems that we all know one another - you will soon get the gist of things - just keep posting and don't get despondent if you don't get a reply as postings sometimes get missed.

Alot of us are having difficult times at the moment so find it difficult to post.

Look at our profiles to see our journeys so far.

Anyway - everyone take care

Lol Ann xx

Sorry to read your post Ann. Your Steve is obviously a fighter as you say - I hope the care package gets organised asap so you can get Steve home quickly.  Keep strong and take care xxx

Also sorry that you feel this way Martyn - as you say this is a place where so many people seek support and although I am also unsure what has gone on I am certain you should not feel pushed away. You're right also in saying that our journey's here are very lonely and isolating - and it continues I'm afraid to say.  I will try and PM you asap but am away for a while to try and recharge my batteries - things have become too much, what with P and then with my daughter, which is ongoing.

Take care everyone. xx

Hi All,

Thanks all (with extra special hugs to Jill - yes our first meeting was a truly remarkable day). for all your support.  Yes I am going through it all again with my mum.  My sister and I tried to follow her wishes and nurse her at home.  This however cannot be the case.  Because she was mobile - she was so restless and aggitated so she is now in a lovely caring hospice, and me my sister or dad is with her all the time day and night.  We do not think it will be long now.  

Sorry to burden others with this tale - not strictly relevant to the B.T. thread, but those that know me will sympathise.

Martyn - I am not sure what has gone on.  Send me a text and let me know.  I hope we can chat soon.

Love to you all,

Ann

x

Martyn I was very sad when I read your post, I like others are not really sure what has happened to bring this about.

It was because of you after sending me a message that I joined this group.  At the time I was lost but you found me a place to share my sorrows and thoughts with others, you have also made me laugh when I was feeling down.

This group is very special as I have always found it to be supportive and filled with kindest and everyone including you made the worst possible time of my life bearable even when you all were going through bad times, so it's a sad day that someone has felt to need to try and disrupt it and made you feel unwanted.

Martyn you have done so very much for this group I hope you will keep posting.

So much love and hugs, also strength to you and Doreen and of course to everyone else on the train. xxxxxxxxxxx

Hi,

Martyn, I read as much as I can, but don't write on here much now, however I felt compelled to write. I have to admit I'm not quite sure what the situation is that has upset you, sometimes there are so many messages I probably miss some, but I would also be really sad to see you leave, obviously if it's the right thing for you to do then you must do that, but it woun't be the same without you.

You are always one of the first to make sure that a newbie hasn't been left without someone replying to them and when I joined you were one of the people who commented- it's amazingly flattering seeing my (user) name mentioned in someones post, knowing they've taken time to write a kind word for me, and I'm sure other's feel the same.  Your banter lightens the mood, and even though I'm not one of the people who knows you and Doreen well, I certainly feel admiration for you and have a little soft spot for you :0)

"Drama Queen? maybe,  foolish, over sensitive old fool? probably..." and no-one would hold it against you. I have times where I can barely look at work colleagues or friends because of something they've said or done because I too feel 'I have so much going on right now in my life I just can't deal with you too' -  they are causing me pain and I'm hurting enough already. Like I said, do what you have to do, no one can hold it against you - self preservation and all that.  Much love to you, our lovely driver,  whatever you decide. Fiji. xox

My mum's doing well, tough Yorkshire woman that she is! She's had her first PCV and coming up for her second, she's not had nausea which is brilliant, but she has felt tired and I appreciate this will only be more the case as the treatment continues. I am hoping she is feeling as well as now when we have our family holiday in August, which I am really looking forwards to, it's something my parents, brother & his wife and kids and I may never have got round to without this illness, so manybe that's one thing to be grateful for?

 I sometimes look at her and wonder if I've dreamt it all, can she really be so ill? Are we really going to loose her, it just doesn't seem real. Some of the support of my friends has waned (spelling?) and I feel really angry with them, sad and disapointed. I try to think compassionately - they have their own lives, it upsets them thinking of cancer etc- but ultimately I'm just not sure I can keep forgiving. I have contacted one friend to tell her how much it hurts, she responded, sounded sorry, then I've not heard anything in the month since. How can people knowingly hurt you? It's beyond understanding. I have also had some excellent support, sometimes from unexpected places, which has been al really nice thing to discover.

It's such a funny thing this illness, how it effects your life in so many ways. I had a close relationship with my parents already, but I am glad I have had this time to be able to really make sure they both know just how much I love them. It is terrifying not knowing what is coming, but it's better I suppose than suddenly mum just not being there. Sorry I am rambling.

Anyway, much love to all of you.

Just out of interest is anyone in the South West? Most people on here when they mention their location seem to be Manchester/ oop north.

xxxx

Hi folks

Long time I suppose since I have done this but felt I had to write.

Not sure how Martyn feels the way he does but I know not long after I buried my Mum last year I posted and not one person on the thread at the time replied and it does hurt especially as the mac thread had been my life line over the 2 years that my Mum was so ill and at that time  her death was so raw and especially making a statement about the funeral I did expect to have replies so I am afraid since then I did take a back step don't get me wrong I still keep in touch with all the lovely folk I made friends with back in 2007 and I always will, I will be forever grateful for Jane finding me that day back in June 3 years ago when I did not know where to turn when Mum was diagonosed, the ones who constantly keep in touch with me thru different ways than mac will be friends for life, as I am a scottish girl through and through the other mac thread glioblastoma why, why, why became more of a source to me to post on as alot of the girls on that including the lovely Gayle who started the thread are from Scotland and a few of them girls have all met and shared drinks, tears and laughs, incuding myself who met Gayle and Martin last year at this time.  Its not that I don't care about the we talk brain tumours site I read occasionally but I have had to move on and away as its been so tough to live 55 weeks without my Mum, to start with it was like it was a dream and she would be back but now a year down the line it is very difficult but for her and my lovely family I am trying to move on.

Ann - So sorry to hear about your Mum, I will get round to e-mailing you personally, I think about you often x

Jill - It was lovely to see you posting, I often wondered how you and Sue were doing, so sorry to read about your sight causing you problems, even thou we have not met your a lovely person and I wish you all the very best in life, with love across the ocean x

Sue - I looked out your e-mail addy that you had sent me previously on fb I will send you an e-mail soon I promise, so glad to hear that Paul is getting along fine, hope you are too x

To all fighting this journey I wish you all the strength in the world to get through it.

Lorraine x

Hi

I am unsure if this is the 'grown up' and appropriate way to finish this - but as I type I will see if I end up pressing 'post' at the end. I am uncertain if this will be perceived as a 'playground incident' and really this post has no right to sit alongside the rest, for those who are struggling and battling on through.  For this I apologise.

I am very saddened by Martyn's post and have emailed and telephoned him today - I felt I had to qualify his post as I felt it was directed at me.  Unfortunately I was correct so I have come here to own up to upsetting Martyn - unintentional as that was.  Apparently Martyn has been contacted by three people who have stated how disgusting my post was to Suetoy - or rather that I didn't mention Martyn.  I am astounded to have been accused of such behaviour - I have continued to come on here in support of the many people who have supported me during my husband's illness.  However, in recent months I have posted less and less for a variety of reasons:  I sometimes feel I 'know' too much, about the next part of the journey and therefore my posts would not be relevant nor appropriate.  Also my daughter's diagnosis of her bone tumour (which finally turned out to be benign but the operation has caused on-going complications) soon after Peter's death caused such anguish I found it quite overwhelming and obviously all this was alongside coping with my own grief and trying to support my three children.  So to continue to continually support others was too much and I think you would all agree that it appears to be a natural transition that people move away from this site after their loss.

I appreciate the banter that used to go on between various parties has diminished, really since the old thread moved over to this new site - but also mainly because of the death of my husband.  I'm not sure how people would think I should react but I can assure those who have sat in judgement of my posts I do not feel like I have banter inside of me - instead I have this huge void which nothing is going to fill - my most favourite person in the whole world is not beside me - I am simply half the person I was and feel like I am wandering around in a dark room trying to find a way.  So if people think my lack of banter with Martyn on this thread is giving him 'the cold shoulder' then maybe those  people should consider things from my position.  I have scrolled back through the pages and see that one of my recent posts actually asked after Doreen and Martyn - but my response to Suetoy was personal and addressed to her - as was Martyn's.  This causes me confusion as I obviously didn't mention many other people in that post either?

Perhaps it should also be mentioned that I have continued to communicate with Martyn and asked after the both of them but the 'first contact' is always from me which is fine - there has never been a fall-out and I will always wish them both well, although Doreen I know is struggling just now.  But I have to add that the energy taken away from you after a loved ones death makes functioning a difficult task so I cannot see how I can be expected to provide the same support as I did previously.  I have not really communicated with people generally over the past 6-7 months, the battle bridge has been firmly lifted and perhaps some would see it as selfish but I have been licking my wounds and been attempting to find a focus - I think it's called survival.

Whilst speaking to Martyn today I told him that I am withdrawing from this thread, that his need is greater than mine as I have had to find other more appropriate forums for my emotions.  Sadly Martyn has expressed his wishes that he won't be returning - I hope I won't be held responsible for this as I have tried to act in his best interests - it upsets me to think I have caused this decision although I think emotions are running high and people (including me) are hyper-sensitive. I hope Martyn finds a way to return as he has been able to do so previously.

Once again I apologise for this post but I felt the need to have to defend myself - to be judged by people who know little of me or of my circumstances and likely have never met me is offensive - this isn't meant to be directed towards Martyn with whom I have shared some 'good' times with but it is an explanation to those who may not have acknowledged the complicated lives we all lead albeit on differing paths.

So, from me it is certainly farewell - I'm sorry to those who I have come to know over time but will perhaps not know when your paths change direction - some of you I am friends with via FB so will continue to pop up over there as and when.

As always, take care - life is hard without all this.  To Martyn and Doreen - love as always - and I hope you will contact me as you said you would.  I hope Doreen shows a big improvement asap.

Bye, Mandy xxxxxxxxxxxxxxxxx

Hi,

I sort of feel wrong for replying, as I am even more aware now that I had no clue of the situation going on, however, as I replied to Martyn's post I felt I should also reply to Mandy's. I hope people don't feel I'm sticking my nose in as that's not my intention.

I don't really know what to say other than I am sorry that a misunderstanding (if I may call it that) will mean that both of you leave. I hope at least that as Mandy said that she is getting support on other threads, I suppose it makes sense that you are on a different part of the journey now and you need a different kind of support, but I hate for anyone to feel they're not welcome here. This thread 'belongs' to all of us, anyone who has ever written old and newbie, and I would hope everyone will remain welcome. I can't imagine that anyone would want this 'life line' to be taken away for anyone.

I'm sorry that people are hurt and feeling sad and I hope it can be resolved.

I know I don't know most of the regular posters well, and there were already friendships existing when I joined (just before the site change) but I just hope that everyone is able to find the 'way' that is best for them.

And I for one hope that Martyn and Mandy will both return to post again, I wish you both the best. Both of your knowledge and kindness has touched many I am sure.

sorry again if people think I should keep my nose out, I just find it sad seeing 2 great people hurting even more when life's hard enough, but I appreciate I don't really know the full story. This is just my humble opinion.

Love to everyone

xox