[katydid]

Mary – thank you – the kindness of strangers !!!
What you say is true – and gentle but fierce and I thank you for that
I have always been an independent person and it scares me being needy of other people and it scares me being so vulnerable to them and their reactions
So I have taken a deep breath, smiled a smile, cried with my husband and had an email from my sister – and endless love from my mum and dad and my beautiful and very pregnant daughter – so for today at least I will say ‘I’m great’ if anyone asks me !!!
Cathie x

[katydid]

So good to hear from you Mags – and good for you for standing up to her – thats why I say this is the worse kind of alone – because if we were all underweight and swooning palely on our pillows people would bring us chicken soup and grapes and wipe our fevered brow and put their own lives on hold to tend to us – but most of us – well we look ok , we work, we cope, and so they think we are ok – well, over exaggerating, and then they say such bloody innappropriate things !!!When I punched back ( metaphorically ) at my sister – she told me I was using my illness to manipulate my ‘nearest and dearest’ so we can’t win !!! sometimes I wish I hadn’t told anyone what the diagnosis was – then at least sometimes I could feel normal – instead of like the "nearly but not quite – so you still have to deal with her – deceased "!!!!
Sorry for raving !!! welcome mikeir – good to have you on the thread – how many times have people said that ah!!!! and like Mags says – you end up feeling like a fraud , while inside for me I just want to scream at them – don’t you know I’m dying here ( actually I want to scream much worse than that but when I swear on here it deletes my post !! ) but I will share a secret with you – nothing was worse for me than when – in the early days of this, both my sister – and a few days later my best friend, both couldn’t cope with my meltdowns and both said – Cath – you have to undestand, I have a life to live and I can’t spend all my time dealing with your angry phone calls – ‘ I think that was the worse thing I have ever heard – they couldnt deal with me because they have a life to lead – I wanted to say – I didn’t but I wanted to – lucky old you – you have a life to lead –

Cathie x

[katydid]

I am transfusion dependent already and only was diagnosed in May this year – I think it is really just a matter of how early they diagnose it – I have probably had it for years but didn’t know til my Hb count was so low I could barely walk

Cathie

[katydid]

Thanks for responding Kenneth – and don’t apologise for the length of your response – I think there are very few places where we can say stuff honestly without having to deal with all of the reactions that we get from friends and family. My sister is not talking to me any more because I yelled at her during one of my many meltdowns – she says that we should go to therapy together to work out our relationship so she feels able to support me !!! that kind of reaction is not what I need. I have given up smoking ( of course because I had to because I am booked in for a bone marrow transplant ) so I feel like rubbish. My husband has also given up in support but in the process has undegone a major personality change and I don’t even feel like I know who he is anymore. Of course he is really stressed out because soon he will be the sole bread winner and have to take care of me – I think he is real angry but feels like he has no right to be so he has just distanced himself from me.
My daughter is due to give birth to my second grandson in a few days – my first grandson has just turned 13. And like you I look at him and grieve that I may never see the man he will become. This condition is like living in a grief vacume where it is impossible to move anywhere – you can’t go back because you know now that you are sick, and you can’t go forward because you have no idea if you even have a future. And people get so so tired with you – I am impossible to deal with – angry, anxious, sad – and people are increasingly keeping their distance – maybe that is what I am trying to create !!! and tired – oh so tired – people say – oh you look really well, oh you don’t LOOK sick, oh you are still working so it can’t be so bad. And all you can say is – I am just so tired
Sorry – I don’t mean to sound so maudlin – but feeling that way at the moment

Cathie

[katydid]

Hey – I have not been here for so long that I have forgotten how to start a new thread – but never mind – I think I will stay with this one in honour of Laurie – so………
how are all of you going out there ??? how is it facing your own mortality, facing the fact that people get on with their lives whilst you look in the mirror and think ‘ I might die this year’ ,
I have this notion of being a sick old antelope – you know , when you start lagging behind the herd and the lions are just out there waiting to bring you down – and you try and be strong and keep up, and you try and have others believe it is ok – but you start to realise that they are looking forward and not back to where you are – and you start to know how alone really feels – thses are my thoughts guys – I am interested in yours
C xx

[katydid]

Hey – its been a while since I was here. Still makes me cry to remember how sad I was when Laurie passed – and how much that made me have to face my own death. I hope you are all as well as can be – maybe I will start a new forum – and be a bit wild and contentious – make people react and be angry with me – you americans are so tame and polite it drives me nuts !!!
Cathie

[katydid]

Ariana and Gary – I am so sad for you both that you have lost your mum. I greatly valued the talks I had with her, both on this site and privately – where she was so supportive of me. I have often felt at odds on this site – a bit of cultural shock because we seem to communicate so differently here in the Antipodes than you do in US of A – But Laurie was a great communicator and went to great lengths to make me feel welcome and share her love and her wisdom with me .
I don’t know how old you guys are but I have a daughter of 34 and step daughters of 22 and 19. I am 51 – so not that much different from your mums’ age – if I die from this bloody thing called MDS – then I hope and pray that my kids honor me as well as you honor Laurie – your mum.
And as a mum ( I think you guys say mom !! ) I have to say 2 things to you – 1. remember the important stuff – the love, the joy, the laughter, the fun, the lessons, the stories, the truth, the games, the holidays, the warmth, the anguish, the hurt, the grief, the journey, the cuddles, ( and of course , the ice cream !! ) 2. move on and live your lives – we do not want to be stones around your necks – you honour us most when you fly – so fly xx

[katydid]

Hi Mary
Lovely to hear from you
My blasts are at 2% from April this year – but I am scheduled for next BMB on Nov 9th – Will hear on 9th Dec what the results of that are and whether I have been accepted by the transplant panel so – fingers crossed ( I think !!! )
Int 1 is the RAEB I think – still have trouble translating these things between here and America
And wow – day 14 of the first hundred days – what is your partners name and how is it going so far ??
love and thoughts
Cathie

[katydid]

welcome Jeanie – you sound a lot like me – int 1 and not long found out what we are dealing with.How are you going dealing with family / friends reactions ??? I get a bit over this site sometimes as i have trouble fitting in – but good you are here – keep us in touch with what is happening

Mags and Laurie – I haven’t been here for a while – they have found me a donor ! very scary – but seems to be the teatment of choice out here in the colonies !
Hope you are both as well as possible
much love
Cathie

[katydid]

I have a transfusion when I am about 9.1 – was 8.9 this last time but really felt it – doc said that is about normal for a tansfusion low 9’s to early 8’s – I was severely symptomatic by 8.9

ps Zoe , Mags – am here quietly xx c

[katydid]

sister – my heart is with you and your family. Please accept our love and condolences for your family on your brothers death. I am scheduled for a BMT and I know I may die also – my 2 brothers and my sister are having a hard time with it as none of them were a match and I have to go with an unrelated donor. My daughter is breaking her heart. But I know that if I die I will go with all the love in the world – and there are much worse deaths than that. I am sure that your brother would have understood this point of view.

Bless and love from New Zealand

Cxx

[katydid]

thanks Zoe – I get it now – I didn’t know people could arbitrarily change the name of the forum
But will take this opportunity to say goodbye as I don’t think this is the place for me – us kiwis ( from New Zealand ) have a culture of being very upfront and leading with our emotions and I know this has annoyed some people on here. I guess I just say what I feel and it ain’t always nice – or perhaps appropriate. So sorry to those of tou I have offended – my only real wish ever is to have ‘real conversations’ – I have lots of trouble with all the appeals to the almighty and other god references and with all the numbers that you’all produce. But I don’t wish to denigrate your faith – I just want to be in the moment – sad, angry, placid, inconsolable, happy, silly, – beyond help I am sure some of you think. But I have to laugh – I have free health care but no insurance , no mony and no future job prospects – my husband is not earing and I am nearly too sick to earn – I have a grandcild on the way – 3 daughters and a beautiful 13 yr old grandson – and wonderful parents who rely on us and whom I can no longer guarantee a future for – life is [censored] – and my faith is only in what I see touch hear and feel – which means – we will be fine – we will get through this and we will know that if death claims me it will be because that is the way of nature and the universe – but you see – I am not very good at remaining unemotional and reciting the numbers – I do know them all by the way – I just can’t be bothered reciting them . But one thing before I go – Eve – I did learn – I finally got what you said about keeping clean and avoiding crowds and using lots of disinfectant – that is when you have a low white blood cell count ( or, sorry is that platelet count ) you have to be careful – I don’t – I have a low red blood cell count which results in aneamia – symptons of which are fatigue – utter tiredness physically and emotionally, loss of memory, anxiety , confused thinking, lack of appetite and weight loss, depression,all of which I have – and I still have to work 6 days a week as the only breadwinner in my family. So again – sorry if I have upset or offended you – I won’t do it again – take care have faith and aybe I will see you in the next life.
Lots of love – Cathie ( ps I am – contrary to some reports, actually a good person with a goodsoul – sorry I couldn’t show that in this environment )
pps thanks Laurie, Zoe et al for you lovely support and sharing

c xx

[katydid]

On mine this forum is now called ‘end of forum’
Cathie

[katydid]

since I haven’t heard anything from anyone maybe else ‘they’ ( the forum ) is closing us down – why – are we danger of starting to tell the truth ???? or maybe in america they can’t get hold of enough $$$ to keep this going ?? A comment from the admin team would be welcome – particularly about why the name of this thread has changed ? to ‘end of forum’
Cathie

[katydid]

I think they have jut revamped certain aspects of the forum for security reasons
Though I notice that what was named only for us with mds has suddenly become ‘end of forum’ – so don;t know what that is about

Cathie

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