[mhnevillParticipant]

Hi Tom

What's all this talk of not living till 67! I am counting on you still being around then to keep us all smiling!
We all need to travel hopefully don't we.

Re DLA, I got it for very severe arthritis, before I even knew what MM was (happy days!") also, am now over 65 . It was a struggle to get it then, but has been a life-line to me. I feel for anyone claiming today. I think you are all right – you need to be nearly dead already, and preferably bed bound. As I said to a Police Officer, about to book me for "Obstruction" , for parking in Skipton, on a yellow line with still room for two cars to pass, "you'll get old one day!" Those making current policy will also be old, or ill one day. ( By the way, a Traffic Officer came along and let me off with a warning!")

Keep cheerful and keep fighting everyone.

Love Mavis x

[HelenRParticipant]

Thanks Helen and Tom,

That makes lots of sense to me and is roughly what I'm doing – work and spend 🙂 as long as I can, finding out what I can sensibly about the future but meanwhile making sure I enjoy today. I just had a great long weekend break with a friend in Liverpool actually, and am looking forward to getting across to France/Italy before too long hopefully. And actually I'm finding that getting out to work is a great distraction, better than brooding. And meanwhile today i have the day off for pamidronate, so my Dad is coming into London to see me so we'll be off to make the most of that.

Thanks again for replying – and I think we're all superheroes to be honest, doing our own little battles against the dastardly MM. If I could draw a cartoon of that, I would!! Tom already has a catchphrase of Onwards and Upwards!

Best of luck Helen in adjusting to the news of relapse and fighting the next battle with velcade or whatever other powerful weapon they give you – I hope you zap it good and proper ASAP and without too much disruption to daily normality during it.

Helen

[eveParticipant]

Hi Everyone

Mavis you are allowed to be cantankerous when you are over 65 I cannot wait,I am practising now,what,s this about Helen which Helen is out of remission.????

When I said about chances of Tom not reaching 67 I was talking about betting odds,would you not call it a sure bet,but saying that 2 years ago when Slims Myeloma was in full bloom,we went to a Fathers Day Barby,a number of Dad were there,as people looked to say Slims popping his clogs,we thought bak recently ,three have died during those 2 years,so one can never tell,Mavis if he is looking down on you and telling you your numbers up.

I am all for keeping cheerful and fighting,but not burying my head in the sand,I would call it being practical and looking to the future,and I am so glad Tom is and making plans because if he carries on 6am start he might be a sure bet,he would be pushing up the daisies.

He would even be able to we're his onesie. ,!!! Love Eve

[HelenParticipant]

Hi Eve
Sadly it is me who is no longer in complete remission, only low levels so far so I might get a year or more before I need more treatment, we just have to wait and see now. I hate this watch and wait, so uncertain!!!
Love Helen

[tomParticipant]

Hi Mavis
Well am for that bit over 67 and am sure the big man will allow it haha.
Yes it is a bugger to be ill enough to claim it and to be fair I wouldn't want to be that ill.

Eve
Am sorry but if those daisies won't push themselves up they stay where they are lol (av never been a gardener) but am ok for a Onesie Party hehe .

Helen am same hate waiting for "it" to happen be it treatment or waiting to see if it kicks back in, good luck with it.

Love to you all my weekend has just started as my young bride (Elaine) has just gave me a vodka three days of nw carnt wait.

Tom Onwards and Upwards xxx

[eveParticipant]

Hi Helen

I thought something might be up,as no postings,I find I miss things if I do not look in daily

I am sorry,are you not tempted to start treatment while its low !!! The reason I ask this is the was an article about people who had CDT then Velcade having better remission time might not mean anything though.
It,s a strange place to be in remission it is sitting on your shoulder,no matter if you keep trying to forget it.the people who seem to be coming out of remission seem to be having lots of bad general health coughs and colds,I am going to use this as a marker for Slim,as I have this constant worry it will be missed without a BMB.i hope I start to have some. Confidence in remission soon,as I though was remission came,we would enjoy life a bit more,but it is a waiting game.

Velcade worked well for Slim,and felt better generally with treatment,it was lovely to have a week off,but a bit of a hard slog going to hospital twice a day 2times a week .
Slim gets the result of his BMB on the 22 march.so we are waiting..!!! He has to be the one,that it does not show.

Be like Wendy and get as many holidays in now love Eve

[BabsParticipant]

Helen R,
The limit for savings is currently £16,000 for means tested benefits, the first £6,000 is totally disregarded and anything above to the limit is then taken into account,
Like wise you can get contribution based ESA and if you have a occupational pension this is taken into account too, the first £85 is disregarded then half the remainder is taken into account so reducing your benefit.
For income based ESA all of your occupational pension is taken into account so reducing your benefit,
As for planning for the future, there is no real answer to this.My husband and I had just gone through 9 years of overpaying our mortgage and so leaving ourselves short and cutting back on holidays etc with the plan to then salt away the equivalent of the mortgage money into savings for our retirement, then along came MM to pull the rug out from under us!!!!so much for all our plans, never saw this coming !!!!
Helen,
I am so sorry to hear your news, I have only been contributing to this site for a short time but feel like you are all part of our large MM family.
I hope my contributions are helpful and not too depressing, unfortunatley I have since 1991 had severe depression and more recently SAD, this has been in check until just recently but the long cold winter and lack of sunlight is affecting me quite badly at this time!
Love Babs.

[HelenParticipant]

Hi Eve, Tom and Babs
I'm getting as many holidays as possible sorted, trying not to be fedup, though that is hard. I'm not a depressed sort of person but its a close thing now and again! My optimism is suffering!!
I'm not in line for more treatment any time soon I think, though it was mentioned then decided against, I suppose I'll find out in a few days, see what the next test shows.
The thing with infection Eve, you might be right, but as you know, I've had everything going since I was diagnosed….. Even when I was in complete remission and all my blood results were normal. It just shows how cruelly unpredictable myeloma is.
Anyway, we just wait and see – in the meantime, thanks for being there.
Love Helen

[tomParticipant]

Hey Helen

You know its no problem we like you are here to help as and when its needed 😉
Am a big believer enjoy Today as we dont know what Tomorrow might not bring, and i was used to say that before MM bit my iccle ass (as if little lol)

If you or anyone one wants a Longer chat my Email is t.lappin1@ntlworld.com your all free to use it 😀

Love Tom Onwards and Upwards x

[HelenParticipant]

Tom you are sooooooo kind
H

[tomParticipant]

Give over Helen I just might just might Blush ha ha.

Love Tom Onwards and Upwards xxx

[Anonymous]

Hello Tom
Ae you taking a break from twitter??!! I looked at all the benefits and the only thing henry got was the blue badge which is a great help. He couldn't take his pension early as you have to only have a few months to live. We are going to move nearer his work as he gets up at 5.30 and does over an hours drive to work five days a week. He is usually home around 7pm and yes by Wednesday he is knackered. So If we move nearer he won't be so knackered but at the moment he is doing well not had a chest infection since early December. It would be nice if he could work from home one day a week and we have asked for a letter from the hospital twice but nothing has come through. I get so frustrated with people's incompetence.
Don't think he has got the funding for immunoglubin transplant as he was 0.5 over the measurement ! It doesn't help that his employer only pays statutory sick pay (jokers).
This time last year he was going into hospital for his sct and my god he has come a long way in a year but I do still worry so much about him. He says his brain feels foggy sometimes and he forgets things. Still has numbness in his fingers and toes and gets the occasional boney pain. But I think the thought that this might come back at any time plays on his mind. Ts tis why I do the lotto!!! Anyway we all have our own shit to do deal with as they say!! I'm have an operation only hand on Tuesday so this should be very interesting being the patient and henry being the carerer!!! Take care loads of love sarah xxxxxxx

[sandydeliParticipant]

Hi Tom just saw this discuss'ion and just thought I'd put my two peneth in lol
It's two years yesterday that I was diagnosed big big shock !!!!! Anyway two years on after all the treatment sct ect I'm doing ok'ish !!!! But I'v not worked since I couldn't like you I had a six start on my feet all day cutting bacon I struggled for a whole year while the doctors couldn't discover what was wrong with me !!!!! Then I ended up on crutches as my hip killed me !!!!!
Anyway I applied for dls and was astounded that I got it first time !!!!! Had a very good man from age concern help fill it in thank god as it's so hard oh and you have to do the same thing every year !!!!! So keep the old one if you do ever get it !!!!
At first I felt really guilty getting this money but as all my friends point out I'v worked all my life I'm 57 this April payed into state pension that I probably will never get as They'v now put the age up to 67 for retirement so why should'nt I have a little money and it's not a lot believe me but enough to get by and have the odd trips away while I can because it will come back !!!!!!
So Tom you appeal get help filling the forms in exaggerate tell it as if it's your worst day you enjoy the rest of your life and that's not killing yourself at some job that will still go on long after You'v gone !!!!!!
Sorry to be so brutal but we've only got this one life so have what's left of it having fun and time with your family.
Take care Sandra.

[tomParticipant]

Hi Sarah
No I go on now and again and Twitter lol, but most of my posts are on Face Book 🙂
Yes Sarah I looked at it in 2009 just after I had my SCT Done and was still going to see Consultant every week and being segregated in a room of my own, had some one help me fill it all in and got nowt 🙁 so av given up the ghost re claiming it as to be fair I am fitish and only get tired 🙁

As for the forgeting ?? well Lol I was told its "Chemo Brain" and will get better in time?? well I must have got Alzheimer's when the chemo brain had gone as my short term is lost lol.
Good Luck with your hand and tell Henry being a Carer is worst than being a Paitant as i have done both 😀 .

Hi Sandra

I wouldnt feel guilty about getting it but am fortunate not to realy need it? my sights were set on getting better and getting back to work I have done that and do Ok,ish with it.And I am 58 this July so have a few years before stae pension kicks in for me lol.

Stay strong

Love Tom Onwards and Upwards xx

[eveParticipant]

Hi Tom

Well I think you should try again,and if you are refused appeal,you are supposed to fill the form in and put you worse day down!!!

Tom what can they only NO so you have nothing to loose,all this money you are paying for a pension you might not see.as for the small private pension,if you explain the circumstances and the fact you will not have a long retirement ,some pensions will pay out more because you are not expected to live until your 80.

If I started at 6am until 2 it's no life you must have to go to bed ay a stupid hour, that's not living its existing.Eve

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