[eveParticipant]

Hi David and Charlie
may be i should have said you are entitled to apply for AA,but you have to make sure you fill the square boxes with square pegs not round ones,8-)

Attendance Allowance is what it says if you need someone to attend you because you can not do things for yourself,may be just in the day or during the night.there are 2 levels.
The only people with Cancer that I know who do not get it,are people who do not apply if it is refused you have a right to appeal.

I do not think people should be negative about claiming AA as lets face it many are not going to claim the pensions they have worked so hard for.
I think the full amount is £73 a week,I am here 7days 24 hrs a day and drive because my husband is on strong drugs,attend all his needs day and night,and have done and will do in the future,do all his personal care,and at about 18 pence an hour,that,s slave labour.

So I say to any one not claiming,claim,if you need help claiming pension people will help,Mac Millan nurse,This is not just a journey about MM it is about surviving as well.

Sorry to get on my soap box David,but I find it very hard when i watch people who for what ever reason do not claim what they are entitled to,when you see other people milking the system,People with disability have taken a bashing due to adverse publicity ,so lets set the record straight Myeloma is a Cancer that destroys your bones,if your lucky like you,you will survive a broken neck .I think you will agree with me you need the financial help at the beginning,but you do not get it until you are 6 months down the line.I know from my own experience how hard at the beginning it was for me. Love Eve

[tomParticipant]

Hi All

Eve I applied for AA in 2009 whilst I was still bald(er) and still having treatment not long after my SCT mine was refused :-S and I thought How Bad do I have to be to get AA if I am diagnosed with a terminal Cancer and they say No Thanks you can walk and cook Etc Ext >:-(

But trust me Folks that Pension Will be mine am not letting them get that Lol 😎 only another 9 years (cos they raised it) and Pension is Mine he he.

Hope your all doing good and enjoy the week end weather 😎

Love
Tom "Onwards and Upwards" xx

[eveParticipant]

Hi Tom
Just a quick question do you get DLA.???
Were would we be without your cheerful face,I am sure you are going to be one of the lucky ones and still going down to your club until your 100 years,They might give you free drinks by then .Love Eve

[HelenParticipant]

Hi Charlie
You don't always feel terrible, I worked through the initial chemo and was very tired but I found the distraction helpful. I then went off sick just before my SCT. I managed to go on holiday to France just after stem cell collection, and despite having a very rough ride after SCT, I have had a week in Cornwall 3 months after SCT and have been to New Zealand 9 months after. Plus several weekends away. All of which were while i was on the Revlimid maintenance. Am planning many more holidays in the next few years. My feeling is do whatever you can around the problem as long as the medics give you their blessing.

Eve I have no chance of AA, only just been given blue badge, and having applied for DLA, have been warned that it is very unlikely to get it. So hence it is back to work for me!
Love Helen

[tomParticipant]

Hi Eve

I get nowt zero zilch I am just pleased my company has gave me a job I can do and that brings in some money 😎 oh got blue badge and a bus pass and am only 57 years young :-0 the bus pass gives me free yep free train fare from Scunthorpe to either Cleethorpes or the other way and that is as far as Doncaster:-D and free bus rides 😀

And for all those asking yes when/if I get on deal or no deal and win the big un I will say to my Gaffer thanks for looking after me but am orf Lol.
Am sure the club will get me a pint when I reach the 100 mark 🙂

Love
Tom "Onwards and Upwards" xx

[eveParticipant]

Hi Tom and Helen

I know people fall into different degree,s of MM and Slim started off in a very bad place,It still took time to get AA plus disabled badge,Which I thought at the time was bad.IT did eventually come through,and helped us in many ways not as an extra perk,but money spent making like a lot easier for Slim.

As a lot of you know my grandson was disabled and I watched my daughter having to fight for everything,so may be that,s were I get my bee in my bonnet,but I would say to any one,do not give up at the first hurdle,.At the time Slims attitude was { the likes of us will not get anything why are you bothering even trying}I do know people who have not bothered to try for financial help,and I know they have needed it.I find that very sad.As you say Tom how ill do you have to be is not terminal cancer enough.

Its 2 years since are last holiday,at the moment I would settle for anything,but the drive just up to London Kings is enough to finish Slim,So just hoping he improves enough to get a break may be in September.Eve

[Gill20Participant]

Hi Charlie,

It is a personal choice whether you go for the trial or not but for me it worked and I would do it again even though I had a bad time.

I started on the Myeloma X1 trial last July the day before my 60th birthday, I asked if I could delay treatment for a week or two but was told the treatment couldn't wait.

I got randomised for CTD and I think I had every side effect you could think of, by the end of the fourth cycle I found it difficult to even climb upstairs I had to go on my hands and knees. Fortunately I was told that I didn't need any more treatment until my stem cell transplant.

I had my stem cell transplant in January and once again got every side effect going and am only just getting back to normal. I have had a couple of serious infections which have now cleared up but it was all worth while as I was told by my colsultant yesterday that Iam in complete remission. He said they were really pleased and surprised as they did not expect it for me as I had MGUS and smoldering myeloma for 17 years and other medical conditions and also becuase I have been ill with chest and stomach infections. I have had my ups and downs during treatment and been quite poorly but believe me it is all worh it. I feel better than I have for a very long time.

They usually randomise you for maintainance treatment at three months but because I was not well they only randomised me last week 6 months after my transplant. I did not get any treatment this time which I am grateful for because I seem to get every side effect going.

I am actually going on holiday in a few weeks and know I will be able to enjoy it. My first holiday in 2 years.

Good Luck

Gill x

[ElizellenParticipant]

Gill – what wonderful news!!

Well done you for beating the odds and achieving remission despite all the problems you have had to cope with.

[img]http://angedelaube.files.wordpress.com/2010/11/tigger_piglet_dance_animated.gif?w=272&h=276[/img]

I'm doing the "happy dance" for you along with Piglet and Tigger!

You really deserve that holiday!

Eliz
XX
X

[StanstanParticipant]

Hi Gill

How did you feel through treatment? Were you able to do anything? What is it like? When in remission are you just normal again? Did you know you had it smouldering for 17 years?
Where are you going on holiday? Hope you have a great time. I just feel at the moment that life will end as I know it, when I start treatment.

Do you have really high insurance for holidays when you have Myeloma?

Thanks for the reply Gill.

Love Charlie

[StanstanParticipant]

Hi Eve

Is King's a really good place to be treated? Why is claiming for anything so difficult? Really hope you get a good holiday. That would be wonderful for both of you.

Charlie

[StanstanParticipant]

Hi Helen

Really don't understand AA and Blue Badge but I suppose I shall have to get a grip. It has cheared me up that you were able to take holidays and be normal. I suppose I shall get used to it all.

Charlie

[StanstanParticipant]

Hi Gill

Why could they not delay the treatment for a week? Is that usual practice?
I would like mine delayed so I can attend a friends wedding. Just wondered.

Thanks Charlie

[eveParticipant]

Hi Charlie

I live not far from Dover and my husband is treated at local hospital,we are lucky that we have the trials in SE Kent.Slim had to go to Kings for his Stem Cell Transplant it is the nearest for us.
I can only tell you the care was excellent,they are very experienced,and have some of the top myeloma specialist it seems to me a good team of people.They do so many SCT,so they know all the pitfalls.

I have heard Southampton have ,got an excellent myeloma section.

yes claiming things are difficult,it was good advice that David gave,get the MACmillan nurses on board,when Slim made a claim,by the time they came he was in hospital very ill,so I postponed,but I could have done with blue badge and extra money months before,just to get help in the house,because when your nursing someone,you cannot keep up with everything that needs doing.

Charlie try not to think to far ahead,choose your treatment,take one day at a time,and listen to your body,if your tired rest,but just try to live as normal as possible.many people sail through treatment with no side effects others don,t and no one can predict,how it is going to effect you.Eve

[SharonMParticipant]

Bit miffed to read that some of you are finding it difficult to claim benefits. Please contact Macmillan for advice. They sorted things really swiftly for me and at 41 I qualify for full DLA and have a lovely new Motability car. I never thought for a minute I'd qualify but apparently I DO. Living with Myeloma isn't easy whatever age you are. If you're over ….I think it's 65 – you get attendance allowance instead of DLA but you ARE entitled to something.
CONTACT MACMILLAN PLEASE

Sharon x

[andygParticipant]

Hi all.
Just thought I'd add to the benefits discussion. I get the higher rate DLA and mid rate AA and I also get ESA. Just got my blue badge too. I had help with the DLA form from a charity at my hospital. My specialist nurse and consultant both told me about them. So I would advise everyone to ask for help with the form because it's a nightmare to fill in right. Answer the questions as if you are on one of your really bad days too – not your average day and definitely not as if your on a good day. But do please get help. You are entitled to it.
Oh I can feel a soap box moment coming on! I'd better lie down for a while.

All the best.
Andy

[Author]

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