Hi Charlie
Three months ago we lost a grandchild Matty he was sixteen,his sister who is 10 years old put every thing into perspective,she said to her mum everything will be normal but different.

I honestly believe this sums up your position,what seems awful at the moment will seem normal after a while just different.

You will make friends…[Read more]

Hi Charlie

How are you getting on with all the things going on around you,and info you are receiving??????

Charlie you asked about putting off treatment to go to a wedding,you can only ask!!!! they might consider you need to start treatment as soon as possible?? but sometimes you can be given breathing space,it does depend on your…[Read more]

Hi Jean
So pleased for you,it will give you both something to look forward to in the months ahead,I hope all goes well,and you both have lots of enjoyment from the new baby.

Hope yo are both keeping well,have not got round to scrabble on I pad,but did manage to get an invite to you on facebook,but you have to sign into it,will try again when I…[Read more]

Hi Vicki

Slims is on the left,as he is often the passenger in the car,it did rub the line a lot when we did the 3 hr drive from London,It looked a bit red but not infected,the whole area goes red,plus hot with infection,Slim had a little pus on his,so took antibiotics just incase,if you catch it early,it saves a lot of problems,I kept spare…[Read more]

Hi Vicky
Sorry things have not gone to plan,at least you know he might be able to try the other injections so do not get to down.
As for the Hickman Line,Slims went in on the 23 April and its still in!!!!! originally they said it will not come out until his platelets are over 75,and they are only 50 odd.Its just the flushing through every week…[Read more]

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…[Read more]

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…[Read more]

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

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…[Read more]

Hi Di
The person I was thinking of goes under Clucky,so if you find the posting it should tell you a bit more about his treatment,its his wife who does the posting Eve

Hi Paul
The smell is enough to put you off sweetcorn for life,the funny thing was Slim could not smell it.
Eat as much as you can as it will not take long for you,to go off food and drink:-(
Lots of under wear you can just through away,its just so much hassle trying to drag you drip to the loo,so if you can get enough fluid inside you,it will…[Read more]

Hi Gill
Have to reply this way as no E mail address,So glad things are as well as you can expect them to be.
Hope you manage,what you both have planned.
You were just constantly in my thoughts with not posting,and you often see on here people just fade away.
Due up at Kings on the 8th.Not looking forward to the journey.EVE

Hi Dai
I can only comment about when Slim was on CTD,then VCD.
No outward effect at all,never even put on weight,but as you know taking large doses did disguise infection,and made him think he new best,insisting he was going home,when he was on his way to ITU!!!
Once I new how they effected him,I was able to relieve some of his side effects,by…[Read more]

I cannot speak highly enough about Kings (Stephen had both his SCTs in there) but what a hassle for Slim to have to keep doing that journey.

We are lucky in that Stephen sees his consultant at a small local hospital near us an there are two chemo nurses there who we speak to. Stephen gets "discussed" with Prof Skye at Kings when the doctors…[Read more]

Hi Dee
Just popped in to say hello,and wish you well.

I cannot help you with this there are a few people on here who have had kidney problems,I think there is a chap in the west country,who plays in a band,I know he had SCT even though he was having treatment for kidneys,if i am right he went on to have a machine at home for his kidneys.So do…[Read more]

Hello Joe
Glad to see you are getting on with your life and hope you are not working to hard at uni,that is what your mum and dad would have wanted for you,how is your mum coping,bet she misses you both.!!

I hope its your mum cheering you on at the finishing line,and remembering your Dad,Its very hard the first year,so keep your chin up and…[Read more]

Hi Vikki
Hope Colin is home and resting,I think we all go a bit over the top when we realise,some one you care about could become seriously ill,so we do are best to keep everything clean.It is a bit of a worrying time,just do your best,and make sure food is thoroughly cooked.Love Eve

Hi Paul
It might seem like a long time to you,but if you look at the big picture its just a blip,I think you will sail through you are young healthy and fit,but do not forget to listen to your body.

As Debs says its not a walk in the park but it,s do,able.

The hard work will be when you get out,mind over matter,but you will do it Paul,Good…[Read more]

Hi Charlie

Welcome to the site,Its my husband who has MM.

Yes it is very confusing to begin with,but you soon get use to all the information,you have got books on Myeloma my advice is read a bit at a time,it will become the norm soon.

Lets start with transport,you can get financial help,also you do not say your age,but you will be…[Read more]