Hi Victoria
Yep, might be nothing but needs a doc to check it out.
Helen

Hi Graeme
Back to the hospital methinks, first thing speak to nurse specialist. Might be nothing but up our way they like to know about things like this.
Helen

Hi Maureen
Thanks ..it was a lovely birthday, spoiled by steroids a bit but overall great fun and lots of treats.
Hope Ian is well?
Love Helen

Hi Everyone

Thanks for your best Wishers ,we will make the best of what ever time we have,consultant from Haematology has not been near us,although he was in on Thursday and Friday,his off ice is across the corridor from the ward Slim is in. I was told decisions would be made at a meeting and they would come and see us,I waited all Thursday and…[Read more]

Dear Dusk
I’ve not had any dental work so I can’t say what is best from personal experience but I do know that if you are on a bisphosphonate, especially Zometa, invasive dentistry is to be avoided at all costs if possible, to prevent osteonecrosis of the jaw. Any extractions should be particularly avoided for a few months after zometa. I was…[Read more]

Dear Eve and Slim
I think you are quite right to push for what Slim has chosen. Each one of us needs an advocate and he has a champion in you. It is very easy, given the incurable nature of myeloma and the complicated path it takes, for us to almost be written off when things become grim. The closer I get to the scarey decision making about the…[Read more]

Hi Eve

What a terrible time you both have had and I’m so glad to read that he is doing well. Slim is a real fighter and I know you don’t like it said but I’ll say it anyway “he’s lucky to have a feisty woman rooting for him”. Hope he improves quickly so he can continue with treatment at the Marsden, they seem to know what they Re doing

Know what…[Read more]

Oh my goodness, Eve, what a lot you and Slim have had to deal with – and still do. I’m sure all this has exhausted you but I am full of admiration for your determination to do the very best for Slim at the times when he’s not able to fight the whole battle himself. Stories like yours are important for others, like me, who are still getting to…[Read more]

Hi Dusk

Well you have that right sceptical,but that’s my right too,it’s nothing personal!

I am aware it might of happened anyway,but even with a 30 delay,I have had a personal conversation with the doctor who was shocked. I told him I should have had a bet with him,I also consider it’s my fault as I new what it was,instead I said we will soon…[Read more]

Hi Sharon

It does sound like a very rare condition,and you do need to find people who have the same condition,for support and how they cope with it,do ring Ellen if there is some one else with related conditions she might be able to put you in touch with them,plus if you are going to have a SCT you have to the right site for info.
I would also…[Read more]

Dear Ali
A 5 pack of pants- now that’s extravagant! Seriously, I’d drop some pretty big hints, the sooner the better- more chance to get it right!

What can I say, relapse takes a while to get your head round and Velcade was a difficult one to endure. I had 2 Velcade injections per week for 2 weeks then a week off, I also had cyclophosphamide and…[Read more]

Hi Jean

Glad to see things have improved,make the most of this period and have a lovely time Eve

Hi S

Light chain deposition disease???

I must say it’s a new one for me,so I can understand why you feel so isolated,seems to be a mixture of Bence a Jones light chains plus amyloids .
I know from my husband his IGg bence jones light chains,show no protein,but it effected his kidneys.with Amyloids there are only 600 cases a year and only…[Read more]

Hi David

Why is attendance allowance not an option??????
My husband gets AA he is 69 had it for three years,it’s not based on how much money you have,it’s your right,day AA is about 38 pounds,full AA is 78 pounds,if you have a carer who does not earn any money you can arrange a carers allowance,I do not get it as I have a pension.

I would…[Read more]

Dear Ali
Thanks, I had a fabulous time, I’ve been treated like a proper princess! Tea at the Ritz and all manner of treats. Best of all, I feel well and have actually made it this far. And I’m still at work!
How’s your mum getting on?
Love Helen

Hi Rebecca
Ha ha ha ….well! I didn’t like being 60 I’ve opted to stay 48! Come to think of it I’ve never looked ill! In fact I’m apparently a picture of health ! I was told last week that I looked worse before my diagnosis than now, so who knows…. Steroids all round….
Love Helen

Hi Sara
Not everyone with light chain myeloma has kidney problems. I have it and have no bone or kidney damage and have had more problems with the drug effects than the disease so far.
Helen

Hello David,

Susie’s advice is good, and as I responded to another post with this advice I’ll recommend it to you too.  Macmillan benefits advisors are really helpful and should know about anything that might be available to you. You’ll save yourself a lot of time and stress, I think, if you contact your local one. You can either make an enquiry…[Read more]