Multiple Myeloma

[Mary]

Caring for my husband, who was diagnosed with Multiple Myeloma 18 months ago. This is cancer of the bone marrow. It's difficult to know how to 'File' this section of the Board. Should each separate life-limiting illness be the title in the Subject matter? I've done that anyway and hope that any others with experience of this disease will reply to me. It's not a common disease and we have no support groups/information locally which makes it difficult to be able to compare experiences. Hoping I've got it right here.

[rosemary]

Morning Mary,

Just a quick line to welcome you to the forum where I am sure you will get support to help you.Its nice to know that you have been reading for a while and took the "plunge" to join us.
This new forum will hopefully attract many more carers like yourself.

You raised a good point about the "filing" on this thread but I think the way you have done it is fine.I am sure if any members/staff have further suggestions we will see them in due course.

In the meantime,look forward to getting to know more about you and your hubby.

Rosemary

[Maryann]

Hello Mary

A warm welcome to the new forum, so glad that you have been reading and decided to join us!

I think that its a good idea to list each different illness with its own thread, means that if their is someone else caring for a loved one with the same illness it will be more visible.

Take care
Maryann x

[Mary]

Thank you Rosemary and Maryann for your welcome. I must admit that on both occasions when I have been notified of a reply to my post that my heart has skipped a beat. I am hoping and praying that I am able to make contact with someone else suffering/caring for someone with this nasty terminal disease. It's not only the isolation of caring for my OH that makes life so miserable, it's also that we know of no-one else in the same boat, so to speak. I'll continue to wait and hope... Thank you

[rosemary]

Morning Mary,

I have been looking to see if anything else around to offer you some specific help and found the following....
http://216.239.59.104/search?q=cache:C6 ... cd=1&gl=uk

We can still support you here but that forum relates to multiple myeloma.

Let us know if any help.
Rosemary

[Christine Carers UK]

Hi Mary

You might already know about them but I found an organisation called the International Myeloma Foundation - www.myeloma.org. There is a whole section on finding support including a list of support groups in the UK. Not sure if there is one in your area but it might be worth a look.

I also found a forum specific for Multiple Myeloma where there appears to be quite a lot of carers posting - might be worth a look too.

http://www.cancercompass.com/message-bo ... 119,24.htm

Hope this helps.

Christine

[Mary]

I can't describe how pleased I am at the care you have taken to find some links for me. So this is what is meant by Carers UK? I am humbled and so grateful. Thank you so much - it means such a lot to me.

[Mary]

After following the above links and registering as a member, I am now in touch with a lady in Philadelphia USA who is also caring for a husband with the same illness. I have immediately noticed a difference though - they seem to be more actively involved in their medical treatment than we are, or are allowed to be, here in the UK. We are at a loss to answer some of the questions she has asked about blood readings, protein secretions etc etc. I am going to print out her questions and take them next time we see the Consultant: I wonder what his reaction will be when I bring out this list of technical questions
Still hoping to meet someone on this Board who is caring for someone with the same illness. I'm probably going over the top, but so grateful for your help here. We've been on our own for so long. Thank you.

[Christine Carers UK]

Hi Mary

I'm so glad you've found someone in a similar situation to talk too, even if they are a bit far away!

Hopefully someone will pop up on here soon enough but in the meantime keep posting and let us know how things go with your consultant.

Best wishes
Christine

[normangardner]

Hi mary, I have a cousin in Canada, who's husband died recently of cancer. She emailed us all regularly with the latest test results. I myself read the Harvard medical school Website when trying to make sens of my wife's diabetes / dementia. But UK doctors just demied any connection between the two conditions despite the latest research findings in the USA. They never did find out what caused my wife's dementia. I think they regard the likes of us as barrack room lawyers, who have no business prying into the mysterious world of medicine etc.. If we were paying directly or through private insurance, perhaps the story would be different in the UK.
best wishes normangardner