Multiple Myeloma

Tell us a bit about yourself here.
I have been caring for my husband who has Multiple Myeloma for the last 8 years. I wonder if there is anyone else who is in a similar position to me. I have found it a very hard journey and is getting more difficult to cope with emotionally. Every time his treatment fails we go through much stress and for him physical illness on the path to a new treatment. This one is particularly hard and is taking its toll on us both.
Has your husband had an updated Needs Assessment recently? Any your Carers Assessment? Caring for someone with a long term condition is so tough, you need regular time off from caring so you keep well, mentally as well as physically.
Lesley hi - additional to BB's recommendation, on the cancer front, are you familiar with the very good Macmillan forums? They can be found under 'Community' and there are forums not only for every tumour site/type, but also, to a degree 'intensity' - eg, if you want people who are dealing with secondary cancer, that kind of thing.

There is a wealth of information and support and 'sharing' and also, from your particular point of view, there are sections that are specifically for carers, where spouses/children and even, tragically, parents, can exchange thoughts and fears and hopes amonst other carers, knowing they don't have to 'filter' what they say.

Also, MM isn't the cancer I know (anything really) about, but there is usually, in my family experience, a support group nationally for every tumour type, so I'm sure there must be one for MM in the UK? Again, many have active forums to share with other patients and carers. Some may also have 'local groups' where you can physically meet up.

Your own hospital should, I hope, have a patient support group, though when the tumour type is relatively rare, that may be not possible, though sometimes the groups are 'clustered' - eg 'urology' that can include renal and bladder, along with prostate, that kind of thing.

Finally, may I also recommend an excellent US based site/forum call Cancer Compass, which I found very very useful. I'll post the link to it (I''ve just recommended it to another cancer-carer member here). The advantage is that because it is mostly US based (but with some international members, including quite a few Brits), and because (those with health insurance!) Americans usually get the latest treatments first, it means that Brits can see what is coming along 'down the line' so to speak, in terms of new treatments.

https://www.cancercompass.com/message-b ... 119,24.htm

Wishing you all the best at such a stressful time - kind regards, Jenny