[DeedeeParticipant]

Hi
My husband was diagnosed 10 weeks ago, he is on the Myeloma IX trial with revlimid. He has been very poorly for last 6 days, had a urine infection and ended up back in hospital again last night (but bought him home) as had an allergic reaction to Allopurinol, not good again today.

I am really struggling to get my head round this and suddenly become a carer for my beloved husband who 3 months ago was bright and full of energy.
Today he has managed a short walk round our bungalow between sleep.

Any help or advice would be really welcome,
Thanks

[MinParticipant]

Dear DeeDee
You have arrived at the right place for help, welcome to our merry band all of whom would rather not be here, but we help each other with advise or just by lending an ear when you feel down.
Dont despair, the illness and the medication will make him feel rotton, but once he responds to the medication and they get his problems under control it will all be worth it.
there is no 'quick fix' and it all takes time but it will be worth it in the end.
I can understand your despair and the worry you must be feeling but you will find some inner strength to help you that you did not know existed.
Plus we are here to help you when you need it
Regards
Min

[HelenParticipant]

Dear DeeDee
As Min says, here is the place for sensible help. 10 weeks is not long to get used to the life changing effect of this disease on someone you care about, you will still be reeling.
I was on Revlimid on myeloma xi and it is not easy, I can't stress the importance of him taking his temperature daily and when feeling more hot or cold, it is a good way to pick up on infection early – as with a compromised immune system and all the drugs, infection can be masked for a while and then become very difficult to treat. I had a chest infection off and on for several months and had lots of antibiotics. The other thing to remember is to drink 3 litres of fluid a day to keep the kidney function up to scratch. (this will help with UTI too, but the hospital folk will have told you all this)
You should have an emergency phone number to get help from the hospital any time you like or need it as there is so much to remember and it is a scary situation to be in. Don't be afraid to use it you aren't wasting their time. The helpline here is very good I believe though, I've not used it myself.
The info guides on this site are really informative too, but you need to just take it a day at a time for now and read them when you feel ready for them.
I have asked several questions on the site and find that replies and support from others in the same boat are extremely comforting, often when you are feeling very fed up and lonely and when you don't want to worry your nearest and dearest- again!
🙂
Helen

[tomParticipant]

Hi Denise

Sorry to read about your Husband but a warm welcome to you Both.

Yes its a lot to take in after you have had MM for some time let alone after such a short time.

If you need to ask and am sure you will ask away not forgetting their is no "Daft/silly" questions

Love
Tom "Onwards and Upwards" xx

[DeedeeParticipant]

Thanks to Min, Helen and Tom for the replies.

I do realise I am on a massive learning curve, been back into hospital today, Mike now has Oral Thrush and found that he is allergic to one of the antibiotics.
Bless him on a diet of yogourt and jelly until he feels a bit better.

Thanks for the help and advice, appreciate it.
Dee

[DeedeeParticipant]

Min
I have just read some of your posts and are humbled. I am so sorry to read your news and do wish you some time to find some peace and space.
I welcome any help from you as you have been there before me, I know I might tread in your footsteps but will not give in, will always support my lovely husband while I have him with me which I hope will be for a few years longer.
Thank you and wish you all the very best
Dee

[brochoParticipant]

Hi Deedee and welcome now that you have found this site and all the lovely people on here you need never feel you are alone in living with myeloma At first its so hard to come to terms with myeloma and everything it means , let alone all the medical terms and treatments but in a short while it will all start to make sense Just take it a day at a time and try not to worry too far ahead In time life with myeloma becomes normal as you find your own way to deal with it. I hope Mike gets over his infection quickly , oral thrush is quite common but easily treated He probably wont have much of an appetite for a while, my advice would be to give him smaller portions at meals on a small plate as it doesnt overwhelm you Deedee make sure you look after yourself too , in many ways you have the hardest job I think its easier being the patient most of the time . I shall look forward to your posts Best wishes Bridget

[eveParticipant]

Hi Deedee
Its all a bit mind blowing at the moment for you,but things will settle down,Its hard when they have been so fit,and now they seem so ill.
Thing will get better,and you will find that inner strength that you need.

I find it helps to find out all I can about MM it works for me,when things seem to be heading in the wrong direction,I try to learn everything,and people on here can give you support,we have all been there as carers or patients,it does effect the whole family,but the only people who understand is the people who are living with Myeloma.

Food and fluid is the most important thing,sleep when the body needs it,and be aware of any the symptoms on the card they give you,and do not worry about phoning hospital,my husband was terrible not telling me when he felt ill caused big problems,and he was h e l l to live with on Dex,come to think about it he still is.LOL but he does know better now. EVE

[DeedeeParticipant]

Hi again, and thanks to Bridget and Eve for great replies.

I am getting some great advice here, I think my biggest lesson is not to panic. When I had my cancer I never panicked, but looking after Mike I tend to, is it this feeling of being a carer, and responsible for someone else, in my case I think it might well be ???

Anyway, he is doing OK, the UTI under control, thrush nearly gone and just got to get him a bit stronger now.

Thanks again to you all, and will keep posting.
Deedee

[GillParticipant]

Hello Dee

Welcome from me too I am pleased that your husband seems to be a bit better.

It is a huge shock to receive the diagnosis. Stephen was 53 when he was referred to an orthopeadic (sp?) surgeon to try to helpe with what was thought to be a trapped nerve in his back.

We had never heard of mm. He had been a builder all his working life so back problems were expected. Not cancer.

Do stay posting and getting support and information on this site.

Best wishes Gill

[mhnevillParticipant]

Hello Dee

Glad to hear that Mike is feeling a bit better. The trouble with Myeloma is that none of us will have heard of it before we were diagnosed. I agree that getting as much knowledge yourself is very enpowering. I find the Myeloma beacon Site (USA) very helpful – they have links to interesting videos.

Another thing to keep in mind is that prognosis is so much better today than even a few years ago.

Very best wishes to you both.

Mavis

[tomParticipant]

Hi Deedee

How are things going these days? I have not been on for a bit so am just doing a "Catch Up"

Love

Tom "Onwards and upwards" xx

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