[tracey1155Participant]

I know what I just put sounded really selfish, my husband has been diagnosed with myeloma December 2104.

There doesn’t seem to be any help out there apart from myeloma uk?

Am I right, we were told from the specialist that he had myeloma, and have had to research the web to find out what it means, no help seems to be provided to us at all from the doctors.

My husband is always tired, he has a problem at the moment walking because his ankles swell and ache, but he doesn’t know if this is anything to do with his myeloma or just something else.

can anyone help or advise, he has been sent a letter to say the X Ray he had just before Christmas has come back inconclusive (what on earth does this mean) and he has to have an MRI scan tomorrow.

If someone would help him to understand what symptoms he should be looking for etc, it may ease his mind.

As his wife I spend most off my time crying and wondering why him, as I stated before I am not coping at all, and really need to be there for him, he is 53 on Monday and I would love to think off many more birthdays ahead but at the moment I can’t.

Please can someone help with any advise or help with symptoms etc, we would be so grateful as I feel worry is only making things worse.

kind regards

Tracey

[Anonymous]

Hi Tracey, you have come to the right place, there should be lots of people who will point you in the right direction, I was only diagnosed in October 2014 with aysmptomatic myeloma and just been able to access this website has been a great help so too have the myeloma nurses contact with them is easy and they reply quickly so contact them as well to help ease some of the horrible stuff that will be whirring through your mind.

What I have found is comfort in knowing that it’s not all doom and gloom, people on here are honest with their replies to what is happening to them but it seems to be a strange illness in that we are all different I for one could be classed as MGUS because my paraprotein in only 8 and I have no other symptoms but because I was 49 they ran some more tests in my bone marrow biospy and that showed that although that is only 2% of that 2% …92% show myeloma traits so that makes me asympotmatic but then consultant says there is a one in four chance that that will be how it stays they just work with you and monitor you

. So chin up when the moment lets you and in the other moments just go with the flow of tears better to release that tension.. A friend sent me this today…no point stressing over something you can’t change move on and grow strong..just what my consultant at Leeds said ..look after yourselves. Sending you a big hug and positive thoughts for your hubby.

helen x

[bandityogaParticipant]

Tracey

I couldn’t cope when my husband was diagnosed and I was .prescribed diazapan from my gp which took some of the anxiety away. You will calm down and cope. It is now over 2 years since my husband was diagnosed and our first year was horrendous as he had spinal compression. My faith helps me.

Stay positive and talk to myeloma nurses and Macmillan nurses at hospital should be helping you. Try to find out as much information as you can on your husband’s bloods, paraprotiens or Free light chains.

Maureen x

[tracey1155Participant]

Thank you xx

[valgrebezsParticipant]

Hello Tracey, Sorry a bit late in replying to your question but my husband Peter is the patient so I understand how you feel. He is presently in hospital with slight (slight, what does that mean), Pneumonia. Also, he hates hospitals and the boredom. Funny thing is that I can’t cry, only rarely, wish I could as it all seems to be inside me, stopping me sleeping etc.

It’s a long haul but this site and the Nurses are extremely good and will answer most of your questions. It is scary though, as most of us had never even heard of it. Peter’s Chemo was cancelled yesterday as he was not well enough and when I looked at him yesterday he has aged in the last few months. I also didn’t realise that when Chemo starts to destroy the immune system, Pneumonia can sometimes (not always) just happen. I just hope that this isn’t the start of infections or complications as he has coped brilliantly, but how they cope with it themselves, I just don’t know.
I get exhausted, waking up at 3 or 4am, calling paramedics etc yesterday he woke me up at midnight, couldn’t breathe properly, paramedics, ambulance etc, no sleep. I just felt ‘spaced’ out all day, hadn’t eaten, couldn’t make visiting hours last night, only in the afternoon. But, they must be very scared. Please just take one day at a time Tracey I’m sending all my love and try to be strong for him as everyone says on this site. Not easy but you can do it. Val xx

[tracey1155Participant]

oh my gosh poor you and your husband my heart goes out to you, thank you so much for your reply.

I know before this we never knew about myeloma, its terrible really we so need more advertising.

the more we get the better the message gets out there and we can get help.

kind regards

Tracey x

[scott9Participant]

Hi Tracey

Your husband will have plenty of birthdays ahead of him, dont you worry about that. I’ve been living with this for nearly 5 years now. They are always bringing out new chemo things so the average life span continually stretches out. What you need to do now is focus on each day and treat every one as a bonus. Make the most of every day and enjoy them. Life is now too short to be miserable.

Get fighting.

Scott

[jmsmythParticipant]

Hi Tracey

I’m not on the site much but came across your post. My husband was diagnosed September 2006. I went to pieces .- I cried most of the time but I was referred to a therapist. It took time but I eventually it helped me. Frank had a STC transplant in March 2013. It’s not been easy but he is in remission (thank God) and we try to live each day as it comes. Frank has up and down days but we still manage to enjoy life – we have just come back from 2 weeks on Lanzarote. Ellen and Maggie – the myeloma nurses on the site are very good and will explain anything that you are unsure off. When we visit the consultant I have a list of questions prepared and I record the answers – I very a terrible memory. Hope things get easier for you – take time but you will always find help and support here. All the info that you need is here. I searched the Internet in 2006 and it scared the life out of me and then I found Myeloma UK

Take care
Jean x

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