[BenzParticipant]

This waiting for results….hence no sleep coming easy tonight again.

How did you folks deal with the wait and challenge of trying to keep it together to ensure family and work not too impacted during this time?

Slept ok for a few nights but tonight the old brain is churning and churning plus a bit of a persistent cough is not helping either.

[andygParticipant]

Hiya.
I think you'll find we all struggle with sleep at times. I'm not working so I can nap during the day if need be. Fatigue is also a side effect of mm and you need to listen to your body and rest up when it tells you. Steroids are especially hard on sleep. You need the support of family, friends and work to help through the difficult mm journey.
All the best
Andy

[KevinLParticipant]

The waiting for the results was an awful time as we obviously didn't want to tell the rest of the family until we knew what the news was.

Try not to get too far ahead of yourself thinking about what maybe, concentrate on today and get on with that. The sleeping is a problem as I found my mind tended to race away in the early hours.

Keep as positive as you can.

Kevin

[VickiParticipant]

Hi there,

Welcome to the forum. My parter Colin was diagnosed with mm in October 2011, following a random blood test due to back pain. He went then from test to test, blood and urine with a final bone marrow assessment identifying myeloma due to high amount of plasma. I saw you other thread with test results. I can't really comment on what they mean as I'm not medical but Colin showed no inflammation in his results but did show a signficantly high level of bence jones light chains (31000), and a paraprotein marker of 17 (i understand this pp marker is a real give away to indicate myeloma, so he had the two big markers of bence jones and pp. He went straight on to have MRI scan and treatment, now awaiting a stem cell transplant, but as others will know he has had two failed stem cell harvests so far!

The waiting for results was an absolute nightmare, my one piece of advice is read the myeloma uk website only. Don't read so of the others as they are often way out of date and some do not contain controlled accurate information. The brain does work overdrive and tended to worsen for me as soon as my rad hit the pillow. For coli he was so so tired he used to sleep but it was very fitful. There is no hiding this is a very hard time for you but I would suggest make sure you talk to someone when you are worried….it is right a problem shared is aroblem halved. As the other half of an mm sufferer it is always a relief when Colin wants to talk about his concerns because I can take an opportunity to raise some of mine (once we have sorted his :-)). Take care and take each piece of new information in bit sized chunks and ask lots of questions 🙂

Vicki and Colin

[BenzParticipant]

Vicki and Colin plus you other rascals……thanks for your comments and wisdom.

Unfortunately I am a natural worrier and spend too much time scouring the Internet for information. Does not help

My journey to here started back in May with scrotal lump and generally having more colds than I cared to have. Ultrasound scans of 'bits' and abdominal region led to simple issue easily resolved. However elevated liver enzymes and a young GP simply saying "This is out with my knowledge so will have to refer you to a specialist but it looks like an immune issue…". This led me to self diagnose auto immune hepatitis and go into mental meltdown. Barely functioning. Consultant was great, but ultimately had a liver biopsy and further waiting for a few weeks. Thankfully all ok with the liver at the moment.

It was last blood test by liver consultant which has taken me here. Elevated igG led to serum electro thingy and bence jones test. GP thought results were fine. However liver consultant called at home tonight to say he had seen my results and felt nothing to worry about. I appreciated that.

Thing is I generally feel great but do tend to spend too much time looking for information. Easily accessible information is sometimes good, sometimes not…..head into far too much wrong thoughts!

I have spoken to some colleagues at work. One early 40's but second cancer treatment in 5 years. She was inspirational. Other colleague 3 years post bowel cancer which was initially missed. My own Mum, my wife's Dad (sadly lost his fight). A young neighbour. I would think very few are not touched by the many types.

Wherever my journey takes me I will join you good folks on here to watch how things go…..positively I sincerely hope for all.

I also intend doing what I can to assist in helping those who are faced with issues.. Whether that is simply helping raise money for cancer charities or taking a more proactive support time will tell.

Vicki and Colin…be strong…..fight….challenge….question….love. I wish you both a positive outcome to your current challenge.

Take care,

Scott

[PeterJamesParticipant]

Hi Scott
I was diagnosed MM at the end of May this year, stage one thanks to a sharp eyed practice nurse who took my routine PSA blood test, did a full blood test not just the PSA one, found I was anaemic , as soon as the Doc told me this .
With My family being cancerous i knew I had a problem , which after about three weeks of tests MM was confirmed & my six x three week cycles of CDT with hopefully a SCT in Jan started
On diagnosis ,like you I dashed home & hit the Internet , first one up , prognosis about 12 months left to me , I nearly died of shock there & then , Son pulled me up , saying you never know how old those sites are , seven or eight years ago that was the prognosis, but giant strides in the treatment have been made since then ,
Abandon the web , stick with UK Myeloma , go to a local info day, i am going to the Manchester one in Sept ,also the American site has good write up on latest drugs etc which come to the UK
I am determined as a very positive person not to let this beast take over my life , so I lock it in a box & get on with my life
Some days I do feel a bit off but persevere, do not give up, grab life in both hands
Get to know your nurses & specialist , take list of questions with you & go over every result with them so you understand it
My Wife & family are giving me superb support & my hospital team are first class
I agree with you ,once you are in the cancer club it's amazing how many around you are in it & you never knew
I would guess that I am a lot older than you but I am determined to get to the stage where the Queen sends me a birthday card !
You will find heaps of advice on this forum, not as depressing as old web sites !
The long & short of it , get positive , live your life , just let the MM beast out now & again rather than ruling you 24/7: IE , don't let the b—- r get you down, there is still life out there
Kind regards
Peter

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