[GillParticipant]

Oh you rotten lot! I have only just picked up on this thread and am so moved by everybody's thoughts that it is hard to see the keyboard through the tears.

I too would like to say thank you to everybody on here for support, encouragement and some smiles.

Love from Gill xx

[keenParticipant]

Hi Gaye, like the others I was moved by your 'thought'and have been encouraged by your posts. We all hold you in very high esteem. When I was first diagnosed last January I did not name my disease to anyone except my immediate family and one couple, our dearest friends. I did not want to face the perception the word cancer engenders in people.I just said I had a blood disorder and whilst not curable,was maintainable as that was indeed what I was told. It helped me cope and it helped my friends cope, although as I recovered and got back to looking myself many friends confessed how they had feared for me. Apparently I looked pretty rough! I don't mind so much now and if anyone asks point blank I tell them. Sadly the protein has returned so I am now on Velcade,so far so good but it was a shock it came back in just about a year. I just hope that is not ominous!Love and best wishes to everyone. I agree with the comments on how great is this circle of friendship and support. Sylvia

[GayeParticipant]

Hello Sylvia – Thank you for your response to this thread and your lovely words. I somehow feel I can empathise with your situation because when I relapsed the first time I was just devastated. I had 18 months of remission first time round and then 1 year the second. Just when you feel your life is back on stream something else bites you on the proverbial bottom.

I think how you dealt with it when first diagnosed was brilliant. Many people seem to mistake melanoma with myeloma which isn't very helpful, but it seems you got full understanding and love from those who really matter to you. Also you seemed in control of how you wanted your diagnosis to be received. Well done Sylvia – the girl done good!

I hope so much that the treatment goes well so please keep us up to date.

Good luck and love, Gaye xx

[tomParticipant]

Oh Gaye I think?? no I know we all have the "Onwards and Upwards" streak running through us 😀 , we just need to look at the Positive Posts that are on here 😎

And Many great Posts are from yourgood self Gaye and for that I thank you 😀

You make me smile you make me laugh and in this cold weather that a good thing :-S

Once again from one "Onwards and Upwards" MM.er to Another "Onwards and Upwards" MM.er

Lets stay out of the Closet 😎

[keenParticipant]

So your post is finally here! I got onto my Pc today and clicked the link so that was what was needed. now I know what I am doing! I printed off the email so I could reply but I expect you have seen my earlier posting now.Did you get a good response when you relapsed the second time?I know you are having pain treatment but are you in remission again now? Can I use this post to apologise to Keith, I think I called him Kevin earlier—senior moment! I read earlier Keith that you are pain free, how great is that! Life takes on a whole new meaning, and Spring is just around the corner isn't it Tom? Onwards and upwards! Bridget, please say you are feeling better, I so felt for you when I read your last post! Sorry Gaye using this post but I know you feel exactly as I do towards our friends and only wishing the best for them all. Thank you again for your lovely words of encouragement. Yes, I think the girl done good! Love Sylvia x

[ChrisSmithParticipant]

All, I'm new to this forum lark and I'm extremely moved by the postings which are so supportive of one another.

I have put off 'getting involved' in forums because I think I can cope with my husband's Myeloma without help. How wrong am I? I have recently realised that I'm driving myself nuts by 'coping'and am causing my poor dear husband a lot of worry. We have had some very grim days recently and I often feel there is no future.

Reading Sarah's comments ring so true of our situation with my husband's family – my husband's parents think he's a weakling and should get himself sorted out. His two brothers have visited him only once since his diagnosis last September and that was because they wanted something. The tragedy is his family live about 400 yds away from us and are quick to phone if they want something, but still expect my husband to visit them. He can barely walk, is in constant pain and often feels rough.

But we too have the joy of children and funny, happy grandchildren who visit and brighten our days.

Apologies if I've hijacked your feed, Gaye, but reading that which you and the others have written makes me realise what I've been missing in the way of support.

I wish you all well.

[MinParticipant]

Hi Chris
A very big welcome and pleased you dipped your foot in the water. You are amongst friends and can rely on us to lend you a listening ear when the coping gets too much.
Like you I have a husband with mm and its been a series of fairground rides in the past 18months with lots of high and low points.
I don't have a lot of people who really understand the predicament we find ourselves in but I do find it easier to bare for sharing the experience with some understanding friends on here and reading their problems which often put's our predicament in the shade.
Its like washing away my troubles when I see it on the screen, sort of cathartic, of only it would all go away life would get back to what it was……of course I know its not, but I can dream cant I.
As for the future tomorrow is another day and if you can get through today, you can cope with tomorrow.
As you have seen there is always someone on here with something in common besides the MM.

[brochoParticipant]

Hi Chris welcome I am sure you will get lot of support from all the lovely people on here It took me a long while before I even looked at this site , a form of denial I think Unfortunately not all people even try to understand myeloma but its very sad that your husbands family are so unsupportive . Grandchildren are a special joy arent they , I know a visit from mine can lift my heart even on a bad day Dont hesitate to scream or rant on here if you are need to we have all done it and there is always someone to give you the support you need , I think it must be harder watching your partner go through it than it is for us patients sometimes Take care Bridget

[tomParticipant]

Hi Chris

And am I pleased you joined us 😀 but sorry you had to 🙁

I am sure you will all cope with whatever is thrown at youe and Hubby (sorry you didn't say his name)

Dont forget we have you now so pull up the chair and ask say what you want, we are all here for each other 😎

Tom "Onwards and Upwards" xxx

[eveParticipant]

hi everbody

I would just like to tell you all how helpful I find this site,I never mention my partners name because his daughter does not know!! long story.

It is very hard sometimes I understand his feelings but as a very open person it is hard,he is just the opposite of me.If your can not do anything about it why worry about it!!!!

I feel very selfish we travel a lot in a motorhome we came back from france because he was so ill,and we should have been planning nz to see a daughter,this is so hard because are whole way of life has changed so much,I cannot wait for warm weather to come sorry to ply you with my troubles

[brochoParticipant]

Hi Eve I am glad you find this site helpful ,I know its a lifeline for me .You didnt say how long your partner has been diagnosed but if it wasnt long ago you are bound to still be in shock and trying to come to terms with such a life changing illness But it does get better , life may be different than before but nothing stays the same forever. It is a shame you havent been able to tell your daughters , they would be a support for you both , perhaps in time as you understand more about myeloma you will be able to tell them . Have you got a close friend you can confide in? We all need a friend at times like this Please use this site for advice or just to get things off your mind , we have all been thrugh all sorts of situations , patients and carers alike. Roll on spring the warmer weather makes everything seem better best wishes Bridget

[JetParticipant]

I think what I get most support from and respond to most enthusiastically is not so much the medical and clinical details, especially as every one of us seems to have such specifically individual treatment and experiences, but the more psychological and spiritual aspects of our journeys, so thank you Gaye for sharing your personal revelation.

I am not sure if I am still in shock and denial, but at only 3 weeks in, I suspect that may well be the case. I do seem to be dealing with it all remarkably well after the initial collapse, so I guess only time will tell.

I wonder how much I am striving to be the person all my friends and family tell me I am – open, down-to-earth, ebullient, positive, strong, brave, etc. I think I am those things, but have given myself permission to be a totally scared, incapable, pathetic, child-like creature when needed.

[tomParticipant]

Hi Eve
I also know how well this site feels to me Its like putting on an old pair of shoes 🙂 you know the tatty ones we just wont throw away 🙂

And as for worrying? well I worry about not worrying ha ha.

Does your partner not want to tell his daughter? or is he just waiting till he grasps the MM facts?

As for it changing our lives? yes it has me changed my work/social and Family life, but I have reclaimed more and more of my "Old Life" back and kept some of the changes 😉
I also cant wait for the sun to be burning into my fat neck 😎
Good Luck and stay strong.

Hi Jet

I also am not that interested in my Bloods/pp/erm that other stuff that is found in my bloods:-S am just happy when i go to see my consultant and he has a smile on his face 😀 IE one happy Consultant = one happy Patient 😀

Tom "Onwards and Upwards" xx

[eveParticipant]

hello tom

It is a bit complicated with his daughter,in February she knew he fractures in his back,Then he was told he has mm and decided he would tell her h/term when she said she would travel up.She did not come,and no phone calls since,

My own daughters know and are there for both of us.I feel she should be told but will not go against my partners wishers.I can see his point of view[ no phone calls not interested]The contact only seems there when she needs something.If she rang up I would tell her,but not my place to contact her.

Just feel if we are storing up extra problems,that we do not need.

Any way enough of this,I just want to say tom how much you cheer me up, We are only in the 7day of treatment,and pills have reduced to 15 to day then tomorrow about sevenwithout doctors pills,dexi starts again in four days.

regards to your all and thank you for just being there

[tomParticipant]

Hi Eve

When you say its a bit complicated well dont i know it, and am sure she would want to know? but you know her better than I.

The main thing is for you Both to stay strong and fight this bloomin MM and try not to "Store Problems" I know its not as easy as that :-/

And the comment you made bout cheering you up has left me feeling very humble So as "Tom walks away blushing" he wishes you all a great week end 😉 Lets hope the sun shines for us all this week end 😎

Tom "Onwards and Upwards" 😀

[Author]

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