[feaseyjaneParticipant]

Hi Lesley
Thanks for your lovely message

I am sure I will start my treatment in April,as I mentioned to the consultant that the week leading up to Easter was special to me.,and we have so much going on.Unfortunately we just ran out of days and months to book a holiday.

Isn,t this site just wonderful.I know what you mean the reason why we are here,but,at least we are all one big family.
My girls have been just wonderful,like yours and the more wicked the " sense of humour" the better.

Take care Lesley

Jane 🙂 🙂 🙂

[VickiParticipant]

Hi Jane

Sorry to hear your news 🙁 , my partner Colin was diagnosed in October 2011 after having what we thought was a bad back ha ha! He had an sct in November 2012, after having 7 cycles of rcd (revlimid, cyclophos and dex). We were really scared to begin with and wondered how the heck we got here! It's amazing how many people have to though, we went from never heard of it to this person and that having it!

It is a rough ride sometimes and Colin had quite a few infections but the medical teams are so skilled and knowledgeable they can soon put it right 🙂

Good luck to you and if we can help please ask 🙂

Vicki and Colin x

[feaseyjaneParticipant]

Hi Vicki.
Thankyou for your lovely message
Do you know,like you said,I knew if one person having myeloma and all of a sudden your surrounded by it.
Unfortunately my daughters mother in law was diagnosed in oct 2012
I read all the info there was to read and then bang wallop here I am.

I hope Colin is recovering as well as can be expected.

Having a bit of a downer today,trying to stay positive all the time is hard
I haven,t even started my treatment yet either,so I had better get used to it I suppose.

Well Vicki will be in touch
Take are both of you xxxxxx:-(

[tomParticipant]

Hi Jane
Sorry you are having a "Downer" you will have a few of those am sure :-S I do and i find (even as a mere male) that its better to cry in the shower :-0 , Yes i cry and yes i do it in shower its good for me so it might be good for you??
Its a rough rough road you are going down I have done that road and had a few bumpy bits but it has all worked out well 😀
Keep strong Jane and shout if you need any advice and if you just want a moan feel free

Love Tom Onwards and Upwards xxx

[mhnevillParticipant]

Hi Jane

Sorry to have to welcome you. How wakeful for your daughter to be having to cope with the dreaded MM twice – unbelievable.

No one has said much about the side effects of CDT so I thought I.'d add a bit.

I had six rounds. I had no side effects from Dex, but did find food tasted really strange. I found I preferred things with strong flavours. I didn't lose any hair while on the drugs, but it went very thin afterwards. I'd recommend lots of conditioner and some products called "Aussie". It took me about three months to get anything like normal. The good news is, I am in remission now. I am not going down the route of an SCT because of my age and other health considerations. However, if you do, there are lots on the Site who will given you good advice.

Yes, keep positive and be kind to yourself. You must have said something like this to your patients, now it's your turn to look after yourself.

Love from Mavis x

[feaseyjaneParticipant]

Hi Mavis ,
Thankyou for your lovely message and advice
It feels strange to be on the other side I must admit
After years of comforting patients and their families ,I am now one of them
So glad your in remission,do you feel back to your old self,or do you feel different
My hair is very fine anyway,lol, so I reckon I will have to wear a wig anyway
I expect this coming Wednesday I will be fitted up for one.(Thick hair at last )
Trying to cram everything in when I have the strength, before the chemo starts
Mmmmm strong flavours, does that mean curry?
Will buy plenty of comdiotioner then and iAussie treatment.
Like I said earlier trying to remain positive 24/7 is hard but the sun is shining again today and I have a smile on the old chops lol
Sorry my sense of. Humour isn,t everybody else's
So thanks so much Mavis will post as and when things occur
Take care And thanks for the invaluable info

Jane xxxxxx 😀

[eveParticipant]

Hi Jane

Welcome to the club, it's my husband with Myeloma and he is 2years down the line,nice to hear you have a sense of humour,I think it will hold you in good stead as your treatment progresses.

I have a sense of humour,sometimes near the mark,but I think if you did not laugh about something you would end up crying,as you get to know people on here,you tend to she'd a few tears,although you never meet them.
They are a good bunch on hear,so if you are worried about any thing or just want info,or you can give us some help or info do not be shy,and post. Love Eve

[AliParticipant]

Hi Jane

Sorry you are having a down day, I feel you have every right to one every so often.

My Mum was so worried about losing her hair, this didnt happen until she had her high dose chemotherapy prior to Stem Cell Transplant. When it happened she had "got her head round it". So im sure you will have several months to sort a wig out. She received many compliments about her "new" hair, by people who didnt know. We ordered it from the internet from a company called Banbury Pastiche. We ordered loads and sent the ones back that were no good 🙂

Just to let you know, the treatment was not as bad as Mum had imagined it would be and she coped really well.

Love Ali xx

[feaseyjaneParticipant]

Hi Eve

How nice to speak to you at last lol
Well I did try 3 times to access this site and thanks to you here I am, on the right site
I hope your husband is responding well to treatment,

Having a good day today my wicked sense of humour will shine through
Now Eve do i stay on this site of do I move help help

Have been thinking how to finish my messages like Tom does

What do you think to song titles

Like when the sun is shining I could add a sun theme
Hope that its not too macabre Eve

Take care
Jane xxxxxxxxx

[tomParticipant]

Hi Jane
Well you have met Eve now Tut Tut Tut your life will never be the same am pleased to tell you that young lady is that near the knuckle I have no skin on them and am on light Dutie's lol.
You add what you feel to end your posts.
Take Care and stay well

Love Tom Onwards and Upwards xxx

[sharonboyleParticipant]

Hi Emma
just wondering how your mum is doing and is she home or in hospital, mine about to start cycle four but has a chest infection at the moment so hope it willnot stop the treatment.H as your mum lost any weight mine has lost over a stone despite eating fairly well just wondered if the drugs did this

[EmmaParticipant]

Hi Sharon I'll reply on my other post 'ah so this is dex' so as not to intrude on Jane's post. X

[eveParticipant]

Hi Tom
I just say it as I see it,and people should not ask questions if they do not want answers. I think coming from Liverpool is the reason people seem to be more blunt and take bad news and turn it into a lighter thing,it helps people to talk to you about it.
I do find my sense of humour does get me in to trouble down south,as I have aged,I have subdued it.
Jane you can use any of the sections ,I just suggested that you post your first in newcomers because when some comes on in the middle of someone else's topic people do not know who they are,I did the same as you,and I think it was Gill, opened a Topic who the hell are you,we had a lot like me who did not introduce them selfs,also Jane you might get into under 50 if they let Tom in,at57 you should get in. Love Eve

PS anyone feel like starting another Who Are You???? I've, lost touch a bit on who,s who

[feaseyjaneParticipant]

Hi Ali,

Was on a downer slowly coming back up.
In answer to your reply when I have to wear a wig at least I,will be saving hours spent on doing other things so that is a massive positive.

The sun is shining and it is lovely and warm today.Happy Days xxx

[feaseyjaneParticipant]

Tom has warned me about you Eve lol
Also if Tom can get into the under 50,s so can I.
My sense of humour has also got me into hot water many a time.What I think Is funny other people don,t
Who gives a Damn. Now am I allowed to say that on here.lol

Well actually I am thinking Eve ,to give Tom a lovely nickname on here.
Only been on this site for a short time,but love chatting to you all.

So back to You Tom ,how about mmmmmmmm happy Tom.yep that will do.
So when I write it will read Hello happy Tom.
Got the devil in e today ,well the sun is shining in Northampton

Take care all
Jane xxxxx8-) 😎

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