[susieParticipant]

Hello David. Welcome. I’m sorry you have found yourself needing to join this group, however you will find a super group of people and lots of support.

I don’t think I am wrong to say that Macmillan can help you with financial advise and what you maybe entitled to. Give them a try.

Meanwhile I do hope things go well for you

Susie

[susieParticipant]

Hi Jane

Yes I did have a bone marrow biopsy when I was first diagnosed, so thats 2 yrs ago. It was 2-3 %
so well under the 10% mark for smoldering as I understand it.

Quite frankly its not the disease I dread, its having my life taken over by hospital appointments, doctors and treatment. That is what would drive me round the bend.

I hope all goes well for you

Take care

Susie

[susieParticipant]

Hi Karen

I can well understand you rush out of consulting room. It comes as such a total shock. I have carried on as normal over these last 2 years, understanding that very few MGUS proceed on to become active Myeloma, so haven’t worried. But now i am beginning to do just that. It’s like sitting on a time bomb isn’t it.

Keep well and I hope you remain stable.

Kind Regards

Susie

[susieParticipant]

Hello Karen

I read your story with much interest. Would you mind telling me what reading your paraprotein was that put you into Smouldering. I have MGUS and my last bloods showed a PP of 36 but my consultant has only increased my check ups to 3 monthly from 4.

I wish you the best and hope all goes well for you.

Susie

[susieParticipant]

Tom and Ted
Thanks for replies. In answer to your question Ted, I get my bloods done a week before my consult, which I now have by telephone. As I said in my first post,when you have arthritis it is hard to know when pains are just due to that. I’m due bloods next month so I’ll wait till then before worrying.
Good Wishes to you both
Sue

[susieParticipant]

Hi All,

Love the new website except for one thing, I’m missing some of the page on posts on the right side. It’s obscured and I don’t know why,so I can’t read all of the posts. Has anyone else had this problem.?

[susieParticipant]

Hi Alison
If it helps you to remember me, you did come to my retirement do at the Harvester about 3yrs ago.I retired about a year after that "big move" we all had to bear. Obviously it would be unwise to put my surname on the web but I hope your memory is now jogged.
I gather you're back at work now. How are you in yourself? I do hope you are feeling more like the old you now your treatment is over.
Keep in touch
Best Wishes
Sue
Ps I still live in a village outside Wycombe

[susieParticipant]

Hallo Alison
I was so surprised to see you've had cause to join this group. I'm sure you'll get all the support you need from these super people.
If you're wondering who I am, I used to work with you at that marvellous estabishment in chalfont st peter before I retired.
I'm so much better off than most on here as I only have MGUS so am being monitored 4 monthly.
I do hope things go well for you. Maybe we'll meet up at a "do" sometime.
Take Care
Sue

[susieParticipant]

Hallo Everyone
Great news. Its MGUS. My marrow only showed 2-3% plasma cells. So its just 4 monthly monitoring.
Thank you for being there
Susie

[susieParticipant]

Thank you Helen.You described the feelings to a tee. I'm feeling a bit calmer today, it seems to catch me when I'm not expecting it. Keep saying to myself what will be will be. I get my results on Tuesday and my sister is coming with me. She had breast cancer 12 yrs ago so she knows the ropes with this sort of thing.
Thanks again, I'll post results as soon as I can.
Luv
Susie

[susieParticipant]

Hi All
Hope you don't mind my rantings but I've only got a few more days till I get my actual diagnosis and I've got the real wobbles. In fact to be honest I'm s**t scared. I'm just hoping with all my strength that it will be MGUS or smoldering. Sorry to be such a wimp but I can't help it. The thought of my life being taken over by drugs and never ending hospital appointments fills me with total dread.
Keep your fingers crossed
Luv
Susie

[susieParticipant]

Hi All
I just wanted to thank you for all your replies.
I had the bone marrow done yesterday and had no problems till I got in car today. The seat seemed to hit the spot and its been really painful since. I have taken some paracetamol, it has taken the edge off. Hope it wont last too long. It feels like i've been kicked in the bum by a rather large horse.!
Keep up the good work
Susie

[Author]

Posts