Moderator: Steering Committee
- Posts: 249
- Joined: 20 Nov 2008 14:05
the lovely Winnie, (or Red on this forum) could do with a little virtual group hug here.
Living on her own with MDS is currently getting her a bit down - as she is grappling with the weight of the Watch & Wait MDS situation - having been diagnosed not that long ago.
Please do tell her she is not exactly on her own - as we have lots of readers and contributors to this forum now.
And Facebook people too - 403 of them exactly.
Do feel free to leave messages here, send her private messages, arranging to chat on the phone (by private message only please).
I took this slightly unusual step of writing this message, as I know she might not do it herself at the moment - but know she'll benefit greatly from hearing from you all.
For any queries:
Call 0207 733 7558
Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
- Posts: 335
- Joined: 01 Nov 2010 17:54
i know quick to reply but i have early warning on this topic hope your feeling good today i have read a couple of your posts 1 earlier today i believe although i do not have MDS i was told i had since 2008 till march of this year confusing yes me too i have been a member of this forum since december 2010 and it has been a great help to me esp on those down days nice to read others know how your your feeling .....i shall pm you soon just for a chat you dont have to reply but it may help
just a Hello for now
- Posts: 4
- Joined: 11 Jul 2013 13:06
Sorry to hear that you are going through this whilst living on your own. That must be really tough. I also don't have MDS but my husband was diagnosed earlier this year and is on the watch and wait system also. At first, I was just really glad he wasn't at the stage where he needed treatment but then after a few weeks it started to feel as though he had this horrible sentence hanging over him and I couldn't just feel glad about the health he still had each day. I am still grappling with it but I am trying to take a day at a time and again try to be glad for the health he has each day.
I hope you get some messages from people who are, or have been through what you are experiencing now and that you feel much better soon. Take care of yourself and very best wishes. Emily
- Posts: 75
- Joined: 04 Mar 2013 13:01
- Location: South East England
I hope by finding this wonderful support site you will not feel so alone. My husband has CMML but I had cancer a few years ago so I understand a lot of the feeling that come with a cancer diagnosis.
For myself I found reading a book called Finding the Light in cancer's shadow by Lynne Eib, a helpful (although religious) comfort, I would recommend it even if you are not religious. Lynne back me a boost when I felt at a real low.
It's hard for others to understand what you are going through, being told to be positive etc is often not helpful.
You have to learn to be nice to yourself! I joined a WI group and got a bit busy, but still being careful about my energy levels, that distracted me no end.
I hope you feel better soon.
Best wishes and hugs
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
- Posts: 67
- Joined: 22 May 2013 14:25
My GP has been wonderful, I am now on treatment for my water works infection and short term he's given me something to help me sleep. He's also referred me to the Macmillan support nurse (actually It's not called Macmillan in Somerset) Last night was the first time I've slept in ages. The Hospital too were very supportive and have put me in touch with the Penny Brohn Cancer care. They have centre all over the country. website: http://www.pennybrohncancercare.org
I have an appointment for the 27th August.
Thank you all for you well wishes and support.
Life is for living
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