The Cow Whisperer
Posted by

Watching a MDS sufferer

The Cow Whisperer
Posted by
21 Jun 2016

I've always wanted to write down the feeling of watching my mum suffer with MDS and today's results have made me start to blog

My mum aged 55 was diagnosed with MDS with refractory anaemia. That was 2 years and 2months ago. Our whole family life was turned upside down. 

In true family style we just got in with it. 2 doses of chemo and a stem cell transplant all passed by and mum was in good shape. She was in remission and things were looking up

we got the news about a year ago that the disease was back and that she had 2 dodgy chromosomes she would never be cured and they would do everything they could to keep her going for as long as possible.

today we received the news that her time on treatment is up. 3 & 1/2 months to live.

so now I'm sat here blogging about it. I've read many blogs and heard many stories all from the patients point of view but I felt I needed to blog about being in the situation looking in as such.

we're not a family to talk about things and we keep our emotions to ourselves. But I have to look to the future as such. 

You always grow up thinking your parents will be with you forever and they'll watch up grow up, get married and have children. Yet I've just had the latter snatched away from me. I suppose I am lucky that my mum has seen me get to 27 and see me achieve me many things. On Monday I'll have been married a year and feel blessed she was part of that. 

How are we supposed to carry on for the next 3months or whatever we have with her knowing that each day is a day less with her

i do apologise to anyone reading this for such a negative first post to my blog but hey I need to start somewhere and today was the start of that



I'm so sorry to hear about your Mum's situation. Reading your blog reminded me of our own discovery that my Mum's cancer, too, was terminal and that no active line of treatment would be pursued.

It's a bitter pill to swallow and no words can ever really truly prepare you for what's to come or make you feel better. However the important thing to appreciate is that help and support is out there and available to both you and your mum and you shouldn't be too proud to reach out for it should you feel you need it.

Our colleagues at Marie Curie are the best first port of call as they specialise in helping patients with terminal illness and their families.

Macmillan also have an excellent section on end of life on their website that covers everything from dealing with the news to practical support and services that can help you and your mum make the most out of the time that you still have together. Here's a link:

We're also here to lend a sympathetic ear and point you in the direction of any additional support or information that might be of use to you. Our support line team are on hand Mon - Fri from 10 am - 4 pm but will always get back to you within 24 hours if you call outside of these times. You can also email the team at any time at

In addition to all the help and support that is available to both you and your mum the most important people in the weeks and months ahead are your mum's treatment team as they will be responsible for managing her palliative care and ensuring the balance between managing her pain and enjoying the best quality of life that she can have.

I hope all this information helps and want you to know that everyone at the charity is thinking of you. In a personal and unofficial capacity I'd recommend that you plan to do some really nice things with your mum has the energy and make the most out of the time that you have left with each other although I'm sure that you're doing that already.

We also found sharing out responsibility for telling friends and family about mum's change in circumstances helped enormously and that by being open and honest and accepting others help we were able to concentrate all our efforts on ensuring she enjoyed the best end to her life as possible.

I really hope all this helps and think that you're very brave in venturing out and writing a blog about how you're feeling - that in itself is a good first step towards coming to terms with the news and the path that now lies ahead.