Hi I’ve recently been diagnosed with Myelodysplastic syndrome ('MDS'), I have been given a timeline off approx three years and I am currently receiving injection fortnightly to boost my HB. I thought I would join the forum to hear similar stories.
3 Likes
Hello @Gaz0510
Thank you for taking time to send your post into the forum
I am sorry to learn about your diagnosis - my heart goes out to you
There are lots of people with recent diagnosis - for various types of blood cancer - and I have set a link below that I hope will help:
Living with blood cancer such as leukaemia, lymphoma, myeloma or any other type can be challenging, but there are a few things it may be helpful to keep in mind.
- It’s normal to go through lots of emotional ups and downs. However you feel, it’s OK. You’ll probably have good and bad days, and you won’t be the only one who feels like this.
- There are little things you can do to feel better. Recognising and acknowledging your emotions, being kind to yourself, trying mindfulness exercises and staying active can all help. There is also professional help out there if you need it.
- You don’t have to go through this alone. We’re here for you. Join our online community or contact our Support Services Team to talk to one of our nurses. We also have information to help your family and friends
Please remember you can always call us for free on [0808 2080 888](tel:0808 2080 888) (Option 1) to speak to one of our Support Service Nurses in confidence.
Our phone lines are open:
- Monday, Wednesday, Thursday, Friday: 10am – 4pm
- Tuesday: 10am – 7pm
- Saturday: 10am – 1pm
- Sunday and bank holidays: Closed
Alternatively, call us anytime and leave a message and we’ll get back to you within one working day.
Please do feel free to let us know how you get on
Take good care..
Kind regards
Mike
2 Likes
Hello @Gaz0510, welcome to the Forum. I’m sorry to hear about your diagnosis, and I’m glad you’ve found us. It’s a lovely community here.
We’ve a page that might help with information on living with Myelodysplastic syndrome ('MDS') day to day, alongside some patient stories from others who’ve been where you are: Living well with MDS. It also points to MDS UK Patient Support Group, a charity specifically for Myelodysplastic syndrome ('MDS') with their own support meetings, if you’d like an even more targeted place to connect.
I’m also going to tag in a few members here who’ve been through an Myelodysplastic syndrome ('MDS') diagnosis themselves, in case any of them feel able to share a bit of their own experience with you. To those I tag, please don’t feel any pressure to reply if it’s not the right moment, but if you are able to, I know it would mean a lot: @twohorsepony, @Lucca ,@paulstass.
Keep posting whenever you need to, and take care,
Ceri - Blood Cancer UK Support Services
5 Likes
Hi, I have also recently been diagnosed with Myelodysplastic syndrome ('MDS'), although I’m currently on “watch and wait”. The emotional roller coaster as you try to come to terms with it is tough, it’s a strange one, with there being no cure. Take care
Hi, thank you for your response, it’s good news that you are being monitored. It is a shock at first but i know someone who was diagnosed over eight years ago and has had a stem-cell transplant as well as having problems like me with his lungs. I believe that they are making progress with Myelodysplastic syndrome ('MDS') diagnosis and hopefully we will hear of maybe not a cure soon but more assistance with prolonging life
Hi hope you are doing ok. I was diagnosed a year ago with single lineage Myelodysplastic syndrome ('MDS') low risk with 3 mutations , I am under a centre of excellence ( Kings) and I found the Myelodysplastic syndrome ('MDS') Patient Support Group enormously helpful.