My Journey with MDS

Welcome to this website

Diagnosis Day – 8th August                                                                                                                                                                                                                                                                                                                                                                                                                                     I was diagnosed with MDS on 8th August 2014, which came as a shock to both Sally and myself. I have decided to set up this website as a way of recording my journey and hopefully to provide encouragement and support to those people who are on their own journey or will be in the future. I will add more about my journey from August to New Year as the website develops. 

Admission Day - 3rd May 

On 27th January 2015 I had an appointment with my transplant consultant at University Hospital Southampton. In essence there is a good match available. So we appear to be working to May transplant possibly June. More info in the blog. We now know we are working towards potential admission in 3rd May - just when Cate is doing the Isle of Wight challenge

Discharge Day - 9th October                 

So after two transplants and 5 months 6 days I have finally managed to get to the point of being discharged, after what can only be described as an incredible roller coster ride through highs and lows. But thanks to the dedication and skill of the fantastic multi disciplinary team at the Bone Marrow Transplant Centre in University Hospital Southampton, they have been able to get me though this.






Progress albeit slowly

30/11/2015 21:00
Apologies for the delay in updating the blog, I have had a few weeks of feeling less well, due to a combination of infections and fatigue. CMV did it's bit in this and as I set out in the last blog I had baby baxter in addition to oral medication to...

Mixed news

08/11/2015 17:11
Well after a relatively quiet week for my third week at home, I've had quite a rough week. My CMV really decided to jump out of its box, they also think this has impacted on my blood readings and I needed a blood transfusion on Friday. Anyway as...

Second week at home!!

25/10/2015 20:09
Just need to start with a reminder that today is  international  MDS awareness day which is important given the lack of knowledge about the condition. I recorded a 20 second piece for MDS which appeared on facebook page and twitter...

Lovely being at home

18/10/2015 16:36
So I have now been at home over a week, and am getting back into swing of it, can't say I miss 2am observations! Having home cooked food and cakes has certainly helped my appetite improve. Just pottering around the house is more exercise that I have...

Can you believe it - writing this from home!

09/10/2015 00:00
So after two transplants and 5 months 6 days I have finally managed to get to the point of being discharged, after what can only be described as an incredible roller coster ride through highs and lows. But thanks to the dedication and skill of the...

Improvement Continuing

01/10/2015 13:56
Last weekend I had two afternoons at home which illustrates that I continue to improve. I had a great time and enjoyed Sally's home cooking - after almost 5 months the good hospital menu becomes a challenge. Highlight of the weekend besides spending...

Beginning to show some improvement

22/09/2015 16:08
  Well it was a difficult beginning of the week, but slowly improved. I was a bit down to say the least at the beginning of last week, which even if I say so myself has not really been me.  Started a new drug for CMV on Thursday ( twice a...

4 months today !

03/09/2015 16:15
I am sorry for followers of my blog for the delay in writing it but I have been pretty unwell at the moment and Sally is typing this on my behalf. The CMV virus has taken it's toll and everyone is working flat out to get it under control. The...
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Have you got a London Marathon place - can you consider MDS as your charity please

01/10/2015 13:54
Very soon people will be finding out if they have got a ballot running place in next years...

Well Done Bracknell Forest Flyers

16/06/2015 17:11
  Well done on Sunday -That was brilliant!  A massive well done and thank you to all of...

Isle of Wight Challenge - Well Done + pictures

10/05/2015 13:14
Well done to Cate and team raising 5k for MDS

Bracknell Forest Flyers: Fundraising for MDS

26/04/2015 20:26
We are the Bracknell Forest Flyers.  By day we are employees of Bracknell Forest...

Cate + IoW challenge ....... in St Bede Newsletter

01/04/2015 22:21
St Bede Primary School HSA   On Saturday 2nd May, four St Bede mums will be walking...

THE WAY BACK TO WORK - New Anthony Nolan Publication

05/03/2015 20:03
Anthony Nolan have produced a really good publication on getting back to work after a stem cell...

My wonderful sister-in-law is raising funds for MDS doing the Isle of Wight challenge 2/3 May

05/02/2015 13:44
 Isle of Wight Challenge, 2nd – 3rd May, 2015       Our first Ultra challenge...

Well Done Lynne !!!!

01/02/2015 18:26
Congratulations on achieving the Dryathalon and raising over £700 from work colleagues, family and...

My colleague Lynne is doing the dryathlon in aid of MDS + promoting stem cell donation

15/01/2015 21:01
    See Lynne's fundraising page at:...

Key Links and Support

MDS Patient Support Group

31/12/2015 00:00          MDS UK Patient Support Group supports patients with Myelodysplastic Syndromes (MDS). Support, information, awareness, campaigns for MDS patients & families.

Delete Blood Cancer

01/01/2015 00:00 Delete  Blood Cancer DKMS leads the fight to delete blood cancer by empowering people to take action, give bone marrow and save lives

Leukaemia and Lympoma Research

01/01/2015 00:00 We are a UK cancer charity dedicated to supporting people affected by leukemia, lymphoma, myeloma & other blood cancers. Find out about our charity here

Leukemia Care

01/01/2015 00:00  Providing support to anyone affected by blood cancer

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