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.






Slight change to the plan........

21/06/2015 15:47
Well its 7 weeks ago this afternoon that I came into hospital and this room.  Its been an eventful couple of days for me in the hospital, not helped by having a temperature spike in the early hours of Saturday morning, which triggered the usual...

Next Steps

17/06/2015 15:54
So test results are back and importantly I have not devoloped antibodies against the donor cells, which is good news. The plan now is to go back to the donor for another batch of stem cells. Too early to be clear about timing. Given my lack of...

The waiting game ...........and good luck BF Flyers

13/06/2015 17:50
As indicated last week, transplant did not work and I have undergone a range of tests and had my fifth Bone Marrow Biopsy last Thursday. All of this should come together next week to help consultant and team determine the action plan for next...

Not the news I wanted to hear

08/06/2015 16:43
  In essence my Consultant now believes that all my episodes last week may well be me rejecting the new stem cells, as my numbers have remained flat. The are doing further tests to confirm as well as another Bone Marrow Biopsy this week to...

An even more eventful period ....... bringing you up to date

05/06/2015 11:22
I must start with an apology but its been a really difficult period both for me but really for Sally watching on and helpless to do anything but be here (which in my eyes is a lot!!)  So hot on the heels of the fantastic news that the new stem...

Day +13 - Its been an eventful week or so!!

27/05/2015 15:43
Apologies for not completing my blog for so long, but it has been an eventful week with various episodes of reasonable  moments and dreadful days! As predicted, the periods of flat blood counts following conditioning does take it's toll....

Tuesday - Day minus 2 to Day plus 3

17/05/2015 16:30
Well Day minus 2 is fluid day!! This was to accompany the dreaded Melphalan which made me feel sick and bloated due to all the fluid that was pumped in over 30 hours. Day minus 1 - hurray no nasty drugs but had the hangover from hell from the...

Sunday & Monday Day minus 4 and Day Minus 3

11/05/2015 21:30
Sunday - Day minus 4 Overall a quieter day for treatment today, spent several hours this morning free from "Baxter" now that Campath is finished. Managed a circuit of my exercises. Its actually surprising that I have been here a week now!...
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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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