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.






Friday & Saturday D minus 6 and D minus 5

09/05/2015 12:07
Friday Day Minus 6  Despite the excitement of the general election I still had a good nights sleep!!! It was on TV all day as well so a back drop to the days events. Fludarabine this morning and final session of Campath later today, which I am...

Wednesday & Thursday - D minus 8 and D minus 7

07/05/2015 18:15
D Minus 8 Pretty full on day as I needed some blood and platelets in addition to the medication regime. So was hooked up for probably 22.5 hours (not really counting) to my new best friend "the pump". Still in my unhooked up time did my first...

Monday & Tuesday - Day Minus 10 and minus 9

05/05/2015 16:18
Monday was a pretty rubbish day with the anticipated reaction to Campath ....fever; shivers; high pulse; temperature and sickness. I think that frightened Sally - I was out of it at one point. Combining the various IV potions means that I am almost...

Admission Day today

03/05/2015 10:21
I phoned ward as requested this morning and admission is today around 2pm. So all the waiting is over and the next stage begins. I am grateful to have had so many expressions of good wishes and offers of support for which Sally and I are really...

Well Done to Great White Hope Team

02/05/2015 17:49
The Great White Hope Team undertaking the IoW challenge finished at around 4.30pm this afternoon. Cate Skeat, Sarah Beardon, Katia Pothecary, Verity Penzer, Hazel Hutt and Sue Bunyan completed the event  raising over 5,000 pounds for MDS...

Admission Day - 3rd May

29/04/2015 17:00
Admission has been confirmed as 3 May following conversation with transplant nurse today. Will need to ring first thing to check timing and pre transplant treatment begins in earnest on Monday.  Early start tomorrow as need to be in Southampton...

The Great Wight Hope's fundraising page

29/04/2015 13:00
  Cate Skeat, Sarah Beardon, Katia Pothecary, Verity Penzer and Sue Bunyon are all raising money for MDS through undertaking the Isle of Wight challenge this weekend when I am being admitted - please look at supporting them if you...

This time next week ............

26/04/2015 20:38
Well in my final week before planned pre-transplant admission next Saturday. Range of events this week. Usual blood test on Monday; Tuesday appointment with Transplant Consultant in Southampton, which will determine treatment regime based on all...
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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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