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.

 

 

 

 

Blog

A whole New Family

20/04/2015 09:45
Sunday was a very special day in that Sally and I met my Birth Mothers sister and brother after my recent search. We met half way between Lancashire and south coast over Sunday Lunch - it seemed that 3.5 hours went by in a flash. Ray and Sylvia were...
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Another week closer

17/04/2015 20:00
Compared to recent weeks, fairly quiet. Bone Marrow Biopsy went well and no adverse reactions. However I knew they had not taken bone sample due to bleeding as I have a low platelet count, so I had a call late this afternoon that I need to go back...
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Testing Time and new Admission Day 2nd May

12/04/2015 09:45
So got through this week - had a reaction to platelets on Wednesday and needed injection afterwards - but all ok .   Tiring day on Friday with all of the tests. Met the lead transplant nurse who was brilliant in terms of what to expect. Pulled...
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Chemo changed this week.

06/04/2015 20:15
Consultant stopped chemo this week at appointment on Wednesday in preparation for transplant; medication changed too. Tests this week as part of pre-transplant on Friday and meeting Lead Nurse to look round where I will be staying on admission....
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Easter .........

04/04/2015 00:00
  Good to spend Easter with Sally and family. Ben celebrated his birthday bash with Kat and was joined by his brother James and his wife Rhi. On Sunday we met up with Sister and Brother in Law Cate & Jed and their families for a lovely...
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Another good week

28/03/2015 20:13
I have discovered that me having a good week does not necessary mean my blood counts believe it!!! Had 3 units this week with a bit of an issue as my blood reacted in the "cross matching phase" - extra sample sent off to Bristol, but I am pleased to...
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Provisional Date for admission

27/03/2015 12:00
Found out that the provisional date for admission for pre transplant treatment has been set for 3 May ..... still number of tests for me to go through and my donor, but good news - a number of these for me are on 10th April. Meeting the lead...
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Nice break on Isle of Wight

21/03/2015 17:28
Sally has been on leave this week and we took the opportunity to use the spa break given to us at Xmas by James, Rhi and Ben!! Great present and we booked a hotel (Melville Hall) on Isle of Wight ( we should have gone to Lanzarote on Sunday) so a...
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News

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...
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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...
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Isle of Wight Challenge - Well Done + pictures

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

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

MDS Patient Support Group

31/12/2015 00:00
www.mdspatientsupport.org.uk/          MDS UK Patient Support Group supports patients with Myelodysplastic Syndromes (MDS). Support, information, awareness, campaigns for MDS patients & families.
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Delete Blood Cancer

01/01/2015 00:00
  www.deletebloodcancer.org.uk/en Delete  Blood Cancer DKMS leads the fight to delete blood cancer by empowering people to take action, give bone marrow and save lives
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Leukaemia and Lympoma Research

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

01/01/2015 00:00
www.leukaemiacare.org.uk/  Providing support to anyone affected by blood cancer
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