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

Watching ..........and Good Luck Linda and Dave

23/01/2015 10:59
MDS patient support group has a closed facebook page which is a fantastic source of support and positive thinking, from people and their carers who have been diagnosed with MDS. I wanted to set out support for two people and their families who are...
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Still Recovering and signed off!

20/01/2015 10:50
As predicted blood test showed my Haemaglobin levels below target so I am in Day Unit for 2 Units of blood and platelets. Levels were not quite as low as I might have thought, looking at the positives. Usual cheerful and helpful staff at Day Unit,...
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Slower than I anticipated

18/01/2015 15:46
Well been out of hospital 4 days, not surprisingly frustrated at how long its taking to get over the flu, infection and hopsitalisation. So having to take it easy. Blood test tomorrow and as I am sure my "battery" is running low - transfusion will...
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Thanks to Gosport Adult Services Area Office

17/01/2015 15:56
Well done to all who donated cash instead of sending Xmas cards around the office to raise funds for a local hospice and MDS Patient Support Group. Thanks so much for thinking about MDS - it is really appreciated.
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Getting on and getting better

12/01/2015 22:00
Better day today, although did need more blood. IV antibiotics have changed to oral ones from tonight. Looks like daylight emerging in terms of a plan to get home in a  couple of days. Obviously great support from my wonderful wife - seems I am...
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What a difference a week makes!

09/01/2015 00:00
Well never really made it to Day 4 of chemo as feeling so poorly. Phoned the oncology helpline and all set in place to be admitted via A&E which worked really well, within 1 and a half hours had cannula in and first IV antibiotics and Saline...
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New Year is here ........

02/01/2015 00:00
First blog of 2015 sees me writing from the Day unit, in for 2 units of blood and platelets today. Needless to say it is busy here, I never cease to be amazed by the positivity in the room regardless of anyone's circumstances.    I...
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Great Xmas

27/12/2014 00:00
Well had a great Xmas with all of the family around. Went out for Xmas Lunch and had a lovely time. Everyone massively helpful and I hope they all enjoyed themselves too. Back to earth with a bump today as had to attend hospital for blood test and...
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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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