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

Mothers Day

15/03/2015 19:07
Great mothers day with family meal at lunchtime. Good to do normal things and catch up with everyone. Sally on leave this week and we are going to I o W on Wednesday for a break together, probably last one before transplant, having had to cope with...
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Finished Chemo, changes in blood products prescription, reflections on National Service Framework

13/03/2015 18:35
All well with chemo and finished the cycle. Impact is cumulative and I have felt more tired after this third time. Discussion with consultant included being prescribed irradiated blood products and special platelets which will help on the step...
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Uneventful Week really

07/03/2015 12:49
Chemo week went quite well ......... did feel tired but otherwise ok. Blood dropped at Monday's blood test which was a bit disappointing so booked in for three units of blood Tuesday plus platelets (although ended up having these on Wednesday in the...
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Seems like only yesterday I finished Chemo and it's round 3

01/03/2015 18:29
Yes Chemo starts again tomorrow - another 7 days of injections, so a daily commute to QA Hospital for me. Weekly blood test again tomorrow too. Results back suggest blood levels fallen more than usual so I am in for 3 units of red on Tuesday !! As...
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Away from MDS - tracing my birth mother

26/02/2015 21:18
Many people will know that I am adopted and before I was diagnosed I was in the process of searching for my birth mother. Unfortunately she died nearly 20 years ago. I have however been in contact with her younger brother and sister which is really...
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Didn't make the pre transplant tests !

25/02/2015 20:28
Best laid plans and all of that - my transfusion needs overtook pre transplant tests yesterday, which I was less than happy about on a number of levels not least the waste of resources. But I guess I have to get grumpy about something or its not...
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Good Week - different things

21/02/2015 20:41
Overall I am feeling better than I have for some time, which I am pleased about. Had a consultants appointment this week....... must admit to being surprised at the blood test results. Perhaps the chemo is beginning to make a difference but it is...
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Need Platelets

21/02/2015 20:36
Well weekly blood test indicated an urgent need for platelets, so neede to attend Tuesday rather than Wednesday and blood transfusion piggy backed on this even though readings for me were marginally better....... 
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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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