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.






Slow progress

28/03/2016 15:16
This is Sally writing this on behalf of Glyn.Glyn is continuing to improve medically and his strength is returning very slowly. The physios are working him hard and Glyn can now walk onto the ward using a walking frame. This is incredible progress...

Difficult Times

07/03/2016 16:31
This is Sally writing on behalf of Glyn as currently he is too poorly to update the blog.Since Glyn's last post, his kidney and liver function deteriorated significantly and at the same time the CMV virus increased to very high levels. Glyn became...

Trying to be patient whilst waiting for improvement

02/02/2016 15:53
It's definitely a real slog at the moment, medication has been changed to try and reduce the extent of the CMV virus and the test results come through twice a week. So a long time between tests but there is an important level of monitoring needed to...

Still in hospital

26/01/2016 20:46
Well I'm still in hospital but continuing to improve. I'm off the direct feed into my bloodstream which is good news and beginning to expand my diet under guidance so as not to upset my "system" . Most things are starting to settle down again but...

Still in hospital

15/01/2016 18:25
So is just over a week into my stay in hospital, things are improving slowly, with the combination of very restricted diet alongside direct feeding via "Baxter", steroids and antibiotics. It's not been an easy week in terms of dealing with it....

interesting New Year

07/01/2016 18:55
   Happy New Year to everyone. By a strange set of coincidences I find myself back in hospital almost exactly a year to the day that I was admitted last year to QA albeit for different reasons.  Saw consultant at regular Thursday...

Happy Xmas

24/12/2015 21:18
Can  I take the opportunity to wish everyone a Merry Xmas and Happy New Year for 2016.  Thanks from Sally and I for all the messages of support and good wishes through 2015  it has been much appreciated.  Will update blog in New...

Progress Continues

13/12/2015 19:58
Overall a much better week this week, which comes as a relief. I had some blood last Saturday week which has boosted my red blood cells. Also I am on self administered injections weekly to help my kidneys produce red blood cells. I am still having...
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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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