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.






Infection but progress

22/08/2015 15:55
Here we are on day +15 and it has been a difficult fortnight and apologies for not updating my blog during this time. Stem cell transplant went ahead as planned but as I have previously said I have been fighting infections. One of these infections...

Day plus 3

10/08/2015 16:34
Transplant for my new stem cells arrived from Germany on Friday and I received them at about 6.00pm. It took three hours for the cells to go in which is good news as there seemed to be plenty of them !The whole weekend felt as though I had sleeping...

Conditioning has begun now on DAY -5

02/08/2015 09:45
The conditioning treatment actually started on Thursday and as last time I reacted on Day 1. The regime is different to last time as it is aimed at ensuring my immune system is really suppressed. Transplant of the new stem cells is due on Friday. Of...

Good News - What a relief!

24/07/2015 11:50
I'm delighted that my new German donor has agreed and the new date for the transplant is 7th August. It's really a coincidence that the day is exactly a year since I attended QA to receive the diagnosis of MDS - what a year!! So the conditioning...

What happened to Baxter? and Another infection!

19/07/2015 11:36
A couple of adventures this week the first involves Baxter who as I had reported previously was definately under occupied. So in the middle of the night early in the week he was spirited away by one of nurses as someone really needed his three pack!...

Its a waiting game !!

13/07/2015 16:32
Well the good news is that the infection appears to be clearing up according to the infection markers in my daily blood tests. Of course the downside to that is that I am becoming impatient to know what the next plan will be. As yet we know that...

Yet another setback !!

05/07/2015 16:27
On Tuesday received the news that the Taiwan donor was not available for 12 months and the US donor likewise. So mid July transplant is off. The search for a donor has started again from scratch, clearly not the news Sally and I wanted to hear (to...

Infection Continues

28/06/2015 16:12
Week nine has started the in the same way as last week and the infection continues to make me  feel pretty rubbish. There is a chance this week that the Hickman Line may have to be removed to assist in getting rid of the infection. I'm not...
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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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