My Journey with MDS

Can you believe it - writing this from home!

09/10/2015 00:00

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. Whilst there is no doubt its an emotional time for me (and Sally of course) the quality of all the support I have had has been incredible. Never have I been anywhere where all the staff as they were preparing to leave my room always asked is there anything else I can do for you. A great example of person centred care I believe. 


So now the stage of my journey is beginning, still with some issues which need to be managed and  with many risks particularly of infections among other things that can provide set backs. I am now attending outpatient clinics twice a week for the next 3 months or so. Whilst I feel ok in myself I am still quite  weak and suffer from extreme fatigue too. 


I want to also thank everyone for their messages of support and good wishes, your comments, contact, messages and texts have been a great source of encouragement for both myself and Sally. Sally has been so committed to support / visiting has been beyond what I had imagined in coping for all this time, so much so that one of the Doctors refers to us as Team Jones !


Thats all for this blog as I look forward to settling back in my own home and the next stage of the journey.      


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