My Journey with MDS


Second week at home!!

25/10/2015 20:09

Just need to start with a reminder that today is  international  MDS awareness day which is important given the lack of knowledge about the condition. I recorded a 20 second piece for MDS which appeared on facebook page and twitter !

Attended the twice a week clinics, bit disappointed that my CMV markers have increased a bit this week, but good that I am being monitored so regularly by the team. Still really weak and get tired very easily which is par for the course, but I think I am very slowly getting a bit stronger, lots of muscle wastage to get back. Appetite remains good which I am sure is helping. It will be a really long road though to reach what they call "my new normal". 

Nice to have a couple of visitors this week including Sallys boss. Does make me feel more normal again, as I am not allowed to go to shops/ pubs etc yet and even when I attend hospital have to wear face mask, good fashion statement!! My old locks of hair that I lost through chemo and treatment is starting to return, but apart from being patchy and fluffy is white!! Feel that the razor will be out soon. 



Lovely being at home

18/10/2015 16:36

So I have now been at home over a week, and am getting back into swing of it, can't say I miss 2am observations! Having home cooked food and cakes has certainly helped my appetite improve. Just pottering around the house is more exercise that I have had for 5 months, although stairs have been a challenge building up my leg strength, but I am slowly improving.

I attended the twice weekly clinics at the hospital last week which seemed to go ok, even though I found it totally exhausting but I knew that would happen, it was still a shock as to how the fatigue hits you. The test they did a while ago to check on donor levels within my blood indicated at the present time, I am 100% donor, which gave us a boost, although we know the test can change over time, bloods were good too. I'm still showing signs of CMV and Graft vs Host disease (GvHD) and I have been referred to the renal team for observations too as I have sustained kidney damage, which may well be due to medication through treatment. 

Again Sally and I have been touched by the comments we have received this week in terms of good wishes and I would like to give speciaal mention again to all the nurses on Ward C6 at UH Southampton who have done so much to help me get through this and we will go back and say hello in a few weeks time. You know who you are!




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.      


Improvement Continuing

01/10/2015 13:56

Last weekend I had two afternoons at home which illustrates that I continue to improve. I had a great time and enjoyed Sally's home cooking - after almost 5 months the good hospital menu becomes a challenge. Highlight of the weekend besides spending time together had to be Roast Dinner. 

I'm free of Baxter now most of the time, especially as I am meeting the challenge of drinking 3 litres of fluid each day to ensure my kidneys  benefit - its a real struggle but I am getting there. However the numbers of pills seems to be increasing! I am continuing to excercise and whilst only gentle I continue to improve. I have said it before but it is amazing how much my muscles have reduced as I  am not using them. I think it also is reflected in levels of fatigue, which continue to surprise me. 

All being well I will be on overnight leave Saturday into Sunday after which I hope there will be a plan for discharge, but I am trying not to get ahead of myself , I know I need to take it one day at a time. 



Beginning to show some improvement

22/09/2015 16:08


Well it was a difficult beginning of the week, but slowly improved. I was a bit down to say the least at the beginning of last week, which even if I say so myself has not really been me. 

Started a new drug for CMV on Thursday ( twice a week ) and despite protest from Baxter it's a tablet not IV so more rest for him. Friday last week was the first day I exercised for a while walking the length of the ward, which doesn't sound too much, but in my state was a big deal. Week finished on a high as it was our anniversary on Saturday and I was allowed home for the afternoon might just have been a few hours but it really helped my morale and it was lovely to spend time with Sally at home


The main issues (as I understand them) now need be sorted to be able to go home are the CMV  and the need to improve kidney function. There is no discharge date in sight at the moment but we are keeping hopeful !

Just in case you might spot me in the near future don't be surprised if you think I have lost weight - I am now twelve and a half stone and need a whole new wardrobe ! I have lost three stones since being in hospital due to the treatment regime. 


4 months today !

03/09/2015 16:15

I am sorry for followers of my blog for the delay in writing it but I have been pretty unwell at the moment and Sally is typing this on my behalf.

The CMV virus has taken it's toll and everyone is working flat out to get it under control. The problem is that the drug used to combat the virus has affected my kidney function and the alternative drug impacts on the transplant. Another drug is being sourced and I should hear about that at the weekend. 

I have been quite low in mood this week which the nurses and of course Sally have picked up on as I haven't been my usual cheery self ! I think the lack of a discharge date is really getting to me now and also the realisation that I have been an inpatient for four months this week. 

Sickness has been a problem this week and I have felt extremely tired. The stem cells appear to be doing ok which is a relief, just need the virus to subside now !

Not much more to say at the moment and I will write again soon.


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 turned out to be fungal pneumonia which has knocked me sideways. An added complication has been the emergence of the CMV virus which is a childhood virus that my original donor was carrying. This has given the docs cause for concern and I am now on heavy doses of anti-viral drugs that are not at all pleasant.

Now for the good news and this time I am remaining cautious but my first neutrophils appeared on Sally's birthday ( day +11). This was really exciting as it was so early and of course it made Sally's day ! The counts have increased by the day and now the neutrophil count is 4 and my white cells are 5.2 ! This is the best that they have been since before my diagnosis last August.

I am now working hard with my physiotherapist to regain my strength and ability to walk for more than a few paces. It's hard work and I am totally wiped out afterwards but it's a means to getting fit enough to go home. Believe me after three and a half months in isolation I really can't wait !

These are such baby steps and it is still early days but today we have at this moment some good news.

Again thank you to our family, friends and fellow MDS patients who are remaining a constant support to both of us. 


PS - For those who are interested I managed to source and gift wrap Sally's presents via the Internet - not sure I would be able to but worked ok!!


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 sickness which I guess is a result of the conditioning treatment. Unfortunately this has also resulted in a very sore tummy and lots of shuttle runs which when attached to Baxter is very tiresome !

It's now a waiting game as followers of this blog will know. 

One aspect of this stay in hospital has been being able to watch the cricket on my I Pad and what a great result if you are not Australian ! It kept me entertained and the time seemed to go so much more quickly.

Have had visits from family and of course Sally who is here everyday. 

Finally there have been so many lovely messages of encouragement that it is really overwhelming. Thank you to you all it means a great deal. 


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 course Baxter is now much more gainfully employed. 

We have received loads of positive wishes for this transplant which is really nice and encouraging for us both on what has become a really difficult journey. 


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 treatment starts next Friday, it will apparently be different to that of the initial transplant but I await the details!! 

I know I have said it before but Sally and I are grateful for all the messages of good wishes especially during the period of uncertainity it has helped us both.  It has been difficult for us both coping with this period in different ways as I am sure you can imagine. 

I'm making use of the bicycle in my room, under the active encouragement of the Physio - I have to say its making a difference as I have been staggered by the loss of muscle (not that I had much) in my time here, also using stepper to avoid getting "bungalow legs" - want to try and be as well as I can be for transplant. I have lost over a stone and a half on the "transplant diet" in addition to previous weight loss, although its not one I would recommend. 



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