My Journey with MDS


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! It was replaced in the morning by his baby cousin who only had one pump. That seemed ok until wednesday evening when I had another temperature spike and probable infection, so baby cousin was traded in and I have another Baxter type now. The biggest question is can he have the same name???

Getting another infection so soon after the previous one clearing was a bit depressing to say the least, but all of the processes kicked in really quickly so after feeling rough for a few days, it looks like I am getting on top of it (or rather the anti biotics are as I have no immune system) or at least I hope so. 

In terms of the Donor, we understand that they are being pursued with some urgency and as soon as we can say something we will. Importantly it has moved from the search phase to pursuing an actual donor - more to follow when the detail becomes clearer. In the meantime I am trying to remain healthy, but it is hard to see the good weather outside..... Celebrating (?) 12 week today !!! 

Also credit to the team here who are a real help in my remaining positive and upbeat in managing the situation and of course Sally.  


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 several options are being actively being pursued but have no detail yet. Hopefully there will be more concrete news soon as it will help both Sally and I refocus on life in isolation and the new target, reminding me I have passed 10 weeks in this room yesterday. As I am sure everyone who knows me - not being in control is hardly a strength of mine. 

Baxter and I are coping with our seperation as he continues to enjoy a well earned rest from pumping "stuff" into me. As I am "better" I am back on exercise and although the physio is away I have been using the bike twice a day which will help keep some semblence of muscle tone. (no that is not a cue for you to LOL).

Hopefully more to add in the next week. 


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 put it mildly) but we have to be positive and know the team here are working so hard to look at all of the options for really is a question of taking one day at a time, which is not necessarily one of my strengths!!! We should know a bit more at the end of next week. 

Still not completely clear of the infection, althouth the signs are it is improving after 3 weeks. I had my central line removed on Monday, and another inserted on Thursday so I have a fw stitches knocking around!

My "new" sister Bev paid a surprise visit this week coming down from Lancashire and it was good to see her and Keith on Wednesday and Thursday as they visited a number of times.

Also met Brian Baggott who had a stem cell transplant 3 years ago here at Southampton, with whom we have had contact via MDS and who has been a tremendous source of support. Thanks Brian!!

Sally has had a weeks leave, so she could get some much needed rest and some time for herself. I think the lack of a timescale to work towards makes it harder. I am sure its harder for carers juggling all of the commitments and Sally has been in to see me 62 out of 63 days!!l

As always many thanks for your e mails and good wishes 


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 looking forward to going back to having the dreaded cannula but if it helps to control things and makes me feel better then I'm ok with it. 

I have managed to escape from my room twice this week, once for a chest X-ray and the 2nd for at CT scan. Seeing the outside world is always interesting when cooped up in the same room. This of course was only possible thanks to infection and high temperature ! This seems to have been a long week and this infection seems to be going on for so long. I had another temperature spike last night after thinking that I may be getting through it.

It is looking likely that the 2nd transplant will happen around the 15th July all being well. There will be a different conditioning regime and we will know more about that nearer the time.

It was great to see my boss this week and catch up on Council news. Also Cate my sister-in-law visited and brought a new addition for my excercise programme - an indoor putting matt ! One of my nurses is a keen golfer so I anticipate some competitions ! Sally had to walk through the hospital with my putter from home and I think that she thought that she might get stopped by security !

Hope that I will have more positive news about the infection next week and once again thank you to everyone for their messages of support and for keeping in touch.



Slight change to the plan........

21/06/2015 15:47

Well its 7 weeks ago this afternoon that I came into hospital and this room. 

Its been an eventful couple of days for me in the hospital, not helped by having a temperature spike in the early hours of Saturday morning, which triggered the usual and speedy responses (as I am now becoming aware). So back on antibiotics, xray and various tests etc to determine infection type and location - thankfully feeling a little better today and back to eating (always a good sign for me !!!) so hopefully all will be ok. 

Saw my consultant on Saturday afternoon, he informed us that having reviewed the donor information, they have decided to call another donor forward, again it is not a local one this time donor is in Taiwan...... obviously something about my genetic make up!! So no news yet on timings except the estimated 2 - 4 week timeframe. It really is incredible how this all works and just shows the value of the international registers, difficult to express how grateful we are and how being on the register can help. 

He had also talked earlier in the week about the possibility of me being allowed home "in quarantine" to give me a break from hospital, coming back for my usual IV medications / blood products to Day Unit, whilst that is fantastic, not quite sure how my current infection plays into that, no doubt more next week. Needless to say both Sally and I want that to be a possibility if it safe to do so. 

Thanks to Ben and James for fathers day cards etc, nice to receive them. Unfortunately James has a cold so is banned from visiting and Ben is at the Austrian grand prix. 

Sally continues to be my rock making sure I have everything I need and the fridge stocked up (albeit no beer in sight!!) with soft drinks. I know she is looking forward to a week off the week after next, and whilst I may still be here she can hopefully get some R+R. Seem to have lost my taste for coffee which is a bit frustrating but I am sure it will come back. 

As always thanks for all messages of support ...... continues to mean a lot to us both. Sally has a a new facebook friend courtesy of someone who also has MDS, a cockapoo called Marley Bear !! 


Next Steps

17/06/2015 15:54

So test results are back and importantly I have not devoloped antibodies against the donor cells, which is good news. The plan now is to go back to the donor for another batch of stem cells. Too early to be clear about timing. Given my lack of immune system I am in the best place to avoid infections etc, even though it is quite tough being stuck in the same room as it is week 7 now. Still if I put my face mask on I am allowed to walk the corridor in the ward...... another fetching look to add to the photo album. For a special treat I even took Baxter out yesterday as I was attached at the time. He is getting a well earned rest in this interim period. 

Sally has been overwhelmed by the recent flowers she has received which have helped cheer her up ......she continues to visit me everyday which is good for me but very demanding given everything else. 


Once we have more information on timing will let everyone know.  



The waiting game ...........and good luck BF Flyers

13/06/2015 17:50

As indicated last week, transplant did not work and I have undergone a range of tests and had my fifth Bone Marrow Biopsy last Thursday. All of this should come together next week to help consultant and team determine the action plan for next steps. In the meantime I am remaining well and my appetite has returned. 

Seems odd to be less dependent on Baxter these days, but we are in constant touch and I do have a 14hr stint of IV's overnight so he is remaining gainfully employed!!   No slacking allowed. 

Glad that I can now begin to have a few more visitors (of the bug free varierty) As I have indicated I could be here a while, but as always its a means to an end and getting a successful transplant and starting all of the recovery is why I am here. I know my immune system is seriously compromised so Sally and I are taking no chances - even an extended stay with all of its pressures is only a short period really in the scheme of things. 

So I now have an exercise / stretching regime thanks to Physio - it is scary how much you decompensate when doing so very little. So on days I don't need a blood transfusion I am cycling on the exercise bike in my room (just in case you thought I was preparing for Tour de Southampton!!) and later in the day - wearing a face mask I am allowed to walk the corridor within the ward if its quiet. 

We continue to be overwhelmed by messages of support and good wishes from family, friends and colleagues through our journey - it really does mean a lot. 


Good Luck tomorrow (14th June ) to the Bracknell Forest Flyers who are taking part in the Purple Patch 26.2 Mile Challenge - in aid of the MDS UK Patient Support Group - takes place at 2pm - Braywick Sports Ground, Maidenhead. 



Not the news I wanted to hear

08/06/2015 16:43
In essence my Consultant now believes that all my episodes last week may well be me rejecting the new stem cells, as my numbers have remained flat. The are doing further tests to confirm as well as another Bone Marrow Biopsy this week to provide the appropriate confirmation. Apparently this is fairly unusual. Why am I surprised!!
They are now beginning retesting by blood / type etc  either to ask for more cells from donor, or if I have developed antibodies against donor then apparently possibly another donor. Either way I could well be in here for another 3 months or more as all of this takes time and they are not about to release me even in the interim !!!
Consultant seems positive  and whilst Sally and I feel that disappointed is an understatement, we are seeing this as a setback and are also being positive as there is a plan b / c and a way forward. 
Thanks as always to everyone for their good wishes and support 



An even more eventful period ....... bringing you up to date

05/06/2015 11:22

I must start with an apology but its been a really difficult period both for me but really for Sally watching on and helpless to do anything but be here (which in my eyes is a lot!!) 

So hot on the heels of the fantastic news that the new stem cells were starting to do their thing, i started to feel a bit rough which I thought was ususual as new stem cell activity is linked to feeling better. Anyway this culminated in a Sunday afternoon temperature spike and  associated  riggors and thereafter every 6 hrs, introvenous paracetamol worked for a while and yes back to those temperature spikes. 

Team here have been brilliant and in between testing everything they could and re testing, reassurred us that this was normal in patients and people were very lucky to not leave without such an episode. Well i have hardly been able to lift my head off the pillows most of this week. Had a visit for a CT scan wheeled down had to wear a mask and go a route which was not direct to minimise contact with public. I am sure some people thought the mask was to protect them not the other way round !! lol

I may now have some Graft vs Host Disease (or GvHD for short) which is not negative, I am on daily steroids for that and as at this morning had my last temperature spike yesterday afternoon. (fingers crossed) !!

Sally has been bearing an enormous burden for which I am both grateful and proud. She has been trying to keep people in the loop when they contact, and including banning visitors this week!!! To friends, family and colleagues (and any other category) apologies for being tardy in responding to messages but hopefully this explains why, but a big thank you for your support not just for me but also Sally.

Well finally confirmation that the hair has left the bit of my body that was a temple and the rest of my body too. Hopefully normal service will be resumed now ..........take care all




Day +13 - Its been an eventful week or so!!

27/05/2015 15:43

Apologies for not completing my blog for so long, but it has been an eventful week with various episodes of reasonable  moments and dreadful days!

As predicted, the periods of flat blood counts following conditioning does take it's toll. Firstly the face furniture (feeding tube) decided to remove itself during a moment of sickness which caused a fright for myself and Sally who was with me. Actually this turned out to be a blessing in disguise as it was decided that due to the non appearance of the dreaded mouth ulcers that I didn't need to have it put back in. Have subsequently managed to eat very small amounts of food so for those who know me this will be a surprise!

One of the issues that I have been struggling with is fluid retention due to the volume of medication/treatment that is being administered via my central line. I seem to be heavier than when I was admitted on some days which considering that a biscuit feels like a main meal is disheartening. However ,the solution is always the dreaded diuretic, resulting in Baxter and I doing shuttle runs to the bathroom MANY times during the day and night ! I'm pleased to report that I beat him every time and Baxter has yet to win the race. Just to show how close Baxter and I have become, the other day I was unhooked from him for half and hour and still managed to try and take him with meuntil I realised that we were no longer co-joined !

Over the Bank Holiday weekend I managed to pick up an infection and had spikes in temperature. Pleased to say that today the doctor informed me that my infection markers had dropped so the antibiotics are doing their job.

Still feel exhausted most of the time as Sally can testify as she has spent many hours watching me sleep when visiting. Now waiting for the stem cells to do their " magic " and hopefully will be able to report on progress next time.

Thank you to all our family, friends and work colleagues who have sent lovely wishes and words of encouragement it has meant a great deal to both of us.



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