My Journey with MDS


Tuesday - Day minus 2 to Day plus 3

17/05/2015 16:30

Well Day minus 2 is fluid day!! This was to accompany the dreaded Melphalan which made me feel sick and bloated due to all the fluid that was pumped in over 30 hours.

Day minus 1 - hurray no nasty drugs but had the hangover from hell from the effects of the Melphalan. I didn't manage to get out of bed all day and lost my appetite entirely. I was really hoping that I would feel better for the arrival of my new stem cells the following day. 

Day Zero - felt as rough as the day before with little energy and no desire to eat or drink. Sally arrived to a sleeping patient and I was hardly able to stay awake for the rest of the day. Stem cells arrived at the hospital and I received them at 4.30 in the afternoon. I don't remember much about the cells going in as I was so poorly. The co-ordination of the cells coming across from America was brilliant and we will always be eternally grateful to the selfless act of our American donor in donating 2 very precious bags of stem cells. I had a mild reaction to the cells but it was minor in the scheme of things. 

Day + 2 - exhausted today and finding it hard to stay awake. Something very special happened though, my birth sister who I have only recently found came with her partner Keith to see me in the hospital. It was the first time that we have met and was an emotional and lovely meeting. We had over 50 years to begin to catch up on. They had travelled all the way from Lancashire which made this so special.

Day + 3 - Sally is writing this blog today as I am feeling so exhausted. Tummy problems have started as predicted and I have had a feeding tube inserted as the new drug given today Methotrexate is apparently going to give me mouth ulcers very soon , that will be a joy to look forward to ! Still not eating and finding it difficult to make myself drink enough. All seems on track and as it should be so far. Baxter remains my constant companion as always which can be a little trying whilst managing the tummy problems !


Sunday & Monday Day minus 4 and Day Minus 3

11/05/2015 21:30

Sunday - Day minus 4 

Overall a quieter day for treatment today, spent several hours this morning free from "Baxter" now that Campath is finished. Managed a circuit of my exercises. Its actually surprising that I have been here a week now! Whilst I might think that it has gone quickly I know that the burden of that has fallen on Sally juggling everything. I'm experiencing a general level of tiredness is still ever present and had a doze after lunch and after evening meal.  

Good to see James and Rhi today as well as Sally. Good to catch up on how things are going - I didn't share the QPR result with James though !!   

Posted some pictures of Cate and team on news bit of website as they got to finish line. 

Its been nice to receive e mails; texts; messages from friends, family and colleagues so thanks to all for them. 

Monday - Day minus 3 

So today its a change in regime in the final few days prior to the transplant. So as well as Fludarabine I have had my first dose of Cyclosporine which is an immunosuppressant  that is used to help prevent rejection (in my case ) of the new stem cells. It is something I am likely to be on for a fair while. The intial dose is given over 6 hours and started this morning and whilst this is on this afternoon my 16 hr IV is put up "Baxter" and I are inextricably linked all day and night today!! 

Just to add to the fun I will be having Melphalan tomorrow (another chemotherapy) this is accompanied by a need to ensure that I am well hydrated so this began at 5pm for 8 hours via IV and will be followed by another 8 hour dose at 1am. I've cleared the route to the bathroom and stocked up on bottles. 

Ruth (former colleague and Sally's old boss) before her retirement popped in this afternoon to see me - good to catch up on her plans. 

I caught Baxter on a weak moment and his first public viewing is below: 



Friday & Saturday D minus 6 and D minus 5

09/05/2015 12:07

Friday Day Minus 6 

Despite the excitement of the general election I still had a good nights sleep!!! It was on TV all day as well so a back drop to the days events. Fludarabine this morning and final session of Campath later today, which I am pleased to say went without any impact.  Generally feeling tired but appear to be doing well. Measuring of inputs and outputs continues unabated.  

Nice to see Cate this morning, fresh from success on the Isle of wight challenge - what a great job she and the team did in raising funds for MDS.  Good to catch up. 

Fell asleep after lunch before getting Platelets this afternoon alongside my shuttle runs to reduce fluid retention. Followed Bracknell Council election results with interest on twitter well done to comms team. 

Sally back this afternoon with my daily washing and bits and pieces. As everyone knows its all quite an ordeal for family and Sally is doing fantastically well juggling everything with daily visiting. 

Did a circuit of my exercises this evening, which I was pleased about. 

Saturday Day minus 5 

At the risk of jinxing everything, seem to be able to sleep ok including coping with 2am vital sign checks. Staff are good at getting IV changes to an absolute minimum during night which is excellent.  

Tiredness seems to be ever present currently and I am beginning to get that metallic taste so often linked to chemotherapy.  I was freed from "Baxter" (my new name for the IV stand and pump) by 8ish today - seemed strange having so much freedom this morning. Have I mentioned what  a style icon I look like in my "ted stockings" ?  Perhaps a picture is in order. 

Going to get a unit of blood today apparently to keep Hb topped up. 


Wednesday & Thursday - D minus 8 and D minus 7

07/05/2015 18:15

D Minus 8 

Pretty full on day as I needed some blood and platelets in addition to the medication regime. So was hooked up for probably 22.5 hours (not really counting) to my new best friend "the pump". Still in my unhooked up time did my first circuit of exercises set out by the physio - so felt pleased with that. Whilst on that subject enough of the smart comments about me having a gym installed in my room!!!  and yes the bike was used as part of that circuit!!

Pleased to say that there were no more reactions to the "Campath" but i have had some issues with fluid retention. All inputs and outputs are carefully monitored with my body being the process vehicle. I am clear what the required outcome is!!

Great to see Chris this morning and catch up on boys and events on IoW challenge 

So far so good ...... still eating well, overall feeling chirpy in spirit but with all medication tired at times but to be expected. Tomorrow sees introduction of another chemo drug as part of conditioning process. 

D Minus 7

Good night last night, slept really well. Getting to grips with my morning routine now. 6am Obs and blood tests, IV medication up; breakfast between 8-9  New chemo drug introduced this morning in addition - only tied to the pump for 30 minutes though. So by 10.30 i was free to shower etc. Saw Dr late am and more assistance needed with fluids - so shuttle runs to you know where. 

Ben was in today so that was nice to catch up, as he has been away for a few days. 

Good blood test results for me - quiet day feeling sleepy, which Sally found out as I "dropped off" this afternoon. 

Just had top stitch taken out on Hickman Line.     

Thanks for all good wishes I know both Sally and I appreciate them, its nice to think so many people are giving us ositive thoughts to help us to get through this. 


Monday & Tuesday - Day Minus 10 and minus 9

05/05/2015 16:18

Monday was a pretty rubbish day with the anticipated reaction to Campath ....fever; shivers; high pulse; temperature and sickness. I think that frightened Sally - I was out of it at one point. Combining the various IV potions means that I am almost permanently hooked up. But amazing care and consideration. 


Tuesday - so far much better - repeat dose of Campath, but as I was told slightly less of reaction to medication today.  Appears it gets better. 

Great support from family and friends and MDS Community wishing well and offering support - which is both welcomed and uplifting. 

Pictures below of "home" for next 6 weeks. 





Admission Day today

03/05/2015 10:21

I phoned ward as requested this morning and admission is today around 2pm. So all the waiting is over and the next stage begins. I am grateful to have had so many expressions of good wishes and offers of support for which Sally and I are really grateful. It is nice to know that so many people are rooting for us.  Will keep blog going as part of this phase of my journey. Having my hair done for the occasion, spot the difference!


Well Done to Great White Hope Team

02/05/2015 17:49

The Great White Hope Team undertaking the IoW challenge finished at around 4.30pm this afternoon. Cate Skeat, Sarah Beardon, Katia Pothecary, Verity Penzer, Hazel Hutt and Sue Bunyan completed the event  raising over 5,000 pounds for MDS .....brilliant effort and well done to the team but also everyone that supported them both on the Island but those who have sponsored them. 




Admission Day - 3rd May

29/04/2015 17:00

Admission has been confirmed as 3 May following conversation with transplant nurse today. Will need to ring first thing to check timing and pre transplant treatment begins in earnest on Monday. 

Early start tomorrow as need to be in Southampton by 8am for platelets prior to Hickman Line insertion ........ 


The Great Wight Hope's fundraising page

29/04/2015 13:00


Cate Skeat, Sarah Beardon, Katia Pothecary, Verity Penzer and Sue Bunyon are all raising money for MDS through undertaking the Isle of Wight challenge this weekend when I am being admitted - please look at supporting them if you can






My page:


This time next week ............

26/04/2015 20:38

Well in my final week before planned pre-transplant admission next Saturday. Range of events this week. Usual blood test on Monday; Tuesday appointment with Transplant Consultant in Southampton, which will determine treatment regime based on all recents tests and biopsoes, followed by my weekly blood transfusion in Portsmouth. Thursday is procedure for inserting central (Hickman) Line.  Will be able to update about visiting arrangements and details later in the week, Sally is in charge of this. 

Also next weekend Cate and her team undertake the Isle of Wight Challenge - good luck to them - as you will be aware more info is available on website.... they are raising funds for MDS and looks like they have a great total ...... but I am sure could always do with more support.

Colleagues at Bracknell Forest are undertaking a run in June the Purple Patch 26.2 Mile Challenge - in aid of the MDS UK Patient Support Group - again see news for details ....

Finally well done to runners in the London Marathon today .......... great job!! 


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