My Journey with MDS


A whole New Family

20/04/2015 09:45

Sunday was a very special day in that Sally and I met my Birth Mothers sister and brother after my recent search. We met half way between Lancashire and south coast over Sunday Lunch - it seemed that 3.5 hours went by in a flash. Ray and Sylvia were so welcoming and of course full of information about how family life was. They both did a double take when they say me and said I was the spitting image of their father when younger!! 

Not only have I got a new family who have welcomed me, but they are all so supportive and want to help as I go through treatment. 

I have to mention that my half sister made contacted( we were both adopted) - we have had such a laugh in the short time we have been in contact and as anyone knows laughter is a great tonic. What is scary is that we have several interests and traits in common...... 




Another week closer

17/04/2015 20:00

Compared to recent weeks, fairly quiet. Bone Marrow Biopsy went well and no adverse reactions. However I knew they had not taken bone sample due to bleeding as I have a low platelet count, so I had a call late this afternoon that I need to go back on Monday to have another one so they can secure bone sample.....ouch!! This will be crucial in determining what chemo regime I will be on apparently. So Monday is now blood test at QA and then off to Southampton for platelets and BMB, back to QA for blood transfusion on Tuesday and consultant appointment on Wednesday.   


Testing Time and new Admission Day 2nd May

12/04/2015 09:45

So got through this week - had a reaction to platelets on Wednesday and needed injection afterwards - but all ok .  

Tiring day on Friday with all of the tests. Met the lead transplant nurse who was brilliant in terms of what to expect. Pulled no punches about the treatment regime. Having said that going through the journey of what to expect was actually very helpful and  both Sally and I appreciated the time that was given to us. We were also able to see the  unit and a typical room where I will spend between 6 and 8 weeks. .

Received my pre admission letter, with admission date for  Saturday 2 May for all the pre conditioning / chemo with the stems cells arriving from America around 12 days later ….. amazing really.

Seem to have appointments every other day now. Next week is blood test ; My third bone marrow biopsy with platelets and a blood transfusion. 

On Sunday 19th I am meeting my birth mothers sister and brother for the first time. Been in touch via phone and Facebook and Sally and I are really looking forward to meeting them both. 


Chemo changed this week.

06/04/2015 20:15

Consultant stopped chemo this week at appointment on Wednesday in preparation for transplant; medication changed too. Tests this week as part of pre-transplant on Friday and meeting Lead Nurse to look round where I will be staying on admission. Looking forward to this as we have lots of questions as you might imagine about some of the practicalities.  Appointment week after for my third Bone Marrow Biopsy - Yuk !!


Easter .........

04/04/2015 00:00


Good to spend Easter with Sally and family. Ben celebrated his birthday bash with Kat and was joined by his brother James and his wife Rhi. On Sunday we met up with Sister and Brother in Law Cate & Jed and their families for a lovely lunch at Cams Mill. 



Another good week

28/03/2015 20:13

I have discovered that me having a good week does not necessary mean my blood counts believe it!!! Had 3 units this week with a bit of an issue as my blood reacted in the "cross matching phase" - extra sample sent off to Bristol, but I am pleased to say all ok. Oh and platelets which are now matched to my donor! Chemo starting Monday for last cycle before treatment as well as my weekly blood tests. 

 Went to wedding reception Friday where our son Ben was best man. Great evening and I survived it!!  but nice to do normal things. All the best to the happy couple.   

Have arranged to meet my birth mothers Sister and Brother in April - so it is all happening. 




Provisional Date for admission

27/03/2015 12:00

Found out that the provisional date for admission for pre transplant treatment has been set for 3 May ..... still number of tests for me to go through and my donor, but good news - a number of these for me are on 10th April. Meeting the lead transplant nurse after the tests so she can share what to expect and get chance to  look around and deal with our questions. Additionally I will need another bone marow biopsy prior to admission (oh joy....). On 30 April I have to go in for the hickman line to be inserted as a surgical procedure ready for admission. 

Its now becoming very real and both Sally and I are both excited and nervous about the prospect of our journey ahead. But we know there is plent of support for us both. . 

Of course 3rd May is the weekend of the Isle of Wight challenge which Cate and team are undertaking the Isle of Wight challenge, raising funds for MDS, which is spooky. 


Nice break on Isle of Wight

21/03/2015 17:28

Sally has been on leave this week and we took the opportunity to use the spa break given to us at Xmas by James, Rhi and Ben!! Great present and we booked a hotel (Melville Hall) on Isle of Wight ( we should have gone to Lanzarote on Sunday) so a welcome distraction from that. 

We had a lovely break which was great for us in the lead up to transplant. Sally took advantage of the spa to have some much needed treatments.  Everyone was really friendly and accommodating and weather was reasonable. Saw two red squirrels at the Garlic Farm which was unusual. Food was great and now I have to work to lose some weight before I see transplant consultant in April. 

I think I've had a great week with the tiredness following chemo abating to a large extent. It will be strange with Sally back at work next week. 

Just routine blood tests and transfusion plus platelets this week. 


Picture is me at Ventnor on Wednesday.



Mothers Day

15/03/2015 19:07

Great mothers day with family meal at lunchtime. Good to do normal things and catch up with everyone. Sally on leave this week and we are going to I o W on Wednesday for a break together, probably last one before transplant, having had to cope with disappointment of not being able to go to lanzarote, so good to spend some time together. 

Also finalising date for us to meet with my birth mothers brother and sister. Really looking forward to meeting them both and finding out more about my background. 


Finished Chemo, changes in blood products prescription, reflections on National Service Framework

13/03/2015 18:35

All well with chemo and finished the cycle. Impact is cumulative and I have felt more tired after this third time. Discussion with consultant included being prescribed irradiated blood products and special platelets which will help on the step towards transplant, all part of the science which is fascinating. Back on antibiotics for an infection in my finger. Numbers drop after chemo before picking up again. Next two weeks is just blood tests and transfusions and platelets so a bit of respite from attending hospital as much!

Whilst waiting for my consultant appointment this week I was reflecting on my involvement with developing the National Service Framework for Long Term Conditions back in 2003/2004. I remember the patient representatives saying that if people were keen to improve patient experience then improve conditions in waiting areas as people typically spend longer waiting than in the consultation. I certainly understand the point they were making. 

Lots of traffic on facebook and twitter about MDS; delete blood cancer raising awareness; fundraising etc  - follow me  on @glyn014


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