My Journey with MDS

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Uneventful Week really

07/03/2015 12:49

Chemo week went quite well ......... did feel tired but otherwise ok. Blood dropped at Monday's blood test which was a bit disappointing so booked in for three units of blood Tuesday plus platelets (although ended up having these on Wednesday in the end) From next week my platelets will have to be HLA matched to avoid me developing anti bodies to the transplant.

 

Another hospital based week next week with two more chemo sessions, blood transfusion and consultant appointment. 

 

 

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Seems like only yesterday I finished Chemo and it's round 3

01/03/2015 18:29

Yes Chemo starts again tomorrow - another 7 days of injections, so a daily commute to QA Hospital for me. Weekly blood test again tomorrow too. Results back suggest blood levels fallen more than usual so I am in for 3 units of red on Tuesday !! As always grateful to those who are donating their blood. 

Need platelets too and will soon be on special ones to help prepare for transplant. Plenty of reading on Tuesday

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Away from MDS - tracing my birth mother

26/02/2015 21:18

Many people will know that I am adopted and before I was diagnosed I was in the process of searching for my birth mother. Unfortunately she died nearly 20 years ago. I have however been in contact with her younger brother and sister which is really nice. Had a great conversation with my Aunt again today and we hope to meet up before the transplant. 

Needless to say its quite a surreal experience piecing together my mothers family and to discover that I am not now an only child. Seems there is a lot to pull together and understand.

 

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Didn't make the pre transplant tests !

25/02/2015 20:28

Best laid plans and all of that - my transfusion needs overtook pre transplant tests yesterday, which I was less than happy about on a number of levels not least the waste of resources. But I guess I have to get grumpy about something or its not me! On the whole I am feeling much better than I have been for some while which is good if not a little frustrating as I think I am fitter/better  than I am.

Anyway I was reading this article in the Independent whilst having two reds at the day unit yesterday about fair-trade products and apparently there was some real coffee recommended called “Grumpy Mule” which I have to go and buy ……….

 

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Good Week - different things

21/02/2015 20:41

Overall I am feeling better than I have for some time, which I am pleased about. Had a consultants appointment this week....... must admit to being surprised at the blood test results. Perhaps the chemo is beginning to make a difference but it is early days The major change was iron content in my blood down to 1200 this is  great news as it is a crucial risk issue with my dependence on blood transfusions and beyond. 

Back to  Bracknell to see Chief Executive and catch up on what is happening and discuss developments in my condition. Nice to see some of the team again as it has been a while. 

This week sees my pre-transplant tests at UH Southampton so it will be interesting to see what they entail, although the results will be used by the transplant team to link to treatment regimes.  I am also starting with Macmillan excercise programme. 

 

 

 

 

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Need Platelets

21/02/2015 20:36

Well weekly blood test indicated an urgent need for platelets, so neede to attend Tuesday rather than Wednesday and blood transfusion piggy backed on this even though readings for me were marginally better....... 

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New Week - similar stuff.

16/02/2015 20:00

Blood tests today revealed that whilst Hb holding up more than usual, Platelets have dropped. So its back to hospital tomorrow for transfusion. See www.blood.co.uk  if you want to give blood or platelets, believe me I am reliant on and extremely grateful to those who do. Wednesday sees an appointment with my consultant so will discuss next weeks pre transplant tests with her. 

Great news that two "mds colleagues" are home after their stem cell transplants. The long journey for them continues. 

I will keep promoting  delete blood cancers "who do you think you are"? as they try and increase the number of potential donors - more details at https://www.deletebloodcancer.org.uk 

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Chemo week draws to an end.....

13/02/2015 20:04

Well managed the full session of chemotherapy this cycle, although I am feeling shattered. Still feeling positive, but I needed 3 units of blood this week. Also had a PICC line inserted, which I have to say makes a great difference. CQC are inspecting at the hospital this week, so it will be interesting to see the outcome . 

Macmillan exercise session went well, looks to be a great scheme, more to follow as I go through this. 

Delete blood cancer are running a new campaign to increase the numbers of people to act as potential stem cell donors, please do what you can to encourage this. 

  

 

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Managing Chemotherapy

07/02/2015 00:00

A full on week with 5 chemotherapy sessions, blood transfusion, platelets and a picc line inserted, all went well this week. A number of appointments have come in as part of the pre transplant assessment. So it's later in the month for checks on Heart, Lungs and Kidney at UH Southampton. Two more sessions of chemotherapy next week with another transfusion and referall to MacMillan Exercise scheme. Delete Blood Cancer are asking for another contribution about my experience.   

Feeling better than I have done in recent weeks which I am pleased about and much more positive as a consequence especially as there is now a plan. 

 

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Posting on Delete Blood Cancer Facebook Page

02/02/2015 00:00

Hi All,

Been asked to share somethings about my experiences with Delete Blood Cancer as a patient. Here is the post from their facebook page 

This is Glyn Jones and his wife Sally.

Glyn was diagnosed with Myelodysplastic Syndrome (MDS) last August after some routine blood tests. 

MDS is a blood disorder. It involves the malfunction of the bone marrow in producing the correct quantity and quality of blood cells. 

Glyn describes what it was like to be diagnosed.

“To say my wife Sally and I were stunned is an understatement, the world stopped momentarily as we tried to comprehend the diagnosis and implications for us both. 

“Fortunately, I was allocated a specialist haematology nurse as a point of contact and she was able to talk through the implications and the fact that I had already been referred for a blood stem cell donation. She has remained a consistent source of advice and support on the journey MDS is taking me. 

“Actually the world does stop whilst you realise the enormity of having a life limiting condition with only one potential cure, it certainly has taken me some time to adjust to that.”

You can help get the world going for all those who rely on blood stem cells donations to get better by registering in five minutes online and requesting a cheek swab kit that will enable you to do your own tissue test to become a potential stem cell donor through our website: www.deletebloodcancer.org.uk

Please share

 

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