Category Archives: stem cell transplant

Making Lists Again

When you are young, you cannot wait for your 10th birthday when you finally go into double figures. From what l remember you start to feel a little more grown up…but when you get older double figures don’t hold the same joy, especially when there is a “0” at the end.
This year l have one of those birthdays coming my way…. yes the big 60 is going to hit. l am not sure how this happened 🤔
Forget bucket lists, l need to compile a list of 60 things to do in my 60th year !
First on the list was to eat smoked salmon and guess what, my neutrophils went up
to 2.4 last week. There are several foods that are not recommended if you are below 2.0. This is the first time in over 2 years l have reached the target. On my way home from the hospital l went straight to the shops. The following day my friend Yo and l sat and enjoyed a smoked salmon sandwich, oh joy. Of course this week l had chemo which will probably play havoc with my levels but l enjoyed every mouthful.
Now l need to work on the rest of the list, l need to cherry pick what l put on there
so my energy is spread out.

Certain things can be done to conserve energy. Online supermarket shopping when l have big or heavy items such as loo rolls, kitchen rolls, tins etc. The only trouble l have had with this is that l still think in pounds and ounces and of course these days everything is in metric, kilos and grams. It’s a good thing l have a craving for gherkins….I ended up with four kilos on my last shop.

I seem to be falling into a new routine concerning transfusions. Every week l need a pool of platelets as they have been dropping into single figures. Every two to three
weeks l need two pools of blood, l rarely get above 95 but my levels drop week by week.
Added to this my chemo every six weeks…. It goes without saying a big thank you
to all who donate blood. I know l have mentioned it before but a pool of blood costs the NHS 300.00 and Platelets require blood from three donors. I am grateful for the health care we receive in the UK, we have so much to be thankful for.

Well…. back to my list as it only has a handful of items on it so far…

PS ! Our dear friend, John Townsend who is an author has just published a new book. Many of Johns books are aimed at young people, trying to encourage them to read. In his latest book called “The stone balancer” one of the characters has MDS,
we can see that John has been reading my blog, as if this wasn’t flattering enough – he also dedicated the book to me ! That’s a first !
Plug …. The stone balancer published by Raven Books, available on Amazon !

http://www.blood.co.uk
http://www.deletebloodcancer.org.uk
http://www.mdspatientssupport.org.uk

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Changing Times!

Hello!

 

I am sure that those of you who know me well are rather amused to see me setting up a blog.

 

Nearly seven years ago I was diagnosed with MDS, a rare form of blood cancer. Since that time I have been in a “wait and watch” period; having regular three month blood tests and my annual bone marrow test.  MDS did not stop me from living a full and busy life.  I was in a job I loved surrounded by a great team of people. My job took me all over the world, but during the past couple of years I began to feel more tired and fatigued.  This is a MDS symptom.  When the opportunity arose to take a voluntary redundancy last year it seemed the right thing to do. Quite unexpectedly the month before my departure I found myself in hospital with severe pneumonia resulting in a VATS Operation. This came as quite a shock in that I felt and looked well.  A couple of months after leaving hospital a bone marrow test revealed significant changes.  I was now heading towards leukemia.

 

The time had come to take action.

 

My reason for a blogging is because I am now preparing for a stem cell transplant.  If successful, this transplant is curative.  The journey and preparation will be fairly tough.  I am extremely fortunate that my sister is a match and will be my donor.

 

I wanted to write a blog for the following reasons: 

 

I will begin isolation for several weeks.  I am usually always talking, so this will be my outlet!

 

My blog will be available to update my friends and family on my progress.

 

Many fellow MDS patients write the story of their journey.  It has been very useful for someone like me who is going into unknown territory.  Perhaps my story will help someone else.

 

It is my desire to build awareness of MDS and the various charities and organizations which support us.

 

To those readers who are young and healthy; perhaps this blog may inspire them to join the bone marrow/stem cell register.

 

My sister Heather will be adding her experience as a donor.  Sharing the process she goes through may be of interest to donors; many of whom are not known to the recipient.

 

Useful sites:     www.mdspatientsupport.org.uk

                         anthonynolan.org

 

Thank you for checking in and your support.