Christina was diagnosed in 2009 with MDS/RARS at her local hospital in West Sussex by Dr Narat and has been treated at Kings since 2011. Read Christina's story and her helpful TIPS TO STAY POSITIVE WITH MDS.
First I asked "Why me?" then started to make adjustments
I was diagnosed in 2009 with MDS/RARS at my local hospital in West Sussex by Dr Narat and have been treated at Kings since 2011.
In 2009 and 2010 I was able to lead my normal hectic life, playing golf, and travelling overseas to visit two of our daughters but by March 2011 had become transfusion dependent so after another bone marrow test at Kings I was prescribed medication.
In 2009 I did ask “Why Me” but being a member of a golf club where the age group is similar you become to realize that many people have far worse illnesses and are coping with a lot more painful treatment. Ok, so I did feel extremely tired some days but compared to some I was the lucky one.
From 2011 I managed my medication here and abroad and was able to make adjustments to my life without too much heartache. Because nobody knows what tomorrow will bring I learned to enjoy each day as it comes.
Then, two years ago I had a change of medication, and I have been on Revlimid and still on GCSF and Epo ever since. This seems to be keeping my counts stable and although a few very minor side effects I feel able to cope with most of what life throws at me and lead a normal life.
So here are my tips for staying positive.
Tips to stay positive with MDS
I have accepted that first thing in the morning I am not going to leap out of bed, my whole body aches so I take it slowly and after breakfast and injections etc I potter around and by tenish I feel human and able to cope with almost anything.
I still play golf a couple of times a week and being a competitive person have to remind myself each time how lucky I am just to be out in the sunshine, this doesn’t always work, but am working on it.
I work a few hours a week in our village coffee shop which I enjoy and make sure that on those days nothing is planned for the evening except a beer or a glass of prosecco and dinner is something we can just pop in the oven.
When I am travelling I use one of the two fantastic cool bags my daughter bought on line for me from America they keep my injections at the correct temperature, they are Polar Bear and Insul Pack and keep cool for around 16 hours, I also get the stewards on the aircraft to store them in their cool cupboards and always have a thermometer to test the temp. of fridges.
Because of appointments I wasn’t able to go for so long this year but still managed 6 weeks and used the wonderful haematology departments in New Zealand to have a regular blood test. I also always travel with my notes and have all my counts documented from day one.
We live on the edge of some beautiful woods so I know it will do me more good to take a walk than do housework. I no longer do hovering that’s my husbands job and I am making myself ask for help and not to feel like I am the only person who can do a job properly.
My husband, 3 daughters and grandsons have all been so supportive and the first thing I do when leaving Kings is to text my results around the world. My daughter who lives in Singapore knows as much about MDS as I do. Fraser my grandson in NZ shaved his hair for blood cancer at school and also is now giving blood, very proud of him.
I try to attend the MDS Local Forums which I have always found so helpful and met such great people, we are all so different but so comforting to hear others stories.
I have found CUFITTER "Fighting Cancer with Fitness" through The CUFITTER Pathway. Their exercise specialists support you through a program to aid you through your cancer journey.
Discovering CUFITTER: Fighting Cancer with Fitness
Through the support and care from Kings I count myself very lucky. Another piece of luck is that I have found CUFITTER "Fighting Cancer with Fitness" through The CUFITTER Pathway. Their exercise specialists support you through a program to aid you through your cancer journey. Clinical research now supports the view that if people reach a certain level of activity which can be relatively modest they will more than double their chances of surviving cancer.
Their wish is to have a CUFITTER across the country.
Please have a look at their website. I have met an amazing bunch of people and, through exercise, have had lots of fun. Everyone is very positive and forward thinking, all of us trying to boost our stamina to enable us to keep fighting. I hope if all continues to be good to yet again visit my family around the world.
Keeping positive is so important and I do know that's not always easy, however we must try, hopefully 2017 will be good for us all.
