Jane  D
Posted by

I am too young for this!

Jane  D
Posted by
09 Jan 2015

I have recently been diagnosed with MDS, RARS. I am too young and have 2 young children at home. This condition according to my haematologist is the mild form and I have a good prognosis. However, I have fear of the unknown. I have turned everything over to God but have to keep reminiding myself that it is out of my control. I just don't understand how I could have gotten something like this.... Does anyone have the same doubts and fears? I do not have any symptoms related to the disease. However, I have new symptoms related to anxiety that make my life less joyful than it used to be. How do people cope with this?

Comments

12.01.2015

Hi Jane,

Really sorry to hear about your recent diagnosis with MDS which obviously came as a real shock. It was the same for me when I was diagnosed although looking back it was clear that things weren't right.

Diagnosis is without question the most difficult time for patients and their families as you've got so much to get your head round and you get bombarded with so much information. You also have to deal with the difficulty of telling friends and family and as a result it can all get a little overwhelming which is totally understandable.

It's perfectly normal, too, that you are asking the questions and having the doubts that you're having and the important thing to appreciate is that help and support is out there to help you, starting with your consultant. He/she is your first port of call and if you are unsure or have any questions about your condition then do ask them as they might be able to allay some of your concerns.

We also have a lot of information about MDS available on the website which might be of interest to you including downloadable and print booklets on the condition, treatment options, possible side-effects and prognosis: https://leukaemialymphomaresearch.org.uk/information/other-blood-cancers...

In addition, we have blogs by other patients who have MDS which you might find of some reassurance going forwards:

https://leukaemialymphomaresearch.org.uk/news-item/my-mds-journey

https://leukaemialymphomaresearch.org.uk/news-item/my-battle-mds

Last and by no means least, we're here to help in any way that we can and if we can't help will point you in the direction of someone who will be able to help you so please don't hesitate to get in touch at any time.

You're not alone in this! 

Anonymous
12.01.2015

Dear Jane

I am so sorry you are feeling like this, but I do understand.

I was diagnosed with MDS RCMD in 2011 when I was 41. My children were 13 and 15.

Shortly after diagnosis I remember being totally consumed with grief and sadness, mostly around being afraid that I might not see my children grow up.

I did a few things that really helped me. I read a book 'How the Mind can heal the Body' by David Hamilton. Whilst I knew I was too poorly to heal myself I did think that if I could have a happier and more connected mind and body I had a better chance of getting better. This was the beginning of my journey.

I also practiced gratitude. Being thankful for all the beautiful and precious things in my life that I was lucky to have, i.e. husband, children, family, friends, a nice home, a sunny day....anything! By focussing on the good things and filling myself up with love and gratitude I wasn't focusing on my illness or allowing it to fill me with fear.

One day I was in my dining room and I couldn't breathe properly, I couldn't fill my lungs. Because I didn't make my red cells properly I put 2 and 2 together, came up with about 102 and decided I was deteriorating. I had a blood test. It came back the same. I decided that although I was 'happy' and I was, I was obviously anxious. Sometimes we just don't realise how stressed and anxious we are, but our bodies tell us. I bought a meditating cd. From the first time I meditated I have not struggled with my breath. Amazing. It also helped me cope with all the challenges I faced, and believe me, things were always changing but through meditation I faced them more calmly and felt peaceful.

I also visualised my future (which is something I learnt about with How the Mind can Heal the Body), I was very clear and certain on the future I wanted.

Unfortunately, I deteriorated very quickly and just 7 months later (but remember my diagnosis was different to yours), I had deteriorated and needed to start treatment very quickly (I was progressing to AML). I had a bone marrow transplant in July 2012. I used all of the above 'tips' to get me through and they worked.

I'm not sure if Andy has given you the blog of my actual transplant journey (www.caringbridge.org/visit/jaynesnell) but take a look if you want an insight into the transplant process.

I am very happy to tell you I am now 45, my son is 19 tomorrow and my daughter is 17 in February. My dreams are coming true, I am getting to see them grow up.

I am 100% donor, I feel amazing.....normal. How fantastic is that.

Yes this is a horrible illness but there are cures out there. For some cancers they do not have that hope, so in one way at least that is one thing to be grateful for.

I am thinking of you, I remember that fear so I hope you find a way to find peace and happiness and enjoy your family, friends and life. Do not allow cancer to steal that.

Sending you lots and lots of love
Jayne
PS Look me up on Facebook and connect if you wish. xxx

Anonymous
13.01.2015

Thank you for the replies! I realize I am not alone with this disease. Just wish I didn't have it! I have a second opinion set up at MD Anderson to hopefully get better answers for the future. My hematologist insists that this is not bad and I shouldn't worry but I am still worried!

Anonymous
16.01.2015

Hi I got diagnosed last week, I was told it was chronic leukaemia and as yourself not to worry.I have done nothing but worry and am ignorant as to understanding what the future holds

Anonymous
16.01.2015

Polly,
What is your type of MDS? What did bone marrow report say?
These 2 things help determine the course of the disease.
Remember that it is God's will for health and to live a joyous life! Pray for healing and for a sound mind. That is what I am doing and it really does help!