Dad recently diagnosed - waiting and anxious

Please post here your experiences of MDS as a patient, carer, family or friend

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Re: Dad recently diagnosed - waiting and anxious

Post by Nyanko » 20 Jan 2013 18:51

Hello everybody

Since you have all been so supportive in this journey my family and I have been on for the last year, I thought you might like to know it 's reached its conclusion. Although Dad continued to get weaker and less mobile throughout November and December, he did get to see his 65th birthday (Christmas eve) and enjoy the Christmas lights he loved so much. However, on Christmas eve night he came down with what we suspect was a mild case of norovirus, which led to him spending all of Christmas day bedridden. He managed to avoid going to hospital again, though, which he had been determined to do.

After the sickness, his decline was more rapid, leading to him becoming completely bedridden about two weeks ago. Since then, we have watched him go through the typical stages of dying of cancer... you can look them up yourselves if you're curious, I won't go into it here. He finally passed away, at home as he had wanted, on the morning of Thursday 17th January - exactly one year to the day since the first blood test he had to establish the cause of his mild anemia.

What an unbelievable 12 months.

Many thanks to all of you on the boards for your help and support and best wishes to all of you who continue to live with this terrible disease.

Laura (AKA Nyanko)xx

(Here's Dad giving his father of the bride speech at my wedding in November 2011... so glad we got married before his diagnosis :cry: ) ... og_058.jpg
Posts: 335
Joined: 01 Nov 2010 17:54

Re: Dad recently diagnosed - waiting and anxious

Post by janetstanford » 22 Jan 2013 10:40

Dear Laura
i am sorry to hear your news that your dad has reached the end of his journey ... he ended it his way at home his family around him i share his wonder of Christmas lights ....being in remission from cancer i know some of the symptoms and because of this i am sure that being at home with his family gave him comfort and support
You have been an amazing Daughter and your wedding photo shows that your dad looks so happy and proud to be giving his speech taking pride in telling the world how much he loves and cares for you how lovely
you have cared and supported your parents through this difficult time you have respected you dads wishes and for that you should proud of the person you are

i do hope we on the forum did help and through this difficult time ahead we are still here should you need us
my thoughts are with your family
Take care Janet
Posts: 624
Joined: 01 Dec 2009 21:52
Location: Essex

Re: Dad recently diagnosed - waiting and anxious

Post by chris » 22 Jan 2013 16:53

Dear Laura

I was so very sorry to read this. I echo everything Janet has said so well. Your Dad must have been so relieved to have been able to stay at home for his final weeks and it is all credit to your Mum and you that you were able to do that for him.

If we have been able to ease your distress in any small way, then I am very glad we have been able to do that. It's good to be able to share our worries and ideas for coping with this disease. We should all be grateful that the MDS UK Patient Support Group exists now (only been going for about 5 years) and that it had the vision to set up this online Discussion Forum and keep on fundraising to ensure we can also get support and information from the website and the Forum meetings as well. It's bad enough having the disease but to cope unsupported doesn't bear thinking about.

My condolences to you and your family. Laura, you did all that a loving daughter could and now you and your Mum have to try to carry on. You both need to support and console each other. My Dad died of lung cancer when he was 62 and I was 34: that was nearly 29 years ago and I still feel so angry because he had always refused to give up smoking and the result was leaving my Mum to cope on her own and depriving his grandchildren of somebody they adored - some grandchildren never even got to see him. At least I had a target for my rage but in the case of MDS where, with the exception of benzene and tobacco, they are currently not able to identify a clear trigger, it does just seem so unfair. Maybe, as research continues, we will find out more and be able to prevent or cure this disease. That is my hope for the future.

With best wishes. Take care.

Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Posts: 194
Joined: 16 May 2011 11:33

Re: Dad recently diagnosed - waiting and anxious

Post by Jayne » 25 Feb 2013 22:25

Hi Laura

I haven't been on the forums for quite some time but I just wanted to say how sorry I was to hear about your Dad, bless him, and you and your Mum.

You really have been through the thick of it these last 12 months and must be feeling pretty numb and sad.

Sending you lots of love

Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
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