Living and coping with Cancer

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

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red
Posts: 67
Joined: 22 May 2013 14:25
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Living and coping with Cancer

Post by red » 28 Aug 2013 21:04

Hi All,
Went to the Penny Brohn Cancer Centre on Tuesday. It is in a wonderfully delightful building which has such a feeling of calmness in every room, set in lovely grounds. First we had a guided tour and they showed us one of the 22 bedrooms in which you can stay if you decided to go on a residential course. After that we had a small break and they served a delicious drink of mangoes, banana and limes. Next we were told of the history of the centre and how the Trust came about. We had a 10 minute relaxation session and then split into several groups and brainstormed (for want of a better description) Then we discussed what we had all put down for instance how, angry, frustrated, depressed, confused, and lost many of us felt. The leader of the group talked us through this and went on to explain how many of the therapies and coping methods that they used could help us. I wont go through all the day but if you live near to a centre or can get to one I think it is well worth while. for more details see their website: http://www.pennybrohn.org
They do not charge for their courses and will even offer a small amount towards the cost of you getting to one of their centres.
Love and hugs to all,
Winnie
Red widow aged 70. MDS -20Q+t(1,9) diagnosed June 2013 on watch and wait. Lives in Somerset

Life is for living
punda milia
Posts: 22
Joined: 01 Oct 2012 14:08
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Re: Living and coping with Cancer

Post by punda milia » 05 Sep 2013 16:46

Thanks very much for giving us information on Penny Brohn Cancer Centre. It is great that you were able to visit it.

By the way, I spoke to my consultant this week about the IPSS scoring system which you had said indicated that you had a rather scary prognosis. I am in the same position as you which is why I brought up the subject. He said that each individual patient is unique and each prognosis different and we must not be frightened of the "scary stuff" - his words - on the internet.

Love
Diana
66 year female. Diagnosed with mds 2012. In 2002 treated for Non Hodgkins Lymphoma with chlorambucil. Have enlarged macrocytes, low neutrophils & low white cells. Also have Trisomy 8 & classified Intermediate 1. Now on watch & wait
red
Posts: 67
Joined: 22 May 2013 14:25
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Re: Living and coping with Cancer

Post by red » 06 Sep 2013 10:24

Dear Diana,
Lovely to hear from you. Someone attended the 1 day course followed by a 2 day stay when I went. She came from Lymington and broke her journey by staying with her sister who lived about half of the journey away from Pill, Bristol. I am going to go on a 2 day stay on the 19th November. They have other sites. Where do you live? Perhaps one is not too far away from you.
I am going to Crete on the 10th then I shall be away the weekend of the 21st as I'm going back up North to my nieces wedding.
Keep well,
Love and hugs,
Winnie
Red widow aged 70. MDS -20Q+t(1,9) diagnosed June 2013 on watch and wait. Lives in Somerset

Life is for living
punda milia
Posts: 22
Joined: 01 Oct 2012 14:08
Contact:

Re: Living and coping with Cancer

Post by punda milia » 06 Sep 2013 20:28

Hi Winnie

I live in London but I am sure I could manage to get to Bristol.

Have a wonderful holiday in Crete and enjoy your niece's wedding. I am just debating whether or not I can face the journey to visit my 94-year old mother in Malindi, Kenya. My husband does not want me to go but on the other hand he does not want to risk travelling to Africa himself! I find the heat affects my problem with very sore hands.
Look after yourself
Love
Diana
66 year female. Diagnosed with mds 2012. In 2002 treated for Non Hodgkins Lymphoma with chlorambucil. Have enlarged macrocytes, low neutrophils & low white cells. Also have Trisomy 8 & classified Intermediate 1. Now on watch & wait
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