Moderator: Steering Committee
- Posts: 1
- Joined: 09 Mar 2016 20:37
I'm a newbie to the board and got diagnosed 4 weeks ago. ...not sure at the mo what type of mds i have a yet, but my sis has gone for bone match...fingers crossed. The problem is my mum and sis have been absolute diamonds to me, but i keep pushing them away. I was depressed before but its getting worse by the day. .. Anyone got any ideas how to cope? BTW I'm 41, had cancer 3 times before and got mds thru too much chemo. Thanx!
- Posts: 75
- Joined: 04 Mar 2013 13:01
- Location: South East England
I am sorry you are having to go through this, you will find a lot of jolly nice people here who can help and advise you. I think it's really hard to have a sort of normal when you are experiencing all the difficulties of not knowing what the diagnosis is.
I found what helped me was meditation and self hypnosis, keeping busy too, I wrote a ridiculous amount of lists, my doctor told me to write a journal, which can be useful but wasn't my sort of thing, but I did write, I wrote kids stories, I wrote the start of a novel, none of which will be ever published but it took my mind away from stuff I didn't want to be thinking about. I planned the garden, crop rotation for the allotment, did massives of Internet searches on all sort of stuff I had interests in but never had found the time to look into (I was off work awaiting surgery by this time).
Your family love you, they want to help but they will understand, try being honest and talk to them about the way you feel.
It's hard being the one with cancer, but it's hard too being the one with a family member who has cancer, been there and done it from both sides.
I hope you get some answers soon which will mean you know what comes next.
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
- Posts: 249
- Joined: 20 Nov 2008 14:05
What you are describing is not unusual - this does happen to a good few people - at different points.
You are going through a really difficult time and it requires a lot of adjustments - which is hard.
There are things you can do to gently adjust, which will help you - and your family.
There is help available - again, because it is quite common to have such problems.
You have made a great step towards helping yourself by posting on the forum. That takes some courage already.
I'd like you to make another little step - and give us a call on our helpline 02077337558 (9.30am to 6.30pm approx).
We can have a chat about how to improve things for you - and I can advise about further help if necessary.
It is also about the family understanding the issues from a different perspective.
And about you meeting other MDS patients - so you have the opportunity to speak with people who know exactly what you are going through. Many patients don't want to over-burden their families with their worries and concerns - so it is good to have a little separate outlet.
You will get through this also by getting the right information about your exact type of MDS.
This is very important - so you don't end up worrying about the "wrong" things, or some figures you read somewhere - out of context.
All this happens all the time - it is normal, as almost everyone is in shock for a while after their diagnosis.
When you are in shock - or depressed - it is difficult to take in new and complex information - especially if it is in written format. Very often, a chat with us, or sometimes a video can help a lot.
Please do ring very soon - I'd really like to talk to you Dave.
I promise it will not be scary and together we will try to find a way to cope a little better.
I look forward to hear from you Dave.
For any queries:
Call 0207 733 7558
Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
- Posts: 628
- Joined: 01 Dec 2009 21:52
- Location: Essex
Somewhat belatedly (the weeks seem to be rushing past!) I wanted to respond and, firstly, say sorry to hear of your MDS diagnosis and,secondly, hope that you have contacted Sophie for some support. Additionally, please ask your haematology doctor about additional psychological support for your depression and feelings of despair about your diagnosis. You have clearly been through this several times before but each new diagnosis needs time and help in adjusting, Sometimes, a diagnosis like this may make you want to shut everybody out and go into your shell so cut yourself some slack. There is no right way of dealing with this.
I hope you soon have more detail about your type of MDS and what the proposed treatments might be. I always felt it was more scary not knowing but once you have something concrete you can begin to adjust to what lies ahead?
Take care and try to keep open your lines of communication with your nearest and dearest.
With best wishes
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