Not understanding everything thats going to be happening to

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Magz1968
Posts: 9
Joined: 03 May 2013 17:05
Location: Peterhead aberdeenshire
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Not understanding everything thats going to be happening to

Post by Magz1968 » 19 Nov 2013 14:14

Hiya everyone hope your all well ..

I have. Just had my seconed biopsy and my mds hsnt changed much from april .. And was in hospital from june to august started of with appendix being taken out then week llater 8 inches off bowel ihen contraced pyoderma gangrenosum .. Seemly common with mds suffers ..! Im still feeling very tiered to which gets me so low and depressed .. As i cant seem to do all the things i used to do im only 45 .. :cry: does anyone else feel same of low moods ? .... I had app with consultant other week there and transplant is the plan im just awaiting word from glasgow to go down and havea chat about it all and fingers x i could be starting transplant feb or march ..( but tis is just consultant saying of top of his head ) Is there any thing i can do to help myself get head round everything ..? I seem to only half take everything in :-( does any one else have memory loss i seem to have it bad which gets to me aswell ... :cry: any help or chat would be appreciated thank you xx
[color=#404000]life has knoked me downa few time .showed me some thingsi didnt want to see one thing for sure i always get back up fighting .[/color]
MollyP
Posts: 75
Joined: 04 Mar 2013 13:01
Location: South East England
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Re: Not understanding everything thats going to be happening

Post by MollyP » 19 Nov 2013 17:29

Dear Magz

I know when I was poorly and my head wasn't up to understanding what was happening to me I found it really useful to take someone with me to appointments and if necessary be a note taker. Then you can refer again to what was said and perhaps discuss it with whoever went with you too.

I hope you feel a lot better soon

Best wishes
Molly
Xxxxx
*** *** *** ***
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)
chris
Posts: 754
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Not understanding everything thats going to be happening

Post by chris » 25 Nov 2013 17:55

Dear Magz

It's all a lot to take on board. Also, do ring Sophie who can help you to understand what is happening. It sounds as though you are likely to have a stem cell transplant early next year, so I wish you well with that.

best wishes

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
Magz1968
Posts: 9
Joined: 03 May 2013 17:05
Location: Peterhead aberdeenshire
Contact:

Re: Not understanding everything thats going to be happening

Post by Magz1968 » 15 Jan 2014 14:51

Thank you

Yes i always take my partner with me to app .. But me being me i dont really talk about it much partner takes in all the details x the i dont liek talking to him about it allx silly i know x

:( :(

Yeah im penciled in for transplant in march and all scared about that now aswell x:-( :cry:
[color=#404000]life has knoked me downa few time .showed me some thingsi didnt want to see one thing for sure i always get back up fighting .[/color]
chris
Posts: 754
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Not understanding everything thats going to be happening

Post by chris » 20 Jan 2014 15:39

Dear Magz

It might be worth talking to a Macmillan Counsellor if you are worried about talking to your partner. It might help to clarify things in your mind and give you more confidence to do some of the talking at appointments?

Try to get a copy of The Seven Steps as it has lots of useful information about stem cell transplants. You can get it free from all sorts of places or talk to Sophie who may be able to send you one?

Best of luck with it all

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
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