[GillParticipant]

Stephen (my Husband) has had 2 transplants and is now on Bendomustine with a hope that if it fails Pomlidomide may help.

He has had some (not huge) reactions to all the drugs that have come with this latest stage of treatment (some of the drugs are old horrid friends eg Dex)and we both found ourselves wondering what the affects were last time. The same? Worse? Not as bad?

My suggestion is that people starting out on this journey keep a diary. It does not have to be detailed. It can be as little as "day 4 up-chucked all day" day 5 6 7 8 pretty good Day 9 "sat on loo"

Both Stephen and I wish we had got something (a good memory would be nice but I think that is age!) to compare now versus then. Just to be able to say "Oh well pretty nasty now but it will probably feel better in a day or so"

It doesn't have to be for anybody else but it could be good for people who get a huge space in between treatment and wonder if the way they feel during the second lot of treatment was anywhere near what they went through before.

Would be interested to hear other's views

Gillxx

[wendyduffieldParticipant]

I think it is a good idea and used to keep a daily diary of how I felt on treatment and what day of the cycle it was. I think my consultant used to dread me getting my notebook out but I didnt care!

[eveParticipant]

Hi Gill and Wendy

I think it,s not until you start looking back,that you begin to wonder if you remember it as it was.!!!!
When Slim was in ITU they offer you a dairy that they will right for you,because you cannot remember anything about it,so you loose so many days.

Some nurses think its a good thing,that you have no memory of it.If you asked Slim about any of his treatment you would draw a blank,and he is happy with this.Me well there is things that I do not want to remember,just keep looking ahead.
i have always kept a large file on Slim with results of test,bloods,hospital letters anything to do with the treatments he has had,and I must say,this has been the best thing i have done,as the amount of times,it is used by hospital staff,and the amount of times I can confirm a conversation ,with a written result,so they actually believe me.:-P

So my big red file has been my own dairy in a way.Eve

[MinParticipant]

Myeloma uk produces a very good diary that you can record all in regarding treatments side effects etc and would urge you all to acquire one,they are available at no charge, but don't be mean, make a small donation .you know every penny is well spent.
Min lying in bed with a minor irritating illness

[PerkymiteParticipant]

It is a very good idea and in fact I had the Myeloma UK diary but it fell by the wayside I am afriad. I do wish I had the ability to keep a diary. I have tried many times in my life but I am just not "clerical". Give me a hammer and screwdriver and I am ok but a pen makes me shudder.

Kindest regards – vasbyte

David

[Author]

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