[julienewcastleParticipant]

Hi Mavis

Many thanks for your post – it’s great to hear of other people’s experiences as I start on my Myeloma journey!

My two bugbears at the moment are being wide awake at 3am and not being able to get back off to sleep and my mouth.  For the past few days I’ve taken a sleeping tablet when I go to the loo at midnight and they worked! However, the doctor only gave me a few and I don’t want to become dependent on them and as you say, they leave a vile metallic taste in my mouth all day. I love crisps too but can’t eat them now as my tongue is sore (due to sucking boiled sweets?)

Hearing your brilliant news about remission gave me a massive boost!!  I’m only just coming to terms with the fact I have cancer. At first I didn’t feel too poorly but as my 3rd course is ending I have no energy and struggle on some days. I have to take steroids every day due my Thalidomide rash so that doesn’t help! I want to eat all the time and have put on loads of weight which has upset me so hearing you’ve lost weight now was another boost to my morale!

I’m so glad you got in touch – good luck for the future!

Julienewcastle

[julienewcastleParticipant]

Hi Julie

Thank you for your reply to my recent message.  I’ve been reading your posts and I’m sorry to see you’re having such a tough time.  Like you, my diagnosis in July came as an complete shock – my GP sent me to the RVI for blood tests as he was unsure what was up with me.  I’d never heard of Myeloma and I’m still finding it hard to come to terms with it all.  My first course of treatment caused me some problems too; I had to go into hospital twice with different infections but I was looked after so well and I wasn’t in for long.  I’m half way through my 3rd course and I’m the opposite to you – eating far too much!!  Like you, sleep is elusive and it must be so hard for you with a young child to look after.  I’m 58 and am learning to listen to my body more; I do too much then become exhausted and shaky.  I do hope things will improve for you, take care

Julie newcastle

[Author]

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