[brochoParticipant]

Hi Everyone just thought I would share my good news After discussing me and reviewing my mri images my nurse rang to tell me there is no evidence of any new activity or lesions !! I must admit that is a huge reief I had been very anxious the beast was on the way back!! So now they are referring me to the palliative care team to change my pain relief to possibly Fentanyl patches. Gaye are you under the palliative care team ? I saw the other day you are still in awful pain , its been so long you must be desperate for some relief, I think of you often and just wish they would sort you out soon love Bridget xx

[AMcGuireParticipant]

Phew!! This is fantastic news Bridget … what a great week for good news for everyone. Yay!!

John used to take MST and Severedol (I think thats what you take isn't it?). Those were stopped a few years back as his pain was so bad.

Fentanyl patches have worked great for John, took a bit of jiggery-pokery to get the right strength for him; they'll probably start you off on a low dose and increase to suit your comfort.

For breakthrough pain John has Abstral (a wee tablet that disolves under his tongue for instant relief usually when he's hurt himself and needs a superfast remedy), and OxyNorm (tablets he takes through the course of the day when he feels pain). He's also got Lidocaine patches which numb the area they are attached to, for John its the bottom of his back. This combination of patches and tablets seems to work for John.

Don't think it does any harm to have your medication tweaked now and again, and certainly if you gain a bit of "near-normality" back then that is also a big relief.

Wishing you well Bridget and hope you get started on something quick to help with your pain.

Sending love
Angelina xx

[DaiCroParticipant]

😎 😀 🙂

[MinParticipant]

Brilliant News Bridget.
What a relief. I am so pleased for you.
Those worries in the middle of a dark night always frighten you half to death.
Sunshine in the morning is a great leveller. Perhaps when you get some new pain killers you can carry on where you left off with the spring cleaning.LOL Just don't do more than your body tells you.
Love MIn

[jmsmythParticipant]

Bridget what brilliant news. I am so glad to hear more good news. Now those horrible night demons will take a hike. So take it easy on the housework. I had a boss years ago and she always said "there is an acceptable level of dust", something I live by. (that's my excuse and I'm sticking to it)

Good on you!

Love Jean xx

[MariParticipant]

Phew, I am so chuffed for you, all we need now is for them to sort out your pain, and Gaye's too. Surely in this day and age no one should suffer pain like this without them being able to do something about it.

On the housework front, remeber what Quentin Crisp said, after the first two years it does not get any worse! It works for me.

Look after yourself,

love Mari xx

[KWilsonParticipant]

Great that the scan has cleared you and hope it settles – it's all a complete mystery why symptoms come and go for no apparant reason! It's hard to know when your 'good' days will be and it's natural to take full advantage when you get one but you always seem to have to pay a price for them.

Gaye, I'm so sorry to see that your RT didn't work. i hope you get a solution to your pain very soon.

xxxxxxxxxxx

[GayeParticipant]

Hello all you lovely people. I wish I could spend more time on here but my energy levels just won't let me. I have been reading some of your postings with various good ones and not so good.

My latest is that the Pomalidomide is keeping the myeloma steady but no world breaking figures. It sounds like lots of you are in pain with various ways of dealing with it I hate painkillers as they make me feel like a complete moron – can't string a sentence together and could sleep for England. Yes, Bridget I am under palliative care as well as anything else that may come along. I am seeing the spinal surgeon at the Royal London this Thursday to discuss a possible kyphoplasty. I know there is no cure but I would like if possible not be doubled up in pain. I think that none of us deserves excruciating pain.

Love to you all and keep being positive.

Much love, Gaye xx

[tomParticipant]

Hi Gaye

Dont we know (or most of us do) about being blooming weary:-S I never know when am getting? (or do i just choose to ignore it?) but my young bride Elaine knows it well:-D so in that matter its all looked after

Good Luck on Thursday 😀 and dont let them make poodles with the Balloons he he

Love and Hugs

Tom "Onwards and Upwards" xxx

[AMcGuireParticipant]

Awe Gaye, bless you. What a rough time you're having.

Hope you get some good news on Thursday with the surgeon, anything that will help is a big step in the right direction. Comfort is paramount so do what you have to do for a bit of relief if thats at all possible.

Sending you healing thoughts meantime.

Much love,
Angelina xx

[DaiCroParticipant]

Gaye, you are an Angel. 😀 🙂 😀

You have been an inspiration, confidante, caregiver and friend to me and to so many on this board. I hate the idea of you having to endure pain 🙁 – it was the first thing said to me after my eventual prognosis back in June '09 – 'at least in this day and age, from this point forward, you will not have to worry about the sort of pain that you have had to endure up to now… and that's a guarantee.' And they have been right. 😎

Someone can sort this out for you, I just know it – and if it takes the surgery then please take it my love. 🙂

Dai. xxx

[susannahParticipant]

Dear Gaye Im so sorry to hear you are not to well,i do miss reading your posts. You have always been so supportive over the years, i only wish you lived near by and i could pop in and support you

Take care
love
Sue

[BADGERParticipant]

hELLO gAYE

So sorry your RT treament has not worked I hope they can sort you out and give you some relief:-) glad the pomalidomide is holding the MM lets hope it soon starts to get rid of it my thoughts are with you

Love Jo xx

[BADGERParticipant]

Hello Kath

just wondering how you are as you havnt posted just lately I hope you are ok 🙂

Love Jo xx

[zasrsParticipant]

Hi Gaye

I do hope the drs can sort out your pain soon, every day with pain is a day too many. gordon was told as dai was that his pain was controlable and most of the time it has been. good luck and hopefully you can keep us posted with your progress

With love

sarah xx

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