[michelleakitt29Participant]

Hi Annie
Mum is doing quite well at the moment, she too was diagnosed just over a year after she retired, she is only 65 now. She is responding very well to Revlimid and her proteins are down to 2 that is the lowest it has ever been. The consultant said that when she was diagnosed it was the worst case of bone damage that he has ever seen on diagnosis, she is still in lots of pain but doin great, She has handled the whole thing by burying her head in the sand, but it works for her.
I am sure that you wont be waiting too long for the orthopods to get back to you. How old are you if you dont mind me asking? I work within a palliative care setting and would say that we have had 3 patients with this disease in the last 18 months. what type of nursing did you do? I sort of assumed that you had medical background with the technical terminology that you was using. By the way i found a lot of help at the support groups and met lovely, friendly and helpful people there,
with love michelle x

[michelleakitt29Participant]

Hi Sandie

Good to hear that your mum is feeling fit and well, and just to say that I hope your scans are clear, you must be feeling really freaked out by the whole process, and yep work certainly does have its bonus points sometimes.

Good luck and keep us posted when you get your results.

with love michelle x

[michelleakitt29Participant]

Hi David

sounds like your doing really great, especially seeing as no consultant appointments for 8 wks…WOW….fantastic. As Bridget says I hope that your pics show nothing more than creaky bones! Good luck.

with love michelle x

[michelleakitt29Participant]

Hi Ann
I am sorry that you are having problems, however, I think you really need to wait for your appointment with the orthopeadic surgeon, to find out what is really going on, it is really common to have problems around the hip and pelvic area, My Mums main problem is in her back. The main areas for bone deterioration is back, ribs, pelvis and skull, although as we all know myeloma affects every bone in your body really. It seems that you are being looked after and that when problems arise these are being dealt with straight away. I hope that you are not waiting too long for your appointment with the surgeon. Take positives that your bloods are ok, which hopefully means that the myeloma is not active for you yet. I wish you luck and keep us informed how you get on.
with love michelle x

[michelleakitt29Participant]

Hi Tom

Well if I can bring a smile to someones face then I'm doing my job right on here lol!!

My Mum calls them her nashers!!

I cant stand the bloomin things, be hopes I never have to have them, cos I have a real phobia with them ha ha.

but will defo mention the toothpaste and see whether they think it is worth while trying it though.

with love michelle ("onwards and upwards") x x x

[michelleakitt29Participant]

Hi All

Mum didnt seem to have any side effects at all, she is still much the same, the tiredness seems to be getting worse not better tho!!

No point in telling Mum about the toothpaste she only has 3 of her own teeth and the rest are falsies lol, but she would much prefer it if the last 3 just fell out.

much love michelle "Onwards and Upwards" x x

[michelleakitt29Participant]

Hi Hils

Never feel guilty, we are all different and all need to know things at different stages, not one person is the same. You can do your own research, but it doesn't mean you have to tell your brother, this is your private time.

with much love michelle x x

[michelleakitt29Participant]

P.s I have just sent you a private message x

[michelleakitt29Participant]

Hi Dai

Yep dont i know that, at the mo my eldest going thro something similar from his own email!! which we are trying to prove that he did not send, its driving me nuts! how do people do that?? and why?? My son is really depressed over the whole thing and he is only 17 and he has been suspended from college cos of it! I am so upset and cant stop crying and neither can he.

with much love michelle x x

[michelleakitt29Participant]

Hi Dai

I think i agree that is defo a scam mail, be careful!! I would ring Myeloma UK I think and ask them? Please don't answer that email, sounds very dodgy to me, as far as I am aware no one in myeloma uses hotmail, they all have their own email thro myelomauk.

Please let us know what you find out

with love michelle x x

[michelleakitt29Participant]

Hi All

I can now confirm that the infusion Mum had was Zometa, I am sure thats not what the specialist nurse said, but hey ho I was definately in a non listening mode yday!! It took around 30 mins all in all as she had already had her blood tests on wednesday, she is back on magnesium cos thats low, but other than that she is well, and managed to eat all her dinner at wetherspoons were we went for dinner after her infusion (and managed to stay awake lol).
Thank you to you all for you messages, it really means alot, love you guys so much for all your input.

with much love michelle x x

"Onwards and Upwards" Tom, i so cant help putting that x x

[michelleakitt29Participant]

Thanks

Gaye that could may well be it!! was not really taking in what she said, which is not me……got lots going on at the minute, Not that that should be an excuse really!! I am hoping to get up to the hospital today, so will try and get the proper name for it. Ha ha yep Onwards and Upwards certainly should have been the new name. Please let me know how you get on with your infusion too, very interested to find out more one these.

David she does take something once a wk on a thurs, think that is something to do with her bones too.

She does have a lot of bone damage, so anything that will help is taken with open arms.

with much love michelle x x

[michelleakitt29Participant]

Hi David

What fabulous news, great to hear! Dont do too much, take it easy with the cycling.

with love michelle x x

[michelleakitt29Participant]

Hi (sorry you didnt put your name)

It is awful and comes as such a blow when someone we love is diagnosed with Myeloma. My Mum was diagnosed in july 09 at the age of 64, how old is your brother? My mum herself buries her head and so does my dad, I joined this site not long after she was diagnosed and found help, support and most of all friendship from everyone on here.

It sounds like your brother just wants to carry on as normal (whatever normal is), it has done my mum good to ignore the illness, we are getting so much more time from her that I think we would have, you know what the say "ignorance is bliss" and it works for some!

You do not have to bury your head in the sand if you dont want to! I needed to know everything, it helps me knowing (I think). Even us on here can only assume how you feel, everyone feels different things at different times, if you have any questions at all feel free to ask, there is always someone on here that can give you advise or help.

I wish your brother well with his SCT (sorry i cant help you with that one) keep in touch and come on here whenever you want, we are all here for you.

with love michelle x x

[michelleakitt29Participant]

Hi Keith

Sorry to hear that you have had your worst fears confirmed, I am wishing you look for monday. Keep touch and let us know how you get on.

with much love michelle x

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