[AliParticipant]

Hi Ann

I dont know if this will help you but my Mum also developed a shelf like mass around her abdomen whilst on treatment (RCD) you could see it and also feel it when you rubbed your hands down her tummy area. She said it restricted the amount of food she ate – so little and often was the order of the day. She said sometimes she felt so full she had difficulty drinking her quota of water and felt like she had to stretch herself out to get it down, or sometimes stand up! Good news is the shelf disappeared after treatment finished and she back to her old self again.

Love Alison

[AliParticipant]

Hi Rachael

Im sorry you have had to join the site but a very big welcome to you. Its been a godsend to me since my lovely Mum was diagnosed November 2011 aged 57.

Im sure you will find lots of information on here as I have. You can also ring the nurse (as I have done a few times) if you have concerns/questions, and someone always "pops" into the forum to help when you post.

When my Mum was diagnosed it felt like the end of the world to me, shes had 5 cycles of RCD and is now waiting for SCT. I try to go to all hospital appointments with her and my Dad and I sit in the corner with my jotter writing everything down as we found early on that "it goes in one ear and out the other".

Keep in touch

Love Alison xx

[AliParticipant]

Hi Dai

Cant help you with the sleeping pill question, but I know for sure that if you made me watch the football I would be asleep in an instant!>:-)

Hope you get a good nights rest

Ali x

[AliParticipant]

Hi Karen

Im Alison, my Mum has MM and was diagnosed last November.

Yes I agree with Eve. I work as admin for NHS and anything to do with the C word should be prioritised as urgent and should be seen within 2 weeks. In my mums case it was 2 weeks to the day, and what an awful long wait that was.

I hope you dont have to wait too much longer now, press your gp.

Take care Alison

[AliParticipant]

I will try to continue… her pps got to <2 from the RCD, we just dont want that to be in vain.

Thanks for your response Dai, we went to look around the unit and it seems wonderful and the nursing staff were very friendly and helpful. Even the fact that parking is free for families is brilliant. We just want this stage to be over swiftly, everything is on hold, im sure you know!

Mums symptoms seem to be returning, fatigue and bone pain and she hasnt been monitored for 6 weeks and has missed 2 zometa sessions. I thought when on a trial she would get better attention than this?

We are possitive all the way…its the only way to be:-)

Love Alison x

[AliParticipant]

Her pps got to <2. She has had no zometa or any monitoring for weeks now. I thought that being on the trial meant you were monitored closely?.

Feel really useless at the moment, what with the bank hols trying to contact members of staff is proving tricky. I also dont want to make a nuisance of myself but at the end of the day its my Mum and I want her to get the best care possible.

Sorry for the moan!

Love Alison Ps Im glad you had a wonderful holiday!

[AliParticipant]

Hi Helen

Thanks for your response. My Mum is attending Nottingham City Hospital. We were told 3 weeks ago that the Hickman line would take 2 weeks to arrive, then would go in to have it fitted at the xray dept, when my Dad chased this up he was told that there was a backlog at the xray dept and it could be early July before she will be called in. I just feel its too long to wait, all the good the first treatment did will be in vain?. Her pps got to <2. She has had no zometa or any monitoring for weeks now. I thought that being on the trial meant you were monitored closely?.

Feel really useless at the moment, what with the bank hols trying to contact members of staff is proving tricky. I also dont want to make a nuisance of myself but at the end of the day its my Mum and I want her to get the best care possible.

Sorry for the moan!

Love Alison Ps Im glad you had a wonderful holiday!

[AliParticipant]

Hi Jen

Im sorry your Dad has been diagnosed. I cannot answer your questions im afraid, but im sure someone will pop in who can.

My Mum was diagnosed in November last year aged 57. We had never heard of Myeloma. It has been a huge shock to us all as a family so I understand what you are going through. Please try not to look at other websites, they scared me witless, you will find lots of info and support on here.

I hope today went ok at the hospital, I find it useful to take notes at the appointments so I take my jotter!

Best of luck with everything

Kind regards Alison xx

[AliParticipant]

Hi Eve

I think you are right there is a blip and I am unable to post under a new discussion.

I will try again later…

Hope Slim is doing well after his SCT.

Love Alison

[AliParticipant]

Hi Jacqui

Fantastic news to hear! Well done you, it gives me great hope for my Mums soon to be SCT.

What a relief for you and your family.

To be honest I have lots of questions but do not know where to start?!

Rest up and take care Jacqui

Love and hugs Alison xx

[AliParticipant]

Hi Eve

What a relief for you both for Slim to be home.

Take care

Alison

[AliParticipant]

Hi Paul,

Im sorry to hear your last treatment has not achieved the desired effect. No wonder you feel p****d off. Just read the article on DTPACE that Dai posted, please think positive thoughts, let this be the one to kick the PPs into touch.

Isnt it "Eee by gum?" lol

Take care

Alison

[AliParticipant]

Hi Paul, thanks for the reply.

I hope you are feeling well? now after your week in hospital.

Take it easy Ali 🙂

[AliParticipant]

Hi Antoinette

Im Alison, its my Mum with MM, she was diagnosed last Nov aged 57.

I can only imagine how you are feeling about your diagnosis, we are a similar age im 37 I have 2 boys aged 8 and 5 and I know that as a Mum you worry about the kids rather than yourself.

Im sure you will find this site to have all the information you need and the gang on this forum are very supportive and will try and answer any questions you have, also you can phone Ellen the nurse (i have done so a few times and she is lovely).

I hope it reassures you a little to know that my Mum started her treatment in December, she has had 5 cycles of Revlamid, Dexamethasone and Cyclophosphomide and whilst during some parts of each month was a little shaky and tired, it really was not as bad as she feared. In fact she continued to say she felt better than she had done in ages! She kept a diary of how she was feeling day to day so the next month she could anticipate how she would be feeling and plan her time accordingly. So the treatment worked rather well ( achieving a very good partial remission) and now moves on to SCT in a couple of weeks….so watch this space!

Please keep in touch

Big hugs to you and your kids 🙂

Alison

[AliParticipant]

Hi Trish and Jacqui

I have just found out they have Caphosol it on the ward my Mum is going on. Thats another question off my list!

Alison x

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