[nikkiParticipant]

Hi my name is Nikki and I am 36 years old, my Auntie Maggie is 71 years old she is like a mum to me and was diagnosed with multiple Myeloma 4 weeks ago. she started kemo treatment 2 weeks ago along with steriods and something else which I cannot remember the name of. She used to be a lady who had so much energy and full of life. I have watched her over the past 3 months loose all her energy and vitality, at first we thought that she had a bad virus with flu like symptoms but when the tiredness didnt go away we knew that it must be something more. then she had a lump on her jaw she thought was an absess,which turned out to be a broken jaw and after many investigations she was told that she has leisions on her jaw, skill, ribs,spine and in her hip. She is 71 yeas old. Maggie has only had 1 week of Kemo as she is now in hospital with a bad chest infection caused (so I am told) by the fact that she cannot breathe properly due to the fractures in her ribs. She cannot take the kemo at the moment due to the infection and seems to have got so much worst in the last 10 days since being admited to hospital. She is having trouble breathing and her whole body has swolen. I was looking at the website and thought that I might give me some support and maybe some answers as to what we can expect for her future. I of course want her to get better and hate to see her suffering but am unsure of what her future may bring. I dont seem to be able to get any straight answers from the medical team especailly as I am not her daughter,sorry for the long message really hope that someone can reassure me everything will get better.x

[eveParticipant]

Hi Nikki
Your Auntie maggie seems to be one tough cookie to not realise she had a broken jaw, lesions are often there in advanced myeloma they should respond to treatment sounds if Maggie is on CTD which which is first line treatment.

The issue seems more to do with your aunties lung situation,swelling when people are bed ridden is usually fluid which quickly goes once up and about,the danger seems more in lack of mobility,so they should try to get her moving as much as possibly ,it often looks worst if someone has been very active,If your aunt has no children,take the lead and insist on speaking to who ever it is in charge of your Maggie this is not the time to sit back.

They will stop treatment if other issues arrive,this will be there first priority ,then get Maggie on her feet,before she starts treatment again.
I am sorry I cannot reassure you,your auntie is in the best place at this present time,but there is no reason why the family cannot be kept informed.
My advice would be be there as much as possible food and fluid given as much as possible,and keep her spirit up. Eve

[nikkiParticipant]

Thanks Eve, so nice to have a reply from someone who knows what I may be feeling. Maggie does have 3 children so it is difficult for me to get any info out of the hospital. I will try and get her to have a walk along the corridors if nothing else, she is eating well and drinking more than she has in her life since they are monitoring her fluid intake, surprising what you can do when you know that it is being written down on a chart! I think the hardest part of all is that no one is really telling any of us how serious her condition is. It is only when reading some of the other posts on here that you can gauge where on the path she may be. Sometimes I think the truth no matter how harsh would be better than us left guessing and hoping. It is so great the people like me can be understood on this website. I feel better already that I can ask questions and even if no one has the answers people will understand how you feel, Thanks again and I hope you are well.x

[mhnevillParticipant]

Dear Nikki

Sorry about your Aunt. It sound as if she is having a dreadful time. I am sure they will get on top of her infection soon and she will be able to resume her treatment. They will no doubt also give her monthly infusions for her bones which should help prevent more problems.

Do you get on with her daughters? Maybe they could tell the Hospital it is alright to talk to you. Mind you, these days, patient confidentiality is almost taken to extremes.

You auint is lucky to ahve a caring neice.

All best wishes to you both.

Mavis

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