[gina45Participant]

Went to the hospital today for her 8 weekly visit. when we got there we was met by Steven the hematology nurse, he said you have drawn the short straw today sorry( steven is lovely and is the one person my mum really likes at the hospital, he does her biopsys etc.)

When we went in he said that he couldnt understand why my mum was put on his list as he normally sees the stable not complicated patients. He said that mum has a little Anaemia her blood is 10.4, he said they dont do blood transfusions unless they are less than 9. Her whits blood cells have dropped slightly, her paraproteins have risen from 31 to 42.
He then proceeded to say that they are coming to the point where mum will need treatment again as the signs are there that the myeloma is active, he also said her bone marrow has 14% myeloma which isnt too bad.

He said this is why he couldnt understand why mum had been put on his list as he cant decide about treatment it has to be the consultant.
He is going to speak to the nurse as to why this has happened and couldnt apologise enough, though it isnt is fault and he said he was sorry it was a wasted journey.we dont think it was as he told us more than the consultant did.
He also has asked for mum to speak to a lady who is looking into the cancer link within families. He said she will fill in a questionnare with mum to see if there is a link with other cancers with blood relatives. She will give them some blood to analyse as well. ( my uncle and grandad both died of lung cancer) Although not a blood relative to mum my dad died of stomack cancer.
We will see what happens.
Anyway sorry for the ranting on but just had to get it off my chest.
Gina x

[eveParticipant]

Hi Gina

You rant all you like,I have done alot of ranting on this Forum,it does feel better once you get it off your chest,and it gives the people on here a chance to support you,it must be a worrying time for both of you.
I can only speak for myself but so many people have helped me,and I am so grateful.[ it is my husband with mm ]

At least you have had time to read up on mm and mentally prepare yourself,I take it you will have an appointment with consultant?Let us know how your mum gets on,from what you say its early days and has been found early which I think is half the battle. These myeloma trials offer a lot of hope.
good luck to you and your mum. Best wishers eve

[DaiCroParticipant]

However good your lead nurse this is a consultancy mater and your consultant should have made sure that you were seen for a full explanation IMHO. As Eve says, its early days but I'd be pushing for a full consultancy meeting sooner rather than later, you deserve that for sure.

Dai.

[gina45Participant]

Thank you so much for your replies,
Steven told my mum that the consultant that put mum on the list was only there for so long, but a new permanent consultant starts on the 20th June, he said he will try to get mum an appointment for that week so hopefully we will be going very soon.
Mum isnt too well at the moment and cant even go into the kitchen without getting out of breath, she has been getting pains in her side and some pains in the side of her head. So you can imagine why we are worrying, but im hoping that once they start her on her chemo again she might start to feel better. There are two options of treatment 1 is to give her the same treatment as before Thal, Chemo, and steropids or velcrade which is the one that is fed through a drip i believe. The consultant i assume will tell us which is best.

Steven said that some consultants believe that you should challenge the Myeloma with the same treatment and some believe to start a new course. So i dont know.

Thank you again for your support and replies it is most appreciated
Gina x

[brochoParticipant]

Hi Gina sorry mum is feeling rotten and it must be very worrying for you At least at UCH they are very good at getting a plan pf treatment together quickly But if the breathlessness continues I would ring them on Monday , they may be able to ease it before she sees the consultant Please give mum my best wishes love Bridget x

[gina45Participant]

Thank you Bridget, i am going to ring the doctors on monday just to get her checked, i also want them to look at a lump at the top of her back, it may be just a cyst but better safe than sorry.
Thank you again
Gina x

[tomParticipant]

Hi Gina

Sorry to read about your Mum's plight, I hope that Mum is now being seen and her pain is being taken care of.

Love and Hugs to you both

Tom xxxxx

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