[jenmikeParticipant]

My husband Michael was diagnosed with MM three years ago. He has had CTD, Stem Cell transplant and Velcade and is currently supposed to be in remission. He fell over in the garden last year and is now awaiting his third operation to replace his hip. The first two involved trying to eradicate an infection in the bone – so we haven't exactly enjoyed remission.
He is also recovering from a chest infection and is now complaining of back pain and is convinced MM is back! So we are off to the consultant on Thursday.
We live in Deal and attend both Canterbury and Margate. My worry is that the "team approach" talked about by a consultant on this site does not seem to work very well.
We have of course been very pleased with treatment on the NHS and will fight any plans for radical change, but the bone man does not appear to talk to haemotology and so on.
I do most of the communicating on behalf of Mike who is a real fighter butfinds all the treatment pretty draining, I am now getting worried he may deteriorate without treatment. I notice Eve visits Canterbury and I wonder if she has any tips. Thank you. Jenny

[eveParticipant]

Hi Jenny
I would agree with most of your comment concerning team approach,from what I can gather they have a meeting on Fridays were individual cases may or may not be decided on and then you have to fight your corner.
If you go in to my profile,you can e-mail me personally as I feel when you are dealing with individual consultants its better to come of this site.I will give you all the help I can .Eve
Today was a fine example of non co-operation.9am for bloods,home and back again for Velcade at 3pm,still waiting for Velcade to come down at 4pm,although I have sent a letter of complaint in,about non co-operation between departments.
we actually dread the first day of each cycle as chemo tablets are always late.,any way e mail me and we can chat. Eve

[MinParticipant]

Hi Jenny,
I know where you are coming from, having been where you are in the past.
My husband was being treated by a so called kidney specialist who saw him every week took blood tests every week and and some point, when He told he her he had a dreadful pain in his back that co-incided with with a very elevated calcium reading in his blood test, she told him she was going to refer him to a haematologist; At the same time her colleague told my husband to stop drinking so much milk as it may be responsible for the high calcium reading.
When the calcium levels dropped she stopped the idea of him seeing the haematologist. The so called team meeting did not take place or at least one of the professionals would have suggested myeloma.
It was not until I told her, Peters mother had died of MM that she finaly jumped into action by which time it was too late.
I researched the !Kyphoplasty got his referral as his professional had not even heard of balloon kyphoplasty!!!!!!
WE my husband and i did all the communication between the two professionals with an occasional phone call or letter between them.
The team approach is something that they pay lip service too, but rarely happens.
You will have to have a very strong will to get things done and a determination to ensure it happens as we found the only time the team actually gelled was when He was finally diagnosed with MM and and they actually spoke to one another with regards to palliative care. But only because I insisted that I was not going to allow him to come home until they addressed his long term pain? within 24 hours he had had a massive blast of radio therapy and a pain management Dr and nurse followed by a social worker and a macmillan nurse and macmillan professional to get all the items he needed at home to allow him to get out of his chair that he slept in as he could not get upstairs.
Dont be afraid to get angry, if you don't get the correct responses as in my opinion they do respond, but they are often more concerned with the pennies than the patient.
Good Luck to you both and particularly to you as you will be doing the most worrying and the most responses.
Regards MIn

[eveParticipant]

Hi Jenny
I received your e-mail but have no contact to be able to contact you,I know were you live,I do not want to put on an open e mail address on line.so may I suggest if you have the time,we meet for a coffee in town,I do walk my dog a lot on the sea front if you would like to meet up this is a good way,but if you just want to keep it to e-mails I understand,but you will have to give me your e-mail address through messages for me to answer you.Eve

[eveParticipant]

Hi Min
How are things going with you,walking your dogs helps i do a lot of my thinking walking my dog,in Deal there is a great bunch of dog walkers there is always someone enjoying the sea air even if it is freezing cold.:-P

When Slim came out of hospital,I was the same as you,having to tell them what equipment I required,an OT told me I would not need a Zimmer and he could manage on sticks,I asked for her phone number so she could come and pick him up off the floor,as you might guess I got the zimmer.I found roughly the same as you,if you do not push,you will be left to manage any way you can,care packages just do not happen unless you stand your ground.

Looking back I am amazed at what we achieved,not only with Slim being so ill,and being so much better now,but because of his illness I new I had to make immediate improvement to the home,so bathroom became a shower room,new kitchen,new windows,and wooden flooring,and totally decorated,all this,and Slim being so ill.It showed me what I can achieve.I hope your year will be one of achieving .Love Eve

[eveParticipant]

Hi Jenny
Good luck for today,I will not tell you not to worry,because we all do.
Hope you received the e-mail.!!!!!
Eve

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