[RozParticipant]

Hi All
I decided to start a new thread hope you don't mind?
Michael's nurse phoned last night to see how things were. I told her about Saturday which was terrible. Because these confusing days are happening more often, more tests have got to be done on Michael to see where it originates from.
Also She is going to get an appointment booked as soon as pos with consultant so we can discuss where we go from now.
Because neither of us wants him in hospital for the rest of his days, nothing seems simple.
AND SNOW MAY STOP ME GOING. So I've decided someone doesn't like me some where.
Hope you get the gist of this cos I'm abit upset today, knowing that Michael hasn't got long to go.

Love to you all
Roz

[brochoParticipant]

Good Morning Roz I am so glad the nurse is keeping you informed and I hope she gets that meeting arranged quickly Have they checked Michaels calcium levels ? If it is too high it leads to confusion , which could be sorted easily I am crossing fingers and toes the weather doesnt stop you going to see Michael , its a nuisance for us all !!love Bridget x

[RozParticipant]

Hi Bridget

Yes all those things have been checked, it's either another infection, the one in his arm getting worse, his medication, or even his brain.

Once the meeting has been arranged it's hospitalisation full time so I believe, or home for not very long. They believe his arm is worse than the other specialist does plus its not mended enough for any more ops.

Thanks
Roz

[GillParticipant]

Hi Roz

I hope they arrange a meeting very soon, and that the best thing for Michael can be sorted out.

It must be frustrating for you but if Michael's calcium levels are back on track let's hope he becomes less confused.

I have my fingers crossed that the weather does not stop you getting to the hospital and want to let you know that we are all rooting for Michael.

Love from Gill xxx

[shirleyParticipant]

Dear Roz,as Bridget say's its good that the nurses are keeping in touch with Micheals progress,. You say your having abit of a low/tearful day,but hey thats allowed,you go ahead and have a good weep,you feel much better for doing so,i myself always feel better when i've had a bit of a weep. Hope they get to sort Micheal out very soon,you stay strong as always luv Shirls x x x

[RozParticipant]

Thanks All

Meeting is arranged for Thursday, Consultants rounds again. So may be some answers of his life will be discussed.

Not going till then due to weather and Michael falling asleep alot.

Tell you what I can
Roz

[LynnieParticipant]

Hello Roz

I'll be thinking about you on Thursday and hoping you get some answers. Wishing for some better news for you.

Lynne x

[GeorginaParticipant]

Hi Roz

I have followed yours and Michael's journey for some time and just wanted to wish you luck for Thursday and say I'll be thinking of you.

Take care of yourself
Georgina

[RozParticipant]

Thanks Lynn and Georgina

How things stand I'm not thinking positive, both Michael and I know its either long term hospitalisation or home with the highest antibiotics for life.

Not much of a life left, and when his kidneys dry out there will be no fluids at home, and no bloods.

So how do I go with an open mind???????

Roz

[brochoParticipant]

Dear Roz I can only imagine how bleak the future must seem to you right now but please dont give up hope When Michael comes home he will have his own care plan and package which will include plans for blood transfusions and fluid intake Both you and Michael have the right to insist you are included in all the planning so you will be able to voice your fears. If things arent working you will be able to call on your specialist nurse and others for help to get it right As for being on anti- biotics long term lots of people are ,and live fulfilling and enjoyable lives You will both adjust to it , (I never imagined I would be reliant on drugs as I am now but I make the best of it and so will Michael) I hope today is a better day for you love Bridget x

[DaiCroParticipant]

Roz,

Last week the medics said that Michael's myeloma was improving but the infection in his arm was still holding him back. I haven't read anything since then that says that has changed dramatically.

I appreciate your fears, I really, really do but for Michael's well being and your sanity it seems to me that you have got to get some definitive answers from the consultant at your next meeting. You are caught up in so many emotions at the moment that it might be a good idea to take a family member or friend with you – someone to make sure you ask all the questions you need clarified, take notes and/or listen from a different perspective.

If the consultant says that palliative care is the only option for Michael from now on then you can look at your options for home care, hospice or hospital etc. If he says that there is still hope for further chemotherapy regimes (Velcade etc.), once they control/eradicate the infections problems then you can seek assistance from the doctors and specialist nurses to provide a clear and concise plan of actions and treatments.

This continuing decreasing circles of different opinions and conjectures blankets both you and Michael in half truths, confusion and ultra negativity.

Either you are reading between the lines and preparing yourself for the worst or I am reading between the lines and seeing hope and positivity diluted by appalling bedside manners and misinformation by those you rely on.

Michael needs as much positivity as he can take right now – on which ever path he has to follow so please, please take a family member or friend and/or a specialist nurse with you to the consultancy. It is your right to do so and if ever there was a time to insist on those rights it is right now.

Dai.

[RozParticipant]

Hi

Last week we got told Michael's Myeloma was improving but his arm is the main source for all his infections. Plus the side effects of all his drugs.
The antibiotic given via his hickman line straight through is different to the ones tablet form.
Michael suffers with all sorts of problems from the anti-biotics which I haven't mentioned and we have been told coming home on the tablet form, highest they can find will also course him probs and he will not have much of a life.

We also got told if Michael came home, he'd be straight back in ten times worse and he may not survive. That is why a plan has to be sorted so Michael has a life and survives. Otherwise we all no what will happen.

That is why only Michael's consultant can advice us along the way.

Michael has had Velcade and the side effects were so great they made him really really poorly. He is now on Revlimid for life now, because Michael's body just fights all medication. Its working for the myeloma but not helping any of his viruses.
We got told the other day his arm has never been so bad!

So maybe I am looking negativly, but everything Michael has tried never works longer than 3-6 months. In 2 years he has had all types of chemo, high chemo, SCT, Velcade and now revlimid.

Don't think I'll get to Thursdays meeting due to the snow, so another day will have to be planned.

Cheers
Roz

[suemasonParticipant]

Hi Roz and Michael

I too have been following your story for a long time and I just want to wish you luck and send all my love to you both, my heart really goes out to you. It would be a good idea to take someone with you to the meeting with the consultant, keep as strong as you possibly can, take care.

Love to you both

Sue Mason xxx

[RozParticipant]

Thanks Sue

Michael's nurse will be there with us too.

Roz

[tomParticipant]

Hi Roz

Just thought i would pop in and see how you are both doing?

and gonna send you one of "Tom's Cyber Hugs" for you Both "WWwwwwooooooSSSsssHhh" now thats a good one sent xx

Love to you Both and keep strong xxx

[Author]

Posts