[susannahParticipant]

Hi I havent been on the site to post for some time but I feel I need to share my experience with you For those who dont know Michael my husband is the one with MM . Since stopping bendamustine he has been on chemo and dex not without complications but it kept him going. He was asked to go on a brand new drug study MUK three in September, 3 people were chosen from different parts of the country all starting a week apart. Hes been ok blood normal but he developed horrendous back pain (the same as when he first presented) his consultant said this was not a good sign. We went to see her on Wednesday after a 2 hour wait went in to see her (Michael in a wheel chair) she started by saying his PPs had shot up and ther was Bence Jones protein in his urine, and then something about his kidney function. Then the bomb shell she said i give you 3 to six months i will arrange for you to go back to you local hospital were they will arrange pallative care, after that i dint here anything else. We havent slept since why did she tell us how long why not just say the treatment had not worked we could have got our heads round that but not this were both in bits, I just didnt know who else to tell Im sorry if this upsets anyone

Distraught

Sue

[DaiCroParticipant]

Hi Sue,

I am so sorry that Michael has reached the end of effective treatments. It is pointless saying that he had a good run because regardless of the timescale he has now reached the end of his fight against MM.

It seems that by recommending your local hospital for palliative care your consultant has confirmed that Haematology can offer no more… Several good friends have been through this forum and chose between home care, with a Macmillan nurse in support or a local Hospice. Both will ensure that Michael will be made as comfortable as possible and most importantly, pain free.

I am on Rev And Dex at the moment, so I am on the road home too… Although I am hoping for a year or two yet. Janet and I have spoken about our options and for the moment home is our choice (as much as the freedom allowed to family and friends to come and go as we please). I hope that in comfortable and pain free surroundings you will be afforded sufficient time and space to make peace and say your goodbyes as you wish… Although I know that however long you get it will never be enough.

With loving regards

Dai.

[PerkymiteParticipant]

Dear Sue

I am sorry to hear that Michael is coming to the end of his road. I am even sorrier that it was broken to you in an apparently brutal manner. Please do not feel you have to apologize for your posts you have absolutely no reason too. We are here for you.

Enjoy each other while you still have the chance.

My kindest regards ? and may your God walk with you.

David

[eveParticipant]

Hi Sue
You are right it could have been approached in a different way,people say when you have news that shocks you,you only hear what your mind will accept.So may be no matter which way it was put,it would have had the same effect,

I do not think any one can give a person a time limit,yes they can say,the treatment is no longer working,and no further treatment is possible.what this gives you is very valuable time to adjust,and say to each other all the things that have been left unsaid,

I would recommend you see your own doctor as now the district nurses have a lot of involvement.
Time is only how you see it,a number is just that,make the most of your lives,let people help you both.My best wishers to your family.Eve

[gina45Participant]

Dear Sue, i am so sorry that you were told the way you were. my mum passed last november and we were told there was nothing more they could do and we asked how long, they couldnt say but did say imminent. mum went home and had palliative care there and she was glad that she got her wish. She passed very peacefully.
I am so sorry you are facing this hard time. I hope that you do get your head round it and talk about Michaels wishes.
I am thinking of you and your family, please take care.
Dont apologise for posting, the people on here are so lovely and supportive
Gina xx

[susannahParticipant]

Dear All

Thank you so much for your kind replys, and thank you Dai you have a special way with words.
Its 4am and I sit thinking of all the things I want to say to Michael, but then i just start to cry,how do you say goodbye to your sole mate, the person you have lived with for 34years.
I want to nurse Michael as long as I can, I cant bear the thought of him being alone in hospital, but I know that this might not be avoidable at some point.
I suppose when we have seen the Pallative care team next Thursday I may feel a little more supported, but at the moment I just feel alone and frightened. Its not that I dont want anyone to help its just that Ive always coped and letting someone else into our lives makes me feel as though im letting Michael down when he needs me so much.
Its very early in the morning and im probably just rambling, but it helps.

Love to all

Sue

[tomParticipant]

Hi Sue and Michael

I am so sorry to read that its not working for you two and of course your family and friends.

You all have put up a great fight with this Myeloma,am sure Michael will be made comfortable and be pain free, Yes you both could have been told better that the treatment had stopped working but please dont dwell on it as you will need your strenth to comfort each other.

Please dont feel you are or have let Michael down by getting help in to make you time easier with the help you can get.

How do you say goodbye?? well if it happens to me with Elaine I wont do too much thinking I would speak from the heart and how I feel felt at the time, and as its me with the MM I Told Elaine the same no regrets just make the best of the time we have together.

Lots of Love and Hugs to you two, and please Sue and Michael dont feel you have upset anyone as we are all here for you as am sure you are for all of us.

Love and Hugs Tom XXXXX

[keznmelParticipant]

Oh Sue… :-(. I know that I haven't spoken to you before, I'm quite new. It's also my partner who has MM.

I often wonder *how* you do cope and accept that news??!! If I can be honest, I don't have any advise to give – other than love each other and make this time more special than you have any other.

I am so very sorry Sue…

Thinking of you both

Love Kerry x x x

[mhnevillParticipant]

Dear Sue and Michael

Just wanted to let you know that you will both be in my thoughts and prayers at this very difficult time. I am sure you will feel better after you have seen the Pallative Care Team. They will really want to take your thoughts and wishes into account aand make things as easy as possible.

No one can predict how long a particular life will be. Sorry your Consultant was so unfeeling.

Let your love for each other show in the quietness if you can't always do words! And tears are allowed.

Much love to you both.

Mavis x

[MinParticipant]

Dear Susannah,
I can see she was particularly insensitive, but its done and she has given you the opportunity to prepare. Not many people get that opportunity, often dying suddenly whilst still hoping as I did with Peter so grasp the moments you share, to discuss all the .things you have been afraid to confront. Talk until you are horse and enjoy each day. Her timings may be totally innacurate, either way.
But you now know, its not what you wanted to hear, I was told 6 months and it was 6 weeks! But knowing is better than not knowing. Turn this negative into a posative if at all possible. Talk talk talk. Where possible make a voice recording of you conversation. I long to hear Peters voice…….. wish I had some way of finding a recording longer than 20 seconds …….
Your in my thoughts
Min

[susannahParticipant]

Dear All Thank you so much for your kind words they help me such a lot

Sue XXXX

[zasrsParticipant]

Dear Sue and Michael

What a brutal way to give you both news which we all know will come one day but hope against hope that we never will hear.

I was told to take Gordon home, I thought we would have some time together at home to talk and say things we had not yet said. It was not to be Gordon shut us all out and died within 36 hours of coming home.

If you can talk to each other all the time, hopefully he can stay at home there is hopefully a good district nurse team where you live they are better than anyone else as they work 24/7 other teams seem to work 9-5 monday to Friday.

With beast wishes sarah

[susannahParticipant]

Hi All Just an update on Michael we had to take him into hospital saturday
evening, no temp, but we thought he was having some kind of stroke, as I didnt have any contact numbers I rang the haematology ward at our local hospital and after a chat with his consultant we took him in. He is still in but i cannot fault the care he has had. They took blood cultures and they have grown something or other which could have been fatal if not treated so quickly and he has had 4 units of blood., We have met the nurse who deals with palliative care, she has arranged for the district nurses and macmillan team to visit when Michael comes home. As you said Sarah its the district nurses that will do most of his care.

I cant say im coping just getting through one day at a time, even with all the nice people trying to help I feel so alone, i find alot of comfort just reading your posts over and over

love
Sue xx

[eveParticipant]

Hi Sue
As with Myeloma every person is different when in your situation,and also react differently,You have to do what is best for you.

I have a friend who use to be in the same position,she used to be worried how she would cope with the practical side of nursing,her husband chose to stay at home,he did go to respite,to give her a break,but when the end came,he was at home.By accepting and planning it was an easier process,it was over a very long period for my friend,and both of them amazed me.It gave them both a long time to accept talk and plan.

I honestly believe because of this,6 months after his death,she is able to function far better.
We have been friends for over thirty years and because I was coping with Slim at the same time,we spent time walking the dogs,I still feel guilty that at the end because of Slim going through SCT plus loosing my grandson,I could not be there to help her.So make use of the people who love and care for you.Love Eve

[tomParticipant]

Hi Sue and Michael

Sorry to hear its a Hospital stay for Michael but am pleased that when he is home a plan will be put in place for Michael and yourself.

Please mdont worry about what you can and cant do that will all wait and do what you are doing now "One Day At A Time" stay well Sue

Love and Huhs to you all

Tom xxx

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