[MinParticipant]

I collected peter at 1-30pm yesterday, he had his stem cells infused at 9-30am that day ( I have to say the smell of sweet corn its gross) and he is pleased to be home and in his own bed.
Whilst in there both he and I discussed his returning on alternate days to the day unit for blood tests with healthcare professionals who all agree that the best place to be is at home……wherer he will be exposed to fewer germs. Our Daughter spoke to the 'top man' about it too. I am of the opinion that whilst he is very tired but ok now, by Sunday his numbers should start to plummet and with it will come the total lethargy that is to be expected.
Dragging him there for treatment blood or whatever (even exposure to germs) is beginning to bug me big style.
So we have decided to call on the Macmillan nurse who we haven't seen for quite some time and see what she can do to help.
Daughter has spoken to her and she assures her its not impossible to have the tests done at home and keep the visits down to a minimum to ensure a good outcome.
I am constantly aware of becoming this institutionalised carer who watches them do what they plan or change the rules at a moments notice without a word of complaint and now I am about to turn.
Peter sister is a staff nurse and having had a long conversation with her about care and the NHS I am thinking of coming out fighting.
I have always been of the opinion that everyone gets the same care. But I have witnessed the fact that those who shout loudest get better.
Does anyone else have an opinion ?
Min

[DaiCroParticipant]

Start shouting… make demands… get guarantees that Peter will receive the same level of treatment and care at home as he would in a 'best condition' ward. I recall my SCT and I would have hated to have been at home without the proper support of healthcare professionals… be they MacMillan or the District Nurse team – co-ordinated by a lead nurse from the hospital.

I can appreciate how much the 'back and forth' must bug you Min and I hate the thought of a bad episode occurring at home… especially as Sods Law dictates that this 'will' happen at 3:40am on a wet Friday morning.

If it is a matter of convenience, make sure that it is convenient for you… I'd make sure that my GP knows the whole score as well.

All the best… and don't let Peter agree with everything they ask for… its you that will be doing the donkey work.

Dai.

[gina45Participant]

Min you shout loud, we have learnt to do it and it works. when mum is at home and needs bloods the nurse from our surgery comes to the house to do it now. So it can be done.
I really hope things get sorted for you and peter and they start to listen.
You take care and keep us updated.
Gina xxxx

[zasrsParticipant]

Hi Min
There is no way Peter should be going back and forward to hospiyal the district nurses should be able to do daily bloods, as Dai says things always go wrong on a friday afternoon, I know this as a DN and a carer, so shout loud. I hate to say this but macmillian nurses seem to work 9-5pm monday to friday, hopefully you have accsess to the hospital ward.

My very best wishes to you both

Sarahg

[MinParticipant]

Hello Sarah,
Its so nice to hear from you, I know its the DS who will do the work but I just felt I needed the Macmillan to stick the boot in and make it happen.
They seem to have so much clout and can shout and be heard where we would go round the houses and get nowhere.
She was excellent at getting what we wanted 2 years ago when Peter could not climb the stairs to go to bed or get in and out of bed, requests to our GP had to go to several offices and took weeks to do nothing while he could only sleep in a chair in the lounge. One word from her and they were here the next day. Therefore we hope she can shake someones cage.
In addition I have to admit to needing the help and support she offered in the past.
Thank you for dropping by and don't turn into a stranger we are here for you when /if you need us
love
Min

[brochoParticipant]

Hi Min how crazy to expect Pter to make an arduous journey like that let alone the risk of others bugs etc Having only recently seen how much authority the Macmillan nurses have I agree they probably have more chance of finding a solution thats best for Peter It does seem unfair that those who shout loudest get the best care but thank goodness Peter has got you to fight his corner Go girl!! Having said that it must put extra pressure on you at a time when you must be exhausted. I hope you get a chance to take a break sometimes Min love to you both Bridget x

[GillParticipant]

I am sure that you can shout very politely so think that maybe the time is right to shout. I am sure as Bridget says you are exhausted but know that a fight can give one an extra spurt when needed.

Best of luck Gillxx

[RozParticipant]

You tell em girl,
Shout all you can. That way you will be heard hopefully.
Been there and done it so I know how you feel. You get all the help you need at home.
Hope Peter starts feeling more human soon.

Love to you both
Roz

[MinParticipant]

As it happens events overtook us, Peter started with a temp at 2 am and at 4 he would not let me ring the hospital. at 6am it was 39.3 and we had a blazing row, followed by me walking the dog.During which I rang the ward came back gave him paracetamol.
We attended early for his appointment and he was told he was staying in had a hissy fit but was finaly persuaded to stay and that is where he is now while I organise a kitchen to be delivered that should have been comming on monday.
Peter is very depressed at the moment and its difficult as he has never been depressed before and had resolved that he wanted to be in control of what was happening as his perception is people are sticking needles in me giving me this that and the other and no one asks what I want.
I say I but mean him.
He knows what is needed he just wants to be more involved in the choices and he is so tired he cant think straight.
My Im falling off the edge slowly.

[DaiCroParticipant]

I know the feeling Min and I fully understand Peter's position…. but he has to seize control… he has to demand a sit down with his consultant and lead nurse and list his concerns. Its no use him fighting you over his treatment… you know when to act as an intermediary concerning practical health matters and you have a clearer idea than him concerning options for processes and procedures… it seems to me that Peter gives into them a little too easily at times which compromises your concerns and your clarity of vision.

Perhaps you could find some time to ask Peter what he wants… alongside what you see he needs… don't get me wrong, I am sure you do it all the time but he isn't listening… not really… he needs to see that you really mean it… and that there will be little real progress in term of his needs until he faces them and asks for them in a direct and, if needs be, forceful manner.

Now look above and transcribe Min and Peter for Dai and Janet and a couple of weeks ago… that's where I/we are coming from… and while it took a while we feel that we are taking control, getting what we ask for (we were probing but we were not really asking).

Bad luck and bad timing will always be issues and Peter and I will end up in the wrong bed when we least want it… but everything else can be either under our control or under our power to know what and when to ask for… and hopefully Peter and I will have the gumption and good sense to be guided by the one person who knows what we really need… but allows us to think it was our own idea. :-0

Dai.

[mhnevillParticipant]

Hi Min

I dfo sympathise with you and peter and I'm sorry that he has ended up back in hospital – just what he didn't want.

When I had a double hip operation some years ago (not MM related) I felt in the same position as Peter – being kept in hospital against my will. My husband and I were at logger heads about it. The thing that helped in the end was me getting a wise third person involved who mediated and made us both see sense and compromise. To this day Gordon doesn't know it was me asked her to intervene.

Is there anyone can help the two of you. Have you talked to the Macmillan nurse? They are there for families too.

Much love to you and Peter.

Mavis

[zasrsParticipant]

Hi Min

Gordon and I would often end up at loggerheads, this mean mean disease. I too would walk out, i think it helped, try talking to the macs, it sounds as though you have a good rapport with them, someone needs to listen to you both, poor Peter, just wants his normal life back.

with love sarah xx

[MinParticipant]

the day certainly ended better than it began at 2am.
He is esconsed in his single room with en suite so Score 1 point
He is responding to the iv anti biotics Score 2 points
He had a long talk and cry with the lead nurse Score 3 points
She is arranging for a professional to talk to him about his concerns more points
He rang a while ago to say he felt better but the Diarrhoea is wining score 1.5 points
He also gave me instructions on what to tell the contractors when they arrive…. Thats much more like the Peter I know and love.
From my point of view I am so pleased he is where he is; and getting the attention and care he requires and that makes the outcome so much brighter. I am pleased I didnt have to shout after all but I am going to get the resolve to be able to when necessary.
They are not going to rely an my poor quality care by comparison to a host of healthcare professionals and all that goes with being an inpatient.
Thanks mates for keeping me company during this rough ride.
Love MIn

[brochoParticipant]

Hi Min as awful as it is for Peter to be away from home , and you I am sure you are right about him needing to be there I do understand how he feels about not being in control and its always worse when you are feeling c**p Hopefully this depression will allow him to be more honest with the professionals and let him build a better relationship with them . I bet he hasnt even realised how much extra pressure his silence puts on you as well Silly sod !! Hopefully they will get this infection under control quickly so that he can begin to build his stregth up again Min try and get some rest while Peter is in hospital , I know its difficult when you visiting every day but you must be exhausted by it all lots of love to you both Dont forget the good times are just around the next corner love Bridget x

[RozParticipant]

Bet as soon as it happened, you had a sigh of relief that at last they are going to look after him and not expect me to do it!! Didn't you?? But then part of you was sad because he was back in a place he didn't want to go and you felt guilty for sending him? I know these feelings because I dealt with them all from Michael.
I just want to say this Min and please don't take it the wrong way. Now he is in the room on his own, please make sure he gets the same care and attention that he deserves. I'm only saying this because I found that the longer they were treating Michael the care was not the same. At the very begining they were all over him like a rash, but as time went by things dwindlled away. I just don't want it to happen to you.
SO FIGHT THE FIGHT TOO. Depression is part of this horrible disease..
All the best to you both.
Wish and hope Peter improves.
Roz

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