Dont worry they dont keep anyone in much longer than they have to, my husband was out on both occasions of his transplant the same afternoon of the transfusion. !st time he cut the grass on the same day!!!!
If you live localy they will expect you to return for bloods on alternate days. Ask Catherene Cox… Better being at home than catching hospital aquired infections
Min
Our Grandchildren called Peter 'Grandad Magic' always because he did silly things like morcombe and wise trick with the paper bag and pound coin.
My Grandson was given the paper bag by Peter and told to go home and practice it last time he was here. It is neatly folded and on his notce board along with other grandad magic treasures.
Daisy rang me yesterday to ask was I alright and happy without Grandad Magic how sweet she is 6.
Time for a shower and got to pain the walls n o time for moping Min
Emma was married in New York, A very short while after 9/11
We visited the site whilst there. the scale of the place is beyond imagination.
The pain was palpable for all New Yorkers
Min
You can do it Gill, if you can cope with a Builder with mm you can do the classes. More imprtantly give you each a break from one another and the mm. It takes over you life insidiously even though you dont 'have' it.
To get away and not mention it will be brill
good luck
Min
Hi Sarah,
I think occasionaly that if I had not given up work I would have a distraction and something to look forward to, but I would have missed those 5 months of being together all the time.
I dont know what to do or how to approach the coming months. but I intend to see a good deal more of my /our grandchildren than I was able to because of Peters illness. There snotty noses or Peter being unwell prevented that.
My life feels like it has been on hold for so long. I am desperatly lonely but just as I got used to him being away from home in the RAF I think I will adapt eventualy. I hope so as there is so much more I want out of life.
I will do the things he and I planned alone but knowing he would want me to.
What do I miss most….. The way he tidied up after me as I am living in a tip and struggling to keep on top of it, I miss the fact he always knew where to find the things I had lost.
His organisational skills were a bit of a nuisance but God I miss his precision his hooveritis his occasional requests for me to do as he was telling me.
My kitchen looks like a dream but open the doors and its obvious Peter has not been there to put it in some kind of order.
Once the floor is laid and the walls are painted I will get round to it but not yet. I keep thinking he will show me a sign he is watching me by doing for me but …………….
Minx
Roz my husband was half the man he had been when he died, but I surround myself with photo's of the well man he had been before MM got to him 2 and a half years ago.
Perhaps a visit to a spiritualist church would help you to understand he is no longer suffering, and watching over you.
Im not talking about charlatans who charge you money for messages that are false but to know he is at peace will help.
Im new to all this grief thing but I am comfortable that Peter is no longer suffering its the ones left behind that suffer.
My suffering is nothing compared to what he put up with over the past two years. Some time in the future I may feel differently but I know how unhappy he was, I know a little of the pain he suffered and I know he is no longer.
I am angry he left me but I understand it was not his choice.
God only takes the best. Greedy bas****
I love fuschias, I love my dogs, I love travel and holidays, and I particularly love technology.
I was left alone the other day and went and bought a set of new house phones as the LCD Display on mine stopped working and I could not see any of the people I wanted to contact. Whilst there I did something really stupid and signed a contract on a mobile phone.
It has takem me forever to learn how to put the numbers into the house phones and the mobile well…… I havent got flippin clue. I didnt take it out of the box for 4 days which is not me as I love this kind of thing now I wish i had left it in the box as it has me baffled.
I love my old stuff!
Min
ps your spelling is correct Gill
Dear Sarah,
My husband adored me and never shouted swore or got angry at me.
But as his illness progressed he changed. I think he was angry at life and the hand he had been dealt.
He occasionlay said why me? what have I done to deserve this and and the other illnesses he had overcome
Some times I am pleased he is no longer suffering others I am angry that he left me.
Like you he died in my arms and it was all so sureal. I am told he is here with me a novice in the new world and that he lies in my bed on his elbow looking at me as he did before he had a bad back.
I take comfort from that and talk to him all the time.
Ironicly I never had a cold when he was ill and now I have a doozy of some kind of virus.
The little white pills send me unconcious and I am grateful for that but cant rely on them forever.
I was told a few weeks ago that Peter probably had 6 months left so I had the opportunity to do what I could knowing I could not tell him. So wish I had
His motability car will be going back next week, and I went to look at a new car today, then he bought some tiles for the new kitchen floor HE HEE. if you know what I mean.
His times in and out of hospital got me used to being alone but I knew he was coming home then.
Sorry folks if this is too much information but no one on here or elsewhere told me how to prepare for this time. Thank god my learning curve is coming to an end
Love MIn
My husband wanted to work as a goal and to prove he had a normal life.
He had been off work for 18months and missed the social contact and banter so work but perhaps part time or less hours is the answer
Min
Dont take offence non was meant, Besides it is something that they will all encounter some a little more blase than others… There is no time to lose when like this.
Peter had had 3 other experiences with it.
Getting by on a rather nice whie tablet which is having as good effect as a glass of whisky which seems to be hidden as cant find it
Hi Gill and everyone.
I had viewed this video some weeks ago before Peter had his chemo, and for that reason I was aware of the problems re temperatures etc.
His circumstances were a little different as he went to hospital for 2 bags of blood on Saturday morning. I had always gone with him before but he had had a temperature all night and refused to act on it.
ON the day he told me in no uncertain term I was not allowed to go with him. I knew he would not tell them so
I rang the hospital to tell them and they agreed to keep him in before he even arrived.
He sheepishly rang me later to ask me to bring his PJs etc in.
ON arrival he was in a 4 man ward 1 of whome was a leukemia patient having chemo over 3 days and 1 who was obviously very ill and looked like he had been there for weeks. The next day another person arrived from within the hospital and he had a chest infection. As did the very ill man.
peter had dreadful diarrhoea because he was spending most of the time in the loo the other patients could not use the loo.
They moved him in to a single room where he was permanently attached to a drip and almost permanently on the loo.
Most of the time he was ok on Tuesday he developed a chest infection and cough and they used all the anti biotics they could to try to get on top of it. Innitialy he seemed to respond to them but
On Tuesday they sent him for a CT scan as they decided he had a problem with pneumonia. saying he had a small bit at the top of his left lung not quite right.
I arrived as he came back from that scan and did not have the results of it when I left at 5-30pm.
I went home took the dogs out and rang him at an agreed 9pm. no answer for over an hour but as he had the trots I kept thinking he was iether in the loo or sleeping as he was exhausted with dragging the drip to the loo.
I took a sleeping tablet and glass of wine and something told me to ring the ward sister……. I had never done that before as I was always happy with an evening visit.
The sister told me he had pneumonia and the itu staff were coming to look at him but I was not to worry.
I immediatly got in my car and drove to the hospital to find him with a rattle in his throat and gasping for air.
They used a mask that pushes oxeygen into the lungs as he was too exhausted to breath and eventualy got him into ITU.
At 3-30 am I went into see him and he was giving me instructions thru the mask to do various things and asking for his walking stick. The staff said they planned to intubate him and would have to sedate him to do this.
They suggested my son and I go home and get some rest.
I was not alarmed or worried as they seemed to be happy he would be ok.
Next day I returned at 10 and they said he was comfortable but his condition was 50-50 and the consultant had been and done a bone marrow test the result of which would take a few hours.
We were still confident he would recover until the result of the bone marrow biopsy showed he was beyond help With many many PLASMA CELLS
They were prepared to keep him on a ventilator until my daughter who was on a cruise in the med was informed and able to come home.
I decided that to prolong his suffering was not in anyones interest and it was agreed that the ventilator would be turned off and additional sedation would ensure that he was not in any distress or pain.
We went home in utter shock and I am still there still in utter shock. we were totaly unprepared and had no time for words that were left unsaid.
I would urge you all not to wait for words you want to say.
I and he thought we would have time to make plans and say things that had meaning and all those regretable things you wish you had had time to say.
I and he were robbed of that and I would hate anyone else to find themselves in that position. I was bereft that I did not know what he wanted in the event of being on a ventilator.
He had said he intended to live to be 70 and was not ready to make a will!
I knew with stage 3 mm that this was never going to happen but did not want to prevent the hope that kept him going.
I so so wish we had had a little more time to talk . But he never considered he would die.
His primary cause of death was indeed NS
Sarah
Im so sorry to hear your going through all this when you could well do without it.
I hope you cope with these problems, in doing so it may take you mind temporarily off the tragedy you have just had.
In other circumstances you would have no doubt dealt with the issues very profesionaly, but Your patients is being sorely tied at the moment
Love
MIn
Dear Dai,
I was upstairs preparing Peters uniform for his funeral and you came into my mind. I was a little upset that we had not heard from you and worried that you were still an inpatient.
You must have read my mind, as I came downstairs to turn of the 'Apple' which was playing Peters favourite Louis Armstrong . We have all the time in the world…………….tears streaming down my face.
Our children have gone to make some arrangements for afterwards and I found myself alone for the 1st time.
We./I were totally unprepared for Peters passing. In every way.
The circumstances were my son a captain in the Merchant Navy is always at sea, and my Daughter was oddly at sea too on a cruise.
Peter was rushed into the ITu and by a miracle Tony came home so I was able to have him by our side at the end. Whilst Emma was too far at see to get any signal.
How ironic is that.
Peter is coming home tomorrow, and the funeral will take place on Wednesday. There have been many tears and also much laughter, on the voyage of discovery which I had hoped would take place later.
I hope I have the strength to see me through the time when they all have to go there own ways, Tony to Dubai where he was due to start a new part of his career last week, and Emma home to her children.
But I will always look on here for comfort from my very dear cyber friends
Inconsolable
MIn
Today, I had a phone call from Peter to rush in with some clean PJs he has dreadfull diarrhoea and is permanently atteached to a drip of some kind. He has a temperature which fluctuates between 39.6 and 38.1.
Poor little pixie is on oxeygen and going to the loo is such a performance dragging that bleeding drip behind him after unplugging it and there is not always the time given the degree of diahhorea
Following a CT scan they think they have finaly found the problem he has a fungal infection in his upper left lung and possibly CDIFF too a dreadfull cough and he looks dreadfull and feels like shi**.
They cannot give him anything for his trots until they have had 2 clear cultures and iv paracetamol only works for about and hour.
I took him in some hard boiled eggs but he cant look at food without feeling sick. Living on custard at the moment might try and find some charcoal biscuits somewhere tommorow.
Visited Helen whilst there yesterday she is nearly due to go home and has been in for the past week or so. She had her stem cells same day as Peter.
He is not at all well and i feel very helpless to make things better.
Min
FIZZ FIZZ FIZZ
Are these people absolutely stupid. don't they realise the reason slim is attending hospital is because he is unwell
Time to throw in the hand grenade methinks.
couldnt organise a Pee up in a Brewery comes to mind.
I think you need to take the camper van and park on double yellows for 3 hours in protest eve
Cant you persuade them to do the zometa on a treatment day while he is waiting for the velcade to be made up in Phamacy? at least that will be one day to lie in bed if you can!
Love Min
