This topic contains 13 replies, has 9 voices, and was last updated by 
lorrainey 13 years, 2 months ago.
After the sad loss of Peter (Min's husband) to the above side effect I googled Neutropeanic Sepsis and looked at the following link.
For me it was much easier to understand as it was in video form. I know it is not a vey uplifting subject but maybe one that we should all be aware of
Hi Gill,
I think you are right to highlight neutropenic sepsis as I believe I am correct in thinking that it is a condition most myeloma sufferers will find themselves in at some point due to a low neutrophil count.
Patrick managed to overcome at least three episodes due to quick action in recognising symptoms and getting him in to hospital and having immediate treatment. The part which can be both time consuming and difficult is identifying the bug causing infection – it is not until then that the most effective antibiotics can be given.
Any sign of a raised temp, rigours etc do not delay – get to hospital asap.
After overcoming these episodes on many occasions Patrick unexpectedly slipped into a coma after I took him to hospital with a pain in his chest, and died a day later.
Best Wishes
Tina X
hi Gill
Thank you for bringing the video to are attention,it is exactly what is needed,It is making that call is the hard one,sometimes as in Slims case there was no temperture,and his insistence that I was fussing,even having a doctor out,who looking back had know idea,!!!!
Staff told me later what we went through should not have happened.
I can only say it will not happen again,
I was told in no circumstances was I to go to my doctor,bring him in blood test within 1/2 hour treated within the hour,and told to stand my ground if they did not treat him!!!!
It is very hard when your think the professionals know best!!!!!!
Eve
Well done Gill that was very very informative. I had NS with a negative (something) Staf (not sure what the other word was now), about a week or so after my SCT. It was when they took my central line out and it released a load of bugs into my body. A worrying 24 hrs but lucky I was already in the Oncology ward at the time.
Kindest regards ? Vasbyte
David
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
Dear Min
I thought long and hard before posting the link. I would have hated to have caused you more pain on top of what you are going through.
It was Stephen (after I showed him the video clip)that said I should post it and he believed that you, Min (even if you had had no idea about NS beforehand) would be glad to make sure that others are aware.
Do keep in touch.
You are soooo right regarding saying those words. Not one of us knows when we may have to say goodbye. After all the bus that can knock any of us down is just around the corner
It is finding balance I think. The balance to be aware that the person you are closest to in the whole world has a limited life span and all those words that you were going to say one day should be said now, but still be able to berate each other over the usual mundane stuff. Will Stephen EVER rinse the soap off his hands properly before drying them on our white towels:-/
I do hope you are feeling able to at least get by at the moment
Much love Gill xxx
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
Dear Min
You are so brave and generous in sharing the aweful last journey with Peter. It will no doubt help others fo us to ahve this extra knowledge.
Hope the white tablets continue to work as you build up your strength.
Very best wishes.
Mavis
Dear Min
Thank you so much for sharing your loss with us – I look at my darling husband who cares for me and now understand better why he is at times fussy and overprotective (in my grumpy independent eyes anyway).
Having lost my first husband of 21 years to cancer I have been where you are. Two things – keep breathing and keep taking that white tablet – or whatever else it takes to get you through.
You have been so brave and strong – please look after yourself now at least for a little while.
You are in my prayers.
love Carol xx
Hi Min
I know you will get through this,Luck or some one looking over you having your son by your side!!:-)
Sarah was lucky to be able to bring her husband home to die,Peter was lucky in the fact that he new nothing about his death,you had to carry that burden,
We all know how stubborn men can be,and often that,s why we love them so much,It made him the man he was,one to be very proud of,
I like the bit about hiding the whiskey ,my daughters would have poured it down the drain:-P LOL and rightly so,whiskey makes you frisky so the saying goes,but it doesn,t Min it makes you a different person,my advice stick to wine.
Do not have regrets Min,no one can predict the future,Peter has done a lot with his life.and you have been his support,he could not have had the life,he lived without you.and because of his life it made you more independent,that is what makes you special ,Why do you think it took me 30 years to marry Slim,I did not make a good service mans wife,takes a special person:-)
Love Eve
Hi Min
Thank you for your very brave post. Gordon would not speak to me in the last few days in fact looking back we hardley spoke in the last few weeks, I because i was terrified of saying the wrong think and him getting cross with me, both of which happened alot over the last 10 years, one of the last lovley things he said was to say sorry, for what i do not know, i was in too much of a state to ask.
Dear Min it is so difficult, I think now of everything i should have said, but at least i could hold him and tell him i loved him as he died, not every one is that lucky. How brave of you to make such a decision for peter when such shock, we are so lucky to have our famalies around us at times like this.
Those little white pills are wonderful just got another months supply, they go so well with wine, rather to much in my case!!!
with love sarah xx
Dear Min, Thank you for a powerful and brave post.
Right from the diagnosis of my mm I asked for the REAL prognosis, two to three years. The Surgeon who repaired my neck came and had a chat with me before we parted company. During the conversation he said, ?If I have to die of a cancer I would choose MM, it at least gives you time to say the things that need to be said and do the things that need to be done?. That really hit home with me.
Ever since that day I have been planning my departure, I am that sort of guy, and every day I have told my wife of 48 years just how much I love her and how much she has meant to me. Even the funeral and new grave set (I have a grave next to my late son and they are going to make it into one grave) are planned. Mo and my children are aware of my wishes and I have written my will. I made up a bucket list of friends who have really meant something to me and I have spoken personally to each one about our friendship ? it has been hard and there have been a few tears on the way.
And,therfore, when I come to meet my maker ?I will have said the things that needed to be said and I will have done the things that needed to be done?, and, I will be ready.
That is not to say I accept the prognosis and I am going to lay down and die at some pre-ordained time, I will fight this bl**dy cancer with all my strength with my dear Wife and wonderful Family supporting me, but, I am a realist.
Thanks once again Min
May your God walk with you, Love ? Vasbyte
David
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
Dear Min,
Thankyou from me too for your very brave post. ((((BIG HUGS)))) and love to you.
Take care
Lorraine xxx
The topic ‘Neatropaenic Sepsis’ is closed to new replies.
