First chance to reply
Ward went in lock down today no new admissions place swarming with cleaners. Slims septic pneumonia is back, had 24 hour bug,on the whole much better,Test to see if there is an under lying infection.Doctor does not think it is directly related to mm,except concerning the body being at low ebb,to pick up infections.all the more reason not to be on general ward!!!!!!!!!
Slim was given drugs that were not his.Told they would not clash with the drugs he is taking.!!!!!
Look under the Dr Foster awards and see who has the best nursing in this country!!!!!!!
If this is true,?
HI Bridget,
You are all ways there to support people,in time of need,I wish you well and will try to follow your post to support you as much as I can.best wishers eve
just got in
THere is now a bug on ward number of patients infected Slim being one,was talking about shut down,doing all personal care ,picked up on antibiotics and fluids,plus potassium low.
exray not looking good patchy lungs,I cannot tell you how many people I have spoken too.Even Slim in one of his lucid moments,had a slanging match with a nurse,he could not take tablets,because he felt like vomiting,she said he asked for pain killers,not true they are slow releasing part of pain control for mm.
abandon hope all you who enter Canterbury Hospital,in Kent.
I have made it my place to do personal care even in itu,the only other contact is staff.
I informed the myeloma team on Wednesday They have taken over his care,but will not move him to unit for cancer patients,does not fit criteria ask to see it in writing still waiting,.
going to bed,dog is farmed out,back to hospital for eight o clock
Hi Min
The news is not great I am going to try to keep this reply short
After being discharged from A&e,then readmitted 2 days later on easter monday Slim spent 9 days in itu with septic pneumonia in both lungs,care excellent,
sent to general ward,as cancer ward would not accept him,hdu was not given as alternative.
First complaint wrong ward,tried to get him moved
that night after i went home,Slim never saw a nurse all night,5 times up to toilet 50 mts.this man could hardly walk20 mts.I told staff before Ileft he needed help unable to lift body weight from toilet.Dirty toilets no emergency bells in toilet.photos taken,
Second compaint,He needed to be off this ward,infection highly likley,standered poor,doctor who should have been looking after Slim,never showed ,asked to see Matron,MMtrials team,no response until I went to trust building to family complaints.
Three days later and lots of talking no results.
Slim has now got the septic pneumonia back.
So exhausted have been in hospital over 12 hours a day,trying to minimize people having contact,doing all personal care,you would think after nine days in itu,his after care would have been hdu at least
My own grandchildren do not see him,but other peoples kids are less than 5 mts away
None of the above issues have been resolved at all,3 days is a plenty of time to solve basic hygene,plastic bowels shared between patients,emergency bells not fixed,tables not cleaned,dirty bed pans left in sluice room with door open outside trolleys waiting to feed and water patients,my business would have been closed down ,inthese conditions.
I can not take him out myself as he is so ill,now septic pneumonia is back,he is physically going down hill and so depressed.
I watched a doctor and nurse pull him up the bed by his shoulders,although I told them about his mm tried to tell them to use sheet to lift,all to no avail .
Making notes taking pictures,complaining,but it is not making Slim better.
In one hand there telling me he has been seriously ill and not fit to leave,and when I point out the chances because of conditions,and staff who cannot cope with someone that needs high dependence and basic contamination between beds,also the fast amount of staff he is coming in contact with,who have no idea about mm conditions,to put it bluntly it is very poor and no one is taking any notice just doing there little bit of expertise and not treating the patient as a human being.
off to hospital now for another marathon
Thank you every one for all your Help
Had a tough week and a big learning curve,we got married on 26th of April instead of 28.th The hospital did us proud,cannot thank them enough,good job we did it then as Slim was a bit off his head the next day,and I am sure the Registrar would have said he was not of a sound mind.
Only managed one daughter there but it was about us,and Slim seemed less agitated knowing he had made an honest woman of me:-P
He is out of the woods now but still in itu.Think it is going to take sometime to recover,All chemo stopped will see how this goes in future.
Hope you all had a nice easter,and Perkymite keep going on ward,live for the day,my love to you all eve
sheff
This is to you personally ,I need to Know more,I do not know if we can post are email address on here, but I do need some facts on this.
My husband was diagnosed in January on myeloma x1 trials ctd side.
He is in hospital at this moment in itu.getting better slowly from infection but what concerns me,is the mental state,I do not know if it is drugs,or myeloma,has been getting very confused for a long time.He does have lesions on his skull.
Sheff Myeloma is a terminal cancer,no cure only buys time,I have had to ask a lot of question before I got answeres;eg mri report,any lesions, bloods, bence jones myeloma,all soughts of questions.
My husband on admission to itu was told,they cannot promise he would not die,we were married in itu on 26April at 7 0clock at night.He is only just out of danger,do not know yet about damage to his lungs.
These people on here need hope its a journey we are on,thing go wrong and it makes us angry,If Slim had died I would have thought he is not suffering,I cannot even begin to tell you how elated i am,that he is alive.
I would like to hear from you about information concerning myeloma of the brain fluid
Hi
thought you all might like to know,low blood pressure,indication of infection,it was not picked up on at a&e on Saturday,as dexi managed to hide the infection.Sent home what happened to this extra care for taking part in trials !!!!IF I had not phoned for ambulance Slim I dread to think what position we would be in,I would never have forgiven myself if i had not phoned that ambulance,I believed on Saturday,that I was making a fuss,although I had doctor out,plus I new he was fading before my eyes.
Slim in hospital itu.holding his own.admitted on Monday.He will come through this,and now I am a wiser women,next time I will act on my believes,and no so called expert will tell me he is fine ignore the bp and get his fluids up,thats what i was told in a&e.
From now on,I will act on my instincts :-S
On my way to bed.toget some rest eve
Thanks Min
Will try 7up,,does not like flavoured water,a little bit better today although still not eating drinking small amounts.
Hospital tomorrow for bloods,the unit will open tomorrow,so I am going to ring first thing,see if doctor will see him,needs fluids inside him.
not so confused today,energy levels zero.
The problem with him,is he has never been ill before,and does not know much in terms of how illness feels,I know when he says he is in pain,he must have had it a few days,and its got to the stage he cannot hide it any more.
24 years in the marines[alittle bit of pain never hurt anybody] and [no pain no gain] brain washed with it.
Thanks for support and help. eve
How many ciders?,you enjoy them and have one for me
thanks Jo
Have managed to get rehydration powders and some energy drinks which I am mixing with drinks,that he likes.Also find straw is helping ,every 10 min I make him have a few sips,seems to be working,plus the threat of hospital,
First time Slim has not got out of bed,
Thanks again jo,it brings it home how this mm reacts so different on people
Thanks for reply
Hard to get fluid in Slim,has been so good about it for last 6weeks,has a sore throat,as drugs attack soft tissue,I know this is going to be a hard time,but the low bp is it normal ,
My daughter has found a chemist open and managed to get rehydration powder,plus energy drinks,having to put them in other mixers to make them tastier,also bonjela for adults.using straw going in every 10 min and making him drink,seems to have improved from this morning,used the hospital as a threat,if he did not drink something.
I think a divorce is on the way,before we are even married.
Thanks again eve
Hi Keith and NIgel
I just found your post when I was looking for some info on feeling so bad,my partner is just finishing 3 cycle of ctd and starts 4 on Friday.
The problem is he feels so bad,ended up in hospital yesterday,very dizzy ,turned out,low blood pressure and Dehydration ,although he was drinking well up to feeling lethargic last week ,went down hill last 2 days.
No fever but burning hot.
Dex usually gives him a bit of a lift,but not this time,can you two recommend any thing that helps you,as hospital looks at it as normal,except for bp which they say could be pills he his on.advice more fluids,
Has not taken to his bed fighting it all the way,not a good patient ,I would be glad of any advice. eve
Hi Gill
You must be over the moon,I am so glad for you both,never,never give up hope,we do not know what is round the corner:-)
It does make you think,were would you be,if the conversation about how much stem cells were taken last time?
Enjoy this lovely weather and have a lovely Easter .eve
Hi Everyone
Yes I can confirm kent south coast is basking in the sun,hotter than Spain,West Coast of France even Cyprus.24 degrees here in sunny Deal no wind sea as calm as can be,when its like this you cannot beat it.
We had planned a few days break only up the road,but Slim not well enough,first time out yesterday for a week,but he did enjoy watching the world go by on the sea front while I took Oscar for a walk.
As a northener who lives in the South,I can confirm the weather bit, but they do not have the same sense of humour,I miss the North for that reason.
Pack the car and come and see the garden of England it lifts your spirit just to see the blossom. eve
good on you girl,
Have a lovely evening eve
