Hi Gail
Howard can fight back but he needs all the help you can give him.
You do not say if he is on a ward or in ITU.!!
If he is on a ward get the dietician on board,and be there at meal times and feed him,even if it is only a few mouthfuls plus stay by his side and make him drink,its hard I did it for 22 days.Take anything in he will eat.the build up drinks help if he will take them plus they sometimes have shots that are 100 calories.
My husband was taken into ITU with Septic Pneumonia in ITU for 9 days and then on a ward for 12 days,they loose interest in everything,the drugs make them confused,and it takes time to get them eating drinking,and walking again.The nurses do not have time to do it.I was at the hospital from 8am to 8pm.looked after all my husbands care.hard work but doable.
The drugs will deal with the pneumonia,its the rest you have to deal with.
It is easy to right some one off,he just needs nursing,Slim came out at 9st 41b built him up again to 11st just has SCT and now weighs 9st8lbs,but this time he is healthy before,lots of damage to lungs.It is doable,but you have to do it.Eve
Just read previous mail is he in hospic or hospital after reading your previous post,it sounds if he is having palliative care.!!!!
Hi
I agree with John and Sue
Slim never got it until after he finished Velcade,he had Amitriptyline 5 to help him sleep,then when he was in Kings they gave him 25 and said it was a form of PN,I bought the Palmers cocoa butter Slim very seldom complains of his feet now.
I also get Polytar for his skin and must say since he washers in it,has never had any problems with dry skin.
It is worth trying these things.Eve
Hi Gill
I did not know what a banshee was either,heard the saying!!!!:-)made me laugh
Gill I know I am over the top when it comes to Slims eating,years ago he ate like a horse,but he is down to 61.8 k my daughters are all going on diets to stay below his weight.LOL.
For every ounce he looses I gain,I eat to keep him company,because eating is no pleasure,no taste buds at all,cleared the fridge out,and threw so many little pots of different thing away.
He does try,mornings are best by the evening had enough,
His platelets seem to be holding as no phone call from hospital,and I did not phone,as they would not do anything until Monday anyway.we are back there for bloods Monday.
It does seem if I nag him all the time,about food and fluids,has had extra fluids twice,plus blood plus about 5 units of platelets since leaving Kings.
How are Stephen and you doing,???? Love Eve
Hi Andy
That is why I asked were you are having treatment!!!,At the end of the day how do you feel about your treatment,There are Trials going on in all the major hospitals.
If you put Trials in the search engine on here it will come up with all trials plus were they are,If you ask Dai he will tell you his experience of not having the best of treatment.
There is a lot to be said about being on a Trial,I know Guinea Pig springs to mind,but you must feel low and sometimes you have to say I want some answers.
Do you know what type of Myeloma you have?? Some are more aggressive than others,
I can only give you an example with Slim.He has Kappa Light Chain IgG .With bone damage plus tumour and lesions,I was never told had to ask,and when asked what stage was told they do not stage it any more!!!,I know staging is a combination of bloods,kappa light chains plus bone damage.Told with new treatments looking at 7 years.!!!:-P
We considered Slim had no choice,he was offered trials and took them,We do not look at 7 years,just day by day and treatment.plus he went on the intensive pathway.18 months later,SCT| complete now wait for BMB to see if it has worked.
I am sure they have not liked us questioning everything,I want the best for Slim and will keep questioning and wanting to know how were and why.
Love Eve
ps in other words a pain in the ….. Eve
Hi Andy
I noticed you joined the forum in Feb this year,but started treatment in Oct 2011,I have followed your different treatments,I am just surprised they do not seem to give them much time to work,I say this because Slim started treatment in January 2011 and was still having chemo up to the Christmas2011.
It took a long time to get that stage for sct and as you know his was in May this year.So 18 months long haul.
I can only tell you Slims readings were not showing true,and only having BMB showed the true position,he did have lots of BMB I think 5 all together. If he had not been on the Myeloma Trials and having BMB I do not think it would have shown as CTD failed,then he had 4 cycles of Velcade before they took BMB to know if it was working.carried on for 6 cycles
If i am correct you have had 4 different treatments in 7 or 8 months?????
Have you questioned why they have with changed treatment????:-S
A few people have gone for SCT with levels high,You are young enough to have a good result from SCT.Is this your next option??
Were are you being treated. Love Eve
Hi Vicky
I think it is a man thing,but without meaning too you do as a carer tend to take over most things, It is there body. I suppose it,s just instincts to want to help and make them get better.
So he becomes the stubborn grumpy old man,and I become the nagging,fussing old lady.[it,s a very fine line]
Slim has an ally in Tom,but I think Tom would agree we women might fuss but we tend to be right about most things lol .Love Eve
Hi Gill and Wendy
I think it,s not until you start looking back,that you begin to wonder if you remember it as it was.!!!!
When Slim was in ITU they offer you a dairy that they will right for you,because you cannot remember anything about it,so you loose so many days.
Some nurses think its a good thing,that you have no memory of it.If you asked Slim about any of his treatment you would draw a blank,and he is happy with this.Me well there is things that I do not want to remember,just keep looking ahead.
i have always kept a large file on Slim with results of test,bloods,hospital letters anything to do with the treatments he has had,and I must say,this has been the best thing i have done,as the amount of times,it is used by hospital staff,and the amount of times I can confirm a conversation ,with a written result,so they actually believe me.:-P
So my big red file has been my own dairy in a way.Eve
Tom and Elaine
That,s smashing new for both of you,you both must be over the moon,with big smiles on your faces.
I hope you are going to treat the old woman to more than a drink!!!!,(I mean a night out,with all the trimmings) I could almost see what you were thinking then:-P
At least your holiday will be care free,and no hospital for months,that sounds wonderful in it,s self Love Eve and the old man.
Tom
We went very early,in and out in no time,they will phone this afternoon,if treatment needed,but I think we have turned the corner.8-) 😀 🙂
Slim is not trying to rush his recovery,enjoyed being out to day,but knows he is trying to run before he can walk:-P
So with a little bit of luck it will be bloods only.Love Eve
Hi Mari
Yes to all your questions,the rooms are a bit smaller than Davidson wards.
Good tv,Internet connections £15 for the month,small fridge,There is even a little view over the roof tops if you have a room on the left,many just have brick walls,I worked it out to over 100 steps plus,over 1 mile walking.It,s the steps at the train stations I found hard.
I use to get the train from Otford to Denmark hill,cheapest way for me was over 60 ticket.£5.80 a day.Weekends are a bit of a pain,always seem to be doing repairs on lines tried driving in on a Sunday it was awful.
Mari,if Steve has problem with a dry mouth,there is a spray that recreates saliva horrible but it works.
The staff were excellent,from cleaners right up to doctor,s could not fault them,the lady who was in the kitchen use to be over joyed when Slim ate something,it became like a challenge.
Have a holiday then face the challenge.Love Eve
Hi Dai
Now you know what his hospital is like:-P :'-( >:-(
1 hr to get there and park!!!we are like a piece of the furniture in the waiting room lol,
I watch all these new people starting treatment,and they just do not have a clue how much time they will spend in waiting rooms.
Its not the nurses fault they are just so over whelmed,some of them look as exhausted as me:-P
I consider Slim is an officially an institutionalised patient,its a wonder they do not give badges out,just to prove,another one bites the dust.Mind you it did take 18 months and he occasionally rebels.
Its the nurses who get all the flack,and there own managers in truth do not give a dam,and they are very aware its the patient who suffers.
A good example was Tuesdays treatment told to come in for 3pm,platelets came up at 4.14pm,So started off at 2pm and got home at 6pm.Platelets is a 20 min treatment!!!
OH dear have to get my soap box out again.So sorry Eve.:-)
Hi Jen
Did you ask if your Dad had any tumour,s or lesions!!! this could be the pain,but chemo drugs should stop it,you do not say what pain relief your dad is on!!!or how much weight he has lost.
Slim could not pick up a carry bag with a few items in,
Jen it all takes time,they know if things are working by the blood results,and kappa light chains,has he been back to hospital for second cycle and Zometa yet!!!!,they should do a general check list,weight,sickness ect.you should phone in if worried,even if its just for your own peace of mind.Temperature ,feeling ill are the things they want to know about.
As for picking up a 19 months child,that should be a no no,you do not want to cause any damage to bones.
If you do not have a book and info on this contact Ellen,
This can be a long journey,so prepare yourself.Love Eve
Hi
Well Friday bloods,Monday bloods Tuesday Platelets early hours took Slim to hospital temp39.Kept in Let out Wednesday evening.Good News Neuts 3.5 Platelets 57. Day off today,back Friday for bloods.:-P
Seems he was constipated !!!,thought i was keeping a good eye on that one!!!,I think part of problem is spending so much time at hospital,there is no routine for drinks food,and bowel movements.I feel just as exhausted as Slim.
Hoping this is the turning point,will see tomorrow:-D 🙂
Hope everyone is well Love Eve
Hi Mari
Go on the holiday,and enjoy it,out of the Myeloma Bubble,between different things Slim and I never managed a holiday,and i truthfully feel a holiday would have been good and relaxed us before it all started.hindsight is a wonderful thing.If we new the future decisions would be easier.8-)
Second SCT you thought you would not be able to do!!!!new things going on all the time,chances to be taken,its better than standing still,and waiting.So I say good luck and I wish you well.Debbie are co ordinator was very good,plus Waddington Ward,only thing was the food.>:-( :'-( gave in after watching Slim struggle took food in,because if he wanted something,it took some time to get it,and by the time it came ,he did not want it.
I do not envy you the travelling,Love Eve
Hi Jean
Slims had thrush,I think they put it down to not enough fluid,and with there system taking a beating it,s just one of those things.Slim has tablets at the moment in his SCT pack.
Just got up out of bed,Slims in hospital again,took him in last night,temp up,mainly took him in to check his bloods,They said everything was fine,but kept him in!!!!had to come home for dog.So its time to move my backside again and get back there.
Treat all these things as a learning curve Jean,otherwise you will be worn out on the first journey of the roller coaster.
I remember you were asking about protein ,its usually a marker if its high that,they like to keep an eye on,for Cancer but you know Frank has that.
But it can be a there for infection,like a cold. Love Eve
