Hi Onlyme
As Tom said cat nap it does work,It is hard,and your Dad does not sound if he is coping well,The house can wait,i think you need to take your Dad on that walk with you,he is trying to be brave for all of you,you cannot help your mum much but you can help your Dad,come to terms with what is going on.
It is exhausting,but you will be surprised what your body can take,if you are having difficulty keeping your emotions in check in front of your Mum,and you do not want her to know her condition,I advise you to speak to your doctor who can prescribe some thing to get you through this bad time.
It will help you, Love Eve
Dear Avis
I do admire all these people who go the extra mile,it is so nice the firm you work for is making Myeloma there charity of the year.
I find it takes me all my time just to function and I am just the carer.
I wish you well Avis .Eve
Hi you two
I can only say take the chance you have been given,Slim and I were very unsure,one because his own consultant thought Slim had to much damage to his lungs.So at the end of the day it had to be Slims choice,I would never have forgiven myself if I pushed him,and he died.
He has now had his SCT,and he said it was not as bad as he thought!!!!!,at the moment he is saying never again,but doesn,t every woman say that when she has a baby.Am I wrong to compare it!!!!!!!
If it works it will buy Slim double the time,I thought I nearly lost him last year,and I can only tell you,this year has been terribly hard,but I would not have missed it for one minute.I value every minute I have left with Slim.Love Eve
Please do not worry about feeling down,this is were you should come when you do,as we all understand and lots of us have been in situations that have been very difficult.
A year last Easter Slim was in ITU,we actually got married in ITU so that in its self explains how bad things were,he still tells everyone I married him when he was full of drugs and could not say no.;-)Min was the person who helped me then,she has since lost her husband.
So try to remain positive,I know that seems a bit silly,because all wild thoughts are going on in your head,but you do have to look after yourself,to be strong for your mum and dad.
Love Eve
That is very sad news for you and your family,I would say you have done the right thing in not telling your mum,but if she starts guessing i would tell her as,she might have things to say,that need to be said.
We tend to try to protect the person that is ill,but sometimes its good to talk about it,as you find out what they would like,I know when Slims time comes he would prefer to be at home.and he told me he does not want an expensive funeral,so these are his wishers.
I hope they can get your mums platelets up,as this will make her feel so much better,then they can see what is going on with the liver,
Try to be strong for your lovely mum.Eve
Dai
All that sounds like a wonderful heavy day,you must be very proud,as an event like that takes a lot of organisation and lots of hard work.
I wonder how these wonderful people find all the energy to do all these events,my Son in law has just done a support driver for people who cycled to Lands End from Canterbury in aid of Cancer plus Demelzer House which is a respite for very sick children.
There is so much good going on in this Country even in times of hardship.
Thank you for a lovely posting it is started my day with a smile,even if the day is going to be spent in the hospital.(bloods and Platelets:-P)love Eve
Hi Dee
WE live in Deal kent,it is my husband who has Kappa Light Chain Myeloma,
He is treated at Canterbury,He was diagnosed after many months of pain,and weight loss,that was August 2010,finally diagnosed February 2011 18 months on Myeloma Trials X1 which might be available to your Dad ,he finished Chemo, he has just had a Stem Cell Transplant at Kings in London.:-) That is a long way off for you,and you are just better thinking about today.I am only telling you to show you,there is hope, 🙂
Take one step at a time,your Dad is in the best place to control his symptoms
If you need any advice,just let me know,Eve
Hi Dee
I know all this is worrying,and you will continue to worry,but take some deep breaths,and think I can do this,and the calmer you stay,the more help you will be to your Dad.
Right now your Dad has a lot of the symptoms,which are not very nice,the first thing they will do is control the symptoms,stop Dad being sick,and help him regain some energy.Then all the test begin.
A lot of Myeloma patients have fractures,plus lesions and damage to different parts of the body specially if it has not been caught early,
The only way of confirming Myeloma is a BMB which is done in the hospital.
Your Dad is starting a journey,which we are all on,either as patient or carer or family or friend.
Things seem terrible at this moment,but they will get better,take one day at a time,and start learning about it,treat it as a learning curve and you will not be so afraid for your lovely Dad and it turn will be able to help him.Eve
Dee i have just looked at your profile and noticed you live in South East,were about are you and which hospital do you attend,I live SE Kent
Glad to hear mum is feeling better,
When Slim was first taken in to hospital it was with AKF and hypo-calcuimia(spelling) ,within 48 hrs the difference was amazing,
The Kidneys should clear but it,s sensible to make sure your mums fluids is high to help clear any chemo.
As for sunshine its no fun for Slim long sleeves hat and factor 50:-( .is the most important with chemo,at least all the clothes hide the weight he has lost lol:-)
Wish your mum the best from me Eve
Hi Mari Sarah and Min
My Problem Mari is I am deaf so phones are a no no,I hate them,miss a lot of the conversation!!!, so prefer to do face to face,If Slim goes on the phone by the time he has come off,he cannot remember what was said,lol
Would be interested to know how you get on Sarah,I know a few people who actually do counselling,may be that,s what puts me off it.
Min,your right ,I know they say when people have this they worry once they come out of hospital I suppose its a very fine line to walk on until you get use to the ups and downs.
Felt a bit better after talking to the nurse about it,so much emphasis is put on the main SCT then BOOM!!! out you go,get on with it,with very little knowledge except if he,s ill take him in.
As you know to your cost,with Peter its a fine line,
I will look at it as another learning curve there has been so many over 18 months, Love Eve
Hi Tim Jo and Sue
Went to hospital today,and Slim had more platelets,the sister said it is normal,and she thinks Slim looks very good after SCT,but he now weighs 62k so all skin and bones.
Going for bloods on Friday instead of tomorrow so will be able to see how far they drop,today before platelets they were 10 and neuts 1.0,he says he knows when he needs them as his legs become very heavy.
Needs potassium so,banana,s apricots,prunes,on there way as unable to take the tablets,.They upset his stomach.
It seems they will not give him a course of injections to help his neutrophils if they are over 1.0 which they are.
learning something new all the time,Love Eve
Hi Rachael
Lots and lots of fluid,any thing that goes down,Jo use to take the tablets in yoghurt to get them down,the whole illness is a roller coaster ride,with highs and lows,
My advice is get your mum on here and she will see how quickly people respond,and it will help her,because this whole thing can make you very depressed.I hope they sent your mum out with a course of antibiotics.Eve
Thank you Helen and Ozzy
For your replies,
When Slim was in hospital at Kings he had 5 units of platelets,Then when he was taken in to Canterbury hospital he was given 3 units of blood and 1 unit of Platelets,He has been out 10 days and had 2 more units of platelets,and we go in this afternoon for another unit.
I asked the consultant in Kings,he only had the results from Kings not Canterbury,he said the last results were good,but he had had Platelets the day before.
His Neutrophils have been up and down,I know if they increase so will his platelets,I am just surprised they do not seem to think he needs another course of injections to get his neutrophils to go up.
I just have not heard anyone on here having this problem,and as I said,the hospital do not seem to worried about this,although a staff nurse did ask when we would see a consultant again.The problem with this is we are still under Kings for 100 days,although I can ring the myeloma nurse,the treatment is being done in Canterbury,who do the bloods and platelets,so how much the correspond with each other I do not know.
So you understand my concerns,Eve
Hi Ozzy
Getting Myeloma does make you question,how you manage the rest of your life,I think in that respect it is not a bad thing as you value things more.
Ozzy if I am correct everyone has a certain amount of these cells in the bone marrow its when it goes above 5 it becomes an issue might be worth ringing Ellen,to confirm.!!!!
Have a good holiday,and enjoy your retirement ,the only think about retirement is you never get a day off.Love Eve
Hi Sarah
Sorry I cannot help you with the rash,Henry does sound if he is over doing it a bit,but that,s what men do,the desire to be back to normal is strong,Slim is the same.I do not know if this is any help to you,but Slim has used a product called POLYTAR from boots,its for people who have trouble with skin,I also rub him down with coco butter milk from boots this seems to help.
Slim has been attending the hospital for 18 months and only just, last month has had his SCT,as time goes on you do become an institutionalised patient and carer,its a known term,meaning you just get used to waiting hours to see doctor,s and nurses.
Sarah You need to look after yourself and have a few hours to yourself,I know its easy to say,and I find it hard to do myself but every now and then I meet a friend for a walk or drink and it does help.
I do pop a little white pill,which my doctor tells me it will keep my emotions under control,and so far I have not bitten any ones head off,so they must be working,although some times the tears are not far from the surface,so i just give myself a kick up the bum,It helps.Eve
