Hi Lynne
I am so sorry for your loss,this Myeloma is a hard road to take,and John,s seems to be harder than most,the last few weeks must have been some of the saddest days tinged with lots of love and memories,my thoughts are with you,and I hope,that as time passes all the good memories will makes you smile.Love Eve
Hi Pennie and Andy
It is nice to hear you are sounding a bit more positive.Do not forget any problems with AA appeal,I hate to say it but things are going to get worse before they get better,sometimes the chemo takes so much out of you.
I had to replace white carpets with laminated flooring,I will let you guess why.:-|
The more chemo and infections you have the longer it takes to recover,plus age factor.:-S
Pennnie I know a lot of people on here use a small recording device,they only cost about £25 it helps with remembering the conversation.
On a more personal note,I think you have done the right thing work wise,this time you have together is important,but make sure you leave space for yourself,this is my biggest down fall,I am not very good at doing this,and in turn I get very tired plus,short tempered,it does not help when you are dealing with someone who is changing before your eyes. Eve
Hi Gill
So glad for you both,hope Stephens sight comes back,Very tough place to have lesions,they can do wonders these days,and I can say they would not have done it,if there was chance of more damage,
As for the jag well what can one say,I have looked at those cars and my own personal thoughts are so rude an extension of a personal part8-) ,so It will be boys and there toys.:-D
Hope you have many hours laying prone while driving lol,Eve
Hi Helen
Who has not introduced her self,my name is Eve and I am a carer,have to say MY GOD,33 and pneumonia in itu leg op,and you thought you had a bad knee,you could laugh if it was not so serious.
One good thing being based in London gives you lots of scope for trials plus the best treatment that is available,
I have just come on to say welcome and I wish you well,found you when i answered Keith,s post,Good luck on your journey.Eve
Hi Keith
I wish I could help you but I cannot,I know Dex does not help sugar levels,plus I know since Slim has been on chemo his cravings for sugar are unbelievable, never touched sugar before,do I put him on a fad food diet,!!!,my attitude is what ever he will eat,cannot afford to loose any more weight:-S
I know all about green tea,green vedge plus spices just prove it to me,I do not buy it:-P
To put it bluntly,moan all you like,we all get p—-d of at times and any body who objects,try joining the real world.
Give people some time there might be people out there with the same problem or look at it another way you might be a trail blazer, there is a first time for everything even if you do not want to be there:-(Love Eve
Hi Ali
This is the hard bit,you mum will sleep a lot,take a book to read,if the clothes are soiled just get the nurses to throw them away,this is were your mum will feel if she is loosing control,very emotional for her,the nurses understand,but expect a few tears,you keep your chin up,tell your mum she is through the worst,the nurses should be able to tell you when the neutrophils should start picking up,so you can count the days off.
At this stage even the nurses do not see the point of eating if you are going to throw up,but ice cream seemed to help Slim,plenty of fluid,anything that will go down.cold milk was Slims chosen drink.
Tell your mum we are all wishing her well.Eve
Hi Dai
I would agree with you about the infection,hope you are taking a sample when you see doctor,you have to find out which one it is.:-P
When Slim was discharged from Kings he was given 200 paracetamol,bit of a shock to be given so many,as you cannot buy more than 30 over the counter,get depressed enough,they might help.:-(, I do not take Slim in for 38 temps,they consider it border line anyway,just dose him up and do my own ops every 2 hours.No beds border line,hours in A&E just not worth it.
I would ask for a list of all side effects for your chemo as you will find your symptoms on the list:-S they often forget to tell you,if you look at how much chemo you have had,the gut and bowel are the last domain for it.
Lets find some good news the Olympics have been good and they seem to have restored some pride in GB,and its been so nice to watch so much of it,specially for Slim as he is a bit house bound.he even watched all the Doris,s playing foot ball lol,If your tummy bug carries on you will have to get a TV in the loo:-0 love Eve
Hi Wendy
Good for you that's the way to go;-) Eve
Hi Mari
Glad you had a lovely holiday,and Steve,s feeling a lot better,just what was needed,when we asked about going away it was a complete no no,but are own personal circumstances would have taken over any way.
So on Wednesday I will look out for a tall man who looks if he has moth eaten hair lol,you tell Steve to look out for Slim the name says it all,wish I could say he looks healthy,but the best way I can describe him is skin and bones with alight fluff on his head,even lost his Denis Healey eye brows lol
He is in day operations in Canterbury today they are taking the Hickman line out after 4 months,if he is well travelling to Otford Tuesday and hoping ti travel in by train:-P
If Debbie is around she will remember Slim,I do not envy all those appointments all over the hospital,but I must say they do a good job of fitting you in,even if your appointment is ment to be later.
Sorry to hear about your Dad this s just another thing to add to the mix,hope things get back to as normal as they can be in the circumstances.love Eve
Hi Dai
How are things going!!!!
At least you have had some good sport to watch,why you are feeling off colour,I just hope it was in your own home and not in hospital with a high temperature.:-(
Slims in today in the day unit,they are taking his line out at last!!!although his platelets are only 50 I think it is a good thing. Eve
Hi Andy
Slim says that why worry about it if you cannot change it,and he sleeps like a baby,it's me up in the middle of the night:-/
It,s the unknown that is worrying,I am sure once you go,you will feel more assured,have you far to travel!!!
Although Slim is on trials ,it was worrying to see no progress and very worrying,watching other people sail through chemo and go on to SCT,but he got there in the end,and so will you Andy,you are young and fit,
So good luck.Eve
Dear Gill
You know we are all thinking of you in this bad time,so have a go all you like we do understand,you are in a position were no one wants to be in,and we all just feel for you Gill.
I hope the radotherapist can easy Stephens pain,I cannot imagin how you are coping with that,they can do wonders these days,they have machines that can pin point small areas .
I hope you have lots of support from family and are getting some help from outside as you will be exhausted,I wish there was more we could do,apart from offering sympathy,but there is not,Love Eve
It's lovely to hear your consultant is going that extra mile for Stephen.
Dear Gill
What can I say???
Reading between the lines I have been waiting for you to post,as you say in denial,but it keeps you going,if it did not everyone would give up at the beginning,and at the end of the day Stephen and you are fighters,but some times enough is enough,it's being able to see it and accept it.
What matters now is Stephens comfort and being free from pain,I find when Slim is being a pain in the a——— it is usually because he is in pain,I would speak to the palliative team doctor she is very nice and she deals with pain management at Kings,ring up and get an appointment,she can help in so many ways.You need you memories of him to be pleasant and people forget not ever one has that.
If I could give you a hug I would,some times life is so unfair,and this is one of them.
Slims myeloma is the same blood results and urine show ok,but BMB have always shown how it is found in bones,he has BMB next week.
We will be up in Kings for the Wednesday afternoon clinic let me know if you are about!!!
Gill I do not know if you have those magic White pills from the doctor for yourself,but they do help to keep your emotions in check:-P ,
I wish you well on this new journey,my love and thoughts are with you. Love Eve
Hi Judy
I am sorry about you husband,you do not say much in your posting and have seemed to carry this burden with your family,but your husband was one of the Myeloma victims as well,so my thoughts on what you have endured go out to you.
I replied on Teresa,s thread because,you did not put your own,thread on,and I can only guess that you are trying to give Teresa some comfort rather than seeking comfort yourself!!!
My thoughts are with you at this sad time .Eve
Hi Chris
Its sad we do not have something like the Myeloma Beacon Survive,s Site,
then we would know how many people are doing well after so many years the longest I heard about before you was 18 years,lots of 10 to 12 years and still going strong.
When I am feeling a bit down,and I am only the carer,I go to the American site,and it makes me realise,it can be done,even with lots of bone damage,its getting control of the Myeloma that counts,So thanks again Chris.Eve
