Hi Gina Sister and Mum
How are things going,have been thinking of you,did you have a good wedding???
How are you holding up,it must be hard for the family,just to let you know you are not forgotten .Love Eve:-)
Hi David
Yes euphemism is another word for die if I am correct(don,t quote me),never went to school in my misspent youth.:-P and never been hot on grammar in Liverpool.LOL
It,s just the scouse sense of humour.Eve
Hi Wendy
Thanks for the info made a note of it,just in case,Slim does not suffer from PN but,has very heavy legs and twitches as he puts it.I usually read the health column of DM on here every day,must have been a heavy day and forgot.
Glad to see you are doing so well Eve
Hi Everyone
I agree completely some times I read it again and again,thinking what the h-e-l-l have I said,you could almost say heaven should be made offensive as both can be used in the wrong way.for eg: for heavens sake,is on a par with what the h-e-l-l-.and lets face it Tom told us all how to get round it,so if we wanted to swear away we could any way.
When it first happened to me,My thoughts were I had offended someone!!!!!
Love Eve
Hi David
I think you are a very wise man:-)
Does the number 4 bus run outside your house!!!! LOL
It is worth some planning David,just for the fact that relatives are so upset,and I often think taken advantage of at undertakers,I am not religious,but find it hard that the person who takes the service,gets paid £150 for less than 20 min work,and often makes silly mistakes when talking about the deceased,when my brother died the vicar kept talking about him calling him Brian,his name was Dennis,to me it made the whole thing an expensive farce,and lets face it you only do it once.:-P
My friend who was a teacher in her local village died from cancer age 50 not religious,after she died her husband was persuaded to have the service in the village church,which was packed out,with people who did not give a dam when she was alive,they made comments through the service,and my thoughts were this would be the last thing she would want.
I fancy a humanitarian service,followed by cremation,if I could I would have my wake before, LOL
I think I will start planning now,knowing me that number 4 bus might just find me. LOL love Eve
Hi Paul
Believe it or not in my miss spent youth as a scouser I spent a lot of time,walking hiking and climbing the only way to meet fit male bodies.
Live in the south now more sedate,nearest I get is the white cliffs of Dover,or the Saxon way but still very beautiful.
My Son-in-law Rob is the walker for charity and pleasure,did the three peaks in 24 hrs!!! with like minded people and raised over £6000 for childrens respite in Kent,I take it easier and go in a motor home, lol
Slims big thing was marathons,A marine for 24 years built like a whippet,feels very confined if indoors,
You are on your way to SCT make sure you look after yourself,and this time next year it will just seem like a bad dream Love Eve
Hi Dai
Well Tuesday was another day,bit frosty,but I did point out to a sister again it is no reflection on this department,went back again in afternoon for Velcade and things did seem a little bit better.
Slim is getting tired as he is half way through 5 cycle,it does show but still looks better than a few months ago(death warmed up)I know this because people say how well he looks,LOL
Have found some wonderful socks,that have no band at the top and these are helping with his legs,as always feels he has run a marathon,but the blighter insist on walking a couple of miles a day,no matter what>:-(
Hope you are keeping in good spirit Dai and planning a break ,a goal to look forward too. Love Eve
Hi Paul
You must be so pleased,start 2012 on a high.Good luck with ever thing and let us know how you get on,we need lots of good news for people coming after you.
Pennine Way or Three peaks next.Love Eve
Hi David and all these lovely people replying
To David and everyone else I am sorry for your loss,when it comes so close to home it hits harder,It seems cancer becomes so much more to the front when it enters your world,you notice how many people have it.
I have lost close relatives and good friends ,some very young,these people fought hard to live,some just to see there children,pass exams!!,so I do feel very strongly,that people should live life to the full and enjoy every day.That is the legacy they leave behind.
As for a short illness or long illness,I think you often do your mourning while people are alive,but no matter if you expect death it still feels like a crushing blow.Love Eve
Hi Sarah
Good to hear from you,no sign of the Ram!!!!!!
what you say is so true,Gordon loved his land and was privileged to die on it,and you have the comfort of your family around you.I consider grand kids your greatest asset,the future generation for the land you love so well,so his memory will always be there,you just have to decide were your future lies I am sure as time goes by you will find your own path.Love Eve
Hi Jo
I was thinking about you today,so sorry Jo you have been doing so well,Velcade has worked well for Slim,and they have caught you early,Let hope the BMB shows low results,I can only say its knocked Slims from 80% to 10% in bone marrow,that,s after 4 cycles twice a week,with no heavy side effects.
Ask away Jo,if we can help you we will.:-)
I know you have faith,so may your god go with you.Love Eve
Hi Dave
Tom said it you have been through the wars,and with the determination to walk again,I would say you are doing great,its a big thing,my hubby was lucky he had no compression of the spine,but a fair amount of bone damage.
if you have a look at under fifties there is someone on there who has eye problems ,I think that,s how Myeloma was discovered with him,cannot remember his name.!!
The fact is Dave the people who deal with Myeloma are blood people anything else is passed on to the appropriate department.
I take it when you say mental torture you are worrying about side effects,i can only say start learning about Myeloma then you will see some of these symptoms are side effects,you can always ask Ellen,e mail or phone,or come on here and ask away.
Regards Eve
Hi Helen,
I felt the same way as you when Slim was in hospital and thought wait until he came home,but I was so busy,bathing and looking after him day and night,the complaint never got done,and my verbal complaint never was dealt with,he will never go on that particular ward again,and now I stand my ground I take the view I know when he is ill.
It took a lot to complain because the nursing staff are excellent,but I have spoken to a number of different staff members to try to resolve the problem,after Tuesday I felt I had to do something as it was obvious something was going wrong with the system.10 months and only once drugs have been on time it is a long time to get chemo drugs up to wards on time.
I was not looking to blame someone just resolve the problem.
IT was such a little thing staff not saying hello,no eye contact,no good bye see you Tuesday,I thought they would be more professional,it did spoil are good news a bit.:-(.
Tuesday is another day,so see what it brings.Love Eve
Hi Gill
Well at least you are getting there,I know you said there was a good local doctor,who new about Myeloma,so that must be helpful if any thing goes wrong!!
How will travelling affect being on RCD????
We did have a week in Canterbury site as we had so many hospital appointments between us,it was cheaper and easier than travelling for each appointment.
I cannot see us making any long journey for sometime as Myeloma trials are monitored.also Slim if he hits plateau,then Kings for us to consider SCT but consultant not keen as lung damage earlier on.Then he will be randomised for maintenance or no maintenance.so a long way to go.
So the first good break we have will have to be France,but do have are sight set on New Zealand,to see 2 of my 7 grandchildren,it will be just nice to see grand kids without having to worry that Slim might catch any bugs from them,once they start school they seem to bring them all home.
Love Eve
Thanks again for all your wishers,yes I did over do it a teeny bit!!!,i had Slims share as he does not enjoy a drink!!!.
He over did it by not resting enough,found all this energy,and paid the price on Sunday after the walk,has been sleeping most of the day and night,making up for not sleeping well on Velcade.
2 week of 5 cycle this week.
On Friday as well as having such good news,I wrote a letter of complaint as we are waiting hours in hospital,we do two trips in one day 60 miles for bloods then come back for Velcade,always have a little wait,but the big one is the 1st day of cycle we now go in the day before for bloods,so they have 30 hrs to produce Velcade and chemo drugs,guess what!!!went in had 3 second injection of Velcade and waited 3 hours for chemo tablets.
I was calm,letter of complaint went in on Friday morning,turned up early on Friday afternoon as we had 3 app,that day so stayed in Canterbury,Velcade on time,but atmosphere not great,(cut it with a knife),my complaint was not against this department,or staff who do a wonderful job,and I. just wanted corrected what ever was going wrong.
IT was worded a complaint about,non co-operation between departments!!!,because results and medication go through at least 4 departments,and something goes wrong in the process,resulting in long waits for patient.
So did not expect this atmosphere( I have broad shoulders) and considering the bad treatment received in A&E and on a general ward,but marvellous treatment he received on ITU and Brabourne,I never complained so was shocked. I told the sister it was no reflection on her or here staff.:-(
So it did dampen our good news a bit. Love Eve
