Hi Andy
Sorry to here your news,this just might be some help to you!!!!
In the under fifty ,s there is a chap called Mike Barker who,if i am correct has SCT when his PP were high,again if i read about it correctly,he decided with his consultant to go ahead with SCT.
It might be worth checking his post!!! I do not think he has posted for some time,but he does tend to reply if you contact him.
Hope this might give you a boost,
Try to hang on to the fact this Myeloma is very individual,Slim is now in his 14 months of treatment and only just going for SCT,yet other people are a few months with Myeloma and are having SCT.
Its should be all about individual treatment for the person with the individual Myeloma,but NICE has to much say in deciding treatment.Eve
Hi Teresa
It never ceases to amaze me how many carers cope for years,on there own,not just people who are away from their family,people who just seem to manage on there own.
I am not one of them,I found this forum last year and must admit if I have any doubt or do not feel things are going the way they should,I tend to come on here and gets lots of people opinions,which gives me some in sight
-8 in Canada and 23 in Newcastle and on the S E Coast sun out but NW wind blowing.Its a small world.Just cannot imagine Slim in shorts and tshirt,that,s all he use to wear.Its layers of clothes and a heated blanket.Eve
Hi Everyone
Well Tom it,s good to know I am not a deaf grey haired old lady and Slims not got a Complete chemo ,brain.my daughter came for the first meeting for a SCT and she confirmed to me its not panning out as explained.
Explained to us as 2 consecutive day of test,then decisions ,then cyclo and injections then harvest then SCT.
After the initial meeting at Kings.
Went up for chest xray,cardiac monitor and lots of blood test
OK,d on phone, third visit chemo and given injections for 7 days
Due in Kings on Thursday for Harvest.
Since then we have received two letters for 4th and 5th
one for cardiac trans thoracic echo and one for CAT scan
This is in all 6 journeys round trip each time of at least 150 miles
They actually wanted to make it 7 journeys they wanted us to travel to kings to sign a consent form they spoke to Slim on phone who asked them were they joking,and refused.we have the date provisionally for SCT as the 12 of April.
I would have thought with all the knowledge of the last 14 months,these test would have been carried out before ,preparation for harvest,just told doctor ordered them after first test.
So were does that leave Slim:-S,Is this normal,it does seem to me a bit,back to front.
Would be glad of any in put from people who have had SCT. Eve
Hi Bridget
Thanks for that tip,It has always been the case they are not obliged to tell you about all the help you can get,some things are very wrong with our society.
All this media attention,has increased attacks on disabled people,a couple of months ago,Slim was verbally attacked at the bank,he was on sticks and sat down,a man next to him,just started on him,when Slim asked him what it had to do with him,he came out with I pay my taxes!!!
I would say to anyone who makes a judgement on someone,try walking a mile in their shoes,before making a comment.Eve
Hi Gill
My fingers are crossed for you:-)
Why do men never tell you what,s going on ? Slim says it because I make a fuss and would cart him off to hospital!!!!,I call it caring !!
Lets hope its just a blip Gill,and you will get that holiday. I envy you,being able to get away,it is now 17 months since we came back from France,every day I walk along the sea front and most days you can see France,some times on a clear day,the cliffs are very clear,so pure envy is in my heart.Eve
Hi Jean
So sorry to hear your news,even if it is expected,you still feel the blow.
Do people take comfort that people they love are no longer suffering,or feel there is no justice that some ones life has been cut short,and they will miss so much of loved ones future lives.
You have your faith Jean,this must give you some comfort,I hope the future brings happy days.Eve
Hi
Well I have to say Dai I feared the worst,Slim has no memory ,so he has no fear,he goes into this hoping for the best,his decision ,up to now I have felt positive,started procedure only to receive a letter,with appointment for cat scan,how can they start this and then decide he has to have a scan!!!,they want us to travel 86 miles to sign a piece of paper,feel if I am loosing the plot,I think when we go up to London next Friday,I will want answers as,i was surprised at lack of test done before decision of Slims health was considered to be fit.although I asked about lack of test and told everything would show up in blood taken!!!!!:-P
I think I have questions to ask?? makes one loose confidence in the procedure or is this just me being eve???? Love Eve
hi Dai
Out of interest,have you ever seen or heard of the Zulu warrior,the reason I ask,is you mentioning the local barracks requesting rebel songs,they were banned in barracks ,Once heard and seen never forgotten.
I think the words ring true,kill or be killed.different world.time and place, keep writing,you have something to say ,love Eve
Dai
I hope you are going to put music to those lyrics ?
It reminds me a bit of the Irish rebel songs of the sixties, believe it or not the forces use to listen to them too.
Hope to hear it to music soon Love Eve
Hi Viv
I was hoping you would get some reply,s from people in your dad,s position,so I am boosting this to see if some people can help you.
People do get very tired,but you have to make the most of the times you have some energy,and make plans to go out even if its a walk round the block,all doctors will tell your dad to excise ,they chemo takes a lot out of you,and does make you feel ill,make sure your dad tells the nurses how he feels as some symptoms can be controlled. hope this helps.Eve
Hi Dai
You are doing what you do best!!
I have a time it,s 4am don.t ask what I associate it with,but sure enough when it strikes 4am,I look at the clock and know the time without looking!!!
I do think about a lot of things and often wish I took a pen and paper to bed,my daughter does this every night,so you keep on with your writing time does does not,have any meaning,when you have nothing to conform too.
Love Eve
Thank You Everyone
For your good wishers,very very impressed with Kings Chemo unit,it took us be surprise,after local hospital,the staff were very impressive,not one walked by looking down at the floor,and everyone kept checking all monitors.
Gives us more confidence in SCT.
Slim sleeping after busy time,next stage is harvest,so date fixed,will let you know how it goes,Thanks again for all your good wishers.Eve
Hi Dai
Sorry i have missed your post.Rearly good to hear new treatment is working,and you have some releave from the pain.
Finding i cannot keep up with the post,think its because as things improved with Slim,my middle of the night,being wide awake has faded and now sleeping well myself,
It is lovely to hear the old Dai back again,Love Eve
Hi Tom
Well managed a few days away in motor home,but came home early Slim not to well,have been waiting on a phone call from Kings to tell us results,only to find they,did not ring mobile as requested,but left message on answer machine
So its Kings again on Monday,for 6 hr drip,Slim has decided to go for SCT to see if he can maintain a reasonable quality of health.
Seen new pictures from your facebook,did you go for the outing too?????
Lovely day on S Coast,shame we have to go to London,on Monday,we are staying at daughters in W Kent,so the journey will not be so long.
So looking forward to spring,I think when Slim is in hospital for upto a month,the bluebells will be out,so will miss them again.
Looks if are 1st wedding anniversary he might just get out,still have not had party for wedding,so when he gets over this will have to make it a big party.Eve
Hi Viv
Welcome,this is going to be a big learning curve in your life ,and many times you are going to wish you are not here.There is no cure for Myeloma but it is treatable,how long a person lives depends on how they view there world,there hopes and dreams.
You have had Cancer yourself so you know the problems,We live in this world of Cancer and we all deal with it so different,I often think the mental aspect is more important,ask you self what will give your dad the will to live,or will he choose another root which is more acceptable to him!!!!
At the end of the day its his choice ,If it was my husband I would be dragging him out,lunch,walks any thing,rather than looking at 4 walls,but we are all different,his life,his choice.eve
