Hi Teresa
I had problems posting that picture,I tried one of Slim and me sitting together,and just got his ear and mine,resorted to dog as only picture i could fit in,there are instructions on how to do it at the start,the web team will help you,you can contact them by E Mail,or someone reading this might come on board with a solution.
I get told off all the time by my daughter,for saying I am lucky,I look at my life and compare it with what other people go through,.So I suppose its how you,decide what is important in your life.I see LUCK more on human terms,so many people,with ill health,young and old,who have not had any chance of living a normal life.I should explain my eldest grandson,has a sever form of CP it effects all his body,but intellectually he is very bright,he cannot speak and is registered blind,not the life I would have chosen for my daughter or grandson,the incompetent midwife did that.After admitting liability the NHS retired her on a pension,so that,s my definition on Luck.Eve
Hi Andy
my local hospital is Canterbury which is 15 miles away,but the nearest hospital for SCT is kings in London. That is were the problem lies for most people on the SE Coast,but as I said my daughter lives nr Sevenoaks,so Camping on her drive,I wonder how much she will charge me:-/
I do not know if its any help,Slim had low potassium ,and could not take the tablets,so banana,s were the order of the day,cannot stand them now:-P ,it did seem to work.
Slim did resort to a pill to make him relax,it worked for Slim but had a bad effect on Dai,it made life a bit more normal for us instead of Slim asleep in chair and awake all night,sorry to say,it use to make me so angry,as my attitude was go to bed!!!!,and he was trying to stay awake,so we spent sometime together.:-( ,Love Eve
Hi Lynda
Good to hear things are OK with Pete,I think we all feel the same,just want a result and an ending,but it is early days for Pete.
I know he will have to go the hospital more,but if it works!!!!is Pete having sub cut or infusion???,Slim had to go,for blood test morning then infusion afternoon,the actual injection takes all of 3 seconds,use to drive Slim mad.
He had 6 cycles of Velcade,but knocked MM down to under 5% in bone marrow,3 months on he is at last having SCT,goes in to Kings on Monday .
When you are feeling ill,its easier to have treatment,but when you are feeling reasonable well,and you know the treatment,will make you feel ill and 4 weeks in hospital.It is a hard call.:-S
Let us know how Pete gets on,!! Love Eve
Hi Jo
Do not know Skaithos is it mainland or a Greek island,only been to the mainland once,we have always said we would do Cyprus with Motor Home,alas one of the many things on are list:-(
Just so pleased for you,after the scare of you might be needing treatment again,make the most of it.8-)Love Eve
Hi Tony
My husband Slim is on the Myeloma X1, he got the CTD side,because of his fitness he was on the intensive pathway.
I can only tell you to listen to your body,if you do not feel well, do not think you can cope with it,make sure you phone the hospital for advice,its a very hard call and you do not want to bother anyone,but it is very important to follow the instructions you have been given.
Slim use to think all his bad symptoms ,was the chemo,and they were not.
You will be taking so many tablets its worth making a chart,also do not be surprised if your personality changes a bit,if you have a wife she will tell you,taking bulk steroids,changes you,but does help to give you energy,to cope with the days,you feel a bit tired,taste also change,food and drink wise.:-P
The CTD did not work for Slim,so went on to Velcade and is now in remission took a year,and goes in Hospital next Monday for SCT.So it has all been worth while although at times it does wear you down.
Anyway welcome to the journey,there are a good bunch of people on here,with a wealth of experience plus a good nurse Ellen who will answer any questions.
You have an awful lot to take in,so take things a day at a time terminology will soon be second nature,hope to see you posting soon.Eve
Hi Dai
We bought are first van an old vw,because we had two old smelly jack russels, and having a guest house myself,did not fancy staying in one.First major trip was 6 weeks to Spain,wish we had done 3 months,that must be over 20 years ago. We now have a Concorde Charisma,will be living in it,when Slims in hospital for a month.
Have been to a lot of places,but love France,only 5% of the French go on holiday to a different country, understandable they have a bit of everything,and actually do not try to rip visits off.Do not speak French,but if you make the effort,it means so much to them.
It did become away of life,that,s why what we have now is different,cannot complain as we had 20 years,and Deal is a nice place to live.
Must be the Liverpool Lass about me I have to live very close to the sea, and Slim being an ex royal marine can live out of a suitcase
I have no faith,and my kids still think I am mad,but something was always urging me on to do what we did,IF we had waited until Slim had retired at 65,we would not had the life we did have,so someone is watching over me.Eve
Dai
We know there is not any choice,
One because at the start no one tells you your options,it is only after a sharp learning curve,it becomes apparent there just might have been better options,but when the word Cancer is mentioned ,with no cure,your just grateful for any treatment.:-/
Most of the European Countries start on Velcade,Looking back at Slims CTD he did 6 cycles only to be told the Myeloma had gone up to 80% in bone marrow,yes they were surprised,yes they changed his treatment to Velcade .
Did they treat him as an individual?? the answer is no.I have to ask myself if Slim had been a private patient would he have been given Velcade to begin with???and the answer is yes
So money and nice have a lot to answer for.NHS have guide lines and consultants are paid by the NHS,If you live in France or Spain for example Velcade is first line.Who said are NHS is the best????
I am trying to think of the name of the lady who was a radiographer who had Cancer and raised over 2 million for Cancer Research and was refused drugs worth a few pounds to give her more time.Her husband and daughter are carrying on her work,but what has not been said is in the early years there was a known fact that people who were exposed to imaging had a great % of getting Cancer.So duty of care did not mean a thing to the men in grey suits,and they have the power of life and death.Love Eve
Hi Jo
Must admit would give a lot,just to be in a warm place in the Motor Home,but have been told no travelling abroad for 6 months, as they are spending so much money trying to help Slim,I feel we must obey there rules.
Have you any nice trips planned??
Lets just hope that England has a glorious summer,just this second had a small hail stone shower,the sun is out,but N East wind blowing making it very cold,Spoke to soon.LOL.Eve
Hi Jorge
You are correct,not bad going for a man who considers he is old at 66 years LOL.Eve
Hi Andy
53 is young enough to consider a back to back SCT,So in some ways you are a lucky guy,it is surppose to be very effective at keeping the dreaded MM at bay.I mean lucky in MM and age terms if that makes sense.
Not many people go through 3 treatments in such a short time,at this rate,you will be having SCT in no time.I think why they like you PP to be as low as possible,is when it does come back,it returns at,a very low PP.(that,s if I am correct)I am sure if Ellen is looking in she will correct me if I am wrong
Being awake is no fun at 3am,when do you take your Dex???Slim could not sleep on Velcade,but do not know anything about Rev as not had that.I know you have not been married long but you must be like passing ships,at least the beds warm by the time you get in.LOL. Eve
Hi Dai
I can only comment on Zometa,and reading up on it,as Mavis says it,s suppose to help with Myeloma,although I have to say a dentist told us,it is more effective in the first few months!!!:-P
I am not like you Dai,I know I should have confidence in the experts,but it,s not there life,and there views differ so much,,so I will go on questioning there views,pest I might be,but a nice one with good intentions.Love Eve
Hi Mari
The long post just makes up for you not posting for awhile:-)
We all have are ups and downs on this rocky journey,some times I feel only the world of myeloma exsit,and then I have to remind myself there are lots of people struggling with different things,so I tell myself to snap out of it and be grateful.(:-) 🙂 🙂 smiley face comes on.
Gill and Stephen have gone to France for 5 weeks,so quality of life must be good as can be.I think they have been told what the out come will be,and have made decisions with this knowledge.
Must admit we thought long and hard about SCT,some Myelomas are hard to treat,and to be feeling good for the first time in a long time,then have SCT and write off 6 months not knowing how long you will get,is hard.But i don,t have to tell you,you have been there:-(
Any way enough of my thought,so nice to hear from you,Jet is posting might be worth flagging her to know more about her Next SCT.Love Eve
Hi Jo and Mavis
|Glad to hear,the new Cancer Centre at UCH is good,as both of you say,so much time spent in hospitals!!!
Mavis also glad to see you have escaped,must feel great to be home,the summer will not be long coming,and should help to get you back on your pins.
SS Bradford have come up to scratch,nice to see someone pulling out all the stops,I hope you are getting the financial and caring side up to date,as it does help,and Gordon can rest a bit.It might pay for you telephone bill in hospital LOL
Good luck with CDT and remember you will have DEX moments.Love Eve
Hi mari
Last we heard,Stephen was going on Velcade I do not know if I have missed any post,but did the Velcade work,it has worked for Slim and he goes for SCTend of month. If I am correct Stephen did not get a lot of remission last time.!!!!
Hope things are good with you both.Eve
Hi Jorge
Nice to here from you old man,if I called my hubby that he would read me the riot act. LOL
You seem to have God in your life ,so may be he is the only carer you need,you seem to be doing very well on it.Do not right yourself off to soon,people are getting past a 10 year remission and with new drugs in the pipe line,you might live to be an old man,we have a 80 odds on here but he is young at heart name Ted.So there is a chance for you yet.Eve
