Hi Gill
Such good news you both must be very pleased,Stephen should be a little bit better on the lower dose of Dex,and this might be the time to have those conversations :-)I believe the kidneys can regenerate,so any damage can repair.One day at a time Gill and you will soon be in France again.8-)
Slim was trying to reduce his dose of pain killers only by 5 once a day,and it just did not work,he has tried to do this three times since he hit remission,and we honestly thought with all the side effects,he had something going on some were,listening to Dai realised,with extra pain,it added to his confusion plus feeling ill,and going off his food,all the symptoms,when first starting Chemo.
So we have put on hold any talk of reducing present drugs,we go to Kings on 10 Feb.So now I have dates it is time to plan the short break.
Wishing you the best in the future.Eve
Hi Jo
Good to see you have got over your food poisoning,and back to your old self.
I get up to London occasionally ,last time to see Mama Mia with my daughters,unfortunately Slims has no interest in the theatre .
One of my Christmas presents are tickets to see Calender Girls locally in Canterbury in February,So a nice evening out for me.you would think he might be interested in nude bodies,but I think its asking a bit much for him to rise to the occasion.
Have you any more holidays planned.Love Eve
Thanks Dai
The penny has dropped.
Slims tried to come off his pain tablets a few times plus since not being on chemo he has forgotten to take his tablets going to bed a few times,specially when he was on ant-biotics ,because he had to take them on an empty stomach and his other tablets with food,he is the one that controls his tablets,as he feels I have taken over the rest of it.:-( so much for my nursing skills,he calls it nagging.
Slims on Oxcontin 30 mg twice a day its a prolonged release but is addictive
plus has liquid form and Adcal-D3 Omeprazole amitriptyline the consultant says the bone pain should be better because of Zometa.Slims a bit like you when it comes to shopping,needs trolley to lean on and cannot do more than 15 min,usually goes and has a coffee,standing still is the worst,
I thought coming of the Dex,made him loose his appetite and energy,just seemed to take a few steps backward coming off Chemo.
Dia have you thought about a cruise to Barcelona then flying back,when Slim had his hip replacement done we went to Egypt I could not fault the service in looking after him,he hated being driven in a buggy,made him feel old,and in Egypt he could not stand so wheelchair came out could not have had better service.
A motorhome is hard work,but driving a car is easy,I can see why Janet does not fancy driving,in 20 years I have never driven the Van home or abroad.
Slim was so ill had no choice,took a deep breath got into a 4 ton van and drove from west coast of France to home,must say I am very proud of myself.
would not worry again about it. LOL'
Thank you for info,set my mind at rest ,will keep an eye on Slims tablets
Eve
Hi Phil
Thanks for the good wishers,cannot book a cruise yet,even though we were hoping for a last minute short cruise from Dover.Slim has not heard from Kings and we have a number of hospital appointments in line,if I could get some dates,we might be able to get away.we do need this break.
I am finding this remission is Like a new ball game,but someone has forgotten to tell us the rules.
Slim expected to be feeling much better,which he is not plus it,s hard to know if his symptoms are any thing to do with Myeloma or just coming off chemo,he thought he would be able to reduce his pain medication,but this has not worked,at the moment his legs and stomach seem to be his main problems.feeling sick and off food,plus pain in his legs,Its like watching someone walk on hot coal.:-/
It is strange you wait so long for that magic word,but once you cross over
every symptom becomes a worry,I suppose as time goes on,it will be come less of a worry.Thanks again for every ones good wishers Eve
Hi Dai
From the sounds of it i would agree with Janet,except Lee Marvin was tone deaf.
Think your self lucky you can sing,at family events after a few drinks,if I made any attempt to head for the stage to sing,it use to be a race to stop me getting to the mike,even singing in the bath is banned:-(
I think singing is an expression of happiness.
I put it down to my deafness,but I do enjoy singing even though,I am hopeless.
Keep your spirit up.Eve
Hi Mandy
Welcome to the site,it must be worrying for you being so far away.One of my own daughters is in NZ,so have some knowledge of how helpless she felt although my husband,has me and our other 2 daughters.
I do not think anyone going through Chemo treatment has a good quality of life and many of the side effects,can bring you down to a very low state of mind,what I can say is it will get better,very hard to believe,when you are going through the mill,but every one will tell you the same.
The big thing is to keep your mum positive,as a carer of a man who was very ill last year,and watching things going from bad to worst,it was hard,this year he is in remission,not in the best of health, slowly improving .When you go from a healthy person,to a very sick person and the treatment makes you feel worse,your mother is going to feel very down.she must tell the staff all her symptoms get her to write them down,they can offer all sought of help.
Eve
Hi Chris
Thank you so much for posting,it does give us some in sight,knowing we have to make this big decision ,it is early days for us concerning SCT,just trying to get any information concerning SCT,its almost like having to take a couple of steps backward to advance, with not knowing if it will be worth the effort
(if that makes sense)!!!!
I think its because,its been so long with no progress,this is are first big brake,remission,and it has not been easy getting there.
Thank you Tom and Roz for your good wishers,Tom I am taking your advice Onward and Upward,and Roz you are often in my thoughts,i see that little glimmer of life coming back.Love Eve
Dai
You are not going to like me for saying this,but in the big picture of things,it does not matter what you would like,because at the end of the day ,Janet will continue to live,how she chooses to do it, it will be a measure of her self being!!!!!,Sorry DAi.
Find your fighting spirit , if you cannot get on trials,ask to have the drug any way,lets face it,you get to a stage and what have you got to loose,
On a personal note I have missed you sorely, not posting,your songs and lyrics ,and are occasionally confrontations ,I only wish I could be of more support,my love and best wishes to you and Janet.Eve
Dai I wish I could give you some sound advice,but the only thing I can think of,is if you reduce your water intake it must have an effect on your kidneys.
It is so wrong that you have to comply to a criteria ,were does that leave people like Slim,nothing shows in bloods or urine,I just know when things are not right,luckly I now have a GP who takes things on board.
I cannot say we are over the moon,with remission,still waiting on Kings!!!
and Slim not in the best of health,we are in a wait and see mode.
I can only say be positive until you hear any news.Eve
Hi Only Me
good to hear the good news about your mum,it is amazing the way things turn round from someone being so ill,and then responding to treatment,its just finding the right treatment.:-)
I think it,s very important to be positive,and to try to lead a normal life as possible,every one has there down days,and as you say there is only one way left and that,s up.
So good luck to your mum,its good to hear a positive story .Eve
Hi Val
My hubby suffers with his legs,not so much cramp or even PN, just very painful,they feel very hard around the calves,I massage his legs as much as possible to take some of the tension from the calves,plus walking seems to help,it seem his leg problem is more effected with the cold.
I will not tell you what Slim suggested,but it had to do with surgery.LOL:-S
I wonder if people with the same problem,find it worst in the winter,or may be because it is winter,you are less active??? Eve
Hi Michele
I can relate to your problem,as we are in the same position,at last we have remission,and waiting on Kings to see if my husband is suitable for SCT,his consultant says although very fit has had pneumonia which has damaged his lungs,so feels it might not be in his interest,but has told us to go to kings,they are the experts,so we await the letter.!!!!:-S
Slim condition has not been great since before Christmas,and now waiting on some blood test,to see how kidneys are plus other small problems.
We were thinking about the possibility of harvesting stem cells and freezing them for future use,because if he does not use them,may be they can be donated( just a thought).
I do not seem to be able to find any info on any one having SCT with same conditions as Slim,as they say every one is different and different treatments suit different people. Jo on here has not had SCT and is doing very well,so there are plus sides as well. Love Eve
Hi Bridget
Do not understand it myself LOL loosing the plot I think:-P Eve
Hi Gill
Gill you should never feel like that,this is when you need this site the most,because it,s hard to talk to family about it,and most of us carers have earned are stripes with DEX.:-/
I am able to say to Slim is it the DEX talking or Slim and he does calm down,its a bit harder in public ,when he makes a remark that,s uncalled fore. I found he was better on a reduced dose!!!Standing waiting at a check out has been the worst,just wished the floor would open up and swallow me:-( told him I would not take him out any more if he carried on,he behaved himself until he found some one else to have a go at.:-P he has never suffered fools lightly and Dex just makes it worst.
Must say thank god he is off it now:-)
May be instead of saying yes and keeping out of his way,its time to say no and explain you do not want your memories of him to be soiled by his Dexitude moments!!!!!!!.
Stephen must be scared about the future,that man who was so laid back,because he does not want to upset you,must be worried what the future holds,so you need to sit down and talk,it does work Gill.Love Eve
hi Everyone
Can some one tell me what has Gary O Brien??????? Eve
