Hi Dawn
May be its the age factor,although a larger lady,my upbringing ,was meat and two vedge healthy eating,a generation thing,the only thing I used coke for was to clean my gold rings,and sugar.is none existence in the house,same as ready meals,every thing is always fresh,biggest down fall is wine and cheese.
When you are first diagnosed,you should have received a booklet with what food is appropriate ,it's mainly a healthy balanced diet,but reading sharply,s post,I can only assume,it's the fact I am older,I often look at what people buy,and wonder do people realise what goes into these packets of food.
There was an article in the Daily Mail,were scientist have discovered in people's DNA reasons why some people are more likely to get some cancers.
Slim weight is 66k at the moment,so I am grateful ,if he ask for any type of food,but I am now grateful for the chemical mix of shot which contain 150 cl in a mouthful. Eve
Look at Tom,thinking of putting Slim on the same diet!!!
Hi Dawn
I read all the links and I must admit the one about the doctor,s how they die,is a well known fact,they take what is left of there life,and enjoy the quality,without the drugs,seems fare to me.
If you are looking at diets at this stage of Myeloma you are clutching at straws,for what ever time you have left,you should at least enjoy,eating and drinking what ever you like,I would be inclined to think,doctor,s. know best,that's why they choose,there own route,it takes a brave person to do it.
Some one said to me, there not scared of dying,just how they die is important. Eve
Hi Tina
I am a great believer in a good cry,to me it,s just away of releasing all the tensions and fears,better to cry than get angry.
You have just had a very hard year,and you had something to fight for,your life,now you are in remission,you do not understand why you feel like this now,it's because you held it all back at the time,and now when every thing is calm,it's coming to the fore,I do think you need to see your doctor before depression takes a hold on you,the sooner the better,
As for coming off maintenance ,other people are doing the same,mainly because there health is being effected,at this stage your own health should be your priority,so you can enjoy years of remission . Good Luck Jean get the Motorhome out and enjoy a few holidays. Love Eve
Hi Christine
I would say you had a bad reaction to the chemo,if I am correct you can have a different chemo,s,I take it this one was the one you have before you start your injections!!
Put some baby wipes in the fridge,it helps when you are constantly going to the toilet,much better than toilet paper.
I can understand why you are worried,but it only last for a short time,one day at a time. Love Eve
Hi Jean
What can I say? You are at a level of stress that most people cannot understand:-S
Work wise if they have any understanding they should give you tine off!!!
You say you will do anything and take your chances,and I am sure Mike will do what ever you want,but it's not about you it's about Mike,I do know how hard it is for you,but Mike has to choose. It is his life!!!:-(
What options does he have left????,how about any old treatments that did work???
I wish I could be more help,the sad thing is people with Myeloma is that infection is the biggest killer,:'-(
I wish you well Jean,if I can help go to my profile and send a private E Mail. Eve
Hi David
Well I never!!! You have your own doctor going with you,I know you are a bib and braces chap,but own doctor travelling,why worry.!!!!
I love France Slim has had 2 emergency appointments in the past,one doctor one dentist,no problems,never bothered to claim money back.So you enjoy,if you do not get to Greece,France is lovely at that time of year on the west coast,,hire a Motorhome ,left the better half drive,and use air de services,wonderful life.!!!! Love Eve
Hi Scott
Are journeys often began,in a little place called Deal on the Kent coast ,they would send us appointment for harvesting have to be there nine am,got home nine pm,and back the next day as not enough stem cells.when it came to SCT I drove are Motorhome to my daughters in Kemsing,and I stayed in Motorhome. Nearest hospital that does SCT is Kings,I would love Slim to still be at Kings as I think they have better equipment ,but alas the journey is far to much.
Slim enjoyed having his own mug from home,as hospital tea cups are so small,they do not like you having ice lolly,s at Kings,so as much mouth wash as possible,good coffee,I use to stop and bring one up with me for Slim.if you see Debbie give her my regards,she travels everyday from Folkestone ,she was a bit of a Rock the first time Slim went in,my grandson died and Slim came out,and went in again later.
It is a very emotional time,so do not play the hard man,let the tears flow,as it gets it out of your system,it's a big build up to SCT, one day at a time. Love Eve
Hi David
As far as I know this is the correct information,but we have people on this site who live in France and should be able to con firm or disagree.
The following
If you have to see a doctor or dentist standard charge use to be 20 euro,s,you can claim that back but lots of paper work
The big thing is major treatment as a pensioner you should be covered for any emergency!!!
Take a situation,were its a heart attack!!!! To stabilise. You it's an emergency,but would it be considered an emergency to operate!!!!,I do know one gentleman who was a pensioner,who had to pay 21 percent of a £30000 pound operation,and they pested him until he paid.:-P
Can you not get an insurance that does not cover you for Cancer!!! Lets face it David,who needs emergency treatment for Cancer,lets face it you are more likely to need it for a heart attack, take antibiotics with you just in case of high temp.
My own attitude is 1 week, go and enjoy yourself,end of day if you ended up in hospital,you can always get another flight home,or get one of the family to drive to France and pick you up,every were in France is accessible in 2 days
I know lots and lots of people like Slim and myself who travel on NHS card,attitude if you die there,bring the body home in an urn ,I think your attitude to that is more important .
I hope all this is correct,all those people who live in France do not hesitate to correct an mistakes.Love Eve
Hi Scott
Well what ward are you in,some have better views than others,instead of looking at a brick wall,you can look at half a brick wall:-P ,I hope you have brushed up on your language,I do not mean swearing either,lots and lots people from different countries.
Debbie is very nice,the hospital shop sells any thing,and we found. The staff excellent, old clothes are a must,as hard work trying to get from bed to toilet when you have a machine for fluids,plus driver for drugs ,as big as Kings is,I could not find anything that was inefficient ,I hated the train journey,started my journey at Seal to Denmark Hill,I worked it the whole journey in and out was over 100 steps plus 3 miles walking,I seemed to take more in than I brought home.Did it by car on Sundays as trains were always a reduced service.
I cannot think of a better hospital to be in for such a major procedure .Good Luck. Eve
Hi Vanessa
I can remember when Slim was on trials and he was randomised for no maintenance,and yes I felt a bit peeved ,but it did give us a bit more freedom,plus look at people who have chosen not to have maintenance like Vicky,s husband,or people like Babs who were constantly ill,and came off maintenance,so you have to ask your self are we really missing out on anything.:-)
Now PP 15 ,you are in wait and see mode,they could go down,or rise,,let's say they rise plus you have to start again,then it's Velcade,which is having good results.
Lets say they might go down,which they do,depending on,general condition,your husbands PP just might stay the same.
We have all felt as you feel some time on this roller coaster,this is a life time journey,be it short or long,no one knows,but you are spoiling today by worrying about something that has not happened ,not good for you both or your baby.
The consultant might have made a mistake,I do not know,it's great having hind site ,it's no use saying what if,may be I look at life differently,I tend to think these are the cards you have been dealt,and you have to play them the best way you can.
I went through a similar stage as you,when Slim had pneumonia and caused so much damage to his lungs, so so angry,I had to resought to a little white tablet just to keep my emotions in check,worth thinking about. Good luck Eve
In my thoughts Mareen,
Love Eve
Hi Scott
Wi Fi about £15 for a month in Kings good reception,Am I right in saying its your second SCT????
Wishing you the best,Slim and I Found Kings very efficient although food yak,but could not give him enough ice cream and milk,plus lots of pots,staff very nice..Eve
Hi Fiona
Well I must say I am sure you are much prettier than your profile picture:-)
Fiona my story is old now 2 1/2 years, drugs change trials change,so it's time for new people to help those coming on to the forum. Everyone has to have some normality in there lives and this will keep a lot of people going .
Slim and I have left normality behind,I needed to find other people who realise they have joined another roller coaster,and I understand sometimes people do not accept it until the end.So I would not like to force those people in to reality.
I have received private e mails,and say thank you for all your explanations,
As your husband is good,do not go looking at the future,live for today,if you worry about tomorrow you will not enjoy today. Your husband may have years and years of remission, Slim is just unfortunate . Love Eve
Hi Dai
You are a lovely man, just enjoy,fill your heart with pride.Love Eve and the better half Slim.8-) 🙂 😀
Hi Barbara
If its any consolation ,all carers feel the same,it's a very hard path,when things are not going smoothly.
I suppose in some ways I am lucky living with the patient,I dread to think about some one living alone,coping when things get bad.it must be like living two lives,you have your own life and also trying your best to look after your brother,a task and a half.
I would learn as much as you possible can,as when things go wrong,if you have a knowledge of Myeloma plus side effects,it makes life much easier,less panic ,knowledge is the key. Eve
