Hi Gill
LOL needed that,eve
Hi Perkymite
At least you have a good chance of not being infertile LOL,Perkymite what a lovely nam on wards and upwards 😛
hello Mark
My partner has tumour on spine plus damage to spine.Stared straight away after test on Myeloma X1 Trials.He was given ctd side for test.Intensive pathway decided now on 36 day,has good days and bad just go with the flow.
Mark you will be having a big learning curve with this illness.We asked short medium or long term and was told loooking at 7years may be ten with new drugs.We have learnt that it all depends on how the person responds to different drugs.I also think if you bl…y minded and positive it goes along way.
Go in to library section on this site the drugs are all there the hospital will give you lots of reading materiel your dad might not feel like reading it,but you or your mum can start getting informed it helps,at first it is hard to take in but it will get easier to read medical terms and understand them.
good luck.eve
HI Gill
Your posting has just burst the dam that has been cracking for a long time.eve
Hi Jean
Yes Slim had been ill for more than 6 months,In a lot of pain,wanting to be sick,not eating,doctor put it down to tablets.Slims problem is he has a high pain threshold and an attitude a little bit of pain never hurt anybody.
I came across as a screaming banshie with attitude,not good when you know something is seriously wrong and doctor will not listen.no test done!!!!!
Saw another dr.in practice,who straight away said there was a condition were calcium leaves bones and gets into bloodstream.blood test,and hospital appointment took 2 weeks.Saw consultant was admitted with in 10 minutes with hypercalcuimea and akf.all test done over weekend.myeloma x1 trial straight away on ctd intensive pathway.nearly finished 2 cycle 21days in cycle on day 33.Feel guilty that I did not do things different,feel mad at Slim for not demanding test,but he did not realise how ill he was it had just become normal to feel so ill.
At the moment i am not in a good place, but g&t comes in handy.lol
have you looked at the under 50 site,they think oldies do not use fowl language.
sugar instead of s..t
basket instead of b…..d
fasting instead of f……
I think we should have a special one were we can swear.lol
Hi Jean
I know its hard,but if Frank will not make his feelings known to doctor,you have to accept it is his life his choice.He wants to go on holiday!!If bone damage is there 14 days will not make any difference,If he starts wanting to be sick,then calcium is getting into blood stream its called hypercalciumer ,spelling might not be right but worth looking up.this leads to akd.takes time to get to this stage.My partner,has lesions,on shoulder blades and skull plus spinal damage.I have copy of mri scan and letter to my doctor,All indications say to me stage 3,told they do not do stages anymore???
Because I live with my partner,I had him write a letter to access his medical records,It keeps me informed and helps with questions to ask, knowledge is the key.
on a lighter note,g&t work wonders I have a saying no matter what time of day it is when things get to much,my attitude is its six oclock somewere.
It is hard Jean,my thoughts are with you.eve
Hi meeuu
i needed that joke at five this morning still lol,have you any more ?
Hi Jean
Frank is so like Slim!!!!!,If Slim new about me talking on this web site he would,go off on one.He was a commando marine for 22 years,use to being obeyed the only good thing about him being so stubborn is it just might be the one thing that helps him on this journey.He is a fighter with the believe he can do it and in my own way admire him for it although many times I think he is wrong.
My way of coping is (his body his choice) ,although you might notice it is 4 oclock in the morning I am wide awake,he is sleeping like a baby!!!
He has always maintained in life, if you cannot change something why worry about it and it works for him.
Frank will end up not telling you when he has pains,if he think your are fussing,the calmer they are about it,the more you will come over as a fussing wife,
Slim has just woken up,I left him nice and warm in bed and 5 minutes ago you would think he has just stepped out of a freezer he is shaking so much ,I have tucked him up in bed and waiting to fill hot water bottles,must go now.regards to all.
Hi Jean
Is a holiday going to make any difference to treatment?
I have one of those men,who would not listen to me,So he has stage three MM. he has all ways been like this,you are not going to change him End of the day his body his choice.
You must make your choice,do you go to Spain,and have a holiday may be the last for sometime or phone hospital yourself.?
Sorry to sound harsh,but I have lots of regrets,that I did not make him sought the prblem out,instead I let him bury his head in the sand,because it caused so many rows,and our doctor t the surgery,thought I was fussing!!!!!
My blood pressure rises,so try not to have confrontation with Slim because he is so stubborn I just remind myself his body his choice,then I make my choice and will not changed my mind,not easy but it seems to work.
I hope this helps you make a choice,the sad thing about it,he is a lovely person most of the time,and will often tell me days later that I was right!!! let us know how you got on.Iwish you luck eve
HI Jean
I am a new be to this site and also to mm,my partner is on his 29 day of cdt.He has had pain in his right side for a long time,he originally thought he had broken ribs.When it was first diagnosed the damage to the large bones were in shoulder blades and skull plus spine,these showed on skeleton exray and mri scan. ct scan has not been done.Strong pain relieve has worked,but rib pain does keep coming back,on phoning hospital was told to up pain relieve.
I think the damage to bones is a secondary problem,and the main concern is getting the blood under control.
I am like you Jean every twinge I am watching,I know it gets on his nerves and he does have a bit of a dexa attitude through the cycle, he cannot see how ill he looks I spend my time telling him how well he is doing. I think you have to let him decide on the pain,but make sure you mention it on next visit to hospital. I hope this helps you let us know how you get on. eve:-S
Hi
I travel every year in motor home making are way through France then Spain and on to Portugal 'we have needed a doctor once in France and a dentist no problems just paid are 20euro,s and then paid for tablets.In Spain you can take your repeat prescription in to chemist and you can get it over counter we do this all the time as doctor,s are loath to give you more than 2 months.In Portugal you have to see doctor,but a friend had cancer his doctor gave him the drugs he needed,once a week he needed an injection so he found a local clinic they have them in the smaller places show your passport or EMC and they treat you for a few euro,s.
If you fall ill in Spain Benidorm has one of the best hospitals,they are use to treating ex pats.
My partner and I are over 60 so that does make a difference I think there is a border agreement.
At the moment I am looking at bank,s they seem to offer a good deal and cover for existing conditions if you have a bank account were you pay a monthly fee.
France is not to far to get home as we live 9miles from Dover and I can drive van.The only thing at the moment is he is on the MYELOMA X1 TRIAL.They want there blood every three weeks,plus 24 hours of urine .So only going away for 2 weeks at a time.
Hi Gaye
I know i am fairly new on here and my partner Slim is only on his 23 day of ctd,I do not understand why everone seems to be on different pain relieve.I am concerned how much Slim takes although hospital is very pleased with progress he was taken off tramadol put on 10 mil of morphine a day plus paracetamol 500.This controls the pain to average,its the steriods that give him good quality of movement free from pain.
His thalidomide has been upped to 4 tablets of 50mg from 2.We know he is in the third stage although the hospital tells us there are no stages!!!!!.I must admit to being [ are you telling the truth] although I would not voice my fears to Slim,I try to be positive,and just do my best to keep him in a good frame of mind,Is it me that has a glass half empty eve
Hi Tracy
My partner Slim is on 21 day of ctd.He was on B12 vitamins for awhile.I cannot help with gluten intolerance.Slim was very healthy before all this.I think when you are first told about myeloma apart from the shock you start looking for reasons.Everbody will tell you this no one seems to know why or where it comes from,we are all different and the treatment reacts different for ever one on it.This is why this site helps.
It might be worth going into related illnesses you might find answers.
Good luck with your seach and keep us informed how you get on with gluten free,at the moment I just want Slim to eat as he lost 3 stone in weight and need to build him up.his taste buds are not working he now hates red wine!!!lol
eve
hi Nigel
I agree with you it should be easy to arrange medication between Europe,we know from friends in Holland If they need treatment and it is easier to go to Belgium its no problem.We tried it when Slim needed a hip replacement,2 years wait here,we offered to go to Abbyville in France would have cost NHS 5thousand was refused,they paid 11 thousand for him to have it done private because there was a policy the waiting list down.
I know cancer patients who have taken there medication with them to Portugal and they just find a clinic who are prepared to treat them,works under the health scheme
The problem with France is mainly cost if treatment is needed,the forms for claiming everything back,and the cost of medicines.In Spain it is a lot easier.
You have to have a good doctor most of them do not want to get involved in fighting the grey men in grey suits.
This is why insurance might be the way forward,If I can find one that is cost wise reasonable.Did someone say we are Europeans now !!!!! It just seems to me its a rip off.
hi Gill
Thanks for information,will look it up.We travel in a motorhome to France,Spain Portugel,have done all of Europe plus Morocco.This mm has put a stop on are travels for now.We are hoping once Slim gets use to his chemo to travel to France although on treatment,will have to come back every month because of Myeloma Trials.
It is just as easy to travel to France for us,and treatment in France ,we have found to be good for other illnesses.As Slim is in his first round of chemo I was wondering has anybody else managed a holiday,We have At least another three rounds of chemo to go.
It is not knowing how chemo will effect Slim that is more the problem,at the moment no side effects at all,Insurance would give me peace of mind,The driving does not worry me and I know I could get back in 24 hours from France.
Anyway thanks again for info,will look into it.Although weather has been nice,the wind blowers you away here,have never stayed in England for the winter for years,I need some sunshine. regards eve
