[eveParticipant]

Hi Thanks kwilson for the advice on insurance I will look for that.

Hope everybody is enjoying this lovely weather or is it just south of the thames that has it?

[eveParticipant]

Hi Ruth

My partner is on his 10 day of chemo,I can only tell you he should not be in any pain,if you do not ring the hospital to find out why,go to your own doctor,My partner is on very strong pain medication and is in pain when he does to much.

Normal exrays show up lesions on large bones mri scan for small bones eg spine;,no matter what the damage is he should have good pain relief the hospital should be your first call.He does not have to be in pain;

It is very hard to take in everything that is happening to begin with.but do not hesitate to contact the the hospital,My partner had bad pains in his side and was told to up the pain relief and it worked 5minutes on phone thats all it took.regard eve

[eveParticipant]

hi everbody

I have decided to come out in the open;I have kept my partner low key because of family circumstances.

I am eve aged 62 originally from Liverpool ,have lived in Deal KENT FOR 40 Years.My partner who is 66 was diagnosed February the 11 this year.He is known as Slim only his mother called him by his birth name.

We have been so lucky,We both retired 10 years ago and have just spent 8 years travelling in our moterhome,before that We did it part time for 10 years closing guesthouse down for winter and travelling.Last two years have been travelling a few months at a time.We are both so grateful we did because if Slim had worked until 65,then there would have been so many regrets.

One of are reasons for doing this is we were watching ex marines coming down with illnesses we know of at least 2 others that have rare form of blood cancers it has made us wonder if any of this is related.

One good thing that has come out of all this,in NOvember we were in France and Slim was so ill we had to come home,I had no choice but to drive a large 8 metre van,and now i know i can do it.I keep telling Slim he is more likely to die of a heart attack with my driving than mm!!!!!!

When I learn to post a picture I will,this is new to me as well,having big learning curves lately,so some good things come out of bad things.I would not have found you lot would I ? if I could give you all a hug I would eve

[eveParticipant]

HI jo

Interested about going on holiday,how do you manage insurance wise? We have been told once my partner gets use to drugs we can go off in motorhome,but he is on morphine ,and only 10 days supplied at a time,so France looks out although for us France is nearer than most counties,and I am happy to drive in France.The customs might have somthing to say about controlled drugs in van. regard eve

[eveParticipant]

hello tom

It is a bit complicated with his daughter,in February she knew he fractures in his back,Then he was told he has mm and decided he would tell her h/term when she said she would travel up.She did not come,and no phone calls since,

My own daughters know and are there for both of us.I feel she should be told but will not go against my partners wishers.I can see his point of view[ no phone calls not interested]The contact only seems there when she needs something.If she rang up I would tell her,but not my place to contact her.

Just feel if we are storing up extra problems,that we do not need.

Any way enough of this,I just want to say tom how much you cheer me up, We are only in the 7day of treatment,and pills have reduced to 15 to day then tomorrow about sevenwithout doctors pills,dexi starts again in four days.

regards to your all and thank you for just being there

[eveParticipant]

Hi jon
You are going to have down days;I do and its my partner who has mm.He has just finished dexa starts again Friday.Iknow he is a bit down right now but being a man keeps it all in.It would be lovely to have a magic wand and turn the clock back,Try to keep chin up regards eve

[eveParticipant]

hi hmason

Lot older than you but based in Deal Kent,Try 50 age group a lot out there,My partner is in 6 th day of treatment on myeloma X1 trials he got ctd side.He comes under the same consultant but not seen the big man'Worth trawling site as I found it very helpful and reassuring there are people out there who have been on this journey a long time.I wish you good luck on your journey

regards eve

[eveParticipant]

hi everbody

I would just like to tell you all how helpful I find this site,I never mention my partners name because his daughter does not know!! long story.

It is very hard sometimes I understand his feelings but as a very open person it is hard,he is just the opposite of me.If your can not do anything about it why worry about it!!!!

I feel very selfish we travel a lot in a motorhome we came back from france because he was so ill,and we should have been planning nz to see a daughter,this is so hard because are whole way of life has changed so much,I cannot wait for warm weather to come sorry to ply you with my troubles

[eveParticipant]

hi jonny

Its my partner who has mm,I have found this site very helpful it has certainly calmed my fears.my partner is in his 5th day on myeloma x1 trials he got ctd branch.I can only say he is better than he has been for many months; Jets story is so similar to my partners.

I can only advise you to get things in place in advance,eg blue badge,wheelchair, they take sometime to organise and if you wait until you need it,it will not be there.Seem drastic but it does make a difference to how much you can do.We try to get out everyday

good luck on your journey,and tell your wife to watch out for dexi moods;

regards eve

[eveParticipant]

nicki
I have only just joined this site,and to hear there is light at the end of the tunnel is good news.We are just starting are journey ,one we did not expect to be on.It gives me hope for the future,one thing I have learned from this site is to be positive,I thank you all for that regards eve

[eveParticipant]

hy everbody

When does this kick in my partner is only 3 days into dex,this morning he went off in a mood,because i did not want him changing bedroom round,complaining I should have had fitted wardrobes by now,

Aa well as coping with illness,I have had kitchen fitted,next bathroom ,double glazing planning consent to sought out,and when i told him it might be dex kicking in,that set the cat among the pigeons.my bedroom looks awful boxs stored behind wardrobes,

Letting this one ride just closing my eyes when I go in bedroom

[eveParticipant]

my partners the same,stabbing pain right side,On oramorph 10mg a day plus paracetamolbetween oramorph.As he feels better he is doing more.

He has only just started first round of chemo,and have been told there will be no pain!!!!!!! he is a lot better than he has been for months.the pain at the moment seems under control. it is early days,we just make the most of every day sun shining time to take the dog for a walk. eve

[eveParticipant]

I can only tell you when my partner had his problems it showed up on ordinary x-rays.the skull and shoulder blades,the reason they do mri scann on spine is because there are so many little bones its hard to see on ordinary x rays.

my partner was admitted within 10 min of first appointment.48 hours later he was like a new man,all test were carried out very quickly,You do not have much choice but to put your faith in these doctors.They do not know you and you do not no them,answers come only when right questions are asked.I asked for results of scan and got them,I asked were there lessons any were else told skull and shoulder blades,I do not think they would have told me if i did not ask.you have to be sure you want to know regards eve

[eveParticipant]

To gill and also dave.

Thanks for info on publishers calender I will try that.
The pills are something 10 cyclo 1st 8th 15 day 20 dex run for 4dayd thalid 2 everday,plus sickness pills.that is just from hospital the rest comes from doctor.We have been told that they have put him on the intensive pathway.This is from a man that never took a pill until he was sixty,never even had so much as a headache ,he was walking around with 4 compression fractures.I feel so angry that my doctor did not listen to me 6 months ago.

[eveParticipant]

hi david

Have two boxes for pills,My partner insist on doing his own pills,but there are so many,some days its 45 pills other days as little as25.Plus pills from our own doctor.We have agreed that I check them as sometimes he can be confused becuase of condition.there has to be an easy way of doing this.

I hope someone can tell me of an easier way.At the moment i have two charts

regards eve

[Author]

Posts