[eveParticipant]

Hi Gina

Sorry about your mum,Its not knowing when to make that call,thats the hardest thing,don,t we get conflicting info,telling you to see your doctor!!!! I have been told that if Slim is ill i have to take him to hospital as they can tell within half an hour if he has an infection,and the first couple of hours are crucial !!!
Anyway I hope your mum is on the mend,and you are finding time for your wedding,My wedding cost me 15 pounds but it was in ITU and I did not have to worry about what to wear LOL,Slim just looked at photos from it,and for some reason he thought he was standing up when we married,LOL I wonder if he can get a divorce on the grounds of not being all there!!!

The wedding will give your mum something to look forward too,I bet she does not tell you how bad she feels because,the last thing she wants to do is worry you and your sister.I know I keep my feelings about Slim under wrap because I have three daughters who have there own lives,and I do not want to worry them,that,s why I am so grateful for this site.
good luck gina ,let us know how your mum gets on Eve

[eveParticipant]

Hi Gill and Stephen
Keeping my fingers crossed for you,it must be a horribly waiting game for you both,plans on hold until you find out,but France beckons.:-)
it is lovely to have some good news,and i hope by the end of this month,you will be over the moon,and making plans.

Slim is in limbo at the moment,with ctd stopped and conflicting information given,Have been called in for Monday !!!.So I know how you feel,as you see Stephen getting better,that,s your only gage you have,I can remember when you said about Stephen going into Sainsbury,s,It was so Funny thats the stage Slims at,looks awful and bites people,s heads off, LOL,but he looks better than when he came out of hospital,!!! if that makes sense.:-)
keep us posted as we need some good news,love Eve

[eveParticipant]

Hi Dai
I hope you had word with the tech who did the scan!!!
Janet this is a message for you if they only give you to pairs of stockings go out and buy more,if you have something the size of a bottles when washed put them on bottles to dry,trick i learn,t,if you want to save money have a swear box handy,because you will be .>:-(.
On a serious note i do think it,s awful that you have had to wait so long,and i do hope your fit enough to enjoy your holiday. love Eve

[eveParticipant]

Hi Craig
Do you see what i mean about Dai,i hope you have signed him up.sorry no pressure Dai!!!!:-P .I think he would be ideal!!!

To Dai,boffins are no different to me and you,i have a good friend who use to be a boffin,and on a social level you would not have known it,
no pressure Dai.Eve

[eveParticipant]

Hi Pam
So sorry about your dad,I know what you mean,when you look at other postings and this mm has no age limits i think the youngest is 29 on this site,also young mums with very young children.:-(
To me a life is a life and does not have age barriers,you still loved your dad and cared for your dad and did not want to see him with any more to cope with.which is understandable .
As a cyber friend,I wish to say,take comfort your dad did not have to go through the chemo,and i hope he died peacefully, i am sorry for your loss Eve

[eveParticipant]

Hi Craig
It is nice to think someone actually wants to know what we think!!!:-P
There are some wonderful people on here ,Like Dai who moved from Wales to Nottingham for better treatment,he is not posting at this moment,which is unusual.Could not get in to your RCP Path email address to check you,thought I would let you know!!!.
I cannot help you,but either way we it would be nice if we could have some in put,from the boffins,!!!!
kind Regards Eve

[eveParticipant]

Hi Helen
It is Tom,On wards and upwards,he has not been on for awhile,so it is either his cucumbers or he is on holiday:-)
i know what you mean though ,he just makes you smile.Eve

[eveParticipant]

Hi everybody
i went through all his work,the arsenic and vitamin C one,impressed me,the patient concerned was given 2 weeks,and he was still alive 6 years later,he summed it up,he was keeping him on top of the grass LOL.
he seems to trying lots of different combinations with different drugs,
Anyway Jo Off to hospital today for bloods,and made appointment to see Myeloma Trials People,to try to make some sense out of last visit.:-S
Must admit to feeling down,it,s Sarah bad news,so sad.
best Wishers Eve

[eveParticipant]

Sarah
What can i say,my heart goes out to you,it does seem so unfair ,you must be heart broken.I thought you might have had a little bit more time together,to adjust to the situation and reflect together on all you have shared,but time ran out.I am so sorry Sarah.
Take comfort,in your grandchildren, life goes on,you will look at them and see the man you loved. Eve

[eveParticipant]

Hi Peter and Scott
Very interesting from Dr Berenson,Trying to find all the information i can,to try to understand the going down sct or not.!!!!
My husband Slim has just finished 6cycle of ctd,it looks if they will not be recommending sct,because of his lungs,when he had septic pneumonia,the cat scan showed mass blood clots plus wedge shape holes.:-P
We will still go to Kings ,but the consultant,just wants to do nothing and wait until it comes back!!!!seems to have gone off Myeloma x1 trials,which says we should be chosen for treatment or no treatment computer decides!!!!
He can come off trials any time.

How did you make this decision Scott,did you have any facts or figures to go on????would be grateful for any help.Best Wishers Eve

[eveParticipant]

Hi Peggy
Do not know how you managed it but you have two post in General with same title one very up beat,other one not so,!!!! just found this one,as i was looking to see how you were managing:-)
I do not know if anybody has mentioned it,but drinking water is so important for your kidneys,if you find it hard drink anything you like,you may find your taste changes and things you would not normally drink,you enjoy.Slims taste on drinks change by the day,from fizzy drinks,juices,warm juices and tomato juice. LOL.I make sure he has tomato juice plus bananas for potassium I cannot help you with your other side effects,but i am sure someone on here will be able to.
I am surprised ss are not more helpful with your circumstances,some times you have to make yourself heard ,can you not get a review?.
Blue badge is a must,there is also financial help out there ,If you do not get any joy,people on here cantell you the best way to go about it,!!:-/

Your energy levels will get better as,the drugs do there job,but it does take a long time,it,s not a quick fix.The tablets to help you not to feel sick,make sure you take them 30min before you eat.

Let us know how you are doing,and I am sure someone can help you with other things.Best wishers Eve.

[eveParticipant]

Hi there Dai
You have a large leg but still keeping your sense of humour.:-P
May I say Dai your a man who is very good with words,so why not use this gift,you must have a local paper!!!!,copies to executives plus,to paper,hate to say it,but works wonders,like a pain in there side.
Other option is to pay privately it should not cost very much you will need a referral from your doctor,trust me I know about these things!!
You need to get this fixed so you have peace of mind for your holiday:-)
There is some dispute between these departments,the NHS are trying to save money,and certain departments,do not have enough staff to maintain the service.( thats my guess ) do not quote me
On a personal level I would pay private,results the same day!!!

My best wishers to Wales you need to be able to walk to enjoy it,b-l-o-o-dy mountains.love Eve

[eveParticipant]

Hi Gill
I know what you mean when you say privileged ,I am not religious ,but i do thinkwe learn so much about life in times like these.
No one wants to go on this journey,but in many ways it is not only a learning curve but it puts life in perspective,and in turn enriches it.

Fifteen years ago i started another journey.My grandsons,again a journey not chosen,So much heart ache for my daughter and family,but what comes out of that journey,love respect and a great deal of understanding,which in turn makes me a better person.
No one want,s to go on this journey,but you can gain so much out of it and until people make this journey no one will understand,that is why all of this is so important.

My best wishers to you all Eve

[eveParticipant]

Hi Sarah
Keeping up with your post just so you know you are never far away from my thoughts. Eve

[eveParticipant]

Well Dai

Whats the verdict !!!!! I know your enjoying the massage so much you have forgotten to tell us.LOL:-) Love Eve

[Author]

Posts