Good for your Dai
Life is for the living and its your duty to live it to the best of your ability,,even with one leg bigger than the other.:-P
Janet must be a very brave lady letting you drive,Slims on the Dex and once more has been band!!:-)I love driving LOL don,t tell Slim any excuse to get behind the wheel.
Tomorrow is another day.Eve
Hi Dai
At least you have explained to me why I am always laughing,Never looked up the Wilki for meaning of Gallows Humour just thought it was me,always have a weird sense humour,some times i find myself laughing at the weirdest things, I just thought it was the scouser in me,plus the pills [magic].As long as I am laughing and not crying,that,s what is important to me.
Friends will come and go,on this site,that,s what life is about,its just sad fore the people they leave behind,but life does go on,you can either sit and mourn or pick yourself up and think,we have a duty of care to the living,and open the door to a different life,and slowly close the door behind you.
I hope I can be true to my beliefs. love Eve
Hi Min
Just here to send you good wishers,Eve
Hi Bridget
Instincts are a wonderful thing,and we all need to listen to them,as you say you know your body best,better to deal with it,!!!.
Min i thought you have been too quiet,I know what you mean about so much bad news,but that,s what people are here for to help to laugh and cry with you,you yourself made me realise,there is someone out there ahead of you who is going through your pain or your joy,and it does help.
Sarah,so so glad to see your post,even if it,s a quick peek.
love to you all Eve
Hi Ted,
No you are not the only man on here,if you look at the average person to have this diseases its,men of black race age 70 years,???? I know but thats what facts and figures say.:-P
I think,we see more younger people on this site,because the average age on people who use computers are younger.
We have 2 Davids and a smiley Tom,plus are welsh cousins,Scott and lots more,Plenty in the 50 group,the join that,as no strong language allowed hear,although every one feels like using it some times,Some only look in and comment when something comes up that is of interest to them,but women chatter more LOL.
No matter how good family is,unless you are living with mm or a carer of an mm patient,it,s hard to understand thats why this site is very helpful
the library is excellent,and you can keep up with new publications about mm
and you make cyber friends.best wishers from a friend Eve
Hi Liz
sorry you have had to join this site,but you should find help here.
I think the section that might be more help would be related conditions,
I have no knowledge of anybody with this condition,but i do know mm attacks the soft tissue sometimes.
You could also try the myeloma nurse on this site,phone or send e mail,she helped me with some questions that I needed answering.
I know this is a shock for you and your family,and you need some answers,but thing will get better,and you will start learning about it very fast.we have all been there before you,as a patient or carer.
Best Wishers Eve
PS her name is Ellan
Hi Sally
I am a carer for my husband,If I am honest as much as my husband use to be a very capable man,this mm has taken an awful lot from him,and he would be the first to admit ,he does not know what he would have done without me,saying that my husband had septic pneumonia and ended up 22 days in hospital,he has always been a fit man,ex royal marine.lost 4 stone and 5inches in height.66 years of age.Bone tumour and lesions.!!!
Some people sail through this have no problems,go on to sct and have good remission and go back to work.no bone problems,when you have your fathers results,you should know ,roughly what to expect!!!!
Lots of people manage living on there own,but having a person with mental health issues,who is not sympathetic,I think needs to be at least assessed.
My mother in law was for many years,needing help,thought we were plotting against her,rude abusive,would not be helped,you just end up hating them in the end,finally lost the plot,admitted to MHU for assessment,found out we could have had her sectioned earlier,came under the court of protection,and we moved her into a home.was told the condition started in her sixties miner strokes,damaging brain.took 15 years.
No pearls of wisdom,but I know with hindsights,we would never go through that again.
I hope you can get your dad to talk to her doctor,he is the one to help you.
kind regards Eve
Hi Everybody
Min the problem with dex is we do not have it to take,in the morning,trial day one take vcd,will not give us dex until blood results come back .so 9 for bloods 1 oclock for injection then,rest of meds sent for got out at 3-30 in afternoon.Stupid i know,were did commen sence go!!!!!!
Bridget I asked about picc line after reading up,and as they have had problems finding veins,and realising if he has problems with fluids his veins will be none existences,the nurse made the comment [,she did not think it was necessary ],so Slim has chosen not to have it done,I disagree completely,this was the first time she had seen him,Slim has chosen to take her advice,but if in the process of this treatment if they have any problems with his veins,I will remind her about that conversation!!!
Dai I do not know what strength Velcade he is on,as all of this was being done as nurse was telling him,he did not need picc line,we go again Friday for bloods and injection,thank god we do not have to wait for tablets,the marathon hospital job will just be at the start of each cycle followed by a dex night,as he has to take them same day.basically it means vcd does not start till one o clock!!! also with cyclophoshamide,which he would normally take at 7 in morning because no food 3 hrs before and no food only water 1 hr after has to be taken on first day,so food and fluid except water has to be curtailed for 4 hours once the tablets are given to us.
does that make sense Dai!!!!:-S
Spoke to nurses about it,and they agreed,but said this is trials and they have to be followed,8-) :'-(
Jo is this just an injection without the saline drip ??
Gina Slims getting heavy doses of proteins,steak steak and steak,feeding him up before he looses his taste for food.:-)
I am getting a swear box,save some money,how are you getting on with your sexy sock, LOL my mind boggles when I think about it,I can remember Slims when he had the hip replacement,anyone who heard us must have thought rude things eg.go on get it in there,push push it in,we would end up laughing so much,we could not get them on,and Slims always had skinny legs.
Love Eve
Hi Ted
Never forget you are 80 years YOUNG,happy birthday,A life is a Life and you make sure you enjoy every minute of it.:-)
As Bridget say Gp come across Myeloma may be once in there life time,I changed my gp to another one in the practice who had a little bit more knowledge and was willing to learn more about it!!.
Please,do not feel,a fraud I can only imagine every symptom you have,must make you think its starting!!!,peace of mind is what you need.:-)
Slim has flu injection every year and had a one off pneumonia jab,but there are lots of different types of pneumonia so will not offer you protection from them all.
Also we carry a file with us now ,with all results of any test he has had from.bloods urine results of mri and cats scans,you just have to ask for them,from your consultant,bloods when you have them taken,or specialist nurse.your body your results!!!
It might help to get info leaflet from this site and take it into your gp,if my own gp had been more aware of mm my husband would have been diagnosed far early than he was,
so keep posting Ted and all these lovely people on this site will try to help you as much as they can. best wishers Eve
Thanks Everyone for your replies
We got there at 12.30 for a one oclock appointment.As the bloods were taken previous day ,Saline drip first injection into it then more Saline sounds easy.left hospital at 3.30.Slim had to take tablets on same day so dex taken on the way home,he has been up most of the night and this morning more dex.so full of energy:-).I look like death warmed up:-P disturbed me every two minutes!!!!Have to keep reminding him the dex is working great!!:-P
Spoke to nurse about picc line who then in turn told Slim,she did not think he needed it,but it was his body so up to him!!! guess what,he is not having it,!!!Last time we went heat pad 4 tries 2 nurses before line went in,came out saying{by god that hurt}typical man did not tell them,so no picc line.
What all this means is every cycle we will go in for 9 for bloods come back at 1 o,clock for injection,then wait for drugs ,take dex as soon as possible and be full of energy,( think i might have a word with boffin Craig) this is were we need some input!!!!
Dai as 8 cycles is the order of the day i think i will have lots of questions you will be able to answer,but for now,just watching for side effects,at the moment its just dex,and picc line that is causing heated discussions 😛
Thanks everyone for your kind support Eve
Hi Keith
glad to hear the good news,so nice to hear someone is doing well,The sea air is wonderful,I do not think I could live far from the sea its in the blood,i actually need to be near the sea.
best Wishers eve
Hi Gaye
I came on this site the end of February just as you went off,I saw your posting on trying new drugs ,about getting approval ,and your problems with pain control,I went back over your old posting to try to learn from your experience and I did,thank you for helping new people on this site.I like many others wondered what had happened to you,thank you for posting again.
I wish you a good journey and enjoyment of all your days you have,my thoughts will be with you.Thank you again.Eve
Hi Min
Glad to see you have posted at last was worrying,as all your posting was about other people and not how Peter and you were.:-)I hope it all works out for you on Monday,and Peter starts to feel better,now his back has been fixed
We need some good news on this site,so keeping fingers crossed that Peter is the turning point!!!,will be thinking about you come Monday,best wishers Eve
Hi Craig
The Problem is Craig,you need someone who has been through the whole system of varies drugs,with all the problems that go with it,these people do not plan that far a head.As you may understand they do not know what will be happening by November so no one can offer you a guarantee!!!!.Even carers like Min who are very well informed,have there hands full being 24 hour carers.Give people time to think about this,someone will step up,as you have hit on to something very important to us.
It is a sad time at the moment,we have lost,and are loosing people,and no good news is coming through,so keep posting and then it will stay in the forefront of the topic.
In the mean time i will bully Dai,cannot bully Min (police).regards Eve
Hi Susannah
I have been following you post,but as you are head of my husband ,have not posted,posting now just to say even though you don,t know me,I am wishing you all the best and hope you have Michael home soon.Eve
