I know its hard,21/2 years for us ,they say after a period people become institutionalised day patients,if you look around the waiting area,people just seem to accept,they are going to be there all day8-) ,I have always found the whole procedure very draining. So even after 2 1/2 years we are still rattling the iron bars(let us out:'-( ) .
I do now try to arrange all appointments for 1 day,one week we had 9 appointments at 2 different hospitals altogether a journey of over all of 250 odd miles. Carol the women who does the appointments has taken on board,you would think they could program a computer to attach appointment s to a patients name so they fall on the same day.
The only way to get on a trial is to attend the hospital doing it,some times smaller hospitals work closely with trials,but PAD trials are there,getting on them is the main thing. NICE fund CDT or CDR or CDV.,Slims consultant said that is the choice before any other treatment,and Slim will not qualify for trials,as unable to monitor him.
Velcade worked well for Slim got him to SCT,but Myeloma was back with in 6 months,we got to see our daughter in NZ.your body will get use to the concoction of drugs,so you will be able to know your good days and bad days.love Eve
Hi Garry
It's nice of you to let us know,how things are going:-)
Last time Sue was on here,you could sense she was having a hard time with her leg, it took me awhile to place Sue as there are a few on here,and we tend to stick to first names,but got there in the end.
May I suggest you post in General,as I know Andy and young Tom have both had PAD,but they might not see it,under the heading Get well Susan Mashall,easy to do log in click on general ,go down to bottom right hand side,and start new,post.
It must be very hard on the family at this time,there are so many complications with treatment,my own husband Slim has just had a blood clot removed from a artery in his leg,I know Sue,s is the Myeloma in her leg,which returned,it is bad enough with treatment,without not being mobile.
Please give Sue my best wishers.Love Eve
Hi Carol
When you first start treatment,you just want it to work quickly,but in some people it takes 6 cycles, my husband had 6 cycles only to find it had not worked,so if you keep building yourself up,and you are one of the unfortunate ones you will get depressed,best to work on a day to day bases,the 3 cycle seems to be the hard hitting one,and the hardest for some people.:-S
It is important to drink water,if you do not like it,drink anything,Slim drinks a lot of milk,because his appetite ,is poor.,the injections are very important,they never use to give them along side chemo ,only when a problem had arisen, when Slim was on CTD,I use to take his BP as steroids can hide infection.Slim had septic pneumonia ,and it had well taken hold,but symptoms were few,I just new he was not well,being new to it,I accepted what doctor said,until he was rushed to hospital.
Carol in 6 months time you could be over all this,but everyone will tell you it's doable,plan things,enjoy what you can now,forget the hospital,until its time to go for bloods and treatment. Look after yourself,Love Eve
Hi Andy
Good to see you are managing with treatment,Slimsoff for now,knocked his plats and neuts right down,needed platelets before op.,just so tired,but at least he is sleeping well,(all the time):-S
Is it just a case of carry on until it no longer works or are they looking at giving you just maintenance .????
What strength of rev are you on,or does it go on your blood results before they decide that each month.???
Well for all your treatment the beer goes down well,so there are a few good things,think positive!!! That what I am trying to do,some ways dreading Friday,in other ways want it over and done with,! Better leave you to plan your next holiday:-| Love Eve
Hi Vicky and Colin
Andy is right in saying things can change in a very short space of time,you have to be on the ball,Slim does not even like me changing a light bulb,he is not use to me having to do jobs he would normally do,so its very hard for him,I try to keep on top of things,because if I go out,I come back and find he has been up to something:-P
Vicky if you feel there is something wrong,do not take NO for an answer,!!!
Slim has to have a BMB every 2 months as they cannot monitor it any more,it's only just starting to effect his bloods and that is only showing a slight decline,I pushed for a BMB after 6 months remission,I had support from a trial nurse,consultant eventually agreed and it was back.
Vicky if you get in touch with Mac Millan I believe they have a hotel on the south coast,for people with cancer and have a nurse on site,why not try a few days away first see how you get on.!!!!
Love Eve
Hi Vicky and Pauline
Thank you for your support ,he is home and better already,he is far better in his own home.:-)
Vicky,although Slim has his stubborn side digs his heels in and refuses to budge,he is never visibly depressed,very seldom complains of pain,he has no patients ,but often after awhile,he does apologise ,the man he used to be,had a very dry sense of humour,worked hard and played hard. All those good and bad qualities have got him this far.:-/
It has got to the stage,were people outside plus some friends,are now avoiding us,this is common ,as people just do not know what to say,so that big:-) comes on,and you just say he,s fine. So I am very grateful for all of you,. It's summer I can start wearing sun glasses soon,so will not have to make eye contact8-)
Slim has now got an appointment this Friday for consultant ,next Friday for blood test and Monday for Zometa,so we should have some news then,plus he has a follow up appointment with the vascular clinic,the surgeon was eyeing his other leg up,if it was a leg of lamb.:-0 ,
Glad I make you laugh Vicky,Min use to make me laugh,she even shopped her husband Peter,rang the clinic and told them he was ill,he was like Slim,use to just say he was fine,it just amazes me,,Slim will do and say any thing if it gets him out of hospital,but this is a man who was never ill.
I will let you know how he gets on Love Eve
Hi
Ellen and Maggi are specialist nurses in Myeloma,they are at the end of a phone roughly 9 to 5 Monday to Friday, number is a free number 0800 980 3332 . I have spoken to Ellen ,I have a deafness problem ,and had no problems hearing her,she is in a room on her own,you do not have to worry about getting upset,she will help you with any questions you have,and by phoning you will be explaining yourself better. Do not worry if you do not understand the medical facts,I have lots of problems with pronouncing words:-S
I found it very up lifting to talk to Ellen,I wish I could have made Bournemouth Myeloma Day,as Ellen went,just purely to meet this lovely lady who helped me,just when I needed it,did not solve my problem,but felt she understood were I was coming from,some one who has a gift like that,is a friend in deed,even in cyber land. Love Eve
Hi Annette.
You do get this feeling of being abandoned,I just get the impression of going through the motions,but saying all that how much does your Dad know,because they do get confused,I often think its best for the patient to ask,the one question,how long have I got,
As a carer you just have to go with the flow,as Su said here husband lived with the knowledge,being very frightened ,so may be its better just to accept,life for what it is.
I changed surgery after 40 years went with the doctor who ,I trusted,No regrets,I now have two very good doctors.
Part of the problem Annette is you need to explain a little bit more,I do advice you to ring Ellen or Maggi,who can help you, everyone on here will be here fore you as we'll, My husband came out of hospital yesterday ,clot removed from artery,I surppose I am use to a lot ,as Slim was diagnosed 2 1/2 years ago,so you end up very knowledgeable,
Deep breathing has always helped me,when things start going wrong,I find it helps.!!!you just have to find your own way of dealing with this,it will were you down,and if you cannot cope may be a hospice ,might be the solution .Love Eve
Hi Mavis
It's a man thing I think,he will get there !!!
Look at Dai I automatically thought he had a wheelchair,only to find out he has not,and poor Janet pushing him .
Slim has a wheelchair I bought when he came out of hospital last time,but to heavy and awkward for me to lift,so I went to Halfords and got him a light weight one, not great on rough ground but doable. We live near the sea and the front is very flat no curbs to negotiate,just a battle against the wind!!!
If it makes life easier is my motto.
How was Belgium ,we use to spend time in Bruges ,love the canals and cobbled streets,cute names,plus of course there chocolates and a must is there lovely larger,did you fly or go by boat???.i go to the front every day to walk the dog most days I can see France,I do so miss not travelling as much,but cannot complain,!
Start planning your next trip Mavis.Love Eve
Hi Dai
Good to see you are getting about,have you tried a scooter,you can hire one see if you like ir first!!! I know some one who fixed a board on the back,the same way as in prams,his wife hops on ,problem solved!!!:-)
Slim has had the blood clots on lungs,this one was in his artery rather than the vein in his right leg,watching his foot ice cold going purple!!! When we got to the ward it was full of men with only one leg:-( and some were still scooting off outside to have a cigarette 😛
I do appreciate that a lot of it is the effect of the drugs,also his world has got a lot smaller,and he does not have much control over anything,so small things like doing his own drugs,is a major. Issue,!!! I can also appreciate that the nurses have to keep drugs locked up,plus they do not know how is state of mind is after op.!!!,but all he needs some time is an explanation ,!!!!
These things are not taught in hospitals any more,I think they should class it under dignity,not of the physical body but the mind,the surgeon was excellent,it was basically nursing staff, as for me Dai ,I am just the carer,ah ah ah. Love Eve
Hi Jo
Good to see you are getting a break ,I suppose as long as it,s not raining ,we call it good weather,would really like to see some sunshine were you can sit out in the garden in the evening and enjoy the sunset, I do miss my sunsets and sunrises not the same in this country.8-)
Jo with the buggy I have just got to get him in it!!!!!:-P attitude with in the mind. I know once he tries it,and knows he can scoot of with the dog doing catch up,he will enjoy it, to him its another nail in the coffin.So waiting until Friday hiring one for Sat and Sunday.;-)
Ex Marines,stubborn. As hell.cannot live with them,cannot live without them!!!!,any one married to a service man,will tell you the same,I think they brain wash them,mental attitude leaves a lot to be desired ,but it is a good thing in these circumstances .
Good to know, you are still going strong,you never complain,so I take it your hospital is brilliant !!! Love Eve
Hi Tom
Tried that its likes talking to a brick wall,but there again he is admired for putting up with me!!!! 😛
It's very hard to know we're to draw the line,I know he does not feel save in hospitals, I know he gives them a hard time, I am pleasant ,I do appreciate the problem they have with him. It,s not just a chemo brain,his short term memory is not there and with op,it did not help,minor strokes spring to mind,this brings fear into the equation ,plus trust:-P
The doctor said I could call any time(thought I was fussing) I assured her,they would be phoneing me first,if I could not visit until 2pm. Lol guess what they phoned me!!!:-)
It is very sad to watch someone who has a very strong character being reduced to a shell,all that loveliness fading 🙁
Anyway we wait to see what the experts come up with:-P On ward and Up ward Tom Love Eve
Hi Everyone
Slim is home now,have not spoke to consultant,but CDR is questionable,Slim already had a liver problem,plus kidneys ,his colour left a lot to be desired,but looks a little bit better today.
The doctor at the hospital prescribed paracetamol ,although I told her about his problem, I said not to take Chemo drugs or paracetamol ,the nurse said if the doctor prescribed them he should take them, I was very polite,!!!!,in the end they just accepted it.
Interestingly the vascular surgeon understood my problem,junior doctor prescribed pills!!!,you have to check and double check,were Myeloma is concerned purely on the side effect plus damage done to the body,.
Anyway home and sleeping,would not take a zimmer out of hospital,hiring a buggy for a few days until he feels better,he said don,t bother you can push me in the wheelchair ,ha ha ha, no way,nearly killed me off last time.,so buggy it is. Love Eve
Hi Kim
I am so sorry you are having such a bad time of things,it is heart breaking to watch some one you love go through this decease ,I cannot tell you things are going to get better over night,but you will become more knowledgeable about Myeloma,it is such a big learning curve.:-(
Do not hesitate to ask anything,its worth coming on here just for information,if you need answers straight away ring Ellen or Maggi on the free phone,they are Myeloma trained nurses and can give you instant answers,you own doctor can prescribe drugs so,once you know the problem,you can ring up the doctor.:-0
He is nearly there now,the hard work has been done,it is worth asking questions on here about SCT,you will find lots of tips,young Tom is doing a bit of a blog on here,so well worth reading,but just remember,every one is different.:-P
Good luck,and welcome,this lot will soon cheer you up Love Eve
Hi Tom
Well that,s not to bad,you are going to have to do better than a piece of toast,you never mention family,have you no one to nag you!!!.Eve
