Hi Dai
I will see what I can do,I know boffins deal with the fact side of the treatment,understandable so ,but first and foremost I am a carer to some one who is very ill and is going to pass away,either from Myeloma or a related illness,so as such I tend to be emotional about it.So you Dai are going to have to bear with me.I do write as I think,as you well know,so hang in there and sought the good bits out.:-P
1. I would like information to come directly to patient his results his body not wait for a consultant to decide what you should be told.
2. As you say treatment should be directed personally,not same treatment for all patient,how can they decide a patient treatment,when every one knows Cancer caught early has a better chance of remission.
3. On a personal point of view I feel, we were told Slim has Myeloma,the rest I have had to find out for myself,although this is to do with the hospital,I would not have been in this position,if all results that have to come from out side of hospital,were sent to us,It is fine for them to say any questions,but if you do not know what to ask!!!!
4. I think patients fall into 3 sections
The ones who give up before they have started
The ones who go in to treatment with doctors know best.
The ones who want to know everything and do not see doctors as knowing everything
5. We all know just from this forum,how hospitals differ in there approach,to treatment,decided by the consultant and team,the problem is someone forgot to include the patient,On a personal level I get fed up asking something and not getting the answer explained why that decision has been made.So most thing are third hand and the interpretation is in it self not explained enough to the patient,if patients who wanted all the paper work were given it,it would make life a lot easier for staff and patient.
6. Dai you are aware of our position,we have now for the last 12 weeks been in limbo,as kappa light chains no longer show true readings,today Slim had bone marrow taken,it will be at least another 10 days for results,that will be 14 weeks of treatment without knowing if Velcade is working,I am told there is nothing they can do about it,sorry I do not buy that,I do not know what can be done to give us some peace of mind,Sharon has PET scan which shows any activity,told its not suitable for Slim,so how can this treatment be so different,but chemo is dictated by cost.or trials.
7 I would like to talk about trials and I am aware,that you Dai are not on any.
The Myeloma x1 trials are more or less set in stone concerning actual chemo,they do have other restrictions,but doctors are allowed to low doses,but they do not automatically give you blood thinning drugs,every drug has a special day to take them,no one has ever explained why,the answer always seem to be you are on the trial and it must be followed.
I am starting to ramble a bit Dai so I am going to stop.
May be someone else can give you more input,I do realise that what we offer to the professionals is only a small insight,My main concern is lack of information
But I would say to them would you walk a mile in Slim shoes,it sought of puts everything in to perspective to me.
I will sit down tomorrow and put my thinking cap on.Love Eve
Hi Only me
Funny name to have LOL.:-)
Just to say sorry your mums having a bad time of it,cannot help you,but my best wishers go to you and your mum,Eve
Hi Sarah
Bridget has just given you some very sound advice,so my advice to you is listen to what has been said.Apart from that welcome to your journey as a carer,ask away about anything you are not sure about,even if we cannot help you,you will have the support of everyone on this site.
Hi Bridget good to see you are posting again. Eve
Hi Everyone
First to Helen,make sure you do that trip.wonderful country,we spent three months there mainly to see family but did spend 3 weeks travelling in motorhome,from Christchurch to Auckland,one thing MM makes you realise is never put of doing things you want to do.:-)
Caro,hi have a friend in Hamilton,scouser who moved there years ago,its a very small world,and a wonderful one you just have to make the most of it,your daughter out there must be worried sick,I know my daughter found it hard to cope being away from family,thought i was hiding things from her because Slim was so ill.found Skype helps able to see and talk to her all the time,some times we manage a conference call with my other two daughters,technology is wonderful big learning curve,just like Myeloma.:-P LOL.
Anyway social side over lets talk about MM.
I as a carer found it easier to keep a big board with date and tablet days on it,some people use a special calander I think you get it from this site ring Ellen she can tell you.
Do please listen to your body,and if you feel ill please phone that help line I cannot express how important it is.!!!
Slim is9 months down the line had no remission,had a few blips on the journey,which you learn from very fast,they are use to me at the hospital now if i think he is ill and they do not take it on board.I stand my ground,so important you know your body best.
The only thing I can say with hind sight, at the begining of the month you are given your tablets,then you do not see consultant for 2 or 3 months!!.you are delt with in the Cancer unit,bloods every cycle,zometa and tablets,see cancer nurses and may be a Myeloma trial team member,They ask how you are,check list ticked,but you as a person do not know how you should feel taking Chemo,so you put things down to chemo,they do not tell you that large doses of steroids mask infections!!!!!!,so keep an eye on your blood pressure,if it starts going low that to me is the first marker that something is going wrong.It took me a long time to make that first call,did not want to be a bother,also never called an ambulance in my life,when I made that call,Slim was just confused and a bit unsteady,had been turned away from A&E on Easter Saturday,by Easter Monday,I dialled 999.Spent 9 days in ITU and 11 days on ward,biggest lesson of my life.
He is now alive and kicking and doing very well,putting on weight,and now waiting to see if Velcade is working,I hope you sail through this journey as lots of people do,have treatment get remission and you go to nz,but to me forearmed is forewarned.
The sun is out and i am off to take the dog for a long walk,Good Luck on your journey Eve
Hi Glyn
Just to say welcome from one carer to another,hubby seems to be doing very well,and long may it continue.
Good to hear good news and know there are people out there that are getting such good results,it does give the rest of us,such a boost.:-)
Hope you keep posting and let us know how it goes.Eve
Hi Gina
So Sorry to hear your news about your mum,no matter if you were expecting it,it still hits you,I do know how hard it must be for you and your sister,I hope you get your mum home soon.
Try to be strong for your mum she may have a reasonable time left,you and your sister and your mum can make the best of the coming months.
Love Eve
Hi Everyone
Sorry not in a position to comment,but I do know that in boots they do a solution called polytar ,not sure if it,s correct spelling cost £4 it is very good for people who have itchy skin,at £4 might be worth a try. Eve
Hi
I play scrabble with my daughters,the one in nz is whipping me some thing awful at the moment,we do it over a period of days,
how about ARRANGEMENT
I leave you with ENT
Love Eve:-)
Hi Gina.
So sorry to hear about your mum,you and your sister must be very worried,I can understand you not telling your mum until you know if its new cancer.
It does not sound good if its hit main organs,try to keep positive there is so much they can do these days,have they tested for this before,because she has been having lung problems for awhile.?
Lets hope there is treatment available,there is so much they can do these days,will be thinking of you and your sister and mum.Love Eve
Hi John
Good news for you both,Our hospital is still talking about it,do not know if Slim will have it as on MYeloma trials,have to wait and see.:-P
We asked about it sometime ago,its going to be a tummy job,we asked could it be done like clexane,so we could self administer no such luck.
Glad to know you are both fine,look forward to hearing your next episode.
Eve and Slim
Hi Sarah and Jenny
Just popped in to say welcome to the club.As you can see there are lots of people and carers who are ahead of you on this journey.
My advice to you is take it a day at a time,it,s a long journey both of you are on as patient and carer,so my advice to you both,is it,s a journey were some people do well and get of the bus early,or it,s like my husband and myself still waiting to see if he gets remission.
Sarah you do not say were you are have you looked at forum to see the nearest help group,our,s is 65 miles away ,so no support that way,thats why I rely on this site so much,for information,help,and to be able to express my fears or joyful moments,and I rely on Bridget Tom,david Min and many others to keep me from loosing the plot,they can often put things into perspective and make you laugh.
Good luck on your journey Eve
Hi Jim
Just to say welcome.
Myeloma X1
Husband started trials February this year,allocated CTD side,did 6 cycles with a small blip in between had septic pneumonia 22 days in hospital not very nice,with hindsight,should have been on Clexany,from day one,this is not automatic,but would have saved a lot of problems with blood clots.
ON trails bone marrow is taken more often,good thing in our case as after 6 cycle found Myeloma had increased in marrow.
Ctd stopped and on to 2nd treatment which is Velcade now on end of 4 cycle expect to do 8 cycles,bone marrow to be taken next week to see if Velcade has worked,problem being Myeloma now longer shows in bloods or urine,a little unusual,but everyone is different,very much an individual disease.
Slim has Bence Jones kappa lightchain Myeloma.
9 months later,with more knowledge and a little hindsight,would he still have taken that route,as Bridget says treatment is still there without trials,specially in larger hospitals????
Some people who are not on trials ,have to wait to see if there hospital,will agree also cost is involved,!!
His answer would be YES although I do think he might have responded better if he had got CRD side,again it is easy to say that,we will never know if this is the case until end of trials.
Also you have to take in consideration,how far your Myeloma has advanced,the early it,s found,the fitter you are and your attitude of mind all helps,as Kay says its not a walk in the park.
There are many people on here who have the treatment and sail through it,have sct and go on for years you just have to look at some history on different sections on Myloma uk.
This forum can help you ,answer your questions from a patients point of view,give you support when you need it,and in general become your cyber friends.
Good luck on your journey.Eve
Hi Gilly
Nothing surprises me these days,they have got in touch with there legal side before they approached you,I take it this stemmed from a written warning and a consultation,Well to put it bluntly they want you out,
I do not know your circumstances,or how much you need to live,but you can either fight them,but do you need all the hassle,they will inflict.
My advice is start a dairy keeping notes of dates off remarks made,by anyone and make sure you have a good union rep,if you can keep a record and report anything that is said to you to a rep,they tend not to like to be seen as to blame,if it does go to further,its not much you will get out of them,
Health wise this is the last thing you need,I wish I could help more.Eve
Hi Christine
Cannot help you much on this one,except to say,Velcade did create a feeling of anxiety and general accident prone moments,not sure if it was Velcade,but put it down to doing to much and not drinking enough fluids.
Your dad must be feeling pretty bored not being able to do much,and being so young and active,surprised you cannot get him on here,might help with his general well being,make him realise there is light at the end of the tunnel.
|Best wishers Eve
Hi Mal & Bruce
When I first read your posting,I thought,sct with kidney failure,that takes a very brave man,and you are just showing us it can be done.
I am so glad it,s going so well for you and wish you a speedy recovery and long remission:-)
Hope you are both home soon drinking a glass of bubbly to celebrate life.
Best wishes Eve&Slim
PS And playing your music of course.
