Hello Ron~~ While I appreciate your position, and please believe me, I do, this site is really about helping people to LIVE WITH MYELOMA. Every day that we wake up, we are a survivor and have the opportunity to enjoy this world to the very best of our capacity. I believe that your idea of planning a big holiday is lovely, but having lived with MM for four years now I honestly believe that your brother would benefit from planning something that would be a bit more realistic for him. When you go he will be LIVING with MM, which does mean that he will have signs and symptoms which will limit his previous capacities. When I was first diagnosed in 2002 my family wanted to give me the trip of a lifetime when I became well enough -- spending a month in New Zealand. It was a wonderful goal to have and knowing how pleased this made them I didn't say that I would never be able to do it, UNTIL this Christmas. Then I had to break the news that I just would not be able to handle the travel - by car, train, plane or bus - for that distance, and that sleeping in different beds each night would be unbearable. I am most comfortable in my on home doing things that I enjoy right here, with all the aides and comforts like rails on the walls in the shower and toilet, a small bucket by the toilet in case I become ill in there, all my 'essentials' on a table next to my bed so that everything is no more than an arms reach away. Here at home I look and sound pretty 'normal' which make people forget just how much medication I need to take and how much pain I have when changing position or walking. I can 'hide' much of the pain, be full of sunshine and light and an inspiration to many people who know my history -- which seems to assist them and gives me purpose and direction for my life. Rarely does anyone see me in extreme pain, and the one person who has is my wonderful Bob! Without him I would not be here today -- I'm almost guilty taking all the love he gives me for I could never repay him for everything he has done -- but then, if the roles were reversed I know that I would have done the same, but I honestly don't think that I could have come anywhere near the mark he has set -- he puts in over 200% and NOTHING is a problem or too much trouble -- I am truly blessed in this life. Goodness, I'm rambling again, when I really did start out to say something which might help you and your brother.
Planning such a huge vacation is a fantastic goal, but when one is sick with MM, one knows just what the effort to undertake it will be. No one would want to spoil your goal, but my advice - which I know that you haven't asked for - is that for your brother to really enjoy having a long term goal you first need to set some short term little achieable goals, with an ACHIEVABLE big goal for later on. Small goals can be things like going to 'shows', perhaps having an overnight stay in a nice hotel with a spa in the room (if you haven't got one at home), going to visit a dear distant friend or better still, inviting the friend and arranging for them to come and visit him at his home - even if it means paying for the friend to trave. Or you could induldge in some activities - for just a few hours -- that he could look forward to -- I don't know, but don't you live where there is snow/ice? Does he like fishing through ice on a like? Has he ever tried it? Could he? I know it sounds pretty silly, but its meant to be an example of something 'way out' that he's never done but has always wanted to.
I find that my whole life revolves around a much different timetable. I plan ONE major 'activity' everyday -- doctor's visit/coffee, going for a walk around the local lake/coffee, shopping/coffee, visit to a friend, attending a class to learn something new, etc. then home for the rest of the day - usually the rest of the afternoon -- lying down on my comfortable couch in the living room where I can be in the 'heart' of the action of my family. Occasionally I will garden, do some light outside jobs, etc. -- a very different lifestyle from my past full time employment which was more like 60 hours a week!! But hey! I find that once people heard of my lifestyle and understood why I was doing it -- basically to conserve as much energy as possible -- they started coming to visit me here at home on a regular basis so I've been able to keep up with my important (for me) connections with my former workplace. So to wind up this long and rambling message I would just like to conclude with trying to help you to understand that a MM patient KNOWS just how much they can/can't do and they will try to push themselves to do more than they should in order to make YOU caregivers happy because we HATE seeing you suffer because of our illness. When we can all understand exactly where we are -- physically, mentally and spiritually -- and we are able to live within our limitations, then life can be wonderful. By having staged ACHIEVABLE goals we learn that planning for the future IS possible. Sorry to have gone on so long -- I'm sure there will be typos but I'm not going to check for fear of losing all of this!! Best wishes to you, your brother and your family Ron. You are often in my thoughts and prayers, Cath