CancerCompass message board discussion started by zazu1234 on 1/1/2008 http://www.cancercompass.com/message-board/message/all,19285,0.htm Wed, 27 Aug 2008 00:00:00 GMT Wed, 27 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Call it what you will. but some of us feel many different emotions when confronted with difficult situations. It can be "labeled" as negative or whatever. Some people fish every post and look to slam anyone who may be distressed. People should not be encouraged to be negative however some people who share similar feelings should be able speak on a cancer blog that does not say (too bad if you deal with stress not in the way some others do then keep out} please do not fish here.  if you have nothing but the desire to stifle anyone who is very upset and may be angry or discouraged. This site is for cancer caregivers patients and doctors and sometimes people have to go through phases to get into a better mindset, I am sure that if I were told I have a serious disease that my reaction would not be too positive. So please give us the chance to go through the necessary phases and most likely we will see a better way of dealing with a difficult situation like some others have been able to do  PLEASE  zazu1234 Tue, 01 Jan 2008 00:00:00 GMT By the way .   My brothers doctors who told me 7 weeks ago  that M/M is treatable and one can live with M/M now  told me "a few months" at best.!!   We are all so positive that while he becomes weaker we are planning a cruise and going to Disney world!! zazu1234 Tue, 01 Jan 2008 00:00:00 GMT I am a patient who lives with MM 24-7. And you know what? My WIFE lives with it 24-7, too. So I invite anyone to walk in my shoes or my wife's shoes for one day, anytime they want to and tell me that you don't need some POSITIVE incouragement pretty regular! So I agree with you. Let's all be reminded of that old saying, "If you can't say something, then don't say anything at all!" Poppy 1952 Tue, 01 Jan 2008 00:00:00 GMT I meant to say "If you can't say something good, don't say anything at all" Poppy 1952 Tue, 01 Jan 2008 00:00:00 GMT oh yea did you hear of the optimist drown in the half filled tub?? keep positive keeeeep positive !!   please refer to the heading !! zazu1234 Tue, 01 Jan 2008 00:00:00 GMT I second that heading, because all of us cannot be positive 24/7.  roadrunner Tue, 01 Jan 2008 00:00:00 GMT  On 1/1/2008 Poppy 1952 wrote:I am a patient who lives with MM 24-7. And you know what? My WIFE lives with it 24-7, too. So I invite anyone to walk in my shoes or my wife's shoes for one day, anytime they want to and tell me that you don't need some POSITIVE incouragement pretty regular! So I agree with you. Let's all be reminded of that old saying, "If you can't say something, then don't say anything at all!"Hi I'm LizI agree with you 100%. We feel plenty negative about cancer, pain suffuring ect... But we need positive feedback to help us keep on fighting.Without positive we wouldnt have the streinght , to never give up.I have a 10 year old with terminal brain cancer ,and I find your previus discussions on this site very up building and encouriging . Refreshing!!!!!! Thank you all for your positive inputs.I would be lost without it.   Timmys Brain stem glioma Wed, 02 Jan 2008 00:00:00 GMT Hi-I've joined the group in the last few days, and have mostly been on the esophageal cancer board since that is what we are dealing with, but I saw your note about your son.  I don't know how open you are to alternative healing, but I know if it were my 10 year old I would be desperate and open to other things.  I have been involved with a group who work with tongren healing, and they have had some amazing results with various brain cancers.  I know several women in class with me regularly over the past year whose brain cancers are gone, and children tend to respond very well to treatment.  Tongren is based on the premise that we use the collective unconscious to heal in a time of crisis.  We have dolls which are used in acupuncture training, marked with various acupuncture points and meridians.  It is a blend of eastern and western healing methods as it incorporates acupuncture points, but is based on western anatomy and diagnosis.  They have done a survey with Harvard Medical and Dana Farber on it, to try to set up a study on it.  We tap on the dolls with magnetic hammers on areas which correspond to various diseases to unblock the energy and allow the body to heal.  Tom Tam developed the system through observation over many years of acupuncture work.  Many of the leading cancer institutes such as M D Anderson and Dana Farber are beginning to study alternative therapies to use in conjunction with their treatments.  There are guinea pig classes (we are the guinea pigs) around the world with a large concentration in the Boston area where the method was developed.  There is also a conference call line where they do the work over the phone for those who are unable to attend due to health or distance.  If you google tongren healing you will find info on what it is and where it is available either in person or by phone.  I urge you to try it.  I know it sounds crazy, and too good to be true, but I've seen things in class that are unbelievable such as my diabetic friend whose sugar had dropped dramatically since starting to tap the doll (this is a common event in class).  You have nothing to lose but the things we want to be rid of anyways.  Good luck with your boy!  I will keep you in my prayers.    tongrenhealer Wed, 02 Jan 2008 00:00:00 GMT Good morning Tongrenhealer and thank you for your post. I surely will be be doing a google search. One of the positives about my having had this disease is that it has opened my mind to many alternatives, and energy healing in many forms is just one of them. You mention the collective "unconcious" while one of the healing modalities I have been taught by a young Canadian energy healer called Adam, is using the collective "conciousness" as a powerful healing tool. Some may call it prayer. It is an energy which can be tangibly felt when done in group even at a distance. Another tool for self healing which I have explored is EFT which involves tapping as well and is very effective as is meditation and visualization. Becoming aware of the mind/body connection with regard to healing and other important aspects of life is a gift available to everyone. It may be necessary for some to take a chance by "thinking outside the box" which of course is very very difficult to do when life and death decisions are having to be made and the "known" gives us much more comfort and confidence than the "unknown." Shemay Wed, 02 Jan 2008 00:00:00 GMT 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 poppy/cath Wed, 02 Jan 2008 00:00:00 GMT I think the point which some people are missing is that THIS FORUM IS FOR EVERYONE!  We are all dealing with MM.  Some of us have sacrificed our lives to care for someone with it (as I have).  Just because we don't have the cancer, doesn't mean it doesn't effect us.  I would gladly take it from my mother so i didn't have to watch her suffer. I'm really happy that you are so positive.  I mean that.  I'm curious if you met your spouse post-diagnosis.   It's great that you can be positive but not everyone is like you.  As the Original Poster said we are all different and handle stress differently.  MotherWMyeloma Thu, 03 Jan 2008 00:00:00 GMT A great post Cath. Perfect explanation of your strengths and weaknesses and experience with MM. I can relate to it 100% per what I have witnessed my wife go through with her MM.As far as positive vs. negative posts ... I can understand why some (either those with MM or caregivers) desire to vent frustrations, etc. I have those same feelings from time to time, but don't find it personally advisable to express them on this forum. I do however think that it is very appropriate to speak realistically about treatments, healthcare systems, medications, research, alternative methods, etc. but emotional ranting doesn't do anybody any good. On the other hand, neither does being overly positive to the point of fantasy. Keep it real, keep it positive when possible and always be actively looking for a solution or better way.Thanks again for a great post.Craig  photog Thu, 03 Jan 2008 00:00:00 GMT Just couldnt resist could ya !! zazu1234 Sun, 06 Jan 2008 00:00:00 GMT Hi ...  Having MM means that you go from tears to laughter( maybe hysterical) daily. We are all suffering in some way but I find this site helpful because we can share... whatever we feel like... and that will vary according to the place we are in at the time.  The diagnosis was a bad shock... but what has been worse has been loosing my job - with it my income, interest, self-esteem, companionship. The disappearance of friends and family... living in poverty... There that's quite negative.. I live alone, my partner of 11 years has slowly withdrawn. BUT i have 3 adult children and I am determined to keep going and remain positive for them. It's very important having a reason to live....   being positive is hard, but it is actually good for you.... my best wishes Carol Casamagorical Wed, 23 Jan 2008 00:00:00 GMT Hi Carol!  I can relate to all that you say, for I too felt that I had lost 'everything' when I was first diagnosed with MM.  I was so busy trying to learn as much as I could and undergoing major chemo and radiation followed by two major bowel operations as a result of being allergic to the dexamethasone, then huge abcessess caused by the operations that it was almost 12 months before I could go back to work -- that was my major aim.  However, I only lasted less that 12 months on a very part time work schedulle - my employer was fantastic in allowing me to work whatever time I could - but eventually I was in too much pain and too tired so I had to resign.  Applying for the disability pension and facing the end of my working life, which at that time was the focus of my own self esteem, was the hardest part of having myeloma!  I then went on to the Velcade clinical trial and after several months I nearly died.  What was the point of living to be that sick and haved lost 'me'?!?  Well, the love and support of my family and friends helped me to focus on trying to live and then along came Revlimid, which for me has been my saviour drug for the last 18months!  I have regained much of my health, though there have been bouts of illness along the way, and more importantly I have found a new 'self focus' which has again given me purpose and direction for living.  What is this focus I can hear you asking?  Its actually two fold. Firstly I have started a general cancer support group here in my city - there were only cancer specific groups such as breast, prostate, bowel, etc.  No where for people with 'different' cancers like MM, lung, leukem, etc. Now we have grown from 12 members to a mailing list of over 70 and monthly meetings in just 4 years, showing that this group was really needed.  So this group and being a part of an educational group - U3A - has made a huge difference for me.  I have adjusted to my new daily schedule -- being active for 3-5 hours each morning followed by total rest for the remainder of the day/evening -- gives me enough rest to keep me healthy.  If I overdo things and don't keep to this schedule I DO get sick -- its happened too many times for me not to understand this!  I really feel for you being on your own -- I am truly blessed to have the love and support of my Bob -- and I understand many of the difficulties you face doing this journey on your own for we have several members of our support group in the same situation.  Coping on the days when you are either sick or down must be so difficult without someone like Bob to comfort or laugh you out of it must be really hard!  I'm sure that friends would help if you shared this situation with them - even if it meant that they sent an SMS message or a telephone call.  Hey, perhaps we can support you 'on line' when things get tough??!!  Seriously, we know what you are going through for we too have been there or are still going through it -- and who better to share both the highs and lows with you??  If we set up a 'special' message line -- something like HAVING A LOW TIME where people can vent their frustration/pain/sadness whatever and others can join in with empathy or sympathy -- do you think this could work?  Its just a suggestion.  I don't claim to have an answer for everything, but I try to keep my mind open to POSSIBILITIES -- why not try something new and see if it will work?!  I do hope that this seriously low time caused by your job loss starts to change -- it did for me as I started to fill my 'active' time with new and different things -- things that didn't equate to the satisfaction that I used to get from my job, but things that initially filled my time with something meaningful -- which led to meeting new and different people and gave me a new meaning to my 'life'.  Hopefully something similar can happen for you -- what about doing some voluntary work during the hours when you feel well, just to get you out and about?  Again, just a suggestion.  Best wishes Carol - from my experience I can honestly tell you that there is LIFE with Myeloma!!  Cath  poppy/cath Wed, 23 Jan 2008 00:00:00 GMT