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