Hi Maureen. I have tagged on to a conversation between Annie333 and Andrew the Old Hippy (I am 59 and sitting here burning my incense while I write if you read this Andrew). I wonder how you two are going as you both write so well and I totally love your comments despite the black humour and 'painfully' relevant comments. This is such a new experience for me and other than this site there is no-one else to compare with or talk to. If I had breast cancer or one of the more common ones others would understand. If I had scars from operations they would sympathise, but at the moment other than some weight loss and a painful limp as I recover from a fractured spine, there is little to remind people that I can't deal with stuff like I used to. I still have a son at home who thinks I am infallible and can come home and cook every night. My garden and lawns look terrible. You say Maureen that you didn't know about the pain to come, which I also found, and I didn't even know until I read the comments on this site that I will get tumours!! I sort of get now why my specialist was so sympathetic when he tod me what I had, and at the moment with the fewer symptoms I have perhaps ignorance is bliss. However I am one of those people who need to know what's coming in order to plan ahead. The big questions like how long can I live teaching in a country town with no family in sight and on my own? Should I sell up and move to live near my sister and buy a small house - or should I move into a retirement/nursing home instead? I don't want to be a burden but I don't want to be on my own either. Well I guess I just sit back and hang on for the ride! Hope the chemo works for you Maureen. I have read some positive stories about how it has given some people a break from the disease for a while to be normal for a while. ... View more

Just read what you wrote some time ago about lifting and fatigue etc. I have been assessed tentatively at smouldering MM, but have had three fractured ribs and a fractured spine. Am starting to come out in weird spotty bruises and am exhausted to tears while I try to maintain a full time teaching job. I am starting to listen to my body and finally learning to say 'no' but it is a difficult thing to do at work which I love, and am at home with a teenage son who is not the most nurturing kind (and I don't want his life to be obsessed by this anyway). Shopping is almost impossible without him to lift things into the trolley, onto the counter and into and out of the car. I worry how I will cope without him but he has to live his life and will be travelling next year. I wonder how long the 'smouldering' will last as I seem to have a lot of Stage 1 symptoms. I have been a single parent for 18 years and am very independent and used to having battles which I get through - but not this one. Still I am not letting this disease define me and while I can I am going to be as normal as I can - and feeling lousy!! ... View more