Hi Jewel, I, like the others who have written, am thinking of you, and wishing you some peace amidst the limbo dancing. What a gift the love you shared, and still share, with Mark is - you write so beautifully about it. His legacy of love and care for you just shines out from your words. I have a friend whose husband died 12 months ago, she recently told me, "it doesn't actually get easier, in fact it gets harder, then somehow it changes and you find yourself living on." I don't know what that is like for her, but I feel privelaged that she allows me to share time with her during the hard slog it's been. The hope she gives me is that the overwhelming sadness can pass, and somehow changes, in the time that's right for each person. I've found this to be true in my own journey with cancer. I don't know if it is of any help to you in your journey, but I do wish you well. And I hope you can find people to travel alongside you who can help with the debilitating stuff - maybe a new doctor? Take care Zen ... View more

Hello Thaker, Gee your work place management need a smack with a "clue stick" , so much for being in the days of good HR and showing emotional IQ. It could have made more sense if the management had asked you if you wanted to talk about the impact of the scenario from "your" perspective....they'd have then got a realistic understanding instead of relying on a "fictional" account. Oh Yes.... I relate totally to the relative "invisibility" thing too.....the same as happened here, Marks family, all bar one brother, have virtually forgotten us! Anyone would think that by our darlings dying of cancer , we have now been infected and we're going to spread the disease to anyone who comes in contact.... My poor darling son said as much this week, when I overheard him asking his sister why people were not helping us anymore.....he can't understand "why Aunty "D" or his stepsister don't phone him as much anymore" My daughter who is a little more succinct/cluey about human behavior was consoling her brother with answers like " Ohhhh they're probably busy" "they still love us but are working hard" etc etc I hate to think that my "to do pile" is still going to be there in a years time......and yet right now I don't think I have a choice as to how quickly things will sort out, so I figure I'll just try dealing with todays hell... ((hugs to you)) Jewel ... View more

Jewel The tough questions will continue. My four year old asked me yesterday why everyone else at kinder has a dad but she doesn't. I guess with father's day coming up there'll be a lot more questions and a number of sad moments. Sangeeta ... View more

Many thanks to all of you, for reading my ranting and understanding....as I know many of you are experiencing your own levels of conflict and pain too. The circumstances around my story have not improved, I don't expect things will change for some time......I do however, appreciate your caring enough to write your thoughts and wishes. Jewel x ... View more

Hi Jewel, I guess this is a time that you wish Mark was just like everybody else, instead of being 'special' with this rare disease. I hope 'they' can use the resources available to them to find the best way to deal with this for Mark and your family. Thinking of you, words seem pretty useless, but know that we care, Jill ... View more

Hello Jewel, I can only imagine the turmoil you are in with what has happened, I think it is more the speed in which these things can happen that throws us more than dealing with the everyday. I can empathise with your shock to some extent. The best advice I can give you is, do whatever you feel you want to do...do not try to please anyone else. You are the one dealing with this, not his disconnected family. If you do not want to answer their questions then tell them. We all deal with things the way we can, so most importantly, ask for help if you need it, do not try and do it alone. I wish you strength and you have my compassion. Hugs Dizzy ... View more