Hi Samex I haven't had the experience of peripheral neuropathy and I hope I never do. For personal reasons I hope I do not have to take any of the platinum drugs. However, I have experienced Plantar fasciitis, and had to stop going to the gym as a result of it and have never got back to going again - maybe a New Year's resolution! In the end I gave up on physio, voltaren cream rubbed into the foot, orthotics, built up shoes, and exercises that might have helped the foot but made walking almost impossible because they transferred the pain to my calf muscles. I went back to my GP and asked for a cortisone injection into the inflamed area. It is listed as one of the legitimate treatments for Plantar fasciitis. It worked a treat. I only needed one injection and have had no problem since. Cheers Sailor Although it smacks of seamanlike efficiency; to say that we got our anchor and sailed out is not strictly accurate. It leaves much unsaid. H. W. Tilman ... View more

Hi Aylaah Go right ahead and vent, and do not apologise. It is what this site is for, amongst other things. It is really tough for your family just at present. Don't forget the Cancer Helpline 131120 it is there for everyone affected by cancer not just those who have it. There is also some fantastic material around about helping children, ask them about it. It is also that dreadful uncertainty. A friend of mine died last year from cancer - she was given three weeks and lived another four months. She commented to me how she felt such a fraud as she had got the family together, said all the goodbyes, put things in order and was still there four months later. So yes it is a bit like "how long is a piece of string?" and again a demonstration that we are all unique individuals. So take care and look after yourself as well as your family will need you. Regards Sailor And when the day arrives I'll become the sky and I'll become the sea and the sea will come to kiss me for I am going home. Nothing can stop me now. Trent Reznor ... View more

Hi Johoney Yes we all manage this thing differently - I never use the word cope, I manage things, it puts me in control. It is just as well, it would be a terribly boring place if we all did things exactly the same way. So I don't think that in anyway you have been a scaredy cat, you are just you and it is your way of managing the situation. I had a friend with leukaemia, she came out of remission for the the first time a few years after she was treated, it was the time I was first diagnosed and she had the office three doors down the corridor from me. She had more treatment, but always knew that from then on it was a matter of when, rather than if it, came back. We had some great discussions, some deep and meaningful, about our various prognoses. Two years ago it did come back with a vengeance, but she lived for four months longer than anticipated. The extra time allowed her to do a lot for the family, to be reconciled with her daughter, and to put her house in order. She died very peacefully. It is great that you have found out the good stuff and the options for if it ever does come back. Enjoy the interactionson this site. Cheers Sailor At sea, the boat is the professional and the crew are amateurs...Anon ... View more

Hi Joyhoney Echo Jules2's thought - 36 is nowhere near mid life, so you can't have a mid life crisis. One proviso - instead of a daffodil a picture of you in jacket with tassles on the bike as ypur avatar! Cheers Sailor ... View more

Make a statement - go for it Sailor ... View more

Hi Em1 Cancer of Unknown Primary says it all. What is it - is it as some have suggested coding errors when entering data? Is it pathologists not knowing how to classify something they see? Is it, as the CI NSW suggests, a cancer in it's own right that has not been recognised? Interesting questions that are going to require some dedicated research. But, that doesn't actually help you! You are left hanging. No one understands what you have, there are no specific support groups, there is little in the way of information. In effect you are in some sort of "classification suspended animation". So good on you for working to get this onto agendas around the place, to have this better researched and to have better support for people like yourself. Regards Sailor ... View more

Hi There The suggestion of Samex to see the social workers at centrelink is a good one, and ask them about you getting the carers payment. Not the carers allowance which is a pittance, but the cares payment which is about the same rate as the disability pension. Whilst it is technically for caring for a disabled adult and there is a disability assessment, there are precedents and last year the Commonwealth Ombudsman hammered centrelink over its treatment of people affected by cancer. So see the centrelink social worker and ask Cheers Sailor I think the sea has thrown itself upon me and been answered, at least in part, and I believe I am a little changed - not essentially, but changed and transubstantiated as anyone is who has asked a question and been answered. Hart Crane ... View more

Dear Mrs Elton It is actually a privilege to read through something like this as you are prepared to share with a group of people who are spread thinly across the country some of your innermost thoughts. It is great that the boys are getting the help they are, and yes the changes with Greg are fairly major. I have a friend who currently has only a few weeks to live and her husband died of a brain tumour. The symptoms you described with Greg are pretty similar to the ones that she used to tell us about. Centrelink - it is a real maze trying to navigate through there. A tip is that next time you are in the Medicare office,ask to see the centrelink person there. They are mainly meant to deal with senior and pensions, but they absorb the helpful Medicare culture rather than the unhelpful Centrelink culture and they might help you fill in the forms. They did in our case. Take care Sailor I keep sailing on in this middle passage. I am sailing into the wind and the dark. But I am doing my best to keep my boat steady and my sails full. Arthur Ashe ... View more

Hi There Teacher Mum Good to get your posting and to read your responses to what life throws at us. In spite of all the other stuff that goes on, on this site and elsewhere, you can still feel kicked in the guts now and then. Just before Christmas I attended the funeral of a lovely lady who had been such a campaigner on behalf of those affected by cancer. Cancer finally caught up with her, two years after it was expected. Two good years with good quality of life. Last Friday I attended another funeral - a friend who was just so active, diagnosed with liver cancer and dead three weeks later. Two days ago another friend 'phoned me asking for some help. Six weeks ago she was given "No evaluable disease' status following a rare cancer of the small intestine. She was taking a break from chemo and went in for repair of a hernia. They discovered a whole lot of cancer that was not there six weeks ago, including ascites! It really takes it out of you! So congratulations on what you are doing and have real laugh at the 'look good feel good' program with your shaved head and hyster scar. Cheers Sailor A strong nor’-wester ’s blowing, Bill! Hark! don’t ye hear it roar now? Lord help ’em, how I pities them Unhappy folks on shore now! The Sailor’s Consolation ... View more

Hi everyone I'm buying into this in a big way as I think we have a lto to be proud of here in this country. Yes you can cite places like the Sloan Kettering, but we aslo have places like thew world renowned Peter MacCallum Cancer Institute. It is all very well to cite the best of the US, which has a mauch large population that Australia, but we also need to look at the worst and the average. Irt may surprise people to know that according to WHO statistics our five year survival for all cancer is well ahead of the US and thrid in the world behind Sweden and Japan. Not bad for a population of 20M people in a country the size fo the US. It is however, the aim of the government ot have two centres as good as anywhere in the world, the new one in Sydney that Chris O'brien fought for, and the Parkville Comprehensive Cacenr centre that will incorporate the Peter Mac. Having experienced health care in the US and Eurpoe, I can say that I thank God each day that I was treated in Australia. The treatment I had was not avaialble in Europe and I could not have afforded it in the US. The treatment was given by a radiation oncologiost who is world renowned and at a centre that is a Beta test sight for one of the mnajhor medical suppliers hi tech equipment. Colleagues int he US were amazed at the equipment use to treat me - not yet avaialbel in the US at the time. Yes there are probolems with our health system, but nowhere near the problems that they have int he use, where it costs 19% of their GDP compe=ared to an OECD avergae of 8% - we are 9%. As I said, you have got me going. Cheers Sailor ... View more