Hi Purpleangels What an evocative alias you have chosen, it conjures up great things in my imagination. That aside, I am really pleased that you will be meeting with others and finding out that you are not alone in all of this, that there are others with similar experiences to yourself. I can remember just how important that was to me at the time I was going through treatment. Also glad that the oxycontin is being used to control things. Again they should be able to get a balance where there is good pain control without the sleepaholic side effect. However, if he has been in a lot of pain, it is awfully tiring and he may have a bit of sleep to catch up on. Take care Sailor If in doubt, stay out to sea. No one has ever gone aground on a wave. Anon ... View more

Hi there I hesitate to get involved here, remembering the old proverb - fools rush in where angels fear to tread. What is the cost in physical and emotional trauma to the 100 people who get a false positive? A biopsy is not a risk free procedure, the psychological trauma for a young woman to be told that she might have breast cancer and needs further tests, multiplied by 100 for every woman found to have a real positive result? I belong to a cancer group where many wish that the existing blood test for the cancer would be used as a screening tool. It is not, although it is probably as reliable as some of the other screening test that the government funds. The problem again is the number of people who have to go through a risky biopsy procedure and the psychological trauma of thinking that they have cancer, for no reason at all - a false positive. Unfortunately the evidence does not support it. Yet I am one of those that was detected with an aggressive cancer at a relatively young age. If I hadn't had the test I wouldn't be alive now. Also no one talks about the false negatives - those that the test says do not have cancer but who actually do. When the test moves put of the safe zone for testing, then the number of false negatives can also increase. The issue is not one of having the decision makers sit down and listen to individual stories - it is a matter for them of deciding what is best for most people. They are not unfeeling people and they do not make these decisions lightly. Most of the committee that make these decision also have people sitting on them who have had a personal experience of cancer (or in the case of other diseases, the relevant disease). Believe me these 'consumers' are not afraid to be vocal, but they also have to take note of the evidence and make decisions that try to achieve the greatest good for the greatest number of people. Regards Sailor An incorrectly identified mark is a hazard, not an aid, to navigation. Alton B. Moody ... View more

Hi Judy don't know a lot about RCC but I do know a few people who have had it. One in particular has been in for the long haul with Sutent and seems to be going OK. Some sort of special deal was done by his oncologist regarding the cost, but I don;t have any details. Cheers Sailor ... View more

Hi Rabbit Yes it is tough and yes oncologists hate putting a time on things as basically they do not know. Everybody is an individual/ while you are on Google. Google "The median is not the message" It is Stephen J Gould's essay on receiving the news that he had mesothelioma of the stomach. The median life expectancy for that is eight months - he lived 20 years. Also just think of all those stories out there of "The doctors said I would live three months and her I am alive after five years since I started taking ---- juice" Everybody is an individual and reacts to cancer and treatment differently - so the oncologists are not begin hard hearted - they are trying to do their best under difficult circumstances and when they really do not know themselves. Surgeons - well their training generally includes a subject "poor communication skills" - just think of Doc Martin on TV! Plan to take your mother to Venice. Tell the oncologist that this is what you want to do as soon as she has had the chemo and things have settled down. It is a pretty potent mix that she is being given. Look on your oncologist as a partner rather than an obstructionist - try to work with them, it is important in the long run. If they are not responsive seek a second opinion it is your mothers right. Regards Sailor And when men lose confidence and trust in those who lead, order disintegrates into chaos and purposeful ships into uncontrollable derelicts. Wall Street Journal Editorial 1952 ... View more

Hi Purpleangel Have you asked to see a pain specialist? It would be a good idea even if only to get a better idea of pain, how it responds and how you can manage it. Paracetamol (Panamax) is a very good pain medication. As explained to me by my surgeon many years ago, it is important to take it regularly rather than waiting for the pain to come. The aim is to keep the pain from breaking through. The way he told me to take it was a bit different to what they say on the packet, so ask a pain specialist. In my case I was also prescribed anti-inflammatories as apparently they work together with the paracetamol. Certainly they did in my case. There may be other pain med's that you can be prescribed. It is not a metter of waiting to find out what causes the pain- it is important to get the pain under control and then find out what else is happening. Regards sailor An incorrectly identified mark is a hazard, not an aid, to navigation. Alton B. Moody ... View more

G'day Ratty It is a real fright, but the story is not all that bad. According to the Cancer Council Victoria's most recent information on cancer survival: "The 5-year survival for men with testicular cancer is 99%, the highest survival rate of any cancer." Time trends: "Survival improved over the 15 years from 1990 from 93% to 99%." "A clinician’s comment “The excellent survival for testis cancer is a reflection of the marked sensitivity of this cancer to treatment including surgery, radiation and chemotherapy. The improvement in survival since the 1980s is likely to be due to several factors, particularly the identification of highly effective chemotherapy in the late 1970s and early 1980s, and increased awareness of the condition resulting in diagnosis and treatment at an earlier stage.”" So while it is a worrying time just at the moment, and it is going to be a pretty rough period for you all in the next few months, the long term outlook is pretty good. There are some questions that you need to ask of his clinicians and they may have already raised these issues with you. You do need to ask about future fertility issues and what the options are. You also need to ask about the psychological effects and seek to have counseling available if it is necessary. So do take care but remember, the long term outlook is good. Cheers Sailor So when storm clouds come sailing across your blue ocean Hold fast to your dreaming for all that you’re worth For as long as there are dreamers there will always be sailors Bringing back their bright treasures from the corners of earth. Eric Bogle, Safe in the Harbour ... View more

Hi vinouche Welcome back and so glad it was a good time and a restful time. A chance to put the last six months out of your mind. Well the reality hits, but lets hope those scans and bloods test are all good. cheers sailor It was a strange and pleasant life for me all summer, sailing entirely alone by sea and river...John MacGregor 1867 The Voyage Alone in the Yawl Rob Roy ... View more

Hi Roberta You don't have to be strong, you don't have to be positive, you are allowed to feel weak - (after all you're having chemo!) and it is OK to be angry, have negative thoughts and emotions. It is good to acknowledge these things and that you do not have to fit into other peoples image of what they want you to be. Yes trying to live for the moment in the middle of cancer treatment is hard, perhaps you do need to live and hope for the future after treatment. As far as the 'Why me' - I guess it is equally valid to ask why not me. By the time we are 75 one in three men and one on four women will have experienced cancer - there's nothing special about getting cancer, it seems to be a pretty large part of our living. An oncologist once explained it to me that cancer results from mistakes in the replication of the genetic material when cells are dividing. The body is pretty good at repairing mistakes, but when you consider the sheer number of cells that are dividing in our body at any one time, it is really pretty amazing that there is not more cancer. Family and friends do try and do their best most of the time. But remember they think that if you are positive and feel strong you are doing better and besides you are easier to live with. So don;t feel you have to live up to their expectation. If you feel terrible you are allowed to admit it. Regards Sailor Love one another but make not a bond of love: let it rather be a moving sea between the shores of your souls. Kahlil Gibran ... View more

Hi Samex I too felt that it was a poem of hope, regardless of any religious persuasion, so hope that it is of benefit to someone. Sometimes I think in our desire not to offend anyone we forget that religion does bring hope to a lot of people. Regards Sailor ... View more