About Sailor

Sailor

Dear Pamela There is no excuse for people to be in ongoing pain and the biggest risk is that if it is not dealt with the nerves become patterned into sending the pain signals and you end up with chronic neuropathic pain. Talk to you specialists and ask for referral to a pain specialist or a pain clinic (there is often a long wait for the latter). Go to the Painaustralia website for further information on pain management. Dry mouth is often a problem and manu of us have it. it is not only the awful feeling overnight, but there are serious sde effects as if you are not producing enough saliva then stuff is not being washed off your teeth and you can end up with dental problems. My dentist has me on a special high flouride tooth past and mouth wash which seems to protect my teeth, but doesn't do much for the dry mouth. I have discovered some stuff called biotene which comes in a variety of forms - gel, overnight gel, tooth past, mouthwash and chewing gum. I find that during the day it is OK as I can keep up the fluids and sip water while I work. The overnight gel is fantastic. If I wake up during the night with a biltong like tongue (great description - thanks!), I put some of this in my mouth and not only does it address the problem but it keeps working for three to four hours. Talk to your dentist about it, but it is available in pharmacies. Cheers Sailor O God, thy sea is so great, and my boat is so small. Breton Fishermen’s prayer

Sailor

G'day there folks I am not an expert on these things but I insist on getting a copy of any reports, pathology or radiology. I have found from time to time that I man the only one who seems to have a complete history of these and have ben able to supply a new specialist or consultant with copies they seem to have problems getting elsewhere. So advice for anyone starting on this journey. Get a portable file/folder with plastic sleeve or pockets and keep a copy of everything. Interpreting results - I am not sure just what that means. My latest CT has things increased in size and a few new things that are small, but no-one seems to be too worried about it. They have ordered more tests. I guess the term stable is relative - it is not as bad as it might have been, not a lot has happened so the term stable is used. I always ask my specialists about these and they give me honest answers. Cheers Sailor Never go into strange places on a falling tide without a pilot. Thomas Gibson Bowles

Sailor

G'day Josh For most of the past fifteen years it has been a matter of when, not if. So you can get pleased with the little things, that the latest tests dare not as bad as they could be, so that is a good thing. You also can get quite philosophical about things. I don't have a 'bucket list' of things that I want to do before the final recurrence occurs. But I do know people who do and they are getting through all tho things in that bucket in quite a systematic way. Good on them. Me, I'm happy to take things as they come, manage within the limitations from the side effects, and try to enjoy life as much as I can. I do find that I cannot tolerate turkeys as much as I used to. Don't have the time to put up with peoples oversized egos. I have said on this site before, but up on my wall I have a quote from TimCostello "There are times in life when we have to face the big questions, to look squarely into the face of death and then affirm the sheer gift of life" . Cheers Sailor For life and death are one, even as the river and the sea are one. Kahlil Gibran

Sailor

Hi I am both flattered and humbled that you would note that the three months are up. I have been feeling well although I have put on more weight which I wish I could lose. Blood tests ten days ago. PSA up, but only about half as much as in the previous three months. Good news, it might have been worse. CT scan showed that the mass in the left iliac nymph node has grown and there a a few masses in other lymph nodes, that are just on the size detectable by CT. My medical oncologist does not want to give me chemotherapy - yet! So he wants me to see my radiation oncologist, which I do in ten days time. I have had some pain in my shoulder with a bit of indications of nerve being pinched in the spine so he has ordered an MRI just to make sure it is arthritis not bony metasteses, plus an ultra sound of the shoulder. Apparently that will take a few weeks to arrange. So I feel a bit like Schroedinger's cat (Google it!) or living in limbo, that place where medieval souls went while it was decided if they were destined for heaven or hell. I still feel well and it is great to be having no treatment and to feel normal. Cheers Sailor I hate storms, but calms undermine my spirits. - Bernard Moitessier PS: If Schroedinger's Cat walks into a forest, and no one is around to observe it, is he really in the forest?

Sailor

G'day Harker and congratulations! You are most welcome back to our society. The society of those who have had cancer. Forget the other society, you can never rejoin it. You can observe it, you can partake of its festivities and rituals, but we have all done time and that marks us as different. Congratulations on being let out on parole Sailor “Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place” Susan Sontag - Illness as Metpahor.

Sailor

Hi dumperdrose Unfortunately this has been an ongoing issue for many many people on this site. the loss of friends. There is a long thread of comment here on the site, not sure how to search for it, that discusses this issue. Take care Sailor

Sailor

Andrew, I hope you are sitting somewhere peaceful, round a fire pit and telling yarns. Rest in Peace Old Hippy. Sailor This be the verse you 'grave for me: Here he lies where he long'd to be; Home is the sailor, home from the sea, And the hunter home from the hill. R L Stevenson

Sailor

Hi silly Yes, for the moment. Will review in three months. Cheers Sailor The effect of sailing is produced by a judicious arrangement of the sails to the direction of the wind. William Falconer

Sailor

Hi Everbody It is a while since I have posted much on this site. I lob in from time to time, have a look at what is going on and think, isn't it fantastic, everybody is blogging away, contributing and being helpful. It is great. My own situation. After fourteen years and various treatment I stopped responding to hormone manipulation about twelve months ago. So the standard response was more of the same but stronger - total androgen ablation it is called. That did nothing. So I am what the medics insist on calling "Castrate resistant". I used to be "hormone refractory" in the old terminology.! I keep reminding them that along with fifty percent of the population, I have been castrate resistant for a long time and will remain so. They don't seem to see the joke. It does raise a lot of philosophical questions about the use of language and maybe they ought to consult those they are describing regarding appropriate terminology. Enough of linguistic philosophy - if you want to think about that go and see the play "Tribes" that is on in Melbourne at the moment. So after scans and more scans, it was decided that some radiotherapy to lymph nodes wouldn't go astray. The latest technology was used. The beam was shaped to zap the tumour,but not the artery running through it, and if anything inside me moved during the treatment, the robotically controlled bed I was on moved to compensate and bring everything back into the line of the beam. PSA dropped immediately. Three months later PSA is up again, so clearly it is growing somewhere else. What to do? Well there were three options: 1) more hormone therapy with a slightly different combination of drugs - no reason to think that it would work and I would be stuck with at least six months of side effects. 2) more scans to see if anything could be found elsewhere - then what to do? 3) do nothing and have more tests in three months. I'm feeling well, I am free of the head fog that is a side effect of the treatment so am thinking clearly for the first time in eighteen months. I am content ith my decision. Sailor As we live a life of ease Every one of us has all we need Sky of blue, and sea green In our yellow submarine. Beatles, Yellow Submarine

Sailor

G'day there There are lot's pf stories around about animals instinct, dogs being able to detect cancer and so on. I know there have been a few trials on using trained dogs to detect certain cancers, not sure of the results. However, I do have a personal experience. We have a rather large Moggie, a real gentle giant, but all of 8 kg. You know it when he jumps up on you in bed! The first time carrot-top and blondie, the twin grandsons stayed overnight with us. I was woken by Moggie not only jumping up on me but walking up and down until I got up. Carrot top had somehow or other got on top of his bed clothes, was cold and was whimpering slightly, but still asleep. Both of them needed a nappy change. Did all the necessaries, put them back to bed with Moggie in charge. Cheers Sailor. Earth and sky, woods and fields, lakes and rivers, the mountain and the sea, are excellent schoolmasters, and teach some of us more than we can ever learn from books. John Lubbock

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