I had two items of news from my oncologist yesterday and neither of them were good. My treatment regime for multiple myeloma doesn't seem to be doing anything as the protein reading is still rising. So we'll give it one more three week course and in the meantime he'll investigate another option. I have stem cells stored away for moments like these. The other piece of news is that my kidney disease, caused by the myeloma protein, is reaching a point where dialysis is clearly going to be necessary. That's been looming for a while but, well, here it comes right now. Once I start, I'll just keep dialysing as long as I live. It sounds like I'm going to become part machine. I remember struggling to find a space within which I could deal with being diagnosed with cancer when that occurred three and a half years ago. Right now, I'm not struggling with this news in the same way. There's not the same angst that the first diagnosis caused. This experience is very different. I am calmer. I allow myself to cry if I feel like it. I can talk to my wife about it and I haven't hid in the bedroom for two weeks. I can sit down and write about it like this because this really is me. I'm not trying to be anything other than what I know I am right now. So I haven't found it all that hard to focus. OK. I'm sick. I already knew that. Take a deep breath and don't hurry. H
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Deceased
G'day Harker Yes that was what it was like for me when three and a half years after diagnosis and treatment the bloody thing recurred. There was not the same angst. I allowed myself to be quite emotional about it and I didn't tell people about it. Between the acknowledgment that it had returned and the experimental treatment I underwent was a period of nine months, on therapy designed to shrink things a bit, or at least hold things steady. During that time I lost ten kilos and had lots of emotional times. Second time around is quite different Take care Sailor The south and west winds joined, and as they blew Waves like a rolling trench before them threw. Sooner than you read this line, did the gale, Like shot, not feared till felt, our sails assail. John Donne
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Super Contributor
Hi Harker I am a huge fan of allowing myself to feel as I go along and just making sure that I don't stay in the yuck places for too long. By allowing myself to feel I often find that I am ready to come out quicker than if I fought the feelings. Good on you for not staying in the bedroom! Will you be able to do dialysis at home or does it mean going into hospital all the time? Julie
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Frequent Contributor
Hi Julie It seems the thing to do is start at the hospital and get good at it, then there are supports for taking a machine home after that. Only last evening I saw on the ABC News at story about the cost-effectiveness of home dialysis; $80,000pa in hospital compared to $30,000pa at home. It was a very good sign that there may be a smooth path for me here. Apparently there are lots of people developing diabetes related kidney failure because of their poor diets! H
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Super Contributor
Hiya Harker That is good that they will teach you how to do it at home. Much better to be able to do it there than having to travel into a hospital all the time. Did you know there is a really good website for kidney patients? I found it when I was doing volly work and creating a resource file for them. Let me know if you want the address and i can send it. Not sure if we are allowed to post sites on here or not, does anyone know? I remember it had some really good info on there for patients. Julie
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Regular Contributor
Hi Harker, As usual I continue to admire your strength and ability to deal with what life hands to you. Your writing is an inspiration - and I am by no means being cliched here. I hope that if I am presented with a reccurence I can face it with the same honesty and dignity. I am really pleased that you are able to talk with your wife as well. Keep us posted. Thinking of you, S
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Frequent Contributor
Thanks everyone Please post the link Jules2. It's a service for patients isn't it, not a treatment promotion? H
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Super Contributor
H Definitely a service for patients ... tip top website I thought. Has its own forum. It has a great section which gives information for patients on such things as diet, transport and dialysis about what help is available with transport costs and a lot more info on top of that. It is the kidney foundation site and is a non profit organisation and from what I can ascertain the links in the recommended website section are also good. www.kidney.org.au Julie
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Occasional Contributor
Dear Harker, Sorry for not reading this earlier - very slack of me. My father was on dialysis for the last 4 years of his life and at the age of (I think or about) 70 did 12 months - 24 months dialysis at home with a little help from his wife. He only went back to having it done in hospital when there was a unit opened in a hospital nearby. I think that the biggest problem that he had was that he was very good with his fluids intake - not more than meant to be - and once he started putting on muscle again, there was a bit of juggling with how much fluids in weight compared to muscle weight - that was how they calculated the time on dialysis. I think that home dialysis has come some way downt the path since then, I even heard them talking about patients doing it overnight and slower for a better outcome. So, to get to the point, well done with your attitude, and just think of this dialysis thing as another little hurdle - I am sure that you will. Take care of your wife too, I know that this must all be very hard for her as well. Take care of yourself, craftyone
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Contributor
i have to agree with the above msg.. think of this as another hurdle.. its so hard because you must be so tired and sick of bad news! a friend told me a true story of how a man was due to act in an reanactment of a tv show (true crime stories).. the man had in his head that when the fake gun shot at him he would get shot! he felt silly and thought for some reason he would actually get shot even though there were no bullets in it.. eventually he had to act out the crime scene and when the man pulled the gun out and shot at him, the actor died of a heart attack! beleive it or not the heart attack clearly showed that there was a bullet like mark on his chest... i guess what im trying to say is that the mind is a very powerful thing! believe what you want and dont listen to the negative things.. you can get through this! best of luck :)
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