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Pharynx- Esophagus Junction Dilations

11 May 2013 - 06:46

In 2012, I developed Radiation Induced Fibrosis (RIF) or Radiation Fibrosis Syndrome (RFS), more specifically sudden Late Onset Radiation Induced Fibrosis; Velopharyngeal Incompetence & Severe Dysphagia (fibrosis from the Soft Palate down to the Upper Esophageal Sphincter, inclusive).

My Current Treatment: SLP exercises, "Smooth Pureed" diet plus Resource Plus medical drinks and Pentoxifylline & Tocopherol (Vitamin E) antioxidant therapy.

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Late Onset Radiation Induced Dysphasia

11 May 2013 - 06:39

In 2012, I developed Radiation Induced Fibrosis (RIF) or Radiation Fibrosis Syndrome (RFS), more specifically sudden Late Onset Radiation Induced Fibrosis; Velopharyngeal Incompetence & Severe Dysphagia (fibrosis from the Soft Palate down to the Upper Esophageal Sphincter, inclusive).

My Current Treatment: SLP exercises, "Smooth Pureed" diet plus Resource Plus medical drinks and Pentoxifylline & Tocopherol (Vitamin E) antioxidant therapy.

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feeling better about things

9 May 2013 - 14:45

Today I am feeling much better about the things that are going on in my life. Its amazing how much a little information can make all the difference. Only a couple of days ago I was wondering how I would ever get through Darryn having melanoma. Today I feel bad with my own health issues but I feel much better than I have in a long time. We went to Darryn's G.P. that he saw up on the sunshine coast where we used to live because He trusts him and wanted him to explain things that we were worrying about.

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Carers are love

9 May 2013 - 11:26

Love suffers long and is kind; love does not parade itself, is not puffed up; does not behave rudely, does not seek its own, is not provoked, thinks no evil; bears all things, believes all things,hopes all things, endures all things. Love never fails.

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Taste

7 May 2013 - 14:53

I am 3 and half months post radiation and in the past week my taste buds have gone nuts, all i can taste is salt i don't need to add salt to anything which i never did, but everything is really salty even tea tastes salty, is there something i can take to make my saliva not so salty, if anyone knows please it is driving me nuts.

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Confusion

7 May 2013 - 13:46

Yesterday my boyfriend went for a skin check and they didn't find any sign of a melanoma at all, nothing at all on his whole body. But he saw on the file the skin specialist was writing in that he had put down stage 4 melanoma. This got him worrying that he was going to die and he came home and got onto the Internet and googled stage 4 melanoma. Now he thinks the worst of course and thinks he hasn't got long to live. This upset me enough for me to ring the cancer helpline to ask about it. The guy on there was very good and eased my mind very much.

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What are people thinkink

6 May 2013 - 13:02

My husband has started treatment for lung cancer, he has never smoked its a form of cancer normally young Asian woman get. It's hard to watch a person who was always very active not be able to do much. People have generally been very good with their positive comment and wishes. And we are trying to stay positive and retain a sense of humour. I had someone ask me the other day what his life expectancy was, I didn't know how to answer, I thought it was the crappiest thing to ask. I don't even want to ask the doctor that. I would rather people ring and be positive.

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another bad day

4 May 2013 - 15:45

Today I am having another bad day. Darryn woke up with a headache this morning and is in a bad mood. I don't seem to be able to cope with it when he gets like this and it seems he is more often in a bad mood more often that not these days. I know he has a lot of worry and I should be able to support him on these days. Why can't I keep it together for him. I think its because I have had so much sadness in my life and my health is not very good these days with having fibromyalgia, arthritis and constant pain in my neck.

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Counselling

3 May 2013 - 22:59

I went to counselling a few days ago for the first time in about 5 months. I'm not quite sure why I went back. I have been thinking about it for a number of weeks and I finally decided to get on with it and actually go.

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2013 so far

2 May 2013 - 11:45

Last blog entry took me up to where I finished my last clinical trial in December 2012. So, since then.......

Over the Christmas period I had, for the first time, a lot of issues with pain management. Prior to that all my symptoms for the past 4 years related to treatment, rather than the cancer itself. So we spent most of January getting the pain under control, finally settling on 20mg OxyContin morning and night. I have no idea whether this is a small or a large dose - but it worked.

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