Enjoyed a haircut on Friday, a fresh, invigorating feeling at a physical level, but empowering at an emotional level. Irrespective of whether the chemo will claim my locks, I WAS IN CHARGE - yeah! It was me controlling the decision to take off (some) of my hair. Off for round 3 tomorrow and ready for it. Cut/stacked wood with Marg on the weekend, enjoyed the fresh air and exercise. Have plans to build a strawberry patch this next weekend. Off to Hamer Hall (Arts Centre) in Melbourne tomorrow evening to listen to a group of accomplished musicians sing the Beatles White Album. Celebrating Marg's 50th (August 5th). Will enjoy some sushi beforehand, so the drugs had better behave themselves. Go well beautiful people (read Melanie Safka!!).
Blessings, Ray
Sunday, August 2, 2009
Friday, July 31, 2009
A few more diary entries from Ray:
25/7/09 Day 6/2. A lot better today. Off to soccer with Tahnee. Working as the linesman today - enjoying fresh air. How many people in the middle of chemotherapy run up and down a soccer pitch? Nausea easing.
26/7/09 Day 7/2. Sleep in. Out to lunch with friends. Enjoyed a glass of wine. Mouth and nostrils impr0ving.
27/7/09 Day 8/2. Seems to be a pattern in the 2nd week. Nausea improves, stomach settles. Flu like symptoms - runny nose, sore throat, cracked nasal passages.
28/7/09 Day 9/2. Same as yesterday. Nostrils quite sore. Throat easing, no nausea. Eating well. Enjoyed a good walk just before dark.
29/7/09. Day 10/2 Down to Melbourne all day - visiting chaplains. In great spirits. Flu like symptoms persisting. Drinking lots. Enjoyed great evening meal with a friend. Glass of wine.
30/7/09 Day 11/2. Flu like symptoms easing. Throat not as dry. Still eating very well. Drinking lots. Spirit good. Spent day in Kinglake interviewing.
31/7/09 Day 12/2. Flu like symptoms almost gone. Drinking lots still. Fitful sleep. Felt a little cold today - extra layer on. Ready for the next (3rd and final for this lot) round of chemo on Monday. Had a pleasant evening with Marg and the girls - went to the movies and then pizza.
Reading a profoundly moving account of the life of Treya Wilber, wife of Ken Wilber, a transpersonal philosopher. Treya succombed to metastatic breast cancer after a 5 year fight and the book records her journal with commentary by Ken. The book is called "Grace and Grit - Spirituality and Healing in the Life and Death of Treya Wilber". The book inspires me to reflect on an intriguing question about the difference between how we understand "illness" and "sickness"
Think of illness (in this context) as a medical or mental condition that is clinically diagnosed using a system or predetermined set of criteria and sickness as a description or cultural assumption about a person's medical condition. For example gout, an illness can be diagnosed as an inherited form of arthritis with an excess of uric acid in the blood, characterised by painful joint inflamation especially in the toe and thumb. No problems here. But gout as a sickness has stereotypes about it being a "rich person's disease and therefore one might deserve their condition if one overconsumes or lives the high life? Think of STD's or a mental illness such as schizophrenia and the cultural assumptions we might make about these as "sicknesses."
What are the cultural assumptions we might make about cancer (as a sickness)? I would value your comments and reflections. Be gutsy in your response.
25/7/09 Day 6/2. A lot better today. Off to soccer with Tahnee. Working as the linesman today - enjoying fresh air. How many people in the middle of chemotherapy run up and down a soccer pitch? Nausea easing.
26/7/09 Day 7/2. Sleep in. Out to lunch with friends. Enjoyed a glass of wine. Mouth and nostrils impr0ving.
27/7/09 Day 8/2. Seems to be a pattern in the 2nd week. Nausea improves, stomach settles. Flu like symptoms - runny nose, sore throat, cracked nasal passages.
28/7/09 Day 9/2. Same as yesterday. Nostrils quite sore. Throat easing, no nausea. Eating well. Enjoyed a good walk just before dark.
29/7/09. Day 10/2 Down to Melbourne all day - visiting chaplains. In great spirits. Flu like symptoms persisting. Drinking lots. Enjoyed great evening meal with a friend. Glass of wine.
30/7/09 Day 11/2. Flu like symptoms easing. Throat not as dry. Still eating very well. Drinking lots. Spirit good. Spent day in Kinglake interviewing.
31/7/09 Day 12/2. Flu like symptoms almost gone. Drinking lots still. Fitful sleep. Felt a little cold today - extra layer on. Ready for the next (3rd and final for this lot) round of chemo on Monday. Had a pleasant evening with Marg and the girls - went to the movies and then pizza.
Reading a profoundly moving account of the life of Treya Wilber, wife of Ken Wilber, a transpersonal philosopher. Treya succombed to metastatic breast cancer after a 5 year fight and the book records her journal with commentary by Ken. The book is called "Grace and Grit - Spirituality and Healing in the Life and Death of Treya Wilber". The book inspires me to reflect on an intriguing question about the difference between how we understand "illness" and "sickness"
Think of illness (in this context) as a medical or mental condition that is clinically diagnosed using a system or predetermined set of criteria and sickness as a description or cultural assumption about a person's medical condition. For example gout, an illness can be diagnosed as an inherited form of arthritis with an excess of uric acid in the blood, characterised by painful joint inflamation especially in the toe and thumb. No problems here. But gout as a sickness has stereotypes about it being a "rich person's disease and therefore one might deserve their condition if one overconsumes or lives the high life? Think of STD's or a mental illness such as schizophrenia and the cultural assumptions we might make about these as "sicknesses."
What are the cultural assumptions we might make about cancer (as a sickness)? I would value your comments and reflections. Be gutsy in your response.
Saturday, July 25, 2009
Dear Blog Followers. I have decided to put a short running sheet of how I’m feeling each day during my chemo treatment. It’s certainly not extensive and only gives an overview of how I’m feeling physically. Psychologically and spiritually, I am keeping well informed, praying, meditating and giving myself all those strong messages affirming my ability to work through my predicament. Thank you all from the bottom of my heart for all your messages of encouragement and prayers for healing. Blessings to you. Ray.
5/7/09. Begin my first lot of chemotherapy tomorrow. Off to Bendigo oncology. How do I feel? As if I am heading off to meet the executioner, having my last meal! Maybe that’s a little pessimistic? But it’s the uncertainty of it. So many people react differently it’s impossible to compare with other experiences. One thing is for sure – I am not going to take this lying down. I’m taking my camera with me tomorrow. I want to record something of my journey. Reading Jeff McClure in the Age yesterday – his amazing resilience. Here goes – let’s do this for me and for my family and for all those amazing caring individuals.
6/7/09. Picc line is in (peripherally inserted cardiac catheter) – waiting for an x-ray to make sure it is in the right position. This is another major invasion of my body post surgery. The medical staff is so supportive. After my x-ray, Marg and I went for a coffee – I found a dollar on the floor! A positive and encouraging sign (of good luck).
Talking with Anne, the nurse, who is administering the therapies today. She has been a nurse in oncology for 3 years and enjoys it. Her brother died 2 years ago from a melanoma so she is close to cancer and its effects. Asking her what she likes about working in oncology. She remarked that she admires the patients and their spirit. Their sense of resolve and patience.
I think people in situations like this are resigned to their circumstances and often feel a sense of compassion both to care and be cared for. There is a focal point in how people react to one another. I noticed how, in oncology, people are overtly courteous and caring. It was the same experience at Kinglake after the fires. People were aware of this enormous loss and threat and responded. People tend to be a little more open in sharing. Staff are practiced in the subtle and courageous act of pastoral care. With this experience, I feel less complacent, focused. My life may be short – will it be fulfilling??
Arrived home at 5.30pm – the drugs will have an affect over the next 2-5 days. Went home via a butcher’s. I felt like a steak and mashed spuds. Not sure if I will be wanting that later in the week so I thought I would get in early! No physical side affects yet, a slight headache. Feeling desperately positive and continuing to work with those inner resources. My blood pressure is really good – not feeling too anxious. I got a ‘care pack’ from a local support group today so I called them to thank them for their gift.
10.45pm Feeling the first real physical signs of the drugs. My stomach is gurgling and some pains as if I am ready to go to the toilet.
7/7/09.
Day 2. Took a while to get to sleep. The dexamethasone (anti nausea) is a steroid so probably the culprit. Slept well, no side effects yet. Toast and tea for breakfast. Have not been to the toilet for a sit down yet. Feeling pretty good.
8/7/09. Day 3. Well this morning. Took anti-nausea tablets as a precaution. Toast, tea, fruit juice for breakfast. Normal, full evening meals. Sleeping well.
9/7/09. Day 4. So far so good – slightly nauseous. Feels like minor travel sickness. Took anti-nausea tablets. Eating OK. Not feeling too tired. Had a sleep in until 11am. School holidays though! Had the fluorouracil bottle removed yesterday.
6pm. Nausea increasing, not drastically but enough to le me know it’s around. Will make an effort to eat my evening meal. Continuing with anti-nausea medication. Also feeling a little cold – an extra jumper will help.
10/7/09. Day 5. Feeling fine, nowhere near as nauseous as yesterday. Only feeling flat first thing in the morning. Great day. Eating well.
11/7/09. Day 6. Good day. No symptoms. Temperature normal.
12/7/09. Day 7. No symptoms. Slight headache, sniffly nose. Temp. normal. Little loose with bowels.
13/7/09. Day 8. Fine in the morning, woke well, no nausea. Had diarrhea in the evening. Took Laperimide and 2 hours later OK. District nurse changed dressing on Picc line in the afternoon. Slept well.
14/7/09. Day 9. Up well. No nausea, diarrhea gone. Ate good breakfast. Went for an hour’s walk.
15/7/09. Day 10. Great day. Good breakfast. No nausea. Hour’s walk. Slept fitfully.
16/7/09. Day 11. No side effects apart from a dry, “furry” mouth. Hours walk. All well.
17/7/09. Day 12. Furry mouth, dry throat. No other side effects.
18/7/09. Day 13. Furry mouth – feels like a mild throat infection, gargling regularly. Slight diarrhea. Took 2 Laparimide tablets.
19/7/09. Day 14. All well, good breakfast. Furry mouth, slightly sore throat, drinking lots of water. Good exercise today. Sleeping well. A little loose in the evening (bowels).
20/7/09. Second lot of chemo today. Came home feeling a little nauseous. Felt a lot better after eating my evening meal. Sending positive messages to myself (bio-feed back). Relying on the chemical therapies and positive internal messages. I know the reasons for the nausea, so I must overcome those messages relating nausea to food. “Keep on eating no matter what”. It’s not the food that is the cause. Slight blurring of eyesight. Looks as though the centre of my cornea is blurred. Scratchy eyes too.
21/7/09. Day 2/2. Found it hard to sleep last night. One of the positive spin offs was that I read my book for longer than 10 minutes without falling asleep! Dry lips and mild sore throat. Tummy rumbling. Lay in bed last night meditating – eventually succumbed to sleep around 2.30pm.
22/7/09. Day 3/2. Great start to the day. Slept hot in bed – cooled down quickly. Blurry vision cleared. Took 2 Dexamethasone – no nausea, healthy breakfast. A little constipated but cleared around 3.30pm. Face flushed and splotchy in the early evening. Drinking lots of water. My voice is soft, almost like I’m losing my voice. Temp. 35.9deg C.
Met a chap in oncology on Monday. He has cancer of the oesophagus diagnosed 4 months ago and has not managed to eat solids for all that time. He has extreme nausea. On top of this he is a diabetic too. Made me think that even though I am in an extremely difficult situation, someone else is facing an even tougher challenge.
23/7/09. Day 4/2. Slightly nauseous. Eating OK. Took anti-nausea tablet. Walked an hour. Slept well. Great relaxed evening with family.
24/7/09. Day 5/2. Woke up well – took an anti-nausea tablet x 3 today. Felt pretty flat today. Loose bowels, drugs helped quickly. Lunch with friends. Felt lethargic after 3pm. Had commitments this evening but cancelled. Reached a 2 out of 10 for nausea for first time. Hopefully improvement tomorrow. One of the side effects can be mouth ulcers, so far so good although my nasal passages feel cracked and sore. Eyes have lost their scratchiness. Still feeling strong in spirit and very determined.
5/7/09. Begin my first lot of chemotherapy tomorrow. Off to Bendigo oncology. How do I feel? As if I am heading off to meet the executioner, having my last meal! Maybe that’s a little pessimistic? But it’s the uncertainty of it. So many people react differently it’s impossible to compare with other experiences. One thing is for sure – I am not going to take this lying down. I’m taking my camera with me tomorrow. I want to record something of my journey. Reading Jeff McClure in the Age yesterday – his amazing resilience. Here goes – let’s do this for me and for my family and for all those amazing caring individuals.
6/7/09. Picc line is in (peripherally inserted cardiac catheter) – waiting for an x-ray to make sure it is in the right position. This is another major invasion of my body post surgery. The medical staff is so supportive. After my x-ray, Marg and I went for a coffee – I found a dollar on the floor! A positive and encouraging sign (of good luck).
Talking with Anne, the nurse, who is administering the therapies today. She has been a nurse in oncology for 3 years and enjoys it. Her brother died 2 years ago from a melanoma so she is close to cancer and its effects. Asking her what she likes about working in oncology. She remarked that she admires the patients and their spirit. Their sense of resolve and patience.
I think people in situations like this are resigned to their circumstances and often feel a sense of compassion both to care and be cared for. There is a focal point in how people react to one another. I noticed how, in oncology, people are overtly courteous and caring. It was the same experience at Kinglake after the fires. People were aware of this enormous loss and threat and responded. People tend to be a little more open in sharing. Staff are practiced in the subtle and courageous act of pastoral care. With this experience, I feel less complacent, focused. My life may be short – will it be fulfilling??
Arrived home at 5.30pm – the drugs will have an affect over the next 2-5 days. Went home via a butcher’s. I felt like a steak and mashed spuds. Not sure if I will be wanting that later in the week so I thought I would get in early! No physical side affects yet, a slight headache. Feeling desperately positive and continuing to work with those inner resources. My blood pressure is really good – not feeling too anxious. I got a ‘care pack’ from a local support group today so I called them to thank them for their gift.
10.45pm Feeling the first real physical signs of the drugs. My stomach is gurgling and some pains as if I am ready to go to the toilet.
7/7/09.
Day 2. Took a while to get to sleep. The dexamethasone (anti nausea) is a steroid so probably the culprit. Slept well, no side effects yet. Toast and tea for breakfast. Have not been to the toilet for a sit down yet. Feeling pretty good.
8/7/09. Day 3. Well this morning. Took anti-nausea tablets as a precaution. Toast, tea, fruit juice for breakfast. Normal, full evening meals. Sleeping well.
9/7/09. Day 4. So far so good – slightly nauseous. Feels like minor travel sickness. Took anti-nausea tablets. Eating OK. Not feeling too tired. Had a sleep in until 11am. School holidays though! Had the fluorouracil bottle removed yesterday.
6pm. Nausea increasing, not drastically but enough to le me know it’s around. Will make an effort to eat my evening meal. Continuing with anti-nausea medication. Also feeling a little cold – an extra jumper will help.
10/7/09. Day 5. Feeling fine, nowhere near as nauseous as yesterday. Only feeling flat first thing in the morning. Great day. Eating well.
11/7/09. Day 6. Good day. No symptoms. Temperature normal.
12/7/09. Day 7. No symptoms. Slight headache, sniffly nose. Temp. normal. Little loose with bowels.
13/7/09. Day 8. Fine in the morning, woke well, no nausea. Had diarrhea in the evening. Took Laperimide and 2 hours later OK. District nurse changed dressing on Picc line in the afternoon. Slept well.
14/7/09. Day 9. Up well. No nausea, diarrhea gone. Ate good breakfast. Went for an hour’s walk.
15/7/09. Day 10. Great day. Good breakfast. No nausea. Hour’s walk. Slept fitfully.
16/7/09. Day 11. No side effects apart from a dry, “furry” mouth. Hours walk. All well.
17/7/09. Day 12. Furry mouth, dry throat. No other side effects.
18/7/09. Day 13. Furry mouth – feels like a mild throat infection, gargling regularly. Slight diarrhea. Took 2 Laparimide tablets.
19/7/09. Day 14. All well, good breakfast. Furry mouth, slightly sore throat, drinking lots of water. Good exercise today. Sleeping well. A little loose in the evening (bowels).
20/7/09. Second lot of chemo today. Came home feeling a little nauseous. Felt a lot better after eating my evening meal. Sending positive messages to myself (bio-feed back). Relying on the chemical therapies and positive internal messages. I know the reasons for the nausea, so I must overcome those messages relating nausea to food. “Keep on eating no matter what”. It’s not the food that is the cause. Slight blurring of eyesight. Looks as though the centre of my cornea is blurred. Scratchy eyes too.
21/7/09. Day 2/2. Found it hard to sleep last night. One of the positive spin offs was that I read my book for longer than 10 minutes without falling asleep! Dry lips and mild sore throat. Tummy rumbling. Lay in bed last night meditating – eventually succumbed to sleep around 2.30pm.
22/7/09. Day 3/2. Great start to the day. Slept hot in bed – cooled down quickly. Blurry vision cleared. Took 2 Dexamethasone – no nausea, healthy breakfast. A little constipated but cleared around 3.30pm. Face flushed and splotchy in the early evening. Drinking lots of water. My voice is soft, almost like I’m losing my voice. Temp. 35.9deg C.
Met a chap in oncology on Monday. He has cancer of the oesophagus diagnosed 4 months ago and has not managed to eat solids for all that time. He has extreme nausea. On top of this he is a diabetic too. Made me think that even though I am in an extremely difficult situation, someone else is facing an even tougher challenge.
23/7/09. Day 4/2. Slightly nauseous. Eating OK. Took anti-nausea tablet. Walked an hour. Slept well. Great relaxed evening with family.
24/7/09. Day 5/2. Woke up well – took an anti-nausea tablet x 3 today. Felt pretty flat today. Loose bowels, drugs helped quickly. Lunch with friends. Felt lethargic after 3pm. Had commitments this evening but cancelled. Reached a 2 out of 10 for nausea for first time. Hopefully improvement tomorrow. One of the side effects can be mouth ulcers, so far so good although my nasal passages feel cracked and sore. Eyes have lost their scratchiness. Still feeling strong in spirit and very determined.
Wednesday, July 8, 2009
Ray's first chemo session on Monday went well. A long day - we arrived at 9.30am and didn't leave until 5.30pm. A pic line had to be inserted into a vein in Ray's upper arm and then x-rayed to make sure it was in the right place before the chemo could start. The pic line will stay in place for the whole 6 weeks of the 3 chemo treatments. Anti-nausea and anti-diahrea drugs were then dripped into this line before the actual chemo drugs (2 of them) could be administered. As this was the first treatment, they were dripped in slowly to make sure Ray didn't have any bad reactions. The next chemo session in 2 weeks time will only take two hours.
So far Ray has only experienced slight nausea, but we realise it's early days yet.
A video message from Ray below - sorry it's not pointed the right way, will get that right next time.
So far Ray has only experienced slight nausea, but we realise it's early days yet.
A video message from Ray below - sorry it's not pointed the right way, will get that right next time.
Tuesday, June 16, 2009
After a bit of too-ing and fro-ing we finally have a date for Ray starting chemo treatment - it's Monday 6th July and will last for 6 weeks. Your thoughts and prayers for him leading up to and during this time would, once again, be very much appreciated.
The second clinical trial we were considering is still an option, however, after much discussion with his Bendigo oncologist Ray decided to start chemo with him. The chemo will include the drug Avastin which was going to be used in the first clinical trial that fell through. This drug is now being made available, as from 1st July.
In the meantime, Ray is going over to Perth to visit Andrew (his son) and spend some father-son time catching up and doing some fishing together.
Ray is still feeling well. His blood and liver function tests last week were all in the 'normal' range and he has even gained 3kg! This is great news as it means he starts the chemo treatments in the best possible condition.
Our love and best wishes to everyone.
Ray, Marg, Tahnee & Marli
The second clinical trial we were considering is still an option, however, after much discussion with his Bendigo oncologist Ray decided to start chemo with him. The chemo will include the drug Avastin which was going to be used in the first clinical trial that fell through. This drug is now being made available, as from 1st July.
In the meantime, Ray is going over to Perth to visit Andrew (his son) and spend some father-son time catching up and doing some fishing together.
Ray is still feeling well. His blood and liver function tests last week were all in the 'normal' range and he has even gained 3kg! This is great news as it means he starts the chemo treatments in the best possible condition.
Our love and best wishes to everyone.
Ray, Marg, Tahnee & Marli
Monday, June 1, 2009
Again it's been a while since I posted anything, and again because not a lot has been happening. While we have been waiting for the clinical trial to come up, life has been so normal, I could almost believe the whole horrible "Big C" thing isn't happening to us.
Apart from still feeling the tumors as "stinging stitches" now and then, Ray is looking and feeling well otherwise. The girls are happy and very involved in their school and social lives. Tahnee turned 13 last weekend and had a fantastic birthday party down at the Barkers Creek Cricket Hall with 26 of her friends. Marli is becoming a "Master Chef" honing her skills at making delicious cupcakes for her Saturday market stall.
We heard last week that the original clinical trial Ray was hoping to get on, doesn't look like it will be going ahead. Ray has had lengthy discussions with Mark, our Bendigo oncologist, and they have come up with some alternative courses of action. At the moment we are looking at another clinical trial which is being done at Western General Hospital in Footscray. An appointment is being made for Ray to see the doctor there the week after next. Will keep you posted on the outcome.
Best wishes to everyone. Hope you are all well, happy and enjoying and appreciating life!
Marg.
Apart from still feeling the tumors as "stinging stitches" now and then, Ray is looking and feeling well otherwise. The girls are happy and very involved in their school and social lives. Tahnee turned 13 last weekend and had a fantastic birthday party down at the Barkers Creek Cricket Hall with 26 of her friends. Marli is becoming a "Master Chef" honing her skills at making delicious cupcakes for her Saturday market stall.
We heard last week that the original clinical trial Ray was hoping to get on, doesn't look like it will be going ahead. Ray has had lengthy discussions with Mark, our Bendigo oncologist, and they have come up with some alternative courses of action. At the moment we are looking at another clinical trial which is being done at Western General Hospital in Footscray. An appointment is being made for Ray to see the doctor there the week after next. Will keep you posted on the outcome.
Best wishes to everyone. Hope you are all well, happy and enjoying and appreciating life!
Marg.
Tuesday, May 5, 2009
Ray has started to feel the tumors in his liver - a sensation he describes like having a 'stitch'. We thought he might need to start chemo this week, but as the pain is minor and Ray is sleeping and feeling well otherwise, Dr Warren feels it will be better for him to wait until the new clinical trial starts. This won't be for another 4-5 weeks so in the meantime, Ray is having a liver functioning blood test to check that it is OK to wait this long. Unfortunately, if Ray starts chemo in Bendigo, he won't be able to do the clinical trial at Peter Mac in Melbourne which will hopefully give him a better mix of drugs! Please keep your prayers, thoughts and positive vibes going for Ray.
Marg
Feeling in good spirits. Journaling, meditating, juicing, practising guided imagery, reading and practising a wholistic approach to my healthcare. Having a red-hot go at disproving the statistics for longevity! Hope you are all well. Please feel free to contact me in whatever way you feel is appropriate.
Blessings to you all.
Ray
Marg
Feeling in good spirits. Journaling, meditating, juicing, practising guided imagery, reading and practising a wholistic approach to my healthcare. Having a red-hot go at disproving the statistics for longevity! Hope you are all well. Please feel free to contact me in whatever way you feel is appropriate.
Blessings to you all.
Ray
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