My doctor has finally got on top of my pain management and together with the radiation treatment my quality of life has improved dramatically since my last blog.
Eating fairly well - lots of small meals and sleeping reasonably well as most of the medicines are sedating. Spending my days reading, journalling, keeping in touch with family, enjoying my garden and resting. The weather is so beautiful at this time of the year and I'm able to sit outside on the decking and enjoy it!
It has been sensational having my son Andrew here from Perth. The last two evenings it has just been the 5 of us. Andrew has been working hard in my garden and cleaning out our shed - a job I had been planning to get around to for over 10 years.
Working towards small goals i.e. Marli's birthday on the 12th, our 20th wedding anniversary on the 14th and then Christmas.
The Palliative Care Nurses have also organised a wheelchair for me so I will be able to get out now and then. Used it last Saturday night to go down to our local Botanic Gardens with the family.
Thanks sincerely to all of you who read the blog and send prayers, best wishes and positive vibes out to me.
Tuesday, December 6, 2011
Monday, November 28, 2011
Last Friday I had a burst of palliative radiation that today (Monday) I can feel the positive affects of. The treatment has relieved major pressure of the tumor on my sacrum which carries nerves running down my left leg. Today, even though I am still fairly tired, the pain level is at zero - which is worth it's weight in gold. I even managed 10 minutes in the garden this morning, watering some pot plants - the first time I have been out of the house for 10 days (apart from the 2 trips to Bendigo Radiology).
Marg has stopped working now, and is staying home to care for me. My mum, Sheila, was also up last week to help out and do what mothers do best.
My son, Andrew, arrived from Perth this morning. It was quite an emotional reunion and it is wonderful to have him here.
A good friend of mine, Gordon, sent me a poem he wrote last week when my condition was quite serious. I want to share it with you all.
And I don't know .... anything!
Except, outside the sun is setting
And my friend is dying
And there is the white noise, Ray
The hush over the rhythm of the music,
We are the white noise behind it all
And outside the sun is setting
And young girls dancing,
And Life and Love and Music
And the music is white
And beautiful
And outside
The sun is setting.
Every day now is a day to be celebrated. Blessings to you all. Ray.
Marg has stopped working now, and is staying home to care for me. My mum, Sheila, was also up last week to help out and do what mothers do best.
My son, Andrew, arrived from Perth this morning. It was quite an emotional reunion and it is wonderful to have him here.
A good friend of mine, Gordon, sent me a poem he wrote last week when my condition was quite serious. I want to share it with you all.
And I don't know .... anything!
Except, outside the sun is setting
And my friend is dying
And there is the white noise, Ray
The hush over the rhythm of the music,
We are the white noise behind it all
And outside the sun is setting
And young girls dancing,
And Life and Love and Music
And the music is white
And beautiful
And outside
The sun is setting.
Every day now is a day to be celebrated. Blessings to you all. Ray.
Wednesday, November 23, 2011
Unfortunately things have taken a turn for the worse. Last weekend I was quite sick with nausea and extreme pain, both which I couldn't seem to get under control.
My doctor has since prescribed a new level of pain management and anti-nausea relief. Taking my medication on a strict regime for the last 48 hours and things seem to be reasonably under control again.
The tumor in my sacrum (groin) is also compressing a large bunch of nerves - referring intense pain down my left leg and leaving me with a constant feeling of pins and needles - making it hard to walk. I certainly can't drive my car any more.
My doctor has referred me for some palliative radiotherapy for the sacrum tumor which will hopefully alleviate some of this pain.
I am reconciling the loss of my freedom - spending my days now lying on a mattress in the lounge room looking out at the bush surrounding our house when I'm not sleeping (which is a side affect of the stronger pain medication).
Marg and I receive graciously the way all of you are sending your love and prayers in many varied and different ways.
My doctor has since prescribed a new level of pain management and anti-nausea relief. Taking my medication on a strict regime for the last 48 hours and things seem to be reasonably under control again.
The tumor in my sacrum (groin) is also compressing a large bunch of nerves - referring intense pain down my left leg and leaving me with a constant feeling of pins and needles - making it hard to walk. I certainly can't drive my car any more.
My doctor has referred me for some palliative radiotherapy for the sacrum tumor which will hopefully alleviate some of this pain.
I am reconciling the loss of my freedom - spending my days now lying on a mattress in the lounge room looking out at the bush surrounding our house when I'm not sleeping (which is a side affect of the stronger pain medication).
Marg and I receive graciously the way all of you are sending your love and prayers in many varied and different ways.
Tuesday, November 15, 2011
Dear Blog Readers
October has seen quite a change in my medical/physical condition. I started vomiting and dry retching, even though I was taking anti-nausea tablets. I have changed my diet and am eating very small amounts, but regularly and am now managing to keep my food down most of the time and only dry retching once or twice a day. I have lost around 6kgs.
I had a CT scan today and the scan confirmed what I had thought, that the liver is chock full of tumors and is slowly breaking down. One of the reasons for me being sick and nauseous has been the liver's inability to metabolise the bile salts in my body. The bile salts have been displaced into the pores of my skin, also making me extremely itchy. This seems to have moderated somewhat in the last week since I have been taking anti-histamines.
The last two weeks, I have had increasing pain in my buttock - of all places. The CT scan also confirmed I have a tumor in my sacrum. My GP has upped my medication to a slow release pain killer and that is helping.
My spirit is strong and I am still as cheeky as ever, stirring up the family at every opportunity! My days are spent doing very light duties in the morning and resting and reading in the afternoon.
Blessings to you all
Ray
October has seen quite a change in my medical/physical condition. I started vomiting and dry retching, even though I was taking anti-nausea tablets. I have changed my diet and am eating very small amounts, but regularly and am now managing to keep my food down most of the time and only dry retching once or twice a day. I have lost around 6kgs.
I had a CT scan today and the scan confirmed what I had thought, that the liver is chock full of tumors and is slowly breaking down. One of the reasons for me being sick and nauseous has been the liver's inability to metabolise the bile salts in my body. The bile salts have been displaced into the pores of my skin, also making me extremely itchy. This seems to have moderated somewhat in the last week since I have been taking anti-histamines.
The last two weeks, I have had increasing pain in my buttock - of all places. The CT scan also confirmed I have a tumor in my sacrum. My GP has upped my medication to a slow release pain killer and that is helping.
My spirit is strong and I am still as cheeky as ever, stirring up the family at every opportunity! My days are spent doing very light duties in the morning and resting and reading in the afternoon.
Blessings to you all
Ray
Sunday, October 9, 2011
Enjoyed a Spring Celebration on Saturday 24th September at the Barkers Creek Cricket Oval with 120 family and friends. We planned the day to celebrate Spring, life in all its fullness and in some ways it was my "Awake". I wanted to be a part of celebrating my life with the people who have encouraged and nurtured me over the years. Some friends and family were sorely missed, but they were with us in spirit. The day was filled with creative expression via music, art, poetry and good food.
My physical condition has deteriorated in the past couple of weeks. I am still able to get around the house, drive around to do errands etc. but have more of a wish to stay close to home and spend a lot of time resting on the couch. Pain levels have gone up although managed with medication. It is taking a while to moderate my nausea levels. I have 3 lots of anti-nausea medication. Each day is a new day. Can't let the physical side of my illness overpower me. I'm reading a lot, still catching up with good friends and grabbing the occasional shiatsu massage and gentle swim. Also listening to music is a great pleasure. I have enjoyed a couple of retrospective days playing my old vinyl LP's and have almost completed my biography.
It's been great having the girls around during the school holidays, watching them enjoying time with their friends. Enjoyed my birthday on 4th October with an evening meal with just the 4 of us at a local pub. Reaching 58 - another milestone passed. Marg and the girls have been very supportive and are aware of me needing spaces to rest. I'm keeping in touch with Palliative Care fortnightly. Although I only look one or two days ahead now, I am anticipating Marg and I celebrating our 20th wedding anniversary on 14th December.
Love to all and again your prayers and thoughts are much appreciated.
Ray
My physical condition has deteriorated in the past couple of weeks. I am still able to get around the house, drive around to do errands etc. but have more of a wish to stay close to home and spend a lot of time resting on the couch. Pain levels have gone up although managed with medication. It is taking a while to moderate my nausea levels. I have 3 lots of anti-nausea medication. Each day is a new day. Can't let the physical side of my illness overpower me. I'm reading a lot, still catching up with good friends and grabbing the occasional shiatsu massage and gentle swim. Also listening to music is a great pleasure. I have enjoyed a couple of retrospective days playing my old vinyl LP's and have almost completed my biography.
It's been great having the girls around during the school holidays, watching them enjoying time with their friends. Enjoyed my birthday on 4th October with an evening meal with just the 4 of us at a local pub. Reaching 58 - another milestone passed. Marg and the girls have been very supportive and are aware of me needing spaces to rest. I'm keeping in touch with Palliative Care fortnightly. Although I only look one or two days ahead now, I am anticipating Marg and I celebrating our 20th wedding anniversary on 14th December.
Love to all and again your prayers and thoughts are much appreciated.
Ray
Monday, September 5, 2011
Had been feeling really well since my last blog, however things took a slight turn for the worse last Wednesday around lunch time. I felt faint and nauseous and headed off to the doctors for treatment. The nausea settled, but on Thursday pain levels increased in my chest and abdomen area. Taking maxalon tablets for the nausea and off to the doctors again tomorrow to look at pain management. I am breathing shallowly to minimise the pain in my chest however, it's not stopping me from spending time in the garden and continuing with volunteer work at the school and hospital.
Enjoyed a wonderful weekend with Marg after dropping Tahnee and Marli off at the airport to go to Perth to spend a week with their brother Andrew.
We continued onto Melbourne, staying in an apartment in Little Bourke Street in Chinatown for 2 nights. We enjoyed the Vic Markets, a movie at the Nova and the Tim Winton play "Rising Water" at the Playhouse and then dinner with friends on Saturday evening.
You would have been proud of us on Sunday morning reading the Sunday papers in bed and enjoying a large fruit platter before heading off to St. Paul's Cathedral for a choral communion service.
Faith still strong and determined and I have a walk planned with some friends this Friday and hopefully going to the West Coast/Collingwood game at the MCG on Saturday before picking the girls and Andrew up on Saturday night.
Thank you all for your kind and generous remarks and ongoing support of thoughts and prayers. They are very much appreciated.
Ray
Enjoyed a wonderful weekend with Marg after dropping Tahnee and Marli off at the airport to go to Perth to spend a week with their brother Andrew.
We continued onto Melbourne, staying in an apartment in Little Bourke Street in Chinatown for 2 nights. We enjoyed the Vic Markets, a movie at the Nova and the Tim Winton play "Rising Water" at the Playhouse and then dinner with friends on Saturday evening.
You would have been proud of us on Sunday morning reading the Sunday papers in bed and enjoying a large fruit platter before heading off to St. Paul's Cathedral for a choral communion service.
Faith still strong and determined and I have a walk planned with some friends this Friday and hopefully going to the West Coast/Collingwood game at the MCG on Saturday before picking the girls and Andrew up on Saturday night.
Thank you all for your kind and generous remarks and ongoing support of thoughts and prayers. They are very much appreciated.
Ray
Friday, August 5, 2011
Each day now is in some ways a hurdle to be leaped. Slowly and grudingly coming to terms with a shortened life. I have lost any focus on the future and am more concerned about each day's events, embracing that cliche "to live in the moment". Although saying that, two future dates I am looking forward to is December 14th - our 20th wedding anniversary and Christmas day with family.
I am feeling some soreness in my stomach - a bit like a stitch or digestive pain - and continuous very low nausea, but my resilience is strong and my faith remains active and alive and nurturing. I continue to see my supervisor and I'm enjoying a book club and my continuing relationship with men's group.
Also managing to do some volunteer work (2 hours a week) at the girl's secondary college supporting the welfare team, running a small program with half a dozen middle school boys. Also start delivering library books to hostel residents at the hospital next week. Can't keep me down!
My family continue to support me and cajole me in the never ending energy sapping experience of raising teenage children. Family life is great with sport, markets, school etc. etc. The girls are off to visit their brother in Perth in early September for a week. They want a week with their brother without parents, which frees Marg and I up to have some time together.
Continuing to write my biolography and I've taken an interest in my family's geneology. Continued support from close friends is sustaining.
Again thanks to all of you for your ongoing prayers and support.
Blessings
Ray
I am feeling some soreness in my stomach - a bit like a stitch or digestive pain - and continuous very low nausea, but my resilience is strong and my faith remains active and alive and nurturing. I continue to see my supervisor and I'm enjoying a book club and my continuing relationship with men's group.
Also managing to do some volunteer work (2 hours a week) at the girl's secondary college supporting the welfare team, running a small program with half a dozen middle school boys. Also start delivering library books to hostel residents at the hospital next week. Can't keep me down!
My family continue to support me and cajole me in the never ending energy sapping experience of raising teenage children. Family life is great with sport, markets, school etc. etc. The girls are off to visit their brother in Perth in early September for a week. They want a week with their brother without parents, which frees Marg and I up to have some time together.
Continuing to write my biolography and I've taken an interest in my family's geneology. Continued support from close friends is sustaining.
Again thanks to all of you for your ongoing prayers and support.
Blessings
Ray
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