It's that fuzzy head!!! I just reread the last entry I made which referred to the POWERtalk Convention being held in Hawaii this July. Silly me! I know it's not until 2013. Maybe I'll get there then - hard to forecast that far ahead. But, don't worry, I won't stop off in Hawaii this July expecting to see all your cheery familiar faces.
Pain management guru came today and started me on a reduction of mind-numbing drugs. Phew!
Talk soon :)
Wednesday, March 21, 2012
Monday, March 19, 2012
The fatigue. The Hopemobile. A new baby coming. A new house in Atlanta, USA
Wow! This fatigue from radiotherapy really is strong. But then, some say that all the pain killing medication I'm on will also make me feel bleary, zonked out and hardly able to get off the couch.
I know that in my last entry I said that the dexamethasone was helping me feel more chipper. And it has - for a while - I've had energy in the mornings and then flopped on the couch or into bed in the afternoons.
ANYWAY - that is all about to be remedied, I hope. Yesterday was a good start. It was time to go see the oncologist and to hear the results of the blood test I had last week. The blood test revealed that one of the tumour markers was well down to the normal range (Yeah!) but the other was up (Boo!). The dear doctor prefers to rely on the first reading and was very happy and congratulated me on how well I looked and how well I was according to the results. My liver function has improved and all else is in order.
He had a feel of my tummy, as he always does, and we discussed the tumour that has been sitting on my left side, bulging and making me uncomfortable while not actually growing or causing pain. He says it needs a little message to stay at the size it is, so he recommended that I restart oral chemotherapy in small doses to send that message. I've taken it before and it really doesn't have a noticeable effect on my lifestyle.
He also noticed how spaced out I seemed to be compared with my usual sharp, chirpy self and suggested I consult with the pain management doctor about reducing some of those drugs. When he saw the list of drugs I was on he was surprised at the strength. He expects the effects of the radiotherapy to start taking effect soon. So.... on my arrival home, after an icecream at the beach with my trusty off-sider, Roslyn, I called the pain management man and after brief discussion he agreed that I should come off some of them and that he will call in tomorrow to discuss, review and amend dosages. I love that he will come to me and I don't need to go and sit in a waiting room to see him.
All good news conspires to make you feel better. My son's new baby is due to be born in Brisbane on 12 April - very soon. My daughter and her husband have bought a house in Atalanta, Georgia, USA and are moving there, from Durban, South Africa, in June.
Maybe I'll make it to the POWERtalk Convention in Hawaii in July on my way to visit them in Atlanta.
And I've asked my dear friend, Grahame, who cares for the Hopemobile for me when I'm not careering around the coutryside in it, to take it out of moth balls because I plan to set off in early April, heading west and then north and then east again, so that I can be in Brisbane for the arrival of the baby.
Right now I'm sitting up in bad with tea and toast, writing to you and ready to face a new day. It's 7am on Tuesday 20 March here in Wollongong, Australia.
Enjoy your day. I'm looking froward to lunch with two lovely friends.
I know that in my last entry I said that the dexamethasone was helping me feel more chipper. And it has - for a while - I've had energy in the mornings and then flopped on the couch or into bed in the afternoons.
ANYWAY - that is all about to be remedied, I hope. Yesterday was a good start. It was time to go see the oncologist and to hear the results of the blood test I had last week. The blood test revealed that one of the tumour markers was well down to the normal range (Yeah!) but the other was up (Boo!). The dear doctor prefers to rely on the first reading and was very happy and congratulated me on how well I looked and how well I was according to the results. My liver function has improved and all else is in order.
He had a feel of my tummy, as he always does, and we discussed the tumour that has been sitting on my left side, bulging and making me uncomfortable while not actually growing or causing pain. He says it needs a little message to stay at the size it is, so he recommended that I restart oral chemotherapy in small doses to send that message. I've taken it before and it really doesn't have a noticeable effect on my lifestyle.
He also noticed how spaced out I seemed to be compared with my usual sharp, chirpy self and suggested I consult with the pain management doctor about reducing some of those drugs. When he saw the list of drugs I was on he was surprised at the strength. He expects the effects of the radiotherapy to start taking effect soon. So.... on my arrival home, after an icecream at the beach with my trusty off-sider, Roslyn, I called the pain management man and after brief discussion he agreed that I should come off some of them and that he will call in tomorrow to discuss, review and amend dosages. I love that he will come to me and I don't need to go and sit in a waiting room to see him.
All good news conspires to make you feel better. My son's new baby is due to be born in Brisbane on 12 April - very soon. My daughter and her husband have bought a house in Atalanta, Georgia, USA and are moving there, from Durban, South Africa, in June.
Maybe I'll make it to the POWERtalk Convention in Hawaii in July on my way to visit them in Atlanta.
And I've asked my dear friend, Grahame, who cares for the Hopemobile for me when I'm not careering around the coutryside in it, to take it out of moth balls because I plan to set off in early April, heading west and then north and then east again, so that I can be in Brisbane for the arrival of the baby.
Right now I'm sitting up in bad with tea and toast, writing to you and ready to face a new day. It's 7am on Tuesday 20 March here in Wollongong, Australia.
Enjoy your day. I'm looking froward to lunch with two lovely friends.
Friday, March 9, 2012
Last day of Radiotherapy Treatment today!
Yep. It's all over. 20 doses of radiation directly to the tumour that has caused excruciating pain in my left pelvic area and down the left leg to the knee. The pain has been masked for the past few weeks while the medicos worked on a combination of pain management medication. I have been pain free for quite a few weeks, still am, but there's really no way of knowing whether it's the medication or the radiotherapy - or both - that have contributed to this. I'm sure it was the medication to begin with, but now the radiotherapy treatment has finished and the results will not be known for at least another 6 weeks when I visit the radiotherapy oncologist for a follow-up meeting. The effect of the therapy continues for about that long, so there will be a gradual easing back of the medication during this time.
In fact I started the easing back on the medication myself, by accident, least weekend. On Saturday morning I got up and went straight off to my normal early Saturday social event - a cuppa with my previous walking group (with which I can't keep up any more, so I don't walk, just meet them for a cuppa and a chat). I didn't have time to take the myriad of pills before I went, so thought I would take them when I got back. Trouble is it took me most of the day before I returned home and even gave the medication a thought. By the time I realised I hadn't taken any of it, I also realised that I was still not in any pain and had been walking easily, if not robustly.
I decided then and there to continue with the evening meds, give up the morning meds, every day unless the pain returned. And it has all been fine. I have almost halved my intake of 'drugs' and might just be on my way to avoiding being put onto a methadone program permanently. The thought of it!!
Anyway, I've confessed my sins to my GP and the pain management medico, the estimable Dr. Roger Cole, and they have both forgiven me my sins and endorsed my strategy.
The other naughty thing I did without medical endorsement was, several weeks ago, to stop taking the morning steroid pills that were part of the pain management strategy - apparently it's very good for reducing swelling in the offending muscle. But it's a steroid! One morning while brushing my teeth I looked in the bathroom mirror and didn't recognise the face looking back at me. It was all puffy and fat around the jowels - not what I had been used to - at least for the past 6 years. I owned up to that to the medicos and they said it was my choice (as are they all) and to start taking them again if I went back into pain. As that didn't happen, I didn't take them again - until yesterday morning.
That was Thursday morning. On Wednesday afternoon I had a text message conversation with Dr. Cole and fessed up to my more recent sin. I related that the radiotherapy had recently taken the wind out of my sails - energy wise - fatigue had set in and all I did all day was lie on the bed or the couch and wait for whichever wonderful friend or relative had volunteered to take me to the hospital for my therapy. People were doing my shopping, bringing me nourishing food and generally pampering me. Dr. Cole suggested that if I didn't mind chipmunking through the next couple of weeks and took up the steroids again it would help me get off the couch. My text back to him was to answer that I would ponder his suggestion and let him know the outcome. So...... yesterday morning I took one of the prescribed 2 Dexamethasone tablets - just dipping my toe in the water. It seemed like a myrical, my usual one hour in the morning of energy lasted 'til about 3 in the afternoon when I finally crashed after coming back from treatment.
So this morning I took the prescribed 2 Dex, and here I am typing this post at 10pm after doing the washing, changing the bed, going to bank and PO etc and being out for most of the day - lunching with special friends, Karen and Steve by the beach and having tea at home after last treatment today with my friend and driver, Ann. She left at 5.45pm and I was still full of energy. Gosh! I hope I can sleep tonight. I guess I'll just have to make the chipmunk look the latest fashion :)
While all this couch lounging has been going on I have been devastated by all the television news reports of the massive flooding through Queensland, New South Wales and Victoria. The number of people who have been dislodged from their homes and businesses and whose lives and livelihoods have been decimated is very heart wrenching, not to mentoin the loss of at least 2 lives. It's a miracle and a blessing that there haven't been more. And the destructive Queensland floods were only one year ago. We must all find a way to help - in any way we can.
It's now 10.20pm on Friday 9 March and I'm off to bed to try to sleep before going to a 60th birthday lunch time celebration for a life-long family friend - well, his life anyway! Happy 60th for tomorrow, Tony xx
In fact I started the easing back on the medication myself, by accident, least weekend. On Saturday morning I got up and went straight off to my normal early Saturday social event - a cuppa with my previous walking group (with which I can't keep up any more, so I don't walk, just meet them for a cuppa and a chat). I didn't have time to take the myriad of pills before I went, so thought I would take them when I got back. Trouble is it took me most of the day before I returned home and even gave the medication a thought. By the time I realised I hadn't taken any of it, I also realised that I was still not in any pain and had been walking easily, if not robustly.
I decided then and there to continue with the evening meds, give up the morning meds, every day unless the pain returned. And it has all been fine. I have almost halved my intake of 'drugs' and might just be on my way to avoiding being put onto a methadone program permanently. The thought of it!!
Anyway, I've confessed my sins to my GP and the pain management medico, the estimable Dr. Roger Cole, and they have both forgiven me my sins and endorsed my strategy.
The other naughty thing I did without medical endorsement was, several weeks ago, to stop taking the morning steroid pills that were part of the pain management strategy - apparently it's very good for reducing swelling in the offending muscle. But it's a steroid! One morning while brushing my teeth I looked in the bathroom mirror and didn't recognise the face looking back at me. It was all puffy and fat around the jowels - not what I had been used to - at least for the past 6 years. I owned up to that to the medicos and they said it was my choice (as are they all) and to start taking them again if I went back into pain. As that didn't happen, I didn't take them again - until yesterday morning.
That was Thursday morning. On Wednesday afternoon I had a text message conversation with Dr. Cole and fessed up to my more recent sin. I related that the radiotherapy had recently taken the wind out of my sails - energy wise - fatigue had set in and all I did all day was lie on the bed or the couch and wait for whichever wonderful friend or relative had volunteered to take me to the hospital for my therapy. People were doing my shopping, bringing me nourishing food and generally pampering me. Dr. Cole suggested that if I didn't mind chipmunking through the next couple of weeks and took up the steroids again it would help me get off the couch. My text back to him was to answer that I would ponder his suggestion and let him know the outcome. So...... yesterday morning I took one of the prescribed 2 Dexamethasone tablets - just dipping my toe in the water. It seemed like a myrical, my usual one hour in the morning of energy lasted 'til about 3 in the afternoon when I finally crashed after coming back from treatment.
So this morning I took the prescribed 2 Dex, and here I am typing this post at 10pm after doing the washing, changing the bed, going to bank and PO etc and being out for most of the day - lunching with special friends, Karen and Steve by the beach and having tea at home after last treatment today with my friend and driver, Ann. She left at 5.45pm and I was still full of energy. Gosh! I hope I can sleep tonight. I guess I'll just have to make the chipmunk look the latest fashion :)
While all this couch lounging has been going on I have been devastated by all the television news reports of the massive flooding through Queensland, New South Wales and Victoria. The number of people who have been dislodged from their homes and businesses and whose lives and livelihoods have been decimated is very heart wrenching, not to mentoin the loss of at least 2 lives. It's a miracle and a blessing that there haven't been more. And the destructive Queensland floods were only one year ago. We must all find a way to help - in any way we can.
It's now 10.20pm on Friday 9 March and I'm off to bed to try to sleep before going to a 60th birthday lunch time celebration for a life-long family friend - well, his life anyway! Happy 60th for tomorrow, Tony xx
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