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ksplat
Moderator
Joined: 26 Apr 2007
Posts: 509
Location: Brisbane, Australia
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 Posted: Sun Mar 23, 2008 5:50 pm Post subject: Re: Several Questions. Help greatly appreciated |
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Hello Dorothy
I was distressed to read yr latest post regarding John & his problems. Also very annoyed about the news on the "Oncology Unit" for Dwn. Bloody beaurocrats (sp???)!!!
I don't really know what to suggest for the lower back pain except for "heat packs" & consulting a physio or massage therapist. If the palliative care team can be told the meds aren't working then surely they can change the medication or alternate current meds with additional pain relief?
I'm so sorry to hear about John's pain, pain is so debillitating & he must be feeling very "low" at the moment. I hope you're not "copping it" too much?
Thinking of you.
Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227
"Without Faith We Have Nothing" |
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Darwin
Experienced user
Joined: 11 Feb 2008
Posts: 87
Location: Perth, Western Australia
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| Posted: Sun Mar 23, 2008 8:18 pm Post subject: Re: Several Questions. Help greatly appreciated |
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Thanks Angie
Yes the bureaucrats have a lot to answer for. A few weeks ago one senator had the strength to reintroduce the Rights of the Terminally Ill Bill so it will be interesting to see how that process goes.
I have taken a massage course so have been massaging John's back with deep heat rub but that doesn't seem to offer much relief. Heat packs are a bit uncomfortable in this hot climate. Salt baths are helpful in the short term. I never realised until now that things like lack of sleep because of diahorhea (sp?) can have such an impact on pain, I guess it is common sense though.
The balancing act between advocating for someone and yet not interfering and taking away their right to make the decisions about their own body and health is a fine balancing act.
Has anyone thought about writing a carer's manual? There are so many issues beyond the obvious. Again this forum has been a godsend and I thank Jim, Leo and the other moderators for providing this support.
On a happy note - John enjoyed his Easter Egg:)
_________________
Ex husband's diagnosis was January 2006, stage IV bowel cancer with met to liver and lungs. Current chemo treatment 5FU + Avastin 24/7 pump plus radiation to pelvic area and planning radiation spheres injected directly into the liver tumours. |
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Darwin
Experienced user
Joined: 11 Feb 2008
Posts: 87
Location: Perth, Western Australia
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| Posted: Fri Mar 28, 2008 9:33 am Post subject: Re: Several Questions. Help greatly appreciated |
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Hi Jim
How can I send you a private email? I am very concerned about he number of emails about carers upset about beinf abused in fact I am shocked!
Dorothy
_________________
Ex husband's diagnosis was January 2006, stage IV bowel cancer with met to liver and lungs. Current chemo treatment 5FU + Avastin 24/7 pump plus radiation to pelvic area and planning radiation spheres injected directly into the liver tumours. |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 3787
Location: Tennessee
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ksplat
Moderator
Joined: 26 Apr 2007
Posts: 509
Location: Brisbane, Australia
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| Posted: Sun Apr 13, 2008 4:52 am Post subject: Re: Several Questions. Help greatly appreciated |
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Dear Dorothy
How is John at the mo & where is he up to with his treatment?
How have you been lately? It's been quite a while since I've been in touch & was on the forum tonight looking around for anything with your name attached (Darwin) but couldn't find anything.
I do hope John's condition has remained stable for the moment & I pray you are coping with & managing John's back pain better. Most importantly I pray you are looking after self too!
Thinking of you, Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227
"Without Faith We Have Nothing" |
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Darwin
Experienced user
Joined: 11 Feb 2008
Posts: 87
Location: Perth, Western Australia
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| Posted: Sun Apr 13, 2008 6:58 am Post subject: Re: Several Questions. Help greatly appreciated |
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Thanks for thinking of John and me Angie. It is much appreciated. At present John is in the hospice for a few days as he has very severe pain when he stands even for a moment or two but had no pain whilst sitting down. The doctors want to observe and try to find out what is causing the pain as the painkillers were increased twice last week with no effect. John had an ultra sound last Thursday so we await the results. I'll let you know how that goes.
In the meantime I am in the process of supervising having a new roof put on the house before the winter rains arrive. Living near the ocean with a metal roof isn't a good mix 
I hope you are well and will be back online more often in a couple of weeks as at present I only have dialup and not broadband... another story 
Hugs to you all
Dorothy
_________________
Ex husband's diagnosis was January 2006, stage IV bowel cancer with met to liver and lungs. Current chemo treatment 5FU + Avastin 24/7 pump plus radiation to pelvic area and planning radiation spheres injected directly into the liver tumours. |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 3787
Location: Tennessee
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| Posted: Sun Apr 13, 2008 9:45 am Post subject: Re: Several Questions. Help greatly appreciated |
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As always, it is wonderful to hear from you, Dorothy. I too will need a new roof soon. My house was built in 1965 and still has the original roof .
Take care and come back soon.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/ |
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Darwin
Experienced user
Joined: 11 Feb 2008
Posts: 87
Location: Perth, Western Australia
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| Posted: Sun Apr 13, 2008 12:33 pm Post subject: Re: Several Questions. Help greatly appreciated |
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Hey Jim
Puttig a roof on a house puts cancer in perspective 
It makes me realise that we need to stop the rain dripping on our heads literally whilst we grapple with the stresses and find the strength to cope with this nasty intrusion, because after all that's what it is and athat is ALL that it is. We do not battle cancer we live with it and show that in adversity we humans are indeed perfection and truely remarkable.
This forum has saved me from the spiral of non information and depression...I truely believe that!!!!!!!!!! Thanks Jim for providing it.
I'd aprecaite a PM about John's pain and the ultrasound Jim
Hugs
Dorothy
_________________
Ex husband's diagnosis was January 2006, stage IV bowel cancer with met to liver and lungs. Current chemo treatment 5FU + Avastin 24/7 pump plus radiation to pelvic area and planning radiation spheres injected directly into the liver tumours. |
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Darwin
Experienced user
Joined: 11 Feb 2008
Posts: 87
Location: Perth, Western Australia
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| Posted: Sun Apr 13, 2008 12:35 pm Post subject: Re: Several Questions. Help greatly appreciated |
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Just had a funny thought.... a thread about house renovatuions...hey Jim this site could via with Home and Gardens:)))
Just Kidding:)
_________________
Ex husband's diagnosis was January 2006, stage IV bowel cancer with met to liver and lungs. Current chemo treatment 5FU + Avastin 24/7 pump plus radiation to pelvic area and planning radiation spheres injected directly into the liver tumours. |
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Darwin
Experienced user
Joined: 11 Feb 2008
Posts: 87
Location: Perth, Western Australia
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| Posted: Sun Jun 08, 2008 9:00 pm Post subject: Update |
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Just an update......
John left on his big road trip on Saturday 7th June. He is well equipped with a GPS system with all the hospitals along the way entered into it. A friend came up from Perth to help us pack and thank goodness for him as I couldn't have packed the trailer and car without his help. Everything but the kitchen sink is in there and all labelled for ease of location. This must be what army manouvres are like 
John and his friend who is his co-driver arrive in Perth around 20th and I will fly down on 17th after I have done some packing up and house chores ready for the renters. We have already arranged for an appointment with the new Oncologist for 26th June and pray the medical services in Perth are better than Darwin.
John rings each day and sounds tired but very happy to be doing this trip so I am glad I have been able to help him realise this dream. I guess he can focus on something other than his illness for a while which is good. Yesterday they were arrived in Kununurra and today they are flying over the famous bungle bungles. If you have a look on google and you can see what amazing rock formations they are.
I am really SO very pleased that John is doing this trip as I hear the joy in his voice.
Thanks to everyone for their advice and support.... there are a lot of wise and helpful people here.
_________________
Ex husband's diagnosis was January 2006, stage IV bowel cancer with met to liver and lungs. Current chemo treatment 5FU + Avastin 24/7 pump plus radiation to pelvic area and planning radiation spheres injected directly into the liver tumours. |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 3787
Location: Tennessee
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| Posted: Mon Jun 09, 2008 10:16 am Post subject: Re: Several Questions. Help greatly appreciated |
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Dorothy, glad to hear that John is on the move. I know he has wanted this and that it has been a cause for concern for you for a long time. However, I have never really heard why he wanted to move. Is Perth closer to you or does it have better medical facilities?
John is in my thoughts and prayers and he takes on this greatly anticipated journey.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/ |
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Darwin
Experienced user
Joined: 11 Feb 2008
Posts: 87
Location: Perth, Western Australia
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| Posted: Mon Jun 09, 2008 9:17 pm Post subject: Re: Several Questions. Help greatly appreciated |
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Hi Jim
John wanted to make the move from Darwin to Perth for a range of reasons. These are not in priority order.
The medical facilities are MUCH better; we both have a network of friends there; my home is in Perth and John really loves 4WD adventures through the rugged Australian outback.
John came to Darwin to renovate a house we had owned here 22 years ago. That had been his plan all along for when he took early retirement before the big C came along so he stuck to this plan. Now the house is renovated he wanted to move out of Darwin just as he always intended.
Anyway like most decisions there were a number of influencing factors. I am very glad that he is enjoying this trip. He is taking it slowly and with the help of a heap of medications but he is doing what he wants to do which is the main thing.
Jim thank you so very much for all your support and wisdom
_________________
Ex husband's diagnosis was January 2006, stage IV bowel cancer with met to liver and lungs. Current chemo treatment 5FU + Avastin 24/7 pump plus radiation to pelvic area and planning radiation spheres injected directly into the liver tumours. |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 3787
Location: Tennessee
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Darwin
Experienced user
Joined: 11 Feb 2008
Posts: 87
Location: Perth, Western Australia
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| Posted: Tue Jun 10, 2008 7:43 am Post subject: Re: Several Questions. Help greatly appreciated |
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Yeah he wants to do it... I can't think of a better reason
That's all that matters
After a 16 hour day packing I have the champagne feeling without the champagne so love to you all
Nite
Dorothy
_________________
Ex husband's diagnosis was January 2006, stage IV bowel cancer with met to liver and lungs. Current chemo treatment 5FU + Avastin 24/7 pump plus radiation to pelvic area and planning radiation spheres injected directly into the liver tumours. |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 3787
Location: Tennessee
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