I'm still waiting to find out what is happening for me medically. The admission for a needle biopsy and CT scan did not happen as originally advised by the Princess Alexandra Hospital doctors. I was told it would probably happen last Tuesday week. The doctors were planning to check out my neck at the same time..... a "one stop shop" as the specialist called it. I did receive a letter advising that I had been placed on an ENT waiting list at Logan Hospital of all places, miles outside of my locality, and will be advised in due course. I did attempt to contact my consultant/surgeon's registrar and left a message with his pager service, last week, but have yet to receive a reply.
If no further news by Tuesday I'll see my GP.
The only event of note to happen in the last 2 weeks has been a PET Scan which took place on Friday. Hopefully that will shed light on my situation.
I'm a bit sore at the moment as one can imagine. Having a large mass in one's backside is not good. I still think there is an element of infection involved, even if there is a sarcoma growing. Adjacent areas have been affected by disease for years as posted previously, and much of the pain and flare-ups sure feel like infection. It sometimes reaches level 7 pain, but then can just as easily disappear altogether leaving mild discomfort. The area of hard tissue continues to grow.... not good :(
I am otherwise ok and am in good spirits and moral. I am having however to rely on superannuation, financially, which is finite unfortunately.... a bit of a worry. I was hoping to return to work in April/May. However with pain, discomfort, possible future treatment and surgery, it's difficult to offer my services to any employer at present.
I'm still working away on my hobbies (though pain is hindering me) and hope to release my Sopwith Snipe aircraft for FSX before any treatment/surgery occurs. I'm not all that optimistic, that I'll make it though, as there is still much work to do.
Life is good and I'm glad to be here.
cheers
Rob.
Sunday, 8 June 2008
Saturday, 24 May 2008
Bad News: Cancer appears to have spread :(
I've been meaning to update this blog for a while. It's taken me much longer to recover from the radio therapy than I thought. Anyway for the last six weeks a lump has been developing in my backside (i.e. arse, ass, bum, derrière or whatever one may wish to call it.)
I saw my general practitioner about it a month ago. He told me to contact the hospital via their outpatient system. I saw them two weeks ago. They immediately arranged an urgent MRI scan which fortunately took place on Monday of last week. I had my follow up outpatients review yesterday and I was told that it does look like a spread of the liposarcoma. I was going to say what a bummer!! However perhaps I'm being a bit too flippant. I've read of liposarcoma being referred to as a notorious killer. Of all the cancer's to have..... :(
Arrangements are being made to carry out a needle biopsy, ct scan, pet scan and an ENT review. I'll find out more on Tuesday. My poor old backside and groin are very painful :(
More posts to follow :(
Rob
I saw my general practitioner about it a month ago. He told me to contact the hospital via their outpatient system. I saw them two weeks ago. They immediately arranged an urgent MRI scan which fortunately took place on Monday of last week. I had my follow up outpatients review yesterday and I was told that it does look like a spread of the liposarcoma. I was going to say what a bummer!! However perhaps I'm being a bit too flippant. I've read of liposarcoma being referred to as a notorious killer. Of all the cancer's to have..... :(
Arrangements are being made to carry out a needle biopsy, ct scan, pet scan and an ENT review. I'll find out more on Tuesday. My poor old backside and groin are very painful :(
More posts to follow :(
Rob
Thursday, 14 February 2008
Treatment for Sarcoma Now Finished
This will just be a quick post. I had my final radio therapy treatment for liposarcoma yesterday (Wednesday). This time around the dosage was much less than the previous treatment and lasted only 8 days. It was described by the doctor as a booster dose, to ensure the success of the surgery.
I managed to commute successfully on a daily basis, though it was an ordeal at times. My leg is suffering from both surgical wounds & radio therapy. A new ferry timetable, bus strikes, a bus accident (no-one injured), and some drunken indigenous people abusing and threatening to assault a bus driver & passengers (on their big day) added drama to the period. (Local residents are not exactly happy about the new Ferry timetable though. Especially those who travel in peak times).
The leg did regress slightly due to the combined effects of traveling and therapy. Little things such as tying shoe laces, picking objects off the ground, and getting dressed after a shower, again became an ordeal after being quite easy to do for a few weeks.
Even the first round of radio therapy from August/September is still burning and flaring up with inflammation. Both that area and the flap area are very hard and become heated from time to time. The surgical pressure garment that I have to wear is an absolute life saver, greatly increasing mobility.
I've at least another two months rest and recovery at home now. I was told by one of the orthopedic doctors that the leg will take at least a year to heal, possibly longer. I hope I am not sidelined all that time.
Anyway I am sure I will benefit from my rest in the coming weeks. I hope to start walking again on a daily basis, provided the radiation treatment does not break my skin. I'll resume hobbies such as 3d modeling in a few days. Being considerably more skilled now I can achieve a fair bit in a short period of time. Thus I don't have to sit for long periods. I have music and the internet to interest me too.
I am very pleased to be temporarily free of the medical profession for a week or so at least.
cheers
Rob.
I managed to commute successfully on a daily basis, though it was an ordeal at times. My leg is suffering from both surgical wounds & radio therapy. A new ferry timetable, bus strikes, a bus accident (no-one injured), and some drunken indigenous people abusing and threatening to assault a bus driver & passengers (on their big day) added drama to the period. (Local residents are not exactly happy about the new Ferry timetable though. Especially those who travel in peak times).
The leg did regress slightly due to the combined effects of traveling and therapy. Little things such as tying shoe laces, picking objects off the ground, and getting dressed after a shower, again became an ordeal after being quite easy to do for a few weeks.
Even the first round of radio therapy from August/September is still burning and flaring up with inflammation. Both that area and the flap area are very hard and become heated from time to time. The surgical pressure garment that I have to wear is an absolute life saver, greatly increasing mobility.
I've at least another two months rest and recovery at home now. I was told by one of the orthopedic doctors that the leg will take at least a year to heal, possibly longer. I hope I am not sidelined all that time.
Anyway I am sure I will benefit from my rest in the coming weeks. I hope to start walking again on a daily basis, provided the radiation treatment does not break my skin. I'll resume hobbies such as 3d modeling in a few days. Being considerably more skilled now I can achieve a fair bit in a short period of time. Thus I don't have to sit for long periods. I have music and the internet to interest me too.
I am very pleased to be temporarily free of the medical profession for a week or so at least.
cheers
Rob.
Friday, 25 January 2008
Not yet a cancer survivor
Another month is almost over, the first month of 2008. I'd love to post that there has been remarkable improvement, but I cannot.
The only difference is that the back of my leg no longer feels like like a lump of cardboard with rocks embedded in it. The leg is a little bit softer now, but the fiery internal lumps are still there.
Thankfully the external wounds also have now healed and stopped oozing puss.
I thought I perceived an improvement in the condition of my leg on Monday of last week when I traveled to the PAH oncology clinic. However I returned home with a temperature of 38 ° C. The highest since leaving hospital. This week I have also been uncomfortable in bed at night, almost a throwback to where I was at in early December.
I've also been confronted with a plethora of other afflictions and symptoms :- massive itches in my legs; flare ups of inflammatory pain in various parts of my leg; stinging pain and the most ghastly purple-red colour at the top of my calf; flare ups of radiation burn pain; thrombosis type pain in the calf; severe fluid swelling sometimes partially affecting mobility. I am also experiencing loss of skin sensation in a 2 to 3 inch band along the length of the wound from the buttock to the back of the knee. There is also loss of sensation over large parts of the lower calf, though this is variable. The latter is sort of weird as the skin sensation is almost normal at times but the underlying tissue feels dead. At times the whole lower calf feels dead. I think sitting at this desk for more than a couple of hours has a bit to do with this. More restrictions.... :(
As to being a cancer survivor, the radio oncologist told me it looks like there might be a little bit they missed, hence further radiotherapy in February.
My visit to ortho-oconcology today, was next to useless and a general waste of time compared to other recent medical encounters...... I'm not happy :(
More later.... to be continued.
Rob
The only difference is that the back of my leg no longer feels like like a lump of cardboard with rocks embedded in it. The leg is a little bit softer now, but the fiery internal lumps are still there.
Thankfully the external wounds also have now healed and stopped oozing puss.
I thought I perceived an improvement in the condition of my leg on Monday of last week when I traveled to the PAH oncology clinic. However I returned home with a temperature of 38 ° C. The highest since leaving hospital. This week I have also been uncomfortable in bed at night, almost a throwback to where I was at in early December.
I've also been confronted with a plethora of other afflictions and symptoms :- massive itches in my legs; flare ups of inflammatory pain in various parts of my leg; stinging pain and the most ghastly purple-red colour at the top of my calf; flare ups of radiation burn pain; thrombosis type pain in the calf; severe fluid swelling sometimes partially affecting mobility. I am also experiencing loss of skin sensation in a 2 to 3 inch band along the length of the wound from the buttock to the back of the knee. There is also loss of sensation over large parts of the lower calf, though this is variable. The latter is sort of weird as the skin sensation is almost normal at times but the underlying tissue feels dead. At times the whole lower calf feels dead. I think sitting at this desk for more than a couple of hours has a bit to do with this. More restrictions.... :(
As to being a cancer survivor, the radio oncologist told me it looks like there might be a little bit they missed, hence further radiotherapy in February.
My visit to ortho-oconcology today, was next to useless and a general waste of time compared to other recent medical encounters...... I'm not happy :(
More later.... to be continued.
Rob
Monday, 31 December 2007
Still Alive........
..... If not totally well. The title is slightly tongue in cheek. I hope to start posting more frequently on this blog.
Normality is slowly returning, though it will be many months before my leg is healed internally. I currently have to wear a pressure garment on the leg, which I am now quite used to. I have been told I have to wear this for approximately 6 months to 2 years.
The leg is slightly infected and being monitored by hospital doctors via outpatients and treated with anti-biotics. There is one small wound being reluctant to heal and oozing a little bit of puss & serum, where one of the surgical drains exited my leg. I have been told that if it continues beyond the next couple of weeks I might have to go back into hospital and possible further surgery.
I am quite mobile and can drive ok. Commuting by public transport, particularly bus, can be quite arduous, especially some of the Veolia buses which don't allow much leg room forcing me to sit back on the seat causing pressure on the leg. The back of the leg is hard & swollen & will be that for some time, though there has been gradual improvement since I left hospital. It's like sitting on a lump of cardboard with lumps of hard rock embeded in it.
In January I have a few outpatients appointments scheduled, including opthamology (the surgery took its toll on the eyes - 5 hours lying on my belly under GA during surgery - detached vitreous gel); oncology (yet more radio therapy coming up); orthopedic reviews & scans going into February.
I probably won't know the outcome of all this until March/April 2008. (Though I would hope to have an indication by the end of February.)
I would describe cancer as an ordeal to be endured, rather than a battle.... at least that's the way it's been so far.
I still haven't blogged about my stay in hospital & surgery as I intended to. I may yet do so.
It's New Years eve and I would like to wish my readers a happy & prosperous 2008.... take care.
cheers
Rob.
Normality is slowly returning, though it will be many months before my leg is healed internally. I currently have to wear a pressure garment on the leg, which I am now quite used to. I have been told I have to wear this for approximately 6 months to 2 years.
The leg is slightly infected and being monitored by hospital doctors via outpatients and treated with anti-biotics. There is one small wound being reluctant to heal and oozing a little bit of puss & serum, where one of the surgical drains exited my leg. I have been told that if it continues beyond the next couple of weeks I might have to go back into hospital and possible further surgery.
I am quite mobile and can drive ok. Commuting by public transport, particularly bus, can be quite arduous, especially some of the Veolia buses which don't allow much leg room forcing me to sit back on the seat causing pressure on the leg. The back of the leg is hard & swollen & will be that for some time, though there has been gradual improvement since I left hospital. It's like sitting on a lump of cardboard with lumps of hard rock embeded in it.
In January I have a few outpatients appointments scheduled, including opthamology (the surgery took its toll on the eyes - 5 hours lying on my belly under GA during surgery - detached vitreous gel); oncology (yet more radio therapy coming up); orthopedic reviews & scans going into February.
I probably won't know the outcome of all this until March/April 2008. (Though I would hope to have an indication by the end of February.)
I would describe cancer as an ordeal to be endured, rather than a battle.... at least that's the way it's been so far.
I still haven't blogged about my stay in hospital & surgery as I intended to. I may yet do so.
It's New Years eve and I would like to wish my readers a happy & prosperous 2008.... take care.
cheers
Rob.
Thursday, 29 November 2007
Home from hospital
Just a quick note that I came home from hospital yesterday. I was in hospital 3 weeks all up.
I can't sit long at a computer for the time being. I am alive & I can walk & that's the main thing for now.
Many thanks to all the guys at PAH for looking after me for the last 3 weeks.
Hopefully more later.
cheers
Rob
I can't sit long at a computer for the time being. I am alive & I can walk & that's the main thing for now.
Many thanks to all the guys at PAH for looking after me for the last 3 weeks.
Hopefully more later.
cheers
Rob
Monday, 5 November 2007
Countdown....
Surgery tomorrow. The countdown begins. I'll be spending most of the night setting up my house for my period of convalescence post surgery, which will be approximately 2 months.
My respiratory problems have eased up, moving up from my chest into my thorax. It's the top part of my chest that always seems to be afflicted with breathing problems, rather then my lungs. I still have a sinus run but not all that bad. My GP was unwilling to give me an antibiotic as he felt that the hospital would postpone surgery and blame him, so he's leaving it up to the hospital tomorrow.
Last week in pre-admin I was told I would be last on the list in the afternoon, to give the plastic surgeons plenty of time to finish their work. However when I phoned the surgical care unit this evening, for my arrival time, I was told 7:30AM. As I live on a bay island, that time is almost a physical impossibility. A quick check of public transport time-tables confirmed that. As I'll have to leave my car at home & no-one else to drive me (the only island taxi doesn't start before 6:00AM), I have to leave home, on foot, at 5:20AM to to catch the 6:20AM ferry. Catching the first available bus will get me in there at 8:00AM. The hospital wasn't very happy when I told them I could not get there any earlier. They know where I live. I told them these things in pre-admin. This was no drama in June with the biopsy surgery as to these issues, as the hospital made allowances as to where I lived. Maybe as the doctors originally had me scheduled for Tuesday afternoon they didn't worry to note this last week. It's Melbourne Cup day tomorrow.
In June, when I had the biopsy, they had me in at 8:00AM, only for me to to find out I was being operated on in the afternoon. I am diabetic and had no breakfast.... a recipe for disaster with hypos... the same again tomorrow. It's not good. Why can't they stick to plans and do things as originally intended in an organised, calm manner? The Australian public hospital system is very much in the media these days and at times appears to be in disarray. The hospital where my surgery is being carried out (Princess Alexandra - Brisbane) was having to cancel much surgery due to budgetary constraints as very much reported in the press, recently. I don't know whether that was why I have encountered some unusual situations since late September with doctors being non-committal on a range issues until last week, and thus the hurried nature of arrangements. The state's premier has since relented on the surgery ban and allowed the hospital more time to sort out its budgetary problems.
I encountered all sorts of administrative muck ups when I had an appendectomy (in a different hospital) a few years ago - appointments being mailed to the wrong address, getting me down to the hospital 2 or 3 times for the same thing only to send me back home again etc.
I must comment that the health system falls down in the area of administration and co-ordination as well as the usual range of problems affecting the medical professions. Attend to administration problems and communication problems, and the health system will run more effectively and a lot less expensively. This sounds simplistic, and is. It's a matter dear to my heart and I hope to blog more on this in the future. Doctors are among the most appalling communicators among the professionals I encounter. Back in 2000 I was seriously considering returning to studies in psychology with that in mind, as a thesis. But how to go about it? One might as well study how cats cross a road..... LOL. ;)
It's very much a mystery why urgent radio-therapy of a rapidly growing tumour, commenced more than six weeks after the biopsy. The oncologist told me it would be 2 weeks. Was it an administrative or medical decision? Then the previously mentioned cancellation of outpatients appointments making it almost too late for surgery?
My simplistic advice to the medical profession ... 'stick to plans, communicate & listen to your patients, but think outside the square when you have to guys, and check things out for yourselves. Rely on your own judgement rather than just accepting your fellow professionals..... they might not have looked too closely at that scan either ;) ..... LOL'
As they say laughter is the best medicine.. :) That plus effective communication goes a long way.
Most doctors are OK, but why do they work & communicate in such a harem scarem manner?
Again I digress.... let's hope all goes well and I move from being a cancer sufferer to cancer survivor.
See you all some time in the future :)
cheers
Rob.
My respiratory problems have eased up, moving up from my chest into my thorax. It's the top part of my chest that always seems to be afflicted with breathing problems, rather then my lungs. I still have a sinus run but not all that bad. My GP was unwilling to give me an antibiotic as he felt that the hospital would postpone surgery and blame him, so he's leaving it up to the hospital tomorrow.
Last week in pre-admin I was told I would be last on the list in the afternoon, to give the plastic surgeons plenty of time to finish their work. However when I phoned the surgical care unit this evening, for my arrival time, I was told 7:30AM. As I live on a bay island, that time is almost a physical impossibility. A quick check of public transport time-tables confirmed that. As I'll have to leave my car at home & no-one else to drive me (the only island taxi doesn't start before 6:00AM), I have to leave home, on foot, at 5:20AM to to catch the 6:20AM ferry. Catching the first available bus will get me in there at 8:00AM. The hospital wasn't very happy when I told them I could not get there any earlier. They know where I live. I told them these things in pre-admin. This was no drama in June with the biopsy surgery as to these issues, as the hospital made allowances as to where I lived. Maybe as the doctors originally had me scheduled for Tuesday afternoon they didn't worry to note this last week. It's Melbourne Cup day tomorrow.
In June, when I had the biopsy, they had me in at 8:00AM, only for me to to find out I was being operated on in the afternoon. I am diabetic and had no breakfast.... a recipe for disaster with hypos... the same again tomorrow. It's not good. Why can't they stick to plans and do things as originally intended in an organised, calm manner? The Australian public hospital system is very much in the media these days and at times appears to be in disarray. The hospital where my surgery is being carried out (Princess Alexandra - Brisbane) was having to cancel much surgery due to budgetary constraints as very much reported in the press, recently. I don't know whether that was why I have encountered some unusual situations since late September with doctors being non-committal on a range issues until last week, and thus the hurried nature of arrangements. The state's premier has since relented on the surgery ban and allowed the hospital more time to sort out its budgetary problems.
I encountered all sorts of administrative muck ups when I had an appendectomy (in a different hospital) a few years ago - appointments being mailed to the wrong address, getting me down to the hospital 2 or 3 times for the same thing only to send me back home again etc.
I must comment that the health system falls down in the area of administration and co-ordination as well as the usual range of problems affecting the medical professions. Attend to administration problems and communication problems, and the health system will run more effectively and a lot less expensively. This sounds simplistic, and is. It's a matter dear to my heart and I hope to blog more on this in the future. Doctors are among the most appalling communicators among the professionals I encounter. Back in 2000 I was seriously considering returning to studies in psychology with that in mind, as a thesis. But how to go about it? One might as well study how cats cross a road..... LOL. ;)
It's very much a mystery why urgent radio-therapy of a rapidly growing tumour, commenced more than six weeks after the biopsy. The oncologist told me it would be 2 weeks. Was it an administrative or medical decision? Then the previously mentioned cancellation of outpatients appointments making it almost too late for surgery?
My simplistic advice to the medical profession ... 'stick to plans, communicate & listen to your patients, but think outside the square when you have to guys, and check things out for yourselves. Rely on your own judgement rather than just accepting your fellow professionals..... they might not have looked too closely at that scan either ;) ..... LOL'
As they say laughter is the best medicine.. :) That plus effective communication goes a long way.
Most doctors are OK, but why do they work & communicate in such a harem scarem manner?
Again I digress.... let's hope all goes well and I move from being a cancer sufferer to cancer survivor.
See you all some time in the future :)
cheers
Rob.
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