I've decided to redo my earlier post on lymphadenopthay as it was a bit long and negative. Thus I will repost at a future date. I'll also blog on some of my prior history which may be pertinent. I do consider my cancer journey to have started in 2000/2001 as I had a number of quite nasty illnesses which both my GPs of the time suspected were caused by some form of cancer trying to happen. I'd generally recovered from these illnesses by 2nd quarter 2002, however some symptoms persisted even though I was otherwise well and enjoying life, things gradually and slowly went downhill from April 2003 onwards. There was also an interesting period back in 1995/96 with recurring infection which I might detail, as some types of infection can set one up for cancer. I have also been afflicted in the past by severe pseudomonas infection which was never treated with the appropriate antibiotics. The doctor, at that time, did want to hospitalize me and winged it with ordinary anti-biotics. Pseudomanas is a common bacteria, found in water and soil, enjoys warm humid conditions and causes problems for diabetic sufferers and people with illnesses such as cystic fibrosis. That bacteria may be responsible for some current symptoms.
All this and more. I may even write general interest articles written from the lay perspective and start to post links to articles on sarcoma, infection, cancer in general, and diabetic health issues. I'm trying to aim for articles about one screen size on a 1280x768 monitor. I'll probably write articles in parts. (Fodder for hypochondriacs.... 'grin'.)
My focus from now on is going to be on surviving.... a bit more exercise, perhaps more assertive with the medics (whether that will work lol ?.... they just do their own thing anyway) and more health blog articles. 3D graphics is great for providing a focus and perhaps some income on recovery but will take a back seat to survival. I'll drop some activities such as terrain creation for CFS3 for the time being.
Rob
Thursday, 12 June 2008
Still Waiting.......
I still have not received any communications from the Princess Alexandra Hospital. I did call again yesterday as there were no appointments in the mail. I was originally told by a resident doctor, during my last outpatient's visit, that I would most likely have an admission on 27 May for a needle biopsy of the new mass and that other tests/reviews would occur on the same admission. One of the reviews that was supposed to take place, on that occasion, was an ENT review (which is not a major concern for me at this time). However as mentioned previously, that's been shunted away to some yet to be determined time in the future. Also as mentioned previously, I also called the hospital last week and my enquiry was not responded to either.
I am starting to become concerned. The doctors did say that it appears to be a re-occurrence of Sarcoma going on their observations and examination of a MRI scan. Everything was supposed to be urgent given that liposarcoma is a life threatening illness. Whatever it is, is growing rapidly from the sensation perspective. Life is becoming quite painful and uncomfortable. Even if it is difficult to treat by surgery and radio therapy, there are other possible treatments too. I'll touch on sarcoma treatments in a future post. Likewise I'll post some observations on my history of infection which appears to be pertinent from the symptomatic perspective, as sarcoma has developed concurrently with acute and chronic epididymitis and recurring UTI's in parts of my body affected by these symptoms. (i.e. groin, buttock thigh)
Things are dragging out. It's now eight weeks since I drew attention to the new mass to my GP and six weeks since orthopedics began investigations, and other than an MRI and PET scans nothing else has happened.
I also haven't forgotten the possibility of Hodgkin's Lymphoma due to long term adenopathy. My GP had referred me to a private surgeon to carry out a biopsy for that one. However when I mentioned that to the PAH Orthopedic doctors, they said they would do the whole lot and thus I shelved that referral.
One wonders if I simply have been forgotten. This appeared to occur last year. Orthopedics referred me to oncology, for radiotherapy, when liposarcoma was first detected by biopsy last June. The oncology department re-assured me that orthopedics were monitoring my situation and would advise me of my surgery date accordingly. However when radiotherapy was completed and I had not heard from them they looked up the computer system and there were no appointments or orthopedic monitoring in place. I would have been waiting forever if I had not mentioned it, according to one of the nurses. It's a bit of a concern that there is apparently no monitoring and review system in place by the orthopedics department, other than the outpatients system. Of course they have yet to give me a follow up outpatients appointment either. :( Early next week is the earliest my GP will be available.
Rob
I am starting to become concerned. The doctors did say that it appears to be a re-occurrence of Sarcoma going on their observations and examination of a MRI scan. Everything was supposed to be urgent given that liposarcoma is a life threatening illness. Whatever it is, is growing rapidly from the sensation perspective. Life is becoming quite painful and uncomfortable. Even if it is difficult to treat by surgery and radio therapy, there are other possible treatments too. I'll touch on sarcoma treatments in a future post. Likewise I'll post some observations on my history of infection which appears to be pertinent from the symptomatic perspective, as sarcoma has developed concurrently with acute and chronic epididymitis and recurring UTI's in parts of my body affected by these symptoms. (i.e. groin, buttock thigh)
Things are dragging out. It's now eight weeks since I drew attention to the new mass to my GP and six weeks since orthopedics began investigations, and other than an MRI and PET scans nothing else has happened.
I also haven't forgotten the possibility of Hodgkin's Lymphoma due to long term adenopathy. My GP had referred me to a private surgeon to carry out a biopsy for that one. However when I mentioned that to the PAH Orthopedic doctors, they said they would do the whole lot and thus I shelved that referral.
One wonders if I simply have been forgotten. This appeared to occur last year. Orthopedics referred me to oncology, for radiotherapy, when liposarcoma was first detected by biopsy last June. The oncology department re-assured me that orthopedics were monitoring my situation and would advise me of my surgery date accordingly. However when radiotherapy was completed and I had not heard from them they looked up the computer system and there were no appointments or orthopedic monitoring in place. I would have been waiting forever if I had not mentioned it, according to one of the nurses. It's a bit of a concern that there is apparently no monitoring and review system in place by the orthopedics department, other than the outpatients system. Of course they have yet to give me a follow up outpatients appointment either. :( Early next week is the earliest my GP will be available.
Rob
Sunday, 8 June 2008
The Waiting Game.......
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.
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.
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.
Subscribe to:
Posts (Atom)
