Firstly, I realise I'm a bit late, but I would like to wish all my blog readers all the best for the festive season and a prosperous and happy 2009.
For the time being I'm regarding myself as sarcoma free until the medical profession tells me otherwise. The only effects on my daily existence, from what I've been through, are a great deal of fatigue, and the messy ulcer on my backside, which takes a lot of work keeping clean. I do have other health issues which I will follow through with GP's etc. , one of which may transpire to be sarcoma when investigated. I hope not!
I had a quiet Christmas at home. A trip across to Victoria Point for last minute shopping on Christmas eve left me very fatigued with a very tight chest on top of everything else. I did manage to catch up with my relatives on the phone and thank them for their presents. Hopefully I'll have a bit more energy after new year.
Anyway life goes on and I'm not planning on wasting too much time and have started working on my hobbies again. 3D Modeling is certainly worth keeping up as it may help with future income or at least supplement such. It is relaxing though a bit sedentary.
The weather here is very hot at the moment and this region, South East Queensland, certainly has had a very active storm season. I'm longing for cooler less stressful weather. Last night it was 24C° (75.2°F) at midnight + humidity. It was 2:00AM before I would have fallen asleep. I slept in until 10:00AM today (Sunday) LOL.
Anyway I'm hoping for a sarcoma free year in 2009, and no more surgery I hope.
cheers
Rob
Sunday, 28 December 2008
Friday, 19 December 2008
Good News - Margins Clear
I went along to hospital today for my post discharge outpatient appointment. The good news that the margins of the resected tumour were clear. This means that they likely have removed all the sarcoma with none left behind. Most of the resected tumour comprised of dead tissue which indicates that radio therapy was successful. I was given a copy of the pathology report and surprised to read that the resected tumour was 150x100x100 mm ie 15cm x 10cm x 10cm.... whew some size!!
The tissue on my backside has collapsed somewhat and there's a bit of an ulcer which I am told will take about 3 months to heal. In the meantime I've got to put up with a bit of a discharge until it does heal. This doctor did not restrict me in terms of activities unlike other doctors. The registrar in the ward did not want me to sit until the discharge had stopped. Todays doctor did the same last year ie told me all was ok when the others considered the wound was infected. All the others had me on antibiotics due to the wound being indurated.
The bad news is that the doctors are expecting sarcoma to re-occur in the future. My next outpatients review is in April. There are three chronic disease hotspots currently on the go, which I've mentioned ad nauseum to doctors. They either ignore or dismiss out of hand. Though I would have had a lymph node biopsy were it not for the sarcoma developing in May. The tumour just removed, was initially dismissed out of hand by a GP and the ortho oncology surgeon in charge of my case as unlikely in April & May of this year. Neither of them could initially feel the mass. However the MRI proved that a lesion was present. My groin/crotch/genitals area on the right side tells me that some disease process is ongoing and not cleared by the Sarcoma resection. Likewise my right neck and right ribs breast area. I'll post more on this subject on my sarcoma insights blog.
cheers
Rob
The tissue on my backside has collapsed somewhat and there's a bit of an ulcer which I am told will take about 3 months to heal. In the meantime I've got to put up with a bit of a discharge until it does heal. This doctor did not restrict me in terms of activities unlike other doctors. The registrar in the ward did not want me to sit until the discharge had stopped. Todays doctor did the same last year ie told me all was ok when the others considered the wound was infected. All the others had me on antibiotics due to the wound being indurated.
The bad news is that the doctors are expecting sarcoma to re-occur in the future. My next outpatients review is in April. There are three chronic disease hotspots currently on the go, which I've mentioned ad nauseum to doctors. They either ignore or dismiss out of hand. Though I would have had a lymph node biopsy were it not for the sarcoma developing in May. The tumour just removed, was initially dismissed out of hand by a GP and the ortho oncology surgeon in charge of my case as unlikely in April & May of this year. Neither of them could initially feel the mass. However the MRI proved that a lesion was present. My groin/crotch/genitals area on the right side tells me that some disease process is ongoing and not cleared by the Sarcoma resection. Likewise my right neck and right ribs breast area. I'll post more on this subject on my sarcoma insights blog.
cheers
Rob
Saturday, 13 December 2008
Home From Hospital
I'm home at last from hospital after being there for three weeks following surgery to resect the sarcoma. It feels great to be home indeed! Hospital generally went well. The nursing care was excellent. Hospital food was ok to great, though there were a couple of naff meals and of course nausea and the occasional fever tended to put one of one's food from time to time. I enjoy sleeping in my own bed and the less regimented existence.
On the medical side there were a few surprises. I woke up in ICU after the operation. This was due to concern that I might have a heart attack, which the doctors thought may have been a possibility. I was told that the stress echo cardiogram revealed some ischemic damage. Given that I've had an abnormal ECG since December 2000 and that I had a possible cardiac event at that time, and I was deemed to be free of ischemic damage following a stress test in August of that year, the damage probably occurred then.
It was amusing when I started to come to in ICU. Things were a wee bit weird at first. I had a somewhat vivid dream that I had been offered a contract by a leading flight sim publisher at the same time I was beginning to surface and began to struggle with the respirator tube going down my neck. Somehow my sub conscious mind translated this as haggling over contract details with publisher's represenative. Some of the medication they give you during and after surgery does give one very vivid dreams. When I eventually came to and realised where I was I was greeted by a very Irish nurse, full of cheek and blarney, and quite re-assuring. BTW I hope the dream comes true. I do hope to be available for contracts once I recover, both in my normal day gig and 3d modeling.
On the medical front news was broken to me that the doctors had encountered some surprises during the operation. The tumour was very large and had also attached itself to the bowel and the urethra at the base of the penis. This meant a small part of my bowel had to be removed and the rectum was nicked too. This was one of the reasons I was in hospital so long. The doctors had to be sure that the rectum was robust enough for normal usage and that I remained free of infection as the wound is right next to the back passage. I was told the sarcoma itself was quite large, about the size of a small rock melon.
On the bad news front the ortho oncology surgeon thinks sarcoma is likely to re-occur as it is metastatic, and he possibly did not get it all. He told me I may have further radio therapy. If it does re-occur he has to weigh up between a collostomy and treating me with trabectedin/yondelis. I would certainly question why a collostomy as he would be removing part of the bowel as a precaution. People have survived much worse than I have without resorting to such radical methods. Given overlapping urology symptoms, swelling and adenopathy, if all are sarcoma related I've had sarcoma for a long time and it's already spread to where ever it's going to spread to.... probably small benign looking conditions that suddenly decide grow. I tend to think that radiotherapy or antibiotics in February, provided the trigger and the signal to cause sudden rapid growth of the sarcoma between March and August. Something triggered growth during February/March anyway. I'll post more on my speculations and medical history in my other blog Sarcoma Insight when I'm able to sit a bit more.
Right now I have normal mobility and generally feel ok. I do wake up with body wide aches and pains and have a temperature at times. I have to avoid sitting upright for prolonged periods. I'm not sure how long for. I've known people who've had surgery for urology probloms being told to avoid sitting for long periods for 3 months following surgery. The wound was fairly massive, a 10cm hole takes a lot of healing and filling. My backside is shrinking and changing shape on a daily basis. I've written this small peices at a time, taking frequent breaks and access the internet througout the day from my notebook lying on my side, though it does get rather tiring typing like that. In the meantime I'm enjoying reading a few books and delving into my cd collection.
Many thanks to those who've sent me their best wishes or offered their prayers. I'm quite moved and very encouraged by them. I've still a couple of people to reply to and will do so in the next few days.
thanks and best wishes
Rob.
On the medical side there were a few surprises. I woke up in ICU after the operation. This was due to concern that I might have a heart attack, which the doctors thought may have been a possibility. I was told that the stress echo cardiogram revealed some ischemic damage. Given that I've had an abnormal ECG since December 2000 and that I had a possible cardiac event at that time, and I was deemed to be free of ischemic damage following a stress test in August of that year, the damage probably occurred then.
It was amusing when I started to come to in ICU. Things were a wee bit weird at first. I had a somewhat vivid dream that I had been offered a contract by a leading flight sim publisher at the same time I was beginning to surface and began to struggle with the respirator tube going down my neck. Somehow my sub conscious mind translated this as haggling over contract details with publisher's represenative. Some of the medication they give you during and after surgery does give one very vivid dreams. When I eventually came to and realised where I was I was greeted by a very Irish nurse, full of cheek and blarney, and quite re-assuring. BTW I hope the dream comes true. I do hope to be available for contracts once I recover, both in my normal day gig and 3d modeling.
On the medical front news was broken to me that the doctors had encountered some surprises during the operation. The tumour was very large and had also attached itself to the bowel and the urethra at the base of the penis. This meant a small part of my bowel had to be removed and the rectum was nicked too. This was one of the reasons I was in hospital so long. The doctors had to be sure that the rectum was robust enough for normal usage and that I remained free of infection as the wound is right next to the back passage. I was told the sarcoma itself was quite large, about the size of a small rock melon.
On the bad news front the ortho oncology surgeon thinks sarcoma is likely to re-occur as it is metastatic, and he possibly did not get it all. He told me I may have further radio therapy. If it does re-occur he has to weigh up between a collostomy and treating me with trabectedin/yondelis. I would certainly question why a collostomy as he would be removing part of the bowel as a precaution. People have survived much worse than I have without resorting to such radical methods. Given overlapping urology symptoms, swelling and adenopathy, if all are sarcoma related I've had sarcoma for a long time and it's already spread to where ever it's going to spread to.... probably small benign looking conditions that suddenly decide grow. I tend to think that radiotherapy or antibiotics in February, provided the trigger and the signal to cause sudden rapid growth of the sarcoma between March and August. Something triggered growth during February/March anyway. I'll post more on my speculations and medical history in my other blog Sarcoma Insight when I'm able to sit a bit more.
Right now I have normal mobility and generally feel ok. I do wake up with body wide aches and pains and have a temperature at times. I have to avoid sitting upright for prolonged periods. I'm not sure how long for. I've known people who've had surgery for urology probloms being told to avoid sitting for long periods for 3 months following surgery. The wound was fairly massive, a 10cm hole takes a lot of healing and filling. My backside is shrinking and changing shape on a daily basis. I've written this small peices at a time, taking frequent breaks and access the internet througout the day from my notebook lying on my side, though it does get rather tiring typing like that. In the meantime I'm enjoying reading a few books and delving into my cd collection.
Many thanks to those who've sent me their best wishes or offered their prayers. I'm quite moved and very encouraged by them. I've still a couple of people to reply to and will do so in the next few days.
thanks and best wishes
Rob.
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