Maybe that's being premature, but it's better news than I've had all week.
I had a call this morning from my oncologist, who was planning to come and see me this afternoon. He's not now, due to the fact that he dislocated his shoulder at Mt Buller yesterday. He told me that he didn't think it was too late to start a secondary course of chemotherapy and that I should make an appointment to see him at Cabrini when I get out of Monash, which is looking like being on Wednesday.
In any case, it was good to hear something other than pessimism from a medical professional.
Sunday 31 July 2011
Saturday 30 July 2011
It won't be a problem for me
If, despite my best efforts to beat this insidious disease, it does actually beat me, I'm not worried at all for my own fate. I'll be gone, dead, having left behind all my worldly woes. It's the people in my life who I love and who love me that I'm worried about.
There's the husbands and wives and the unmarried life partners who are left behind to pick up the pieces of their lives, often without the benefit of much support to help them. We all make plans with our partners and it's a tragedy when time runs out before those plans get the chance to come to fruition. All we can do is our best to make sure affairs are in order to minimize the possibly of an intestate estate delaying the vital funds a person needs when they lose their partner.
No parent ever expects or wants their child to predecease them, no matter if that child is 4 or 40. It would be one of the most emotionally scarring events in their lives, that they would live with forever. Sure, time would heal the wounds to a degree, but still...
Then there are all the other family members. Sisters, brothers, nieces, nephews, who may be too young to understand what's going on. Grandparents, especially the WWII generation have seen harder times and lost more of their families than most of the rest the population. That said, they are not so inured by loss that their memories of grandchildren arriving and all that goes with being a favourite Nanna or Pa leaves them unaffected. In all likelihood, the stoic attitude of that generation can hide deep grief.
Brothers and sisters who grew up together, never would have imagined that their sibling would one day get sick and die prematurely. It's hard all round - except for the one who's actually dead or dying.
Then of course are all the friends, close and merely acquainted. A good friend dying leaves a huge gap in a person's life.
These are the people I worry about more than me. As I say, if the worst comes to worse, I'll never even know, but for everyone else, it's the start of a whole new world of grief and pain that will last for as long as it lasts.
It's nice to be remembered, but nobody wants to be the cause of all that grief.
There's the husbands and wives and the unmarried life partners who are left behind to pick up the pieces of their lives, often without the benefit of much support to help them. We all make plans with our partners and it's a tragedy when time runs out before those plans get the chance to come to fruition. All we can do is our best to make sure affairs are in order to minimize the possibly of an intestate estate delaying the vital funds a person needs when they lose their partner.
No parent ever expects or wants their child to predecease them, no matter if that child is 4 or 40. It would be one of the most emotionally scarring events in their lives, that they would live with forever. Sure, time would heal the wounds to a degree, but still...
Then there are all the other family members. Sisters, brothers, nieces, nephews, who may be too young to understand what's going on. Grandparents, especially the WWII generation have seen harder times and lost more of their families than most of the rest the population. That said, they are not so inured by loss that their memories of grandchildren arriving and all that goes with being a favourite Nanna or Pa leaves them unaffected. In all likelihood, the stoic attitude of that generation can hide deep grief.
Brothers and sisters who grew up together, never would have imagined that their sibling would one day get sick and die prematurely. It's hard all round - except for the one who's actually dead or dying.
Then of course are all the friends, close and merely acquainted. A good friend dying leaves a huge gap in a person's life.
These are the people I worry about more than me. As I say, if the worst comes to worse, I'll never even know, but for everyone else, it's the start of a whole new world of grief and pain that will last for as long as it lasts.
It's nice to be remembered, but nobody wants to be the cause of all that grief.
Back in Hospital for some bad news.
Having been home from hospital for a few weeks, I was expecting to have had my various lung infections cleared up and be back on track, nutrition-wise. However, I was still not able to eat or drink anything. I could manage lemonade icy poles and iced water, and that was about it. Even then, I'd cough up phlegm from my lungs. Naturally, I assumed that I still had some residual lung infection.
That wasn't the whole story though. I called my GP and told her how I was getting by on around 100 calories a day and losing weight fast. I'd gone from around 130kg to 75kg in six months with 13kg lost in the past month alone. I asked her to call my Gastroenterologist at Monash and see what to do. He said to get straight to Monash for a gastroscope and a feeding tube insertion.
The GP arranged for the ambulance to pick me up and bring me to Melbourne.
All seemed like it would be ok until after the gastroscope. The doctor gave me the grim news that he thought the cancer had returned. Six weeks prior, at the last gastroscope, all looked clear and on the way to healing. Now the stomach was inflamed and there was evidence of a hole leading directly from the stomach to the lung. This, he thought was a direct result of the cancer returning and had probably been brewing in the background for a while. In any case, it explained why I constantly had fluid on the lungs and was hacking up phlegm all the time. The lung and stomach were touching each other and the cancer had made a direct conduit between the two.
I asked the doctor what all this meant in terms of a revised life expectancy. He said "weeks". As I was still coming out from under the anesthetic, I didn't really take it in straight away.
The following few days involved my parents coming down from Sydney and lots of other questions to the doctors about further treatment options. The doctors here at Monash, as well as my surgeon didn't hold out any hope for further treatment, saying that any more surgery would be essentially futile and more chemotherapy would most likely be fatal, especially if I was to develop another lung infection while my immune system was being compromised by the chemotherapy. Radiation was also out of the question as I have already had the maximal dose of radiation therapy last year.
So, I have two choices. The first and easiest is to roll over and accept the bad news and wait to die, or explore my options. Not being ready to die, I've decided to explore my options.
I've asked the doctors to suggest other specialists for me to consult regarding a second opinion, both in Melbourne and Sydney.
There is an oncologist known to the family in Sydney who has kept my cousin alive for seven years after initially giving her six months to live with stage four breast cancer. I will make an appointment to see him as soon as possible with a view to getting some treatment underway.
I know the odds may be stacked against me with this, but they always have been. It comes down to those two choices. Roll over and accept death or fight it and maybe survive for years to come. We all know of people who've defied the odds and beat cancer despite being given a grave prognosis. Why not me too?
That wasn't the whole story though. I called my GP and told her how I was getting by on around 100 calories a day and losing weight fast. I'd gone from around 130kg to 75kg in six months with 13kg lost in the past month alone. I asked her to call my Gastroenterologist at Monash and see what to do. He said to get straight to Monash for a gastroscope and a feeding tube insertion.
The GP arranged for the ambulance to pick me up and bring me to Melbourne.
All seemed like it would be ok until after the gastroscope. The doctor gave me the grim news that he thought the cancer had returned. Six weeks prior, at the last gastroscope, all looked clear and on the way to healing. Now the stomach was inflamed and there was evidence of a hole leading directly from the stomach to the lung. This, he thought was a direct result of the cancer returning and had probably been brewing in the background for a while. In any case, it explained why I constantly had fluid on the lungs and was hacking up phlegm all the time. The lung and stomach were touching each other and the cancer had made a direct conduit between the two.
I asked the doctor what all this meant in terms of a revised life expectancy. He said "weeks". As I was still coming out from under the anesthetic, I didn't really take it in straight away.
The following few days involved my parents coming down from Sydney and lots of other questions to the doctors about further treatment options. The doctors here at Monash, as well as my surgeon didn't hold out any hope for further treatment, saying that any more surgery would be essentially futile and more chemotherapy would most likely be fatal, especially if I was to develop another lung infection while my immune system was being compromised by the chemotherapy. Radiation was also out of the question as I have already had the maximal dose of radiation therapy last year.
So, I have two choices. The first and easiest is to roll over and accept the bad news and wait to die, or explore my options. Not being ready to die, I've decided to explore my options.
I've asked the doctors to suggest other specialists for me to consult regarding a second opinion, both in Melbourne and Sydney.
There is an oncologist known to the family in Sydney who has kept my cousin alive for seven years after initially giving her six months to live with stage four breast cancer. I will make an appointment to see him as soon as possible with a view to getting some treatment underway.
I know the odds may be stacked against me with this, but they always have been. It comes down to those two choices. Roll over and accept death or fight it and maybe survive for years to come. We all know of people who've defied the odds and beat cancer despite being given a grave prognosis. Why not me too?
Monday 11 July 2011
Bloody Candida Again
For the past month, I've been coughing and sputtering from what I thought was just some run of the mill chest infection. As it turned out, it was a return of that evil candida fungus. This time, it wasn't just causing painfully annoying mouth ulcers, but being in the lungs, actual pneumonia.
I called my doctor a couple of weeks ago to tell her they the antibiotics I was on didn't seem to be working and despite being on stronger and stronger antibiotics, it seemed to be getting worse. She told me I should go to hospital for some tests and to have some IV antibiotics. That sounded like a good idea.
I called an ambulance to take me to Wonthaggi Hospital. They took lots of blood for testing and admitted me to a private room to isolate me in case I was contagious. Some tests take longer than others. The one for fungal infection took three days. So, after three days in hospital, we finally knew what to treat - candida. A course of fluconozole seemed to do the trick and both the coughing and highly coloured phlegm reduced dramatically, to the point where they sent me home. Now after finishing that course, it's starting to reassert itself already. Luckily I have another course waiting to be picked up from the chemist.
It worries me, though that it should come back so quickly after being assured by the Dr at the hospital that only one course was necessary, I appear to need more medication.
I should find out where I can get this stuff - pau d-arco. Looks like it has both anti candida and anti cancer properties.
Pau d-arco
I called my doctor a couple of weeks ago to tell her they the antibiotics I was on didn't seem to be working and despite being on stronger and stronger antibiotics, it seemed to be getting worse. She told me I should go to hospital for some tests and to have some IV antibiotics. That sounded like a good idea.
I called an ambulance to take me to Wonthaggi Hospital. They took lots of blood for testing and admitted me to a private room to isolate me in case I was contagious. Some tests take longer than others. The one for fungal infection took three days. So, after three days in hospital, we finally knew what to treat - candida. A course of fluconozole seemed to do the trick and both the coughing and highly coloured phlegm reduced dramatically, to the point where they sent me home. Now after finishing that course, it's starting to reassert itself already. Luckily I have another course waiting to be picked up from the chemist.
It worries me, though that it should come back so quickly after being assured by the Dr at the hospital that only one course was necessary, I appear to need more medication.
I should find out where I can get this stuff - pau d-arco. Looks like it has both anti candida and anti cancer properties.
Pau d-arco
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