Second biopsy
For some reason I don’t remember much about the second biopsy – the memories are not as clear as the first biopsy. Maybe it’s because it all started to blur together, too much of the same old same old – who would have thought, that such a major life experience as an operation, could become blurred because you’ve done it before?! I think most of it went along the same lines as the first, except that I went in the night before the operation, and so avoided all that waiting around in the Day Surgery.
Actually, it was quite irritating – we had cut our trip to Mackay short because I needed this second biopsy, and yet when we returned to Brisbane, I still hadn’t been booked into hospital. We spent over a week kicking our heels waiting for the letter from the hospital, telling me when I should be going in.
Nonetheless, I went into hospital the day before the operation, and had all the little ‘chats’ – with the anaesthetist, and my dear friend Dr Huang, the night before. It was very bizarre, the evening before, I had this urge for chocolate (me? Chocolate? Never…) and because I was not attached to any machines or anything really – I wasn’t even in pyjamas! – there didn’t seem to be any reason why I couldn’t go walkabout and look for a vending machine. I felt kind of like an escapee, wandering the halls of a practically deserted hospital at night, looking for a vending machine. By the time I actually found it (you know, past the operating theatres, down the lift to the ground floor, around through the old part of the hospital, past the work on the new part, down several long and deserted hallways, hidden behind a stair case – the usual rabbit warren that is Greenslopes Private Hospital) I was ridiculously pissed off because there were no longer any bloody Mars Bars!
Anyway, I took my sleeping pills like a good little girl the night before, and then again the next morning, scrubbed up, and went into theatre that afternoon. The ‘siding’ – the place where everyone awaiting theatre waits, all scrubbed and prepared, I have always found to be kind of difficult. The only way I can keep completely calm and detached (which probably isn’t a good thing, since I don’t actually deal with any emotions which may arise) is to read, and I can no longer take books into the siding. I’ve always asked the nurses on duty there for a magazine, and there always seems to be something trashy lying around… I have read more trashy magazines since I got sick than ever before in my life! It keeps my mind occupied, but not on anything taxing.
The main difference between my two biopsies was that I didn’t go to intensive care after the second time. I don’t think this was a good thing, because it took me much longer to recover because I tried to do too much too soon, but the reason I didn’t go in was entirely my fault and a typically Jessie thing to do to boot.
Following this operation, mama was nowhere to be found (not her fault, I was in ‘recovery’ – or the siding for post surgery people!). I woke up slightly earlier than usual, and demanded that someone come to hold my hand. As luck would have it, there was a rather dishy male nurse working at the time, and he held my hand and sat beside me for about half an hour. I made a considerable effort to wake up and be slightly more perky than unconscious, and APPARENTLY (I can’t really deny it, since it’s in my nature, like breathing and Mars Bars) I was flirting and so they assumed I was well enough to not need to go into ICU.
It took a lot longer this time for my lung to repair itself, and I was a lot weaker. On the plus side, I was no longer so anxious about the tube thing, so I demanded it be taken out pretty much the day after the operation, so my pain levels (excluding breathing difficulties) were a fair bit lower. I was in for about a week this time, and the hardest part was the waiting for the biopsy results. We didn’t want a debacle like the last one, with no results, so I did a fair bit of nagging for the outcome.
Unfortunately Dr Tam (and thus his registrar, Dr Huang) is a chest surgeon, and is used to dealing with dicky hearts and other chest problems, not obscure cancerous tumours. So I suppose it is understandable that they couldn’t answer my questions about what the hell is this thing in my chest, and what the hell are you going to do about it. Understandable on a rational level, perhaps, but when you’re lying around in a hospital with no idea what’s wrong with you, it’s not so good.
I think the crunch came when I had been told for the third time that the biopsy results were still not through and that they STILL did not know what was happening. I was still attached to the pethidine PCA and it kept malfunctioning and beeping. I was very fed up after this last unproductive visit to tell me that we had no idea, so we went down to the coffee shop (me in a wheelchair) to get away from it all.
Away from the ward, mama turned her mobile phone on and when it started madly beeping, she went outside to listen to her messages. At which point my machine started beeping like mad, and I found myself stranded in a corridor, making a huge amount of noise, and unable to do anything about it. A nurse wandered by, but informed me that she was not allowed to touch my PCA machine – insufficiently qualified. Finally someone came along who was prepared to wheel me back to my ward, which she did – and then left me in the corridor in the ward, still making noise, still basically stranded!
And then Dr Huang came along… what timing. I am seriously PISSED off, and looking for someone to take it out on (it’s a fault of mine, I admit it). And here’s Dr Huang, perfect scapegoat, hasn’t been able to tell me what I want to know, and he just happens to rock up at the wrong time… So I had a bit of a tirade at him, cried, got VERY stroppy, put forward my perspective very forcefully, told him that he was NOT helping me, and amazingly, he just stood there and listened to me. I bet the old men with dicky tickers don’t yell at him very often.
Finally, someone took me back to my room. This little tirade of mine was probably very healthy, given that it was an expression of something vaguely resembling emotion, and not the detached, rather black humour I had been using to get through it all. Given that I am such an emotionally driven person (just ask Rich), it was very strange for me to be so emotionally detached from all that was happening.
The other positive outcome of my little tirade is that Dr Huang went to go find the oncologist’s registrar to come and talk to me. (Oncologists are the cancer dudes – I mean cancer doctors.) He went through everything with me, and that evening the biopsy results came through.
Once again came the evidence that Dr Tam and Dr Huang are used to dealing with a) old men who don’t argue back as much as young stroppy women and b) unconscious people. As I’ve pretty much said all along, Dr Tam and I get along much better when I’m unconscious! Dr Tam wandered in during his rounds and basically said “We’ve got the biopsy results. It’s not a lymphoma like we thought, but the cells are basically neuroendocrine carcinomas, which are definitely cancerous. This means that next Tuesday (it was a Thursday) you’ll come back, I’ll cut you from collarbone to navel, saw through the breastbone, jack open the ribs, and cut out as much as I can”. Unsurprisingly, I crumpled into tears.
From Hodgkins lymphoma, with it’s 80-90% chance of survival, to this obscure cancer – basically, a thymic neuroendocrine carcinoma is small-cell lung cancer, but not in the lungs, it’s in the thymus gland. The thymus gland – which is different to the thyroid! – as far as I can tell, controls the stem cells and tells them what to do and what to become in order to fight infection. As I expressed it in an early email,
“I don't have Hodgkins Disease, or even a lymphoma. This is bad, because I'd dealt with the whole lymphoma thing, and the prognosis was so good (90% survival). Instead, I have a thymic neuro-endocrine carcinoma. :-) It's okay, I had absolutely no idea either. Basically, the tumour is in my thymus gland, which is like the instructor of the immune system, telling cells what anti-bodies they need to become in order to fight diseases. So, it's a thymoma. However, the cells in the tumour are neuro-endocrine carcinomas - usually found in little old men with lung cancer. Basically, I am a medical freak. What I have is very unusual - it really should not be there. Unfortunately, it is, and because no one has ever had it before (there may be one or two other weirdos out there, but there are VERY FEW), there is no known treatment. Thus, I cannot say that there is an 80% survival rate, or any prognosis at all, because the experts don't know what it is, any my treatment is largely experimental.”
Basically, that’s the medical stuff insofar as I’m going to go into it. There is a lot of information out there about what is cancer, but that’s not what I’m trying to write about. I would prefer to leave it as a rare cancer that doesn’t fit into any boxes, and talk about the stuff that from my point of view, are more important. After all, I have four doctors to look after all the medical stuff!
So, it was official – I had cancer.
Actually, it was quite irritating – we had cut our trip to Mackay short because I needed this second biopsy, and yet when we returned to Brisbane, I still hadn’t been booked into hospital. We spent over a week kicking our heels waiting for the letter from the hospital, telling me when I should be going in.
Nonetheless, I went into hospital the day before the operation, and had all the little ‘chats’ – with the anaesthetist, and my dear friend Dr Huang, the night before. It was very bizarre, the evening before, I had this urge for chocolate (me? Chocolate? Never…) and because I was not attached to any machines or anything really – I wasn’t even in pyjamas! – there didn’t seem to be any reason why I couldn’t go walkabout and look for a vending machine. I felt kind of like an escapee, wandering the halls of a practically deserted hospital at night, looking for a vending machine. By the time I actually found it (you know, past the operating theatres, down the lift to the ground floor, around through the old part of the hospital, past the work on the new part, down several long and deserted hallways, hidden behind a stair case – the usual rabbit warren that is Greenslopes Private Hospital) I was ridiculously pissed off because there were no longer any bloody Mars Bars!
Anyway, I took my sleeping pills like a good little girl the night before, and then again the next morning, scrubbed up, and went into theatre that afternoon. The ‘siding’ – the place where everyone awaiting theatre waits, all scrubbed and prepared, I have always found to be kind of difficult. The only way I can keep completely calm and detached (which probably isn’t a good thing, since I don’t actually deal with any emotions which may arise) is to read, and I can no longer take books into the siding. I’ve always asked the nurses on duty there for a magazine, and there always seems to be something trashy lying around… I have read more trashy magazines since I got sick than ever before in my life! It keeps my mind occupied, but not on anything taxing.
The main difference between my two biopsies was that I didn’t go to intensive care after the second time. I don’t think this was a good thing, because it took me much longer to recover because I tried to do too much too soon, but the reason I didn’t go in was entirely my fault and a typically Jessie thing to do to boot.
Following this operation, mama was nowhere to be found (not her fault, I was in ‘recovery’ – or the siding for post surgery people!). I woke up slightly earlier than usual, and demanded that someone come to hold my hand. As luck would have it, there was a rather dishy male nurse working at the time, and he held my hand and sat beside me for about half an hour. I made a considerable effort to wake up and be slightly more perky than unconscious, and APPARENTLY (I can’t really deny it, since it’s in my nature, like breathing and Mars Bars) I was flirting and so they assumed I was well enough to not need to go into ICU.
It took a lot longer this time for my lung to repair itself, and I was a lot weaker. On the plus side, I was no longer so anxious about the tube thing, so I demanded it be taken out pretty much the day after the operation, so my pain levels (excluding breathing difficulties) were a fair bit lower. I was in for about a week this time, and the hardest part was the waiting for the biopsy results. We didn’t want a debacle like the last one, with no results, so I did a fair bit of nagging for the outcome.
Unfortunately Dr Tam (and thus his registrar, Dr Huang) is a chest surgeon, and is used to dealing with dicky hearts and other chest problems, not obscure cancerous tumours. So I suppose it is understandable that they couldn’t answer my questions about what the hell is this thing in my chest, and what the hell are you going to do about it. Understandable on a rational level, perhaps, but when you’re lying around in a hospital with no idea what’s wrong with you, it’s not so good.
I think the crunch came when I had been told for the third time that the biopsy results were still not through and that they STILL did not know what was happening. I was still attached to the pethidine PCA and it kept malfunctioning and beeping. I was very fed up after this last unproductive visit to tell me that we had no idea, so we went down to the coffee shop (me in a wheelchair) to get away from it all.
Away from the ward, mama turned her mobile phone on and when it started madly beeping, she went outside to listen to her messages. At which point my machine started beeping like mad, and I found myself stranded in a corridor, making a huge amount of noise, and unable to do anything about it. A nurse wandered by, but informed me that she was not allowed to touch my PCA machine – insufficiently qualified. Finally someone came along who was prepared to wheel me back to my ward, which she did – and then left me in the corridor in the ward, still making noise, still basically stranded!
And then Dr Huang came along… what timing. I am seriously PISSED off, and looking for someone to take it out on (it’s a fault of mine, I admit it). And here’s Dr Huang, perfect scapegoat, hasn’t been able to tell me what I want to know, and he just happens to rock up at the wrong time… So I had a bit of a tirade at him, cried, got VERY stroppy, put forward my perspective very forcefully, told him that he was NOT helping me, and amazingly, he just stood there and listened to me. I bet the old men with dicky tickers don’t yell at him very often.
Finally, someone took me back to my room. This little tirade of mine was probably very healthy, given that it was an expression of something vaguely resembling emotion, and not the detached, rather black humour I had been using to get through it all. Given that I am such an emotionally driven person (just ask Rich), it was very strange for me to be so emotionally detached from all that was happening.
The other positive outcome of my little tirade is that Dr Huang went to go find the oncologist’s registrar to come and talk to me. (Oncologists are the cancer dudes – I mean cancer doctors.) He went through everything with me, and that evening the biopsy results came through.
Once again came the evidence that Dr Tam and Dr Huang are used to dealing with a) old men who don’t argue back as much as young stroppy women and b) unconscious people. As I’ve pretty much said all along, Dr Tam and I get along much better when I’m unconscious! Dr Tam wandered in during his rounds and basically said “We’ve got the biopsy results. It’s not a lymphoma like we thought, but the cells are basically neuroendocrine carcinomas, which are definitely cancerous. This means that next Tuesday (it was a Thursday) you’ll come back, I’ll cut you from collarbone to navel, saw through the breastbone, jack open the ribs, and cut out as much as I can”. Unsurprisingly, I crumpled into tears.
From Hodgkins lymphoma, with it’s 80-90% chance of survival, to this obscure cancer – basically, a thymic neuroendocrine carcinoma is small-cell lung cancer, but not in the lungs, it’s in the thymus gland. The thymus gland – which is different to the thyroid! – as far as I can tell, controls the stem cells and tells them what to do and what to become in order to fight infection. As I expressed it in an early email,
“I don't have Hodgkins Disease, or even a lymphoma. This is bad, because I'd dealt with the whole lymphoma thing, and the prognosis was so good (90% survival). Instead, I have a thymic neuro-endocrine carcinoma. :-) It's okay, I had absolutely no idea either. Basically, the tumour is in my thymus gland, which is like the instructor of the immune system, telling cells what anti-bodies they need to become in order to fight diseases. So, it's a thymoma. However, the cells in the tumour are neuro-endocrine carcinomas - usually found in little old men with lung cancer. Basically, I am a medical freak. What I have is very unusual - it really should not be there. Unfortunately, it is, and because no one has ever had it before (there may be one or two other weirdos out there, but there are VERY FEW), there is no known treatment. Thus, I cannot say that there is an 80% survival rate, or any prognosis at all, because the experts don't know what it is, any my treatment is largely experimental.”
Basically, that’s the medical stuff insofar as I’m going to go into it. There is a lot of information out there about what is cancer, but that’s not what I’m trying to write about. I would prefer to leave it as a rare cancer that doesn’t fit into any boxes, and talk about the stuff that from my point of view, are more important. After all, I have four doctors to look after all the medical stuff!
So, it was official – I had cancer.
posted by Jessie at 12:46 pm
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