Little bit concerned today with the INR. No, that isn’t some new undercover taxation squad introduced by Gordon "Tax ‘em till they bleed" Brown (he was the mildest manner'd man, that ever scuttled ship or cut a throat - Lord Byron), it’s the blood level indicator which shows how much rat poison you should be taking. Apparently the acceptable range for this test is between 2.0 and 3.0 and dosages are adjusted accordingly so that this can be achieved over a period of time. There was much clucking a couple of weeks ago when mine went up to 4.2 as it is thought to be a bad thing if your blood does not clot because if you bleed, your body can empty itself of this rather necessary fluid.
As I sat in Dracula’s castle this morning, stupidly trying to predict the eventual LED readout figure I was willing my blood to be right so that I didn’t have yet more visits if it had gone high or low. I am quite proud of my ability to do this and had decided that today I would make my blood a comfortable 2.7. Clearly my concentration level must have slipped because after they beep, the somewhat disconcerting number 6.1 appeared on the screen of the bloodometer. During their training, nurses are taught to gasp almost noiselessly but for the trained eye like mine you can look for dilation of the pupils. This is way too high and warfarin is off the menu until Friday at least when I go back for another check.
As is my practice, I starting doing a bit of research into high INR levels as soon as I got home. If you search "INR levels" on Google the first listing is a study of mortality rates and INR levels but thankfully this is for Sweden so it doesn’t apply to me. Further research indicates that this is one of those complicated fields which is full of statistical analysis i.e. it’s boring so should be left to the Wizards who enjoy reading this sort of stuff when relaxing in the evenings.
I briefly considered putting on loads of quilted skiing gear so that I could avoid bumping into sharp corners in the kitchen. Unfortunately it was 24 degrees outside so that was a non starter. Bleeding profusely would make me light headed but being too hot turns me into one of the most evil tempered bastards on earth. No brainer. I’ll just have to be careful till the all clear siren goes.
Sunday, April 12, 2009
Friday, April 10, 2009
Cancer is Marvellous
Cancer is Marvellous. It does admittedly have it's drawbacks, but it can do the impossible. I spent most of the second half of the 20th Century, firmly convinced, that although I knew a tiny number of people who deserved the accolade "human being", the vast majority of the population were really just wasting perfectly good oxygen. Greed, violence, misery and spite have not only become the norm, it seems to be what people actually aspire to. I'm not just talking about those who want to achieve at the expense of others - it's the ordinary folk who all just want. They want money, possessions, recognition, more possessions and everything seems to revolve around rights.
Everyone seems to believe that their "rights" are somehow God given and that they must claim their "rights" at every given opportunity. It gets worse all the time here in the UK but please do not get me started on the US! God knows how things will break down when the last remaining unqualified US citizen gets his/her law degree and there's nobody left to represent. Other than in real extremes, misery in our western affluent society is almost completely self imposed and inflicted. My attitude has basically been - if you are that unhappy with your lot just go. I don't mean, go abroad or go away from here I mean seriously GO. It didn't take the last few years living with screwed up cells to convince me that life is really a pretty damn good thing to participate in. You don't want to? Fine - quit, and for God's sake, when you're going - don't moan about it. O.K, having established my general view of value of homo sapiens I'll come to my point.
Cancer has let me find a much larger than expected number of people with whom I'm really happy to share the planet. Having done the maths, I know that if extrapolated world wide there would still only be enough of them to fill a pretty small cul de sac, but nevertheless it was a shock. I still think it would be sensible to nuke everyone outside this group of people but no doubt there will be detractors to that proposition. I've just come into contact with almost exclusively good people since my first diagnosis. I don't mean goody goodies, I mean down to earth, honest, caring, good.
I've talked about a few of them in other parts of this site but I'll give you another example. I was recently referred by my Macmillan alien to an occupational therapist. Never having had cause to think about this term I vaguely thought they were the people who rubbed deep heat ointment on injured footballers thighs. A brief scan of my mental database picked up the word physio in relation to the footballing function so I had to reclassify the ones of the occupational variety. A very affable lady turned up at our house to discuss how life could be improved bearing in mind my condition and prognosis. As the conversation went on she made some interesting observations and suggestions and I increasingly began to think that her visit was far from the waste of time I had feared.
I also began to gain the distinct impression that I would not like to be in an organisation which was standing in the way of her protecting the interests of one of her clients. Not without a pump action shotgun I wouldn't. Events following this meeting have confirmed to me that indeed, none of the local bureaucracies issue shotguns to their personnel. She is a wand waver.
Everyone seems to believe that their "rights" are somehow God given and that they must claim their "rights" at every given opportunity. It gets worse all the time here in the UK but please do not get me started on the US! God knows how things will break down when the last remaining unqualified US citizen gets his/her law degree and there's nobody left to represent. Other than in real extremes, misery in our western affluent society is almost completely self imposed and inflicted. My attitude has basically been - if you are that unhappy with your lot just go. I don't mean, go abroad or go away from here I mean seriously GO. It didn't take the last few years living with screwed up cells to convince me that life is really a pretty damn good thing to participate in. You don't want to? Fine - quit, and for God's sake, when you're going - don't moan about it. O.K, having established my general view of value of homo sapiens I'll come to my point.
Cancer has let me find a much larger than expected number of people with whom I'm really happy to share the planet. Having done the maths, I know that if extrapolated world wide there would still only be enough of them to fill a pretty small cul de sac, but nevertheless it was a shock. I still think it would be sensible to nuke everyone outside this group of people but no doubt there will be detractors to that proposition. I've just come into contact with almost exclusively good people since my first diagnosis. I don't mean goody goodies, I mean down to earth, honest, caring, good.
I've talked about a few of them in other parts of this site but I'll give you another example. I was recently referred by my Macmillan alien to an occupational therapist. Never having had cause to think about this term I vaguely thought they were the people who rubbed deep heat ointment on injured footballers thighs. A brief scan of my mental database picked up the word physio in relation to the footballing function so I had to reclassify the ones of the occupational variety. A very affable lady turned up at our house to discuss how life could be improved bearing in mind my condition and prognosis. As the conversation went on she made some interesting observations and suggestions and I increasingly began to think that her visit was far from the waste of time I had feared.
I also began to gain the distinct impression that I would not like to be in an organisation which was standing in the way of her protecting the interests of one of her clients. Not without a pump action shotgun I wouldn't. Events following this meeting have confirmed to me that indeed, none of the local bureaucracies issue shotguns to their personnel. She is a wand waver.
Sunday, April 05, 2009
Low Carb Diet Side Effects
Some of these low carb diet side effects can be problematic for people with health conditions, particularly if they're taking medications for those conditions. Often the side effects are good, but you need to be aware they can happen and talk to your medical care provider because they'll need to monitor your progress and possibly change, reduce, or eliminate medications as you progress.
For instance, a very common low carb diet side effect is lowered, or more even blood sugar levels. This is an important low carb diet side effect for any diabetic, particularly ones that take insulin shots or medication.
Since low carb diets can drastically reduce your blood sugar levels naturally, your doctor may need to adjust your medication levels to compensate for those changes. Another low carb diet side effect is of course losing a lot of weight.
This by itself is not technically a side effect, but related effects of losing weight can include regulation of blood pressure, easing or disappearance of digestive tract problems, and resolution of breathing problems too.
There are some low carb diet side effects that are not harmful, but you need to be aware of them because they are uncomfortable at best. These low carb diet side effects are more common during the first one to five days on the diet, and are side effects of your body adjusting to your eating changes. These side effects can include headaches; nausea; dizziness; lethargy or low energy; severe sugar cravings; irritability; and constipation.
For instance, a very common low carb diet side effect is lowered, or more even blood sugar levels. This is an important low carb diet side effect for any diabetic, particularly ones that take insulin shots or medication.
Since low carb diets can drastically reduce your blood sugar levels naturally, your doctor may need to adjust your medication levels to compensate for those changes. Another low carb diet side effect is of course losing a lot of weight.
This by itself is not technically a side effect, but related effects of losing weight can include regulation of blood pressure, easing or disappearance of digestive tract problems, and resolution of breathing problems too.
There are some low carb diet side effects that are not harmful, but you need to be aware of them because they are uncomfortable at best. These low carb diet side effects are more common during the first one to five days on the diet, and are side effects of your body adjusting to your eating changes. These side effects can include headaches; nausea; dizziness; lethargy or low energy; severe sugar cravings; irritability; and constipation.
Saturday, April 04, 2009
Radio And Chemo
So the docs announce that to make you feel better, you are going to be nuked. For good measure they intend to fill you full of some seriously nasty chemicals which you are going to volunteer to carry around with you in a little bottle which will be attached to you via a tube. To make it easy they will put a plug in your chest with a tube which goes up to your head so the chemo can be with you 24/7. Oh and would you mind doing it for say, 5 months? It doesn't get much better than that.
Now here is where there's a real doozy of a question. Do you accept their very attractive offer or not. Hmm. Hair may fall out, bits may fall off, you'll be dead tired and sleep all the time plus you may get a bit ratty. But surely there must be a down side. Yep you'll probably lose a load of weight. No brainer!
Now wait for this. No bits fell off. Often felt pretty tired but not enough to stop me from going to my local bar/restaurant, using the internet and generally enjoying life. My "Borg implant" as my daughter calls it (the place where the chemo is delivered into my system) was no problem. Did my hair fall out? I started to go grey about 30 years ago but after 3 months my wife suddenly started laughing and eventually told me I looked like Mr Spock. My hair had gone thick and turned almost jet black! No doubt you will find it impossible to believe that someone with such a sunny disposition as mine, could become irritable. Strangely enough my wife disagreed. Perhaps just a couple of times I .........
Just remembered something really funny. Having had my chemo pump for a couple of days (most people don't have these apparently) I woke up to find that in my sleep I had caught the tube and it had become disconnected. Even my basic physics confirmed that it was likely that the red stuff on the sheets was the liquid that was supposed to stay inside my body and not come out throught the tube. I was a tad concerned at this because I know you only have a limited amount of this stuff and its quite important that you hang on to quite a lot of it.
The telephone advice from the hospital was to clean and reconnect it (implying, you dumbo - of course it's not normal). No panic, just pop in when you have a minute and we'll have a look. Moral of this little bit is to forget everything you have seen on TV. When you get used to all sorts of different bits of kit attached to your body they lose their mystique. I can't bleed my central heating boiler but I sure as hell know how to regulate a drip.
Now here is where there's a real doozy of a question. Do you accept their very attractive offer or not. Hmm. Hair may fall out, bits may fall off, you'll be dead tired and sleep all the time plus you may get a bit ratty. But surely there must be a down side. Yep you'll probably lose a load of weight. No brainer!
Now wait for this. No bits fell off. Often felt pretty tired but not enough to stop me from going to my local bar/restaurant, using the internet and generally enjoying life. My "Borg implant" as my daughter calls it (the place where the chemo is delivered into my system) was no problem. Did my hair fall out? I started to go grey about 30 years ago but after 3 months my wife suddenly started laughing and eventually told me I looked like Mr Spock. My hair had gone thick and turned almost jet black! No doubt you will find it impossible to believe that someone with such a sunny disposition as mine, could become irritable. Strangely enough my wife disagreed. Perhaps just a couple of times I .........
Just remembered something really funny. Having had my chemo pump for a couple of days (most people don't have these apparently) I woke up to find that in my sleep I had caught the tube and it had become disconnected. Even my basic physics confirmed that it was likely that the red stuff on the sheets was the liquid that was supposed to stay inside my body and not come out throught the tube. I was a tad concerned at this because I know you only have a limited amount of this stuff and its quite important that you hang on to quite a lot of it.
The telephone advice from the hospital was to clean and reconnect it (implying, you dumbo - of course it's not normal). No panic, just pop in when you have a minute and we'll have a look. Moral of this little bit is to forget everything you have seen on TV. When you get used to all sorts of different bits of kit attached to your body they lose their mystique. I can't bleed my central heating boiler but I sure as hell know how to regulate a drip.
Wednesday, April 01, 2009
Everything Needs a Disclaimer
The truth is that this blog is my story, my egocentric ethnocentric version of what I see. What I don't see or don't understand has no place here. Unfortunately those of you who read this hoping for some window into what it must be like at Bottom Hospital or in Malawi or in Africa are peering through a very very small window where I am the protagonist. Keep that in mind and your grains of salt close at hand.
I'm just feeling down today. A low grade kind of down that doesn't do any real harm but just leaves me a bit uncomfortable in my skin. I don't believe my life's extreme highs and lows have ever cycled with comparable swiftness and frequency. I find it difficult and exhausting to be present with heart. I find it difficult to comprehend and satisfactorily file away what I witness. All in all yesterday was a good day at the labor ward, all the women and babies I assisted left the ward healthy and happy. But, even on good days there is so much that blows through my mind making chaotic pathways as visions rip through old assumptions and carefully protected "truths".
The list of shocking events is endless and ranges from watching a very experienced clinician brutally execute a vaginal exam to the absurdity of categorizing all laboring women as high-risk (including the obviously low-risk, the rational being that anything can happen at any time in labor), but then not carrying out necessary interventions with the truly high-risk women to avoid devastating consequences. Although I know that I will continue to write about these events and although it is certainly therapeutic for me to release all these stories on to these pages, I also doubt the absolute value in doing just that. I wonder if in some way I am also perpetrating an injustice by painting such a clearly lop-sided picture. After reading these stories, can you still have compassion and openness in your hearts not only for the women and babies but also for the nurses and other clinicians?
Despite the frustration I feel when I witness the way in which some of them practice, I do have hope that practice will change. Not only in the distant future, as the next generation of clinicians rises to take posts, but soon. I do have hope that the clinicians practicing now will also improve. A couple weeks ago the charge nurse (the only clinically practicing registered nurse in the entire hospital) told me, "Joanne, I hope that when you go back to your country you will tell them how hard we work. People are always coming here and then saying horrible things about Malawi and our work here." I'm sure she would count my blog among those horrible things. So let me say now, that the nurses and midwives here work HARD.
That is the truth. There is no one who sits and chats the day away. These women do work. And, the charge nurse, in particular, is someone I respect. At one point yesterday morning, as we were getting the handover from the night nurse, we stood around a bed with a recently delivered mom trying to breastfeed her screaming baby. The charge nurse picked up the baby comforted him and then put him on his mom's breast without saying a word.
I met Clement for lunch today and told him the most recent stories that left me tearful and frustrated. He listened and then told be about the source of his own motivation for becoming a clinical officer, which helped bring me back to the fundamentals. He said it comes from the experiential knowledge of being a patient here . . . knowing what it is to feel true hunger, knowing how much effort it took to get to the clinic, knowing how it feels to stand most of the day in a long que, believing that you are truly dying, watching clinicians move unhurriedly by, and then when you finally reach "help", having the clinician hand you a prescription for a simple over the counter pain killer without doing any type of exam, before you even finish telling him about your complaint. After saying this, he said he knows he will not change the system, but that he can still provide good care within the system and that is the goal. Personally, I have never experienced any those things, but I suppose if I can prevent a few others from also experiencing them, then I will have done something good.
These days too many of my stories are sad. I want to laugh until my belly aches.
I'm just feeling down today. A low grade kind of down that doesn't do any real harm but just leaves me a bit uncomfortable in my skin. I don't believe my life's extreme highs and lows have ever cycled with comparable swiftness and frequency. I find it difficult and exhausting to be present with heart. I find it difficult to comprehend and satisfactorily file away what I witness. All in all yesterday was a good day at the labor ward, all the women and babies I assisted left the ward healthy and happy. But, even on good days there is so much that blows through my mind making chaotic pathways as visions rip through old assumptions and carefully protected "truths".
The list of shocking events is endless and ranges from watching a very experienced clinician brutally execute a vaginal exam to the absurdity of categorizing all laboring women as high-risk (including the obviously low-risk, the rational being that anything can happen at any time in labor), but then not carrying out necessary interventions with the truly high-risk women to avoid devastating consequences. Although I know that I will continue to write about these events and although it is certainly therapeutic for me to release all these stories on to these pages, I also doubt the absolute value in doing just that. I wonder if in some way I am also perpetrating an injustice by painting such a clearly lop-sided picture. After reading these stories, can you still have compassion and openness in your hearts not only for the women and babies but also for the nurses and other clinicians?
Despite the frustration I feel when I witness the way in which some of them practice, I do have hope that practice will change. Not only in the distant future, as the next generation of clinicians rises to take posts, but soon. I do have hope that the clinicians practicing now will also improve. A couple weeks ago the charge nurse (the only clinically practicing registered nurse in the entire hospital) told me, "Joanne, I hope that when you go back to your country you will tell them how hard we work. People are always coming here and then saying horrible things about Malawi and our work here." I'm sure she would count my blog among those horrible things. So let me say now, that the nurses and midwives here work HARD.
That is the truth. There is no one who sits and chats the day away. These women do work. And, the charge nurse, in particular, is someone I respect. At one point yesterday morning, as we were getting the handover from the night nurse, we stood around a bed with a recently delivered mom trying to breastfeed her screaming baby. The charge nurse picked up the baby comforted him and then put him on his mom's breast without saying a word.
I met Clement for lunch today and told him the most recent stories that left me tearful and frustrated. He listened and then told be about the source of his own motivation for becoming a clinical officer, which helped bring me back to the fundamentals. He said it comes from the experiential knowledge of being a patient here . . . knowing what it is to feel true hunger, knowing how much effort it took to get to the clinic, knowing how it feels to stand most of the day in a long que, believing that you are truly dying, watching clinicians move unhurriedly by, and then when you finally reach "help", having the clinician hand you a prescription for a simple over the counter pain killer without doing any type of exam, before you even finish telling him about your complaint. After saying this, he said he knows he will not change the system, but that he can still provide good care within the system and that is the goal. Personally, I have never experienced any those things, but I suppose if I can prevent a few others from also experiencing them, then I will have done something good.
These days too many of my stories are sad. I want to laugh until my belly aches.
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