It has been ages since I have posted an update sorry! Not much has been happening. I have been at home and am resting quite a lot. I finished my first cycle of chemo and started the second cycle on monday. I have had chemo everyday for the since monday and it is affecting me a lot more than my other cycle.
Monday: 8 hours of chemo and fluids
Tuesday: 3 hours (might have been 20 mins I don't actually remember)
Wednesday: Just an injection
Thursday: Injection again
then I have the same again next week. When you are given chemo you are given anti-sickness drugs to try and stop you from feeling sick (this is another side effect from the chemo). These don't tend to work too well with me and on wednesday I started vomiting. Gross thing was, I had eaten jelly beans just beforehand so I got all these half eaten jelly beans coming up and hitting my teeth on the way out of my mouth. So anyway I spewed three times in an hour and the ward said I should go to E.D. (we were at home at the time). So we drove to E.D. and mum had to pull over so I could spew again in the gutter. When we arrived at E.D. I was given Ondansatron (spelling?) which is the equivalent of morphine but is an anti sickness drug. It put me right and I was given a litre of fluids because of all the water I had spewed up.
My tastes have changed hugely again. I really like strawberries at the moment and deep fried chips. Everything else makes me feel sick. Oh one other side effect I don't think I have mentioned yet is that chemo creates a "metallic" taste in your mouth. It feels as though you are eating tinfoil or corrugated iron when you eat something so I tend to go for the really strong flavored stuff.
Anyway I better go, it is 1:30am and I am going to cook some steak.
Friday, November 27, 2009
Sunday, November 8, 2009
New
Sorry for the late update. My sisters test results came back from the donor screening place. Unfortunately they are not compatible with me. I am told there are 12 international leads they will follow up on, but it means my transplant will be later than expected (Jan instead of Dec). They need to contact these 12 people and find out if they still would like to be donors (they could've put their name down 10 years ago or something and have changed their mind) and then they need to be tested and retested to make sure everything is compatible. Then after that they will be asked if they want to donate stem cells or bone marrow. Stem cells are more preferred as they are infant cells and will take to the body easier but it is the donors decision. The doctors remain confident that a donor will be found and we are still aiming for the transplant in Jan.
I finished my first cycle of chemotherapy on friday. Each cycle is about 8 doses of chemo i think and I have one or two more cycles before the transplant. I am coping........ok with the chemo it is just really draining. I am constantly tired but hardly get any sleep because of the meds I am on and always have a sore gut. My hair is also still here! It is unusual, it should've started coming out by now. I have noticed that my fringe/brow is thinning though so its a start. I am anxious for it to fall out so I can just shave it off. I mean I would rather have no hair than desperately try to keep the thinning hair I have left.
I haven't done too much over the last few days. Just taking it easy at home. I have put on more weight (the doctors are very pleased about this, I was way too skinny) and now my injections aren't so painful thanks to the flab round my tummy. The district nurse still comes round every single morning to give me these injections, its more of a nuisance now than anything. I do have a massive pain threshold and my techniques for coping for pain are pretty awesome I reckon. I have been taught to put myself in a state of light-hypnosis and it actually really helps.
Hmmm what else to write.......... I guess I could tell the story of the fuck-up the hospital made. When I was supposed to be having my second dose of chemo I was told to be at the ward at 9am to talk to the doctors and receive some meds. I waited eight freaking hours to see a doctor and get chemo. eight. hours. I wasn't even allowed out of the ward for a second in case the doctors came while I was out. Auckland apparently hadn't shipped down my chemo in time and they had missed two more flights to get it down (the chemo only has a shelf life of 6 hours). To make matters worse, it was only a registrar who saw me and pretty much checked my breathing and gave me a once over. I didn't know what treatment I was having and what the plan was. I was in the dark about everything. So after waiting eight hours for this doctor I was given my lumbar puncture (chemo injected into the spinal cord fluid thing - ouch) and then was given my regular chemo. All went according to plan up until we were about to leave and mum just did a double check on my protocol. Turns out they had forgotten to give me one important chemo. It had been left in the drugs room and wasn't picked up because "there was a sticker on it". That sticker was a piece of scrap paper. What makes matters worse is that it is imperative I get chemo on the days I am registered for it. It all has fits inside this nice puzzle/timetable and one balls up and they have to change my protocol. After mum inquired about the chemo I didnt have the nurses went to find my protocol. They had lost it. They had lost my treatment plan. My original chemo treatment plan that lists all the drugs I need and the whole plan for everything. Fast forward a couple of hours they call the charge nurse from home in, we get an apology (fyi it was a very heartfelt apology) and we are assured it won't happen again. Hopefully you can follow the story haha it si not very well written...
It is so obvious though that the nurses and doctors are overworked at the hospital. Assigning one nurse to three or four patients that are receiving chemo is way too much of a work load. When you are being given chemo the nurse has to pay all her attention onto you. You are monitored before, during and after the chemo is administered and this means the nurse is with you the whole time. They can't manage three or four different people like this. Then I hear the government is cutting more nursing jobs so it is all going to turn to shit. I semi want to go up to the law makers and ask them what they would do in my position? Health care should be top priority to be honest. If Mr.Keys daughter/son was in hospital suffering from cancer I am sure he would think twice about cutting nurses jobs. End of political rant.
I finished my first cycle of chemotherapy on friday. Each cycle is about 8 doses of chemo i think and I have one or two more cycles before the transplant. I am coping........ok with the chemo it is just really draining. I am constantly tired but hardly get any sleep because of the meds I am on and always have a sore gut. My hair is also still here! It is unusual, it should've started coming out by now. I have noticed that my fringe/brow is thinning though so its a start. I am anxious for it to fall out so I can just shave it off. I mean I would rather have no hair than desperately try to keep the thinning hair I have left.
I haven't done too much over the last few days. Just taking it easy at home. I have put on more weight (the doctors are very pleased about this, I was way too skinny) and now my injections aren't so painful thanks to the flab round my tummy. The district nurse still comes round every single morning to give me these injections, its more of a nuisance now than anything. I do have a massive pain threshold and my techniques for coping for pain are pretty awesome I reckon. I have been taught to put myself in a state of light-hypnosis and it actually really helps.
Hmmm what else to write.......... I guess I could tell the story of the fuck-up the hospital made. When I was supposed to be having my second dose of chemo I was told to be at the ward at 9am to talk to the doctors and receive some meds. I waited eight freaking hours to see a doctor and get chemo. eight. hours. I wasn't even allowed out of the ward for a second in case the doctors came while I was out. Auckland apparently hadn't shipped down my chemo in time and they had missed two more flights to get it down (the chemo only has a shelf life of 6 hours). To make matters worse, it was only a registrar who saw me and pretty much checked my breathing and gave me a once over. I didn't know what treatment I was having and what the plan was. I was in the dark about everything. So after waiting eight hours for this doctor I was given my lumbar puncture (chemo injected into the spinal cord fluid thing - ouch) and then was given my regular chemo. All went according to plan up until we were about to leave and mum just did a double check on my protocol. Turns out they had forgotten to give me one important chemo. It had been left in the drugs room and wasn't picked up because "there was a sticker on it". That sticker was a piece of scrap paper. What makes matters worse is that it is imperative I get chemo on the days I am registered for it. It all has fits inside this nice puzzle/timetable and one balls up and they have to change my protocol. After mum inquired about the chemo I didnt have the nurses went to find my protocol. They had lost it. They had lost my treatment plan. My original chemo treatment plan that lists all the drugs I need and the whole plan for everything. Fast forward a couple of hours they call the charge nurse from home in, we get an apology (fyi it was a very heartfelt apology) and we are assured it won't happen again. Hopefully you can follow the story haha it si not very well written...
It is so obvious though that the nurses and doctors are overworked at the hospital. Assigning one nurse to three or four patients that are receiving chemo is way too much of a work load. When you are being given chemo the nurse has to pay all her attention onto you. You are monitored before, during and after the chemo is administered and this means the nurse is with you the whole time. They can't manage three or four different people like this. Then I hear the government is cutting more nursing jobs so it is all going to turn to shit. I semi want to go up to the law makers and ask them what they would do in my position? Health care should be top priority to be honest. If Mr.Keys daughter/son was in hospital suffering from cancer I am sure he would think twice about cutting nurses jobs. End of political rant.
Wednesday, November 4, 2009
Email change
To everyone that emails to noken@xnet.co.nz we have changed our email to thekilpins@gmail.com. Please send us an email so we can add you to our contacts. Our computer broke and we lost every single email address that was saved onto there.
When you want to email us from now on please do so at thekilpins@gmail.com
Ken & Nora
Important. Please Read.
Yesterday I had my transplant appointment. I spent over an hour talking to the Hematologist (blood specialist) about the bone marrow transplant I will be receiving. I will continue having chemotherapy until December. When December comes they hope I will be able to have my transplant. My sisters have been tested as donors and I will find out if they are a match in about 4 weeks. If they aren't I will go on a international donor list where there is roughly 80% of finding a match. If this is the case the transplant itself may not happen till January. The stem cells will be harvested from my donor (my sister or international person) and within 24 hours will be transplanted into me. My body will then literally replace every single cell over the course of about 3 months. I will be in Wellington hospital for 3 months in isolation as my body is "reborn". This includes constant blood, platelets and feeding (i will lose the lining in my stomach and throat) transfusions. No visitors unless I nominate you specifically or you are family. I can't bring much into the room itself as it has to be new or sterilized completely. I am not exaggerating when I say if someone came in carrying old bacteria from a cold they had it is most likely I will die. This transplant is extremely risky but it is my last and only chance at getting better. Some of the risks involved:
Host rejection disease (they want this to occur but it is hard to control the severity. Too much and it kills me. Not enough and I won't get better.)
Infection (They told me almost all patients suffer an infection within the 3 months after the transplant. This can range from mild infection to lethal.)
Organ failure (My organs will be under huge amounts of stress and there is a chance they could fail from the intensity of the transplant and changes. I would not be eligible for a organ transplant either because I will be already too weak.)
There are lots of other factors involved but I can't be bothered/can't remember them right at the moment. The only one thing they do recommend is that I keep active, so I hired an exercyle for 2 months.
If you want stats I have a 50/50 chance of living or dieing. This is the broad stats used over everyone transplant but I do have some positives on my side:
Apart from this it is a gamble. I am faced with the possibility of not existing in 6 months time. I can't explain this feeling at all. You know when you hear the cliche "stop and smell the roses"? It is something I actually do and appreciate. Being able to feel the sun is........special and satisfying.
Please don't say thing like "stay positive" or "everything will be ok". It is out of anyones control and I will take it as it comes. You can't say it will be ok, you have nothing to back this up with. If you would like to help please I am asking if you could donate blood or platelets that would mean more to me than anything. Taking that one hour out of your entire existence to donate blood WILL literally save a life. One hour in your life is what I am asking. Is knowing that you saved a payment enough? Are you so busy you cannot spare one hour for another human beings existence? Do it. Please. Donate blood or platelets (platelets are the things that clot your blood. They stop you bleeding. Don't worry it is the same process as giving blood I believe) I will unlikely be the one to receive it but consider it payment to the other donors that I will receive from. Same goes to all you international readers of my blog too. Go to your donor branch or whatever, take that one hour out of your life to save someone elses.
If you would like to support me more materialistically (is that a word?) I would appreciate the following:
One final note. The stats mentioned are broad stats and every single case is different. For me as an individual they are "confident" that things should work. Personally I am confident too but things can change in an instant. I am not bitter at the moment at all as most of my teenage years have been experienced with cancer and other serious illnesses. My life is already beginning to change like I mentioned in my other blog entry. I don't have time to feel sorry for myself and be sad. I appreciate life. I just want to live. When/If you see me and seem happy it is because I am. I am happy to be alive, to be able to talk with people and do shit. From now on everything is out of my control and there is nothing I can do about it so worrying/sad is a waste of time and effort. One piece of advice I can offer to everyone is this:
If you are unhappy with aspects of your life change them. Don't theorize or talk about changing them. Just do it. You could die tomorrow and knowing you could've experienced more happiness when you had the chance is too much of an offer to pass up. Seriously do something about whatever is making you unhappy. Don't overthink anything, just move on. Life is too short to dwell on things. Who knows, it could be you that is hit by a car tomorrow or is told you only have months to live. What would you change? Change that NOW. Thinking about that new TV or bike you wanted? Go buy it now. Experience it all. Money is money its paper it means nothing.
That paragraph sounded very....... commercial :P
P.S. Quick notes:
50/50 chance of living or dieing
Transplant is aimed at being in late december. Will be in wellington following three months after that.
Extremely risky surgery and the after effects of transplant.
Start living. Today
Donate blood or platelets.
Host rejection disease (they want this to occur but it is hard to control the severity. Too much and it kills me. Not enough and I won't get better.)
Infection (They told me almost all patients suffer an infection within the 3 months after the transplant. This can range from mild infection to lethal.)
Organ failure (My organs will be under huge amounts of stress and there is a chance they could fail from the intensity of the transplant and changes. I would not be eligible for a organ transplant either because I will be already too weak.)
There are lots of other factors involved but I can't be bothered/can't remember them right at the moment. The only one thing they do recommend is that I keep active, so I hired an exercyle for 2 months.
If you want stats I have a 50/50 chance of living or dieing. This is the broad stats used over everyone transplant but I do have some positives on my side:
- I am young so my body is a lot better at handling it than an older person.
- I am "chem0-sensitive" still. This means the cancer is responding to chemo.
Apart from this it is a gamble. I am faced with the possibility of not existing in 6 months time. I can't explain this feeling at all. You know when you hear the cliche "stop and smell the roses"? It is something I actually do and appreciate. Being able to feel the sun is........special and satisfying.
Please don't say thing like "stay positive" or "everything will be ok". It is out of anyones control and I will take it as it comes. You can't say it will be ok, you have nothing to back this up with. If you would like to help please I am asking if you could donate blood or platelets that would mean more to me than anything. Taking that one hour out of your entire existence to donate blood WILL literally save a life. One hour in your life is what I am asking. Is knowing that you saved a payment enough? Are you so busy you cannot spare one hour for another human beings existence? Do it. Please. Donate blood or platelets (platelets are the things that clot your blood. They stop you bleeding. Don't worry it is the same process as giving blood I believe) I will unlikely be the one to receive it but consider it payment to the other donors that I will receive from. Same goes to all you international readers of my blog too. Go to your donor branch or whatever, take that one hour out of your life to save someone elses.
If you would like to support me more materialistically (is that a word?) I would appreciate the following:
- Sweets (lollies etc.) I love these even more now I am on chemo. I prefer fruity ones as the flavour is a lot stronger. International readers this would be an ideal thing to send that I would really appreciate!
- Colin and Maggie. Is there any chance at all I could get one of your guitars for cheap? Possible to ship to New Zealand? I am not very musically inclined but I figure a guitar would be awesome in isolation in hospital. It would give me something to do and I would work my ass off to get your name out here in NZ.
- Vouchers for various electronic stores. I am going to maybe purchase a laptop for myself during isolation as a way to continue writing this blog and keep in touch with friends. Lets be honest here people, if its a shitty laptop don't bother. I want a grunty gaming one. Feel free to tell the whole "a friend of mine has cancer for the second time and is struggling story" as a way to get a free or heavily discounted laptop. I am more than happy to pay for some of it too. Actually, I RECOMMEND you do use the cancer card to try get things for cheaper. I deserve a bit of a deal don't I? Having cancer twice an' all.Seriously don't be ashamed, and if you have to I am happy to talk to them myself.
- Guitar Hero World tour big pack with the instruments. I have to keep active during isolation and this seems ideal.
- Any other do-dads or knick knacks that would cheer me up. The more homemade the better actually, it means a lot more.
One final note. The stats mentioned are broad stats and every single case is different. For me as an individual they are "confident" that things should work. Personally I am confident too but things can change in an instant. I am not bitter at the moment at all as most of my teenage years have been experienced with cancer and other serious illnesses. My life is already beginning to change like I mentioned in my other blog entry. I don't have time to feel sorry for myself and be sad. I appreciate life. I just want to live. When/If you see me and seem happy it is because I am. I am happy to be alive, to be able to talk with people and do shit. From now on everything is out of my control and there is nothing I can do about it so worrying/sad is a waste of time and effort. One piece of advice I can offer to everyone is this:
If you are unhappy with aspects of your life change them. Don't theorize or talk about changing them. Just do it. You could die tomorrow and knowing you could've experienced more happiness when you had the chance is too much of an offer to pass up. Seriously do something about whatever is making you unhappy. Don't overthink anything, just move on. Life is too short to dwell on things. Who knows, it could be you that is hit by a car tomorrow or is told you only have months to live. What would you change? Change that NOW. Thinking about that new TV or bike you wanted? Go buy it now. Experience it all. Money is money its paper it means nothing.
That paragraph sounded very....... commercial :P
P.S. Quick notes:
50/50 chance of living or dieing
Transplant is aimed at being in late december. Will be in wellington following three months after that.
Extremely risky surgery and the after effects of transplant.
Start living. Today
Donate blood or platelets.
Send me packages (this really cheers me up) my address is:
Alex Kilpin
92 Rhodes Drive
Kelvin Grove
Palmerston North 4414
New Zealand
92 Rhodes Drive
Kelvin Grove
Palmerston North 4414
New Zealand
Thank you for reading this. Now begins the calm before the storm. My chemo effects are starting to take their toll on me and it will only get worse. However, I am not going to be miserable and lie around (much :P).
Monday, November 2, 2009
Transplant Wellington
The last few days have been quite good. There was a bit of a drama at the hospital but thats a story I will save for another blog entry. I have been home the last couple of days and am getting daily visits by a district nurse. She flushes my hickman line, gets bloods and gives me an injection everyday (Clexane - A blood thinner to break down some clots in my lungs). Nothing important has happened really, I have had a lot of spare time and was thinking of buying Guitar Hero to try and master it.... or something.
Tomorrow (today? its quite late) is a big day for me. I have to travel down to Wellington and will be assesed for my bone marrow transplant. I think they will just check my out and run some tests then they might even schedule a date. My two sisters were tested to see if they will be matches so I should get those results tomorrow too. I am not too worried if they aren't a match, the doctors say because I am full Caucasian I have an extremely high chance of finding a donor. I would be put on a donor list that is worldwide and would find one easily. They said they have to refuse some people for the world wide donor database because there are too many for people like me (full white).
After the trip down to Wellington tomorrow shit starts getting heavy. I will be having big doses of chemo reguarly in prepation for the transplant which should be round December. Two offical "cycles" of chemo will be given. I don't even know how much is in a cycle but I am assuming it is lots because they want the transplant quickly. After the transplant has been performed I will be in isolation while my cells attach to the new bone marrow (thats the plan anyhow). This is when stuff like the common cold could kill me. Every defense I have will be gone, no white cells, nothing. Its like being reborn sort of. I don't think I can even bring outside things into the hospital with me after the transplant because they won't be sterile. Oh well, thats a while away in the grand scheme of things yet...
New chemo taste bud change. I have developed an obsession for Kiwifruit. I can't get enough of them, it seems it is the only thing I can taste without loading a ton of condiments on top of it. Oh and also Sweet and Sour pork. Everything else I eat tastes like........nothing? I can feel the texture of the food in my mouth and can get a tiny tiny amount of flavour but no where near as much as I used to. It is really quite frustrating not being able to taste and I self consciously load more food into my mouth to try and get flavour.
My hair is still here for some reason. I think its thinning? Or maybe I think its thinning because I expect it to? I am struggling to walk a bit at the moment. I can't feel my calves very much when I walk but I can feel my feet on the ground. It is an unusual feeling not being able to feel your whole leg move, it feels like sometimes my feet aren't attached.
One thing I have learnt with this second round of cancer is that life is pretty short. Things can change in an instant you know? Here, then gone the next second (does that sound poetic and academic? :P) My life has definitely changed already. I have become a lot more decisive and assertive (in a good way). I just feel like I don't want to waste anymore time anymore. Try to do as much as I can when the opportunity arises. I wish I could explain this better without it sounding cliche..... but I can't honestly compare it to anything I have experienced. Its like a new lease on life? Instead of talking about doing things I actually do them now. Good stuff.
Tomorrow I will update the blog with the results from my transplant appointment. Maybe some pictures too but requires so much effort.
P.S. Thank you for all the comments I have received on my blog. I do read every single one of them and would reply but can't be effed to be honest. Note to school people: I might come in for a visit for a couple of hours before I start on this huge dose of treatments.
Tomorrow (today? its quite late) is a big day for me. I have to travel down to Wellington and will be assesed for my bone marrow transplant. I think they will just check my out and run some tests then they might even schedule a date. My two sisters were tested to see if they will be matches so I should get those results tomorrow too. I am not too worried if they aren't a match, the doctors say because I am full Caucasian I have an extremely high chance of finding a donor. I would be put on a donor list that is worldwide and would find one easily. They said they have to refuse some people for the world wide donor database because there are too many for people like me (full white).
After the trip down to Wellington tomorrow shit starts getting heavy. I will be having big doses of chemo reguarly in prepation for the transplant which should be round December. Two offical "cycles" of chemo will be given. I don't even know how much is in a cycle but I am assuming it is lots because they want the transplant quickly. After the transplant has been performed I will be in isolation while my cells attach to the new bone marrow (thats the plan anyhow). This is when stuff like the common cold could kill me. Every defense I have will be gone, no white cells, nothing. Its like being reborn sort of. I don't think I can even bring outside things into the hospital with me after the transplant because they won't be sterile. Oh well, thats a while away in the grand scheme of things yet...
New chemo taste bud change. I have developed an obsession for Kiwifruit. I can't get enough of them, it seems it is the only thing I can taste without loading a ton of condiments on top of it. Oh and also Sweet and Sour pork. Everything else I eat tastes like........nothing? I can feel the texture of the food in my mouth and can get a tiny tiny amount of flavour but no where near as much as I used to. It is really quite frustrating not being able to taste and I self consciously load more food into my mouth to try and get flavour.
My hair is still here for some reason. I think its thinning? Or maybe I think its thinning because I expect it to? I am struggling to walk a bit at the moment. I can't feel my calves very much when I walk but I can feel my feet on the ground. It is an unusual feeling not being able to feel your whole leg move, it feels like sometimes my feet aren't attached.
One thing I have learnt with this second round of cancer is that life is pretty short. Things can change in an instant you know? Here, then gone the next second (does that sound poetic and academic? :P) My life has definitely changed already. I have become a lot more decisive and assertive (in a good way). I just feel like I don't want to waste anymore time anymore. Try to do as much as I can when the opportunity arises. I wish I could explain this better without it sounding cliche..... but I can't honestly compare it to anything I have experienced. Its like a new lease on life? Instead of talking about doing things I actually do them now. Good stuff.
Tomorrow I will update the blog with the results from my transplant appointment. Maybe some pictures too but requires so much effort.
P.S. Thank you for all the comments I have received on my blog. I do read every single one of them and would reply but can't be effed to be honest. Note to school people: I might come in for a visit for a couple of hours before I start on this huge dose of treatments.
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