Sorry for the long time no post! I am still here :)
A few bits and pieces have been happening since I last wrote an entry here. I now have a confirmed bone marrow donor. It is a male from the United States! So now I just need to have low doses of chemotherapy to keep the cancer from returning, then I go down to Wellington on the start of Feb for "conditioning". This is when they exterminate virtually every single cell in my body so the transplant can happen. Then I have 3 weeks for the bone marrow to take to my body and produce cells. Hopefully thats how it will go down.
I jokingly asked the doctors if a bone marrow transplant was harder than a heart or kidney transplant. They said "Without a doubt a bone marrow transplant is the hardest transplant a person can undergo". Moving on....
I was admitted into hospital unexpectedly the other week because I developed an infection. I was having really high temperatures and couldn't stop shaking. But the infection thankfully went away after spending 6 days in bed with IV antibiotics. I was home in time for Christmas though, but I couldn't eat what everyone else was because I am on a special "neutropenic" diet. This means I have to have everything peeled and fresh. I can't have anything cold (apart from grains etc.) or reheated. No cold meats or fruit with the skin on. These are preventions so I don't get an infection. Sounds extreme but an unwashed apricot or something could be the cause of a huge infection for me because of my low immunity.
I have a bone marrow biopsy coming up on the 6th of Jan and thats when they stick a very long thick needle into my hip bone and suck some bone marrow out to check if theres cancer cells in it. They are assuming I am in remission because my bloods are relatively stable. But this procedure hurts pretty bad, only local anesthetic is used but they cant numb the bone itself so it is pretty painful.
I am learning Guitar too!! I am ok at it, I can strum and shit now :P
I will update in the next couple of days! Hope everyone had a good Xmas!
Tuesday, December 29, 2009
Friday, November 27, 2009
Long time no post
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.
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.
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.
Wednesday, October 28, 2009
New!
Sorry I haven't updated the blog in a while. I have been very tired/busy. Hmm not so much has happened since I got the line put in. I no longer have to have blood tests because they can draw blood from my line which is a plus. The site and the line itself however, are still very sore. I have to be extremely careful with it, I am not even allowed a bath with it because it literally is a tube into my heart vein.
I am currently on leave from the hospital until Friday. Thats when I get my next dose of chemo. Chemo is pretty brutal stuff, at the moment I am just starting to experience the serious side effects of it. Your appetite changes, you want to vomit all the time, you constantly feel like you have the flu. An example would be today when I was at the supermarket. I have to go on a special diet for the next couple of months to lower the risk of me getting an infection via food. This means no eggs, hard cheeses and fresh greens. Everything has to be piping hot and cooked. On top of this the huge appetite and taste bud changes that come with the chemo treatment make it really hard for me to actually eat relatively healthily. Anyway, I was at the supermarket in the lolly isle choosing some lollies. I was picking out some sour ones and saw those little marshmallow mushrooms lollies. I nearly spewed in my mouth. If I didn't hold it down I would've vomited all down the isle. This is how extreme and rapid the food thing is with chemo, literally one moment you're wanting some specific food then 5 minutes later even the thought of food makes you get that stomach bile taste.
Oh on a completely different note, one of my pet female turtles laid an egg. We were cleaning out the tank and we put all three turtles (one male and two female) in a washing basket while we refilled the tank. When we went to put them back in we saw that one had laid an egg! I rang up the pet shop and got instructions as to what to do. I made a little bed for the egg out of an ice cream container, cotton wool and tissues. I went back to get the egg and found one of the other turtles had eaten it!!!!!!!! I was a bit disappointed but oh well, maybe I will get another some other time.
If you would like to visit me, you should try do so before Friday. I am starting to get quite ill and I will be getting more chemo soon. Next week you will also need to be more careful if you're feeling at all unwell. My white cell count is going to fall quite rapidly and if you carry bacteria from a normal cold into my house I could be hospitalized. So just be aware, you have to be healthy to see me.
My hair has started to thin a bit (I think?) so that should be due to fall out soon.
I have best be off to bed now, its 1:32 am and I have a nurse coming tomorrow to flush my hickman line and take bloods in the morning.
I am currently on leave from the hospital until Friday. Thats when I get my next dose of chemo. Chemo is pretty brutal stuff, at the moment I am just starting to experience the serious side effects of it. Your appetite changes, you want to vomit all the time, you constantly feel like you have the flu. An example would be today when I was at the supermarket. I have to go on a special diet for the next couple of months to lower the risk of me getting an infection via food. This means no eggs, hard cheeses and fresh greens. Everything has to be piping hot and cooked. On top of this the huge appetite and taste bud changes that come with the chemo treatment make it really hard for me to actually eat relatively healthily. Anyway, I was at the supermarket in the lolly isle choosing some lollies. I was picking out some sour ones and saw those little marshmallow mushrooms lollies. I nearly spewed in my mouth. If I didn't hold it down I would've vomited all down the isle. This is how extreme and rapid the food thing is with chemo, literally one moment you're wanting some specific food then 5 minutes later even the thought of food makes you get that stomach bile taste.
Oh on a completely different note, one of my pet female turtles laid an egg. We were cleaning out the tank and we put all three turtles (one male and two female) in a washing basket while we refilled the tank. When we went to put them back in we saw that one had laid an egg! I rang up the pet shop and got instructions as to what to do. I made a little bed for the egg out of an ice cream container, cotton wool and tissues. I went back to get the egg and found one of the other turtles had eaten it!!!!!!!! I was a bit disappointed but oh well, maybe I will get another some other time.
If you would like to visit me, you should try do so before Friday. I am starting to get quite ill and I will be getting more chemo soon. Next week you will also need to be more careful if you're feeling at all unwell. My white cell count is going to fall quite rapidly and if you carry bacteria from a normal cold into my house I could be hospitalized. So just be aware, you have to be healthy to see me.
My hair has started to thin a bit (I think?) so that should be due to fall out soon.
I have best be off to bed now, its 1:32 am and I have a nurse coming tomorrow to flush my hickman line and take bloods in the morning.
Friday, October 23, 2009
Can't type for very long. I have been given my sleeping pill already. Yesterday I had my operation for my hickman line. I was really scared about this one, as this was probably was first "official" serious proceedure. It actually involved going to theatre and all that stuff. Ok so heres what happened. I was told I couldn't be put to sleep for the op because of some clots that had developed in my lungs. This meant that I had to only have local anasthetic and as little sedation as possible. So, I was wheeled down to theatre. Filled out some forms, asked the questions you would normally ask etc. Then I was wheeled into the operating room. The nurses were running around preparing and the surgeon was gowning up. I noticed he put on this clear perspex window thing over his face. I assumed this was to stop blood squirting in his face during the surgery so I totally expected to be bleeding heavily during the op. This freaked me out even more. I didn't want to open my eyes during the op and see my artery had been slashed open by accident and blood was pumping everywhere. Next, I was given blankets and the site was isolated from the rest of my body. They put iodine on (a orange disinfectant dye) where they were going to cut and covered me up in pre-warmed towels. Then they put the local anasthetic in. Instead of selective injecting in in a few spots the surgeon used a big needle and when he pushed it into my skin, just skewed it around on a angle and moved it all over the place. It hurt like freaking crazy.
Then he said "can you feel this?"
I said "YES" (I couldn't actaully feel it. I just said yes to make sure the spot was properly numbed)
He said "Give him a small amount of sedation"
The night before I hadn't slept, in the hope that, if I did receive sedation, it would make me fall asleep. It didn't.
So I got given some more local and then they put a veil over my face. They then begun the op. As far as I understand they cut small line into my upper pectorial muscle and pushed a tube into one of my big veins coming from my heart. They keep movin my shoulder and checking the position of the tube which scared me a bit. Xrays were taken mid-op blah blah. I went to the recovery room and had to lie in my own blood from the op until I could go back to the ward half an hour later. Overall, the op was a success but easily the most frightening thing in my entire life thats ever happened to me. Just during the operation knowing they are cutting into you and seeing your insides while I am still conscious and alert really freaks me out. Felt like I was in E.R. or something tbh, thats how tense it was. I will continue this post tomorrow with more information on the hickman line itself and stuff (can't remember if I explained what it is)
Then he said "can you feel this?"
I said "YES" (I couldn't actaully feel it. I just said yes to make sure the spot was properly numbed)
He said "Give him a small amount of sedation"
The night before I hadn't slept, in the hope that, if I did receive sedation, it would make me fall asleep. It didn't.
So I got given some more local and then they put a veil over my face. They then begun the op. As far as I understand they cut small line into my upper pectorial muscle and pushed a tube into one of my big veins coming from my heart. They keep movin my shoulder and checking the position of the tube which scared me a bit. Xrays were taken mid-op blah blah. I went to the recovery room and had to lie in my own blood from the op until I could go back to the ward half an hour later. Overall, the op was a success but easily the most frightening thing in my entire life thats ever happened to me. Just during the operation knowing they are cutting into you and seeing your insides while I am still conscious and alert really freaks me out. Felt like I was in E.R. or something tbh, thats how tense it was. I will continue this post tomorrow with more information on the hickman line itself and stuff (can't remember if I explained what it is)
Thursday, October 22, 2009
Wednesday, October 21, 2009
Sore
I had the lumbar puncture yesterday. I will tell you a little bit more about this. When I get chemo it travels all around the body, killing cells. The only place it can't get to is the spinal fluid. So what they do is... extract some of my spinal fluid and put the same amount of chemo into my spine so the chemo cells can travel around there and do their stuff.
Anyway, I had this yesterday and was really nervous. This is what happened:
The nurses came in with the Doc that was going to give the injection. I was told to roll on my side and adopt the foetal position so he could feel my spine. He then drew all over my back with a sharpie to mark out where he was going to go and got a house surgeon to double check it all. I was told to lay dead still from now on so the needle would go in the right place. The local anasthetic was injected in, then he kept prodding me and asking if I could feel it. I said yes even though I couldn't just so I could get some extra numbing stuff. Then he shoved the needle into my spine, took out some fluid and put the same amount of chemo back in. It took altogether about 15 minutes. I had to stay perfectly flat on my back from 6 hours after that though in case some spinal fluid leaked.
Tomorrow I have my first proper operation. It is called a Hickman line and its a permanant tube sticking out of my chest. This is how I will receive most of my medication I need and bloods can be taken from it etc. The surgeon doesn't want to put me to sleep for this though so I will actually be watching the scalpel cutting into my chest and shit. When I get this line in, it will make me look like a more legit cancer patient. You really need to look after it though. The dressing on it will have to be changed constantly and it cannot come into contact with water (no swimming, beach, bath, pool etc.). Also, because its literally coming out of a hole in my chest it is very very painful so I won't let anyone touch me for a while. The hickman is meant to stay in the majority of the time I am on treatment (2 years) so I am not looking forward to it at all. I'm considering not ever posting pictures of this one because its simply too much even for me to handle, you semi become a true cancer cripple you know?
Anyway, I had this yesterday and was really nervous. This is what happened:
The nurses came in with the Doc that was going to give the injection. I was told to roll on my side and adopt the foetal position so he could feel my spine. He then drew all over my back with a sharpie to mark out where he was going to go and got a house surgeon to double check it all. I was told to lay dead still from now on so the needle would go in the right place. The local anasthetic was injected in, then he kept prodding me and asking if I could feel it. I said yes even though I couldn't just so I could get some extra numbing stuff. Then he shoved the needle into my spine, took out some fluid and put the same amount of chemo back in. It took altogether about 15 minutes. I had to stay perfectly flat on my back from 6 hours after that though in case some spinal fluid leaked.
Tomorrow I have my first proper operation. It is called a Hickman line and its a permanant tube sticking out of my chest. This is how I will receive most of my medication I need and bloods can be taken from it etc. The surgeon doesn't want to put me to sleep for this though so I will actually be watching the scalpel cutting into my chest and shit. When I get this line in, it will make me look like a more legit cancer patient. You really need to look after it though. The dressing on it will have to be changed constantly and it cannot come into contact with water (no swimming, beach, bath, pool etc.). Also, because its literally coming out of a hole in my chest it is very very painful so I won't let anyone touch me for a while. The hickman is meant to stay in the majority of the time I am on treatment (2 years) so I am not looking forward to it at all. I'm considering not ever posting pictures of this one because its simply too much even for me to handle, you semi become a true cancer cripple you know?
Monday, October 19, 2009
Skin
So I really can't be bothered updating the blog every single day because I really don't find I have much to talk about sometimes. I will still update it most days however!
Today I had my team of haemotologists (blood cancer specialists) come in and talk to me. I have responded well to the treatment so far and they are pleased with my progress. My kidneys have held up well to the flushing out of all the cancer cells and my bloods are starting to stabilise. Its some progress.
Anyhoo.... I found another side effect of the chemo. My skin on my left hand has been drying off anf becoming all scaly its pretty horrible. I have to use hand cream every hour or so otherwise my skin just flakes off in huge chunks. bleh!!! I have also lost some of my taste buds. Beef and lamb taste like chalk to me and I am constantly eating strong flavoured foods to try and get a taste in my mouth. Thank you to Emma Quigon (sp?) from Cafe Express for dropping me round a chicken salad. It was delicious!!!!
I got a visit from Anita today too! She is really good at....boosting you? That feeling when your down and feel crap and then someone/something gives you like a boost of energy? It was the first time in a while I actually forgot I had cancer. Thank you Anita :)
I really want to write a paragraph on how awesome Miriam and Jim are but I am so nakkid(as in "tired"?) that I can't manage it tonight :(
For the first time I was allowed out home for a couple of hours tonight. It smells really weird being at home where things are not as clean as the hospital but I enjoyed it nonetheless. I was getting quite weird looks as I was walking to the car in my Spock tshirt, boxers, dressing gown and crutches. I think I pulled it off though.
Tomorrow, I have a pretty serious proceedure that I am worried about. Its called a lumbar puncture and what they do is inject chemo into my spine. I assume this is to get rid of any cancer cells in there. My only worry is that I will be under minimal sedation during this and I'm just a bit scared of the pain.
P.S. I know i have promised pictures, dont worry i will try tomorrow. I have taken tons so you can see the aftermath of some of the things that get done to me.
Today I had my team of haemotologists (blood cancer specialists) come in and talk to me. I have responded well to the treatment so far and they are pleased with my progress. My kidneys have held up well to the flushing out of all the cancer cells and my bloods are starting to stabilise. Its some progress.
Anyhoo.... I found another side effect of the chemo. My skin on my left hand has been drying off anf becoming all scaly its pretty horrible. I have to use hand cream every hour or so otherwise my skin just flakes off in huge chunks. bleh!!! I have also lost some of my taste buds. Beef and lamb taste like chalk to me and I am constantly eating strong flavoured foods to try and get a taste in my mouth. Thank you to Emma Quigon (sp?) from Cafe Express for dropping me round a chicken salad. It was delicious!!!!
I got a visit from Anita today too! She is really good at....boosting you? That feeling when your down and feel crap and then someone/something gives you like a boost of energy? It was the first time in a while I actually forgot I had cancer. Thank you Anita :)
I really want to write a paragraph on how awesome Miriam and Jim are but I am so nakkid(as in "tired"?) that I can't manage it tonight :(
For the first time I was allowed out home for a couple of hours tonight. It smells really weird being at home where things are not as clean as the hospital but I enjoyed it nonetheless. I was getting quite weird looks as I was walking to the car in my Spock tshirt, boxers, dressing gown and crutches. I think I pulled it off though.
Tomorrow, I have a pretty serious proceedure that I am worried about. Its called a lumbar puncture and what they do is inject chemo into my spine. I assume this is to get rid of any cancer cells in there. My only worry is that I will be under minimal sedation during this and I'm just a bit scared of the pain.
P.S. I know i have promised pictures, dont worry i will try tomorrow. I have taken tons so you can see the aftermath of some of the things that get done to me.
Saturday, October 17, 2009
Day 5
Whats up :) I'm starting to feel the early effects of the chemo now. It has altered my taste buds a wee bit and all meat tastes like wallpaper, its' horrid! I had a bit of a weird feeling today too.... I was lying in bed and started getting random muscle pains. they would last maybe 6 seconds then switch to another limb (forearm, calf, chest etc.) I started getting short of breath so the doctor was called in. They were getting quite painful so I had a large dose of morphine. It turns out the chemo can affect your body in tons of crazy ways I didn't even know about. The pain and shortness of breath in my chest was due to the cartilige contracting around my lungs with the muscle spasms. The contracting was a result of the chemo.
Also, my urine is red. One of the chemos I received yesterday dyed my urine red. To be honest I am liking the change in urine colour, makes me feel quite cool.
Also, my urine is red. One of the chemos I received yesterday dyed my urine red. To be honest I am liking the change in urine colour, makes me feel quite cool.
Friday, October 16, 2009
Day 3+4
Im going to squish two days of my "cancerpade" into one post. So yesterday I went to the dentist at the hospital, I have to have some teeth removed to reduce the risk of getting an infection during treatment. So that is scheduled in for next week with the oral surgeon. The rest of the day was spent talking to dietitians, physios and the like.
After school today I received a lot of visitors. It was awesome to have them see me but there were so many I couldn't handle the excitement. I remembered I had to be off to a test and jumped out of bed and ushered everyone out. As I was hopping in the elevator someone knocked my drip and blood started flowing EVERYWHERE. It was gushing onto the elevator floor so I ran back to thee ward in my dressing gown and boxers while Ella ran ahead to ask for help. Was really funny to be quite honest.
Today was my first big proper dose of Chemotherapy. Jim, William and Rachael were here to witness it. It feels quite unusal receiving chemo, almost like someone is pouring freezing water diretcly into your blood stream. I am coping with it relatively well at the moment but it wont take long for the side-effects to start kicking in. This brings me to the next big change you might see. Hair, or lack of it. I might get some wigs this time, any ideas?
Thanks again for all the visitors and little gifts I have got, I love them all :)
I have probably missed out a lot but i will try to stay on top of this blog so you can have an idea of whats going on. Pics are incoming!
After school today I received a lot of visitors. It was awesome to have them see me but there were so many I couldn't handle the excitement. I remembered I had to be off to a test and jumped out of bed and ushered everyone out. As I was hopping in the elevator someone knocked my drip and blood started flowing EVERYWHERE. It was gushing onto the elevator floor so I ran back to thee ward in my dressing gown and boxers while Ella ran ahead to ask for help. Was really funny to be quite honest.
Today was my first big proper dose of Chemotherapy. Jim, William and Rachael were here to witness it. It feels quite unusal receiving chemo, almost like someone is pouring freezing water diretcly into your blood stream. I am coping with it relatively well at the moment but it wont take long for the side-effects to start kicking in. This brings me to the next big change you might see. Hair, or lack of it. I might get some wigs this time, any ideas?
Thanks again for all the visitors and little gifts I have got, I love them all :)
I have probably missed out a lot but i will try to stay on top of this blog so you can have an idea of whats going on. Pics are incoming!
Wednesday, October 14, 2009
Day 2. I was meant to write this last night but I was way too tired. As soon as I get the camera cable I wil add some photos to the blog. Soooooo.. yesterday I had an ultrasound on my leg because it has been really really sore. There are no tumors thankfully in my leg it is just bone ache from the leukemia, I just have to have morphine, codine and paracetomol (sp?). I'm sorry about the format the blog in, it is not very well written but bear with me!
I had a CT scan (the huge donut xray machine) and had to drink some dye to make my veins and organs show up on the xrays. It tastes digusting! and just before they are about to start the scan they give you a drug that warms your whole body up. It seriously makes you feel like you need to pee its' such a weird feeling :P
Bad news now, I have a lot of little blood clots inside my lungs and this is quite serious. These clots have made it hard for me to breathe so I am on blood thinners to break down the clots. The thinner is called Clexane and I have to have daily injections into my stomach. It really stings!
My leg is also very very sore and painful. I can't walk at all because the bones in my feet and calves are extremely painful so I am stuck usually in bed, wheelchair or crutches. I have been put on steriods too and these have made me extremely moody and angry. I hate them.
Isn't it weird that when things are going ok a lot of people ignore you or never talk to you? But as soon as you are in a horrible position or something awful happens they pretent to like you and be best friends with you? Why do they do it?
Thank you for all the messages of support but can you please not ask "Are you alright?" obviously I'm not fucking alright, I have cancer. A lot of people have been asking if I need anything, I don't mind what you bring I assure you I appreciate every single thing it all helps.
Especially letters from people :)
One final note. Don't be afraid to offend me or treat me different. I am still Alex and if you do change how you would normally act I promise you I will never talk to you again.
I had a CT scan (the huge donut xray machine) and had to drink some dye to make my veins and organs show up on the xrays. It tastes digusting! and just before they are about to start the scan they give you a drug that warms your whole body up. It seriously makes you feel like you need to pee its' such a weird feeling :P
Bad news now, I have a lot of little blood clots inside my lungs and this is quite serious. These clots have made it hard for me to breathe so I am on blood thinners to break down the clots. The thinner is called Clexane and I have to have daily injections into my stomach. It really stings!
My leg is also very very sore and painful. I can't walk at all because the bones in my feet and calves are extremely painful so I am stuck usually in bed, wheelchair or crutches. I have been put on steriods too and these have made me extremely moody and angry. I hate them.
Isn't it weird that when things are going ok a lot of people ignore you or never talk to you? But as soon as you are in a horrible position or something awful happens they pretent to like you and be best friends with you? Why do they do it?
Thank you for all the messages of support but can you please not ask "Are you alright?" obviously I'm not fucking alright, I have cancer. A lot of people have been asking if I need anything, I don't mind what you bring I assure you I appreciate every single thing it all helps.
Especially letters from people :)
One final note. Don't be afraid to offend me or treat me different. I am still Alex and if you do change how you would normally act I promise you I will never talk to you again.
Tuesday, October 13, 2009
Day 1
Day 1. I had 5 vials of blood taken in the morning to chek everything and get a more accuraste disagnosis as to what type of Leukemia it is. Later that day I had a bone marrow biopsy, this meant getting a larger needle into my hip bone and extracting a bit of bone marrow. I will most likely need a bone marrow transplant from one of my sisters , but we need to make sure we get a match. After this I had a couple of chest xrays just to see if there were any addiontal tumors within my body (haveen't got results bac yet) but I'm pretty confidnt I don't. Umm what else is there to say... oh they found it when I was having a routine blood count to check if I still had glandular fever and my white cell count showed up as 210 and the normal amount is 10 so they knew something happened. A huge thanks to everyone for the supportive messages I mean it! Sorry if I didnt reply back to your texts I have a line in my hand and I couldn't text. Also, thanks heaps to Jenny Mcwhannell (I hope this is spelt rihgt sorry :P), Chris CareySmith and Anna from CanTeen. I will update this as I get more details anfd results! Lots of Love, Alex
If you have any questions at all please ask me I will do my best to answer them. Seriously ask anything you want!
If you have any questions at all please ask me I will do my best to answer them. Seriously ask anything you want!
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