Journal
So here is where the updates come in, may not be able to it everyday, but will when I can. Feel free to come along for the ride....
You are Visitor
24 July 2002
Location: Newcastle upon Tyne - At Home
Feeling: Right as rain
I have just been to my favourite place in town....the hospital for my check-up. Seems my blood count is coming up nicely which is good news. I am due back in next Wednesday afternoon to have a little IV chemo and to begin taking an assortment of tablet steroids and chemo. I will be going back regularly at first while they monitor the effect of these new drugs on me - but the visits should become less frequent as time goes on. Still no more news on my transplant possibilities etc, a few more weeks for that news yet.
I should be back at work in just over a week, which will be an interesting change (at least for a while). It has been quite a while now - but at least I have a good project to get stuck into on my return. Guess I better dust off some clothes to wear....
Robert Cray was in town on Monday night, and Dad managed to get us some good seats to go and see that. It was pretty cool, a little repetitive as blues can be, but worth a look. The first good live music I have seen in a while, he is pretty professional - you certainly get the feeling he has played a few gigs! Jimmie Vaughan and Buddy Guy are playing in a few weeks too, so I am tempted to go and check that out. It is at the old school opera house that is a pretty cool venue - holds about 1000.
I also bought a few movies to watch today...hopefully they will turn out to be good ones. Not holding my breath though - I will let you know how they go.
21 July 2002
Location: Newcastle upon Tyne - At Home
Feeling: Surprisingly good
There has not been too much going on in the last few days. I have been up to the Hospital a couple of times and my blood counts are on the way back to normal levels, which is good news. We still don't have all the information in from the various tests etc, so we don't know what the next step is from here. It may be that we do nothing more and see how it goes, or we may decide to go ahead with some sort of transplant. It is quite a big decision to make though, and you really need to have as much information as possible in order to make it. I am meeting the professor again in about 3 weeks so we can decide on a plan. It is all about weighing up the risks and benefits of further treatment, which unfortunately is not very easy given that this is such a rare disease in people of my age. For now it is pretty much a case of getting back to normal and enjoying myself for a while. I am starting back at work on a new project in a couple of weeks, so it will be good to get some sort of routine back in my life that does not involve the hospital!
Yesterday afternoon I went out for a few drinks with Jigs and Angela on the quayside. It was a nice afternoon and good to catch up with Jigs, who is heading back home to NZ for good again soon. My big break from drinking over the last 5 months certainly showed though as Jigs even managed to drink a pint faster than I did, which was quite alarming! We then headed to another bar and caught up with some other friends. I had a few sangrias too many and ended up being by far the drunkest I have been in a very long time. It was quite fun from what I recall, but then being drunk usually is. I was not in the best form however and got an early taxi home, then sat on the couch annoying everyone before falling asleep. Felt surprisingly good this morning, but a bit hung over I guess.
16 July 2002
Location: Newcastle upon Tyne - At Home
Feeling: Pretty damn good
Not much to report lately, I went into hospital on Monday and my counts were still quite high. They are on the way down though, so it will be interesting to see how low they get. Should not be too bad with this treatment, it did not hammer them too badly the last time.
I actually went into work today for a bit to suss out a new project that is just getting underway. It will keep me busy when I get back at the end of the month and even give me a chance to get out of the toon a bit. It is located in downtown Manchester, so that should be an interesting change. All going well I will be back at work by the end of the month and that will be somewhat of a welcome change given how long I have been gone.
I am also going to hospital tomorrow afternoon to have my blood checked and also see the Professor who will hopefully be able to shed some light on the plan from here. It is still difficult as we don't have all of the info, but we can at least discuss the options and form some kind of plan I am hoping.
FYI - There is an article on the BBC website that relates to one of the patients who has been treated by the same team as I have here in Newcastle. Pretty interesting stuff, and good to see they are achieving such great things. The patient in the article has the same type of Leukaemia as I do and professor is also my Consultant. Click here to have a look.
13 July 2002
Location: Newcastle upon Tyne - At Home
Feeling: Happy and well
Finally the first phase of this whole experience has come to some sort of end. I was allowed out of hospital at about 9pm last night after what was a very long and boring day. My chemo had finished the night before, but I was on a hydration drip most of the day and also had several iv injections to 'rescue' me from the chemo. It was not such a bad treatment really, makes you a bit tired, but not too sick feeling. It looked pretty crazy at one point though as I needed to have a blood transfusion during the treatment and I no longer have the line in my chest. This meant that I had a temporary attachment to veins in each arm along with two big drip stands, 3 volumetric pumps and 4 bags of various sizes and substances. It really did look ridiculous and somewhat reduced my mobility for a few hours. I had all of this removed when the treatment was done, so now I have no peripheral inputs or outputs sticking in or out of my body - this is a first for almost five months and I can assure you it feels good. It does of course mean needles when I get my blood checked, but I can definitely live with that.
So what next? It is all a bit up in the air a bit at the moment as I have not spoken to the Professor yet. At a minimum it will be a few weeks until my blood counts return to some sort of normality and I will be free to behave as a regular person, and a few months before any type of transplant will be attempted. We still don't have enough info to make any sort of decision, but it should all come together over the next few weeks. I will probably be back at work by the end of the month, which will also be a good thing as I want to get some sort of routine going now that there is no more chemo to look forward too.
All that is on the immediate agenda is to rest up, relax and wait for my blood to get back to normal!
10 July 2002
Location: Newcastle upon Tyne - At Home
Feeling: Ready for more
Just a quick note before I head up to hospital for my final chemo course of this first phase. Feeling very good and should only be in 3 days for this lot from memory. I am very excited about getting it over and done with - that is for sure. I am obviously far from complete in my treatment, but finishing this first phase will be an important milestone.
As usual there will be no updates over the next few days while in hospital - so you will have to use your imagination. If you can do sleeping, reading and more sleeping - then that is probably most of what you will miss :-)
8 July 2002
Location: Newcastle upon Tyne - At Home
Feeling: Magic
It has been quite an eventful day really. I have spent the whole day at the day unit having the last of my antibiotics and the last of my GCSF injections. This is good because I have been experiencing a fair bit of bone pain from the GCSF. It stimulates your marrow to produce more white cells, but it also seems to stimulate uncomfortable pulsing pain in your hips and legs. I almost went into hospital late on Monday night as the pain killers were not up to it and I could not sleep, however I eventually got my ticket for the sleepy bus around 3am and collected some stronger painkillers the next day.
I went back into hospital today to see how my blood counts were looking in order to determine when we could try and harvest my stem cells (which usually takes 2-3 days). My count was quite high (for me) and my blood was also very rich in stem cells - just the combination we were after. I got hooked up on the machine at around midday and then we were off. You get a very generous needle placed in your arm and the machine takes a volume of blood out and separates it. It then keeps the white cells and sends everything else back into you. It completes this cycle over and over until it has processed your body's entire volume of blood. It turns out that by four o'clock we had more than enough for a transplant procedure, so I don't have to go back for any more harvesting! Obviously good news as I was expecting it to take all week.
The other good news is that my counts are all very high - so I was able to convince the friendly doctors to let me come in for my final fix of chemo on Wednesday. It was a bit of a mission, but it is all sorted and all going well I should be finished by the weekend. Earlier than I was expecting - but there will still be a couple of weeks recovery time following that before my counts come back to normal and I can get back to a more normal life. I should then be feeling fine until I go back for a transplant a few months later.
Once the final course is over it will all depend on the transplant source as to when it will all happen - but at least after today's efforts we have my cells as a possible option. The bone marrow register is also being searched and we will hear back from my brothers and parents results sometime in the next couple of weeks. Exciting times. The other good news is that the line that they removed from my chest on Friday will not need to be replaced until I come back in for the transplant - in fact it is healing up very well and I will get the stitches out when I go back in on Wednesday.
6 July 2002
Location: Newcastle upon Tyne - At Home
Feeling: A little sore, nothing too serious though.
Well I managed to escape hospital this morning, which was more difficult than expected - but achievable all the same. I had gone into hospital on Thursday night as they wanted to keep an eye on me, and then was shipped off to another ward due to the fact that there were none in the haematology department. I had been to this ward once before and they are all very nice up there, but don't have any of the correct drugs etc, and the nurse from my usual ward had to come up to give me some treatment. All a bit of a fuss I thought, especially as I could have probably got the ward from home faster than they could have got to me on the other side of the hospital.
After a lot of fuss yesterday I ended up having my treatment in the day unit and then waiting until the afternoon for a bed on my usual ward. I was then told they planned to take my line out of my chest due to the infection. All a bit of a surprise for me, as I felt fine and the infection didn't appear to be worse than last time - but then I am no expert. So after much discussion they went ahead and took it out. It was pretty straight forward really - some anaesthetic, then some cutting around the small cuff at on end and then much like dragging a piece of spaghetti from a Bolognese - it was out. It is quite tender today - but I should have the stitches out sometime next week. Kind of strange to have something taken out of your body that has been there for almost five months, but better than getting a really bad infection I guess. I may not need to have another one put in for my next treatment - which would mean I will not have a length of PVC pipe sticking out of my chest while waiting for my transplant, but will have more needles every time I need blood. All much of a much ness I guess - they will let me know at some stage I guess. I will definitely need another one, which they will probably place on the other side, at least I will then have matching scars when they take it out. Hopefully that will be the last one I need!
I have to go back for antibiotics and GCSF injections again tomorrow, and then if my counts are high enough I will be on the stem cell harvesting machine early next week for a few of days....will see how it goes.
4 July 2002
Location: Newcastle upon Tyne - At Home
Feeling: Not too shabby.
Well it has been an eventful few days. I was meant to have Tuesday off from hospital, but since they managed to grow some bugs from my blood cultures I got the call up from the doctor to come in for some antibiotics. So I went in and had a needle put in my vein for the first time in ages. They need to test the peripheral blood as well as the blood in your line you see...how exciting for me. It is amazing how much my veins have faded away actually, still - there were no troubles finding some blood with a needle. The upshot of all of this is that I need antibiotics each day in my line as it has an infection. This was not such a big deal to me as I have to go up everyday anyway for the GCSF injections which started today. I thought I had escaped being admitted to hospital, which I was rather chuffed about - until a few minutes ago when another doctor called up and told me I had to come in o stay...probably for the whole weekend. Joy. They are just being extra cautious due to the fact that my blood counts are about to bottom out and they don't want the infection to get a grip. The treatment is identical, but they just want me there in case something goes wrong - frustrating but necessary I guess - they are the experts after all.
In other news my brothers' tissue typing finally came through and it has all become a little confusing. We do match, but he lacks a couple of types that I possess - so at this stage it is neither good, nor bad news and they need to do more tests to confirm if he will be able to be the donor. Initial thoughts suggest that I would be able to be a donor for him, but not the other way around - because his cells will reject my extra types. All a little unusual - the doctors seem quite surprised by it all. Perhaps they have never had to deal with the Whangarei gene pool before. Now Mum and Dad have to go up to hospital tomorrow and have their tissue types checked as well as having some of my brothers cells sent from Australia for further analysis. I think it quite an achievement that I have managed to get every person in my family jabbed with a needle, at least I am not the only one. It will be a few more weeks before I know if my brother is any good as a donor by the look of it.
So since I will be in hospital it is unlikely I will update this page fore a few days - I am sure everything will be OK, but I guess it is best to play things safe.
1 July 2002
Location: Newcastle upon Tyne - At Home
Feeling: Better and Worse
Starting to feel a bit tired again, most of today consisted of two things: sleep and visiting the hospital. My stomach is getting beck to normal and I have been eating well over the last couple of days, so that part is certainly getting better. My blood counts today were quite high, apart from my white cells which are all diving fast - still this is typical for this time following treatment. I have to go back on Wednesday to see how things look and possibly have some blood before beginning the GCSF injections on Thursday.
Most of my time over the next week will be up at the hospital, including the weekend. At least I do not need to stay there overnight though, or eat the food. I had poor timing today, arriving just before the food trolley of course I couldn't bring myself to eat any lunch at all as I am trying to be kind to my stomach.
It is all a little strange without football to watch, tennis is doing its best to take its place - but it is just not the same. In fact, it is quite different - the ball for a start is a lot smaller an yellow. Then there is the fact there are not nearly as many players...don't get me started on that one.
29 June 2002
Location: Newcastle upon Tyne - At Home
Feeling: Slightly dodgy, but getting better
I ended up getting out of hospital about midday Friday, which was a day earlier than anticipated. The reason for this was that the Professor had looked at my bone marrow sample from the other week and decided it looked so good that we didn't need to hammer it too much with this treatment. He therefore reduced it from 3 days of chemo to two, which I was more than happy about because this is my least favoured treatment. So I was in for two days of chemo and 12 hours of hydration/flush afterwards. The treatment was not that nice - left me feeling pretty nauseas most of the time - and still a bit that way now. I was sick for the first time too, but that was due to my poor planning effort really. I decided that since I barely ate last time I would eat a lot before the treatment - big mistake. It made the nausea worse and I was kept awake with a very dodgy stomach only to vomit it all into a urine bottle at about 3am in the morning. Still I felt a lot better after that. I ate dinner last night and Ben has just cooked pancakes for breakfast - so I will be partaking in a wee feast in a few short moments.
It is very good to be home again. Only one more treatment to go now. I have to go back on Monday to get my blood checked again and then pretty much every day from Thursday as they will start giving me GCSF injections so they can try to harvest my stem cells. That process begins on Monday and there is about a 50% chance that they will be OK for the transplant. Given how I responded to the injections last time I am thinking that I should be OK, but we will have to wait and see. Still no news from my brothers test yet - seems that things in Oz have been held up somewhat, but he is back in contact with them at his end trying to get their A into G.
My stomach is still not back to normal, but not too far off - I think I will still spend most of the weekend asleep. Seems to be the best road to recovery as energy levels are quite low for a while after these treatments. Still - the end is even nearer now.
25 June 2002
Location: Newcastle upon Tyne - At Home
Feeling: Right on
It is half time in the football...South Korea and Germany looking quite close so far, although it looks like Germany will score eventually. I would rather not see them win, but it is pretty likely I suppose.
I am off to hospital for 3-4 days following the game, should be out by the weekend. I get a couple of big iv injections and then get hooked up to a drip of chemo for a few days. I have had this treatment before so know what to expect, last time it made me quite tired and a bit nauseas. Pizza was about all I wanted to eat! I have been to the supermarket and stocked up on some good stuff to eat and will be taking plenty of it up with me. I am pretty much done with hospital food. In fact I feel sick even thinking about it. Still, not much more of it to go...
My mate Ben from NZ arrived yesterday, it has been good to catch up with him. Although - there is still plenty of time for that. He was in good shape after his big trip and seems to be settling in well. Dad gave him a bit of a tour today so he has been acquainted with the toon.
Right - better watch the rest of the footy and get myself to hospital for some chemo - I may not update this page until I get out as the computer is not accessible anymore.
22 June 2002
Location: Newcastle upon Tyne - At Home
Feeling: Like a normal person.
So many days feeling normal and I am wondering if I am actually sick at all. Perhaps I should stop going to hospital and just forget about this whole leukaemia gig. Surely it won't be back if I just use a bit of good ol' denial.....it is like when you take antibiotics and you feel sweet after about half the course and just can't be assed taking the rest of the course, even that you know that you should. Still I guess this is a little more serious than a wee bacterial infection...OK I will be good and go back to hospital on Tuesday for more treatment like a good cancer patient.
Seeing as I have been feeling good, I have been keeping pretty busy. James, my old friend and band mate from high school arrived on Friday night. I had not seen him for a good few years and it has been wicked catching up. He and Jess and I went out for an awesome meal at a place called Heartbreak Soup on the quayside (I highly recommend the spicy piri piri lamb kebabs). All the food was top notch and the red wine was pretty damn good too. We had a little wander around the quayside afterwards so that James could appreciate what the the local girls wear (or don't wear depending on how you look at it) on a night out.....very entertaining.
Yesterday and today were taken up largely by football. England of course going out of the competition (and my scoring prediction not too far from the mark). Those little Koreans managed to do it again and it will be interesting to see if they can keep it up against the Germans. Unlikely, but desirable.
The Hoppins is in town at the moment - it is basically a big fair kind of deal with big groups of gypos running ludicrous sideshows and old school rides. The sideshows are typical and involve shooting things with cock-eyed guns or throwing balls through hoops that are smaller etc, etc, etc. I think you would go through a lot of change before you left with one of the incredibly large and ugly soft toys that they hold to ransom. There are plenty of rides that you can go on if you like, but mostly they are crap too. We stuck to the old faithful dodgems. I think they are definitely more fun when you are drunk though....mental note for next time.
I have another visitor arriving tomorrow...my old housemate from Austin, Texas - Ginger. She is in the country on some kind of whirlwind tour and so is going to be here for the day. Will be great to see her again, it has also been quite some time since I left Texas.
20 June 2002
Location: Newcastle upon Tyne - At Home
Feeling: Just Dandy....
You are just not going to believe this, but I have still not really done much since my last update. No, honestly. I know that most of you expect that I am probably out having fun all day etc, etc - but it is not like that....life is tough when you are bored and not in hospital. I even had to buy a new game for my play station the other day!
I actually went to work today and did a few hours of productive service...no pressure or anything, we just had a bit of stuff that needed doing and I thought that was a good enough reason to get out of the house for a while. So I was back in the office just like old times (minus the hair, eyelashes, fertility, professionalism etc. etc., you get the picture). It was good for a change, but I think I will stick to being sick again come tomorrow morning...after all my saviour of boredom is back for a fleeting visit - Football.
It will be a very interesting game tomorrow...Brazil v England. Who will win? I am not sure, but I am sure I can have a guess. England could definitely do it....especially if they play like they did against Argentina. But then Brazil could also put a few goals past them and blow them off the park. I guess that there are not many people supporting Brazil in this country - so I will say that they will win.....and the score... 3 - 1. I will not be fielding bets on this outcome, nor do I really care - but it is always fun to guess. The winner can certainly be confident of a place in the final, and I guess they will have a pretty good shot at winning too. Unless those damn Koreans keep up their winning streak of course....
18 June 2002
Location: Newcastle upon Tyne - At Home
Feeling: Can't remember....
Tuesday is coming to a slow but definite close - meaning that there is no football on for the next two days to entertain me. This sounds like a bit of a problem as I will have to find other alternatives......reading or PS2?....tough call. Perhaps I will run away somewhere and sit outside all day in the sun? Perhaps it will rain and be cold? Perhaps I will just wait and see what happens....
There has really been very little going on here today - apart from seeing those little South Koreans beat Italy - quite a shock, but you have to give it to them don't you? I thought they were in trouble after missing a penalty and conceding a goal, but Italy did not exactly put much of a winning effort in. The way this competition has gone so far, you can't help but to think that New Zealand could be in the last eight if they could just have made the final 32 to begin with.
16 June 2002
Location: Newcastle upon Tyne - At Home
Feeling: A bit tired, but you get that with golden goals.
Another few days with scarcely an effort on the journal front, but that is because everything is well and there is not much to tell. I went back to hospital on Friday for my blood to be checked and it was looking so good that they gave me the week off. I was going to be in for a few days this week, but due to one of the specialists being away I need to wait another week before I start the next treatment. It is one I have had before, but they give me some special drugs after this course has finished and then plug me into a special machine for a few days to harvest my stem cells. They then freeze these and can use them later for a transplant if this is required. At the moment we are still waiting to hear the results from my brothers tests and also the bone marrow register to see just who's cells I shall be lucky enough to receive. The source of the transplant will also affect the planning of exactly when it will take place also. At present we are looking at about 6-8 weeks after my last treatment, so around about 2 months time. The source also effects the recovery time too, so it is all a bit up in the air until the type of transplant is decided. In any case they need my cells in a freezer as an option, so I had better do my best to perform I guess.
Aside from medical info, Daniel came down to visit from Edinburgh this weekend and we watched footy, played guitars and I even drank a pint of beer. Newcastle was very busy after the England game yesterday, and everyone seemed very happy about them making it through to the next round. It was very quiet here today though as the English fans were probably nursing hangovers whilst all the Irish fans were in the pubs early to see their team get eliminated. Still tough to pick the winner, but I am certainly looking forward to Fridays match when England take on Brazil....perhaps I will save my predictions until after the game from now on??
