Weeeellllllllll, where to start??? I suppose the beginning, but that would be Jan 19th, and I've already written about all of that, so the beginning is not the place to start. So I'm afraid the Sound of Music was WRONG!!! You all with me?? No??? Never mind. (rubbish, pathetic. Where were you during your childhoods?? Obviously not watching the Sound Of Music on repeat!!!....on second thoughts, does that make me a loser??? Anyways...move on quickly Katherine, blab about something else, you'll confuse them even more and they wont have a clue about what your banging on about!!!!!!)
Ok, let's go back to the 17th April when I had my appointment at the hammersmith.
For once I did not feel that I was in God's waiting room as I did not go during their normal clinic, yay!! And why is that?? Cause I'm (cover your ears Grandma) fucking special, that's why.
So I met with a wonderful woman called Jane Apperly, whose Nephew is at Edinburgh...small world, anyways Katherine stop wondering off the point! Unlike in Edinburgh I saw her for about 45 minutes rather than the 30 seconds I have in the Burg which was really great, and she explained in normal English what was going on in my body which I hadn't really grasped. This is because when I was told in Edinburgh I was in the hospital when I was A) in shock and therefore my brain had shut down, and B) was told with lots of lovely medical and sciencey words so understood about 1%...so I now know what CML actually is, woo!!! We also had a long chat about Glevec (can't remember how to spell it now) and how I'm completely intolerant to it etc etc etc so have been taken off it for good. Due to this and my youth and otherwise good health etc they were talking a lot about how I may end up having a bone marrow transplant. Compared to in the Burg where they had every confidence in the drugs working and fixing me.....To be honest, if it does end up in a transplant I'm not that fussed. My hair, although I will initially loose it, will grow back curly, WOO!!! PARTY!!!! And Claudia has promised to shave her head, and lets face it that would be worth a giggle or 5000000000000000, so at least I would be bald and amused!!! The only part about it that I'm not too keen on is that it would make me effectivly infertile, so would have to have an operation to have part of my ovary removed and with it eggs to be frozen so I could have children in the future, but at least they can do that and leave me the option to have children, whereas not all that long ago, that probably wouldn't have been an option, and it would have been bye bye to having children for good. The transplant would also mean 100% cure rather than an oppresant (oppresent? Can't spell, is it even a word??? I do not know!!) which is what the chemo does, so that's my thoughts on that.
Well my thoughts for this moment in time, no doubt they will grow and change depending on what happens and on how I feel. At the moment I feel absolutely fantastic as I'm completley drug free, woo!! I didn't realise how much the drugs changed how I feel.
I had an interesting couple of days last week when I stopped taking my pain killers. I had not realise how powerful dhidhracodine (not sure on that spelling) were simply because they did not deaden the pain and I had to take ibroprufen on top of them. I went to a party on Saturday, ( I was very brave, not only did I go on my own knowing only about 5 people, I also was sober!!!!) and was sitting next to someone who had been on d...codine after some back surgery and said weren't they wonderful and amazing, and spaced you out and made you feel nothing. I promptly replied 'no, they are shit, and don't work' to his utter amazement!! He then said he had some valium if I wanted to take some......For those of you who are wondering why I took them if they didn't work properly, the reason is that I was terrified that I would be in so much more pain if I didn't take them. The sort of pain I was in was that I could hardly move and I was still in agony...oh the joys!!! Anyways, so last week I was finally pain free!!!
WOOOOOOOOOOOOOOOOOOO!!!! For the first time since, Feb, or even the end of Jan, can't remember when I started to hurt, it all blends into one! So I promptly stopped taking them. 24 hours later, I felt and was sick, hot/freezing etc etc etc With out realising it I had gone cold turkey. I can tell you with my hand on heart that I seriously feel for junkies who go cold turkey, and I can understand why people get addicted in order not to go through it. On the plus side lost over half a stone in 3 days...GET IN!!!! PARTY!!!! Beat that Kev!!!! I have of course subsequently put a bit back on....sob!!! Mummy shush, I was not too thin! Anyways I shall stop banging on about my weight....
So what else. When I go back up to the burg on the 7th May I will have a check up at somepoint and talk to my edinburgh consultant about another drug I can go on, that is awaiting approval by the Nice board, whoever they are. If it is not approved, there is yet another drug that I can be put on under the guise of a trial. I can't remember if I've mentioned the trial I was asked to do when I was in the hospital and said no to cause there was an arm of it that involved injecting myself and I didn't want to do that so said no.. On reflection, thank god for that cause another arm was double the dose of Glevec, and imagine how ill I would have been on that, and they would no doubt have hauled me into hospital for observation bollocks....so anyways this other drug has actually had all the trial stuff done for it, but it's also waiting for approval of somesort, but it perfectly safe to take....so they would put me in the trial in order for it to be prescribed although the trial has actually already been done. THe only bugger is, there is no guarantee that they wont make me hurt....according to Jane Apperly (Hammersmith consultant) they don't know why the drugs make people hurt. Interesting! If I can't take either of these 2 other drugs, they will put me back on the Glevec but on a lower dose with an even more hard core painkiller if needed and gradually increase the dosage.
Well I think that's about it, my hands hurt as I've been typing non stop for about half an hour!!! I want all of you to know, that although drugwise it's a bit of an arse not knowing what's going on etc etc I'm really very happy at the moment, and I want NO sad thoughts!!!!
Oh, cell count, white count 10 which is normal (remember that doesn't mean better, I've still got a mix of good and bad white cells), which is pretty bloody good, platelets 700 which is rather high, meant to be 150-200 so am being posted a drug, which I've been on before to knock the count down. I've basically just got very thick blood at the mo, as platelets help the blood clot when you cut yourself. On the uni front, they are being arses and making my life very hard and not putting through what I want to happen in order to get back to work, as it were as soon as pos, so have the Kev on the case!! He he he They wont know what's hit them!!!!
So on that note, lots of love smiles and laughter, Nest update after my check up back in the burg,
XXXXXXXXXXXXXXXXXXXXXXx
Thursday 26 April 2007
Saturday 14 April 2007
News from Norfolk!
Yo yo yo, I'm back!!!
Well at the moment I am staying with my Grandparents in Norfolk. (My mummys ma and pa and am being spoilt and treated like a princess etc etc, as I should be!!!!) Due to them being very un grandparentish my grandma has a laptop and wireless (take note Kevin, you parents in law have wireless!!!) and I am able to acess my blog, so thought I'ld log in and write you all an update as the internet is stupid at home (maybe we need to update to a new wireless router!!) and I can't log in, and feel very neglectful of you all.
Well the last time I wrote something I was in London in my mummys office using a laptop there on the sly, so didn't write much as I had emailed myself a blog to post, and seem to remember adding a little one as well....
So now I have nice short hair, and have had many compliments about it. I think some were a bit wary of my chopping off so much in one go!!! For those of you who read this and have facebook, check it out. Not great pics of me, but they show the hair!! Anyways, so after the hairdresser checking with me about 50 million times that I wanted to cut all that hair off, he did, and I think he enjoyed having to much to cut off!! He also found a streak of grey which he thought was fabulous and amazing etc etc etc I did not. Thank god it's hidden by hair that sits on top of it. When telling my mother with an almost trembling lip she said, 'oh yes, I knew that, I found them when I was playing with your hair!' Thank you oh dear mother of mine for sharing that at home with me so Icould have had a good blub over it!!
On the whole blubbing note, I get a bit upset when things throw me, and found myself nearly in tears in the carphone warehouse of all places! The reasoning for this close blub was that I'm going to change my phone and tarrif, and network and thought that I would do it on Wed when I went into the happening place of Newbury so had it planned in my head that it would all happen, but no! the mobile gods were against me!!!! I'm doing this because I hate my phone with a passion. LG chocolate white. Very pretty, but a piece of shit. It does my head in!! So after going in and discussing the various ways of getting a new handset and keeping my number resulted in me having to buy a new handset, ( no way, the one I want costs £300..any generous doners???.....thought not) I got a bit depressed about the whole thing until I mentioned that I have insurence. A HA said the person in the shop. Due to this after having insurence for 6 months (as I do) you can change tarrif/network and get a new phone and you don't have to pay off the rest of your current contract, we do!!! YAY YAY YAY....PARTY WOO!!! BUT he said, you can't keep your number, arse, arse, bollocks, arse, becuase it is an arse changing your number, expecially when it will be your 3rd mob number in a year (don't ask) But after thinking about it, and as I have rubbish vodaphone reception at home, I thought, ok, I'll do it. So last Wed, went into the carphone warehouse to do the swap, and was asked, 'do you have your charger? Box that you got the phone in? No....sorry, you can't get your new contract, oh and you do realise you have to give your phone in now.' And I was not prepared for this, stupid arse that I spoke to the week before hadn't told me any of this, and as I said previously, I don't take shocks well.....so I took some deep breaths, and left the shop quickly with brimming eyes. I took control of myself and went back to find out exactly what I had to give in when I change my phone. I also found out that the deal I want is not available yet with the Nokia I want, even though the bloke I spoke to the week before said it was. I was very adult, said I'd wait a month and do it when I can get the phone on T mobile. For some reason T mobile has great coverage at home and in flats that have reception black spots in Edinburgh. So am now stuck with stupid bloody phone and network for another month. That was not why I have told you about my mobile issues, but because I nearly started crying becuase the outcome was not what I expected it to be!! Bewarned, I have to be handled with care!!
Ok, onto the medical stuff which is the only reason (I assume)why you read this. After spending a week off the Glivec due to the stupid amounts of pain, and upping the pain killer dosage to 60mg of codine plus 200mg of ibroprufen every 6 hours and still not being able to move or sleep, I went back on it, and on Easter Sunday (5 days after being back on it) the pain came on really suddenly, and I had a chattering jaw on top of it. (as if I was shivering). So have been taken off it once again, and when I have my check up on Tues on London, I am being put on a different drug, (as I am now officially Glivec intolerant), at this moment in time, I can't remember what it's called. I assume it does the same sort of stuff as the Glivec.
I have also sorted out uni stuff, fingers crossed. I am going to finish my third year next year, and either graduate witha three year degree from Edinburgh, so I have a qualification of somesort, and graduate with all my buddies...with the option to go back and do a final fourth year and finish honours if I feel like it. At the moment 5 years of uni is not that appealing, but we shall see what I feel like when we get there. I also know that one of my friends is staying in edinburgh for a year after graduating as she is doing an art course, so I know I can live with her if I go back and do a fouth year.
What else, I don't know really. I'm loving being at home and looked after and am planning lots of holidays over the summer. I have at least 4 weeks of holidays so far!! As I'm not working, I might as well go abroad and get nice and brown, and really enjoy not working, as most holidays I work, and don't have much time off!! So I'm making up for it this summer!!
I have no idea what else to say, so shall bugger off before this becomes really dull!!
Hope all is well with everyone, and they are enjoying the beautiful sunny weather!!
Lots of love, laughter and smiles as usual!!!
XXX
Well at the moment I am staying with my Grandparents in Norfolk. (My mummys ma and pa and am being spoilt and treated like a princess etc etc, as I should be!!!!) Due to them being very un grandparentish my grandma has a laptop and wireless (take note Kevin, you parents in law have wireless!!!) and I am able to acess my blog, so thought I'ld log in and write you all an update as the internet is stupid at home (maybe we need to update to a new wireless router!!) and I can't log in, and feel very neglectful of you all.
Well the last time I wrote something I was in London in my mummys office using a laptop there on the sly, so didn't write much as I had emailed myself a blog to post, and seem to remember adding a little one as well....
So now I have nice short hair, and have had many compliments about it. I think some were a bit wary of my chopping off so much in one go!!! For those of you who read this and have facebook, check it out. Not great pics of me, but they show the hair!! Anyways, so after the hairdresser checking with me about 50 million times that I wanted to cut all that hair off, he did, and I think he enjoyed having to much to cut off!! He also found a streak of grey which he thought was fabulous and amazing etc etc etc I did not. Thank god it's hidden by hair that sits on top of it. When telling my mother with an almost trembling lip she said, 'oh yes, I knew that, I found them when I was playing with your hair!' Thank you oh dear mother of mine for sharing that at home with me so Icould have had a good blub over it!!
On the whole blubbing note, I get a bit upset when things throw me, and found myself nearly in tears in the carphone warehouse of all places! The reasoning for this close blub was that I'm going to change my phone and tarrif, and network and thought that I would do it on Wed when I went into the happening place of Newbury so had it planned in my head that it would all happen, but no! the mobile gods were against me!!!! I'm doing this because I hate my phone with a passion. LG chocolate white. Very pretty, but a piece of shit. It does my head in!! So after going in and discussing the various ways of getting a new handset and keeping my number resulted in me having to buy a new handset, ( no way, the one I want costs £300..any generous doners???.....thought not) I got a bit depressed about the whole thing until I mentioned that I have insurence. A HA said the person in the shop. Due to this after having insurence for 6 months (as I do) you can change tarrif/network and get a new phone and you don't have to pay off the rest of your current contract, we do!!! YAY YAY YAY....PARTY WOO!!! BUT he said, you can't keep your number, arse, arse, bollocks, arse, becuase it is an arse changing your number, expecially when it will be your 3rd mob number in a year (don't ask) But after thinking about it, and as I have rubbish vodaphone reception at home, I thought, ok, I'll do it. So last Wed, went into the carphone warehouse to do the swap, and was asked, 'do you have your charger? Box that you got the phone in? No....sorry, you can't get your new contract, oh and you do realise you have to give your phone in now.' And I was not prepared for this, stupid arse that I spoke to the week before hadn't told me any of this, and as I said previously, I don't take shocks well.....so I took some deep breaths, and left the shop quickly with brimming eyes. I took control of myself and went back to find out exactly what I had to give in when I change my phone. I also found out that the deal I want is not available yet with the Nokia I want, even though the bloke I spoke to the week before said it was. I was very adult, said I'd wait a month and do it when I can get the phone on T mobile. For some reason T mobile has great coverage at home and in flats that have reception black spots in Edinburgh. So am now stuck with stupid bloody phone and network for another month. That was not why I have told you about my mobile issues, but because I nearly started crying becuase the outcome was not what I expected it to be!! Bewarned, I have to be handled with care!!
Ok, onto the medical stuff which is the only reason (I assume)why you read this. After spending a week off the Glivec due to the stupid amounts of pain, and upping the pain killer dosage to 60mg of codine plus 200mg of ibroprufen every 6 hours and still not being able to move or sleep, I went back on it, and on Easter Sunday (5 days after being back on it) the pain came on really suddenly, and I had a chattering jaw on top of it. (as if I was shivering). So have been taken off it once again, and when I have my check up on Tues on London, I am being put on a different drug, (as I am now officially Glivec intolerant), at this moment in time, I can't remember what it's called. I assume it does the same sort of stuff as the Glivec.
I have also sorted out uni stuff, fingers crossed. I am going to finish my third year next year, and either graduate witha three year degree from Edinburgh, so I have a qualification of somesort, and graduate with all my buddies...with the option to go back and do a final fourth year and finish honours if I feel like it. At the moment 5 years of uni is not that appealing, but we shall see what I feel like when we get there. I also know that one of my friends is staying in edinburgh for a year after graduating as she is doing an art course, so I know I can live with her if I go back and do a fouth year.
What else, I don't know really. I'm loving being at home and looked after and am planning lots of holidays over the summer. I have at least 4 weeks of holidays so far!! As I'm not working, I might as well go abroad and get nice and brown, and really enjoy not working, as most holidays I work, and don't have much time off!! So I'm making up for it this summer!!
I have no idea what else to say, so shall bugger off before this becomes really dull!!
Hope all is well with everyone, and they are enjoying the beautiful sunny weather!!
Lots of love, laughter and smiles as usual!!!
XXX
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