Sunday, 20 May 2007
found
Just to let you know that if you were about to contribute to my charity so I can get a new camera, don't cause it has turned up!! YAY!!! (a friend had walked off with it.....)
Saturday, 19 May 2007
photos
Well I can't work out how to get photos onto the bolg, so have put an album on www.ofoto.com
If you are a member just log in and the album is called, Kats progress and recover from Leukaemia. I shall put a link on here, and hopefully it will work....
http://www.kodakgallery.com/BrowsePhotos.jsp?&collid=357720352105.
327925160505.1179577224200&page=1&sort_order=0&navfolderid=0&folderid=0&ownerid=0
I don't know if that will work, you might have to become a member and then search.....sorry, not very helpful!!!
A few of the pics are from Thursday and the races and the evening out...
XXX
If you are a member just log in and the album is called, Kats progress and recover from Leukaemia. I shall put a link on here, and hopefully it will work....
http://www.kodakgallery.com/BrowsePhotos.jsp?&collid=357720352105.
327925160505.1179577224200&page=1&sort_order=0&navfolderid=0&folderid=0&ownerid=0
I don't know if that will work, you might have to become a member and then search.....sorry, not very helpful!!!
A few of the pics are from Thursday and the races and the evening out...
XXX
Fun and Frolics in the Burg so far...
Dear All,
Well what to say?? As you have seen from my little post on Thursday I have had a check up. I was quite surprised at how my white cell count had risen quite so much in the space of 3 weeks to a month. I suppose it shows that the Gelvec was working although it made my life miserable and rather hellish. For those of you who haven't seen my little post from the other day, my white count is up from 10 at the Hammersmith check-up to 59. Due to this and that my platelet count has only dropped from 700 to 617, my dosage of hydroxycarbamide (it just kills off cells, was on it when I was in the hospital and the first couple of weeks I was out) has been put up from one mg to one and a half, or from two pills to three a day...I'm nay bothered on these drugs as they don't affect how I feel.
On a slightly rantish note, I'm not a big fan of my Edinburgh consultant as she has not written what would be helpful on my disabliity living allowence form, grrr grrr grrr which means they'll prob say no, and then I will have to appeal etc etc which is a REAL arse as I'm not working over the summer for obvious reasons and was hoping that I would be getting this by then, and it would be my income...stupid bloody medics...and she was the one who was like Glevec is soooooooooooo amazing, you'll lead a normal life and it won't affect you and it's amazing and wonderful and brilliant etc etc etc big fat bollocks it was!!!! Anyways.....so if any of you want to contribute to the Kat/Katie/Katherine (however you know me!!!) is seriously poor and won't be able to do anything over the summer due to having no money charity........
On the plus side I won't be on any chemo til at least the first week of June, WOO which means 2 more pain free fun weeks!!! On that note, you shall be pleased to hear that I have been having a nice busy social life since coming back to the burg, and as I'm no longer on my old buddies called dyhdracodine, so I can.....wait for it......drink, woo!! Hmmmm, I think I might have mentioned this in the post I did when I got back here. My drinking started again, the day before coming back up here, and well in true Kat/Katie/Katherine Ruane stylee, I didn't start drinking again slowly by having maybe a glass or two of wine with a meal etc, oh no, I jumped into a vat of it from the word go. I have not been quite so drunk as that Sunday though,(or dying so much that follwoing morning...wandering round the house packing chanting in my head 'don't be sick, don't be sick, don't be sick'!!!!!!) but I think that may have had something to do with a bottle and half to two bottles of wine and 2 shots of sambuca on an empty stomache...........need I say more?!?!?!?! I am very proud of my self that on Thursday I not only managed to be up a good hour and a half before my appointment, ok, so that does admittedly mean that I was up at 9.15, but I had a friend staying and we didn't go to bed til about 2, and the night before a fairly similar story for going to bed, and was up at 9.30 on wed, so little me who needs her sleep did not get enough, anyways back to the point, which was...ummm......oh yeah, was up with less sleep than ideal, had all my blood drained from my body, and NO that is NOT an exaggeration (ummm...la la la...I might have just seen a flying pig....!!!) went to races and had a great time, got home, cup of tea, get changed and go back out. The amount of alcohol consumed shall remain a secret (3 big glasses of wine at the races, 3 or 4 glasses at a friends before going out, a champagne coctail and another with tequila and vodka I think in a bar....then go to the club and have 5 shots etc etc etc) AND I could still walk and talk!!!! I also discovered to my delight that they do bottles of cider woo!!! I luuuuuuurve cider! Except people thought I was drinking an alcopop...AS IF!!!!! They are rank!!! But my lovely little bottle of Strongbow (drunk with a straw, yes I am that classy, did you not know that to my fathers horror I also rather like vodka and lemonade........) made me VERY happy. I don't believe in half pints, and if I had had a pint I think I would have been on the floor!! So had a really good evening seeing loads of people I haven't seen in ages. The only arse was that some (excuse my language) fucking wanker took my camera....sob, moan, wail, beating of my breast!!! (So once again, if any one wants to contribute to the above mentioned charity, I can buy another one!!!) But the slight silver lining to a huge black cloud is that I nearly lost my signet ring,...someone might have spilt their shot all over my hand....and to be honest I would rather lose my camera than my ring! So umm yes, Thursday was a very fun if not just a little bit alcoholic day! Oooh, also had I bet at the races (we went to them in Perth) I would have won cause my horse (well obviously not mine.....) won the
race it was in. But as I have said many a time, betting and alcoholism run in my family and I embrace one and not the other!!!!
What else, hmmmm, my darling flatty has gone to France with her man for 10 days, so I am home alone in the flat til I go home...sob sob sob, but worry not, I will be ok!!! Why did I say that, not sure, maybe it's cause I was remembering that I was toying with going out again last night, but remembered I only had 5 and a half hours sleep the night before and I'm ill...not the cancer,...I have a bit of a sniffly cold, sob sob sob, actually I think it's developing into a BEAUTIFUL sinus infection...thought I'd share!! And that I promised Iona I'd stay up with her til she left (at 3am) so thought should prob stay in, and I'm going out tonight, so probably would have died, or at least had liver complaint!!!
Oh, the drug got approved that went up infront of the board last week, can't remember if I've said that or not...will get it when I go home when I go for a check up at the Hammersmith. Am also having a blood test when I go home at the local surgery before i go to the Hammersmith as I think they want to keep an eye on the old cell count, so will do my best to get the results on this, but as you all know, the internet at home is gay and I can't, or at least, I couldn't log in at home, might be able to now....
Don't know what else, was on a roll, but it has fizzled away.....
Ooooh, everyone LOVES my new hair, (really need to work out how to put pics on this thing) and have been said I look chic and sophisticated, woo, get in!!!! Moi, sophisticated!!!! (well sober me anyways!!)
Well I think I shall leave this one there for the moment, if I remember anything I shall post it later. Hope alls well with eveyone....
Love, laughter and smiles as always,
XXXXXXXXXXX
Well what to say?? As you have seen from my little post on Thursday I have had a check up. I was quite surprised at how my white cell count had risen quite so much in the space of 3 weeks to a month. I suppose it shows that the Gelvec was working although it made my life miserable and rather hellish. For those of you who haven't seen my little post from the other day, my white count is up from 10 at the Hammersmith check-up to 59. Due to this and that my platelet count has only dropped from 700 to 617, my dosage of hydroxycarbamide (it just kills off cells, was on it when I was in the hospital and the first couple of weeks I was out) has been put up from one mg to one and a half, or from two pills to three a day...I'm nay bothered on these drugs as they don't affect how I feel.
On a slightly rantish note, I'm not a big fan of my Edinburgh consultant as she has not written what would be helpful on my disabliity living allowence form, grrr grrr grrr which means they'll prob say no, and then I will have to appeal etc etc which is a REAL arse as I'm not working over the summer for obvious reasons and was hoping that I would be getting this by then, and it would be my income...stupid bloody medics...and she was the one who was like Glevec is soooooooooooo amazing, you'll lead a normal life and it won't affect you and it's amazing and wonderful and brilliant etc etc etc big fat bollocks it was!!!! Anyways.....so if any of you want to contribute to the Kat/Katie/Katherine (however you know me!!!) is seriously poor and won't be able to do anything over the summer due to having no money charity........
On the plus side I won't be on any chemo til at least the first week of June, WOO which means 2 more pain free fun weeks!!! On that note, you shall be pleased to hear that I have been having a nice busy social life since coming back to the burg, and as I'm no longer on my old buddies called dyhdracodine, so I can.....wait for it......drink, woo!! Hmmmm, I think I might have mentioned this in the post I did when I got back here. My drinking started again, the day before coming back up here, and well in true Kat/Katie/Katherine Ruane stylee, I didn't start drinking again slowly by having maybe a glass or two of wine with a meal etc, oh no, I jumped into a vat of it from the word go. I have not been quite so drunk as that Sunday though,(or dying so much that follwoing morning...wandering round the house packing chanting in my head 'don't be sick, don't be sick, don't be sick'!!!!!!) but I think that may have had something to do with a bottle and half to two bottles of wine and 2 shots of sambuca on an empty stomache...........need I say more?!?!?!?! I am very proud of my self that on Thursday I not only managed to be up a good hour and a half before my appointment, ok, so that does admittedly mean that I was up at 9.15, but I had a friend staying and we didn't go to bed til about 2, and the night before a fairly similar story for going to bed, and was up at 9.30 on wed, so little me who needs her sleep did not get enough, anyways back to the point, which was...ummm......oh yeah, was up with less sleep than ideal, had all my blood drained from my body, and NO that is NOT an exaggeration (ummm...la la la...I might have just seen a flying pig....!!!) went to races and had a great time, got home, cup of tea, get changed and go back out. The amount of alcohol consumed shall remain a secret (3 big glasses of wine at the races, 3 or 4 glasses at a friends before going out, a champagne coctail and another with tequila and vodka I think in a bar....then go to the club and have 5 shots etc etc etc) AND I could still walk and talk!!!! I also discovered to my delight that they do bottles of cider woo!!! I luuuuuuurve cider! Except people thought I was drinking an alcopop...AS IF!!!!! They are rank!!! But my lovely little bottle of Strongbow (drunk with a straw, yes I am that classy, did you not know that to my fathers horror I also rather like vodka and lemonade........) made me VERY happy. I don't believe in half pints, and if I had had a pint I think I would have been on the floor!! So had a really good evening seeing loads of people I haven't seen in ages. The only arse was that some (excuse my language) fucking wanker took my camera....sob, moan, wail, beating of my breast!!! (So once again, if any one wants to contribute to the above mentioned charity, I can buy another one!!!) But the slight silver lining to a huge black cloud is that I nearly lost my signet ring,...someone might have spilt their shot all over my hand....and to be honest I would rather lose my camera than my ring! So umm yes, Thursday was a very fun if not just a little bit alcoholic day! Oooh, also had I bet at the races (we went to them in Perth) I would have won cause my horse (well obviously not mine.....) won the
race it was in. But as I have said many a time, betting and alcoholism run in my family and I embrace one and not the other!!!!
What else, hmmmm, my darling flatty has gone to France with her man for 10 days, so I am home alone in the flat til I go home...sob sob sob, but worry not, I will be ok!!! Why did I say that, not sure, maybe it's cause I was remembering that I was toying with going out again last night, but remembered I only had 5 and a half hours sleep the night before and I'm ill...not the cancer,...I have a bit of a sniffly cold, sob sob sob, actually I think it's developing into a BEAUTIFUL sinus infection...thought I'd share!! And that I promised Iona I'd stay up with her til she left (at 3am) so thought should prob stay in, and I'm going out tonight, so probably would have died, or at least had liver complaint!!!
Oh, the drug got approved that went up infront of the board last week, can't remember if I've said that or not...will get it when I go home when I go for a check up at the Hammersmith. Am also having a blood test when I go home at the local surgery before i go to the Hammersmith as I think they want to keep an eye on the old cell count, so will do my best to get the results on this, but as you all know, the internet at home is gay and I can't, or at least, I couldn't log in at home, might be able to now....
Don't know what else, was on a roll, but it has fizzled away.....
Ooooh, everyone LOVES my new hair, (really need to work out how to put pics on this thing) and have been said I look chic and sophisticated, woo, get in!!!! Moi, sophisticated!!!! (well sober me anyways!!)
Well I think I shall leave this one there for the moment, if I remember anything I shall post it later. Hope alls well with eveyone....
Love, laughter and smiles as always,
XXXXXXXXXXX
Thursday, 17 May 2007
more tomorrow
Just a quick note as am just back from the races, and am off out, but thought I'd quickly wack my cell counts from todays check up down, as some of you may be check this today to see....
White cell count 59 (cause all the glevec has now worked it's way out of my system)
Platelets 617 (down from 700).
Hope alls groovy with you all...
XXX
White cell count 59 (cause all the glevec has now worked it's way out of my system)
Platelets 617 (down from 700).
Hope alls groovy with you all...
XXX
Tuesday, 8 May 2007
And she's back in the Burg!!!
Weeel, I'm now back in the burg for 3 weeks to have fun and play with my buddies. I also discovered at the weekend that my alcohol tolerance is back up, woo!! Don't ask how much I had to drink cause I can't remember, but I do believe it was the 2 shots of sambuca that finished me off....felt rather ill the next morning, oh and that was also the morning that I had to sit in the car for 6 hours, oh and I also got home at 8.30 AM and hadn't packed....
So umm yes....
Saw the Dean of Under Graduates today and it was all very helpful. Basically I'm going to finish my 3rd year next year, and probably leave after that, even though I will only have a general degree, but I will also have the option to stay and do my final 4th (well 5th) year if I feel like it.....but I dunno, 5 years of uni, that's a long time, and another year of debt....
OOH on the plus side of getting back yesterday and opening my post, I discovered that I had been sent a disabled parking badge, WOO!!!! Free parking for the next 3 years!!!!!!!!!!!! Joy joy joy!!!!
What else, check up next Thurs, so watch this space for health update, I still feel wonderful off the drugs, lets hope this continues when I'm back on drugs!!
I've only hasd 2 cups of tea so far today and my body is complaining, so off I go to boil the kettle, and munch on some pineapple, oh have been doing a lot of raw food, and actually I'm enjoying it!! I'm still drinking tea, so that's ok, and I feel very energised of fruit, salad and lots of nuts, and the occasional chunk of cheese!!!
Right, off I toddle, not much to say, but thought I'd write a word or two, as I can log in to this at uni, woo!!
Lots of love, smiles and laughter!
XXXXXXX
So umm yes....
Saw the Dean of Under Graduates today and it was all very helpful. Basically I'm going to finish my 3rd year next year, and probably leave after that, even though I will only have a general degree, but I will also have the option to stay and do my final 4th (well 5th) year if I feel like it.....but I dunno, 5 years of uni, that's a long time, and another year of debt....
OOH on the plus side of getting back yesterday and opening my post, I discovered that I had been sent a disabled parking badge, WOO!!!! Free parking for the next 3 years!!!!!!!!!!!! Joy joy joy!!!!
What else, check up next Thurs, so watch this space for health update, I still feel wonderful off the drugs, lets hope this continues when I'm back on drugs!!
I've only hasd 2 cups of tea so far today and my body is complaining, so off I go to boil the kettle, and munch on some pineapple, oh have been doing a lot of raw food, and actually I'm enjoying it!! I'm still drinking tea, so that's ok, and I feel very energised of fruit, salad and lots of nuts, and the occasional chunk of cheese!!!
Right, off I toddle, not much to say, but thought I'd write a word or two, as I can log in to this at uni, woo!!
Lots of love, smiles and laughter!
XXXXXXX
Thursday, 26 April 2007
news from the hammersmith Hospital
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
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
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
Subscribe to:
Posts (Atom)