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 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 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 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,

1 comment:

  1. Hi Kat

    Your attitude to this cml is wonderful! Not letting it become all of you or all of your life - simply great... :-)

    My 23 year old Steven also has cml and is moving on with his life in a tremendous way too - hats off to you not-such-kids-anymore for dealing with it this way!

    Thanks for sharing your thoughts in this manner - it gives me more of an insight into how it must be 'from the inside'.

    I hope all goes well with the new meds you go on - sounds like that gleevec really zapped you! I hope the next is more gentle on you.

    Love and light
    Steven's mom