Sooooooooooooo, I went back to the Hammersmith on Tues to see Mr. Panay, the expert and only consultant I can see to discuss what's going to happen to me etc etc etc and gues what..HE WASN'T BLOODY THERE!!!!!!!! Thank god I had an unofficial heamatology appointment as well otherwise I would have gone fucking ballistic as I would have travelled to london and spent £30 on travel for nothing! So I get an earlier train to go to Haematology first to have a blood test (no worries, ate something whilst waiting so no near feinting...!! And the nurse was the same one as last time and also quadrouple checked..!!!) and then trot over to Gyne to announce my arrival. At least this time I was on the system, and expected and they had my notes. A miracle! The only fuck up, a lack of the consutant, so saw someone else who couldn't help and made the wonderful announcement of as I've already been on chemo, they might not be able to do the procedure...GREAT!!! I do not believe this is true as in Edinburgh they said that Glevec wouldn't affect fertility.
So, I was a little bit irritated and have been squeezed into the clinic on Friday at 11, which means getting my old buddy, the 8.45 train, which means, yes, it will be expensive and it's early and blah blah blah. If he's not there on Fri, they are going to see the biggest hissy fit they have EVER seen!! I also want to start the process going, as I have, well so far, very little faith in the competance of the Gyne department and don't want to be traipsing down from Edinburgh to have the procedure done etc cause they've taken so long to get their acts together!! Would also like to start the new chemo to see how I react to it and if I don't react well to get it sorted at the Hammersmith rather than in Edinburgh, cause lets face it, the Hammersmith is much better!
On the haematology front, everything is fine, white cell 4.9, platelets up a bit to 178, but it's all under control...!
As I finish house sitting tomorrow morning when I get on the train, I shan't be able to update my blog unless a miracle has happened at home with the laptops and broadband and let me log in, so shall write again as soon as I can....
I also hope that someone who reads this is having nice sunny weather, and not the rain that I am experiancing (every day...sun...summer???? Where is it??) If you are, tell me where you are, because I'm coming to stay!!
Lots of love etc etc
XXX
I was diagnosed with Old Man's Cancer (Chronic Myeloid Leukaemia) on the 19th January 2007 when I was 22. This is an open honest blog about what it's like living with a user-friendly cancer, taking pill chemotherapy daily, possibly for life, and everything that goes alongside it.
Thursday, 26 July 2007
Thursday, 19 July 2007
A rather dramatic check up
Well dear readers I have had yet another check up yesterday, and for once it was rather exciting, well in as much as I was quite dramatic! So I shall tell you everything from the begining.
I had a phone call last Friday saying that I had been squeezed in to a clinic at Gynaecology to see the consultant Nick Pannay at 11 on Tues the 18th. I thought brillo, cause my haematology check up was at 11.45. So I had to get up extra early (7.30..YUK!) to get the 8.47 to arrive at Paddington at 09.50, because if I got the later train, I would have got in at 10.50 and no way in hell would I have got to the hospital by 11. As it turned out I should have got the later train anyways, and been able to travel for just under 16 quid including tube all day instead of 23 pounds something, and then put money on my Oyster (for those of you unaware of said Oyster card, it's a pay as you go pass for the tube and bus that's cheaper than buying tickets from machines, unless of course you get the train AND bus/tube for fifteen squids...) anyways, enough of the cost of public transport rant.
So I arrived at the hospital at about 5 to 11 and told the receptionist that I had an appointment at 11 etc etc and that I had been rung on Fri about it etc etc The 'kind and helpful' (my arse, one of THE most UNHELPFUl) person in reply said, you're not on the system and I don't know anything about this, which was the response to everything said when I have to repeat to various people infront of the recpetionist what was happening/had happened...great! I then go and sit and wait for it to be resolevd. I'm then told that Mr. Pannay doesn't know anything about me going to the clinic, when I'm booked in for the following tues (thank god I didn't cancel the orginal appointment when I was told I was squeezed into yesterdays clinic) and also that they don't have my notes. Can I go to Haematology and get them and take them back and then they MIGHT be able to see me.
I then trotted over to the wonderful, efficiant, organized receptionists at my beloved haematology, where after walking throught the door just a little flustered and hot with cardigan and pashmina flying all over the place, I was greeted with a 'hello Katherine...are you ok?'. I explained what whas going on, was told that Gynaecology did have my notes, they had collected them the previous fri and that they are generally a disorganized nightmare! And got on the phone to try and sort it out, rather than making me go all over the hospital to try and sort it out. As Gynaecology should have done in the first place rather than making me do it, when they were aware of the Leukaemia, and STIll sent me trotting! By this point it was 11.20 and I thought sod it, sat down in Haematology and spent the next couple of hours there!
So I still have my consultation on tues to discuss the removal of eggs to be frozen...
Right, so how was my blood count etc...oh this is where is gets a bit dramatic!
When having my blood taken I began to feel REALLY weak/dizzy/feint etc so said to the nurse. It was also at this point that the blood was, well not flowing very well into the tube thing and the nurse removed the needle and got me some water. Instead of feeling better, which I usually do if I feel feint. Now I am not one of those people who feints at blood test, and I thought this was rather odd. I told her that it may be because I was a bit hungry as I had been up for hours, and my breakfast on the train of 2 apples and a pear was a lot then, (at 9am) was probable not doing much at 12.30. I had also been eating brazil nuts just before my blood test, so was slightly confuzzeled. She decided to take my blood pressure which was somethin like 55 over 60 or something and promptly made me lie down on a bed and call another nurse as I think she was worried that it was so low(and that I hadn't collapsed and was worried that I was going to!) She then trotted off to get me a cup of tea, and a couple of buscuits. ( I love the staff in Haematology!!) After about 15/20 mins I was back to my usual self and she finished the blood test with me lying down....!!!
I then went back to the waiting room and then saw the consultant. I think I have now seen every consultant there! Unlike in Edinburgh, where I only see Pat Sheppard, at the Hammersmith I see all the team. My white cell count is 4, which is fine, my platelets were around 109. I say around because when I had the test, they all clotted together which is why the blood tricked so slowly. Due to this they had to re do that blood test and am awaiting a phone call to see what the actual count is, and if I have to adjust the cell killing drug I'm taking.
So that was my rather dramatic check up yesterday!
I think thats about it really. Panic not about my bodys attempt at feinting, am absolutely fine!!
Can't think of anything else of importance.
More on Tues or Wed after the IVF consutation!
Lots of love, smiles and laughter.
XXX
I had a phone call last Friday saying that I had been squeezed in to a clinic at Gynaecology to see the consultant Nick Pannay at 11 on Tues the 18th. I thought brillo, cause my haematology check up was at 11.45. So I had to get up extra early (7.30..YUK!) to get the 8.47 to arrive at Paddington at 09.50, because if I got the later train, I would have got in at 10.50 and no way in hell would I have got to the hospital by 11. As it turned out I should have got the later train anyways, and been able to travel for just under 16 quid including tube all day instead of 23 pounds something, and then put money on my Oyster (for those of you unaware of said Oyster card, it's a pay as you go pass for the tube and bus that's cheaper than buying tickets from machines, unless of course you get the train AND bus/tube for fifteen squids...) anyways, enough of the cost of public transport rant.
So I arrived at the hospital at about 5 to 11 and told the receptionist that I had an appointment at 11 etc etc and that I had been rung on Fri about it etc etc The 'kind and helpful' (my arse, one of THE most UNHELPFUl) person in reply said, you're not on the system and I don't know anything about this, which was the response to everything said when I have to repeat to various people infront of the recpetionist what was happening/had happened...great! I then go and sit and wait for it to be resolevd. I'm then told that Mr. Pannay doesn't know anything about me going to the clinic, when I'm booked in for the following tues (thank god I didn't cancel the orginal appointment when I was told I was squeezed into yesterdays clinic) and also that they don't have my notes. Can I go to Haematology and get them and take them back and then they MIGHT be able to see me.
I then trotted over to the wonderful, efficiant, organized receptionists at my beloved haematology, where after walking throught the door just a little flustered and hot with cardigan and pashmina flying all over the place, I was greeted with a 'hello Katherine...are you ok?'. I explained what whas going on, was told that Gynaecology did have my notes, they had collected them the previous fri and that they are generally a disorganized nightmare! And got on the phone to try and sort it out, rather than making me go all over the hospital to try and sort it out. As Gynaecology should have done in the first place rather than making me do it, when they were aware of the Leukaemia, and STIll sent me trotting! By this point it was 11.20 and I thought sod it, sat down in Haematology and spent the next couple of hours there!
So I still have my consultation on tues to discuss the removal of eggs to be frozen...
Right, so how was my blood count etc...oh this is where is gets a bit dramatic!
When having my blood taken I began to feel REALLY weak/dizzy/feint etc so said to the nurse. It was also at this point that the blood was, well not flowing very well into the tube thing and the nurse removed the needle and got me some water. Instead of feeling better, which I usually do if I feel feint. Now I am not one of those people who feints at blood test, and I thought this was rather odd. I told her that it may be because I was a bit hungry as I had been up for hours, and my breakfast on the train of 2 apples and a pear was a lot then, (at 9am) was probable not doing much at 12.30. I had also been eating brazil nuts just before my blood test, so was slightly confuzzeled. She decided to take my blood pressure which was somethin like 55 over 60 or something and promptly made me lie down on a bed and call another nurse as I think she was worried that it was so low(and that I hadn't collapsed and was worried that I was going to!) She then trotted off to get me a cup of tea, and a couple of buscuits. ( I love the staff in Haematology!!) After about 15/20 mins I was back to my usual self and she finished the blood test with me lying down....!!!
I then went back to the waiting room and then saw the consultant. I think I have now seen every consultant there! Unlike in Edinburgh, where I only see Pat Sheppard, at the Hammersmith I see all the team. My white cell count is 4, which is fine, my platelets were around 109. I say around because when I had the test, they all clotted together which is why the blood tricked so slowly. Due to this they had to re do that blood test and am awaiting a phone call to see what the actual count is, and if I have to adjust the cell killing drug I'm taking.
So that was my rather dramatic check up yesterday!
I think thats about it really. Panic not about my bodys attempt at feinting, am absolutely fine!!
Can't think of anything else of importance.
More on Tues or Wed after the IVF consutation!
Lots of love, smiles and laughter.
XXX
Saturday, 7 July 2007
A say in London
Well dear readers, am currently in London Town (well Tooting...is that actually in London...debatable!!!) staying with my darling sister, so am able to log in to my blog, woop!! (the laptop won't let me type in the title bar, hense the no name....pretend it's called 'Notes from London'.)
Had another check up last Wed, all is well. White cell count 4.9, which is apparently fine and not low and nothing to worry about. Apparently when it get's to about 0.01 you begin to worry...Platelets down to something like 380ish, can't really remember, but it's all good as everything is under control.
As it's sunny, yes, it's England, it's July and the sun is FINALLY here, Claudia is playing what she calls schpangle, yes, exactly. Similar what the fuck thoughts came to my mind as well. Not sure if I've spelt it correctly, but as it's a word she's blatently made up to refer to a type of music she doesn't know the coreect terminology for, I can spell it how I like!
I have an IVF appointment booked for the 24th, yes it is quite a long way away, so my consultant is trying to get me bumped up the list. I say good luck, because the receptionist I have had the pleasure of talking to 3 times, is the most unhelpful person I have EVER come across, and obviously doesn't listen as I had to explain something three times...or she's not that bright....
I might have stem cells taken which will be fun!! Or not...hooked up to a machine for about 3 hours. That's fine and potentially exciting, as long as it doesn't hurt! I have so far escaped the most painful thing that could have happened so far, a bone marrow test, and I aim to escape all things painful for as long as pos. Not sure about the huge fuck off mile long needle that will go into my ovary though.....
Anyways, enough of this talk of long needles, cause I know that if my dear papa is reading this, he will be sitting down and slightly green...!!!!!
What else, I don't really know. Another check up in about 10 days. Been riding alot, have some exciting house sitting coming up! TV, WOOP!!! So happy!!! Have a friends birthday dinner party tonight, and that's about it really. Nothing of interest comes to mind. Although to be fair, I don't always put things of interest on this!!
As Claudia is up and about, and we need to decide what to do today, I shall bugger off!!
Love, laughter and smiles as usual!
XXX
Had another check up last Wed, all is well. White cell count 4.9, which is apparently fine and not low and nothing to worry about. Apparently when it get's to about 0.01 you begin to worry...Platelets down to something like 380ish, can't really remember, but it's all good as everything is under control.
As it's sunny, yes, it's England, it's July and the sun is FINALLY here, Claudia is playing what she calls schpangle, yes, exactly. Similar what the fuck thoughts came to my mind as well. Not sure if I've spelt it correctly, but as it's a word she's blatently made up to refer to a type of music she doesn't know the coreect terminology for, I can spell it how I like!
I have an IVF appointment booked for the 24th, yes it is quite a long way away, so my consultant is trying to get me bumped up the list. I say good luck, because the receptionist I have had the pleasure of talking to 3 times, is the most unhelpful person I have EVER come across, and obviously doesn't listen as I had to explain something three times...or she's not that bright....
I might have stem cells taken which will be fun!! Or not...hooked up to a machine for about 3 hours. That's fine and potentially exciting, as long as it doesn't hurt! I have so far escaped the most painful thing that could have happened so far, a bone marrow test, and I aim to escape all things painful for as long as pos. Not sure about the huge fuck off mile long needle that will go into my ovary though.....
Anyways, enough of this talk of long needles, cause I know that if my dear papa is reading this, he will be sitting down and slightly green...!!!!!
What else, I don't really know. Another check up in about 10 days. Been riding alot, have some exciting house sitting coming up! TV, WOOP!!! So happy!!! Have a friends birthday dinner party tonight, and that's about it really. Nothing of interest comes to mind. Although to be fair, I don't always put things of interest on this!!
As Claudia is up and about, and we need to decide what to do today, I shall bugger off!!
Love, laughter and smiles as usual!
XXX
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