So, I had my lumbar puncture on Thursday which went alright really. Mum and I got off the plane about 11am and went straight to Charing Cross Hospital. I got my blood taken and then we went down to the ward to get the LP. Bumped into one of the docs from Hammersmith (who is originally from Rutherglen) and it was nice to see a friendly face. We also bumped into the Prof but he had to stay far back as he curently has a cold! I didn't feel that nervous about the LP, but after waiting about 3 hours the nerves did start to kick in.. It lasted longer than I thought but it didn't hurt too much - the worst part was probably the local anaesthetic. The doctor was very particular and took five tubes of fluid from my spine - I thought this was quite a lot! I hated not seeing what was going on so Mum had to tell me exactly what was happening step by step. However, she didn't tell me the size of the needle until after.. The doctor advised me to lie down for a few hours and to drink a lot of caffeine as this (apparently) prevents a severe headache after the LP. I was lucky to not get a headache so Mum and I left about 6.30 to go to Daphne's. We went out for dinner with Daphne and then just went to bed as we had a very early start the next morning. We left about 5.20am to get to the airport and everything went very smoothly. It's probably a good thing that I didn't have any time to stop at the Mac counter...
We got the prof to chase up the results for the LP yesterday and they came back normal so that's a relief. I was told that the procedure wasn't necessary but it is reassuring that the cancer hasn't spread anywhere else (that we know of). Also, my HCG has been below 2 since November. This means that the high dose has been given the go ahead (as long as I can get a bed..).
I've been trying to get things sorted today but I don't really feel like I've achieved anything! I've laid everything out on James' bed so I just need to pack it. Last time I took far too many clothes but I am not a light packer at all!
Suprisingly, at the moment, I feel OK about going. I think I have forgotten how bad it was the last time... However, I am concentrating on the fact that this will hopefully be my last round of chemo and then I can focus on getting better. I feel physically stronger than I did going into the high dose in December and at least this time I know what will happen. It's not going to be nice but I know I have to remember it does get better. Mum will be with me the whole time and I will have visitors each weekend. It feels rather strange that I will most likely be in hospital for all of March but March is a rubbish month anyway yeah?!
I have no big plans tonight at all. My hair has started to grow in (well, it's pretty patchy) but I know it will fall out again. I don't like waking up with hair all over my pillow so I'm going to get Rona and Teenie to shave it for me (even though Ruth is the expert now!). Right, I best go and gather the rest of my clothes. Happy Saturday all.
Saturday, 26 February 2011
Wednesday, 23 February 2011
Jumping through hoops
This is just a wee quick update as things went a bit up in the air yesterday! Mum and I had planned to go to Edinburgh for the day and I was sitting in the car waiting to go when Mum got a call from the doctor. Typical. She said as my MRI was clear she wanted me to get a lumbar puncture to check the HCG level in my spinal fluid. She then said I would have to get this in London and it would need to be done on Thursday, which would mean travelling to London on Wednesday (as in today). After she hung up I was not happy at all. It felt like it was the last straw - nobody had explained why I needed this lumbar puncture, what it was, why I needed to go to London, what the procedure would involve etc. Basically, we knew nothing. I called my nurse and went a bit mental asking her all these questions (and more). She was helpful and called back about an hour later to try and calm me down and explain. I was totally thrown, it feels whenever plans are made they fall through. Also, the prospect of trying to pack everything in a day and feeling very rushed was not appealing! As Mum said yesterday, it feels like we're constantly jumping through hoops yet the hoops keep moving. This makes things a lot more difficult!
Anyway, we managed to speak to the prof and he explained it all to me. He doesn't think he will find anything in the spinal fluid but he is checking just to be sure. If all goes to plan, I will still be getting the high dose next week. We have decided to fly down early on Thursday morning and come back to Glasgow on Friday morning (for two days..). I didn't want to be stuck in London not feeling prepared and the prof is fine for me to do this. Apparently, the most common side effect of an LP is a really bad headache so hopefully I'll be fine. Sorry this is very rushed, just thought it'd be easier to write it here than send a mountain of texts explaining what was going on! I'm going to go into town with Teenie in a wee while to grab some bits and bobs before we go, I just can't think what I need! AHHHH!
Anyway, we managed to speak to the prof and he explained it all to me. He doesn't think he will find anything in the spinal fluid but he is checking just to be sure. If all goes to plan, I will still be getting the high dose next week. We have decided to fly down early on Thursday morning and come back to Glasgow on Friday morning (for two days..). I didn't want to be stuck in London not feeling prepared and the prof is fine for me to do this. Apparently, the most common side effect of an LP is a really bad headache so hopefully I'll be fine. Sorry this is very rushed, just thought it'd be easier to write it here than send a mountain of texts explaining what was going on! I'm going to go into town with Teenie in a wee while to grab some bits and bobs before we go, I just can't think what I need! AHHHH!
Sunday, 20 February 2011
We'll all float on ok
I heard a version of this song on the radio the other day and since then it has been stuck in my head.. I saw Modest Mouse live a few years ago with Louise at Connect and they were great. This song is pretty repetitive though and starting to get on my nerves..
Anyway, I have had an incredibly busy week - well in my terms of busy! Last week was filled with tests which were pretty much non stop. I had my MRI on Wednesday, Thursday was (let's see if I can remember them all...) dentist, blood tests, hickman line rubbish, audiology, lung function test, ECG and a Chest X Ray and on Friday I had the MUGA scan. Thursday felt like an incredibly long day. I was really worried about the MRI from the day before (basically walking about all day convinced I had a tumour in my face somewhere) and at the audiology (hearing test) the lady told me my hearing has been hit pretty hard by the chemo. The doctors did tell me my hearing could be affected but I don't think I realised how much it was going to be. She showed me my results from June and Thursdays results and even I could see there was a pretty big difference. She said I now have a problem hearing high frequency's which didn't really mean much to me. I told her I've noticed quite a big difference when I am in a room full of people and I'm trying to talk to one person - I can't seem to shut out other conversations which makes it very hard to hear anything. I've never really had very good hearing and it's something I've always been quite sensitive about (not quite sure why). She also added that it will probably get worse after the next round of high dose and that I'll most likely need a hearing aid. As you can tell, I am not happy about this at all. It feels like my hearing is just adding to the, now extensive, list of things that makes chemo so rubbish. It seems quite contradictory that something, which is supposed to make you better, can cause so much other damage to your body.
On Friday morning I got a call from the Beatson to say that the MRI of my head was normal - I was so relieved. The annoying thing with all these tests is the waiting for the results. I constantly feel like I'm holding my breath waiting for someone to tell me bad news. I was so thankful it was fine, it had been a very stressful few days! The numbness has now spread to my bottom lip (it kinda feels like I've just been to the dentist). It is most likely the neuropathy moving it's way up (which is possible) or a vitamin deficiency (which we're waiting the bloods back on).
While I was in the MUGA scan on Friday (which lasts about 40 mins while they take pictures of your heart) all I could think about was this blue French Connection dress that I really wanted.. Yeah I know this sounds really lame but I don't care! I'd seen it in a couple of magazines and it was a limited edition dress (only 2000 being made) and was going on sale on Saturday. I was trying to think how I would get one without actually having to go into the shop at 9am the next day... I mentioned this to Jamie the night before in passing (well, I maybe spoke about it for a wee while) and when I got back on Friday the dress was sitting on my bed! I was very shocked for two reasons - 1. I didn't think the dress was out and 2. I didn't know Jamie listened when I talked about dresses! I have wanted a one shoulder dress for ages yet whenever I see one I like, the shoulder always seems to be on the right hand side. Now, normally this would not be an issue, however, when one has a hickman line it becomes more of a debacle. This dress has a REALLY big shoulder on the left hand side, which is perfect to cover the line. So, well done Jamie! It was Gordon's birthday last night so I got the opportunity to wear it then. So what if I was over-dressed for a curry! Ruth dressed up too so we were over-dressed together. It was a lovely night and a random lady even commented on how beautiful my hair was. I didn't tell her it was a wig... It was pretty funny though. Oh here's a picture of the dress - you can't really see it though!
Last Sunday we had the Devoti's round for lunch, they are the loveliest family. I had lots of party bags left over from my party (which I kinda forgot to give out.. Sorry) so we raided them for bubbles, yoyo's and the like.
The bracelet fitted Amily but not me...
I think these pictures are so cute.. James was taking snaps on his laptop which scared them a little bit!
I didn't make it to church today which I'm annoyed about. It was Communion this morning but I just didn't have the energy to get myself up. My back and my head have been getting quite sore as I'm getting GCSF injections again. I'm just being quite pathetic today, let's hope I get a good sleep and feel a bit brighter tomorrow!
The plan is still to go back down to London next Sunday. I've not really thought about it as whenever I do I get incredibly scared so I try to forget about it. However, I know it is gradually creeping up on me so I will have to think about it soon! Maybe not tonight though... I was given quite a few new books for my birthday (thank you!) so I'm going to start one of them tonight, think I'll get a cup of tea too. I also have a little tub of Granny's tablet beside my bed.. I was initially just hiding it from Dad but I quite like it being there.. Think I'll head now, I hope everyone had a lovely weekend.
Anyway, I have had an incredibly busy week - well in my terms of busy! Last week was filled with tests which were pretty much non stop. I had my MRI on Wednesday, Thursday was (let's see if I can remember them all...) dentist, blood tests, hickman line rubbish, audiology, lung function test, ECG and a Chest X Ray and on Friday I had the MUGA scan. Thursday felt like an incredibly long day. I was really worried about the MRI from the day before (basically walking about all day convinced I had a tumour in my face somewhere) and at the audiology (hearing test) the lady told me my hearing has been hit pretty hard by the chemo. The doctors did tell me my hearing could be affected but I don't think I realised how much it was going to be. She showed me my results from June and Thursdays results and even I could see there was a pretty big difference. She said I now have a problem hearing high frequency's which didn't really mean much to me. I told her I've noticed quite a big difference when I am in a room full of people and I'm trying to talk to one person - I can't seem to shut out other conversations which makes it very hard to hear anything. I've never really had very good hearing and it's something I've always been quite sensitive about (not quite sure why). She also added that it will probably get worse after the next round of high dose and that I'll most likely need a hearing aid. As you can tell, I am not happy about this at all. It feels like my hearing is just adding to the, now extensive, list of things that makes chemo so rubbish. It seems quite contradictory that something, which is supposed to make you better, can cause so much other damage to your body.
On Friday morning I got a call from the Beatson to say that the MRI of my head was normal - I was so relieved. The annoying thing with all these tests is the waiting for the results. I constantly feel like I'm holding my breath waiting for someone to tell me bad news. I was so thankful it was fine, it had been a very stressful few days! The numbness has now spread to my bottom lip (it kinda feels like I've just been to the dentist). It is most likely the neuropathy moving it's way up (which is possible) or a vitamin deficiency (which we're waiting the bloods back on).
While I was in the MUGA scan on Friday (which lasts about 40 mins while they take pictures of your heart) all I could think about was this blue French Connection dress that I really wanted.. Yeah I know this sounds really lame but I don't care! I'd seen it in a couple of magazines and it was a limited edition dress (only 2000 being made) and was going on sale on Saturday. I was trying to think how I would get one without actually having to go into the shop at 9am the next day... I mentioned this to Jamie the night before in passing (well, I maybe spoke about it for a wee while) and when I got back on Friday the dress was sitting on my bed! I was very shocked for two reasons - 1. I didn't think the dress was out and 2. I didn't know Jamie listened when I talked about dresses! I have wanted a one shoulder dress for ages yet whenever I see one I like, the shoulder always seems to be on the right hand side. Now, normally this would not be an issue, however, when one has a hickman line it becomes more of a debacle. This dress has a REALLY big shoulder on the left hand side, which is perfect to cover the line. So, well done Jamie! It was Gordon's birthday last night so I got the opportunity to wear it then. So what if I was over-dressed for a curry! Ruth dressed up too so we were over-dressed together. It was a lovely night and a random lady even commented on how beautiful my hair was. I didn't tell her it was a wig... It was pretty funny though. Oh here's a picture of the dress - you can't really see it though!
Last Sunday we had the Devoti's round for lunch, they are the loveliest family. I had lots of party bags left over from my party (which I kinda forgot to give out.. Sorry) so we raided them for bubbles, yoyo's and the like.
The bracelet fitted Amily but not me...
I think these pictures are so cute.. James was taking snaps on his laptop which scared them a little bit!
I didn't make it to church today which I'm annoyed about. It was Communion this morning but I just didn't have the energy to get myself up. My back and my head have been getting quite sore as I'm getting GCSF injections again. I'm just being quite pathetic today, let's hope I get a good sleep and feel a bit brighter tomorrow!
The plan is still to go back down to London next Sunday. I've not really thought about it as whenever I do I get incredibly scared so I try to forget about it. However, I know it is gradually creeping up on me so I will have to think about it soon! Maybe not tonight though... I was given quite a few new books for my birthday (thank you!) so I'm going to start one of them tonight, think I'll get a cup of tea too. I also have a little tub of Granny's tablet beside my bed.. I was initially just hiding it from Dad but I quite like it being there.. Think I'll head now, I hope everyone had a lovely weekend.
Tuesday, 15 February 2011
Halfway to 50
On Friday I turned the grand old age of 25... HOW SCARY?! I can't believe I'm 25. Mental. I had a lovely day with Mum, Teenie and Ruth and then had a party at Ruth, Jamie and Ally's flat in the evening. As I had lost so much weight during the high dose, I had planned to wear Rona's grad ball dress (which did fit me three weeks ago). However, when I tried it on again, it was a wee bit snug.. So, obviously I had to go out and buy a new dress - what a shame! I managed to find one in French Connection which I loved. Teenie took a wee snap of me trying it on..
Friday was a great night and everyone made such an effort to dress up - very nice! I received such lovely presents, people have been far too kind to me! Here are some pictures of the night (mainly for Granny's benefit.. more will follow).
Last Thursday there was a bit of a drama with my hickman line - one line wouldn't flush and there was an issue as to whether it would have to be taken out. I was NOT happy about this (obvs) and we went back on Sunday to try again and it seemed to work (well, that's the story in brief anyway). I had it flushed again today and it didn't work... I just hope it's being temperamental and will kick back into action soon!
This week is really busy as I have a lot of tests before I go back to London. Today I had a kidney function test which involved five blood tests and lots of sitting about, so it was rather dull. At the moment I have a really numb chin, which we're hoping is another side effect of the chemo (the neuropathy moving up my body) but we've planned an MRI tomorrow to double check. I've had MRI's before so I'm not nervous about this, I'm just worried about the results. I'm just hoping it's fine. I also have tests on Thursday and Friday so this week isn't going to be much fun.
My Auntie R and cousins from Skye are coming down for a few days so it will be good to see them. Oh, and watched The Social Network with Jamie yesterday, I thought it was great! I don't have much else to report so I shall go now, night all.
Tuesday, 8 February 2011
Thought of the day...
I just finished reading an article in a magazine about a young lady who has been diagnosed with terminal cancer and has not told anyone about it. Apparently there is a TV programme on at the moment called 'The Big C', in which the main character does exactly this. She is told she has a malignant melanoma and doesn't have long to live. When she hears this she decides to keep it to herself and go out and do everything she has wanted to do previously - travel, only eat desserts, build a swimming pool etc. I've not watched this TV programme but from hearing this, it doesn't really appeal to me. The lady who wrote the article has said she doesn't want to tell anyone about her illness as she doesn't want to upset anyone and she feels people will treat her differently. I cannot imagine how she is coping. I would not have been able to cope at all if it wasn't for my family and friends. She also said that she didn't want people to do everything for her and she hated asking for help - I'd like to think I was pretty independent before, but now have to rely on people to do everything for me. The bad thing is, I'm totally getting used to it.. I don't really have any huge point to make about this, but I just felt so sad for this lady. Obviously people deal with these things in different ways but I have found my support network to be invaluable. I guess it just made me think again at how lucky I am to be surrounded by such a great bunch. It's also been the first time I've wanted to write to someone in a magazine (I've written to magazines before, but not a specific person).
I have been very lazy today - I had intentended to make banana bread but this never happened.. Maybe tomorrow. On Friday we had Rosanna's birthday ceilidh which was great. It was great to see the family. However, it was very frustrating to be at a ceilidh and not be able to participate in the dances! I am walking a lot better now but my legs will still occasionally give way - dancing was a definite no no. We all got dressed up for the occasion, here are some snaps.. As you can see, I decided to bring out the white wig again.
Mum and Auntie Sheana
The family who were in attendance.
Rory showing Dad a magic trick..
Me and Grace
Rosanna and Rory
When we got back home, Rory was quite keen to try on my selection of wigs... Here he is as a redhead.
Rory is very into Science and the next morning wanted to show us some experiments. First up he showed us that you can fill a glass of water to the brim, pour sugar into it and the water won't overflow as the sugar contains 'sockets' (as he called it). We managed this until I got over eager and spilt the water..
He then showed us how to make a 'lava lamp' with water, oil and food colouring.
I hated Science at school, but this was fun!
Oh, better go Ruth's at the door!
I have been very lazy today - I had intentended to make banana bread but this never happened.. Maybe tomorrow. On Friday we had Rosanna's birthday ceilidh which was great. It was great to see the family. However, it was very frustrating to be at a ceilidh and not be able to participate in the dances! I am walking a lot better now but my legs will still occasionally give way - dancing was a definite no no. We all got dressed up for the occasion, here are some snaps.. As you can see, I decided to bring out the white wig again.
Mum and Auntie Sheana
Rory showing Dad a magic trick..
Me and Grace
Rosanna and Rory
Rory is very into Science and the next morning wanted to show us some experiments. First up he showed us that you can fill a glass of water to the brim, pour sugar into it and the water won't overflow as the sugar contains 'sockets' (as he called it). We managed this until I got over eager and spilt the water..
He then showed us how to make a 'lava lamp' with water, oil and food colouring.
I hated Science at school, but this was fun!
Oh, better go Ruth's at the door!
Thursday, 3 February 2011
Stormy Weather
Sometimes I feel that all I do is complain about the weather - I hated the snow as I was stuck in the house, I don't like rain as it makes my eye make up run down my face, I hate the sun as I get so burnt and I hate storms as I always think we'll have a power cut and run out of matches. Today has been rather stormy and the title song from the film 'Stormy Weather' has been stuck in my head. Unfortunately, I only know the chorus so it's been getting rather repetitive. I have stayed in the house all day which is the first time in ages. I had a rubbish sleep last night so I've not really been in the mood to do much.
We had an e-mail from the Prof yesterday saying that I'm expected for my next round of high dose on 27th February. I need to get lots of tests again but they can be arranged up here. I'm quite pleased to have an actual date for it, it feels like something to work towards and get ready for. I've been getting very frustrated having nothing to do and at least I can focus on this. Also, I'm glad it hasn't been sprung up on me last minute and we have some time to prepare. He phoned last night to see how I am and he seems to be quite happy with my progress.
The past week has been quite busy really. I've been getting very fed up so I'm trying to keep myself entertained. Last Friday it was Grace and Sarah's 'P' party, in which everyone had to come dressed up as something beginning with the letter P. We (Rona, Teenie, Alice and myself) decided to go as The Plastics from Mean Girls. I don't think many people knew who we were but we thought it was funny!
Cat and ML were Party animals and did the facepaint themselves - very impressive eh?
William was a panda... Lol.
This is a snap with the cousins who were present at the party - here we have 3 Plastics, a Peacock, a Punk and a Psycho. Lovely.
Yesterday I met Ruth and Ally for lunch at Ruth's work and it was great to have a catch up/gossip. We're a bunch of blosers. In the evening David and Olwen popped in to say 'hello' which was nice. Today I dug out a lot of piano books and tried to work my way through them. My hands are definitely a lot better than they were a few weeks ago. One thing the prof said yesterday was to expect that my hands and feet will get even worse after the next round of high dose and they could take a couple of years to heal. I don't think I had estimated it would be that long. Anyway, I attempted some pieces today. I am still struggling with scales - I tried the Scarlatti piece I played for my Grade 8 exam and found it very difficult. There are a lot of semiquaver runs and accidentals - I have forgotten most of the second half so it was just like sight reading! I used to love Regina Spektor and found some sheet music for one of my favourite songs, Raindrops. It has a beautiful melody and I love playing the piano part. Oh well blah blah blah.
Tomorrow is my cousin Rosanna's birthday ceilidh. I don't think I will be participating in any dances but I'm looking forward to it. Auntie Sheana and co are also coming down for the event so it will be great to see them. I'm also debating about which wig to wear.. Hmmm.. I think I will wear a blue dress (I know, shocking eh?) so maybe the white wig. We shall see.
I always end up writing nonsense on this so apologies to all reading. I don't generally think about what I'm writing, it kind of just spurts out... Quite like my conversation then. I'm going to go back to my book and maybe get a cup of tea - oh yes, exciting afternoon in Uddingston! I might also source some matches in case my fears of a power cut become realised...
We had an e-mail from the Prof yesterday saying that I'm expected for my next round of high dose on 27th February. I need to get lots of tests again but they can be arranged up here. I'm quite pleased to have an actual date for it, it feels like something to work towards and get ready for. I've been getting very frustrated having nothing to do and at least I can focus on this. Also, I'm glad it hasn't been sprung up on me last minute and we have some time to prepare. He phoned last night to see how I am and he seems to be quite happy with my progress.
The past week has been quite busy really. I've been getting very fed up so I'm trying to keep myself entertained. Last Friday it was Grace and Sarah's 'P' party, in which everyone had to come dressed up as something beginning with the letter P. We (Rona, Teenie, Alice and myself) decided to go as The Plastics from Mean Girls. I don't think many people knew who we were but we thought it was funny!
Cat and ML were Party animals and did the facepaint themselves - very impressive eh?
William was a panda... Lol.
This is a snap with the cousins who were present at the party - here we have 3 Plastics, a Peacock, a Punk and a Psycho. Lovely.
Yesterday I met Ruth and Ally for lunch at Ruth's work and it was great to have a catch up/gossip. We're a bunch of blosers. In the evening David and Olwen popped in to say 'hello' which was nice. Today I dug out a lot of piano books and tried to work my way through them. My hands are definitely a lot better than they were a few weeks ago. One thing the prof said yesterday was to expect that my hands and feet will get even worse after the next round of high dose and they could take a couple of years to heal. I don't think I had estimated it would be that long. Anyway, I attempted some pieces today. I am still struggling with scales - I tried the Scarlatti piece I played for my Grade 8 exam and found it very difficult. There are a lot of semiquaver runs and accidentals - I have forgotten most of the second half so it was just like sight reading! I used to love Regina Spektor and found some sheet music for one of my favourite songs, Raindrops. It has a beautiful melody and I love playing the piano part. Oh well blah blah blah.
Tomorrow is my cousin Rosanna's birthday ceilidh. I don't think I will be participating in any dances but I'm looking forward to it. Auntie Sheana and co are also coming down for the event so it will be great to see them. I'm also debating about which wig to wear.. Hmmm.. I think I will wear a blue dress (I know, shocking eh?) so maybe the white wig. We shall see.
I always end up writing nonsense on this so apologies to all reading. I don't generally think about what I'm writing, it kind of just spurts out... Quite like my conversation then. I'm going to go back to my book and maybe get a cup of tea - oh yes, exciting afternoon in Uddingston! I might also source some matches in case my fears of a power cut become realised...
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