I'm probably not in the best frames of mind to be writing this right now but saying that I do need to get some stuff of my chest so perhaps its not bad timing. I do apologise now for the negativity I am about to blurt out. I'll have my rant and then be positive again after!!
Its the weekend after my chemo and I still don't feel human. I defiantly have chemo brain, in other words my brain feels completely F*cked! This has been the worst chemo yet. Not sure if its because of it being the third (I heard people have a bad time on their third) or its because I have transferred hospitals. Funding seemed to be better down south, I did not get the same anti sickness up here and have felt worse off.
I woke up on New years eve feeling calm after dreading it the night before. Everywhere was covered in in frost. It was a beautiful landscape to drive through on the way to the hospital. It made me smile and lifted my spirits that morning. I'd been reading a book about angels that my mum bought me for Christmas. It some how made me think it was something that my angel had done just for me to remind me of their presence.
Joe had come up the day before so came with me to the hospital. There was no point anyone else coming as I wasn't really supposed to have anyone sit with me while having the chemo. Its not the nicest of places to spend new years hanging around either!
The whole chemo experience was better in Brighton, but it is on a smaller scale to Leicester and has a lot more people to deal with having the whole of Leicestershire to cover. Its a shame though as I felt more comfortable and welcome in Brighton. Even down to the receptionists making you feel special as soon as you walked in the door. The waiting room was so busy that not everyone could sit down. It was like a conveyor belt. People waiting to go and get there bodies pumped full of chemicals. My friend joked about having chemo through a drive thru... it didn't feel far off!
I arrived at 9.40, about an hour and a half later I met my new Oncologist and then waited another two hours and was finally called in. The area where you have your chemo is like a corridor with two long rows of chairs facing each other full of people with drips hanging from their arms. Not a pleasant sight I can tell you. I sat down amongst mainly old cancer patients and the process began.
First was the cold cap, a little different this time. It was simply a cap from a freezer rather then attached to a machine. The nurse placed it on my head and then tightly placed another hat over it to keep it close to my scalp. This time I did get the ice cream headache. I couldn't bare it. The hat was covering my ears which was freezing them too and was tight around the bottom of my chin near and round my neck. I felt so suffocated and wanted it off instantly. I knew that it would be worth it though and tried to bare with it. I very nearly gave up on it. I got upset sitting there on my own and started to cry. People were looking at me but no body said a word to me. You would think seeing a young girl in a room full of old cancer patients someone would want to talk to you. I text Joe asking if he could come round to me. There was no way I was sitting there all by myself. I could not handle it.
Half an hour pasted and the nurse started to inject the chemo into my line. She was surprised I had a PICC line and said I was very lucky to have one. I realised too that I was as if I'd started my treatment up here I wouldn't have got one and having a cannula stuck in your vein every time and feeling the chemo go through them would have been awful.
It didn't take long and I felt the same as I always do, a little nasally from one of the drugs. I didn't have the anti sickness injections that I had in Brighton so was a little worried I was going to suffer more this time... and I did.
The nurses all seemed nice but I wasn't too amused at them joking about having chemo brain. After all I AM suffering with it. Its bad enough what I'm going through as well as having my brain cells killed off making me feel half brain dead! Hardly amusing!
I was glad to get out. It was a freezing cold day! I got home, a hot bath was waiting for me! I got in it and relaxed. The worst bit started and the nausea kicked in. We put on the film Scrooged, a bit of Bill Murray's dry sense of humour helped pass the time. I even managed to eat my dinner. I started to feel a lot worse, to the point where I really thought I was going to be sick. I got restless like I did the time before. Feeling nauseous and not being able to get comfortable is not my idea of fun. This was defiantly worse then the previous two.
I went to bed at about 10 and tried to settle but I couldn't. I didn't care that it was new years eve. It seemed so irrelevant to me, I was bringing the new year in still with the illness so wasn't feeling all joyful for the arrival of 2009. I will feel joyful when the middle of 2009 arrives!
I kept tossing and turning and eventually got to sleep just after midnight.
The next day I still felt sick and restless. We stayed in, I knitted and watched films all day. I'm not too good at being ill and I get bored of doing the same thing. I had sat in front of the TV screen too long. I had completely lost my appetite that day too. I went to bed early and read my book.
I managed to sleep but didn't wake up feeling much better.
I took more anti sickness pills which include steroids. The steroids seem to have an adverse affect on me. The best way to describe it is feeling totally wired! I feel restless and jittery, my heads buzzing (not in a good way) and can not concentrate. I have not felt right now for the last 2 days but am not sure if taking just two steroids can do this too you for so long. I am meant to take two twice daily for three days but those two alone seemed to have done me over... or at least I think its them.
I realised that when I have my TAX chemo I have the same steroids to take, four twice a day for three days. I'll be an absolute mess if I take that many! I'm hoping I can have something else, so I need to talk to my oncologist about that.
Yesterday Joe and I went out for a lovely long walk which helped a little, but no matter what I tried to do or no matter when I started to feel slightly normal again I would seem to go back to feeling very strange. I felt happy that day but was sick of still feeling wired. I had a nice evening, yummy food and some laughs. I felt really tired and was glad hoping I was going to be in for a good nights sleep. No such luck.. I tossed and turned again for most of the night.
I woke up today feeling a little sick still. I felt fairly normal until the end of the day when I started to feel the same as the previous two days. Its weird as I have not taken anymore pills since the morning before. I can't pin point why I feel like this! I really don't like it either.
My eye sight seems to have been slightly affected too. Things far away seem a little blurred. I am not sure why this is at all. I feel like I have so much stuff going though my head I can't deal with it all. There is no way of switching it off! I would do anything to relax right now but nothing seems to be doing the trick.
I was hoping the writing this and getting it all off my chest would help. Ive tried reading, sitting in front of the TV, lying on my bed and closing my eyes... but still nothing! Its like taking a bad pill that's goes on and on for days! Its a little like when I took the anti depressant. I just don't think drugs and I mix well at all.
I felt like I could have run away today. At the moment I feel like I want to go away and forget about having cancer (I may not even have cancer that's the ridiculous thing) just for a little while, to feel free of it all. I also wanted to go out tonight too, get blitzed, feel normal and forget about everything! My mind was saying YES but my body just wasn't in agreement. I know its probably not the most sensible thing to do so soon after chemo but the last few weeks have felt like a life time!
I have plenty of time to party after all this, but I feel its important to also keep my sanity while going through this too. I just have to hang on till my immune system has had a chance to recover before I have a night out.
I am glad Christmas and New years is over. Its a weird time, bringing out the good or bad, depending on whats going on in your life. A time to reflect on the year that has passed and contemplate on what the new year has in store for you. Its a pretty crap time when things aren't so great, so I am very relieved its over.
Its a new year and a new start.. well sort of. My new year will probably begin mid year. August I can imagine most of it to be over with. I'll be turning 30 then too! Defiantly a new chapter in my life.
As for now I will get through this the best I can. I am half way through my chemo but feel like I'm still at the beginning of some more tough times to come. Losing my hair is going to be the next hurdle. There will be high and low moments and getting through the dark patches, I have to remind myself of the light that comes with it too.
Its the weekend after my chemo and I still don't feel human. I defiantly have chemo brain, in other words my brain feels completely F*cked! This has been the worst chemo yet. Not sure if its because of it being the third (I heard people have a bad time on their third) or its because I have transferred hospitals. Funding seemed to be better down south, I did not get the same anti sickness up here and have felt worse off.
I woke up on New years eve feeling calm after dreading it the night before. Everywhere was covered in in frost. It was a beautiful landscape to drive through on the way to the hospital. It made me smile and lifted my spirits that morning. I'd been reading a book about angels that my mum bought me for Christmas. It some how made me think it was something that my angel had done just for me to remind me of their presence.
Joe had come up the day before so came with me to the hospital. There was no point anyone else coming as I wasn't really supposed to have anyone sit with me while having the chemo. Its not the nicest of places to spend new years hanging around either!
The whole chemo experience was better in Brighton, but it is on a smaller scale to Leicester and has a lot more people to deal with having the whole of Leicestershire to cover. Its a shame though as I felt more comfortable and welcome in Brighton. Even down to the receptionists making you feel special as soon as you walked in the door. The waiting room was so busy that not everyone could sit down. It was like a conveyor belt. People waiting to go and get there bodies pumped full of chemicals. My friend joked about having chemo through a drive thru... it didn't feel far off!
I arrived at 9.40, about an hour and a half later I met my new Oncologist and then waited another two hours and was finally called in. The area where you have your chemo is like a corridor with two long rows of chairs facing each other full of people with drips hanging from their arms. Not a pleasant sight I can tell you. I sat down amongst mainly old cancer patients and the process began.
First was the cold cap, a little different this time. It was simply a cap from a freezer rather then attached to a machine. The nurse placed it on my head and then tightly placed another hat over it to keep it close to my scalp. This time I did get the ice cream headache. I couldn't bare it. The hat was covering my ears which was freezing them too and was tight around the bottom of my chin near and round my neck. I felt so suffocated and wanted it off instantly. I knew that it would be worth it though and tried to bare with it. I very nearly gave up on it. I got upset sitting there on my own and started to cry. People were looking at me but no body said a word to me. You would think seeing a young girl in a room full of old cancer patients someone would want to talk to you. I text Joe asking if he could come round to me. There was no way I was sitting there all by myself. I could not handle it.
Half an hour pasted and the nurse started to inject the chemo into my line. She was surprised I had a PICC line and said I was very lucky to have one. I realised too that I was as if I'd started my treatment up here I wouldn't have got one and having a cannula stuck in your vein every time and feeling the chemo go through them would have been awful.
It didn't take long and I felt the same as I always do, a little nasally from one of the drugs. I didn't have the anti sickness injections that I had in Brighton so was a little worried I was going to suffer more this time... and I did.
The nurses all seemed nice but I wasn't too amused at them joking about having chemo brain. After all I AM suffering with it. Its bad enough what I'm going through as well as having my brain cells killed off making me feel half brain dead! Hardly amusing!
I was glad to get out. It was a freezing cold day! I got home, a hot bath was waiting for me! I got in it and relaxed. The worst bit started and the nausea kicked in. We put on the film Scrooged, a bit of Bill Murray's dry sense of humour helped pass the time. I even managed to eat my dinner. I started to feel a lot worse, to the point where I really thought I was going to be sick. I got restless like I did the time before. Feeling nauseous and not being able to get comfortable is not my idea of fun. This was defiantly worse then the previous two.
I went to bed at about 10 and tried to settle but I couldn't. I didn't care that it was new years eve. It seemed so irrelevant to me, I was bringing the new year in still with the illness so wasn't feeling all joyful for the arrival of 2009. I will feel joyful when the middle of 2009 arrives!
I kept tossing and turning and eventually got to sleep just after midnight.
The next day I still felt sick and restless. We stayed in, I knitted and watched films all day. I'm not too good at being ill and I get bored of doing the same thing. I had sat in front of the TV screen too long. I had completely lost my appetite that day too. I went to bed early and read my book.
I managed to sleep but didn't wake up feeling much better.
I took more anti sickness pills which include steroids. The steroids seem to have an adverse affect on me. The best way to describe it is feeling totally wired! I feel restless and jittery, my heads buzzing (not in a good way) and can not concentrate. I have not felt right now for the last 2 days but am not sure if taking just two steroids can do this too you for so long. I am meant to take two twice daily for three days but those two alone seemed to have done me over... or at least I think its them.
I realised that when I have my TAX chemo I have the same steroids to take, four twice a day for three days. I'll be an absolute mess if I take that many! I'm hoping I can have something else, so I need to talk to my oncologist about that.
Yesterday Joe and I went out for a lovely long walk which helped a little, but no matter what I tried to do or no matter when I started to feel slightly normal again I would seem to go back to feeling very strange. I felt happy that day but was sick of still feeling wired. I had a nice evening, yummy food and some laughs. I felt really tired and was glad hoping I was going to be in for a good nights sleep. No such luck.. I tossed and turned again for most of the night.
I woke up today feeling a little sick still. I felt fairly normal until the end of the day when I started to feel the same as the previous two days. Its weird as I have not taken anymore pills since the morning before. I can't pin point why I feel like this! I really don't like it either.
My eye sight seems to have been slightly affected too. Things far away seem a little blurred. I am not sure why this is at all. I feel like I have so much stuff going though my head I can't deal with it all. There is no way of switching it off! I would do anything to relax right now but nothing seems to be doing the trick.
I was hoping the writing this and getting it all off my chest would help. Ive tried reading, sitting in front of the TV, lying on my bed and closing my eyes... but still nothing! Its like taking a bad pill that's goes on and on for days! Its a little like when I took the anti depressant. I just don't think drugs and I mix well at all.
I felt like I could have run away today. At the moment I feel like I want to go away and forget about having cancer (I may not even have cancer that's the ridiculous thing) just for a little while, to feel free of it all. I also wanted to go out tonight too, get blitzed, feel normal and forget about everything! My mind was saying YES but my body just wasn't in agreement. I know its probably not the most sensible thing to do so soon after chemo but the last few weeks have felt like a life time!
I have plenty of time to party after all this, but I feel its important to also keep my sanity while going through this too. I just have to hang on till my immune system has had a chance to recover before I have a night out.
I am glad Christmas and New years is over. Its a weird time, bringing out the good or bad, depending on whats going on in your life. A time to reflect on the year that has passed and contemplate on what the new year has in store for you. Its a pretty crap time when things aren't so great, so I am very relieved its over.
Its a new year and a new start.. well sort of. My new year will probably begin mid year. August I can imagine most of it to be over with. I'll be turning 30 then too! Defiantly a new chapter in my life.
As for now I will get through this the best I can. I am half way through my chemo but feel like I'm still at the beginning of some more tough times to come. Losing my hair is going to be the next hurdle. There will be high and low moments and getting through the dark patches, I have to remind myself of the light that comes with it too.
Comments
It's maddening how unseriously they take chemo brain. makes you want to throw people through the window (maybe the steroid's haven't worn off after all lol). It has passed for me thoughm just tired now.
Hang in there, this is the tough bit, this is the bottom... honest.
Lots of love
Angie
gary, my boyfriend who had chemo, says:
'it's definitely worse the third time. with me, i found it very difficult after the 3rd one, whereas the first two were relatively problem free. the sickness for me was caused by the body reacting to the drugs and the stomach tensing up, therefore the constant vomiting. you have my sympathies. cannabis really helped me through this..just a small hit, without tobacco, would help relax me immensely.'
anyway, that's his input. i'm thinking of you.
You are truly amazing!
Take Care my dear
Gemma x x x
x
Love you sooooooo much
Mum
xxxxxx
ps
Bet cleaning dad's Rav would take your mind off everything! (It would me!)