Number of days to go until chemo starts: 1 (Eek!!)
Current level of panic about the whole thing: a sky high 9/10
I can’t believe it, I have reached the one day to go point! There are so many things whirling around my head right now about the chemo: will they be able to find a vein ok; how long will I have to be there for; will I have an allergic reaction to the Taxol; how long will it take until the sickness kicks in; how long will it take for the other side effects to start; what other side effects will I get and to what extent; will the anti-sickness tablets they give me work successfully; when will I start to feel better; how long will it be until my hair starts falling out and I have to shave it off, and so many more!
I know it’s awful to wish your life away, but man do I wish it was next March right now and this was all over! Still, short of creating the world’s first fully functioning time machine there is nothing for it but to try and get through the next 6 months with as much of my mind and body intact as possible. I’ll try to keep you updated with how it all goes from here on in, but right now I’m off to hyperventilate in a corner somewhere!
See you all on the other side of Number 1…
Em
Thursday, 23 August 2007
Wednesday, 15 August 2007
Attack of Nerves
Number of days to go until chemo starts: 9
Current level of panic about going bald: still at about 5/10
The hospital phoned yesterday and now I’ve finally got a start date: Friday 24th August. Just 9 days away. Sh*t! It makes me feel quite sick to think of it, which is ironic really considering how sick I’m actually going to feel once it all starts!
What with my short hair and now a date, it’s all starting to sink in a bit more that it’s really going to happen. I’m feeling more prepared for it all now, and stronger about facing it, but I definitely do feel more scared about this one. I think it’s because having had one course of chemo already then I know what’s coming. Maybe that should be a good thing because I can prepare myself for it more, but I’m almost wishing I didn’t know because it’s making it harder. Also, I went to the doctor’s on Monday for a new sick note, and got signed off for an initial period of 6 months. 6 months!! When I walked out holding the note in my hand that’s when it really sank in just how long this is going to take my life over for again. It’s not like it’s a few weeks and it’s all over, it’s almost a year that it will consume. That in itself is almost more terrifying than the actual treatments.
By the time this lot of chemo is over I will have been ill for nearly 3 years. I just can’t comprehend it. I feel like I’m living in some sort of time warp, and it’s really odd to watch everyone else’s lives move on when I still feeling like I should only be in my mid 20s! I really don’t know where the time has gone. The last 2 years have been a blur of waiting rooms, appointments, tests and treatments. It’s got to the stage where the hospital is scarily starting to feel like my second home!
Still, I’m just concentrating on the old line, the sooner it starts the sooner it’s all over. That’s very true, but in all honesty not massively comforting at the moment. I don’t feel like it’s soon going to be over! It’s terrifying too to think that there’s a chance the chemo might not work and the cancer might come back again. I know no-one wants to think about that fact, including me, but it has to be said. Of course I would still have options if it did come back, but it would mean devastating surgery to give me a full hysterectomy. You know if I have to think about the most frightening thing in all of this then it is probably that - that I could go through all of this and end up infertile. The thought of a life with no children of my own is so painful that in all honesty I try hard not to think about it.
That is considering the worst though, which, although a possibility, is not something that I either want to think about, or that I think is very helpful to think about. From experience I know the only way to get through chemo is to put your head up and pour all your energy into getting well rather than thinking about worse case senarios. So, that’s what I’m going to do. I’m going to get tough and start thinking about glamorous locations for a relaxing tropical holiday once all this is over instead!
Em
Current level of panic about going bald: still at about 5/10
The hospital phoned yesterday and now I’ve finally got a start date: Friday 24th August. Just 9 days away. Sh*t! It makes me feel quite sick to think of it, which is ironic really considering how sick I’m actually going to feel once it all starts!
What with my short hair and now a date, it’s all starting to sink in a bit more that it’s really going to happen. I’m feeling more prepared for it all now, and stronger about facing it, but I definitely do feel more scared about this one. I think it’s because having had one course of chemo already then I know what’s coming. Maybe that should be a good thing because I can prepare myself for it more, but I’m almost wishing I didn’t know because it’s making it harder. Also, I went to the doctor’s on Monday for a new sick note, and got signed off for an initial period of 6 months. 6 months!! When I walked out holding the note in my hand that’s when it really sank in just how long this is going to take my life over for again. It’s not like it’s a few weeks and it’s all over, it’s almost a year that it will consume. That in itself is almost more terrifying than the actual treatments.
By the time this lot of chemo is over I will have been ill for nearly 3 years. I just can’t comprehend it. I feel like I’m living in some sort of time warp, and it’s really odd to watch everyone else’s lives move on when I still feeling like I should only be in my mid 20s! I really don’t know where the time has gone. The last 2 years have been a blur of waiting rooms, appointments, tests and treatments. It’s got to the stage where the hospital is scarily starting to feel like my second home!
Still, I’m just concentrating on the old line, the sooner it starts the sooner it’s all over. That’s very true, but in all honesty not massively comforting at the moment. I don’t feel like it’s soon going to be over! It’s terrifying too to think that there’s a chance the chemo might not work and the cancer might come back again. I know no-one wants to think about that fact, including me, but it has to be said. Of course I would still have options if it did come back, but it would mean devastating surgery to give me a full hysterectomy. You know if I have to think about the most frightening thing in all of this then it is probably that - that I could go through all of this and end up infertile. The thought of a life with no children of my own is so painful that in all honesty I try hard not to think about it.
That is considering the worst though, which, although a possibility, is not something that I either want to think about, or that I think is very helpful to think about. From experience I know the only way to get through chemo is to put your head up and pour all your energy into getting well rather than thinking about worse case senarios. So, that’s what I’m going to do. I’m going to get tough and start thinking about glamorous locations for a relaxing tropical holiday once all this is over instead!
Em
Wednesday, 8 August 2007
The Effects
Number of days to go until chemo starts: still unknown
Current level of panic about going bald: subsided to 5/10
You may have noticed that my fear of becoming a slap-head is starting to reduce, and it’s all due to my new barnet! I pre-empted being told I had to have chemo by making a hair appointment early last week for this week. I figured if I found out I didn’t need chemo then I could do with a trim anyway, and if I did then I’d get it all cut off, which is exactly what I did. For the very observant of you, you will have spotted the new do on my profile pic…
While I was sitting in the chair on Monday watching large amounts of hair fall past my ears I kept telling myself that even if it looked awful it wouldn’t matter - I’ll probably only have it for about 6 weeks anyway! Having it cut has definitely had the desired effect though. I thought that if I started to reduce the amount of hair I’ve got in stages, then when I have to clipper it all off, and then finally lose it altogether, it might not be quite so traumatic. The psychology definitely seems to be working. Now when I look in the mirror I can already see myself with a shaved head. Can’t say I can picture myself bald quite yet, but I’m definitely getting there.
I also bought my first hat on Monday so I’m feeling much more prepared all round for that aspect of the chemo. There are lots of other side effects the drugs will cause that I can’t prepare for though:
Carboplatin and Taxol:
Lowered resistance to infection
Bruising or bleeding
Anaemia
Nausea and vomiting
Loss of appetite
Tiredness and feeling weak
Numbness or tingling in hands or feet
Changes in hearing
Diarrhoea
Sore mouth and ulcers
Taste changes
Kidney function temporarily affected
Infertility
Taxol:
Hair loss
Aching or pain in joints and muscles
Low blood pressure
Changes in heart rate
Skin changes
Liver function temporarily affected
Abdominal pain
Headaches
Allergic reaction
Pretty extensive isn’t it?! Of course I won’t necessarily experience all of those - some people experience a few, some a lot, and everyone has them to varying extents. Still, it’s a daunting prospect, particularly as I had most of the side effects associated with Carboplatin last time.
You may remember from my last entry that my chemotherapy this time will be what they call combination chemotherapy, which is where they use two drugs together. In my case they will be using Carboplatin and Paclitaxel (commonly called Taxol). The first time around I had Carboplatin on its own, but because that didn’t work and keep the cancer away, then this time they are adding in Taxol too. Unfortunately, as you can see, it’s Taxol that carries all the worst side effects, and is what will cause the hair loss. Not only does it cause all the same side effects as Carboplatin, but it also has a whole nasty extra list of its own!
The other major concern is that combination therapy is more likely to cause infertility, and Taxol can be far more damaging to fertility than Carboplatin, which scares me more than anything else. Still, I think that’s a whole other entry…
Em
Current level of panic about going bald: subsided to 5/10
You may have noticed that my fear of becoming a slap-head is starting to reduce, and it’s all due to my new barnet! I pre-empted being told I had to have chemo by making a hair appointment early last week for this week. I figured if I found out I didn’t need chemo then I could do with a trim anyway, and if I did then I’d get it all cut off, which is exactly what I did. For the very observant of you, you will have spotted the new do on my profile pic…
While I was sitting in the chair on Monday watching large amounts of hair fall past my ears I kept telling myself that even if it looked awful it wouldn’t matter - I’ll probably only have it for about 6 weeks anyway! Having it cut has definitely had the desired effect though. I thought that if I started to reduce the amount of hair I’ve got in stages, then when I have to clipper it all off, and then finally lose it altogether, it might not be quite so traumatic. The psychology definitely seems to be working. Now when I look in the mirror I can already see myself with a shaved head. Can’t say I can picture myself bald quite yet, but I’m definitely getting there.
I also bought my first hat on Monday so I’m feeling much more prepared all round for that aspect of the chemo. There are lots of other side effects the drugs will cause that I can’t prepare for though:
Carboplatin and Taxol:
Lowered resistance to infection
Bruising or bleeding
Anaemia
Nausea and vomiting
Loss of appetite
Tiredness and feeling weak
Numbness or tingling in hands or feet
Changes in hearing
Diarrhoea
Sore mouth and ulcers
Taste changes
Kidney function temporarily affected
Infertility
Taxol:
Hair loss
Aching or pain in joints and muscles
Low blood pressure
Changes in heart rate
Skin changes
Liver function temporarily affected
Abdominal pain
Headaches
Allergic reaction
Pretty extensive isn’t it?! Of course I won’t necessarily experience all of those - some people experience a few, some a lot, and everyone has them to varying extents. Still, it’s a daunting prospect, particularly as I had most of the side effects associated with Carboplatin last time.
You may remember from my last entry that my chemotherapy this time will be what they call combination chemotherapy, which is where they use two drugs together. In my case they will be using Carboplatin and Paclitaxel (commonly called Taxol). The first time around I had Carboplatin on its own, but because that didn’t work and keep the cancer away, then this time they are adding in Taxol too. Unfortunately, as you can see, it’s Taxol that carries all the worst side effects, and is what will cause the hair loss. Not only does it cause all the same side effects as Carboplatin, but it also has a whole nasty extra list of its own!
The other major concern is that combination therapy is more likely to cause infertility, and Taxol can be far more damaging to fertility than Carboplatin, which scares me more than anything else. Still, I think that’s a whole other entry…
Em
Saturday, 4 August 2007
The Prologue
Number of days to go until chemo starts: unknown
Current level of panic about going bald: 7/10
When I started to get ill for a second time a couple of months ago I thought that if I ended up having to have chemo again then I would try and write a blog. I reckon it will be a good way of letting you all know, and help you understand, what the process is like, as well as all the ups and downs that go along with it. Especially as chemo makes you feel so ropey you become quite a hermit, so I might not be seeing quite a lot of you in person for many months! Well, potentially into 2008 I suppose - God that’s a depressing thought! Plus, I’m pretty rubbish at being honest about how ill I feel, and how I feel about everything that’s going on when I speak to people, so maybe writing about it will be easier and make me be more truthful! Anyway, I found out yesterday afternoon that I’ve definitely got to have chemo again, so it’s time to crank this blog into action....
Most of you know how this has all come about, but seeing as this is my first update/entry/posting (what do you call it?) then I guess it’s best to start at the beginning really:
The shortened version is that I got officially diagnosed with stage 1 ovarian cancer at the start of February 2006. I should have been shocked by the diagnosis, but by that point I’d had 2 major operations, first to remove an ovarian cyst, and then to remove a recurrent cyst and my right ovary, so in all honesty I’d been expecting it to happen. I always thought that something pretty bad was going on in my body, and unfortunately I was right (which, being a woman, I always am!)
Still, a diagnosis like that is never easy to hear. Justin found it pretty hard when I was first told, but I had the completely opposite reaction. I didn’t have any emotion towards it except absolute determination to get through whatever was coming next - it’s weird how you have no control over how you react to something like that, your body and mind just take over. Anyway, what came next turned out to be a course of chemotherapy (with a course of IVF treatment thrown in first for good measure!)
Just to explain chemotherapy a little bit, a course of chemo is usually (and was in my case) made up of 6 cycles or treatments, each 3 weeks apart. However, the length your treatments are apart is dependant on your blood cell counts - if they are too low then you have to wait for them to recover before you can have the next one. So, a course of chemo normally takes 5-6 months. Mine took 5 & 1/2 after delays for low cell counts, a blood transfusion, oh yes, and getting married! (Last but most certainly not least!)
So, after all that, in November last year I got the (semi) all clear, and things were going well until we came back off honeymoon in the middle of May. Then I found out that a lump had come back, and ended up having to have more surgery to remove it 4 weeks ago, which I know you all know about. Then yesterday, like I said at the start, I was told in my hospital appointment that I need to have more chemo to ensure the cancer has all gone.
I’d already figured they were going to tell me that, but I was still gutted to hear them say it! I think this course of chemo seems so hard to contemplate for several reasons: a) it’s following on so closely on from my last course which I’m still feeling tired from, b) they’re going to be using a combination of two drugs, one of which is pretty evil and will have very severe side affects like total hair loss, and so will be pretty hard to take, and c) it’s bloomin chemo! I must admit to feeling quite washed out at the thought of going through it all again though. The first time around I felt so determined to get through it, I just gritted my teeth and got on with it. But this time I feel like I need to summon some energy reserves, and I’m not quite sure where from at the moment. I know once I get a start date and something concrete to aim for then I’ll be ok, but until then I’m just floundering a little bit.
Anyway, I think I’ve probably waffled on long enough for a first entry (the more I think about it the more I’m sure that’s the right technical term) I know there’s lots more things to explain etc, but chemo won’t start for another week or two so there’s plenty more time to write all that.
Em
PS. Feel free to add comment and/or questions to all of my entries - if you want to know how something works etc then just let me know, I want to be able to explain all of this as clearly as possible!
Current level of panic about going bald: 7/10
When I started to get ill for a second time a couple of months ago I thought that if I ended up having to have chemo again then I would try and write a blog. I reckon it will be a good way of letting you all know, and help you understand, what the process is like, as well as all the ups and downs that go along with it. Especially as chemo makes you feel so ropey you become quite a hermit, so I might not be seeing quite a lot of you in person for many months! Well, potentially into 2008 I suppose - God that’s a depressing thought! Plus, I’m pretty rubbish at being honest about how ill I feel, and how I feel about everything that’s going on when I speak to people, so maybe writing about it will be easier and make me be more truthful! Anyway, I found out yesterday afternoon that I’ve definitely got to have chemo again, so it’s time to crank this blog into action....
Most of you know how this has all come about, but seeing as this is my first update/entry/posting (what do you call it?) then I guess it’s best to start at the beginning really:
The shortened version is that I got officially diagnosed with stage 1 ovarian cancer at the start of February 2006. I should have been shocked by the diagnosis, but by that point I’d had 2 major operations, first to remove an ovarian cyst, and then to remove a recurrent cyst and my right ovary, so in all honesty I’d been expecting it to happen. I always thought that something pretty bad was going on in my body, and unfortunately I was right (which, being a woman, I always am!)
Still, a diagnosis like that is never easy to hear. Justin found it pretty hard when I was first told, but I had the completely opposite reaction. I didn’t have any emotion towards it except absolute determination to get through whatever was coming next - it’s weird how you have no control over how you react to something like that, your body and mind just take over. Anyway, what came next turned out to be a course of chemotherapy (with a course of IVF treatment thrown in first for good measure!)
Just to explain chemotherapy a little bit, a course of chemo is usually (and was in my case) made up of 6 cycles or treatments, each 3 weeks apart. However, the length your treatments are apart is dependant on your blood cell counts - if they are too low then you have to wait for them to recover before you can have the next one. So, a course of chemo normally takes 5-6 months. Mine took 5 & 1/2 after delays for low cell counts, a blood transfusion, oh yes, and getting married! (Last but most certainly not least!)
So, after all that, in November last year I got the (semi) all clear, and things were going well until we came back off honeymoon in the middle of May. Then I found out that a lump had come back, and ended up having to have more surgery to remove it 4 weeks ago, which I know you all know about. Then yesterday, like I said at the start, I was told in my hospital appointment that I need to have more chemo to ensure the cancer has all gone.
I’d already figured they were going to tell me that, but I was still gutted to hear them say it! I think this course of chemo seems so hard to contemplate for several reasons: a) it’s following on so closely on from my last course which I’m still feeling tired from, b) they’re going to be using a combination of two drugs, one of which is pretty evil and will have very severe side affects like total hair loss, and so will be pretty hard to take, and c) it’s bloomin chemo! I must admit to feeling quite washed out at the thought of going through it all again though. The first time around I felt so determined to get through it, I just gritted my teeth and got on with it. But this time I feel like I need to summon some energy reserves, and I’m not quite sure where from at the moment. I know once I get a start date and something concrete to aim for then I’ll be ok, but until then I’m just floundering a little bit.
Anyway, I think I’ve probably waffled on long enough for a first entry (the more I think about it the more I’m sure that’s the right technical term) I know there’s lots more things to explain etc, but chemo won’t start for another week or two so there’s plenty more time to write all that.
Em
PS. Feel free to add comment and/or questions to all of my entries - if you want to know how something works etc then just let me know, I want to be able to explain all of this as clearly as possible!
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