Sunday, 25 December 2011
Merry Christmas
... to everyone. I hope you are with the ones you love and that you have a lovely day xxxx
Sunday, 18 December 2011
It just gets better
I'm still reeling from the somewhat shocking, but quite frankly, fucking fabulous news that at the moment I have kicked the evilness into touch. I have had a celebratory glass of fizzy pop which went straight to my head due to me not having drunk a drop since the evilness came back. Brilliant.
Anyway, on Thursday I got a text message from one of my bestest friends, who lives in New Zealand. She has unfortunately also been battling with the evilness for the last 4 years. She has had multiple surgeries and has just finished 6 months of chemo. Ironic that we were both enduring the kick-ass drugs on opposite sides of the world. But if looking for the silver lining, at least we could support each other, and our partners also had someone to compare notes with.
Anyway, I digress. Her text was to tell me the bloody brilliant news that her latest MRI scan was clear. She too has told the evilness to piss off. I am absolutely over the moon. It has been a dreadful year for us both and it is just wonderful that we have both gone into remission at the same time. We can see in 2012 in a much better way now and kiss 2011 goodbye.
Truly the best Christmas present ever. Love you and miss you loads S xxxx
Anyway, on Thursday I got a text message from one of my bestest friends, who lives in New Zealand. She has unfortunately also been battling with the evilness for the last 4 years. She has had multiple surgeries and has just finished 6 months of chemo. Ironic that we were both enduring the kick-ass drugs on opposite sides of the world. But if looking for the silver lining, at least we could support each other, and our partners also had someone to compare notes with.
Anyway, I digress. Her text was to tell me the bloody brilliant news that her latest MRI scan was clear. She too has told the evilness to piss off. I am absolutely over the moon. It has been a dreadful year for us both and it is just wonderful that we have both gone into remission at the same time. We can see in 2012 in a much better way now and kiss 2011 goodbye.
Truly the best Christmas present ever. Love you and miss you loads S xxxx
 |
| Haagen-Dazs, Leicester Square - just like old times |
Wednesday, 7 December 2011
Holy crap!
OH. MY. GOD. I am in shock.
So evilness Dr starts the appointment with lots of "How have you been?" niceness. Part of me wanted to carry on the chit chat to ward off the inevitable. But the other part just thought GET ON WITH IT!
Anyway my PET/CT scan was completely clear. The SOMETHING in my liver is metabolically inactive which makes it much less likely to be evilness. So 6 weeks ago I was told I have liver cancer and now it seems that is not the case. FUCK. They think it may be a fatty growth. Fine by me!
And as for the sneaky tumour in my pelvis that was left behind after my last op, and that doesn't show up on a normal CT scans, is also not there either. So at the moment I am cancer free.
SHIT
I am stunned. I was fully prepared for the badest news and I get this. SHIT.
So no more horrid drugs for now and then an MRI in february and an ultrasound which can differentiate fat from nastiness. And then we see. But the good thing is that the kick ass drugs were actually kicking ass so we can use them again if it comes back.
I haven't felt like celebrating Christmas because of these results. And now we have had this amazing news. It is still really hard though because of my wonderful father in law. We found out last week that he now has evilness in his spine and so started radiotherapy today. I know how hard it is hearing that someone else has had great news whilst you are battling with shit. You are thrilled for them but insanely jealous. Man this disease is an evil bastard.
But for now i am going to just think about the fact that I have kicked it's arse for the second time. So there.
So evilness Dr starts the appointment with lots of "How have you been?" niceness. Part of me wanted to carry on the chit chat to ward off the inevitable. But the other part just thought GET ON WITH IT!
Anyway my PET/CT scan was completely clear. The SOMETHING in my liver is metabolically inactive which makes it much less likely to be evilness. So 6 weeks ago I was told I have liver cancer and now it seems that is not the case. FUCK. They think it may be a fatty growth. Fine by me!
And as for the sneaky tumour in my pelvis that was left behind after my last op, and that doesn't show up on a normal CT scans, is also not there either. So at the moment I am cancer free.
SHIT
I am stunned. I was fully prepared for the badest news and I get this. SHIT.
So no more horrid drugs for now and then an MRI in february and an ultrasound which can differentiate fat from nastiness. And then we see. But the good thing is that the kick ass drugs were actually kicking ass so we can use them again if it comes back.
I haven't felt like celebrating Christmas because of these results. And now we have had this amazing news. It is still really hard though because of my wonderful father in law. We found out last week that he now has evilness in his spine and so started radiotherapy today. I know how hard it is hearing that someone else has had great news whilst you are battling with shit. You are thrilled for them but insanely jealous. Man this disease is an evil bastard.
But for now i am going to just think about the fact that I have kicked it's arse for the second time. So there.
D-Day
So - today is the day. Results. The day where I stop being in limbo and find out what the next step is. The day where I find out how totally crap my life may be.
It's really hard to stay positive but I have to try.
Appointment isn't until 6.30pm so long day ahead. Sigh.
It's really hard to stay positive but I have to try.
Appointment isn't until 6.30pm so long day ahead. Sigh.
Wednesday, 16 November 2011
Chuckle
I'm still giggling.
I saw my marble polisher today and we got on to the subject of a certain so-called friend who has hurt me more than anyone in my life ever has (and hopefully ever will).
Marble polisher referred to her as The Dark Side but said that at least Darth Vader redeemed himself towards the end, but she never will.
So true. But it really made me chuckle.
The Dark Side.
Brilliant.
I saw my marble polisher today and we got on to the subject of a certain so-called friend who has hurt me more than anyone in my life ever has (and hopefully ever will).
Marble polisher referred to her as The Dark Side but said that at least Darth Vader redeemed himself towards the end, but she never will.
So true. But it really made me chuckle.
The Dark Side.
Brilliant.
Monday, 7 November 2011
The Drugs Don't Work
Just when you get your head around the new plan, it all changes. Aaahhhh.
So I saw evilness Dr last week and got the wonderful news that my liver wants in on the action. Was told to book another appointment for a week later just to make sure I was feeling better as I had been in bed all week. However he said if I was feeling ok then cancel it.
Well, I was feeling better but thought would keep the appointment anyway as we had some questions. In all the liver drama we forgot to ask what the plan was with the sneaky invisible tumour that's in my pelvis.
Anyway turns out the evilness Dr is off that but it's ok as we can see my other one - I'm greedy and have two! So he shows me the scan and I can see the liver badness - sitting right in the middle of my liver next to a massive blood vessel. Great. I mean, why couldn't it just be sat on the edge there, easy to snip off? Oh no, not me, has to be difficult.
So since I last saw evilness Dr, they have had a chat and come up with another plan. Quite when I was going to be let in on this is beyond me, as I could have cancelled the appointment! Anyway - they have decided to stop chemo. Yes, you heard me, stop chemo. Just like that. No more. Now weirdly, if you had told me that I was stopping chemo I would be bouncing off the walls. No more feeling shite. However that was actually the last thing I felt. I think because the reality is that they are stopping the kickass drugs as they might not be quite as kick ass as we thought. A tumour shouldn't grow when on the drugs. So no more chemo for now and then at the end of the month I will have a PET-CT scan to look for more evilness. If it is just in my liver then the surgeons get to have fun and chop it out. If there is other stuff elsewhere then I guess, more chemo. Who knows. It's just a bit scary knowing the evilness is inside me and we are taking away the drugs that might be keeping it at least under some sort of control.
However, I can't focus on that. I can focus on the fact that at least for the next few weeks there are no kick ass, make you feel like shite drugs in my system, and so Claire may be back for a while. I will deal with the scan and the results on December 7th and not before then!
So it's all a bit mind boggling eh? Just get your head around one plan and it's all change. It is all a bit crap really but what can I do? I just have to get on with it. I knew it was likely to pop up in my liver at some point, but didn't expect it just yet. I've been fighting the fight for over 2 years now and it's hard. Hard that every day my mortality is in my face. I mean, really, who at the age of 37 should be wondering what songs to have at their funeral? It's just so wrong but that is the reality of my life. All our hopes and dreams have gone and my only hope is to survive. To make my 40th birthday. How crazy is that? It certainly gives you a different perspective on life but also makes you insanely jealous of everyone else that takes life for granted. My life is on hold right now until December 7th. I can't make any plans as I don't know what they will tell me. Who knows what is next? All I can do in the meantime is enjoy being Claire and enjoy not having the FFH! Bizarrely I have new hair growing so I have a weird fuzzy halo! The things I have to contend with eh?!
So I saw evilness Dr last week and got the wonderful news that my liver wants in on the action. Was told to book another appointment for a week later just to make sure I was feeling better as I had been in bed all week. However he said if I was feeling ok then cancel it.
Well, I was feeling better but thought would keep the appointment anyway as we had some questions. In all the liver drama we forgot to ask what the plan was with the sneaky invisible tumour that's in my pelvis.
Anyway turns out the evilness Dr is off that but it's ok as we can see my other one - I'm greedy and have two! So he shows me the scan and I can see the liver badness - sitting right in the middle of my liver next to a massive blood vessel. Great. I mean, why couldn't it just be sat on the edge there, easy to snip off? Oh no, not me, has to be difficult.
So since I last saw evilness Dr, they have had a chat and come up with another plan. Quite when I was going to be let in on this is beyond me, as I could have cancelled the appointment! Anyway - they have decided to stop chemo. Yes, you heard me, stop chemo. Just like that. No more. Now weirdly, if you had told me that I was stopping chemo I would be bouncing off the walls. No more feeling shite. However that was actually the last thing I felt. I think because the reality is that they are stopping the kickass drugs as they might not be quite as kick ass as we thought. A tumour shouldn't grow when on the drugs. So no more chemo for now and then at the end of the month I will have a PET-CT scan to look for more evilness. If it is just in my liver then the surgeons get to have fun and chop it out. If there is other stuff elsewhere then I guess, more chemo. Who knows. It's just a bit scary knowing the evilness is inside me and we are taking away the drugs that might be keeping it at least under some sort of control.
However, I can't focus on that. I can focus on the fact that at least for the next few weeks there are no kick ass, make you feel like shite drugs in my system, and so Claire may be back for a while. I will deal with the scan and the results on December 7th and not before then!
So it's all a bit mind boggling eh? Just get your head around one plan and it's all change. It is all a bit crap really but what can I do? I just have to get on with it. I knew it was likely to pop up in my liver at some point, but didn't expect it just yet. I've been fighting the fight for over 2 years now and it's hard. Hard that every day my mortality is in my face. I mean, really, who at the age of 37 should be wondering what songs to have at their funeral? It's just so wrong but that is the reality of my life. All our hopes and dreams have gone and my only hope is to survive. To make my 40th birthday. How crazy is that? It certainly gives you a different perspective on life but also makes you insanely jealous of everyone else that takes life for granted. My life is on hold right now until December 7th. I can't make any plans as I don't know what they will tell me. Who knows what is next? All I can do in the meantime is enjoy being Claire and enjoy not having the FFH! Bizarrely I have new hair growing so I have a weird fuzzy halo! The things I have to contend with eh?!
Thursday, 27 October 2011
Something
There are times when I struggle to stay strong in the fight and this is one of them. There are times when I need a break; to be cut some slack; some good news. It's not too much to ask is it? Well apparently it is.
So I had a routine CT scan on Monday. Pretty crap when they say to you - "you've done this before haven't you?". Yup, 6 scans later I'm familiar with the process. But no-one should have to be an expert in CT scan cancer monitoring.
Anyway, since then I've been in bed feeling shite. It's the first time in all my chemo that I've felt this bad. However the evilness dr thinks I'm just dehydrated so need to drink more. Tricky when you're asleep but hey ho.
So got the CT results last night. All clear HURRAH.
Oh apart from the something on my liver.
Something.
Which when pushed means the fucking evilness has spread to my liver despite the kick-ass drugs. Not good. Fuck, fuck, fuck.
So I am being referred to the liver team at Hammersmith. Joy. We went there for the IVF stuff and it's not the most pleasant place - I mean next to a prison! Anyway, they are going to have a meeting to discuss me and decide what to do. The most likely thing is surgery to remove it and then who knows. It is not great that the evilness is winning the war and there is only one last chemo drug left to try. And it may not be an option anyway as some tumours mutate so the drug is ineffectual. They have tested my tumour but can't find the results. Bloody brilliant. Let's hope they find them.
So that is me. Facing more surgery and a very uncertain future. In fact it feels right now that I don't have a future. It's all a bit dark. I have lots of love and support from amazing people that believe I can beat this. However the reality is that the 5 year survival rate for recurrent bowel cancer is 5%. Pretty shit eh? Hard to stay positive knowing that and given my current situation. Obviously I will just carry on fighting but at dark times like this it's hard to see what the point is. Feeling crappy most of the time for what? I hate the fact that I have to fight to stay alive - something most people just take for granted. No, not for me. It's a massive uphill battle. Why can't things be simple?
Sigh
So I had a routine CT scan on Monday. Pretty crap when they say to you - "you've done this before haven't you?". Yup, 6 scans later I'm familiar with the process. But no-one should have to be an expert in CT scan cancer monitoring.
Anyway, since then I've been in bed feeling shite. It's the first time in all my chemo that I've felt this bad. However the evilness dr thinks I'm just dehydrated so need to drink more. Tricky when you're asleep but hey ho.
So got the CT results last night. All clear HURRAH.
Oh apart from the something on my liver.
Something.
Which when pushed means the fucking evilness has spread to my liver despite the kick-ass drugs. Not good. Fuck, fuck, fuck.
So I am being referred to the liver team at Hammersmith. Joy. We went there for the IVF stuff and it's not the most pleasant place - I mean next to a prison! Anyway, they are going to have a meeting to discuss me and decide what to do. The most likely thing is surgery to remove it and then who knows. It is not great that the evilness is winning the war and there is only one last chemo drug left to try. And it may not be an option anyway as some tumours mutate so the drug is ineffectual. They have tested my tumour but can't find the results. Bloody brilliant. Let's hope they find them.
So that is me. Facing more surgery and a very uncertain future. In fact it feels right now that I don't have a future. It's all a bit dark. I have lots of love and support from amazing people that believe I can beat this. However the reality is that the 5 year survival rate for recurrent bowel cancer is 5%. Pretty shit eh? Hard to stay positive knowing that and given my current situation. Obviously I will just carry on fighting but at dark times like this it's hard to see what the point is. Feeling crappy most of the time for what? I hate the fact that I have to fight to stay alive - something most people just take for granted. No, not for me. It's a massive uphill battle. Why can't things be simple?
Sigh
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