I am relaxed, eating too much and trying to ignore the evilness. This holiday is well overdue, well needed and providing some respite for the soul. For both of us.
Thursday, 18 October 2012
This is the life
Just a quick hello from The Land of the Pasty. I am currently sitting on a very squishy sofa with sun streaming through the windows overlooking the beautiful beach of Watergate Bay.
I am relaxed, eating too much and trying to ignore the evilness. This holiday is well overdue, well needed and providing some respite for the soul. For both of us.
I love it here. I may never leave.
I am relaxed, eating too much and trying to ignore the evilness. This holiday is well overdue, well needed and providing some respite for the soul. For both of us.
Wednesday, 10 October 2012
4 sleeps
.........until we go to the Land of the Pasty for 2 weeks and I can't wait.
It seems a bit daft to need a holiday after having 3 months off work but it's been what can only be described, quite frankly, as a shitty three months. We haven't had a holiday since January so are in desperate need. And it's been FAR too long since we visited our spiritual home.
My mind, body and soul can't wait.
It seems a bit daft to need a holiday after having 3 months off work but it's been what can only be described, quite frankly, as a shitty three months. We haven't had a holiday since January so are in desperate need. And it's been FAR too long since we visited our spiritual home.
My mind, body and soul can't wait.
Monday, 8 October 2012
Freedom
10 days. The longest that I have been out of hospital since July. How crazy is that?
I was finally released last saturday evening after a final stress of making sure my temperature was normal all day. Also on the understanding that I have to keep a temperature chart as if an infection was going to raise its ugly head, it would happen now that the antibiotics have finished. So twice daily I have to check that I'm not burning up again - remembering to not do it straight after a cuppa! And without wishing to tempt fate, so far so good.
My lovely cardiothoracic medic warned me that being home would be much harder than I anticipated. I have essentially existed in one room for the last 12 weeks so living in a house is a big deal. And man he wasn't wrong. Bit of a shock to the system to have to make a cup of tea! I am used to asking some lovely person to sort all my needs. However - I am managing and being a good patient and not doing "too much" - whatever that means!
Today I have taken that to the letter and have spent the day in my PJs on the sofa, under the Quilt of Love! I could get used to this!
I was finally released last saturday evening after a final stress of making sure my temperature was normal all day. Also on the understanding that I have to keep a temperature chart as if an infection was going to raise its ugly head, it would happen now that the antibiotics have finished. So twice daily I have to check that I'm not burning up again - remembering to not do it straight after a cuppa! And without wishing to tempt fate, so far so good.
My lovely cardiothoracic medic warned me that being home would be much harder than I anticipated. I have essentially existed in one room for the last 12 weeks so living in a house is a big deal. And man he wasn't wrong. Bit of a shock to the system to have to make a cup of tea! I am used to asking some lovely person to sort all my needs. However - I am managing and being a good patient and not doing "too much" - whatever that means!
Today I have taken that to the letter and have spent the day in my PJs on the sofa, under the Quilt of Love! I could get used to this!
 |
| Super soft PJs and UGG slippers from Oz - chosen by my lovely brother |
Tuesday, 18 September 2012
You couldn't make it up!
Well the good news is that the 5 weeks of radiotherapy is done and has actually gone quite well. All the pain has gone and I no longer look like I ate all the pies! The most recent CT shows the tumour resembling swiss cheese! Weirdly the frying of the evilness continues for another couple of months after finishing actual treatment so we can't judge the full effect. Everyone has been pleased with how I've done - even my skin hasn't suffered too badly. I just have a perfect square peeling sunburn on my bum! Very glamorous. The facilities are amazing and treatment each day only took about 15 minutes.
And the incarceration hasn't been too bad actually. It's amazing how many people pass through London or visit London, so I have been really lucky to have had loads of visitors - some old friends that I haven't seen in many years too. Weird how there are some good things to come out of the evilness. My amazing work colleagues got me some vouchers for here so I could have some pampering whilst in hospital. It was such a lovely thought and very much appreciated.
So I have actually been quite busy hence being rubbish at blogging!
Now it all seems rather positive doesn't it? Well, those of you that know me, may know that I tend not to expect good news, and this time is no different! About 3 weeks into evilness frying, I started to spike temperatures. After many blood cultures, bodily fluid samples and tests, it was eventually discovered that I had Endocardititis. A big lump of yuk inside my heart. Arse. I mean seriously, you couldn't make this up. So 2 more consultants to add to my collection - heart surgeon and heart medic. Onto a shed load of iv antibiotics to try and get this thing to bugger off - all the while being warned that it could break off and travel to my lungs. This would be a very bad thing.
Much head scratching and phone calling and general discussion resulted in the antibiotics not really working and the lump staying the same which meant that the nice surgeon that I met (just in case, but you won't need me) got to step up.
So I had my final frying on monday and then tuesday dawn was transferred to another hospital in london - The Wellington. This was necessary as they have bypass there - holy crap as I soon realised that we were talking MAJOR surgery here. Cracking my chest and bypass etc - the stuff of ER and Holby City. Just what is recommended after 5 weeks of radiotherapy when your body is in tip top form!
It must be said, the goodbye at the theatre door when you are heading into a thoracotomy is terrifying. I am not scared of operations etc but this was one time when the thought was there that I may not wake up. Fuck.
But wake up I did and for once I had GOOD NEWS. There had been musings that maybe this lump of yuk was actually a little gang of yuk and evilness. It's always there in my mind so I wasn't exactly surprised when the seed was sown.
But NO. For once the evilness didn't get to join in the fun and it was just yuk. O.M.G. and all other such shock related type exclamations. After all the shite I finally get a little bit of good news. I know that endocardititis is a big deal and I need 2 more weeks of iv antibiotics but evilness of the heart would have been very bad indeed. Very bad.
And in the midst of all of this madness my amazing internet weirdies have been there every step of the way. Not content with gorgeous flowers, and yummy cupcakes, they blew me away with a hamper of home made goodies and really thoughtful gifts. There was a Cath Kidston explosion and a beautiful necklace from Tiffany. I was stunned. It is truly incredible that people that are to a degree, strangers, can do such an incredibly thoughtful thing. I am so blessed and honoured to be part of the community. Thank you never seems enough.
 |
| Not very comfortable at all! |
 |
| The radiotherapy room |
 |
| Being lined up and positioned |
 |
| My View lying on the table |
And the incarceration hasn't been too bad actually. It's amazing how many people pass through London or visit London, so I have been really lucky to have had loads of visitors - some old friends that I haven't seen in many years too. Weird how there are some good things to come out of the evilness. My amazing work colleagues got me some vouchers for here so I could have some pampering whilst in hospital. It was such a lovely thought and very much appreciated.
So I have actually been quite busy hence being rubbish at blogging!
Now it all seems rather positive doesn't it? Well, those of you that know me, may know that I tend not to expect good news, and this time is no different! About 3 weeks into evilness frying, I started to spike temperatures. After many blood cultures, bodily fluid samples and tests, it was eventually discovered that I had Endocardititis. A big lump of yuk inside my heart. Arse. I mean seriously, you couldn't make this up. So 2 more consultants to add to my collection - heart surgeon and heart medic. Onto a shed load of iv antibiotics to try and get this thing to bugger off - all the while being warned that it could break off and travel to my lungs. This would be a very bad thing.
Much head scratching and phone calling and general discussion resulted in the antibiotics not really working and the lump staying the same which meant that the nice surgeon that I met (just in case, but you won't need me) got to step up.
So I had my final frying on monday and then tuesday dawn was transferred to another hospital in london - The Wellington. This was necessary as they have bypass there - holy crap as I soon realised that we were talking MAJOR surgery here. Cracking my chest and bypass etc - the stuff of ER and Holby City. Just what is recommended after 5 weeks of radiotherapy when your body is in tip top form!
It must be said, the goodbye at the theatre door when you are heading into a thoracotomy is terrifying. I am not scared of operations etc but this was one time when the thought was there that I may not wake up. Fuck.
 |
| Back in the ward with a central line sewn to my face! |
But NO. For once the evilness didn't get to join in the fun and it was just yuk. O.M.G. and all other such shock related type exclamations. After all the shite I finally get a little bit of good news. I know that endocardititis is a big deal and I need 2 more weeks of iv antibiotics but evilness of the heart would have been very bad indeed. Very bad.
 |
| Yum! |
Wednesday, 15 August 2012
Incarceration
Now one of the problems with the evilness is that sometimes you get admitted to hospital at short notice and have to quickly pack a bag. I have managed to get that down to a fine art now - remembering all those essentials - mobile phone, iPad, chargers, for example! However lap top is classified as not essential as have iPhone and iPad to keep contact with the outside world and my support network. Now it would appear this is a small oversight when it comes to keeping up with my blog as the formatting goes to crap if I use my iPad and me being the pedant that I am, can't cope with that - hence the silence.
It can only be summised that the last few weeks have been shite! In and out of a variety of hospitals - including a jolly old stay in my favourite place, Hammersmith. Meanwhile during this time causing poor Dr Evil to do an awful lot of head scratching! I am never straightforward it must be said.
What we do know is that the very likely reason I have been feeling so crap for the last few months is because I have had Clostridium difficile or C. diff as it is more affectionately known. The comedy value of this is that you become treated like the unclean and everyone appears in your room wearing aprons and gloves etc. Just what you need when you are bored in hospital. However a quick trip to Wikipedia after being informed of this wondrous news actually brought a smile to my face. Why you may ask - well.....
".....significant diarrhea ("new onset of > 3 partially formed or watery stools per 24 hour period"), recent antibiotic exposure, abdominal pain, fever (up to 40.5°C), and a distinctive foul stool odour..."
Hurrah - how I have been feeling for months. C diff is one of those fun type hospital superbugs. Once I did my Sherlock Holmes bit I came to the conclusion that the 6 different antibiotics I had when I had the pyelonephritis/nephrostomy/stent fun and the stay in lovely Slough, is when I contracted this nasty little blighter. That was March. It is now August. So I am on lovely metronidazole to get rid of it.
However, what we have also established along the way is that maybe the lovely rash-inducing drug isn't doing as much as we would hope. After the horribleness of another colonoscopy and what can only be described as the humiliation of a virtual colonoscopy CT (I will leave you to Google), the evilness in my abdo has formed a 9cm mass low in my pelvis. Shit. More tremendous news. It is never good when you get taken out of your hospital bed in your PJs to be shown your scans.
Now what Dr Evil told me after giving me the plan, was that he had driven to the hospital that night, preparing himself to tell me that there was nothing more that he could do for me. Fuck fuck fuck. But and it's a big but - he looked at the scans himself and decided he can help.
So here I am at The London Clinic (now that you MUST Google), for the next 5 weeks having radiotherapy Monday - Fridays. I get the weekends off for preverbial good behaviour! The hope being that we can shrink this bastard - or maybe make it piss off for a while. My biggest battle is the mental one of being here for 5 weeks in Central London, a long way from my family and friends - but needs must and all that. This place is the Canine Gonads of places and I am getting the best treatment I could possibly get. Can't say fairer than that really. So that's me.
As if all this shit wasn't enough to be going on with, someone decided that no, you need more and very tragically Darrell's gorgeous, beautiful, wonderful dad; my truly lovely father-in-law has been taken from us. He too had the evilness but went downhill very fast and very unexpectedly. So Darrell had days of trying to visit two hospitals, terrified that he would lose both his father and wife. How insane is it that Darrell's 99 year old Grandad had to attend his son's funeral? Life is fucking sick sometimes. Sleep well Vic.
Mind you I have timed all this incarceration quite spectactularly well. I watched the entire 2 weeks of Wimbledon and also the entire 2 weeks of the Olympics - London 2012 and will also squeeze in the Paralympics. This may also have played a part in my abscence here even now that I have my lap top! Far too busy watching the amazing talents of Team GB. Trying not to shout too loudly for Jess Ennis, Mo Farrah, Bradley Wiggins, Sir Chris Hoy....... etc etc. Fantastically inspirational and great to have so much positivity in the country. A work colleague ensured that I was suitably attired for the occasion!
Now I have the appropriate equipment I shall keep you amused with my exploits!
It can only be summised that the last few weeks have been shite! In and out of a variety of hospitals - including a jolly old stay in my favourite place, Hammersmith. Meanwhile during this time causing poor Dr Evil to do an awful lot of head scratching! I am never straightforward it must be said.
What we do know is that the very likely reason I have been feeling so crap for the last few months is because I have had Clostridium difficile or C. diff as it is more affectionately known. The comedy value of this is that you become treated like the unclean and everyone appears in your room wearing aprons and gloves etc. Just what you need when you are bored in hospital. However a quick trip to Wikipedia after being informed of this wondrous news actually brought a smile to my face. Why you may ask - well.....
".....significant diarrhea ("new onset of > 3 partially formed or watery stools per 24 hour period"), recent antibiotic exposure, abdominal pain, fever (up to 40.5°C), and a distinctive foul stool odour..."
Hurrah - how I have been feeling for months. C diff is one of those fun type hospital superbugs. Once I did my Sherlock Holmes bit I came to the conclusion that the 6 different antibiotics I had when I had the pyelonephritis/nephrostomy/stent fun and the stay in lovely Slough, is when I contracted this nasty little blighter. That was March. It is now August. So I am on lovely metronidazole to get rid of it.
However, what we have also established along the way is that maybe the lovely rash-inducing drug isn't doing as much as we would hope. After the horribleness of another colonoscopy and what can only be described as the humiliation of a virtual colonoscopy CT (I will leave you to Google), the evilness in my abdo has formed a 9cm mass low in my pelvis. Shit. More tremendous news. It is never good when you get taken out of your hospital bed in your PJs to be shown your scans.
Now what Dr Evil told me after giving me the plan, was that he had driven to the hospital that night, preparing himself to tell me that there was nothing more that he could do for me. Fuck fuck fuck. But and it's a big but - he looked at the scans himself and decided he can help.
So here I am at The London Clinic (now that you MUST Google), for the next 5 weeks having radiotherapy Monday - Fridays. I get the weekends off for preverbial good behaviour! The hope being that we can shrink this bastard - or maybe make it piss off for a while. My biggest battle is the mental one of being here for 5 weeks in Central London, a long way from my family and friends - but needs must and all that. This place is the Canine Gonads of places and I am getting the best treatment I could possibly get. Can't say fairer than that really. So that's me.
As if all this shit wasn't enough to be going on with, someone decided that no, you need more and very tragically Darrell's gorgeous, beautiful, wonderful dad; my truly lovely father-in-law has been taken from us. He too had the evilness but went downhill very fast and very unexpectedly. So Darrell had days of trying to visit two hospitals, terrified that he would lose both his father and wife. How insane is it that Darrell's 99 year old Grandad had to attend his son's funeral? Life is fucking sick sometimes. Sleep well Vic.
 |
| Four Generations |
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| Olympic'd up! |
Saturday, 9 June 2012
7.9
As I sit here drinking my bedtime Ovaltine, watching the third of another 3 units of finest A+, I can't help but look at the last 48h.
Yesterday was round 1 of chemo. A day that started with the usual feelings. The unknown is always much worse. My gorgeous chemo nurse Eileen will be looking after me and she has already advised me to have a port fitted as my veins are teeny. I already have a big bruise from yesterday. But my bloods were not good. Great start. I am still hugely anaemic. So another blood transfusion recommended. Joy.
Had the new chemo. Very alarming as no anti-emetics are given. Just iv piriton - so I was no use to man nor beast! All went well and no reactions - just have to see what the next week brings.
One blood transfusion reaction later and the 3 units were abandoned yesterday and so here I am today. But this time
let's take 4 hours over each unit. Yawn!
I am staying in tonight as Dr Evil is coming to see me in the morning having spoken to my surgeon. It seems that he has finally listened to what I have been telling him for the last few weeks. How about we look at why I'm so anaemic? Where could the blood be going I wonder? Hardly rocket science.
Still 25 minutes to go and I get my arm back. Clever doctor that, that put the cannula in my left arm. Interesting time I've had trying to do anything! Provided some entertainment though!
Thursday, 7 June 2012
36 weeks
I warn you now - I am not in a good place right now so there is a huge potential for this to be a bit ranty. Don't tell me I didn't warn you!
So after the blood transfusion I had a load more energy but was still struggling with pain in my hip/leg. A week of steroids helped a little but not enough so stop me waking up all night long. I was also due to have a permanent stent fitted so was hoping if any of my pain was related to that, then at least that would go. Or so I thought. Stupid diligent me contacted the urology team to let them know I had been on dex for a week just in case that would alter things. Well, alter it did. They cancelled the stent procedure. Pissed off would be an understatement as chemo has been delayed to get this procedure done. There was talk of doing it in 2-4 weeks. Great. Dr kidney and Dr anti-evilness have now decided that we need to get on with chemo and deal with the stent later.
Meanwhile the next day it is the big appointment to sort out the next kick-ass drug protocol. And what a surprise - the plan has changed again. I'm not sure why I am surprised really - they do it every time. I mean, this is only my life we are talking about here, my plans for some sort of normal existance. Why on earth would I need to know what is going on?
The plan is quite frankly shit. There is no other way to describe it. You may recall it was to be treatment every 2-3 weeks for 6 cycles initially. It would appear that the goal posts have moved - out of the freaking stadium. I am now facing treatment every week for 12 cycles. Mm ok, I can do that I think. Weekly is less than ideal, but for 12 weeks, it's manageable. Ah not so, my young Padawan learner. A cycle is actually 3 treatments - so the reality is 36 fucking weeks of treatment. 9 months (the irony of it being 9 months is so not lost on me!). There was I hoping for 3 months as 6 months is really hard going, and instead I get the big fat booby prize of 9 months. So chemo for the rest of this year and going into next. Thanks. Oh but it's ok as I will get a 2 week break along the way. Gee thanks, I am so eternally grateful.
Weekly means no getting away during the "good week". Weekly means kissing goodbye to any sort of plans. And let's not forget the real gem in all of this. 9 months of treatment and it won't get me into remission. We will just casually drop that in whilst you are signing the consent form. It will hopefully control things, maybe shrink them but the evilness is not going to go away. You may now begin to see why I am in a rant. Why being strong, being brave etc etc is a major struggle right now. It all seems rather pointless to be honest. I get to have treatment for 9 months but it won't get rid of this evil bastard thing. So really, I find myself wondering what is the point? It has crossed my mind to say no. That tends to start freaking people out around me when I say that. They can't see that a life of feeling like shite is no life at all really. Obviously they want me around for as long as possible. They don't or can't see it from my shitty side of the fence. I have put many animals through chemo and my number one priority has always been Quality of Life - and that has to be mine. I fail to see why I should put myself through 9 months of hell if it isn't going to make a massive difference.
But for now - I start the marathon tomorrow. It seems like a very long, bleak road ahead and right now that drunk dude that was asleep in the corner of the party, is back in the room, vomiting everywhere and putting a real dampner on things. It feels like I am just going through the motions of life and I hate that. The green-eyed monster has joined the party again. I am envious of everyone for just being able to have a normal life. I have a birthday pedicure that has had to be put on hold as I don't know how I am going to feel so can't comit. I mean FFS, I can't even plan a bit of pampering at the moment.
My insurance company have said they will only pay for this new drug for 12 months. So if it helps and doesn't make me feel like shite, and my Dr wants me to stay on it long term - then I can't. It just gets better doesn't it? Mind you - if I was an NHS patient I wouldn't be eligible to have it at all - but don't even let me start on that particular rant.
So I will start treatment and see what happens. I figure that is all I can do. Being a biological it should, in theory have less side effects that regular chemo. Although the ones it has are real peachy. Disfiguring skin rash, diarrhoea, brittle hair, curly eyelashes (we don't mind that one!) and let's not forget the allergic reaction and possible anaphylaxis. As I am sure you can imagine - I can't wait for tomorrow! The only good thing is that our dear friend the FFH doesn't get a piece of the action this time and for that I am eternally thrilled. There will also be no repeat performance of Mr Wiggly as the infusion is just for an hour. However this does mean that I may be sporting the heroin addict look as my poor veins are in for a battering. But my gorgeous chemo nurse, Eileen, has said that if we start to struggle then she is going to insist on a port. Seeing as I am a skinny minnie now, my veins are teeny and weekly iv action is going to take its toll. So another play with my dear friend Mr midazolam and my favourite radiologist may be on the cards.
You were warned were you not!!! It's a bit grim being me right now. I know I am going to have to snap out of this soon otherwise bastard evilness is winning again and we know how that isn't an option. I guess once tomorrow is done and I start to see what the reality is like then that may help (or not!). It's the joyous unknown at the moment and we all know how popular that is!
Oh and before I go, just one last little gem to finish it all off!! I had another CT yesterday - they want a baseline as it has been 6 weeks since the last one. I didn't like to point out that surely all these X-rays can't be good for me - I mean they can give you cancer can't they?! Anyway, black humour aside. The radiographers always have to ask you when your last period was and is there any chance that you can be pregnant. Shitty questions given my set of circs but I understand. They are normally very apologetic when asking. Ah but not yesterday. As if I didn't feel crap enough. I explain that last period was a month ago, can't remember exact date but am due now (PMT probably not halping the current mood!). But no, I sigh, there is absolutely no chance that I can be pregnant. Now not content with the big sigh and glum face in front of her, she then asks "oh is that because of your treatment?" Oh dear god. How I didn't shove her head into the floor is beyond me. Er no you insensitive oik, it's because having cancer means that pregnant is the last possible thing that I can be (and the thing that I most want to be and will never be). I've just told you that I am having periods so clearly the chemo didn't nuke my ovaries which is great, but I start chemo tomorrow so why on earth would I be pregnant, and after any chemo you have to wait 18-24 months before trying anyway. I was stunned. How fucking insensitive is it possible to be? She had my form in front of her detailing "recurrent bowel cancer" and "baseline for chemo". I despair. I should have just said - No I can't be pregnant as I am a lesbian.
Now that would have brought a much needed smile to my face! Thanks for reading.
So after the blood transfusion I had a load more energy but was still struggling with pain in my hip/leg. A week of steroids helped a little but not enough so stop me waking up all night long. I was also due to have a permanent stent fitted so was hoping if any of my pain was related to that, then at least that would go. Or so I thought. Stupid diligent me contacted the urology team to let them know I had been on dex for a week just in case that would alter things. Well, alter it did. They cancelled the stent procedure. Pissed off would be an understatement as chemo has been delayed to get this procedure done. There was talk of doing it in 2-4 weeks. Great. Dr kidney and Dr anti-evilness have now decided that we need to get on with chemo and deal with the stent later.
Meanwhile the next day it is the big appointment to sort out the next kick-ass drug protocol. And what a surprise - the plan has changed again. I'm not sure why I am surprised really - they do it every time. I mean, this is only my life we are talking about here, my plans for some sort of normal existance. Why on earth would I need to know what is going on?
The plan is quite frankly shit. There is no other way to describe it. You may recall it was to be treatment every 2-3 weeks for 6 cycles initially. It would appear that the goal posts have moved - out of the freaking stadium. I am now facing treatment every week for 12 cycles. Mm ok, I can do that I think. Weekly is less than ideal, but for 12 weeks, it's manageable. Ah not so, my young Padawan learner. A cycle is actually 3 treatments - so the reality is 36 fucking weeks of treatment. 9 months (the irony of it being 9 months is so not lost on me!). There was I hoping for 3 months as 6 months is really hard going, and instead I get the big fat booby prize of 9 months. So chemo for the rest of this year and going into next. Thanks. Oh but it's ok as I will get a 2 week break along the way. Gee thanks, I am so eternally grateful.
Weekly means no getting away during the "good week". Weekly means kissing goodbye to any sort of plans. And let's not forget the real gem in all of this. 9 months of treatment and it won't get me into remission. We will just casually drop that in whilst you are signing the consent form. It will hopefully control things, maybe shrink them but the evilness is not going to go away. You may now begin to see why I am in a rant. Why being strong, being brave etc etc is a major struggle right now. It all seems rather pointless to be honest. I get to have treatment for 9 months but it won't get rid of this evil bastard thing. So really, I find myself wondering what is the point? It has crossed my mind to say no. That tends to start freaking people out around me when I say that. They can't see that a life of feeling like shite is no life at all really. Obviously they want me around for as long as possible. They don't or can't see it from my shitty side of the fence. I have put many animals through chemo and my number one priority has always been Quality of Life - and that has to be mine. I fail to see why I should put myself through 9 months of hell if it isn't going to make a massive difference.
But for now - I start the marathon tomorrow. It seems like a very long, bleak road ahead and right now that drunk dude that was asleep in the corner of the party, is back in the room, vomiting everywhere and putting a real dampner on things. It feels like I am just going through the motions of life and I hate that. The green-eyed monster has joined the party again. I am envious of everyone for just being able to have a normal life. I have a birthday pedicure that has had to be put on hold as I don't know how I am going to feel so can't comit. I mean FFS, I can't even plan a bit of pampering at the moment.
My insurance company have said they will only pay for this new drug for 12 months. So if it helps and doesn't make me feel like shite, and my Dr wants me to stay on it long term - then I can't. It just gets better doesn't it? Mind you - if I was an NHS patient I wouldn't be eligible to have it at all - but don't even let me start on that particular rant.
So I will start treatment and see what happens. I figure that is all I can do. Being a biological it should, in theory have less side effects that regular chemo. Although the ones it has are real peachy. Disfiguring skin rash, diarrhoea, brittle hair, curly eyelashes (we don't mind that one!) and let's not forget the allergic reaction and possible anaphylaxis. As I am sure you can imagine - I can't wait for tomorrow! The only good thing is that our dear friend the FFH doesn't get a piece of the action this time and for that I am eternally thrilled. There will also be no repeat performance of Mr Wiggly as the infusion is just for an hour. However this does mean that I may be sporting the heroin addict look as my poor veins are in for a battering. But my gorgeous chemo nurse, Eileen, has said that if we start to struggle then she is going to insist on a port. Seeing as I am a skinny minnie now, my veins are teeny and weekly iv action is going to take its toll. So another play with my dear friend Mr midazolam and my favourite radiologist may be on the cards.
You were warned were you not!!! It's a bit grim being me right now. I know I am going to have to snap out of this soon otherwise bastard evilness is winning again and we know how that isn't an option. I guess once tomorrow is done and I start to see what the reality is like then that may help (or not!). It's the joyous unknown at the moment and we all know how popular that is!
Oh and before I go, just one last little gem to finish it all off!! I had another CT yesterday - they want a baseline as it has been 6 weeks since the last one. I didn't like to point out that surely all these X-rays can't be good for me - I mean they can give you cancer can't they?! Anyway, black humour aside. The radiographers always have to ask you when your last period was and is there any chance that you can be pregnant. Shitty questions given my set of circs but I understand. They are normally very apologetic when asking. Ah but not yesterday. As if I didn't feel crap enough. I explain that last period was a month ago, can't remember exact date but am due now (PMT probably not halping the current mood!). But no, I sigh, there is absolutely no chance that I can be pregnant. Now not content with the big sigh and glum face in front of her, she then asks "oh is that because of your treatment?" Oh dear god. How I didn't shove her head into the floor is beyond me. Er no you insensitive oik, it's because having cancer means that pregnant is the last possible thing that I can be (and the thing that I most want to be and will never be). I've just told you that I am having periods so clearly the chemo didn't nuke my ovaries which is great, but I start chemo tomorrow so why on earth would I be pregnant, and after any chemo you have to wait 18-24 months before trying anyway. I was stunned. How fucking insensitive is it possible to be? She had my form in front of her detailing "recurrent bowel cancer" and "baseline for chemo". I despair. I should have just said - No I can't be pregnant as I am a lesbian.
Now that would have brought a much needed smile to my face! Thanks for reading.
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