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.