Last year I struggled terribly, having to deal with the pain on a daily basis, which pulled me down into a swirl of depression, which then made me hate myself and my life even more. I read some of the posts on my metavivors page and I wonder why on earth do we fight to stay alive? Some of the stuff we have to deal with - I wonder ‘is it bloody well worth it?’ We take medication to keep the cancer at bay for as long as possible but the side effects we have to deal with daily are just plain bloody crap! Is it worth it????
I am still on my first line of treatment...for three years now (3 year mbc anniversary 29-01-19). My oncologist has asked if I would like to try another treatment since this one causes me so many aches, but I say no. Why cut my limited choices down this early? Other lines of treatment may not work and then by having stopped the original treatment, going back on it a second time, may have tweaked something in my system and so it stops working and so I’m screwed.
But this first line treatment and of course having cancer has changed me.
- Get so tired
- Not an ounch of oomph (I see this as different from being tired)
- I am sore - hands, knuckles, feet, back - lower back, down spine, flanks, joints
- Mood swings
- Constant pain in my right heel, so have trouble walking
- Intolerance to bullshit
- Intolerance to everything
- Feel lonely
- Envy everyone else for what they have and I don’t
- Dry fanny
- Susceptible to urine infections
- Struggle for words terribly or get the wrong word - kids think its hilarious, I find it bloody frustrating
Even though the oncologist, my GP and I have been trying to sort the pain out, it is constant. The level of pain changes constantly, so what dosage may have worked for yesterday, will not work for today. Then you get the break through pain and so you take more medication, but of course it takes 30 mins or so for it to kick in, so til then you have no choice but to take it and ‘handle’ it. And of course, the higher the dose you take either bungs you up so you can’t do a poo, become constipated which then sets off more crap to deal with. Along with the constipation, higher doses of pain meds make you drowsy, so at work I can sometimes be spending valuable work time shaking my head to try and wake myself up or trying to open my eyes - fighting the fatigue. When its finally home time, I am a danger on the roads - to myself and everyone else who is anywhere near the vicinity of me and my vehicle. So when people say to me “Tania, theres no need for you to live in pain - it can be managed”, yeh it can...to a degree and at different times. NEVER EVER for a whole 24 or even 12 hour period. When I walk, I am like a dottery old lady...you may laugh, but for me, its no laughing matter. Most of the time, I walk with a limp while I try not to make my heel worse.
I can no longer have sex - the meds I am on have affected my hormones which leads to all sorts of nasties like a dry fanny, becoming susceptible to UTI’s. You may also think thats hilarious - especially those of you who are younger and think that its disgusting that older couples even contemplate having sex. But it takes the option away from you. I have told my husband to go find someone to have sex with since I can’t, that I know it doesn’t have anything to do with his love for me but he says no he can’t do that. And I can see people thinking of course he shouldn’t be...what an arsehole if he was to but what do you know til your faced with that situation. Sex is just a physical act....our love for each other is much deeper than that. There are creams you can use, but they have female hormones in them and my breast cancer feeds on hormones. And of course that where the lack of oomph plays a part as well.
I still work, thankfully no longer fulltime, having dropped Fridays but I was home yesterday unwell with all intentions of going to work today. This morning I simply couldn’t open my eyes so I have stayed home but feeling hopelessly guilty. Not guilty enough mind you, to get up and get dressed and go. I can’t do that all the time, every time I don’t feel like I can’t handle going to work and I don’t want to all the time, I enjoy my job but there are days when I just don’t have the oomph to get up and out. My brother had major surgery yesterday. Because I am home today, I was thinking maybe I could go visit him today but I just don’t have it in me to go. I want to see him and see how he is and give him a big hug, but its that oomph word again. The lack of it scares me, no motivation to do anything - its - I don’t even know what it is.
This is simply a small taste of how the cancer affects me each and every day and those around me too.. I so want 2019 to be a much better year, but I am worried the cancer will keep invading my life, not just my bones and eventually my organs. Its hard not to get frustrated when your back is so sore after standing at the sink doing the dishes, or when it takes you a few minutes to get out of bed in the mornings or when you hobble from the bedroom to the kitchen to look for your medication.
I still maintain that burning question in my mind ‘is it worth it?’ What sort of bullshit life is this? I wish I could be a bit more grateful that I’m alive and grateful I wasn’t one of the unlucky ones who were told they only had weeks or months to live. I wish I could stop being envious of everyone else out there leading their lives, going out having fun, I wish I could stop resenting people for not thinking about me all the time and living their own lives, I wish I had taken action when I first saw this stupid lump, I wish I’d never gotten cancer - I wish so many things. I wish I wasn’t so bloody selfish and self centred, I wish I didn’t feel like life revolves around me
Thursday 24th January 2019 - 11.29am
