I've been home from hospital for a week now and I am still trying to adapt to the new norm. Everybody gets excited about me coming home and you're in this huge hospital escaping high and then reality hits, like a giant clap of thunder right on your head, you're home, so why do you feel so blue? The first few weeks at home after a decent hospital stay feels like you've just come off a two week bender in Vegas, where you had unlimited money, alcohol and drug supply. When you get out you have to realign yourself with your reality and you usually don't have the same amount of drugs being pumped into you, so you're majorly coming down and that's why I liken it to a bender, not because we play roulette at the nurses station or we're slamming tequila shots at bedtime, it's mostly the coming down from the drugs they feed you constantly and at home you just don't keep up with that same regimen (even if you're meant too.....oops).
It's both physically and mentally draining. Upon discharge from hospital I feel like I'm an alien in my own home, you feel like you're walking around in a daze, things don't feel real, I'm snappy, I'm irrational, depressed, concerned and the list goes on, then you have to factor in the fact that you were basically told you would not make it out of the hospital and you have to get your head around accepting that you did get out. I was standing at the sink tonight, overlooking our lounge room and just watched everyone chatting and pottering about (my Aunty and Granny are over from Ireland, so that's amazeballs......yes I totes just said amazeballs!) and realised for the thousandth time that I'm not going to be here one day, this will all go on without me, whether I like it or not. Major FOMO and all they were doing was watching TV, imagine if they were doing something interesting!
It's that reality check again, you see I can ho hum about life, when I'm not feeling major pain, but when you're admitted to hospital it's that glaringly obvious reminder that you're dying, seeing the word palliative everyday in the hallway and watching other people come into the ward, only to leave with a sheet pulled over them and a butterfly placed on the empty room door (when people die in my palliative care ward, the nurses place a beautiful fake butterfly on the door) to say that I'm harder to get along with after getting out of hospital is a complete and utter understatement, I'm a total nutcase, just trying to get my mind and body around it.
Physically, you are also stuffed, you feel like you've ran a 4 week marathon, your muscles really deteriorate very quickly and you don't tend to use them in hospital, you really only move from the bed to the toilet or down the hallway to the family area, so your body is in just as bad a shape as your mind (well not quite, I'd say the mental stuff is harder to deal with). Thankfully though my Mum and the family have the patience of saints, they understand now and they give me a wide berth.
My poor Mum cops it all day long, I am a cantankerous bitch at the best of times never mind when the chips are down and when I get out of hospital I am like a bear with a sore head all day, I don't know how she hasn't suffocated me in my sleep yet (death humour......too soon?), my mind and body are at war with each other, my mind says get off your ass and do those dishes and my body says, get your Dad to do them. You see I'm a doer, I "do" the dishes, I cook dinner, I do the laundry, I just like to do the do and my stupid body doesn't allow me to do the do, just let me do the goddamn do!!!! So today I did the do, I did laundry and I cooked dinner, so for me that was a major feat. I know give her a medal, she hung out some washing and baked a chook, a 10 year old can do that, but for me who has had no energy or strength at all for the last few weeks, these little things are big things.
On top of getting out of hospital the lady from palliative care came to my home to redo my advanced health directive the other day, for the third time, because the first and second time weren't traumatic enough, it's a laugh a minute!
For those of you who don't know what an advance healthcare directive (AHD) is, it is basically a piece of written information informing people of my medical intentions if I am incapable of doing so myself, it is signed and authenticated by a JP, but it can still be overruled, it's really more for the people who care about you, so there is no confusion and it takes the stress out of making decisions, like should you be put on a ventilator to help you breathe? That's a big decision to make, so if it's written down on a piece of paper, then your mum, partner etc. don't have to make that unenviable decision for you, it's also good information for the Paramedic's/Ambulance officers, doctors etc. to have and if you have a terminal or chronic illness like me, they say you should leave it on top of the fridge and the Paramedic's know to look there.
This isn't just for terminally ill people or the elderly, everyone should have an Advanced healthcare directive, God forbid you should have a serious car accident and you're unconscious and when you arrive at hospital, you have a turn and stop breathing, do you resuscitate or not? Firstly let me tell you, resuscitation is not like it is in the movies, it's not just compress and breathe, they actually have to compress your chest to 75%, it breaks your rib cage bones, I've been told by health professionals you actually hear the bones breaking and quite often you end up being ventilated or you could be brain dead. Now for a healthy 34 year old, with no other disease or illness, resuscitation is still an option for you, but for me, to go through all of that and then still be dying anyway, it makes no sense, so that's the reason I did my AHD for the third time today, as it was never explained to me properly about the 'Do Not Resuscitate' (DNR), they don't just grab paddles, yell clear and boost you back to life, it's a very scary and painful experience, so the woman explained everything properly with myself and my mum. Confronting does not begin to describe it.
Talking about and making decisions about these things is bloody hard, to say the least, especially when you're closer to your expiry date than most, do you want ventilation? Do you want nutrition if you can't eat? Do you want major surgery if needed and the list goes on and you just have to sit there and suck it up, whilst you talk about these things as if you're writing your grocery shopping list. I'm not saying that the person who did it was impersonal, she was lovely, she cares and she understood how distressing this all is, it's frigging scary actually saying these things out loud and then writing it down and signing it, it's just a lot, but if you're in Australia and you're in a similar position to me, I recommend you do it, if not for you, for your loved ones.
You see I confront the fact that I am dying everyday, people talk about it, I joke about it, like when people have a go at me for sunbathing and my response is "hey I have terminal cancer and if I'm gonna die, I'd rather die with a tan", that's all bravado, it's me not really accepting it myself, I'd rather joke about it, than cry about it, but I definitely don't want to have to answer those detailed stupid questions again, so I'm hoping it was 3rd time lucky and I never have to see my AHD EVER AGAIIN!!!!
Today was nice, tomorrow will be easier and the fact that I just said tomorrow, speaks volumes, as two weeks ago, I didn't think I would have a tomorrow.
Stay fabulous x
My name is Lisa Magill and I have been navigating the minefield that is cancer since just months after turning 30, people have been saying to me for years that I should put my thoughts into writing and as time has progressed I thought I had left it too late, well here we are nearly 4 years in and for some unknown reason I've decided to start to write today.