"But you look so well?", I get this numerous times a day, but actually I am not, I have Terminal cancer, for every smiling selfie you see of me on Facebook or Instagram there is an equally unattractive reality of shooting up hydromorphine hourly to keep on top of pain. As I've stated in my author blurb I have put off putting my experience in writing for nearly 4 years, I had just turned 30 when Cancer made me its bitch (well it tried), where do you start when you're not at the beginning of your journey? How do you keep people interested enough and educated enough about what I have been through and what I am going through, to keep them reading? Well I suppose I should give an abridged background of what the hell is going on, I'm about to pop my blogging cherry so to speak, so please bear with me, after the background info, I hope to begin to entertain you more than bore you.
I was diagnosed with a rare cancer in April 2012, I had a 1 kg tumour attached to the outside of my stomach (beneath the skin) surgically removed, spent a month in hospital waiting for my stomach to start working again, waited until July 2012 to be advised that international pathologists could not even determine what type of cancer I had, so they decided it was a subtype of a type of cancer called Soft Tissue Sarcoma, Sarcoma accounts for less than 1% of cancers diagnosed each year, so rare, very rare. I went through 4 cycles of chemo called Doxorubicin and ifosfamide, what's Chemo like you ask? Imagine the worst hangover you've ever had x 100 everyday for 2 1/2 weeks and then you start to feel a bit better and you've gotta skull another 6 bottles of tequila again and repeat, not to mention the hair loss (EVERYWHERE but my arms, yes EVERYWHERE!) and the weight gain, hairy face and disproportionate facial bloating from the truckloads of steroids they pump into you, people say "yes, but you're alive, forget what you look like", ok you wake up tomorrow morning look in the mirror and see Lara Flynn Boyle and I'm not talking Twin Peaks Donna Hayward, I'm talking pillow faced current day Lara Flynn Boyle and see how you feel about looking like a marshmallow stuffing chipmunk with more facial hair! I then had more of my stomach removed, this took us to November 2012, treatment complete. Bald as a badger, a bit beaten, bruised and bloated but alive.
Fast forward to the 5th of September 2013 and those words that every cancer patient or survivor dreads "it's back", you are now classed as terminal, oncologists no longer look for cure, they look for prolonging your life or death depending what way you look at it, throughout future posts I will revisit certain parts of my tale of woe more in depth for you, because let's face it , everybody loves a good sob story, but for now the abridged version it is.
So we start again, I had a surgery to remove a couple of abdominal tumours, was told I would be lucky to make 3 months, advised to have a surgery that entailed being gutted like a fish and having chemotherapy administered to the abdominal cavity during surgery (I rejected this option), I had 3 further types of chemotherapy, I had 3 different types of immunotherapy, a kinase inhibitor, radiation, numerous emergency department admissions and another massive 8 hour surgery where 2 surgical teams performed a tumour debulking, this one left me with a lovely scar they call the 'mercedes' scar, its basically a peace sign from the bottom of my chest bone to my pelvis. I have just ceased Keytruda (immunotherapy) as the drug unfortunately attacked my lungs and we had to discontinue treatment, we are now revisiting radiation and I am currently peeing like a man with a prostate problem due to my pelvic tumours, I couldn't count on my hands and feet the amount of times I've fallen asleep on the loo trying to pee.
I am a 34 year old woman who has had to recently move back in with her parents (whom I haven't lived with since I was 19), as I require 24 hour care, well I prefer to call it "surveillance" as I can have a tumour bleed at any time and need immediate hospitalisation, during some of these bleeds I cannot breath, I am curled up in a ball with pain so intense that I can't speak, so as you can imagine calling an ambulance can become difficult.
For those of you who are lucky enough to still have a Mum and or Dad in their lives and even luckier to have had your relationship reach a point ,that you are now friends with your parents, (you no longer put up with them so you'll be allowed to stay out past curfew, you actively choose to go out to dinner with them and even pay for it) you have come full circle, it's a wonderful stage in life. Prior to moving back in with my parents we had obtained parental/child perfectionism (btw did I mention I have a brother, well I do, he is a 31 year old married Dad with one daughter) we were the family people envied for our closeness, cancer of course brought us even closer, we were grateful for every extra moment we got to spend together......fast forward from November last year to now and I am titling a blog post "Familiarity breeds contempt", don't get me wrong, my parents and I get along great, it's just full on!
My Mum is my 24 hour carer (unpaid) and we spend most of those hours together, our problem is that we are too similar, we are both highly sensitive and we are always trying to please everybody and that is simply impossible, you can't please everybody every hour of the day. It also doesn't help that I am impossible to live with at the best of times, never mind throwing terminal cancer, a myriad of opioids that I'm on into my already highly developed OCD mix and throw in an eye rolling problem, only today Mum asked if I could use the eye roll a little more sparingly, well actually, no, no I can't, stupid behaviour has a direct correlation between my brain and my optic nerve, if you continue to behave stupidly, I will continue to eye roll, alter your behaviour and I will alter mine accordingly (well that's the conversation I had in my head, I of course agreed to be more mindful of my eye rolling in the future) and you have a ticking time bomb or do you? We have acknowledged the stress moving in has put on our relationship and the stress it has put on my parents relationship, when do they ever get a chance to debrief and destress? I am always around.
The eye rolling thing is a great example of familiarity breeding contempt, Mum has always known it's there, she just forgot how annoying it is to be around regularly, just like I forgot how annoying my Dad can be with constant finger tapping and background noise making, he just simply cannot "be", he has to be making some sort of noise, he's currently banging around in the kitchen as I type.
So for now as we reintroduce each other to our annoying habits and try to realign our behaviour so that we can make living with each other somewhat bearable again, I Just want you to remember that the familiar isn't always bad, in fact familiarity has more pro's than con's, it's just hard to think of the pro's while my Dad bangs his empty cereal bowl and teaspoon (he has always eaten his cereal with a teaspoon) in the sink as he has done since before the dawn of time, every morning before work without fail, never toast on a working weekday, always a bowl of cereal eaten with a teaspoon and there it is, as it always has been a bowl filled with water and his teaspoon sitting in the sink every morning when I wake up, just as it was when I was a kid, familiarity and it makes me smile 😀
Familiarity breeds contempt
As I sit here at 12.30am and listen to the rain, crying and blowing my nose, I wonder why this happens? Why do I go along for weeks and not give dying a second thought? Even when I write about it, it's as if I'm writing in the second person, a complete disconnect from me and the terminal cancer as if I'm writing someone else's story, I mean this couldn't possibly be me, I couldn't possibly be dying. Firstly I'm too young for this shit, secondly, I'm still yet to achieve anything real in my life and thirdly, I have still not taken my family to Broome or been to the Melbourne Cup as a guest in the Emirates tent, I mean seriously! Terminal cancer is meant to be for people who are in their 90's or smoked 2 packs a day for years, it doesn't happen to a woman who has just turned 30, drank socially, smoked a drag or two when stressed and other than mild asthma and being coeliac (under control) has been in relatively good health all her life, no, this couldn't be about me.
Thud......there it is, realty, on the 3rd of August at 12.25am, I remember it is me, I am the one dying. I am the one who has been finding the transition from being a woman who lived out of home, drove her own car and had a nice comfy job, to this, unemployed, not allowed to drive her own car and most difficult of all moving back home. It's not my parents fault, they have done everything in their power to make the transition as easy as possible and they care for me so much, yet here I am every day rolling my eyes at my mum, telling her the way she does things in "her" household isn't right, controlling who can come and who can go all depending on if they have a runny nose (I have a compromised immune system, so little colds can turn into big infections and viruses for me which can lead to death!) or of I'm in the mood mentally for it or not. I should be trying to fit in and we should all be trying to work together, a bit my way, a bit Mum's way and let's be serious with two women in the house, there's no room left for dad to have anything his way.
So tonight as I looked at myself in the mirror, about to brush my teeth (shit that reminds me I didn't get around to brushing my teeth) I saw the person in the reflection who is dying and it is me and I am making my Mum's life especially difficult, she has to deal with the fact knowing that her daughter could die at any moment, she could walk into my room tomorrow and find me lifeless or we could be watching tv tomorrow night and I have a missive tumour bleed and that's it, all over red rover. So why does my stupid mouth insist on speaking before it starts thinking? Because I have been so used to running my own race (house wise I mean, like silly things, toilet roll over or under.....over is of course the correct way, glasses and cups, rim up or rim down......up of course, for this I have no reason) the list of stupid and insignificant things I make nagging comments on is endless and meanwhile my mum is run ragged mentally trying to not only get on top of the fact that her daughter is expiring in front of her eyes but also that her daughter is just not happy with anything she does and the truth is, Mum does everything 100% right, it's just 100% right her way and that's what I have to realise too, not only did I run my own race, so did my Mum.
So I had this overwhelming need to hug my mum, I don't know if it's because I'm scared for some reason that I might not wake up tomorrow, I mean I have no more of a reason today than I did yesterday to think I'm going to die in my sleep tonight and I didn't even think about it last night, so like I said in my opening sentence to this blog, why tonight?
Other than I think I needed a good kick up the arse to realise that my Mum does nothing but try to please me from morning until night, I don't know why tonight? One thing I do know is though, it's raining and one thing I've always loved in life is lying in bed at night listening to the rain dancing on the roof.
So although I've realised again as I do every few weeks, that yes I am writing about myself, not some 95 year old smoking and drinking a glass of whiskey. I remember why I've fought so hard to keep on living, I've fought this hard because I'm not done learning, I'm not done loving and I'm not done laughing, I just hope whoever or whatever has kept me going this long, realises as well that I'm not ready to go, not just yet.
Stay fabulous rockstars ❤️🤘🏼
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.