So I've been struggling over the last few days with a cognitive impairment, hand eye coordination, my brain is basically like mush and the ability to write anything, even a shopping list has eluded me and it's been breaking my heart, as my blogging has really what's been getting me through the last few weeks, so the thought of not being able to do it, has been killing my life!!!!!
I woke up at 5am this morning to yet another drug induced nightmare, this time it was a girl with long black hair and a white long nighty that covered her feet crawling towards the TV, I luckily fought my way out of that dream, you know that feeling? The one where you're struggling with yourself to wake up, because you know it's not real, but you just can't shake yourself awake, thankfully with a little bit of a Yelp (yes I yelped in my sleep) I woke myself up and I rolled over and picked up my phone and proceeded to scroll through my terminally fabulous fb messages and one stood out.
It was from a young woman, Jess, also with a similar type of cancer to myself, we both have different subtypes, but our disease is from the same family, kind of like a cousin once removed if you will. This beautiful young woman (24, she says she's determined to make a quarter century, I say why stop there? Be selfish, go for the century, Sir Donald Bradman wouldn't have stopped at 25, I know this beautiful lady is striving for higher than that, but sometimes we need to set small goals, in order to get to the big goals) proceeded to discuss her symptoms and I had to keep stopping and typing to her that I had the exact same and then I'd read another sentence, stop, message her that I too was the same and this went on and on.
This wonderful woman is currently in another country trying a last ditch attempt at I would presume cure, not just pain management or a short remission, actual cure and I say more power to her, people have suggested these things to me over the years and I have always chosen my own path, I'm just not one of those people who will start a 6 week kiwi fruit cleanse, whilst bathing in Manuka honey and chanting chakras to an open fire, it's just not me and so far my choices (that I am aware of) have been the right ones for me, other than the Keytruda immunotherapy, that stuff gave me high hopes, at a high cost and sadly caused me more harm than good, but that is the risk you take with these things, you're damned if you do and you're damned if you don't!
Receiving this message this morning has given me a renewed vigour, our similarities (cancer symptoms wise) are uncanny and I can just feel her energy through her message, she's like me, a not a lie down and just take it kinda girl and I love that! Good luck my beautiful warrior and I will see you when you get back to Oz ❤️
Speaking of unexpected relationships as a result of this shituation, somehow through Instagram I've connected with another young woman named Roni, in her 20's with stage 4 cancer, she is a bubbly and vivacious talented photographer, she has been fighting for quite some time now and she just has this amazing smile that would light up any dark day. We've been fb messaging back and forth for months now and just the other day we bit the FaceTime bullet (so to speak) and we talked face to face via the wonderful world of Facebook video chat, words cannot begin to describe the spirit and warmth that exudes from this young woman, we spoke non stop, or maybe I did, I don't know, all I know is, there were no awkward moments of silence, it just flowed naturally.
As I mentioned I have been struggling terribly the last week and one thought that is always at the back of my mind is, what about when I die? Who will keep me company for another 40 years before my Mum or Dad join me in club heaven (no crocs allowed in my club heaven by the way) and especially in the past week, the thought was weighing heavily on my mind, I know not all of you will believe that there's a big party in the sky waiting for us and to be quite honest, I'm not 100% sure of it myself, but it gives me some comfort knowing that while you guys are left down here, toiling away at work, stressing at everyday stresses, that I'm up there with a bunch of family and old friends (that's the whole point though, I only have a couple of family members up there and thank God no friends) sipping, who am I kidding? Sculling from a bottle of really expensive champagne, playing charades with Robin Williams, Audrey Hepburn and Patrick Swayze (yes Johnny!) eating never ending amounts of gluten (here on earth I'm coeliac, in Heaven you can eat whatever you want, whenever you want!) and that's what usually gets me through, but not this week, until I spoke with Roni, this is going to sound morbid, but the thought of someone like Roni maybe joining me up there, gave me some comfort, some piece of mind. Now don't get me wrong I'm not wishing the end of this amazing woman's life, just so I can have a bff up in the sky, far from it, I wish for her like I do every cancer sufferer a cure, but it just gave me comfort and that was all l needed at that point in time.
This week has been an emotional roller coaster to say the least and I'm still on it at the moment, I've had immense highs, my surprise blind date with Constance Hall and her bestie Annaliese, obviously are at the top of that list of highs, I have been blessed with meeting or talking with 4 completely different women (Con, Annaliese, Roni and Jess) and each of them have brought something different to the table, but they all have one thing in common, they are strong warriors who don't take shit from anyone and every time they get knocked down, they get up again and if that isn't special, I don't know what is.
So to you Con, Annaliese, Roni and Jess, I thank-you, I thank-you for having the courage to reach out to a complete stranger and share your most intimate stories with me, we all now have a bond that no-one else could ever understand and in this world of cancer uncertainty, it's nice to know that I now have four fabulous Rockstars in my life to turn to.
So what have I taken from this week? Be open to new possibilities, because they could quite literally change your life, I know my life has changed this week and definitely for the better, even if my head is still mush, my vision is blurred and my bowels are slow (yeah I know, how disappointing), I'm in a better place today than I was last week and maybe next week I will be in an even better place again.
Today I go in for a bout of radiation and I go in with my head held high in hope, that maybe, just maybe, it's my turn for that miracle.
Stay fabulous Rockstars ❤️
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
Bowels, we all have them, we all use them and we all don't like to talk about them, or so you'd think, I talk about my bowels all day everyday, have I been? What was its consistency, colour, small or big? You see once you're diagnosed with cancer and start some treatment, whether curative or not, you will end up on some sort of drug that will bind you up tighter than a bondage scene from 50 shades of Grey, basically, steroids will clog you, anti nausea meds will bung you, pain meds will block you up too and then there are the other myriad of drugs that also cause your arse to pucker up like a dried raisin and usually you're using a combination of all or some of these already ass achingly blocking meds, so if you've been constipated, times that by 100 and you might just get an idea of how blocked ones plumbing becomes when sick with cancer, because all the other shit that we put up with on a daily basis isn't enough, let's just give her the shits, but not let her shit!!!!!
Constipation is painful, it's like there is a boxing ring inside your stomach and there are 10 fights going on simultaneously and they're all going 100 rounds and the constant heavy and bloated feeling that comes with it, it's just horrible and indescribable really, unless you've had it, it's very hard to explain, the explanation I've just given you is not very good, but it's the best I could come up with at 12.45 am on a Saturday night/Sunday morning.
Then there is the other side, obviously pain relief and treatment outrank constipation, so rather than reduce pain meds or change treatment for the cancer, you need to address the constipation, so the docs have to unclog you, you often end up in hospital in excruciating pain from constipation and then you spend the next 4 or 5 days in hospital trying to crap (they will not discharge you until you poo) , they will fill you full of coloxyl drops (like drinking caramel flavoured cats piss), dulcolax drops, suppositories, enema's, movicol and soooooo much more, eventually you are squirting what feels like liquid nitrogen out of your bunghole and you will frequent the toilet more than any other room, success.......apparently.
You don't get a happy medium or a happy ending, you are either one of two things, bunged up or flowing feverishly.
People don't realise how important it is to have a healthy relationship with your bowels and ensuring that they are treated with the respect they deserve, remember if you don't shit you die, so you've gotta stay on top of that stuff, I say free the bowels, no longer should my predictive text change bowel to vowel when I type (even my iPhone has no respect for the bowels) biwel by mistake, change it to bowel not vowel! I say we should not care about what other people think and if you're lucky enough to have bowels that work, embrace it, feel privileged and proud that you have been blessed with a working poo factory, oh what i'd give to be the person who actually contemplates holding one in because they can't bear the thought of another human being walking into the bathroom mid plop, I say unclench, Poo away, let them plop and plop high!!!! Be proud, you are one lucky son of a bitch, I am more inclined to be the person squatting there willing one out, to no avail, either that or I'm running (well walking at a decent pace or being pushed in my wheelchair) to the closest toilet because of my explosive diarrhoea.
What about those people who go at the same time everyday, like clockwork? How lucky are they? These are not unicorns they do exist and I know a couple of them, one in particular lives with me and they could go 10 times a day, if he/she had the spare time in the day to actually crap that often, I'm jealous, I'm jealous that shitting can come so easily to people and they often don't realise how lucky they are, yes I have a case of the brown eyed monster!
So to those of you who are anally blessed I salute you, I hope you never have to experience the pain or discomfort that is constipation or the opposite that occurs upon trying to rectify the constipation.
Let the plop run free, wear your plop
like a badge of honour, the next time you are in a public restroom and you are lucky enough to actually be pooing, don't wait until the person next to you flushes or runs the tap or leaves the room, do it I say and smile to yourself, be proud that you are one of the chosen ones, you were given this wonderful gift, so use it and use it often!
Free the plop!
Ava my sweet little niece was the gift that we all so desperately needed at a time of the most uncertainty in our lives, but upon the announcement from my brother and his wife that they were expecting their first child, my reaction wasn't exactly that of a thrilled Aunty to be, it was one of dread and fear, my stomach went into knots and I could feel a lump in my throat, (but I thought I had put on a pretty darn good show, at covering up my true feelings about this impending addition to our small, tight knit family, apparently not), my brother later questioned my mum as to why my reaction wasn't very excitable and at that point she didn't know my true feelings either.
The truth is, the first thing that came into my mind was, 'that's it I'm dying, the old one in, one out rule, she'll be born and I'm gonna die' and there was nothing or no-one else who could make me think otherwise.
I had just completed a gruelling cancer treatment regime over the last 8 months, which consisted of an 8 or 9 maybe 10 hour tumour removal surgery, which led to a months stay in hospital with a paralysed stomach problem and I went down to 36 kilos, about 80 pounds, I had also completed 3 months of intense chemotherapies and had another large surgery called a partial distal gastrectomy, so to be told in December, 2 weeks after completing my treatment, that we were expecting a new arrival, I just wasn't in the best frame of mind, I hadn't come to terms with what had happened to me over the past months yet.
For me the mental battle began after the completion of treatment and I actually think it would be quite a common reaction. I mean I'm not saying I didn't have hard emotional times throughout treatment, of course I did, it's just that when you're in active treatment, you feel like your fighting this bastard, you're doing something and you're thrown into this whirlwind of cancer jargon, treatment and everything else cancer related, so quickly, that you don't really have the time or the clarity of mind to sit back and actually absorb it, take it all in and digest it. You're thrown in the deep end without floaties and you can't swim, you're too busy trying to keep your head above water to be thinking about anything else, other than the actual fight. So once you've completed active treatment, that's when the brain kicks in, that's when all of the scary thoughts come.
People are constantly coming up to you after completing treatment and saying "Wow, how good must you be feeling? You've beat this, you won, let's go get pissed to celebrate that you're cancer free"! So what if you look like a bloated bald, eyelashless, eyebrowless cancer creature of the blue lagoon, yeah I really feel like the idea of trying to squeeze into my jeans that have fit me for the last 5 years since I bought them, but now won't even go past my calf since my 7 kilo treatment weight gain, sounds like sooooooo much fun.
For the family, friends and loved ones of the cancer "survivor", a little bit of advice to take on board, your friend, family member, whatever they are, it could be your pet bloody cat with kidney cancer for all I care, they have just been through the wringer, their bodies are either emaciated from chemo sickness or post surgery issues, they may be bloated from all the steroids they consume for sickness (I've told you before, these drugs actually reposition the way you gain weight, completely altering your face and body shape, it's not like normal weight gain, it's actually disfiguring), they will be lethargic beyond description, their muscle's will have turned to jelly, they may be bald, they may be sore, their brains are also like jelly (good old chemo brain, you know that medical phenomena that all chemo patients say they experience, but the medical field still insists there is no proper study or evidence to confirm that it is in fact a problem? Yeah that thing that doesn't really exist, just like Lymes) and this may end up being a long term side effect.
Your friend will be different after cancer, they won't be the same person and their personality will also have changed and you need to allow them to be different, I mean don't let them shit all over you and play the, "but I had cancer card, so we should be watching the notebook tonight, because I don't know if I'm going to live or die and ever get to see Ryan Gosling with his shirt off again card".......no don't put up with that crap, maybe you can once or twice, but anything beyond that, tell your friend to stop using the "C" word as a get out of jail free card and start living.
I can't attest to what it is like getting over the c word or if you ever even really do get over it, because let's face it, I stopped treatment in November and my disease was making its return appearance "METATASTIC GASTRIC SARCOMA: The sequel" in August the next year (symptomatically), so I was still in the "getting my head around it" stage when my tumourous friends returned.
I know for me, in those first few "remission" months, I would still look at people and think, how lucky are you?, you're not bald and fat and might get cancer and die, I would look at people in their 80's and think am I ever going to get to that age? I was still resenting cancer and what it had done to me and my family, friends, loved ones, how it had totally mind raped me and left me powerless, with no apology or regret, it just came in like a tornado that ripped through our lives for 8 months and left all of this devastation and uncertainty in its wake, with not even a sorry, who in the hell does that? Cancer, that's who does that, it sneaks up on you like a stealth missile in the middle of the night and unleashes a barrage of pain in seconds. The words "you have cancer" are ones that will forever ring in a cancer patients ears, whether they survive or it comes back, "you have cancer" will always be sitting there in the dark deserts of your mind, waiting to strike.
The whole 5 year survival thing is another bullshit cancer crap fest, I mean honestly do you think people are idiots? So 5 years after you've been cancer free, you're telling me, any little cancerous cells that may have been left behind and haven't been reactivated within that 5 year period all realise "hey it's the 5 year cancer free NED (No evidence of disease) anniversary today, well time to pack our rucksack and go spread our devastation elsewhere, sayonara", complete and utter bullshit, I apologise to those of you who have had cancer and survived it and truly believe that magic number 5, is when your body just suddenly decides to become immune to cancer. It's just another one of those numbers or statistics that doctors use, it's the 5 year survival rate, so for example they told me that at 5 years there would be a 50/50 chance that I would still be here and something like a stupid 57 % chance if I did chemo, so for 7% chance, I injected toxic sludge into my body over a period of 3 months and the bastard still came back, all for 7%, so that just proves how desperate we are as cancer patients to be cured, that we'd be willing to put our bodies through total annihilation for something that was a totally made up figure (well it was for me, as there were no available statistics about my cancer, as they'd never seen this type before and still haven't seen it since, I know, how unique and special am I?).
So when my brother announced Ava was on her way that December, I resented her, I feared her (good old Irish superstition) and it took me some months to actually get it into my head that it was all superstition and to not be so stupid and embrace it, so I did, I threw myself into making little crafty things for her room, threw the best baby shower with my mum to blow all other baby showers out of the water now and in the future of all baby showers.....did I mention the baby shower was great? Accepted the role of godmother (even though in the back of my head, actually it was still smack bang in the forefront of my head that I may not be around for her, if in fact the physical side of godmotherly duties was ever called into action, what if I die? Is there a sub or a reserve on the sidelines waiting to be tapped in? Do you have to go through the whole service again?) and came up from NSW, a week out of Mariannes (sister in law) due date, to physically be there when the bub was born.
That week leading up to Ava's birth I had the worst UTI's known to man and my stomach felt bloated and sore, going over speed bumps in a carpark killed my insides and the long day at the hospital waiting for Ava to be born, I was wearing 2 pairs of leggings (they're more slimming that way) and I remember the pain of the elastic pressing on my stomach was unbearable, I went into the toilets and took one pair off, still no relief, I walked outside to the outdoor eating area and remember just feeling this immense pain, but not wanting to mention it because my sister in law was in a room down the hall squeezing a watermelon out of her hoo haa, her pain and level of importance of event way outweighed or trumped any discomfort I was feeling that night.
So around 5ish in the evening on August 28th, Ava was born, slam bang in the middle of Mums 19th of August birth date and Dads 6th of September birthdate, she was playing both sides from the moment she was born 😉 I went in and hugged and kissed her and poor Marianne was rushed off to surgery after the birth, it was just Mum, Dad, Steven, myself and this new little perfect addition to our family. In the end I had to leave as I was in so much pain and of course as we know, I held off for another week or so, until I actually collapsed in pain and was forced to see the doctor and told it was back and I was riddled with it.
So you're probably thinking well what was the point of this whole story then, you were right, the cancer came back, the one in, one out rule applies? No, the cancer would have come back whether Ava was born or not, Ava was actually the gift that God gave us to actually get through these last few years, she has made me smile more than any other human, she has loved me unconditionally and without judgement, she is my little sidekick, the ying to my yang and she is also the same to every other family member or friend, she is just a shining light on any cloudy day, her personality fills the room and her love for us is immeasurable, I believe she was put here as our silver lining and for that I am eternally grateful.
I was not given the gift of my own child and I believe that was because my plan was already laid out, I was meant to get cancer and I was meant to die with it and if I had been blessed with kids, I know I wouldn't have been able to cope with this shit show if I had them , so Ava, although she's not mine and I would never try and infiltrate her mother/daughter relationship with Marianne, she is basically like all of our child, she spreads her love and time evenly with all of us and makes us feel special with just a look or a sly comment, she's as witty as get out, as sharp as a tack and the spitting image of her mother and without her I believe our days would be a lot duller.
So my point, Ava was my/our saviour, on many of the days that I was told I was dying or I don't feel like going on, she has come in and just sat with me, from the time she could sit up, she would sit next to me in the hospital bed and put her hand on my belly and just smile, she has clocked up more hours in a hospital than an average registered nurse and still to this day she has not thrown a tantrum.
So my parting words in his blog are to you Ava, you are my sunshine, you are my best bud, you are my little karatespiderava sidekick and without you, our family would not be complete. You complete me x
👁 ❤️U 🤗
Urinary Catheter, a necessary evil, with good intentions.......a light hearted blog for a heavy hearted week ❤️❤️❤️
Aah the Urinary Catheter, just sounds convenient doesn't it? The answer to every lazy man/woman's dreams, the answer to every busy mum who's running around not having the luxury of 30 seconds to sit on the porcelain throne and pee without interruption, imagine never having to pause your favourite TV show again for a pesky pee break, peeing, it takes up so-much-time! Say you urinate the average 6-7 times, lets go with 7 times a day and say you take 30 seconds each time you go (this is solely for urination purposes, I am not going to get into the mysteries that are the bowels tonight, well I haven't planned to, but who knows where this blog could take us?), that works out to be - a total of about 1273.3333 minutes over 365 days, if you live to say 78, that's a total of about 99,319.9974 minutes wasted hovering over a toilet or a urinal, behind a bush, in a pool or wherever else you like to relieve yourself, believe me I'm not here to judge, unless it's illegal, well, then I'm going to judge you, as you should be.
So the thought of having this wonderful time saving device inserted into your urethra, this is one of the few medical procedures I feel that maybe a man would find a tad more uncomfortable than a woman, I mean honestly it's not a pleasant thought is it? (for some reason I have "The eye of the tiger song" playing in my head, with the word tiger replaced by the obvious), having something foreign shoved up that tiny little hole? I bet you're all squeezing your knees together as you read and Steven (my brother), I can just imagine the face you're pulling in disgust at my comments and the dismay you'll be expressing verbally with my lack of gentility and etiquette in relation to this matter, aaw well, it is what it is 😜
It all sounds like a land of unicorns ands leprechauns and yes there is the downside that you have to haul a bag of your pee around for all to judge your water intake but in reality it is a painful, uncomfortable, just asking for an infection, piece of plastic tubing, shoved up your fanny with a balloon on the end (to keep it from falling out).
The first time you get one while you're awake, is all a bit daunting and the awkwardness of having a nurse stare up your hoo haa is never a nice thought either, but it is a necessary evil in some hospital admissions and believe me if you've just gone through a 10 hour abdominal surgery, you'll be glad you don't have to get up and go to the toilet, but they're not the ones I'm talking about, I'm talking about the ones you get when you're awake, not under anaesthetic during surgery.
I sadly have had more urinary catheters than one would like to admit, it's all a bit uncouth really, but I promised you warts and all (thankfully there are no warts to report for me down there 😜) my main reason for getting them now a days, is because of the size of my bladder tumours, they are causing blockages and pushing pressure on the neck of my bladder, so I can't "go" properly or sometimes at all.
In all honesty the whole process, if done correctly, is very easy and not too uncomfortable at all, unless as I said they do it wrong, I my friends have had it done wrong and it's a dark dark 48 hours that I would rather not revisit, EVER!
I'm not going to go into a blow by blow account of how they insert it etc. I'm not a medical dictionary and I feel my description would not be totally correct and let's be honest, probably a bit biased, which would be unfair to the poor catheter, as it really does have its good uses.
My issue at the moment is, I find after about 72 hours of having a catheter in, they start to become uncomfortable, even traumatised if you will? I've also had an incident that my urethra was left traumatised, I knelt up on the bed on top of my catheter tube and needless to say the whole thing yanked out and let's just say I didn't walk or pee right for at least 3 days.
Catheter's are sadly not natural to the body, so the body often rejects them by way of introducing infection to get rid of it, so the doc's usually don't like leaving them in for extended periods of time anyway, actually speaking of "periods", don't be alarmed if you're a woman and your period starts when you have a catheter inserted, it's actually quite common, just a fast fact for you 😜
I don't know how long this will stay in, the last I was told was indefinitely, well no thank-you, I see your "indefinitely" and raise it with a "definitely", I want it out and I want it out yesterday. It will be reviewed tomorrow by the palliative care doc, so we'll see what happens (fingers crossed).
So in short Catheters are certainly handy, they serve a great purpose, they don't hurt as much as you would imagine when your getting it in or out for that matter, they pop the little ballon before taking it out and it slides right out (I know, I know tmi, well stop reading if it's too much for you lol), they are great little inventions, just not a long term one for me.
So sadly for those of you, who feel a commercial catheter would be a God send, I shall have to burst your catheter bubble (pun was definitely intended), I don't foresee Johnson and Johnson releasing the "convenient catheter compact" any time soon, so for now, mothers you have many more years of little hands sliding under toilet doors and kids asking for a toilet break on the 10 minute trip to the local supermarket and let's be honest as pleasant as it sounds to never have to physically get up and pee again, something like an adult diaper just doesn't appeal to me either.
So to you my fellow terminally fabulous people's, may you pee long and prosper, I'm keeping my fingers and toes crossed that my pee will one day again run free, as nature intended it.
By the way, I started this blog in the middle of the night and just finished it upon waking this morning (the next day) and the amazing outpouring of support for "3 for Lisa" is amazing, you people far and wide never cease to amaze me. I feel with this army that we are growing, we'll be able to hold position, just a little longer than I had expected a few days ago, I actually see myself getting out (hoping) of hospital, rather than dying in it........gees I promised this would be light hearted.......did you know that the blue whale is known to have the largest penis at an average length of 13 feet (4 metres) to 15 feet (4.6 metres), with an average diameter of 12 inches (30 cm) to 14 inches (36 cm), no wonder the sperm whale is the second recorded loudest mammal, it's probably screaming at the thought of bumping into a random Blue whales appendage on its leisurely Sunday swim.
Love you people's, keep your chin up and your positivity coming. Thank-you all for your love, support and guidance, now go and have a nice long pee, you deserve one after all of that 🚽
So it's been over a week since I found out that the radiation didn't work this time and the words "you should have died when you were last admitted to hospital", came out of my oncologists mouth. Fast forward to now and here I am in palliative care, barely able to breathe, due to the pain from my liver tumours pressing on my diaphragm.
We have changed my meds once again and the one thing I desperately want to go away, is the inability to breathe properly, it is still here and I am begging all of the gods to take this and my liver pain away, but when do I come to the point of acceptance? When do things get so bad that I finally let it take me? Writing this now makes me want to sob, uncontrollably, people say "you'll be in a better place, pain free, we're the ones left behind having to deal with getting our heads all around this", well you know what I don't wanna be in a better place, I like right where I am thank-you, well not in palliative care at the hospital, but when I'm at home, playing with my niece or making dinner, I really love those things, the simple things. I'm not ready, I AM NOT READY!!!! You stare death in the face and see how you feel.
As I sit here typing this blog, yet another sobbing relative has retreated to the palliative ward hallway, are they crying from fear? Are they crying from seeing their loved one in so much pain? Or are they crying because their loved one has finally passed and what do I do? I put my headphones in and turn the music up, well what else do I do? Do I sit and listen to their pain and make myself feel worse (yes I know it's not about me, a poor family has just lost their loved one and I'm trying to protect myself) or do I listen and let their fear and sadness consume me and in turn make me even more scared. I choose to drown it out, I'm sorry if that's cold, but I just can't deal with the reality of it all. So I do understand that for those left behind, it is incredibly hard and I understand why they would think that it's harder on them than it is on me, but imagine not being around. Imagine not being there for the little things in life, never mind the big things.
Basically this whole "SHITuation" is exactly that, shit!
I still can't believe that the immunotherapy that I spent $7000.00 every 3 weeks for four times has wrecked my lungs and it could quite possibly be my lungs that kill me, not the actual cancer! So I'm pissed off, I'm pissed off that I actually paid for the possibility of an earlier demise, I paid for this shit to be injected into my veins and it not only damaged my lungs, but it also made my tumours grow faster and larger! Yes I'm resenting it and I know if I hadn't done it, I would have always asked "what if?", so I had to do it. I also don't want to dissuade people from trying Keytruda/pembrolizumab, it is an amazing drug with proven results, but for me, sadly I feel it has increased my tumour growth rate and size, the old "you're damned if you do and you're damned if you don't situation.
I had a meeting with the palliative doctor yesterday (he's not my regular oncologist) and he basically said my disease had progressed "rapidly" and that's another frightening word, I then rang my oncologist and asked him and he said exactly the same as the palliative doctor, except he used the words that this is shit, there's that word again, they should change the word cancer to shit!
I'm not ready yet, I don't want to go, no matter how much fun it is on the other side and the thought of partying with both Prince and Princess Diana at the same time thrills me, I'd still rather be playing dolls with my niece, down here on earth in our little lounge room .
I want to thank you all for your love and support and I am hoping and praying that you will all be reading another blog from me soon.
Stay fabulous people x✌🏼️
Today has been hard, today has been scary, today has been the day from hell, but today is not unique, I have had days like these before, maybe in a different state, in a different doctors office, but the message was exactly the same, "the treatment has not worked, your tumours have grown and there's not really anywhere we can go from here".
When I was first told my cancer was back in September 2013, I was told I'd have weeks maybe months, so I did what any sensible human being does upon hearing this news, I ignored it, no I didn't ignore the fact my cancer was back and it was terminal, but I ignored the weeks or months part and for the most part it's worked for me. Since my cancers return, no treatment has ever really worked, but it's maybe given me a month here or there and those months add up after a while.
In between now and then if you've read my previous blogs you would know I've tried numerous therapies and surgeries and each one gave us a little hope for a little while, but inevitably my little army of tumours would march themselves back in to my body and begin to invade again.
November 2014 was the biggest fright of all, I had been in hospital that week with a suspected tumour bleed and the day of my return home from hospital, I was still experiencing pain, but it was bearable. I remember walking from the lounge room, I was slouching from the pain, I slowly walked into my bedroom and then it hit, like a thousand shards of hot molten glass to my upper abdomen, I fell to the bedroom floor trying to scream, but couldn't from the sheer agony of what my body was going through, I couldn't breath from the pain, my partner at the time and mum rushed to help me, but they could tell they're was nothing they could do, we had to call the ambulance.
I don't know the total amount of time it took for the ambulance to arrive, but if it was 10 minutes it felt like 10 hours, the paramedics rushed into the bedroom and immediately cannulated me and started pumping the morphine in, nothing would improve my pain levels, they then discussed whether to administer ketamine (a drug commonly used by doctors or veterinarians as an anaesthetic), luckily for me (for reasons which you will find out later in my story) my cancer type didn't allow me to have this drug. For those of you who don't know me personally I am barely 5ft tall and at the time I was only about 40 kgs (88 lbs), so it didn't take much morphine to send me into a very sleepy state, but they kept pumping the stuff into me.
By the time I arrived at the hospital I was still in enormous pain, even though I had enough morphine in my system to knock an entire football team out. Next thing I remember was everyone rallying around me calling out my name and that was the time I nearly died, (lucky I couldn't have that ketamine) I had so much morphine in my system that I had overdosed. I was told my eyes rolled into the back of my head and that was it, but I came back around.
That night my left foot stopped working because of my pelvic tumours pressing on nerves, at one point I tried to stand up and just fell to the ground,my bladder stopped working for the same reason and I just remember being hunched up in a ball in a hospital room with friends and family members coming from all over the place at all hours of the night. I kept asking was I dying and nobody would say yes, that was of course if they could understand what I was asking, as I was talking incoherent babble due to the amount of morphine in my system. I would start weird conversations in my head and then answer myself out loud, much to the fear of those around me. I'm sure under any normal circumstances my behaviour would have been recorded and submitted to The Ellen show, but because of the seriousness of the situation we couldn't enjoy the comedy gold that was the one woman act, for one night only, the Lisa's dying, but gees she's funny on morphine show, we can look back now and have a laugh. I just wish someone had the foresight to record it, stuff time and a place, for future reference, if I am ever high on any pain meds like that again, pull that phone out and hit record, I wanna see that shit!
That night was a long one, that weekend was even longer, I had radiation for the first time and it was to try to stop my tumour bleed, that was it, not to reduce tumour size or anything like that, simply as a palliative measure. I didn't know it at the time, but the doctors didn't think I'd make it through that night, then they didn't think I'd make it through the weekend, they even brought the priest in, but I rallied and was visited by palliative nurses who told me I probably wouldn't see another Christmas (we were in November). Considering you're now reading this, you obviously know I made it to Christmas that year and the one after that, for some reason my tumours reacted to the radiation and some actually died, others shrunk and my overall disease reduced dramatically.
I've had a few other occasions in between now and then that I've been told weeks, not months, but each time I managed to pull a little miracle out of my ass.
Leading up to this recent scan, I've been experiencing more pain and I've been regurgitating a lot of my food, which I know means some of my stomach tumours have grown and are starting to cause blockages, so I sort of had a bad feeling that the news I was going to receive today wasn't going to be fabulous, but you're never quite prepared to hear those words, no matter how many times I've heard them before, it always feels like the first time, the oncologist grabs you by the hair and slams your face to his knee and then he proceeds to kick you while you're down and repeatedly stomps on your head, all the while everyone in the room doesn't know how to behave.
The poor oncologist delivering the deadly blow, often doesn't quite know where to look or is it me that doesn't quite know where to look? Sort of like that awkward stage when you like a guy and you both do that coy "I'm looking at you, not really, but I am looking at you look", you know the one, well when an oncologist is telling you things don't look great it's kind of like that.
Today there was my oncologist, myself and my mum in the room, my mum was sitting to the left of me, slightly behind me, so out of eye contact and my oncologist was sitting in front of me, but when he's delivering the "things aren't looking great speech", it's as if we're all in different corners of the globe, we're in the same small office, but we couldn't feel any further away from each other. I look in every direction, up, down, sideways, peek at mum, tap the desk, play with my oncologists mousepad, I look everywhere but in anybody's eyes, because if I have direct eye contact, I might just break down and I can't do that, I can't let myself cry, I've cried too many tears over this bastard already and I also wore mascara today that isn't waterproof, so I couldn't let it happen.
I often wonder is there a class that doctors have to take on how to inform a patient that they're dying, do they actually feel anything when they're saying it? If they do feel sad when they're saying it, does it ever get any easier? We spend so much time thinking about ourselves and how we react to hearing the words, that we forget that there's a whole other human being on the other side of the desk delivering the death blow.
The car ride home is never fun either, Mum and I get in the car and we sort of debrief and give each other our versions of what we think was said in the meeting, even though you're in the same room, hearing the same words, you will always have a difference of opinion as to what was actually said. It's funny how human beings can comprehend the exact same words completely differently to each other. I'll tell Mum she needs to let me have the shits at the situation for a while, I'll say the f word, followed by the c word (yep carrot), followed by the f word again and so on and then I'll start to make my phone calls to people, informing them of the shit news and i'll say it all pretty matter of factly, tell them I'm not in the mood to talk about it yet and by that point I'm home.
We actually went and watched a movie after the news today and I was into it for about the first hour, but after that it's a blur, so I'm sorry I can't give you a proper review of "Mothers Day", as I was non compos mentis for half of it.
The rest of today is a series of numb, strange exchanges, tonnes of people messaging or calling, because they care and that's lovely, but I never feel like talking the "day of". Today is a blur, I look at random people and think why me and not you? You're watching the same movie as me and the biggest worry you have is where you'll have dinner after it, while I'm sitting hear trying to digest the fact that I'm dying again, no shrinkage this time, not stable disease, no little miracle pulled out of my ass, no, this time, I have to face the reality again of what "terminal" actually means. What's so special about you that you get to live and I don't? Why me? I don't ask why me very often and tomorrow I'll regret that I even let myself go there, even if it was just for a minute, but today is a "Why Me Day?" and I suppose we're all entitled to one every now and then.
If Bridget Jones thought she had issues dating, then imagine dating when you have terminal cancer. I have the same issues Bridget had, that bee stung bloated face (although I think that's more Renée Zellweger's face than character acting), granny undies way outweigh lacy Victoria secret underwear in my drawer, wine is my main form of hydration and I suffer from chronic verbal diarrhoea, if there's something inappropriate to be said, I am
the one who will say it, just ask any of my friends or family, I have no filter and nor do I intend to start filtering what I say, stuff it I have terminal cancer, if I wanna say something I'll say it and I'll deal with the nuclear fallout later.
I am a 34 year old woman who has recently separated from my long term partner of nearly 14 years, I say recently, really it was June last year, but we've continued to communicate since maybe 8 weeks after breaking up.
Breaking up was a difficult decision to make, he and I had been together since I was 19 turning 20, he came into my life at a very uncertain time for me. My parents and brother (my only family in Australia) were moving back to Ireland and I was moving out of home for the first time. I had to become an adult over night, I mean I had done laundry, cooked dinners and washed dishes, but I'd never had to pay for my clothes that I had to wash, I never had to pay for the steak that I cooked and I certainly never had to pay for the electricity or water usage to do the dishes, so I suppose you could say I met my ex partner at a time that I was confused and very unsure about my future.
He was suave, had a secure job, a quirky/wicked sense of humour, made my heart jump and my face would turn red when I would see him, but there was one thing that I would say most people noticed first, he was older and when I say older, A LOT older and if I'm honest he brought more baggage with him than Kim Kardashian would on a one week trip to New York fashion week, but I fell in love, I loved his confidence, which I would probably now categorise as ego.
Anyway I'm not going to get into the ups, downs and sideways of our long long long relationship, but I can say, for all the faults there were in our relationship, from both sides, from the time I was initially diagnosed with cancer and the time I was told it had come back, he was there, by my side at every moment, every meeting, every treatment, every surgery, every toxic vomit, when my hair started to fall out we shared the hair shaving duties with his electric razor, he was the one who would make my gluten free bacon and egg rolls when I was on Chemo at any hour of the night, if I wanted it at 3.30am he would get up and do it, so I could never complain or say a bad word about his commitment to caring for me while I was and consequently have been sick. Sadly though he and I just didn't work cohesively as a couple, we didn't for a long time and when the cancer came initially, we were actually at a crossroads for a reason that he knows about and I don't need to go in to, but let's just say when this ugly C word raised its head, we were already in an unstable position, but I got Cancer and those other problems got swept under the rug.
Here we are today and I have absolutely no desire to be in a relationship, I don't know if it's because of my previous relationship or if it's because my libido is non existent due to my hormones being everywhere from the myriad of treatments I've had, but I can honestly say that a relationship, a quicky in a best western, a swipe right on tinder or a drunken kiss in a nightclub, is absolutely the last thing on my mind.
I know there are many men and women who have a chronic illness or a terminal disease out there that still have a desire to love and be loved, I'm just not one of them, well I'm not at the moment anyway and I often wonder if I was, how would one broach the subject? So you're at a bar and a guy approaches you and asks to buy you a drink, do you blurt it out mid drink invitation?, Do you wait until after your first sip? Do you wait until you're finished the drink or do you wait until you're 3 sheets to the wind and then admit that you're expiring as you speak or just not tell them at all? What is the terminal disease admission etiquette? Just like you single mothers and fathers out there, I'm sure you've all grappled with the "when do you drop the I have a kid bomb?".
I'm sure diving back into the dating pool at my age already has its challenges, like for me I suppose if the cancer didn't exist, men would probably be thinking, Why? why are you still single at this age? Haven't you been married by now.......at least once? Don't you have a kid? What's wrong with you that you've reached your mid thirties and no-one, NO-ONE has thought enough of you to at least get you pregnant?
Then there's the old "are you married?" chestnut that you're inevitably asked when you're at treatment or admitted to hospital. Apparently once you hit 30 it is abnormal to not be married or at least divorced, well excuse me if I like being abnormal, I'm choosing me at the moment and to be honest even if I didn't have the big C, I still think I would have broken up with my partner and I'd be in the exact same position, but not dying.
I am obviously in the minority when it comes to wanting to be single and alone and not dating, because all you have to do is look at the amount of dating sites there are on google or the amount of dating site ads on TV and the fact that these dating websites are now subgrouped and so specific, like Ashley Madison.......married who cares, looking for that like minded Christian that wants to be chaste until your honeymoon, go to chrisitianconnection.com, love your dog like they're your daughter and not your pet, why not go to animalpeople.com? Are you tall and looking for that equally vertically unchallenged soulmate, go to tallfriends.com, I could go on and on, but here's two more and I must admit my favourite of the most specific dating sites, they're so good I can't decide which one wins the "most uniquely unambiguous of all dating sites ever created", if you're into "furry fandom", dressing up and behaving like an animal of some sort, fear not your perfect furry friend is waiting for you at furrymate.com or for those of you who really are big kids at heart and love wearing nappies, don't despair you too can also find your nappy wearing soulmate at diapermates.com. Whatever happened to plain old RSVP? Where you find out that the guy you've met online has a diaper fetish the traditional way, by snooping through his wardrobes when he's popped out to pick up your Chinese takeaway, I mean have we become that lazy that we can't even do our own vetting? People, finding out these wonderfully out there things about the person you're dating is half the fun of dating!
I suppose if the guy doesn't want a long term thing, then I might be in with a chance, what with my rapidly approaching expiration date and all?
So for now I'm happy the way things are, just me, myself and I, eventually when someone has created "terminal tinder" (note to self: copyright terminal tinder) maybe I'll be ready to swipe right, but will someone swipe right for me?
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.