This is a long one people, better put the kettle on.
A large part of any cancer patients life is treatment, when you're first diagnosed the first question you ask is most likely "Am I going to die?" and I'd say the second would be "Ok so where to from here? What treatment? Am I going to have to have Chemo?", well that's what my questions were, actually if I'm completely honest, after the "am I going to die question?" (the first time I was told I had cancer), my next question was "am I going to lose my hair?" effectively meaning, I thought, am I going to have to have Chemo?
My hair was my crowning glory, from the age of 15, I had long lusciously thick dark brown hair, yes it may have been a chemical reproduction for a few years near the end there (I started to go grey at 18), but the hair itself was mine, I was never the tall girl, I was never the thin girl, I was never the hot girl, I was always the short girl with long hair, the long hair was my thing, it was at that stage in my life that I believed my hair to be my only redeeming feature looks wise.
So my first thought was am I going to lose it, now I don't know if this is something all oncologists say, but three different oncologist's have told me during different chemotherapy treatments that there is a "chance" I may lose my hair, none of them ever really confirmed it for me, which in my opinion is way worse, just tell me, don't give me this false hope that I may fall in the 1.5 percentile bracket of people who don't lose their hair using a particular Chemo. Of course the first thing we do when we walk out of that consultation is google the drug and it doesn't just say hair "thinning", it says hair "loss", so just afford us the decency and at least say you're most likely going to lose your hair, because this false hope crap is pointless, maybe other oncologist's are more straight forward with their patients, but mine certainly weren't when it came to treatment symptoms.
When it comes to treatment for some reason I feel I've sort of gotten off lightly, I hear of these people who are on chemo for a year and do 100 radiotherapy sessions and I think I've been pretty lucky.
My first chemotherapy was a combination of two chemo drugs called doxorubicin and ifosfamide, I would go into the chemo day ward, where a nurse (dressed up like she was in an Ebola quarantine ward), would cannulate you and hook you up to the toxic "life saver", then I'd sit for 8 hours having this red thick liquid, followed by a clear one, pumped into my veins, then be wheel chaired, usually by this stage with a sick bag in hand, vomiting, to the cancer ward at St Vincent's in Sydney. I remember the first time I went into the ward, there were four beds in each room, there was a woman in the bed next to me and she looked like she was minutes away from passing, skeletal skinny, ghostly pale and just lying there in a vegetative state, this of course boost my morale right up! I would then stay in the hospital for 72 hours, receiving chemotherapy for the first 48 (by the way the woman on deaths doorstep in the bed next to me, was up and about the next day like a sprightly rabbit) and then I was monitored to make sure my liver and kidneys wouldn't fail for the next 24 hours, then go home.
The first 3 days in hospital after treatment weren't really the worst, a bit of vomiting, a heavy head and a lot of sleeping, it was the days after for about a week or two that were hardest, a constant feeling of nausea without relief, a tiredness that words cannot describe, a constant stale taste in your mouth, mouth ulcers, body and bone aches from a needle that you get to make your white cells grow back faster, bloating, constipation to diarrhoea, weight gain or weight loss (I gained 7 kilos, during my first chemo), rashes, loss of taste, your nails begin to rot away in front of your eyes, many people lose their nails during treatment, luckily for me, mine just sort of disintegrated but remained (if that makes sense), depression and what a lot of people don't know is, when you start to lose your hair, it actually hurts, your head aches at every hair cuticle, if you lie down on a pillow your head pounds with pain and the weight of your hair pulling on the cuticle is sheer agony, so as soon as my hair started to come out in clumps, I cut it and shaved it off, it was the best decision I ever made, because as soon as I shaved it, the headaches and pain went, so I highly recommend not putting up with it, just get rid of it, honestly you'll thank me in the long run. By the third cycle of treatment if your chemo does in fact cause hair loss (not all chemo causes hair loss, something I didn't know until I had cancer), you will have most likely have lost ALL of your hair, yes down there, front, back and sides, eyelashes and eyebrows (this is the worst one, it gives you that lovely alienesque look, people look at you and can't quite figure out what it is that doesn't look right, yeah they get it, you're bald, but there's something else that just doesn't look right, well it's the lack of eyebrows and eyelashes), the only place I didn't lose hair was my arms, the one place I would have loved, the arm hair did turn white in colour, but never fell out.
I've described before that chemo is like having the worst hangover you could possibly ever imagine everyday for nearly 3 weeks, combined with going on the amusement park ride the Gravitron, the circular one that you stand with your back to the wall and the ride spins in a circular motion for what seems like an endless amount of time and when you get off you don't know if you want to be sick or literally end your life there and then due to the motion sickness, these two things combined x 1000 and there you have an apt description of chemo side effects and then when you finally start to feel sub-human again you have to skull another 10 bottles of tequila hop back on the Gravitron and on day 22 the carrousel of chemo side effects begin again.
You are also classed as cytotoxic when you're on chemotherapy, meaning if you vomit, you are effectively spewing toxic sewage harmful to everyone within a 1 metre radius of you (ok so I don't know exact measurements, but you get the drift), so it needs to be cleaned up wearing special gloves and the sick needs to be disposed of in a special bag, so that you don't unintentionally give someone toxic poisoning.
Within a few days you are also classed as "immuno compromised" your white blood cells drop to buggary, leaving you open to any infection, cold or sniffle going and if you get a temp above 38, they admit you to hospital and put you on intravenous antibiotics and fluids, as a simple cold can kill you, when you have no protection from your immune system, you may become neutropenic, meaning you have absolutely no protection from any sickness or illness, this is why you sometimes see cancer patients wearing masks, as they may be neutropenic and trying to protect themselves from a cold or flu that could actually kill them.
Chemo Brain, when on treatment and after treatment for many, you suffer from chemo brain or chemo fog, cognitive impairment, the "experts" say there is no proof blah blah blah, well until those "experts" have actually had chemo I refute your no evidence finding, just talk to any person whose ever actually had chemo, that should be evidence enough. Words no longer pop into my head like they used to, I have to sit and think about it for a minute first, I couldn't tell you the amount of times I say "what's that word?" in a day, it has stayed with me after treatment, I constantly feel like I have this thick cloud over my head, crosswords and quiz shows scare me now and I once went on the TV show Wheel of Fortune, I was always good with words and spelling. Not now, it takes real effort, just doing these blogs takes me hours, where before it would have taken me 1/2 an hour to write, edit and post, now it's a full on effort, taking sometimes up to 10 hours over a few days. You'll forget simple everyday things, like, you'll ask someone to pass you the salt, but you won't be able to remember the word salt and you'll end up just pointing at it and pretending to put salt on your meal until someone understands your charade and they pass you the salt.
Menopause!!!!! Let the hot flushes and night sweats begin, I'm 34 and as previously mentioned I have now been menopausal 4 times, it's not enough to go through it once, let's take it away, give it back, take it away and so on and so on. Menopause is not fun, hot flushes come on at any time, basically a sea of sweat just bursts from every pore in your body, one second you're a perfectly respectable looking human being and the next you look like you've been dunked in a bucket of stinky sticky sweat with a bright red face to match, not even a nice gentle glow, you're a bloody beetroot! The night sweats add to the fact that you're already probably not sleeping well because of the steroids they pump into you when your on active treatment, you'll be lying in bed in the middle of winter and the next thing it's boiling hot and your drenched once again from head to toe, I can't count the amount of times I've had to actually get out of bed and change my sheets and pyjamas because of night sweats.
Stop reading for the next paragraph Mum, Dad and any family member!
Sex drive ↘️↘️↘️⬇️⬇️⬇️, sorry what's that again? I obviously can't speak for everybody, but for me it's non existent, I'm at a point in a woman's life where sex is apparently it's best and I would rather be sitting crocheting with a cup of hot chocolate than actually have to take my pants off, I told you warts and all. I'm including this because it's important, so that if you're currently going through treatment and are in a relationship and probably feeling guilty, because you're already toxic and certain things are already ruled out for safety reasons, then throw on top of that your hormones are going berserk, there's also some physical set backs (I'm not going into it, but there are), the last thing you want to do is put some Barry White on the iPhone and get some bowchikawowwow action going, so please don't feel guilty, if your partner doesn't quite get it, explain it to him and if he still doesn't get it, tell him to read this blog and if he still doesn't get it, well you're stuffed.
You would also think that the more chemo you have the easier it gets, in fact this is the opposite, the more chemo you have the more it builds up in your system and the more sick you get, then you get the chemo anxiety nausea, you start to actually feel sick before you even start the chemo, this is a very common thing that happens to chemo patients, the thought of the chemo induces your nausea, throw in the fact that if you don't have a port (a small catheter under your skin in the chest, connected to a vein, a cannula is then attached to the port via a needle when being treated), your veins begin to collapse, so cannulating for treatment becomes near impossible and it could take 4 or 5 attempts to finally get one in, so then you also get cannula anxiety, oh the joys.
I've also had other types of chemo during my time, I've had four different types in fact, one was called gemcitabine and docetaxel, this one caused me to lose my hair for a second time (once again the oncologist said there would be hair thinning, not loss), it caused blood clots, so I would have daily heparin injections in my leg or stomach, it also caused burning in the veins, basically causing burns on my skin from inside out, my hands and wrists were especially burnt and painful during that treatment and I had nerve pain in my hands, I couldn't really grip onto anything without pain, for the burning and rashes, I found MooGoo creams to be brilliant, they have a huge range and are available in most chemists or you can purchase it online directly from moogoo.com.au (no I am not being payed for this endorsement, but yeah I'd like to be 😜), it definitely eased my burning and itching and unlike many other creams you use when being treated, it actually smells nice, not like a newly bleached hospital toilet, as so many of the other creams do.
I'm sorry to any of you out there that perhaps googled chemo side effects and happened across my blog, looking for some positives and making the thought of chemo more bearable for you, but the truth of the matter is, there is no good side to chemo, apart from the fact that it may aid in your beating of the disease, it's a shit show from beginning to end and once you've actually competed treatment, people don't understand it takes months to years for the body to reboot, it's just been through the biggest war ever and a bit of ptsd should be expected, not to mention the long term effects that many are left with for life, some people suffer from nerve damage and are in constant discomfort once completing treatment, then there's infertility, osteoporosis, liver problems, lung disease and the list goes on.
So to sum it all up Chemo is SHITTY, the end!
Just a a prewarning relating to this blog, it is slightly different to my normal blog, this one I am airing a grievance that has just annoyed me again this evening, so I felt I had to write about it, I've said from the start, this blog will be a warts and all. I've had a few people read it and they're undecided on different parts of it, so I'll let you be the judge. I hope you lean towards the enjoying side of it more than the disliking side of it.........enjoy x
Something I've noticed over the years is a common question I get from people after telling them I have terminal cancer, besides the obvious "What type of cancer is it?" one, a question that would definitely be in my top 4 of frequently asked questions of a female cancer patient in her 30's is "Do you have kids?" and when I respond no, they often respond with something along the lines of "Aaw it's probably a good thing, at least you don't have to worry about that" or I've been told it's a blessing, as I wouldn't need that extra stress of worrying about their wellbeing, it's also accompanied by a sort of disappointed look, a head tilt and a change in tone of voice, like a gentle soothing "there there" voice.
This may sound stupid or that I'm overanalysing it, but when I get asked that question, as I inevitably do, I get a knot in my stomach and feel that I'm somewhat unworthy, that I haven't achieved the right things in life. I feel like the woman who has 3 children in the bed next to me with terminal cancer would deserve the better homes and garden renovation more than me, because she will be leaving a husband and children behind, I'll be leaving a Chanel handbag and a few pairs of louboutins, who cares about my parents losing a child or my loved ones losing me, they don't matter.
The truth of the matter is that Cancer basically took away that option, my treatments have put me into a menopausal state 3 times now, the closest I get to a tampon these days, is aisle 12 at woollies.
This got me thinking, this must be a common thing for all those beautiful women out there, yeah I'm talking to you, the ones who are single, you would definitely get the head tilt, the ones that have been in long term relationships and still haven't got a ring on it, the ones who are in a relationship and have tried desperately to fall pregnant and haven't or sadly have and lost.
What is it about us human beings, that we feel we have the right to judge others on their marital, parental and even employment status? I am a 34 year old unmarried, unemployed, childless woman, I have really broken the glass ceiling, those judgmental Judy's out there must love it when they start firing their questions at me, I am the "well things could be worse, I could be Lisa" person.
Why should we be made to feel like subpar human beings? So what we didn't get married (hey there's still time yet), maybe I'm infertile, did you ever think about that when you ask that question, I have many friends who have struggled terribly with falling pregnant and I feel horrible for them when people ask about kids, I know people aren't asking these questions out of malice, it's in general interest and often care, I just think people need to gauge their audience better, maybe think before you ask.
Have you ever stopped and thought that maybe........just maybe, it's an actual lifestyle choice, maybe my 34 year old friend loves being single, going out to a club and dancing all night and crawling into bed at 6am in the morning and she might just might be crawling into bed with someone else, that she may or may not have just met in the kebab shop on the way home (this is purely fictional, so for my single friends out there, I am not talking about you). Have you ever stopped to think that your friends, that have been married for 15 years, with 2 dogs called Will and Grace and a parakeet named poopsy, have chosen not to procreate, they'd prefer to put potential school fees into that European trip they're doing first class return next August?
There are so many different types of people out there, different relationships, different ideals, no person should ever be made to feel less worthy than the next, just because they haven't achieved what society believe's is the norm, we're in the era of the new norm. I mean seriously when Bruce Jenner was winning gold in the Decathlon in 1976, I really don't believe anyone would have envisaged that some 40 years later she'd be called Caitlyn and winning Glamour Magazine Woman of the Year, surely if Caitlyn Jenner can be crowned Woman of the year (You go girl ✊🏼) we can accept that a woman in her thirties has not procreated.
So to all of you out there that don't fit snugly into the box that is "normality", I salute you, keep living "your" life, yes that's right "your" life. The next time someone asks me that question,? I don't think I'll feel the knot in my stomach like I used to, I think I'll just embrace it and accept that it is really a perfectly reasonable question, it's just the pity parade that comes with it that doesn't sit well with me, so I'll just ignore that part and then maybe ask them if they prefer it on top or on the bottom? 😜✌🏼️
On that note, I'm off to bed, 2am rolled around quickly ⏳
Ps. Any views expressed in my blog are not meant to offend or insult, I hope that people can take my blog in the light hearted manner it was intended.
"Hello.......it's back", three words that no mother of a child that's had cancer, ever wants to hear, well on the 5th of September 2013, that's the phone call that my mum received from me, from my car, in a random carpark, at a random imaging centre on the Gold Coast. 8 days after the birth of her first grandchild and 1 day before my Dad's 50th birthday and birthday party, timing is never good when it comes to this, but the timing really couldn't have been much worse.
I had been experiencing horrendous pain in the lead up to the birth of my niece Ava, on the day of the birth I remember having to remove my leggings as they felt like they were strangling my stomach and bladder, days after I remember being in the car with my brother and going over speed humps in a carpark and asking him "Are these speed humps not hurting your stomach, driving over them?", anyway I persisted and then went away for a couple of days with my partner to the Gold Coast, after Ava's birth. I remember he had gone to the chemist across from the hotel for me and I collapsed in a ball of pain in the hotel room, the pain only lasted minutes, but it was bad and I knew it.
When Paul (my then partner) returned he insisted that I visit a doctor (he'd been insisting the entire week), so I relented, we rang around, found a doctor and he got me in for an ultrasound straight away, the doctor had actually put my mind at ease as he thought it was perhaps a surgical hernia, he didn't think it felt like a tumour, I even rang my mum and told her the doctors thoughts, in between the doctor appointment and the ultrasound to allay her own fears.
As I was lying there, the ultrasound technician, asking where I was from and general chit chat, I noticed she was taking a rather long time to find what should be as straight forward as a hernia, she added more gel and the field of the ultrasound started to get bigger and certain parts that she was pressing on would cause me to recoil in pain and she'd apologise. Then I saw it, that look, the look i'd seen before, the "I know what this is look, but I'm not allowed to tell you what it is, that's up to your doctor look", the "I'd hate to be you look" and like the first time, the technician excused herself, I popped my head out the door and signalled to Paul that it didn't look good, but he was distracted by another waiting patient chatting, so I returned to the bed and then the technician and a doctor came in and on this occasion they just came out and said it, they afforded me the dignity of letting me know my cancer was back before the doctor, subsequently avoiding the stress of waiting 24 hours to hear from the doctor on the Gold Coast (the doctor's receptionist actually took 24 hours to call me and request a follow up appointment about my results, a follow up appointment! 24 hours after the scan and then she said I wouldn't be able to see him until the Monday, this now being the Friday, how kind of them to intentionally make me wait 90 something hours to find out my cancer was back...........this may not read as sarcasm, but it's meant too).
How did you feel when you found out it was back? This is a question I've asked a few friends and family to answer for me for the blog, so I suppose I should answer it first............Pain, immense pain, a pounding in my chest, a ringing in my ears, a lump the size of Gibraltar in my throat, everything was just white noise, incurable being repeated in my head, because that's what my Oncologist said in initial treatment, if it comes back, you're incurable, my mind didn't even go into survival mode, like it normally would, it went into fear mode, something I'm not used to, I make plans, I make plans in case plans about plans about plans fail, there is always a back up plan, well not now, I have no control over this, I cannot change it, death, funerals, what will my loved ones do? I'm not going to see Ava go to school, get married, thoughts just flood you, overwhelming thoughts of death and how much longer do I have? There is no way to describe how a person truly feels upon hearing this news, it's an out of body experience, a mind numbing is this really happening? experience.
I came out, crying, so Paul surmised it was back, he started crying, reception bulk billed (paid by the government) the scan, so I didn't need to worry about that on top of everything else and I rang my doctor in Sydney to let them know, as they were closing in minutes, so I could organise an action plan and then there I was sitting in the carpark on the other end of the phone call that I never wanted to have to make.
I asked my Mum to tell me her experience, in her own words, in her own way, I want this blog to give different perspectives, because at the end of the day, it's not all about me, cancer effects everyone around you and I hope her perspective may help someone else's Mum or Dad out there, who sadly may be at the receiving end of that telephone call or may have already received it.
Thinking back to how I originally felt when Lisa was diagnosed with terminal cancer my first reaction was to go into grieving mode.
I was haunted by thoughts of death and many questions went through my mind; what did Lisa want at the end? How were we going to bury our own daughter? How would our life be without our daughter? What would we answer when people asked how many children we had? Why Lisa and why not me and how in Gods name were we going to get through this?
Sleep was impossible, as my mind wouldn't let me rest. My heart was so sore and my days were blurred.
There were days when the treatment was so harsh that I just wanted the suffering to end, but then I'd remind myself that the only way this could happen was death. I'd arrive at the hospital and be numb with fear worrying about what lay ahead.
Many times I sat in the hospital treatment room feeling like an observer, looking in on a situation that couldn't be real. Surgeries were especially tough for me, as Lisa was wheeled away I would go weak at the knees until she returned to her room. The days following surgery would be hell. Our beautiful, gorgeous girl would be so sick, weighing 35kgs/ 78 lbs/ 5.5 st, whatever way you say it, she looked like she had nothing left to fight with.
One morning I woke up with the realisation that I was living life like Lisa had already passed. I was posting all these positive quotes filled with hope on Facebook, but they were for Lisas benefit, I didn't truly believe them. I decided there and then that my head was going to protect my heart. I would make the most of the good days and do my best to support Lisa on the bad days. This has worked well for me, it keeps me strong and focused on what's going on and enables me to get through the hardest days.
At times I feel I must come across as hard to others and without feeling. This couldn't be further from the truth. Weekly counseling sessions keep me grounded but also allow me time to breakdown and face reality whilst giving me the strength to go care for Lisa the best way I can.
People often ask 'how much longer has Lisa got?', but the truth is we don't have that answer, the experts have got it wrong on a quite a few occasions, they didn't realise who they were dealing with. Lisa has more guts than I could ever have imagined, as a child she fell apart with a cold but as an adult she fights cancer like a Superhero. Her Dad and I are so so proud of her, there are days she's the patient from hell but then again, how would I feel if my Mum was sticking a needle in my leg? Injecting what she can only describe as hot molten glass shards into her already scarred, bruised and bumpy thigh or bottom, one of the drugs in particular crystallises under the skin and has left what seems to be permanent rock hard lumps all over her upper thighs, stomach and bottom.
I am so so thankful that our family has stuck together through this nightmare of a journey. Steven, Marianne, our gorgeous Ava, Peter and I are with Lisa every step of the way and count our blessings for every day we have with her.
Our friendships with some special people have grown so much, there's nothing they wouldn't do to help get us through this and for that we will be eternally grateful to them X
Radiate: (Of light or heat) emitted in the form of Ray's or waves, (person) clearly emanate a strong feeling or quality through their expression or bearing.
This week has been exactly that, it radiated life, laughter, love, fun, pain and more. I had a visit from a wonderful overseas friend who has beamed a ray of light into my life like no other, you may or may not recognise her from photos that we have uploaded to our social media and of course the collage above. I spent the day doing something with her, her best friend, my friend and mum that I have never done in my life before and will most likely never do again, that day was full on and at the end of it I was in a decent amount of pain, but you just keep injecting yourself with your pain meds and you soldier on.
So my pain unfortunately has been getting increasingly worse, I have used more pain medication in the last 2 months than I have in the last 4 years of having cancer, our fears were confirmed when I ended up in hospital and scanned and the results showed that all my tumours are growing and that the Immunotherapy that we were paying thousands of dollars every 3 weeks for did not work.
So what now? Do I lie down and let this bastard take me or do I look at other options, hell to the yes I look at other options, there is no way am I going to let this thing just take me down without a fight, I have to admit I did have a moment (it was fleeting) where I did have a cry and a whinge and thought how much more of this can one person take? We just keep throwing everything at this cancer and it laughs in our faces, it takes our money, our time, my health, need I go on?
I am hoping I will be afforded the opportunity to say, that's enough now, I've done all that I can possibly do and that's enough, but the reality of it is, I will most likely have a massive tumour bleed, bleed out and die within minutes, there will most likely not be the need for a stay at home nurse like you see in the movies (that does happen though) or a bedside vigil where I get to speak wonderful words of wisdom to each of my loved ones, that's why I tell them every day what I want them to know, both good and bad.
Radiotherapy! You firstly have a planning scan a few days prior to treatment, where the radiation therapists measure the precise spots that need to be radiated, this involves lying on a CT machine practically naked and a couple of women move you around to align your body with treatment areas and then tattoo small dots on your body as markers for when you have your radiation, it's all done using lines and angles and measurements, it's all very clinical and they use terms like centigray (the measurement of the amount of radiation absorbed by the patients body) fractionation (dividing total dose of radiation into smaller doses to try and save as much healthy tissue as possible) and dosimetrist (the person who plans the radiation dose), blah blah blah blah, is what I hear as I lie there, basically I hear the teacher from Charlie Brown peanuts comic, as they stand there and talk around me like a piece of meat ready to be diced and sliced into sections.
Radiotherapy uses radiation, such as x-rays, gamma rays, electron beams or protons, to kill or damage cancer cells and stop them from growing and multiplying. It is a localised treatment, which means it generally only affects the part of the body where the radiation is directed, but because my disease is so widespread and near so many vital organs, directing the Rays can be difficult, you do not want the Rays to hit your liver or your kidneys or other vital organs!
Basically you lie on a cold hard steel slab for 40 minutes (longer or shorter depending on your treatment) in a freezing treatment room and you have to lie perfectly still, while panels rotate around your body emitting a laser type treatment, no itchy nose scratching, no sneezing, no movement whatsoever with your hands raised above your head, try lying perfectly still over a 40 minute period and not to mention the fact that lying down in any normal circumstance is painful for me, because my tumours are suffocating my organs or pinching nerves and whilst they are basically invisibly burning away at your tumour tissue and hopefully not your healthy tissue, a stream of "soothing music" is being played over a sound system, one of the appropriately chosen songs last night was Toxic by Britney Spears. I mean seriously people, have we as cancer patients not had enough toxicity pumped through or veins already that you have to remind us that we're toxic whilst receiving treatment, I mean I love a good Britney beat, but a little bit of sensitivity wouldn't go astray, you may as well play bloody wind beneath my wings or tears in heaven!
I am having 4 sessions at this point and as I type in bed I have just hours ago completed my first of this round (I have had radiation before, not to be curative, to stop bleeds, but it actually worked and shrunk and even killed some of my tumours, one in particular was the size of a grapefruit and the radiation killed it) and I am already dealing with the lovely side effects, I had numerous spots radiated in my abdomen and I also had the 2 golf ball sized pelvic tumours targeted, now I feel nauseated, I've been up most of the night vomiting, my stomach is cramping, I've been hobbling (I'd like to say running, but that would be a wee bit of an exaggeration) to the toilet with the loose bowels the Nurses mentioned may happen, my bladder is sore, I've taken numerous hydromorphone injections to try and get on top of the pain and I'm sitting here typing a bloody blog, am I mad in the head or what?
One thing I don't know to laugh or cry about is the baby monitor currently sitting on my bedside table that monitored me last night in case pain got too much and I couldn't let my Mum and Dad know, I've gone from playboy babes to baby monitors all in the space of 24 hours, I swear someone up there is having a good old laugh right now.
I will keep you updated on the progress of my radiotherapy and let you know if anything interesting happens, now that I am back from my little mini break, I am hoping my radiotherapy side effects will not be too bad, so I can post more often and hopefully post something a little more insightful and uplifting, you never know stranger things have happened!
Have a lovely weekend people's x
Two words that hold so much strength, that they are truly the best medicine for a terminally ill person like myself, are hope and the second is Fuck, Fuck you and fuck your little crusade of tumours invading my personal space. Who do you think you are?
You're the elephant in every room I walk into and your the poisonous snake in my body and soul.
You have taken so much of me and my loved ones over the years that I'm surprised we're still standing (well I may be slightly more crouched these days and have a wheelchair, but you get my drift).
You have built us up so many times, only to pull us back down, time and time again. So many have given us hope, even you cancer, you've given us a few occasions there and we believed you, because that's what people in my position do, we look for hope in every little positive, it gives us the strength to continually front up to Iv's pumping toxic liquid into our veins, that literally poison our body to the point of non recognition , try new drugs, that the side effects are so bad they could potentially kill you or make your cancer worse (been there done that, thanks again Keytruda), go into numerous 10 hour life or death saving surgeries to be sliced open from ribs to pelvis and be gutted like a fish, whilst our loved ones pace cold hospital hallways praying, it gives us the strength to ignore oncologists who tell us on numerous occasions we won't make it through the night or to Christmas or the EOFY sales (I CANNOT miss out on those!, Hope, it helps me deal with the excruciating pain that is cancer on a daily basis, it keeps us going.
I am disgusted, saddened and angry, angry that you impact so many people's lives, every second, every minute of every day, you are being introduced to somebody new "Hi, my names cancer and I'm going to put your life on hold for an unspecified or unforeseen amount of time, so please mark you're diary as "stuffed for the unforeseeable future". Cancer does not discriminate, it does not care who you are? Where you're from? How much money you earn? What colour your skin is? What religion you are? Whether you watch antiques roadshow religiously? Whether you go to Mass? Whether you're gay, straight, Bi or transgender? Whether you're a good person or bad? What type of car you drive? All it wants is a warm bed in your body for a while (hopefully it's a short visit, if you ever have to go through it and it doesn't enjoy it's stay and leaves a really bad TripAdvisor review, so that no cancer ever wants to return to your body), in my case it's visiting for the rest of my life.
Cancer, I hope that you never have to go through what I and millions like me go through every day because of you. Going to bed at night not knowing if you are going to wake up in the morning, paying thousands of dollars a month for medications that make you so violently ill that your 4 bedroom walls or hospital wards are all you see for months on end, the pain of tumours strangling your organs, the pain of major surgeries and probably the worst thing of all is the pain you see in your loved ones eyes knowing they cannot take your pain away and through this harrowing ordeal at the end they are going to lose their 34 year old daughter, sister, Aunty, granddaughter, niece and friend and to this unrelenting disease, no matter what they do!
You are worse than Bill Clinton in a Cigar club, you make me sick to the stomach at the thought of you. I bet you're the type of person who doesn't take their rubbish to the bin in the food court or leaves a trolley right in the middle of a parking spot, plain old selfish.
You know what though Cancer? We've shown you, you thought you had a weak one when you came back to finish me off, but you weren't expecting me and my family to fight back, but we have and we still do, we will until my dying breath!
Those of you who have been reading my blog over the last few days, have probably noticed they've been a bit more angry of late and it was bound to happen at some point and although the drugs account for a large part of my mood swings, I also have to take ownership for my lack of patience and increased resentment over the past weeks, I mean I've been pretty good up until this point at controlling my emotions when it comes to you Cancer and you know what? I've woken up this morning with a renewed vigour, granted, it's probably the drugs and by 9am I'll probably resent and despise you again, but my plan today is to stick two fingers up at you and get dressed up in warm clothes, because it's actually raining here today and only going to reach 20 degrees Celsius and although my new size 10-12 maternity jeans (yes I've been a size 4 since they made a size 4, and now I'm wearing maternity jeans and I'm not even pregnant, just another adjustment in cancer life) won't close because of my drug and tumour fluid induced belly, I will find something to wear that is equally as stylish and I will rock it to lunch with my friend, where we will talk shit for hours and forget about cancer for a while, because although you have been taking over lately, I'm not going to let you today.
I am going to go out with my bloated face, body and confused and disorientated mind and I will rock that shit, chauffeured by my Father of course, as I cannot drive from my drugs and pain.
Cancer you're a fuckwit, but you're my fuckwit and I just have to accept that, so let's forget the fact today that I have tumours in the 20's in my abdomen and pelvis, let's forget the fact that I'm "dying", let's forget the fact that you exist and I'm going to have a wine, (at lunch I mean) cheers everybody and I hope your weekend is as memorable as I plan on mine being, totally fucking awesome!
Stay fabulous you Rockstars, today is my day and I will seize it, soaking wet in the rain, make it yours as well! ❤️🌟✨🚺♿️
Ps. My blog has become so much more to me than just an online diary, all thanks to you my fabulous Rockstars, it is cathartic and to know that sometimes it may bring comfort to those in their hour of need, makes me feel like we are achieving something greater than the cancer, so there's another two fingers up to you cancer, I'm writing about you and it's making me feel good, I bet that was never part of your plan either 🖕🏼🖕🏼
Who Cares What You Look Like? You're Alive
I am currently at war with my own body and I'm not just talking about the cancer, I'm talking about my appearance.
As mentioned in my previous blog, about my chipmunk, marshmallow cheeked Lara Flynn Boyle bloated hairy as wolverine looking face, my body has also decided to join the bloating party and it seems it was byoc as well, bring your own cellulite.
Since beginning the immunotherapy Keytruda (I had treatment via infusion through a port in my chest, once every 3 weeks) in November, I have gained about 8 kilograms (about 17.5 lbs or 1.25 st), 8 kilos you say, that's not much, well on a 4ft 11 inch framed woman, an 8 kilo weight gain is very noticeable, in fact 2 kilos is very noticeable. It's a combination of the drug dexamethasone I am on (a steroid) as well as other drugs I'm prescribed and well .......eating, my appetite is insatiable 24 hours a day (drug side effect).
Basically I'm retaining bucket loads of fluid (they call this disproportionate bloating, so it can make you look lop sided or fatter on one side of your face, stomach and limbs than the other, this has happened with my under the chin fat, yes I now have under chin fat, from here on in, under chin fat is a real word) but I am also frantically eating my parents out of house and home. I eat a loaf of bread (gluten free as I'm coeliac, we'll get to that in another blog) a day, pasta, drink Coke by the bucketloads (a year ago you could count on 2 hands the amount I would have drank Coke in a one year period), eat red cloud lollies, gluten free special K (YES!!!!!! Kellogg's has joined the gf revolution and made gf Corn Flakes and Special K and might I add they're delicious) ham, chicken, chips, cheese, you name it and if it's not healthy I am eating it.
My belly is bloated solid, to the point where my friends who are posting their 7 month pregnancy belly photos on fb are actually smaller than mine. It is rock hard, I also have hard lumps all over my stomach from injecting drugs, so they look very attractive, like ping pong balls under the skin, it basically looks like an exaggerated cartoon form of cellulite on my stomach. I can't wear form fitting clothes, due to the bloating, the obvious lumps and bumps and pain from clothing pushing on my tumours.
My legs are bruised, bloated and lumpy, also from the drugs I inject. As I've mentioned before people say "Who cares? You've got cancer and you're still here fighting it, who cares if you've gained weight or have a hairy face?". I'll tell you who cares about weight gain and appearance? Every single woman that's ever been born, that's who!
Just because a person gets cancer does not mean that they automatically become this self loving enlightened individual, why should cancer make me behave like any less of a woman, because I am sick am I meant to leave the "old" me behind and embrace the "new" me like some long lost relative? What makes people think that all we are is our cancer? We are not just our cancer, we are wives, girlfriends, mothers, entrepreneurs, best friends and most of all we are still WOMEN!!!!!
We are all our own worst enemies, we always have been and always will be, we can't help but critique ourselves relentlessly, it's part of our genetic makeup.
So do me a favour, if you have a friend that has cancer and they are going through treatment or may still be recovering from their treatment, they may be bald, have no eyelashes and eyebrows (yes this is the worst, no eyelashes and eyebrows make you look like an alien, Chemo makes you look more sick than the cancer itself in most cases), have bad acne, skin discolouration, cold sores, be bloated, fat and the list goes on, don't tell them they're lucky to be alive, who cares what you look like? Instead maybe empathise with them, obviously you're not going to say "Yeah, you do kinda look like a bloated hairy in all the wrong and not hairy in all the wrong places alien with bad skin, tally ho", perhaps tell them you could never begin to imagine how they feel, so you're not even going to try.
Your friend has just been through or is going through one of the most harrowing experiences any human being should ever have to endure, tell them you love them and you are there for them no matter what, so if they want to spend an hour bitching and moaning about how ugly they feel, just be there, just listen, don't judge and certainly don't rationalise, there is no rationale when it comes to cancer, just let us vent and hate the world and ourselves for a minute and then as any good friend would, go to the kitchen and get the tub of ice-cream out and 2 spoons, because the post cancer diet, like all diets can always start tomorrow.
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.