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!
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.