Chemo-Pro-Tips (your milage may vary)

i’ve now had seven cycles of the dreaded cytotoxins. 15 weeks or so. i’m likely to have 12 cycles – which is 24 weeks (plus the one where i was neutropenic and couldn’t have chemo). it’s become a standard normalised thing now for me – it’s not frightening, or even really something i think about. it’s what i do every second tuesday – thursday. i can wrangle the cords, and get used to the weird feelings, and manage the symptoms. i am used to it enough that i feel like i can give tips. as with all things like this, this is just my experience. other people who have gone through chemotherapy will likely have very different experiences, and have different advice.

1. the most important thing to remember – the key, vital thing that is the cornerstone of cancer: YOUR MILAGE MAY VARY.
so, essentially, no one had any idea how it’s going to effect you as an individual. it might work. with a lot of chemotherapies – they are very very likely to work. they might not. you may get every single side effect. you might get none. you may feel so sick that you want to die. you may actually feel better than you did prior to diagnosis. it is completely unpredictable. these drugs are complicated weird amazing things that do complicated amazing weird things to your body.

2. there is no ‘one’ chemotherapy.
each person has drugs which cater for you, as an individual, as worked out by your oncologist. there are often protocols for the most used drugs for your type of cancer, and chemo will vary massively between cancer types, but you may be in the day ward next to someone with the exact same cancer, who is on totally different drugs. accordingly, your drugs have very different side effects. so, someone who is having treatment for colorectal cancer is going to likely have a totally different experience to someone on breast cancer treatment. then again, someone on colorectal chemo may have completely different experiences to someone else on the identical drugs.

3. it may not be as bad as you think.
i went into chemo terrified it would be the hardest, most difficult medical experience i’ve ever had. i had several doctors tell me outright that it would probably not be as bad as i was expecting due to my age, my health, my fitness, and my risk factors (non smoker, v. light drinker for the last few years). i didn’t believe them. they were right. in fact, as i’ve said before, due to how the cancer was effecting my body – in a subtle way that i didn’t even notice – at about my 5th treatment, i started to feel dramatically better. more energy. less nausea than i had before i started (though the nausea i had before i started was crippling – i was vomiting almost once a day, and constantly felt like i was going to throw up, and i lost 10kg in a short period of time). i am still exhausted, and each treatment is a bit more tiring – i feel a bit more nausea – and i get just that little bit more sick of having a trail of cords coming out of my right breast for a few days – but it is not that bad. however, see 1 & 2. it might be horrible.

4. no matter how bad it is, the doctors and nurses will do everything – and i mean EVERYTHING – to try and make it better.
there are signs in the ward, listing the stuff to report, at my day therapy ward. if you feel sick, or are in pain, or in any discomfort, there are things that the nurses can do to help you, and they will do everything they can to make the experience less horrible for you. your nurses are your greatest allies. be open with them. before you know it, you’ll be happily talking about your poo, wee, nausea, and liver enzymes like there’s no tomorrow! there are a lot of anti-nausea drugs. ginger & peppermint are amazing.

5. getting sick on chemo is bad. but it’s also not the end of the world.
for the first chunk of chemo (5 cycles) i had this horrible, barking cough. i put it down to a side effect of the treatment – one of the side effects i have gotten is excess mucous production, so i have a perpetually running nose. i was tired, and dizzy, and have fevers, and a really sore throat, and felt pretty goddamn rotten. it was also freezing because it was the middle of winter. a few weeks into this ‘chemo cough’, my partner developed an identical one. it wasn’t chemo side effects: it was a cold. i had the cold for about 10 weeks – it was goddamn annoying, but viral, so not a huge deal. however, i got severe fevers, and had low white blood cells. this is one of the massive chemo ‘danger zones’ – febrile neutropenia, it’s called – and it may mean you have a bacterial infections. if you are immunocompromised, and get a bacterial infection, you can die, and die very quickly. due to my symptoms, i was pre-emptively treated for febrile neutropenia twice, because protocol at my hospital is that if you prevent with a fever over 38c on chemo, you automatically get IV antibiotics within 30 minutes. i was terrified – convinced that, because i got sick when on chemotherapy, i was going to die. the nurses kindly explained that, as long as you stay alert and get treated in time, it’s actually ok, and treatable. (nb. i was lucky that i tested negative for infection all three times i presented with fever). obviously, do all the stuff you’re supposed to do – wash your hands a lot, be careful of foods that are high risk, take care in crowded areas, stay away from people you know are sick and make sure your friends know to stay the hell away if there is any risk of infecting you, but if you do get sick, it’s shitty, but also doesn’t mean your life is over.

6. blood clots are a serious problem. stay alert but not alarmed.
try not to read too much about them, because it’ll scare the shit out of you, but they are a problem, and cancer + chemo makes you high risk. i’ve repeatedly asked doctors for medication or something to reduce my risk, and they all say the same thing – don’t sit down for hours at a time, and drink a lot of water. so, do that. exercise also will likely make you feel slightly better, as unlikely as that sounds when you are bloody tired and sore and irritated. even if it’s lame, ‘walking to the shops’ exercise.

7. drink a lot.
though, as my oncologist so excellently clarified, ‘not bacardi breezers’ (i have no idea why he thought i would drink them). water, cordial, soft drink, juice, milk, whatever it is – just stay hydrated. i hate, and i mean HATE drinking water. it’s really hard for me to get in the required amount because tap water makes me feel sort of sick. but i’m getting better at it – small glasses that i try and drink one of per hour, nice tasting cordials that i dilute, etc. some people may say not to have sugar. my feelings on woo-woo are clear: sugar does feed cancer cells, because sugar feeds ALL your cells. that’s how it works. however, if you want to avoid sugar for whatever reason, that’s obviously totally cool and your choice, etc. i’m pro-sugar however, and it’s been a massive help for me on gaining the weight i lost, and keeping my energy levels up.

8. you will need sunscreen and lipgloss and moisturiser.
your skin will almost definitely dry out. i am a freak here – my cancer treatment coincided with my decision to stop taking the pill (blood clots), and the reason i took the pill was to control my acne. so, my skin is oily and acne covered, rather than dry and crackling like it is supposed to be. however, while my body was adjusting, my lips cracked and dried out, and my hands did too. your milage, again, will vary – but i would advise keeping something nice smelling on hand. Moo Goo is my product of choice.

9. BICARB mouthwash!! it will change your life.
when i was an inpatient for my first chemo, they gave me a special present of a bottle of bicarb mouth wash with a delicious mint hint. it’s amazing, and way less gross than just rinsing your mouth out with the bicarb. it is likely that when you get diagnosed they give you a kit of stuff to help you out, kindly sponsored by the people who make up your chemo drugs, and included in said kit is bicarb to help with the potential/likely mouth ulcers and bleeding. if you can get your hands on the bottle of bicarb premix stuff from your chemist, do it! 15 weeks, not one mouth ulcer. i’ve felt two forming, and both have been headed off by the mouth wash. the recommendation in chemo-training was to rinse your mouth out four times a day…. because i’m useless, i usually only do it once. that’s been enough for me.

10. get used to bleeding.
this also will depend on your sort of cancer. but, a lot of treatments include things that break down tiny blood vessels. which make your nose bleed. you can’t blow it, it constantly drips, and is generally gross. your mouth will probably bleed often when you brush your teeth. your bowel lining will be angry, and possibly also bleed, leading to additional fun poos.

11. UTI threat! alert but not alarmed.
another thing i’ve escaped, i think… though every second damn urine test shows positive for raised white blood cells. UTI’s are really common while on chemo. if you aren’t blessed with getting them before, watch out for the symptoms (stingy wee, needing to wee every five minutes, blood in wee), and get treatment as soon as you can – or talk to one of your medical team about stuff you can take/do to prevent or minimise them (cranberry tablets, ural, hiprex). your kidneys are your friend! so is your bladder! try and keep them happy. drinking a lot again, is helpful.

12. fevers. get used to them.
as mentioned above, fevers are a really massive thing you need to look out for, because they can mean really serious, dangerous, life threatening things. or, you might just get them all the goddamn time. i was at a point where i would be feeling completely normal with a temperature of 39c at the worst of the fever-times. it was actually something that i wasn’t told could be ‘normal’ during chemo-training — because it’s so serious if it’s an infection, i’m guessing doctors would rather you show up to the ER with nothing wrong, then ignore the fever. from speaking to other people who have/had cancer, fevers happen. a LOT. panadol becomes your best friend, along with trying to moderate your body temperature via heated blankets, or less blankets. or, whatever it is you need to do. be alert but not alarmed with panadol if your liver is unhappy, and unless you are certain that it’s not an infection, go to the hospital. you will get to know what your body is doing, and learn what signs to look out for. but don’t take risks with it.

13. it is better to show up to the hospital and have nothing wrong than die.
i felt really bad about having to return to the ward when i had fevers, and even worse the time i fronted up to the ER, and spent a few hours in emergency being pumped with antibiotics and saline, while reading a terrible fantasy novel (Dragons of Autumn Twilight). i ended up repeatedly back at the day ward due to fevers, and constantly wanted to apologise to the nurses for wasting their time. you are not. as much as i do state here that it’s more likely than not to be ok, it might not be, and you can’t take that risk, and have no need at all to. call your clinical nurse when you have questions – even dumb ones. if you have a community nursing service, call them too. call the cancer council nurses. these people are here to help you and answer your dumb blood clot/is my port-a-cath infected/am i dying because i have a cough questions. and if they tell you to go to the hospital, do it, or they get mad at you, and you’re an idiot, because this stuff is serious.

14. chemo is kinda exciting.
that sounds really screwed up, i know. but when you find out you have cancer, you are so incredibly disempowered. your body has been taken over by this horrible condition, this terrifying state of being where your own cells are betraying you as a whole. the chemotherapy drugs, and adjunct drugs, are being put into your body to treat your illness. it’s not a fun, gentle treatment. it’s intense, dangerous, and invasive. but it’s very very likely to help prolong your life. (i’m not comfortable about saying ‘save’ because chemo isn’t always used to save lives – and saving a life in terms of cancer treatment is a complicated statement for people on long term palliative care like myself, when your treatment isn’t viewed as curative/likely to cure your cancer. no one is telling me that the chemo is going to kill all the cancer. it won’t. but it will give me more time, and better, healthier time). when you get chemo, those drips feeding into you are doing something to treat your illness. and that’s awesome.

15. ask about a port-a-cath.
i’ve watched people without them be cannulated, seen them wince and seen the tears in their eyes after their arms have been bandaged in a warm towel to try and make their veins injectable. i’ve seen people with PICC lines having to pretty much stay frozen in place while sitting in the chair in order to get it to stay working, after it’s been in for 4 months or so. and everyone i’ve spoken to who’s had a port-a-cath has been full of praise for the advantages over fortnightly cannulation. it might not be suitable for you, but check with your oncologist before you start. it’s also painless (once you’ve recovered from the surgery). for those unfamiliar with port-a-cath’s, do a wee google. they are amazing. i love my port-a-cath, and my whopping big boob-scar for it. it looks like a pirate scar!

16. sleep.
get sleep. seriously. make sure you get enough sleep. it’s cancer, and these drugs are doing insane things in your body. if there’s any time in your life where you have an excuse to do whatever the hell you want, it’s now. as i read somewhere once, people think you are a hero if you manage to get a pair of pants on. sleep in late. go to bed early. if your body is tired, you need to be in bed to let the drugs do what they need to do. if you are anxious because, well, cancer, get sleeping pills/sleep aids/drink warm milk.

16. get psychological/psychiatric assistance.
i cannot emphasise this enough. cancer treatment is rotten. having cancer is rotten. it’s all miserable business, and chemo is going to make it worse, and harder, because you feel tired, gross, and pretty broken a lot of the time. i’m in the special situation of needing a psychiatrist due to my bipolar but it’s possible your treatment hospital might have an oncology psychiatrist to see. if you do have any pre-existing psychiatric/psychological issues, make sure you try and get in with an oncology psychiatrist. psychiatric medication can sometimes not play nice with your chemo drugs – you’ll need the team on board to help you through it if everything goes pear shaped and you end up having mental health issues as well. this is likely something that your oncologist will step you through – make sure you fully disclose all your mental health issues, because it’s important. more of my first oncology consult was spent discussing my bipolar than it was my cancer. depression is very, very common in people with cancer – take it seriously, get it treated, and find someone to talk to to help you through it.

17. you can do this.
you may feel like you can’t do it anymore. i think that’s pretty normal. i usually have a few days a month where i just feel like i can’t keep doing this – the surgery and radiation and the chemo and the pain and discomfort and the general brokenness of all my plans – an overwhelming feeling that i just cannot. do. it. i fail at cancer. i fail at life. etc. and then it doesn’t feel so bad, and you keep going. you get used to it. you just do it. it’s not about being strong, brave, courageous, inspiration. it’s about just doing what you are told, when you are told, and sucking up how shit it is some of the time, and bawling about how shit it is some of the time, and feeling terrified some of the time, and feeling completely normal, somehow, despite having cancer, some of the time.

if there’s one thing i can say about cancer, that’s trite and simple, it’s: you get used to it. it stops being shocking, and alarming, and terrifying – though it sometimes doesn’t feel real, and you forget about it, or you remember, shocked, that yes, you have cancer- this is what it is to have cancer – but you get used to it.

this song sums it up. NB. this is not a cheery song.


About elizabeth

various things.
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5 Responses to Chemo-Pro-Tips (your milage may vary)

  1. marymac says:

    Sometimes I see people noticing the scar from my port and being afraid to ask. I’m going to start volunteering that it’s from my days on the high seas. 🙂

  2. Jenniferlloyd says:

    I remember one of my biggest things was the stomach pain I had, and not understanding that it was actually nausea but being presented in a different way to feeling ill. I went into hospital overnight numerous times with stomach pain and was always very pleased to be given strong pain killers. i was also very appreciative of my partner, Glenda, taking me to hospital in the middle of the night all the time. The doctors and nurses were always very helpful. I did find though that I would put on a bright and cheery face for the nursing staff and Glenda had to say “she’s really in a lot of pain even though she looks cheerful” quite a few times.

    One other thing I remember was taking a non-chilled can of Pepsie with me wherever I went. The chemo drugs are busy killing off your nerve endings, so you can’t have cold things. This becomes very difficult in restaurants when everything is refrigerated. i just took out my warm Pepsie and said I couldn’t have cold drinks and was it OK for me to have my own. It was always OK.

    • veritas says:

      i’m guessing you were on oxy during the no-cold-things time? i’m on the one that gives you the trots, and i get the oxy that makes cold things really painful at the end of all the surgery – BYO soft drink is an excellent idea.

      (i voted to go with the irinatecan first because of winter, and i was scared of the freezing fingers symptom and for some funny reason thought all my treatment would be over by december. haha. no. was totally off on that cancer timeline!)

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