It’s taken me quite a while to get this blog post together, taken time to be able to put my thoughts about chemo into a coherent stream of consciousness and something that makes sense, and hopefully offers a bit of insight into what chemotherapy is like and some tips on getting through it. This will be a series of posts because there is just too much to put into one post, especially as I have always been a talker!
So, one of the first questions that I asked myself when I was preparing myself for chemotherapy, was “what should I take with me to a chemo session?” What do you pack in a hospital bag when you are going for chemotherapy? It is difficult when you don’t know what to expect. Mentally, I wanted to prepare myself as much as possibly for what to expect from my chemotherapy session too and what I was about to experience too. For anyone else finding themselves in this situation, here are my thoughts and top tips:
A friend who had also gone through chemotherapy told me before I started treatment to “just prepare yourself for this to be the worst experience of your life” and funnily enough this helped me enormously as having set that expectation in my mind, it was not as bad as I expected, even though on reflection I realise that my friend was right and the whole thing is pretty horrific… I mean, you are literally choosing to poison yourself with some really very nasty chemicals, which feels like a very unnatural state of affairs. When you are about to undertake any part of your treatment plan, you are sat down and asked to sign a piece of paper that has a ridiculous number of side effects listed, including, ironically the fact that some drugs in curing the current cancer you have, can actually cause different cancers down the line. I kid you not!
It is overwhelming, scary… and yet at the same time, weirdly manageable and you do it, you go ahead with it because the alternative, not fighting, is incomprehensible!
If you are reading this, and are about to undertake chemotherapy the first thing to remember is – you can do this!
Get prepared that this will take over your life for the next few months; that ahead of you there will be days where you don’t recognise yourself, days when you feel like you have lost all dignity, days when it seems that the treatment is worse than cancer itself, days where you need to stay home with a warm blanket and be looked after, days when you feel like rubbish and like giving up and then you feel guilty because you are not being “positive” enough and that maybe this will ruin your chances of getting better (NB – it won’t, it’s normal and you are allowed to grieve for yourself and the situation you find yourself in).
Your life will revolve around hospital appointments and taking handfuls of pills/injections and checking your temperature, keeping away from lurgies and dealing with a whole manner of different side effects – some which are annoying, some which will floor you physically, some which will shake you to your core on how you view yourself as a person and your whole confidence relating to your entire sense of self and others which are just outright hilarious in their ridiculousness!
Then there will be days when you feel OK, days when (normally steroid based) you actually feel like you could take over the world and are like a whirling dervish of efficiency and energy, great days when you spend time/do something you enjoy with friends and family and it all tastes that little bit sweeter because you are overwhelmed with the fact that life is short and is for living, days when you will be bowled over by simple acts of kindness and compassion by strangers for your current situation, days when you will prove to yourself and everyone around you that you are stronger than you ever thought, days when you will be a full blown cancer-kicking chemo ninja warrior!
The first recommendation I would make is to take advantage of these good days and plan for/be kind to yourself on the bad days. Make plans to go out but don’t feel bad about breaking them, work if you want to/are able (or don’t – this is totally a personal choice), keep active (it helps), eat well when you are able to but allow yourself junk at other times if that is all you can stomach, rest when you need to, be selfish sometimes and don’t feel bad about it, get your support system in place, and importantly, get prepared.
Read the literature about your treatment plan that your medical team give you – there will be the long list of side effects, but they will also be able to tell you the shortlist – the ones which are the most likely and this will help you prepare.
Are the drugs that you will be given likely to cause hair loss? If so, it is important that you think about what your approach to this will be in advance so that you can prepare. Are you going to cold cap? If not, chemotherapy induced hair loss can generally begin within a week of you your first session, so you will want to have prepared by getting at least one wig/hat in place beforehand. The last thing you want to be doing is running around trying to find the ideal wig when you are feeling rubbish post-chemo!
If possible, it is worth taking a friend/family member with you to your initial medical appointments as your brain will be spinning and it is hard to take everything in. Get informed and take control of your treatment plan – so much of this situation is outside of your control that personally) I found it really helpful to do my own research – just be aware that the internet holds a whole variety of information of varying reliability, and everyone’s experience is different. Just because a random person in Oklahoma “cured their cancer” by dancing round a sacrifical lamb at midnight on the spring equinox, it doesn’t mean this will be the right thing for you. Dr Google is both a wonderful and terrible thing – your best source of information is your medical team, as they will know your cancer, your treatment plan and your body.
Ask about relevant clinical trials, ask (if relevant) about any supplementary remedies that you are planning to take/use (particularly supplements as they have potential to interact with your chemo regime) write all of your questions down in advance as there is a strong chance you will forget a key one otherwise. In fact, keeping a notepad and pen with you at all times is a good idea whether this is to keep track of your questions and subsequent answers, to take notes, keep track of symptoms, temperature readings, thoughts and feelings or simply to keep a reminder of things you need to remember when chemo brain kicks in!
I presumed before starting all of this that chemo was chemo and that was that, I didn’t know that there are all different types and ways of administering. For myself, I had four rounds of “EC” followed by four rounds of Paclitaxol, and had this on a “dose dense” schedule i.e fortnightly. The EC was administered by direct injection and took about an hour, the Paclitaxol was a drip infusion and took about five hours. Different people (even with the same type of cancer) often have a different regime. Ask and be prepared for how long it is likely to take, and always double the time in case your drugs aren’t ready etc – particularly if you have other commitments such as childcare.
Things to take with you on the day:
- Reusable water bottle – both during and after chemo it is vital to hydrate, I drank so much water it is a wonder I didn’t float around the hospital! The hospital only has tiny plastic cups which are not only very bad for the environment, but also are too little and therefore annoying
- Reusable coffee cup – again because of the environment and tiny cups thing again. If you are cold capping you are going to want a hot drink with you! In fact you are going to want a vat of your hot, steaming drink of choice, not a teeny, tiny plastic cup of it.
- Snacks in a small cooler bag – you will be juiced up with steroids, and this will make you ravenous, plus… hospital food! Bleurgh! Depending on how long you are going to be there, you may want to consider taking your own lunch, particularly if you taste buds are going haywire. Again, because of the steroids, I recommend food that is on the stodgier side. Plus (if relevant) the cooler bag is useful for taking home any medication such as the immune system-boosting injections that need to be kept cold.
- Boiled sweets – chemo can give you some really weird tastes in your mouth, sucking on a boiled sweet can help counteract that.
- Layers – you may be sitting around for a long time, and this can make you cold. Conversely (for women) if a hot flush kicks in, you are going to want to be stripping off quickly and easily
- Heat Pad – if you are cold capping, they will literally be freezing your head. A microwavable heat pad will help you from getting too cold. This is also useful if you do not have a Port or Picc (which if you are in a dilemma about whether to do this I would strongly recommend!) and wrapping a heat pad around your arm can help your veins “pop” making it easier to get the cannula in.
- Things to do – this is an obvious one, as you are likely to be sat around a lot. I would also recommend things that do not require too much concentration, as you may drift off/find it hard to concentrate. Whether it is books, magazines, games on your phone, downloaded films on an ipad, a good friend/family member to talk to – whatever works for you to keep your mind occupied.
- Headphones – the incessant beeping of the drips can drive you mad, take headphones and save your sanity!
- Notepad and pen – you will be given medications on the day to take home with you. They may well be numerous! It is worth writing down what is to be taken when and in what order to keep track. It’s worth keeping with you at all times, not just on chemo days
- Lipbalm, Hand Sanitiser & Hand cream – some more essentials that are worth keeping with you at all times. Lip balm because your lips get extremely dry and chapped when having chemo, hand sanitiser because you will have a depressed immune system and should be slapping this on with abandon at all times to help keep germs at bay and hand cream because between liberal dousings with hand santiser and the effects of chemo, your hands are likely to dry out like old bits of leather!
- Whatever else you need to help you feel like the cancer-kicking warrior that you are – for me this was my high heels and red lippy (at least for the first and last session!) for you it might be something completely different. Go with whatever works for you!
- A big bag to put it all in!
- Someone to drive you home – I would come out of my chemo sessions feeling like I had spent the afternoon drinking on a hot afternoon. There is no way I would have been safe to drive myself home, and there would probably have been a case for reckless driving if I had. Be safe, get a lift.
- For cold cappers – you will need some extra stuff… Painkillers (take about 30 mins before putting the cap on), water spray, a mild hair conditioner – preferably chemical-free as your scalp will be sensitive, a wide tooth comb, a towelling fabric hairband, and a towel
So there you go, my first post about surviving chemo. I hope you find it useful and wish you all the best of luck and positive vibes. This is where sh*t gets real – you are likely to be sharing a chemo room with some very poorly people. At some point in your journey, this may well be you. Either of those scenarios is distressing and scary. So my final tips of the day are:
Take a deep breath, dig deep, be brave and find your roar!
You’ve got this!