It took 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.
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, and whilst I will cover this in a separate post, in actual fact, the first thing you need to focus on is preparing yourself mentally for what you are about to experience. For anyone else finding themselves in this situation, here are my thoughts and top tips:
- Expect it to be terrible, then when it’s not, you’ll feel happy you beat it!
- Learn to let others help
- Spend time putting together a bag for the hospital
- Read the literature about your treatment plan
- Prepare for hair loss in advance
- Beware of misinformation on the internet
- Research supplements
- Keep a note of all of your questions for your doctor
- Keep track of your symptoms
- Allow plenty of extra time for your treatment so you’re relaxed as possible if delayed
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. On reflection and now I am through it all, I realise that my friend was right and the whole thing is pretty horrific, but expecting it to be the worst thing ever meant that on days when I felt good, I felt really good! #winning
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 chemotherapy drugs whilst 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
- you feel like you have lost all dignity
- it seems that the treatment is worse than cancer itself
- you need to stay home with a warm blanket and be looked after
- 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 – all of these things are completely normal, and despite much of social media depicting real-life human super-heroes, I guarantee that they will have had these rubbish days too, so embrace the days when you want the whole world to sod off and leave you to fester in a ball of negativity and self-sorrow. You can be wonder-woman/superman tomorrow!
This will absolutely NOT mean that your attitude is not positive enough and are therefore failing at the cancer thing – seriously this thought went through my head a LOT on my bad days which looking back is completely ridiculous! Give yourself a break – you are fighting a serious disease and it is OK to have bad days.
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 your confidence to your core and how you view your entire sense of self and others which are just outright hilarious in their ridiculousness!
You will give up a lot of control over your life, handing it over instead to your medical team. If you are a control freak like me, this can be tough, but honestly, just go with it and relish the freedom of having someone else tell you what to do/where to be.
In case this all sounds super-negative, I will balance this with the fact that there will be days when you:
- feel surprisingly OK
- actually feel like you could take over the world and are like a whirling dervish of efficiency and energy (this may be the steroids!)
- 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
- will be bowled over by simple acts of kindness and compassion by strangers for your current situation
- will prove to yourself and everyone around you that you are stronger than you ever thought
- show everyone that you a full blown cancer-kicking chemo ninja warrior!
I strongly recommend taking 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.
Research & Preparation
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 chemotherapy 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.
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.
Be prepared that people react very differently to cancer – some of my close friends found it hard to know what to say or be around me when I was very poorly, other people that I barely knew were absolutely amazing with help and offers of support, other people suffocated me with too much concern and care. Although this came from a place of love, it was tough not to offend when people just wanted to help and I just wanted to hibernate.
Try to use your words, and explain how you feel. It is entirely possible that this may offend, it is entirely possible that relationships will change (some for the better, some for the worse) as a result of this experience, but trust me, your number one priority and really the only (or at least the main) thing you should be worrying about at this time is YOU.
You have a journey ahead of you, and if there is a single time when you can and should be selfish, it is right now. You can’t pour from an empty cup, so whatever you can do on the self-care front will help as you go through the next few months.
For me, this was about keeping up with my exercise and kickboxing, still going to concerts/days out/holidays, still being myself as much as possible. For you, it may be something completely different. Find your joy, and wherever possible, hold on to it – hard!
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…
Take a deep breath, dig deep, be brave and find your roar!