I haven’t written many posts about my breast cancer diagnosis, but I felt that it was important to dispel any misconceptions about chemotherapy – and what having chemo really feels like.
Back in March – just before I started my chemo and when I was recovering from my lumpectomy – I met up with a friend. She also had breast cancer and was a few months ahead of me in terms of her chemo.
When I asked her to describe how it felt having chemo, she told me that it was like having flu but only ten times worse.
Now we all know what having flu feels like – it’s bloody awful; you’re sweating one minute, shivering the next, then there’s the hallucinations, the zero energy and the feeling of wanting to sleep until it was all over. But was chemo ten times worse than this – or even on a par? Well that was certainly questionable.
My planned chemotherapy
Just to put things into context and give you some background to my treatment so far. After my lumpectomy, I was told that I would need 24 weeks (around six months) of chemotherapy – 12 weeks on a drug called EC, which is a cocktail of the drugs Epirubicin and Cyclophosphamide. And then a further 12 weeks on a drug called Paclitaxel (or Taxol).
This would be followed by radiotherapy and then the next course of adjuvant treatment (treatment to keep cancer from returning), which as I write this, I’m still waiting to find out what that will be.
Both courses of my chemotherapy would be via an infusion – and before I started, I envisaged a whole day of me sitting in the chemo suite feeling rough to the core. In reality, each infusion from start to finish – including administering all of the drugs – took around three hours. The only thing that would add to my time in hospital would be the waiting around to be called in.
My very first chemo session
For my first dose of EC chemo, I remember it not being a very pleasant experience, but that was mostly to do with the nurse trying to find my veins to put the jab in.
I’ve always had veins that hide – whenever I’ve given blood doctors and nurses have struggled to find them and I’ve always felt like a bit of a pin cushion.
The same thing happened on my first visit to the chemo suite. The nurse couldn’t find my veins in my hand, but boy did she try! It was worrying as I didn’t know what to expect and given the bad start – with three failed attempts at trying to locate the vein in the back of my hand, I was losing all will…. Then came the magic words – or rather word – “Grant”.
Grant was the head nurse in the chemo suite and, as I was soon to learn, this guy knew his stuff. Everyone referred to him and he didn’t need a computer or a clipboard to give anyone an answer – he was like a walking encyclopaedia.
Grant also knew how to find a vein straight away without any prodding or poking. He went straight into the vein in my forearm – it was pain free and seamless. If only they had called Grant over the first time I thought. I had worked myself up a bit by this stage and was feeling anxious.
But the chemo suite nurses quickly put my mind at rest. They told me that I would need a picc line for my subsequent chemo sessions (Peripherally inserted central catheter), which is basically a thin tube that is inserted into a vein in your upper arm. The chemotherapy drugs are then fed straight into the tube. This is great because it avoids any damage to veins via the chemotherapy being given by needle – and the chemotherapy can also be administered much more quickly via the line.
Before any chemotherapy treatment (usually the day before) you’ll need to give blood to make sure that your blood counts are at a good level and your body can cope with receiving chemo. The picc line also makes it really easy for the nurses to take blood.
While I’m on the subject of what they do before you have chemo – your height and weight are taken every time because the dose of chemo is based on your body mass index.
The EC chemo drugs
Back to my first treatment – and after getting over being prodded and poked, I was to have four EC treatments over 12 weeks – basically every 21 days.
The first two EC treatments were really straightforward. You arrive at the chemo suite, they tell you to take a seat outside until a chair (and a nurse) are available, then when they call you, you go and sit in the chair.
They ask (every single time) if you are allergic to anything and then they run through all sorts of questions – side effects from the last treatment, any coughs, tingling in fingers, sore eyes, nausea, how you're feeling in gnereal….you name it, they will ask you.
About an hour before the EC chemo is given, you’ll need to take a tablet (I believe this was to prevent nausea), but I remember on my first visit, they had to give me the tablet in the chemo suite and then rather than just sit there, I decided to go and look around Sainsbury’s for an hour until it was time to go back for the chemo. For future visits, they prescribe the tablets so that you can take them at home an hour before treatment to avoid delays.
After pre-checks and administering steroids and anti-sickness medicine – typically via an infusion – the real chemo treatment begins.
The nurse will check your name, date of birth and hospital number with another member of staff. These double checks are important of course (and reassuring) and mean you’re getting the right treatment designed for you.
The chemo nurse will also flush the picc line to make sure it’s clear and working (you might feel the cool liquid go into your arm) and then you’ll be hooked up to the chemo drugs.
What happens next is up to you – you can then just sit there and do whatever you feel like doing. If you’ve got someone with you, you can chat, do a puzzle, read, relax, meditate – or do what I did and take the opportunity to work and catch up with emails!
Go to the toilet just before the chemo begins. You wouldn’t believe how all these fluids going into your body can play havoc with your bladder!
I’ve got a really weak bladder so I usually go to the loo at least twice while undergoing chemo (in case you were wondering, you have to wheel the drip in with you to the loo!)
The one side effect of the EC drugs that I distinctively remember is my nose, eyes and head suddenly becoming very sensitive while having chemo.
Have you ever jumped into a swimming pool and the water has gone straight up your nose? It affects your eyes and your head…? It feels like exactly the same sensation, but if this happens to you, just tell the chemo nurses and they will reduce the flow of the chemo, meaning the symptoms disappear. It’s very odd when it first happens though.
So there I was, breezing through my first two rounds of chemo thinking “This isn’t so bad at all”. And then came Round 3. Round 3 was (and still has been) the worst round of chemo I’ve received to date.
I remember being in bed for about three days straight, unable to drag myself up. I would lie there all day, waiting for VIP and the kids to come home from school. The days went quickly – probably because I slept most of them – but I was also aware of being awake for hours and not knowing if I was hallucinating or not. A bit like having the flu I guess – and the hot flushes only added to this.
After three days of not being able to do much, I started to come round to my normal self and then I’d enjoy two weeks of “being normal” until the fourth and final EC chemo cycle arrived.
If truth be told, I was dreading it given my experience of cycle 3, but undeterred, I decided to treat it like a whole new chemo session and waited to see what the outcome was.
The issue was (as if I didn’t need another reason to be better quickly) was that it was my daughter’s last day at Junior School two days after my final EC chemo treatment (the day that I was bedridden from my third chemo cycle), and I had put myself forward to make a speech at a Leavers Assembly.
I had written the speech and got everything ready – and in case I couldn’t make it (but in my mind nothing was going to stop me) VIP would read out my speech instead. That was the last thing I wanted to happen. I wanted to surprise my daughter and prove to myself that I could do this – no matter how crap I felt.
And I did it – apparently moving a few parents to tears because of it (not my intention). But I overcame a challenge – a physical and mental one – to deliver when I needed to.
As it turns out, Cycle 4 of the EC chemo wasn’t nearly as bad as Cycle 3 – and although they say that the effects of having chemo are cumulative (in that they get worse over time), in this instance it wasn’t the case.
The side effects of EC chemo
If you Google the side effects of EC chemo you’ll find a whole list of possible effects, so my advice would be Don’t Google It!
Be aware that if you feel unwell, you’ll need to take your temperature and that if you get an infection (of any kind) you’ll need to get yourself to the hospital asap, but the best sources of information come from your chemo care team.
The main side effects of my EC chemo treatment were feeling sick, lethargy at certain times – usually 2-3 days following chemo, loose bowels and a sore mouth.
I did get a few ulcers in my mouth – mostly on my tongue – but these disappeared after a couple of days. I also remember going for a wee straight after my first chemo and thinking that I had started my period. In fact, because the Epirubicin is bright pink, it gets inside your bladder and makes your wee pink! This only lasts a day usually though. What a shock that was at first though!
TOP TIP Buy a soft toothbrush to clean your teeth and brush them regularly. Before you start chemo, book a dentist appointment as you can’t have treatment while undergoing treatment.
The hair loss
I started to lose my hair about three weeks after chemotherapy started – and this is about the norm I discovered after speaking with others.
I decided that I wouldn’t have a cold cap for my chemo (scalp cooling to prevent hair loss) – mostly because the chemo treatment ended up being longer AND it was associated with headaches – something I could do without having endured years of having migraines.
I had really long hair so I prepared for chemo by getting my hair cut really short and donating it to The Little Princesses Trust. In doing so I also managed to raise over £600 for the charity by sharing what I’d done on Facebook.
When my hair started to really fall out (I only had to look at my pillow in the morning to know), then I asked my daughter, who was 11 at the time to shave my hair off. I didn’t want her to become worried about my changing appearance, but to embrace it and feel like she was controlling it, which helped immensely.
It took me a good few weeks to showcase my bald head with pride. I would hide under hats most of the time, but as it was the middle of summer there came a time when I just felt the need to feel liberated and free – so off the hats came. Even at networking events and business meetings – this was me – cancer didn’t define me and I certainly didn’t want to be felt sorry for or judged because of my hair loss, so I just went about my daily business as usual.
The side effects of Paclitaxel
After finishing my treatment for EC, I moved straight onto a drug called Paclitaxel (or Taxol for short). About halfway through my chemo treatment I had a minor setback in which I got an infection (in my breast) and was admitted to hospital. They kept me in for two days and chemo was postponed by a week while I underwent daily antibiotics as an outpatient in the Ambulatory Unit for a few days.
The infection cleared up and I was ready to restart the chemo, but it was then postponed by an extra week when they were short staffed in the chemo suite and couldn’t treat me. Following that, and it has been plain sailing ever since.
So what happens at the moment is that I go into hospital every Wednesday to have my picc line cleaned, the picc dressings changed and my blood taken.
It’s a ten-minute appointment at most, but I have been known to be at the hospital for over an hour (again, waiting times vary depending on how busy the chemo suite is).
The following day (every Thursday) is chemo time and I’ve managed to get an early morning slot – 9.30am – so that I’m usually out of there by 1pm and recovering at home waiting for the kids to get back from school.
Even though Paclitaxel isn’t so brutal on your body as a chemo treatment (and that’s why the body can cope with having it every week as opposed to every 21 days for the EC drugs), I’ve found the side effects to be worse.
The annoying thing about Paclitaxel and the weekly cycles are that as soon as you start feeling normal, it’s time time to have the chemo again. So in reality, I usually only get two days of feeling completely normal compared to two weeks on the EC drugs.
Be mindful of this when you come to have Paclitaxel – most of the time, you’ll be experiencing some type of side effects.
The worse ones for me have been:
- Having to sprint to the loo as I’ve little control of my bowels; that peristalsis movement and involuntary contractions take a hold every day. Luckily, it’s only in the morning so I know after a couple of hours I’m usually okay to venture out.
- The mouth sores in the corners of my mouth and me having to apply Vaseline or Dr Paw Paw every hour on the hour
- The blood clots that seem to come out of my nose – every morning and whenever I blow it.
- Lack of taste so that I don’t enjoy food in the days following chemo. The only thing I can stomach (and still taste) is the Greek salad that VIP makes me. There is a silver lining to losing my taste and appetite of course – weight loss!
- Daily nausea, although I control this by taking Domperidone tablets.
- The severe exhaustion. I have chemo on Thursday, I sleep for a couple of hours (if that) on Thursday night because the steroids keep me up. The following day I’m still on a high and then at about 3pm, the extreme fatigue hits. This wipes me out from Friday night and for most of the weekend and I try to rest as much as possible over the weekend. On Sunday late afternoon, my energy levels start picking up again and I start feeling normal by Tuesday. And then the whole chemo cycle starts again on Thursday.
- Pins and needles in my fingers and some numbness, although it hasn’t stopped me from picking things up or operating my hand as normal.
- A sore throat with a cough throughout the week.
- Facial and body flushing; my hot sweats are usually immediately followed by feeling cold. These affect me on a daily basis and I’m forever wrapping myself up or throwing off my clothes!
And that’s pretty much it. It might seem that I’ve a lot to deal with, but I firmly believe in a positive mindset. In the scheme of things, the side effects are just little niggles.
They’re annoying, yes, but apart from being stuck on the loo or resigned to my bed due to the exhaustion, they don’t stop me from living my life as normally as I can possibly can.
As I said at the start of this post, I haven’t written about having cancer much in the last six months. Having cancer is very much a personal journey; some people like to share everything – warts and all – and other people like to pretend it’s almost not happening.
I definitely fall into the second category. In the last six months I’ve literally thrown myself into my new publishing business and I believe to a certain extent that this has been my saviour.
Along with my business partner, we’ve quickly grown our business into a five-figure profitable company – one where we’ve both been able to pay our own mortgages and not have to rely on our partners. That takes hard work, dedication and pure grit.
One day, when all this cancer treatment comes to an end (not long to go now), I’ll be able to look back and acknowledge how far I’ve come.
For the time being, I just want to inspire people and let them know that having chemo doesn’t have to mean that you put your life on hold.
If I can launch a new company, turn it into a profitable business, raise a family and run a blog post all at the same time while undergoing months of chemotherapy, just think what you’re capable of.
Remember, the level of our success is limited only by our imagination – and if you think you can win, you can win!
Whatever happens, don’t let cancer or cancer treatment be an excuse for stopping you doing the things you want to do. If it stops you temporarily, it’s just a blip. Be patient and kind to yourself and know that it’s just a little bump in the road.
I’d love to know your thoughts on staying positive while going through challenging times. Yes, it’s perfectly normal to crumble every now and then – we’re only human after all! But as long as we stay mostly positive, then we’ve a better chance of dealing with (and overcoming) most of life’s challenges.