As many of you will know, I was diagnosed with breast cancer in March and ended up having my first chemo session in May.
Prior to this I underwent a lumpectomy, an operation to remove the cancerous tumour. But it’s not uncommon – depending on the tumour’s size and type of breast cancer to have chemotherapy first before a lumpectomy.
Of course when I talk about what to expect from your first chemo session (and the weeks that follow), I’m talking about my own experience. Everyone is different and everyone reacts differently too.
I’ll be describing in detail what happened during my chemo, how I felt, how I felt in the weeks that followed, the side effects I experienced, plus learning lessons and top tips.
In terms of my chemo treatment, I am undergoing 12 weeks of EC drugs (EC is the name of a chemotherapy combination made up of epirubicin and cyclophosphamide) every 21 days, followed by a further 12 weeks of Paclitaxel (Taxol) drugs administered every week, then a course of radiotherapy.
By November (should everything go to plan), I should have completed my treatment (albeit having to take daily Tamoxifen tablets for the next five years), but by 2020 I’ll be ready for a new year – and I’ll be making the most of it!
The chemo preparation
The day of chemo I felt normal – just normal. I’d recovered from my lumpectomy a few weeks earlier and I was ready to make a start. In my mind, the sooner I started, the sooner I’d finish.
But just prior to chemo, I also had to endure a whole host of dentist work (they tell you to get any dentistry work over with before treatment starts).
Because I had chipped a tooth, I went to the dentist to have it fixed. Little did I realise that I’d also need one root canal, two tooth extractions and two fillings to see me through to the end of the year when chemo finished. It was a painful two weeks – especially the tooth extractions which didn’t come our easily – but by the time my first chemo session came around I was feeling back to normal, albeit on soft foods.
Because I hadn’t yet had a PICC Line fitted, I would be given the drugs straight into my veins with an injection for the first session. By the way, a PICC Line stands for ‘peripherally inserted central catheter line’ and is threaded along the vein in your arm until it is in a large vein in the chest. It basically means you can just go in and start chemo treatment straight away each time without them first having to find your veins to inject you – this is more beneficial for someone like me who has to undergo a lengthy treatment with very strong drugs that are particularly harsh on the veins.
There are a couple of downsides to having a PICC Line of course – you can’t go swimming or have a bath; instead for showers you have to wear a special sleeve. The PICC line can be quite uncomfortable to sleep with (if you don’t find a comfortable position) and you have to go to the hospital every week to have the dressing changed and the cap at the end of the line replaced to reduce the risk of infection. The line is also flushed regularly to prevent it becoming blocked.
The good news to having a PICC Line is that the chemo drugs are administered much faster – straight into the chest, limiting the damage to the veins and you won't feel like a pin cushion every time you have chemo!
Prodded and poked
On my very first chemo session, when I walked into the chemo suite I was told to take the last remaining chair – it was a busy Thursday morning and the place was buzzing.
A nurse came over to ask if I’d had tablets yet. By the look on my face, she realised they hadn’t give me any and proceeded to explain that exactly one hour before my chemo started I would need to take tablets. Well, I wasn’t going to sit in the chair doing nothing for an hour, so I decided to take the tablets then head to Sainsbury’s next door to get some shopping done.
On my return the nurse tried to find my veins and insert the injection, but after THREE failed attempts she gave up. This wasn’t a particularly pleasant experience as one of the injections stung to high heaven and I winced involuntarily as it brought tears to my eyes.
The head honcho (Grant) was called in to find my veins and in less than two minutes, he’d found the spot and got the cannula in – with very little discomfort. Oh how I wish he’d have done this in the first place!
They then hooked up one of the drugs on a drip, while the other one (which was bright pink and looked like a huge syringe) was fed into my cannula via a machine. Every time the tube ran out the machine would bleep and they’d come over and change it, which happened three or four times.
When the liquid started to go in I could feel its cool sensation as it entered my veins – only momentarily, but it was a strange sensation.
A lady popped over to see if VIP and I wanted a tea/coffee and to take my lunch order, which I wasn’t expecting so that was a lovely surprise.
Shortly into the treatment I felt my veins starting to sting ever so slightly. This is common and you can tell the chemo nurses your veins sting and they’ll reduce the flow of drugs into the veins to stop it. As mine wasn’t that bad, I didn’t say anything and the sensation soon went away.
And for the rest of it, I sat there not feeling very much at all. In fact, I felt very normal. So normal in fact that VIP decided to get on with his marking while I decided to get the laptop out and do some work!
All in all, the treatment probably took about one-and-a-half hours. When I’d finished I needed to go to the loo (I’d drunk a LOT of water before I went in t try and plump up my veins as no-one can ever find my veins – apart from Grant it seems), so I was busting!
As I turned to flush the loo I noticed bright red in the bowl. “Damn it” I thought, believing that the time of the month had come round. But then I realised that the time of the month had only finished two weeks earlier.
I stood there perplexed for a while and then it dawned on me that it must have been all that bright pink fluid that had been injection into me. I checked with Grant (just to make sure) and I was right – so if you’re having the EC drugs and your wee is bright pink, don’t be alarmed!
When I left the hospital and got my home I started to feel a little spaced out – and if I’m honest, a little bit drunk. This was unfamiliar territory to me as I don’t drink (only once in a blue moon!), so it was a strange sensation. So when I got home, even though I carried on working, I was resting on the sofa and not doing much moving.
The side effects of chemo
The following day I was absolutely fine, the day after that was also normal and then, on the Sunday afternoon – so around two-and-a-half days after chemo I suddenly felt very lethargic.
Let me point out here that for three days following chemo they give you a whole host of tablets to take. Mine included Emend (aprepitant) `Domperidone, Ondansetron and Dexamethasone, and were basically a mix of anti-sickness and anti-inflammatory tablets plus steroids.
The first night after chemo I slept like a baby, the second night I was up at 3.20am, the third night I was fine and then the fourth night I was up at 1.30am and couldn’t sleep all night. Be prepared that the drugs will play havoc with your sleeping patterns for a few days afterwards.
The extreme tiredness probably lasted about four days all in all – and coincided with the lack of sleep I was getting. Then gradually it started to disappear and I began to feel more human.
What I did notice was that my joints ached – my wrists and my ankles. Again, this disappeared after a few days, albeit for my right wrist which continues to ache two weeks after my first chemo session!
In the first week after chemo, one of the side effects was a HUGE increase in appetite. I seemed to be hungry all the time and couldn’t stop snacking. On doing some further research, I discovered this is completely normal as the drugs I took in the days following chemo played a large part. Apparently, it’s the reason why it’s common for chemo patients to PUT ON weight while they’re undergoing chemotherapy.
Chemo seems to have stopped me going to the toilet for the first few days (for a number two I mean!), but then after the constipation has passed, it flips the other way and for a good couple of days everything that goes in, seems to want to come out asap – and rather quickly. Luckily, after a few days my bowel movements return to normal.
About ten days after chemo and I’m feeling completely normal. I’m also sleeping very soundly at night. I have an abundance of energy – a bit like I’m on steroids but I’m not. I’m in a good place and I hope this lasts.
Two weeks after chemo two new side effects creep in. Although I’m sleeping really well, I start waking up early again – between 4.30am and 5.30am and I’m wide awake. This isn’t that bad as again, I use the time to do something productive and I just make sure I go to bed a little earlier in the evening.
The second side effect is my sore mouth. I had heard about this and hoped that it wouldn’t effect me, but it seems like it has. My mouth feels permanently sore (probably not helped by the dental work I had done just before chemo), but my gums are very sensitive and cracks have appeared in the corners of my mouth. I feel like I’m moisturising them every five minutes!
Again, it’s a common side effect. Chemotherapy drugs kill cancer cells, but they also harm healthy cells, including cells in the mouth. You’re more prone to a sore or dry mouth, ulcers, taste changes and mouth infections. The bottom line? Eat a balanced diet, use a soft toothbrush and make sure you’re on it when it comes to dental hygiene.
I hadn’t really noticed much taste change in food, but I do remember having my first cup of tea straight after chemo and it didn’t taste like tea at all. In fact, it wasn’t very nice. I steered clear of tea for a few days and that seemed to do the trick.
Three weeks after my first chemo session (and the week before I start cycle 2 of my treatment) and I’m feeling totally normal. Nothing hurts, nothing is sore, my sleeping and eating patterns are normal and I feel absolutely fine.
All in all, my first chemo session has gone almost unnoticed. Yes, there have been a few side effects, but let me point out that these are all minor effects – ones that haven’t significantly affected my everyday life – and I think that’s the bottom line. If you can, avoid dwelling on the minor irritations – I deliberately haven’t shared many of these side effects on my social media channels because they are just that – a small annoyance that passes quickly. No point dwelling on them – I’ll save my reporting for the bigger side effects, that I’m sure I’ll soon experience.
Having chemotherapy (so I’ve been told) is cumulative. The more you have it and the longer it goes on, the more the side effects may affect your day-to-day life.
One thing that has irked me slightly while undergoing chemo is the need to take my temperature on a daily basis. This is because at the first sign of infection I need to take myself to hospital to get myself sorted out – getting an infection while undergoing chemo can be serious as it can lead to sepsis.
So my temperature has to be between 36C and 37C. On more than a few occasions it has been 35C and they advise to take another reading one hour later. If it’s not back to normal, then off to the hospital I have to go. Fortunately this hasn’t yet happened, but the whole being vigilant has taken a lot of getting used to – again, I don’t want to dwell on this as a negative – so I’m learning to take it in my stride – and not panic at the first sign of a low temperature!
What to take to your first chemo session
My whole first chemo session only lasted a few hours, but some people’s chemo takes longer (and if you’ve opted for Cold Cap Therapy – to prevent hair loss), then the treatment is longer still.
I decided against it as I’d heard that the cold cap can give you severe headaches and having suffered from migraines since puberty, I could do without any more grief in this department.
So here’s a list of what I found useful to take:
- Food – your chemo suite might provide lunch but check beforehand. It’s definitely worth bringing snacks though.
- Drinks to keep you hydrated
- A magazine or book
- Your phone/laptop if you feel like working or checking emails
- Lip balm, cuticle cream (Dr PawPaw is a favourite of mine – it’s a multipurpose soothing balm for lips, skin, hair and cuticles) and I also use Organic Nail Nectar from Tropic as I’ve heard it can help prevent brittle nails during chemo – a common side effect.
- A blanket or extra layer in case you feel cold
- Headphones or earplugs (to listen to music or to meditate)
Other things you should know
Before you have your first chemo session (and for all subsequent sessions of chemo), you will need to have your bloods tested (a complete blood count), which measures your white blood cell count, white blood cell differential and red blood cell count. This is to make sure that your body is well enough to take the chemo drugs.
To make it easier for the nurses to find your veins (and so it’s less painful for you), try to drink as much water as you can a few days before you go for your first chemo session.
As I mentioned, the drugs you take in the days straight after your first chemo session might affect your quality of sleep. Some people won’t understand why you can’t “roll over and go back to sleep”, but my advice is do what you feel. For me, if I can’t sleep, I’d rather be productive than lie there for hours feeling frustrated that I can’t rest. So I’ll get up and work on my laptop. Even though the tiredness will hit me big time later that day, I’ll feel smug knowing that I didn’t waste the hours tossing and turning. I simply turned it to my advantage. Every cloud and all that. You may not want to follow suit, but you could get up and watch some TV or read a book – or even meditate. Whatever you feel like doing you should do. And if you can just roll over and fall back asleep – even better!
Don’t go into chemo with any expectations. Be aware of how you MIGHT feel, but as I said everyone is different. The best advice I can give is to take everything in your stride. You have absolutely no idea how you or your body will react, so don’t try to anticipate this. Understand that chemo – despite poisoning you and those blasted cancer cells, is working towards making you better. You will have to get over the bumpy road before you hit that smooth patch again.
Focus on the end goal. Picture yourself healthy, happy and keep that picture in mind during your worst times if you can.
You wouldn’t believe how having a positive attitude (most of the time anyway – we’re all human!) can see you through some tough times.
I'm happy to answer any questions – feel free to leave me a comment below or you can email me if you'd like to keep things more private.
Here's a video I made of my breast cancer announcement:
A Pin For Your Health Board
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