What’s the first round of chemotherapy like?

It’s October already – can you believe? On this day (2 October) last year I had my first chemo session. Many people remember the date of their operation but for me the 2 October is etched in my memory.

It was a day I’d been building up to since my diagnosis and there were so many unknowns and anxieties around what would be involved that I thought I should share what that first chemo session involved and hopefully it’ll help ease some of your apprehensions.

My first session was booked in for 10am and we were told to allow six hours for the appointment. This is so the nurses can monitor for any reactions to the chemo drugs.

We arrived early (as is always the case when my mum’s involved!) to be warmly greeted by the welcoming reception team (these guys have put endless smiles on our faces over the last 12 months). When we were called in, we settled ourselves into a bay where there was a large comfy chair, visitor chairs and drip holder.

The drugs

NB – these are the drugs I received but they may not be what you are prescribed. Your breast care nurse will go through your specific drugs and the side effects before your first chemo session.

First up was the herceptin, which is given as an injection in the thigh. It’s a slow injection (takes about 60-90 seconds), which is pretty painful as injections go but they inject it gradually to try to ease the tingle. They give you this first as this is the drug they monitor you for six hours for.

I’ve had 17 of these injections now – a year’s worth at three week intervals, which I think is pretty standard – and the first was definitely the worst. Once you know what to expect, it’s easier. I found these bruised my thighs (they alternate each time) but the bruising goes after a few days.

Next I was given some steroids via my PICC line – we’ll talk PICC in my next blog. This was the weirdest sensation – the steroids made my nether regions tingle, something I really hadn’t expected. At the same time I took some anti-sickness drugs. Both of these are to ease your reaction to the drugs.

Each chemo session you will be given anti-sickness drugs. You’ll also be given steroids to take in the days leading up to your next chemo but on the first session, you’ll be given these intravenously.

After the steroids, I had some saline (salted water) solution through the PICC to flush the line. Then it was on to the docetaxel, which was hung up to the drip machine, fed to the PICC and timed to drip over an hour. The vein around the PICC can feel cool, where the liquid, which has been refrigerated, enters but other than that, you don’t feel a thing. If you do feel any pain around the site, it’s important to tell the nurse as they can check the site and slow the drip to ease the pain.

Whilst you’re having the docetaxel, the nurses will monitor you for any reaction, including rash, itchiness, swelling, dizziness or sickness but the steroids are given to try to stop any reaction.

After the docetaxel, it was time for another round of saline (you’ll probably need to toilet multiple times throughout the day as you’re being given lots of liquid intravenously). The saline is also fed through a drip to the PICC so you just have to sit tight and relax. You can walk around with the drip so if you do need to pop to the loo, you can.

The third and final drug for me was the carboplatin, which is also given via a drip to the PICC line over the course of an hour or so. The drug comes in a liquid bag, like the docetaxel, but is covered by a black bag to protect it from the light. The drug is more effective if it’s protected from light.

Finally, before they let you go home, you’ll be given a huge bag full of drugs and directions of when to take them. This is pretty daunting, I won’t lie. There’s a combination of steroids, anti sickness tablets, sickness injections and tablets to help with constipation, should you need them.

You’re then free to go home.

How did I feel going home? 

I left feeling fine, nervous but fine. And the day after I felt fine too, just tired. The drugs really took effect two days after chemo, when I felt exhausted, nauseous and my mouth was full of ulcers. It’s a feeling I have never felt before so I can’t give you much insight but I could feel the drugs travelling to every part of  my body – to my ears, my gums, everywhere. Everyone’s reaction is different – some people continue as normal and others struggle. I struggled but you may cruise through it – I hope you do.

My tips for your first chemo session:

Take some snacks and something for lunch. You’ll be there all day so need sustenance – anything with ginger in is good for nausea – I went for ginger nut biscuits!

Take a good book, some sudoku or crossword games, your tablet or anything that will keep you occupied throughout the day. Mum and I used the iPad to shop online for Christmas pressies, which was a lovely distraction from what else was going on.

Try not to worry – it’s really not as bad as you imagine

Go through the list of drug timings with the nurse as many times as you need and make additional notes on the instruction page they give you. You need to get this right when you’re home it’s easy to forget what they told you several hours ago – especially with so many drugs.

When you get home, make a note of what drugs you’ve taken from the bag of delights and write a list of when you need to take the others. Tick each drug off when you’ve taken it. You won’t want to miss a dose and when you’re tired and have chemo brain, it’s easily done.

Be gentle with yourself in the days that follow. Listen to your body and rest.

Do you have any questions ahead of your first chemo session? I’ll happily answer any questions I can. 

Thanks
Becky xx

Packing a hospital bag for cancer-related stays

The optimist in all of us tells us we’re not going to end up in hospital after a dose of chemotherapy but the chances of it happening at least once over the course of treatment are pretty high. I ended up in hospital after half of my chemo treatments and learnt that having a bag packed ready was a good idea – an idea I didn’t have at the time!

Each time I rocked up at the hospital I went without a bag – you’d have thought I’d have learnt after the first and second times but no, not me. And that’s just it – during treatment your brain isn’t functioning at 100% so I though you might find in useful to learn from my mistake…

My advice would be to have a hospital bag packed and ready to go before you go in for your first chemo treatment. Pack it the day before treatment, when you’re at your healthiest and leave it in a safe place but out of the way – the spare room or your wardrobe perhaps. You’ll need to add your medication but it’s best to do that when you know you’re going into hospital.

Relatives can always pack a bag for you but often things get forgotten and there’s nothing like being prepared.What should you pack? Here’s my essential list:

  • Toiletries like your tooth brush, tooth paste, deodorant and sanitary towels (I’d suggest packing these even if your periods have stopped/been suppressed)
  • A nice soft towel – the hospital provide towels but you’ll get comfort in your own
  • Flip flops for the shower – in my opinion these are an absolute must
  • 2/3 pairs of comfy pjs and a week’s worth of knickers
  • A dressing gown – I found this useful at night when I was cold but also when the porters take you for scans and x-Rays at the other end of the hospital
  • Slippers and bed socks are a must. Take a couple of pairs of bed socks
  • A couple of comfy hats/scarves/caps – whatever you prefer wearing. Even if you have your hair, I’d suggest packing a couple if you’ve been told you’re going to lose it
  • Easy reading magazines and easy read books. I didn’t really want to read but having magazines to flick through kept me entertained
  • Jacobs dry crackers or something similar – it’s handy to have some food at hand for when you’re able to eat but not able to face the hospital food. Something very basic like dry crackers is best for your tum

Things to ask friends and family to bring:

  • Lemon and salt (sorry, no tequila here). It’s really good to add lemon and salt to water if you’ve had diarrhoea
  • Magazines and more magazines

What not to bring:

  • Treats like sweets and biscuits are likely to be off the list. Even if your taste buds insist on sugar, the doctors may well warn you against it as it can unsettle your vulnerable stomach

What did you pack that was really useful? Let me know in the comments below and I’ll  add it to the list. Thanks, Becky xx

 

Getting back to fitness after chemo

I’ve always enjoyed running but in the year before my breast cancer diagnosis I was running more than ever. It was a great way to get some exercise and made my commute from East London to Surrey far more tolerable. And now, living on the coast and being able to run along the beach makes exercise even better.

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Ahead of starting chemo I’d hoped to exercise throughout the treatment or on week three of each cycle, at least. But when my body was being put through its paces, chemo paces, getting to the gym or going for a run couldn’t have felt more impossible – basic tasks left me out of breath so their was no puff for running and the like.

Whilst I absolutely wasn’t capable of physical exercise, it didn’t stop me craving a run along the beach. The fact that other people having chemo were managing to exercise and, in some cases, run 10k races days after treatment made my frustration worse. In the days following chemo I was often found in a hospital bed, which goes to show how differently we all react to the drugs.

The fact that my reactions were quite severe made me even more determined to get exercising as soon as I could. The weight gain side effect of the drugs is also a huge motivation for me to get my heart pumping and muscles working hard, so much so that I signed up to two 10k races – Cancer Research’s Race for Life in Bournemouth in June and Cardiff in July – before finishing my course of chemo.

At the time of signing up, I wasn’t sure if I’d be able to run them – when you get out of breath walking 10 paces, a 10k couldn’t feel like more of a challenge. I also had radiotherapy to go and wasn’t sure how I’d react. I’m now 12 days into four weeks of radio and whilst I’m still not 100% certain I’ll be running a decent 10k by June, I’m determined to give it my best.

So how do you get from zero to 10k in five months?

The eight week training plan from Women’s Running is my starting point.

I printed out the plan and joined the gym for a month to run on the treadmill. The first gym session involved running for a minute and walking for a minute for 20 minutes. The running-walking thing lasted for five minutes before I felt like my teeth were going to fall out from exertion so I walked for the remaining time. After three more gym sessions I managed the full 20 minutes of alternate walking and running – in the space of a week I’d come along way. It’s amazing how quickly the body adapts.

Running on a treadmill isn’t my idea of fun and now the weather is starting to feel spring-y, I’m back to beach running. The sun and the view really lift my spirits – I feel so lucky to have such a beautiful setting at my feet.

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With the beach calling and the sun beckoning, I’ve been on four four-ish kilmometer runs this week, which have taken about half an hour, including pauses for breath and a couple of speed walking intervals.

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My bloods are starting to get back to normal so breathlessness is less of an issue but keeping up the endurance is definitely a case of mind over matter. Whilst there’s no shame in stopping for a break, I feel like it’s my brain stopping me and not my legs. That said, it’s really important to listen to your body and taking it slow and steady is essential. That’s why I’m really proud of my ‘measly’ 4k. I’m getting into my rhythm and it’s going to get easier but I’m being sensible with my body. My next goal is to make the 5k run to Boscombe pier by the end of next week – I’ll let you know if I make it!

If you’re looking to get back to fitness after chemo, it’s worth speaking to your oncologist. My oncologist suggested starting with stair walking or getting a step for exercise if you live in a flat. Also, lots of gyms offer a free month or two for people referred by their doctor. I was really excited about this (I know, I need to get a life) but be warned, the gym may take their time in setting it up (I’m still waiting for my free membership weeks after being referred by my doc).

Good luck with your journey back to fitness and let me know how you’re getting on

Becky xx

 

The day I thought would never come is finally here

Today, the 15th January 2016, brings my final chemo session – yippie, whoop, harrah!

It brings a feeling of elation as well as a battle to hold back tears of happiness and gratitude that I am able to say my chemo is coming to an end, hopefully forever.

I feel like I’ve reached a HUGE milestone and learnt so much about myself along the way so what better time to share a bit of the journey to get here than today.

It’s been a challenging ride. Even before chemo began the not knowing what to expect was bizarre; there are many different drugs and everyone reacts differently, so other peoples’ experiences were often lost on me.

Then there was the first round of chemo. From the moment they administered the first drug – Herceptin followed by Docetaxel and Carboplatin – I was waiting. Waiting for something to happen. Am I going to vomit (my main concern)? Am I going to feel fluey? Is my hair going to fall out right now (I’d brought a headscarf just in case)? Little did I know that any reactions experienced in the oncology bay would be the least of my worries.

It wasn’t until day three that I really felt the chemo hit – the mouth ulcers, the hot flushes, the exhaustion, the sickness. Looking like a cross between a 15 year old boy and Sandi Toxfig didn’t exactly help my morale either thanks to an outbreak of steroid induced spots and my newly cut barnet. Talking of hair, that was another waiting game – when would it fall out?

The second round of chemo came and alas – Sandi Toksvig was as thick as ever and showing no signs of going anywhere. I was beginning to feel like I’d aged myself 20 years for nothing. Still I’d heard the effects of chemo could build and so the apprehension was ever present.

I was wrong about Sandi, she wasn’t as stubborn as I’d given her credit for. The hair loss started slowly after the second round – malting just a little more than usual. A week later and it was coming out in clumps EVERYWHERE!

Round two brought my first hospital stay. I’d caught an infection but I was also neutropenic (low white blood cell count) so I couldn’t fight it. The drugs worked wonders and I was allowed out on my birthday, feeling a million dollars. My first port of call was to the hairdresser. The time had come to shave what was left of my balding scalp – on my own terms. My hairdresser, Tasha, was amazing – we had a laugh (see ya later Sandi) and there were no tears. There was no charge either. It’s times like these you realise how kind people can be.

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My new look

Round three brought another hospital stay – the biggest test of all. On arrival to the hospital my dad had to practically carry me to the ward, I’d never felt so weak before. Unfortunately I had to get worse before I could get better but I did get better, thanks to the fantastic team of docs and nurses.

After round three I was terrified of the next dose and the end had never felt more distant. Luckily my oncologist was on a mission to keep me out of hospital, warning me that chemo can kill (like anyone needs to hear that?!) so they couldn’t risk another hospital stay. Her stern words came with an adjusted dosage of the relevant drugs and boy has it made a difference. The last two cycles haven’t been fun but they’ve been easier than before and I’ve stayed out of hospital (phew). I’m hoping round six will be no different.

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We did it – Team Jones (with mum taking the photo)

So here I am, finally the day is here. I now have three weeks until my last cycle finishes. Now all I can think about it how much I’m looking forward to sipping some celebratory prosecco (pass me a pint glass) and seeing fewer bodily fluids – I’m over that lark, thank you very much!

How would you describe your chemo experience? How did you feel when it came to an end? I’d love to hear your experience in the comments below.