chemotherapy survival guide

Breast cancer lesson 157: It takes time to heal

I have lost a nail. Now, if this had been as a result of an ill-timed run up the stairs or poor football move, it wouldn’t exactly be headline news. But, given this is the first chemo nail to fall (a toenail thankfully), it is a moment I feel I have to acknowledge.

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It’s five days on from the end of active treatment and I feel I having been making good ‘moving forward’ progress. The cards are down (although Duncan now thinks the living room is so bare it looks like we are moving out not just on)! The house is so clean you could eat a meal off the floor (not something I am going to test mind you). And, I feel fitter, healthier and a little bit hairier.

The nail incident, however small it may seem, is a sign though that cancer (or more specifically its treatment) isn’t quite done with me yet!

It does feel a little mean that you can often start looking a little worse for wear when you’re not actually being treated. I am currently on ‘boob watch’ to see whether the radiotherapy is going to do any real damage to my skin (it is just a bit red and angry at the moment). I still can’t sleep properly. The menopause is still in control of my body. My hands and feet still feel a little disconnected. And now, it seems, I am also on ‘nail watch’ (which currently involves tapping and fiddling with my nails every five minutes to see if anything else drops off). At least my hair has a thin covering of hair to keep me distracted.

The thing is, to a cancer patient, nothing about the above is particularly unusual. We understand the side effects will last for a while (and signed a form to let them). We know that underneath the smiles and the ‘back to normal’ activities we may have to cope with pains and twinges. We know it will take time for us to trust our bodies to know a cold is just a cold and a cough is just a cough. We know our lives, while brighter and enriched in many ways, will never quite be the same again.

Today, it was just a nail. Tomorrow, it may be something else.

One day, I will want to forget. For now, I need to remember, so I can give my body the attention, the tools and the time it needs to heal.

I hope you’ll give me time too.

Breast cancer lesson number 116: How to do nothing – and not feel guilty about it

The worst kind of day on chemo is the kind that starts with you already wishing it was over. That’s the wish I expressed on the corner of my mum’s bed this morning when I was talking through my restless night, the peripheral neuropathy, the cramping of my hands and feet, the chronic fatigue, the feeling of heaviness (yet also emptiness) and the loss of taste I am currently experiencing. It’s a feeling the day is already wasted before it has even begun. If life were a pack of cards, you’d want to reshuffle and pick again. Trouble is, you can’t.

Strangely, it’s not the pain or the exhaustion I fear. It’s the guilt. Guilt for spending the day without the structure of a to-do list. Guilt for making ‘eating a banana’ an actual objective. Guilt for giving up on another precious day of life when my life itself was challenged just a few months ago. Guilt for seizing up rather than seizing the day. Trust me, that’s a lot of guilt. 

Of course, I have nothing to feel guilty about. Only yesterday, was I lying on the kitchen floor with my legs in the air after nearly collapsing. I have a fridge full of injections and a body full of pills. And, eating a banana when you have no tastebuds is actually something to be applauded. I just wish doing nothing was an art form I had mastered long ago.

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Taking time to do nothing has a way of bringing everything into perspective. Having sat here on the sofa for the last three hours – moving only to shed or add clothes and eat – I am starting to realise that you can get something from nothing. Because nothing is never really nothing. Nothing today is my body’s chance to recover. Nothing today is life’s little way of getting me to slow down so I can be strong again. Doing nothing today gives me a better chance of making something of tomorrow.

Google the definition of nothing and, under adjective, it says: ‘having no prospect of progress.’ In chemo terms, I would say a ‘nothing day’ is quite the opposite. It’s a necessary pause. And, if chemobrain is an issue, it’s probably the safest thing to do. 🙂

From this day forward, I, Jackie Scully, promise to do nothing if nothing is the right thing to do! And, I would urge you to do the same – unless you’re an extreme procrastinator and really should keep busy. 

How to start? I have been saving the Game of Thrones boxset for just such an occasion. I may be gone for some time…

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Breast cancer lesson number 115: Think positive and positive things will happen

Strange as it may sound, I am starting to enjoy chemo day. This has nothing to do with being hooked up to toxic drugs and a saline solution (oh yes, the beautiful saline) or visiting the hospital (third day in a row) and everything to do with the positive routine I have established for myself.

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It starts – after a steroid-fuelled restless night – with the baking. Today, we tried out a chemo cookie recipe from one of mum’s beautiful friends alongside an experimental lemon and ginger muffin recipe (complete with ginger and rhubarb jam tucked away inside). Both were topped off with a drizzle of melted lemon chocolate. It always feels good to do something for other people and the thanks I got at the unit today meant the world to me. I know some of the cookies ended up as one nurse’s lunch (she was too busy for a break). I also got a wonderful phone call earlier thanking me for my latest pink heart, so I have pretty much smiled all day long.

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Next up is a good walk. By Sunday, I will probably find it increasingly hard to get round Greenwich Park due to the bone and muscle pain, so today is a good day to make the most of my legs while they are still working! In the absence of tastebuds, exercise has been my comfort eating. I do it to feel better and it is certainly does wonders for the waistline and the soul.

People often worry about what to eat before chemo. For me, I like to keep things simple. A bran-based brekkie keeps the constipation at bay and a simple lunch (with an afternoon appointment) means you go well fed, but without having eaten anything you’d avoid for life if you saw it again. My time at the chemo unit is always packed with planned-in treats!

By the time I reach the hospital, I am ready for action.

For those who have never been to a cancer day unit (and I hope if you haven’t, you never will), here is a quick glimpse behind the scenes:

1)     First you arrive, book in, hand over your appointment card and receive a hospital wristband in return (printed out of special wristband paper).

2)     Next, you wait in the lounge (this time in front of Wimbledon) until the drugs have been delivered and the chair is ready.

3)     Once in the chair, the nurse allocated to your zone takes your blood pressure and checks the oxygen levels in your blood.

4)     Providing all is well, the anti-sickness meds (Emend and Domperidone in my case) are administered.

5)     Once they’ve settled in the stomach, the PICC line is flushed and the drugs are hooked up to both a pump (so they can be released over time) and the PICC tube.

6)     Then (with Docetaxel), you get a good hour to eat (lollies and muffins), drink (tea, water and hot water) and chat.

7)     Summoned by incessant beeping from the pump, the nurse comes back to do a final saline flush.

8)     After everything has been disconnected, the rucksack-sized pharmacy bag arrives, complete with eight injections, and enough pills to make your stomach rattle.

9)     Before being released, the last job is to pick up the appointment card. We think mine may have gone home with another Jackie, so I had a nice new one to take home today.

And that’s it. Providing you don’t have an allergic reaction to the drugs, it is a fairly pleasant experience.

Back home, I am happy in the knowledge I have five behind me and just one poison to go. I have started planning my last chemo day (let’s ignore the fact I have radio and 10 years of hormone therapy for the moment) and I am pretty excited. This is the last cycle that ends with another poisoning. And that means the end of chemo (albeit six weeks away) is finally in sight.

It’s been a happy Friday for me. And, I hope it has been a happy Friday for you too!

Breast cancer lesson number 114: Keep your face to the sunshine and you won’t see the shadows

With four rounds under my belt, the day before chemo is now less a time for thinking about the side effects desperate to keep me awake over the next two weeks, and more a chance to enjoy a bit of normality before the poison starts to flow. With chemo five scheduled for 2pm tomorrow, I’m feeling positive.

The good news is I know what to expect. And the bad news? It’s Tax and not FEC that awaits me in the chair (who would have thought I’d be craving pink rather than sugary sweet pee)! Three weeks ago, I was pumped up on steroids worried (and rightly so) about the new Docetaxel regime and the impact it would have on my body and my life. Three weeks on, having narrowly avoided A & E and experienced a whole raft of side effects (bone pain to me feels like my bones are growing out of my skin, which is certainly an unusual feeling), I am ready for the next one. When you don’t know what’s coming, it’s hard to prepare. Now, I fully intend to take painkillers and fluconazole before I get any side effects, to stop them in their tracks. After all, prevention is better than cure.

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So what do you do on a pain-free and as-normal-as-you-can-feel-on-chemo day? With steroids egging me on, I have cleaned, written pink heart messages for two of my medical team, had a massage, enjoyed a rather exciting yoghurt shake and, most importantly, made the most of the sunshine. Together with a walk to the train (I walk to the third station on the line now not the one behind my house to help the weight and the wallet) and a jog/walk around the park, my mum and I have banked around 15km. She thinks she comes up to care for me and what actually happens is she gets roped into a workout! Right now, I feel I could take on the world, but I think I will just focus on taking on the clear toxic infusion that’s dying to find its way into my PICC line.

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Thank you sunshine for giving me the motivation to hit the training ground (aka Greenwich Park) and keep my spirits up. And, thank you mum for keeping me company. I am £15 off my £1,000 fundraising target and I hope that, barring a big infection or debilitating side effects, I will be on the start line (and the finish line) on 13 July to do my bit for Breast Cancer Care. I feel proud of myself that, before my diagnosis, I had never thought about (let alone trained for) a 10k. I also feel proud that I am exercising more on chemo than before it! That’s certainly a reason to smile, even on a cloudy day.

Chemo, I feel fit and I feel ready (just ginger baking left to go). After tomorrow, there will be one left to go!

Breast cancer lesson number 113: Being strong sometimes means not holding back the tears, but letting them fall

Today, I took my brave face and my busting-at-the-seams pink notebook – complete with list of side effects from Tax – to the oncology clinic. As I sat there reading them out and describing the last three weeks, however, that brave face quickly fell away.

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Knowing that this is the first day of my #100happydays project (you can read lesson 112 here to find out more), you’re probably thinking I’ve had a bit of a false start. But, I have to say that having a good cry in front of my oncology nurse was actually rather liberating.

It’s often hard to successfully describe symptoms when you’re no longer experiencing them. But tears never lie. Reliving the panic I felt the night my temperature spiked teased out those teardrops. Describing just how hard it is to spot the symptoms and determine what is and isn’t serious accounted for more than a few extra drops. And, discovering that my liver may be struggling with the chemo and that they may need to lower to dose to stop it being damaged permanently, certainly increased the flow. (Fingers are crossed for Friday chemo). 

For me, these tears were an acknowledgement of the fact cancer has shown me just how fragile life really is. One day you’re just another person trying to decide which kind of breakfast cereal to try. And then all of a sudden you’re a patient with no hair, clutching a thermometer hoping you don’t have a potentially fatal complication. That is, after you’ve got rid of the cancer! Life is fragile and oh so precious. And, having a good cry about that fact made me feel so much better. 

I did learn a few interesting facts once I had wiped away the tears. Firstly, when on Tax, the temperature thing is a slight red herring. Not hitting 38 degrees that night was no reason not to call the out-of-hours registrar. If you feel unwell, you need to pick up the phone. I also learned that, as well as lowering the dosage, they can transfer me to a drug called Paclitaxel (on a weekly infusion) to try and lessen the side effects. The prospect of another six chemos instead of two made me resist this option, but it may be something to revisit if chemo five is as brutal as four. I also learned that I should carry tissues more often. NHS paper towels aren’t so kind on the eyes! (Coincidentally, the opportunity to buy some came moments later on the train home when I was approached by a lady selling them to feed her children. Good will and soft tissues works for me.)

Of course, I did find more than a few happy moments to offset the tears. I had a good chat with the nurse about her PHD and how different patients respond to the same information. I had a lovely cup of tea in Greenwich with a thoughtful friend (who bought me such beautiful flowers), received a beautiful e-card from another and have just spent the last few hours eating birthday cake (not constantly I hasten to add) and watching my nephew (to be) stack plastic doughnuts. The icing set nicely on the cake too. In a strange way, being reminded of the fragility of life made me even more grateful for the little details it had to share with me today.

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We, none of us, are guaranteed a tomorrow. But that doesn’t mean we should hide our tears today.

There is also no greater smile than the one someone gifts you when you still have tears in your eyes.

Breast cancer lesson number 112: Today is a gift. That’s why they call it the present.

Long before chemotherapy got hold of my veins (back in lesson number 19 to be precise – click here to read), I described happiness as a little moment in time that makes you smile. Happiness is a piece of cake on a cold and rainy day. Happiness is a flower in bloom (with an extra smile if you grow it yourself). Happiness is sitting with a good book in a comfy chair. Happiness is a cup of tea you can taste – and preferably one that doesn’t bring on a hot flush. Happiness can come from nothing and mean everything.

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I have calculated that, all being well, I have around 100 days left before I can declare active treatment officially over. And, if I’m honest, it’s getting hard to greet every day with a smile. That’s not because I’m not remaining positive when I can, but I think the sheer volume of appointments, needles and pills and the ever-increasing list of side effects is starting to catch up with me. I can’t look in the mirror without seeing cancer. I can’t look at my hands typing away without seeing cancer. I can’t even look at my diary without seeing cancer. Every night I go to bed hoping for sleep. And every night it eludes me. Every morning I get out of bed wanting to make a difference. And every morning I am reminded of the fact that now is not my time. And, you know what? It really hurts.

I knew there would come a time when I would have to dig deep. My oncologist warned me of this moment. But, before I get out my spade and hit the soil, I would like to try a new tactic. Many people have recommended the 100 happy days project to me (you can read more about it here). And I think, with around 100 days to go, now might be the perfect time to test it out. The idea is simple. By actively seeking out and photographing one thing every day that raises a smile, the project encourages us to enjoy the moment and cherish those little details.

When the next round of bone pain descends, I want to remember the Dahlia flowering in the garden not the next dose of painkillers (although I don’t want to forget them otherwise there would be trouble!). I want to remember the things and the people that transport me far away from the drugs in my bloodstream.

With my next round due on Friday, you might think now is not the time to take the challenge. But I think anything that distracts me from the prospect of injections, muscle aches, taste changes and sore throats can only be a good thing. I believe you can be happy and have bone pain! I don’t want to spend the next 100 days thinking about the life I want. I want to enjoy it now. The big picture is not for now. The small details are what matters. 

As a quick dress rehearsal, here is a beautiful cup of flowers that reminds me of a wonderful two hours spent with a friend this morning. For me, this is less a cup of purple flowers and more a representation of my friend. It’s beautiful, it’s thoughtful, it’s bursting with life and it makes me smile. 

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#100happydays starts tomorrow on chemo bloods day. I will be posting the photos on Facebook and providing updates on the blog. Question is, are you brave enough to join me (with the project not the blood test you’ll be relieved to hear)? Click here to sign up.

Breast cancer lesson number 109: Strength is believing you can do it, but recognising you don’t have to do it alone

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It’s a strange use for a beautiful cake stand I grant you (and to the lovely friend who bought it for me years ago, please don’t worry, it will be returned to its former glory as soon as I stop rattling). This little pyramid of pills (my portable pharmacy) is not just my ticket to a pain-free chemo. It serves as a visual reminder to me that for every challenge I face, there is someone out there who has either conquered it before me or can prescribe something that will!

I am rubbish when it comes to asking for help. When I spot a side effect my first instinct is not to ask someone who can do something about it, but to research it, determine whether or not it is ‘normal’ and then find my own way of getting through it. Something inside me says: ‘you’re doing really well Jackie so why should you be a burden for an already-creaking NHS system?’ On Saturday, when my temperature hit 37.7 (not 38), I was more worried about unnecessarily disturbing someone on their weekend than I was the fear of neutropenic septicaemia. On Monday, when I called acute oncology to ask for some advice and got no call back, I simply assumed there were lots more deserving patients ahead of me and that I should leave the line open for someone else. I felt bad about emailing my amazing oncology nurse instead. I felt worse when she replied straight away after hours urging me to call the on-call oncology registrar. And I felt even worse when the on-call registrar called me back when I wasn’t presenting a high temperature. Cancer has made me a burden in so many ways and, as a patient (particularly one that doesn’t have too many issues), I find it so hard to know when to ask for reassurance and when to just go it alone.

Yesterday, however, taught me that just because my symptoms are not serious, the illness for which I am being treated certainly is. And, while a sore throat, furry white tongue, hot flushes, painful and sore heels may not sound horrible in isolation, add them all up and throw in a chunk of cancer and there’s certainly no reason to feel bad about asking for help.

Yesterday, I felt less like a burden. On my way into hospital for a PICC line flush, my penultimate Zoladex implant (my side may stop looking like a pinboard soon) and my menopause clinic appointment, I got a call asking me to add in a blood test and a trip to acute oncology. The sore throat I didn’t want to bother anyone with was actually Oesophagitis, meaning I could replace my suffering with some pills (fluconazole to be precise). The nurse examining me was lovely and made me realise that I don’t have to get through it on my own and that a lot of people suffer from similar symptoms (hence the ease with which he was able to pinpoint and prescribe for the problem).

The highlight of my day, however, was the menopause clinic appointment (for which I was just two minutes early – not two months this time). Conditioned as I am to appointments with consultants, doctors, nurses and surgeons who see cancer every day, I thought nothing of launching into a matter-of-fact account of the last six months in response to the doctor’s opening line: ‘Well, I’ve had a quick look at your notes and it looks like you’ve had an interesting year so far.’ I think it was the point at which – realising I had overlooked the whole fertility drugs bit – I threw in the phrase: ‘Oh and then I froze some embryos’ that it struck me. Cancer treatment is not normal. Cancer treatment is hardcore and anyone who endures it deserves a medal not just a follow-up appointment further than a week away. I think it struck her at the point at which I was trying to remember when I last had a period. I couldn’t. My drugs list was also so long, she stopped writing it down!

As I discovered, an oestrogen-positive cancer patient is not the norm down in women’s services. Most menopausal women are allowed hormone tablets to stop their hot flushes. Those tablets may stop the flushes, but would end up fuelling my cancer and we’d be back at square one. When I threw in the fact I would rather avoid any drugs (having heard about them) that contained anti-depressants (albeit at a different dose) that left me with about one option: Clonidine. It’s a high blood pressure tablet that has been proven to be effective in about 30% of hot flush cases. I’ll take 30%! I have to get it from my GP (so can’t immediately extol its virtues), but I’ll let you know if it does the job. I am afraid I don’t have any advice to impart from the session (I was just relieved she didn’t tell me to give up drinking tea), but would recommend you seek out a ‘women’s services’ near you to take the heat off! 

We did have a good laugh about the Ladycare magnet, which brought humour (by successfully attached me to all nearby metallic objects) rather than good sleep into my life. I like to think she went home and googled it last night and will forever remember the story of the girl in the pink hat who tried to stop her sweats by popping a giant magnetic stone in her pants! 

Walking away from the hospital yesterday evening with two solutions to two problems, I felt reassured (and happy that I hadn’t been wasting anyone’s time). But I also felt proud of myself. I am getting up and fighting this every day and I am getting through. I am taking everything that is being thrown at me. I have been treated for cancer for 118 days now and – barring the day of and after surgery – I haven’t spent an entire day in bed. But, most importantly, I have realised that while it is good to be strong, it is better to acknowledge that you don’t always have to be.

Strength is believing you can do it, but recognising you don’t have to do it alone. It is wise and not weak to ask for help. Help is there, whether in the form of a pill packet or a friendly face, and help can give you the extra tools you need to keep fighting.

From now on, I will be strong, but not too strong.

 

Breast cancer lesson number 108: Here’s to the nights that quickly turn into mornings

Whoever it is that is drafting this current chapter of my life, I am starting to think I might need a few rewrites. Why would you choose the only night in 2014 so far when I was pretty much alone (Duncan was grappling with the night buses and taxis after the England game until the very early hours) to send my temperature out of control. When you’re sitting attached to a digital thermometer wondering whether or not to brave Accident and Emergency on the Saturday night of our World Cup game, you really shouldn’t be alone!

Maybe it was payback for the fact I declared yesterday a complete triumph when there was still an hour to go. Within half an hour of posting my update I started to feel hot – and not in a hot flush kind of way! I took my temperature. It was 37.7. Throughout chemo it hadn’t before reached anything higher than 37. Macmillan advice usually suggests anything over 37.5 is a concern. The hospital card in my wallet says 38 is an urgent call to acute oncology and, most likely, a trip to Accident and Emergency. Throw in a sore throat and It didn’t take long to realise the night I feared most on chemo was here at last. To make matters worse, the thermometer decides to beep wildly when it exceeds 37.5 and was like a siren going off in my head.

Temperatures and signs of illness on chemo are a big deal. Anything that indicates infection needs dealing with – and fast. I have been so lucky with this side of the treatment and I was confused as to why my great day had to go downhill quite so rapidly (trust me, it had nothing to do with the footie). It was then that it struck me. Earlier in the day I had come off my painkillers. The painkillers contained some paracetamol. Paracetamol masks temperatures and improves symptoms. Just how long had I been hiding away a high temperature and a sore throat? Just knowing this made me even more worried.

Last night was one of those nights when I was willing it to be over before it had even started. I feared going to sleep in case the temperature somehow spiralled in the night, but I was too tired to keep my eyes open. I ended up spending the night hugging the thermometer, staying awake and resisting the temptation to text my nocturnal breast feeding mum friends and, of course, my mum. 

The morning couldn’t come quick enough and, when it did, I was delighted to see that my temperature had once again made friends with the thermometer. The sore throat is there, but less dagger-like and more just sore.

Today, I have been mostly operating at the level of a zombie. I have pretended to sleep. I have participated in the most appalling game of frisbee known to man. (I think Duncan is regretting his decision to let me loose in a public space with my unpredictable throwing action!). I managed to run a bath, but failed spectacularly (as did Duncan) at blowing up my inflatable pillow. (On that note, if anyone has one and knows the trick, please let me know. Duncan and I were stumped after multiple attempts. It looks so easy). It’s a day I think it would be best put to bed sooner rather than later.

Of course, it wasn’t all bad news. Ribena broke through the taste barrier today, so being able to enjoy dinner may be just a few days away. I have just completed my last injection for this round (only to discover that there is still a numb part of my tummy that is perfect for needle-related business). And, we have a beautiful lupins in the garden that Duncan grew from seed last year. 

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Here’s hoping for an uneventful night and some useful insights from the oncology team tomorrow about the painkiller/temperature conundrum. I am about to enter the low immunity days (10 to 14), so infection watch is about to get even more important.

Sleep tight everyone. 

 

Breast cancer lesson number 106: If you can’t smile at the needle, smile at the science behind it

Before starting chemotherapy, I, like the rest of the world, was familiar with the idea of taking a drug to relieve a symptom. But taking a drug to relieve a symptom caused by taking a drug does take some getting used to. And, what about taking a drug to relieve a symptom caused by taking a drug to relieve a symptom caused by taking a drug?! Well the mind just boggles. 

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Take Docetaxel as an example. I was feeling fine (in cancer terms) before this toxic little cocktail came along. Docetaxel causes the number of white blood cells in your blood to do a nosedive. So, along come eight Granulocyte colony stimulating factor (G-CSF) injections to encourage the bone marrow to get busy producing more. With the injections comes bone pain, for which painkillers are prescribed. That’s a nice little drugs chain to get your head around. It actually got me thinking about what the longest drug chain reaction might be. If you can top this, wow, and I’m very sorry.  

You could view this ever-increasing list of pills and potions the doctors are prepared to prescribe as confirmation that chemo is a pretty brutal regime. For me, however, it serves more as a reminder of just how amazing medicine really is 

While I can’t say I look forward to injecting myself with a drug that ages me physically in a matter of hours, I have to admire the science. The fridge and I have become acquainted with many types of needle-related devices in recent months and this little one (even if it doesn’t produce babies) is pretty nifty. You pull off the cap, depress the plunger and when you take it out of your tummy, the spring at the front opens up to enclose the needle. Clever and safety conscious. I like its style!

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So, if you’re having trouble facing those nightly injections, now is the time to think less about the needle and more about the amazing people tucked away in their labs researching and inventing new drugs – and new ways of administering them – so that we might sleep a little better at night. It may not be fun, but it would be even less fun if they didn’t exist.

Three cheers for injections and the injection makers! Five down, 19 to go!

Breast cancer lesson number 105: What the chemo consent forms won’t tell you!

I have made a discovery. There are certain chemo side effects that don’t appear on factsheets and hospital consent forms. That’s not because they don’t exist, but because patients and consultants alike would have to endure a certain amount of embarrassment to reveal them.

They may not be groundbreaking and they’re certainly not on a scale of peripheral neuropathy or fatigue. But, I believe any side effect that brings about a physical change (embarrassing or otherwise) should be noted down so that a) we don’t all think we’re bonkers when it happens and b) we go into the entire process knowing there might be a few laughs along the way. So that’s what I’m about to do.

Before I begin, I think I should start with an apology, particularly to my loyal male readers. The following post may take you to places you’d really rather you didn’t know existed. There is about to be what one might call an element of oversharing. Trust me, it is not indulgent. It is medical. While I think it wrong to apologise for the route I am about to take, I can confirm that I will be containing it to a single blog post, so you don’t have to concern yourself with a repeat performance. Who knows? You might just find it funny.

I think it is fair to say that I’m not surprised certain side effects do not get a public airing. It takes me back to my hip surgery days. I remember waking up from the operation to find that my nether regions had been dyed a rather peculiar shade of purple. It was also a rather permanent type of dye, which meant I had to live with my alien-like hue for quite a while before the colour grew out. I had been prepared for the pain, the discomfort and the lack of weight bearing. I had not been prepared to laugh every time I took a shower.

Thoroughly amused by this turn of events, I raised the point at a focus group about patient care as a way of demonstrating that even the smallest of details are worth mentioning to help people deal with recovery. The patients all nodded in agreement as if reminding themselves of the discovery. The nurses laughed. And the surgeon? Well, he explained that they must have been out of the orange dye that week!

I am afraid to say it is this same region that has triggered my search for the secret chemo side effects everyone has, but no one dares to declare. Having never had a Brazilian wax, I was rather intrigued at the possibility of losing my hair on areas other than my head. But, I have to confess, it brought with it a rather unusual problem. Without being too crude, it seems the hair does help in a directional sense and its absence means you have to be vigilant (particularly if you have a tendency to crouch in public loos). Initially I thought it was just me, but having mentioned it to a few select ears (and done some rather entertaining Googling), it seems I am on to something! Now why didn’t the oncologist mention that when he was telling me about coping with hair loss! It may not warrant a whole fact booklet, but I think it deserves a paragraph. And, as an aside for women who trim regularly, I would urge you all to stop.

On the subject of hair loss, I think it strange that the advice tends to focus on the hair, eyelashes and the eyebrows. What about nose hair?! While losing the hair on your head is not to be recommended (unless you really do like the idea of trying out every short style you never dare attempt), it is manageable. Losing the hair in your nose, however, makes it look like you are dining on a diet of curries and hot foods.

And then there’s the growing back bit! While I am yet to enjoy this rather hairy experience, I am led to believe that the hair doesn’t always remember where it’s supposed to grow. I have heard of people shaving their big toes and not their armpits!

Why is it that everyone goes on about Epirubicin and the dreaded ‘pink pee’, but nobody talks or writes about Docetaxel and the ‘sweet pee’? I’d take coloured pee any day over something that smells like an overstocked sweetie store. For those of you about to embark on this taxing drug, you have been warned!

Even products designed to alleviate some of the more well-reported side effects, such as hot flushes, don’t offer up the full picture. I have been wearing the Ladycare magnet in my knickers for a week or so now in an attempt to get a good night of sleep. I am not sure it has reduced my sweats, but it has managed to attach me to everything from my dessert spoon to my door keys. Thankfully a kind friend warned me of this, so I wasn’t too alarmed when it happened for the first time. I don’t really like the idea of being joined at the hip with all metal items in the neighbourhood.

I should also mention that there are also positive side effects that I would have loved to have been told about upfront to balance things a bit. The consent form should say: ‘by signing up to this course of chemotherapy drugs please be advised that your skin will become silky smooth and soft.’

I should probably stop here before I lose all my followers. But, let me leave you with a few final thoughts. To all medical professionals out there, fear not the embarrassing, blush-inducing side effects! If we’re going to sign off a seven-page consent form, it is best to make it thorough! And to all cancer patients, please open up about those secret side effects (post here or make your oncologist blush).

Because, chances are, the person sitting next to you in the waiting room is experiencing them too.