Breast cancer lesson number 110: See the everyday in a new way

On the train yesterday, when I realised the girl opposite was drinking something that smelled just like the sugary sweet pee created by injecting Docetaxel into your veins, it suddenly hit me. Life will forever be filled with both obvious and surprising triggers waiting to transport me back to cancer in a heartbeat.

Joining this turquoise-coloured soft drink (goodness knows what it was but I hope I never smell it again) is the smell of mouldy oranges. For me, I will now always associate that not-so-fragrant odour with the smell of saline. For anyone who has their PICC line flushed weekly, my thoughts are with you when that little solution goes in. I can taste it and I hope, once the line comes out in a month’s time, to never taste it again. I certainly won’t be going anywhere near a mouldy orange, that’s for sure.

Of course, it’s not just smells. Then we have sounds. I can no longer look at my fridge in the same way. Leave the door open just a second too long and it beeps like a chemo pump when the drug bag is empty. For anyone who has visited a chemo unit, the sound of pumps beeping (always at slightly different times and never in unison) is something that stays with you long after the PICC line valve has been closed. And don’t get me started about my cancer anthem. I love Pharrell William’s Happy, but why do I have to hear it (other than through my iPod) on important cancer days (diagnosis day being the first). Don’t get me wrong, as anthems go, it’s a goodie. I am certainly grateful it’s nothing morbid, like Hurt or Sister Morphine. 

And what about those sights? The Shard, The Houses of Parliament, Southbank, the Thames Clipper (a commuter boat on the river) and the lamppost opposite our house. Once just London landmarks (ok I appreciate the lamppost won’t be making it onto a city tour any time soon), they are now markers in my cancer journey. Even Big Ben is no longer just a bell (yes, folks not a clock or a clock tower, a bell). It’s the bell that kept me company on those long nights after DIEP surgery.

Cancer has even given activities, such as painting my nails, a purpose. How will I ever paint them again without reminding myself of the darkened and brittle nails I was once trying to cover up.

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Maybe it’s no bad thing. Maybe, instead of fearing the smells or launching at the fridge when I am unloading the grocery shopping, I should embrace them, safe in the knowledge that the everyday is still the everyday and I am lucky enough to be here to enjoy it. Maybe I should hug the freezer rather than shutting it, reminding me every day to keep embracing the little details of my life, knowing how quickly and how silently they can be taken away. 

A sound many trigger a memory of cancer, but a memory is all it will be.

 

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 107: Cherish those who hold you up!

You could be forgiven for thinking that someone with chemically-induced pains, thinning eyebrows and no tastebuds, has every reason to not feel happy – let alone lucky. But right now, sitting here on the sofa I feel like one of the luckiest people alive. That’s got nothing to do with the fact I am far from a bar showing the hotly-anticipated England World Cup game tonight and everything to do with the fact I have spent the day being reminded of just how beautiful this little world of ours really can be.

Ok, so it wasn’t your average supermarket shopping and washing Saturday. I was actually at a CoppaFeel training day for The Boobettes. As those of you who’ve read lesson 104 (click here for a recap) will know, I have started volunteering for charity CoppaFeel to help amazing founder Kris Hallenga (who is living with advanced breast cancer herself) and her small-but-perfectly-formed team in their mission to wipe out the late detection of breast cancer. Today was my official induction and I have to say, I haven’t stopped smiling.

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I thought I’d learn a lot. And I did, which was fantastic. But, what I didn’t anticipate was just how inspired and moved I would be by everyone I met. From mothers and teachers to singers, knitters and writers, this was a meeting of driven, passionate and beautiful people all united by one common cause, and I felt so humbled to be in their company. I came away thinking I would never have met these people if I had never been diagnosed (I am just not cool enough it has to be said). But, I am so so glad I did. Cancer hadn’t made these people beautiful. They were already that way.

As a quick aside, we were asked to name our boobs at the beginning as a way of breaking the ice. Mine are called cupcake (left) and muffin (right). The reason? Well, I love cake, I love baking, I feel my new right boobie is made up of all the amazing cake and chocolate gifts donated to me before surgery and the right continues to outgrow the left due to it remembering its origin (hence the difference in baked products). Just don’t ask me for the recipe! 

My great day didn’t end there. I drove home via a close friend’s birthday and seeing her face as I arrived at the table made me realise just how important it is to make the effort for the people you love. I couldn’t drink, I couldn’t enjoy the pizza or the homemade cakes prepared by her kind friends, but I could enjoy the company (most of which was people I’d never met who welcomed me immediately and didn’t say a word about my funny hat or the tube poking out of my arm) the chat (theatre, cake, more theatre, schools today) and a hug with my wonderful friend.

But, my great day didn’t end there. If we skip over the injection (which I deliberately took before my food so as to treat myself immediately afterwards), I got home to find a beautiful surprise on my doormat. Back at Breast Cancer Care’s Younger Women Together event in May (click here for lesson 87) we were asked to write a postcard to ourselves that would be posted to us after the event. While I found the whole event inspiring, I didn’t write about my experience but about the words of a beautiful young mother I met, who told me a great story about reading to her child throughout treatment. She often read the story We’re all going on a bear hunt and told me the words took on a whole new meaning for her. She said: ‘Cancer is like a bear hunt. You can’t go round it, you can’t go over it, you’ve got to go through it.’ I wrote this down and added: ‘So keep going’. I knew there would be tough times ahead when I wrote it and I thought it would make me smile. It actually did more than that. It reminded me of yet another wonderful and kind person introduced into my life because of this life-changing disease.

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But, my great day didn’t even end there. While making myself dinner I noticed a tupperware box filled with ginger biscotti that a friend had made and sent via Duncan. I am now munching my way through the tub and am delighted to report that I can actually taste them – and they taste wonderful. This box didn’t make me smile because it was filled with tasty goodies (although that certainly helped). This box made me smile because it reminded me that not only have I met beautiful strangers along the way, but people I already knew to be beautiful have become even more so (even though I thought that wasn’t possible). I never thought I would cry over a well-baked biscuit. But I just did!

But, my great day didn’t even end there. I check my phone and find on it a brilliant message from my sister-in-law about a book she had just picked up for her son. It’s called The Okay Book and it’s packed with great messages such as: ‘it’s ok to try new things’ and, amazingly, ‘it’s ok to have no hair’. I couldn’t agree more and I continue to smile at the thoughtfulness of this lovely lady.

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As a self-confessed perfectionist often on a mission to help others, I think I have spent too much time trying to be the best I can be and not enough appreciating just how amazing those around me really are. I feel truly humbled by old, new and hopefully soon-to-be friends (you know who you are)!

So, to all of those people who go out of their way to be kind, thoughtful, generous and basically amazing on a daily basis, I want to say thank you for being you.

I’ve had a wonderful day just by being reminded of how many of you there are!

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.

Breast cancer lesson number 104: Small steps can make a big difference

If you’d asked me at about 4am this morning, what I hoped would be my achievement of the day, I would have said getting out of bed. With muscle aches, bone pain, a sore throat, tingling in my toes and my feet and a continued sense of emptiness, I woke up today – or rather decided it was morning – thinking it might be just one of those days when it would be ok to lose myself in a good book and a packet of painkillers and try again tomorrow. Sat in the evening sunshine with a smile on my face, however, I couldn’t have been more wrong.

There are two reasons why I made it out of my pyjamas and decided to fight the fatigue. Firstly, I had a dentist appointment. Usually, just the thought of those blue gloves and shining implements would be enough to tempt me back under the covers. But, having looked after me so well before chemotherapy, I felt I really should make the effort (especially given the surgery is about two minutes from my front door). It was a rather nice experience in a way, although I confess this had less to do with the shiny tools and more to do with the fact the chair worked wonders for my pains, almost hugging my body as it tilted me closer to the dentist. You know it’s bad when you look to the dentist for a bit of comfort!

The second reason is a little closer to my heart. Today, I had a rather important message to deliver and I’d promised myself I would do my utmost to get out of my fluffy slippers and deliver it – pain or no pain. And, that’s exactly what I did.

So, at 1pm today, I wasn’t surrounded by cushions, but a group of business women on their lunch hour all waiting to hear what I had to say about boob checking and why ‘copping a feel’ might just save their lives.

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If you’ve been following my journey you’ll know that I took the decision early on not to count the days until the end of active treatment, but to make every day count (click here to read lesson 68 where I explain a bit more). Giving back for me isn’t just about raising money, dusting off my trainers and hitting the city streets (although that is still crucial and you can still sponsor me here). It’s about using every bit of my experience to make a difference. Today that meant putting on a Boobette jacket for the amazing charity CoppaFeel and striking up a healthy conversation about boobs. Today that meant encouraging people to make boob checking a part of their daily lives. Today that meant burying my pain in a pill packet and reinforcing the work of dedicated founder Kris Hallenga, who has a treatable, but incurable form of the disease.

As I stood in front of those women, I knew that even if they didn’t remember the slides, the number to text or the latest breast cancer statistics, they might just remember the woman who stood before them with a hot flush, a funny hat and a desire to make a difference. I thought my message might be that little bit more powerful if I was speaking with toxic drugs in my system. I think I was right.

So, ask me what my achievement of the day is now and I’ll probably overlook the getting out of bed part (although I’ll admit, it was key). Back in my fluffy slippers now, I can rest easy knowing I did my bit to stamp out the late detection of breast cancer and give young women the confidence to go to the doctor. 

I’d like to say that had earned me a lie-in, but I have pilates first thing! Here’s hoping the pain starts to ease soon! 

NB: By the way, if you’d like to find out more about CoppaFeel and even get a visit from a Boobette at your workplace or school, please do get in touch. I am on Boobette training at the weekend, so will be a fully-fledged volunteer come Saturday!

Breast cancer lesson number 103: Tax by name, taxing by nature

Chemo drug Docetaxel (which sounds more like a dinosaur than a toxic infusion) certainly lives up to its more commonly used name ‘Tax’. The side effects appear deliberately complicated, just the mention of it makes most people go a bit pale and the administration of it usually brings about pain. Whether you’re paying it, or receiving it intravenously, tax is no fun.

It started so well – although I think this had more to do with the extra helpings of steroids, which did give me the feeling I could take on the world (or at least the kitchen floor)! There was no nausea (thank you Emend). And, for the first 48 hours I had little more than mini bouts of fatigue, disturbed sleep, hot flushes and a general sense of unease. I had started to think we were going to get on.

Then, at around 4pm yesterday afternoon, the picture changed. All of a sudden, I went from Duracell bunny to flat battery. I lost my taste in the space of about half an hour. I ate early, was in my pyjamas by 6pm and drifted through the last Harry Potter film before making it to bed at a less-than-respectable 8.30pm. I had my first bone pain inducing injection. I wrestled with the bedding, got hot, got cold, got stiff, got up and eventually rolled out of bed when I couldn’t think of anything else to do to get comfy.

Six hours on and I am still trying to work out exactly how I feel. Strangely, it’s like my limbs feel heavy, but my body feels empty. I’m finding it hard to focus and everything from my back and my boobs to my sternum hurts a little bit – like someone is slowly tightening a band around me. I’d like to say I was having a nice time sat here in the garden with the light breeze on my neck. But, it’s not particularly fun.

And, the worst part is, I’m not sure what’s round the corner. I know there are another seven injections to come in this round and that injections mean pain. I know the steroids are over so there is nothing to help me with the housework or the cooking (when my lovely mum heads home). And, I now think I know what chronic fatigue is really all about – and I really wish I didn’t.

I’ve been warned that this drug is tough. All I’m hoping is that I am just that little bit tougher!

I think it’s going to be a long week!

Breast cancer lesson number 102: It’s better to give than receive, particularly on chemo day!

Having been awake pretty much all night on a steroid-induced high (thanks to the dosage being doubled), I wasn’t expecting today to be as productive or as enjoyable as it has been. Especially with the words: ‘Docetaxel cycle one’ ringing in my ears.

The good thing about steroids, however, is they don’t stop working when you wake up. With four more at breakfast, I was answering emails, sweeping the floor, clearing papers and popping my next batch of chemo cookies in the oven (this time using a recipe all the way from Germany) all before 9am. I could have run (well, maybe jog a bit) all the way to the hospital, but instead decided it might be wiser to conserve my energy and just take a leisurely walk to the train in the sunshine through Greenwich Park.

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For me, today was as much about giving as it was receiving, and that fact makes me smile. I handed over a tin of sugary ginger cookie treats to the cancer day unit and wore my Breast Cancer Care T-shirt to raise awareness of this superb charity (click here to find out what they’re up to or visit my Justgiving page to help me raise funds to support their great work). In return, I got a slow-release infusion of T (the drug is administered over a longer period, with no red syringes in sight), some anti-sickness meds (including miracle worker Emend), eight pre-filled syringes to start self-injecting on Sunday (to boost my immune system) and what I can only describe as the world’s largest sharps box! It needed its own bag to carry it home.

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How do I feel now? A bit tired, a bit anxious about how the next week will pan out, but otherwise fine. The calm before the storm is a strange place, and I just hope the storm doesn’t involve nausea, chronic fatigue, bone pain, muscle pain, mouth problems and peripheral neuropathy. I have survived the first part by not having an immediate allergic reaction to the new drug. And, I have done what I can to lessen the side effects. I have had some exercise, taken my pills, sucked on a rather strange mango and passionfruit (or at least that’s what it said it was on the packet) ice lolly while the drugs went in (it’s a bit like the cold cap for the mouth, but more bearable if you actually suck on something flavoursome) and am now relaxing in the garden with a scarf over my head and shoulders so I don’t get exposed to the beautiful sunshine.

The good news? The cookies went down well (so much so I couldn’t locate the tin), the cancer day unit makes me feel like I am returning to see old friends and, at last, I got the free lunch I have heard so much about. There wasn’t a lump of mash in sight sadly, but they didn’t scrimp on the ham. I even returned home to a wonderful parcel of hats from a new friend I met at Breast Cancer Care’s Younger Women Together event back in May.

I am strong, so let’s just hope I am stronger than the drugs currently working their way around my body.

Only time will tell.

Wish me luck!  

Breast cancer lesson number 101: Nothing takes the past away like the future

Change is afoot in the Sloan/Scully household. Now by this, you might think I’m referring to the fact I’m about to start chemo drug Docetaxel. But, there is actually something far more newsworthy happening that I feel I really must mention. The three-piece suite that has been comforting my bottom for the last 21 years – and that I vowed would never make it through our front door in Greenwich – is now outside our house waiting to be taken away.

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Now we are actually parting with my parents’ old grey sofa (complete with embroidered leaves) I do feel a twinge of sadness. We’ve had some good times (curries, TV dinners and movie nights) and some bad times (it’s not good for sleeping on and it has swallowed up a few too many coins). But, overall, it’s been a pretty good sofa. Until Saturday, we are now sofa-less and all I hope is that the new one fits through the door. I’m not sure I fancy recovering from chemo cycle four on the floor!

That brings me neatly to the real subject of today’s blog. Tomorrow marks the official halfway point (not the unofficial one I claimed in lesson 88) in my chemo treatment. Out go red syringes and pink pee and back comes the fear of the unknown I thought I’d left behind in lesson number 49. How am I going to feel by Friday evening? Chances are, it won’t be as well as I feel right now (and by well I mean not in pain). 

Chemo cycle four does sound a lot closer to the end than chemo cycle one, but as the first cycle of my new drug, it feels as though I am right back at the beginning. There are, however, two key differences. Firstly, I’m not as healthy as I was when I started the first course. Will that have an impact? I’ll let you know. And secondly, while I don’t know what side effects will pop up to taunt me, I do know that it’s often the ones you least fear that are the ones that get you the most. I feared the vomiting on FEC. I should have feared the mouth ulcers and the loss of taste! 

I have heard that swapping FEC for Tax (as it is often known) is like swapping a stomach bug for a flu bug. It is likely I won’t vomit, but the muscle and bone pain don’t sound particularly pleasant. Apparently, the muscle pain is caused by the chemo drug itself and comes on in the first week. The bone pain is added in by the injections I have to administer from day 3 to help boost the number of white blood cells in my body (oh yes, this one wreaks even more havoc with the immune system). At least when I was self-injecting for fertility treatment I got eggs at the end of it. Sounds like all I get is pain this time (not sure I will be able to feel my boosted immune system). The list of side effects is long, so let’s just hope the drug is kind. I even get more steroids, which will either help me with the spring cleaning or the piling on of pounds!

The day before my first chemo, I wrote down ten chemo tips I was keen to test. Here’s a quick glimpse into how I’ve got on so far…

1)  Dark nail polish: I’ve painted it on and so far my nails have not fallen off, so I will claim a victory. My big toe is a little on the dark side (under the polish), so let’s hope they last the course. I also have interesting nails for the first time, so even without the
benefits, dark colours work for me.

2)  Sleep caps: They certainly catch stray strands of hair, but they do make it a little tricky to manage those hot flushes. I love wearing them when I am really cold though, even if I look a bit like a gnome!

3)  Senna (or your favourite poo-charming substance): Who needs Senna when there’s All Bran in the house! Ok, so I used it once when I couldn’t remember if I had ‘been’ and then regretted it. It is a handy item to have on standby, but you can’t beat a few mouthfuls of bran with your brekkie!

4)  Flavoured water and ice lollies: It’s nearly summer, so I now have two reasons to eat ice lollies. While I wouldn’t recommend frozen grapes (tried them on chemo 3 to keep my mouth in check and they tasted a bit too weird), I think there is a lot to be said for sucking on something cold while the chemo drugs are going in. It’s a lovely sugary distraction!

5)  Inflatable bath pillow: I think I need to stay in the bath a bit longer. I am still a bit of a speed washer.

6)  Toweling robe: Love it! Not sure I love it because of chemo, but I love it all the same. Who couldn’t love a soft, fluffy robe?!

7)  Queasy drops: Tick! They taste nice, they distract me from thinking about nausea and I don’t get bored eating them.

8)  Pineapple chunks: I would go as far as to say that they taste even better on chemo. Same goes for blueberries and strawberries – and extra strong mints of course!

9)  Ginger tea and ginger nuts: I am finding it hard to tolerate the smell of any herbal teas (so much so I wonder whether I will ever be able to enjoy one again). Ginger nuts are great for baking (as we all know from lesson number 79). But, whether or not they help with nausea, I just haven’t a clue. It would help if I actually ate one when I felt nauseous rather than just when I felt hungry. 

10)  Brow Zings: I’ll tell you when my eyebrows fall out!

The cancer kit list of tips and suggestions is coming, but there is one tip I want to add in for now. Plan in something that makes chemo day a day to look forward to rather than fear. For me, that means baking for the cancer unit so I feel excited about giving something back. I’m also so busy thinking about what ginger chemo cookie (or gingerbread) to bake next, I momentarily forget about the drugs making a beeline for my veins. It certainly works for me, and I hope it will work for you too.

This week it’s out with the old and in with the new. Let’s hope both the drugs and the new sofa are a welcome addition to our little London life.