Tag: blogging about cancer

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

On By Jackie ScullyIn Chemotherapy, HappinessLeave a comment

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

On By Jackie ScullyIn Chemotherapy, Happiness7 Comments

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.

On By Jackie ScullyIn Chemotherapy, Happiness6 Comments

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 111: Patients make good carers

On By Jackie ScullyIn Chemotherapy, HappinessLeave a comment

There has been a bit of a patient/carer role reversal in our household of late. Duncan has sadly hurt his knee (the bad knee from a few years ago, so we have everything crossed that it recovers well) and is finding everyday activities like walking down the stairs quite difficult.

Having been there many years ago with my hip, I understand just how frustrating it is to go from an active person to someone who struggles to answer the door, so my heart goes out to him. But, secretly (or not so secretly as I am posting it here), I really rather like having someone to look after. Of course, I would obviously rather no one told Duncan this fact, otherwise I might find myself climbing the stairs for chargers and T-shirts and shoes just that little bit more often!

While I like to think I am a patient patient, I think the shoes of a carer are a much better fit. So, I am writing this post to say to all my amazing and exceptionally wonderful family and friends that if I ever hear the opening line: ‘It’s nothing like what you’re going through, but…’ again, I think I might have to have words (gentle and soothing ones of course!).

Yes, cancer is brutal and the treatment for it even worse. Yes, I wish I could find a cure so no one would have to hear the word again. Yes, it (or the fear of it returning) will stay with me forever. And, yes, I can’t wait for treatment to be over so I can rebuild the life I have temporarily paused and watch my hair grow back (grey or otherwise). 

But, that doesn’t mean that I don’t have time or space to hear about the gas man who never came, the house move hell that is dictating your life, the job interview you wish you’d never started, the horrid work assignment, the dentist appointment you are dreading or the illness that you – or someone close to you – is facing (sore throat, man flu, the works). They didn’t remove my listening ear when they took my lymph nodes. It is still in full working order and would actually quite like to hear ALL your news – not just the Jackie-is-fighting-cancer edit!

As I see it, cancer is not the trump card. Cancer is just another card (albeit a very nasty scary one) in the pack of life sent to make our days just that little bit more challenging. In many ways, it is easier to deal with, because I have a massive team of experts, friends (old and new), fellow patients and family to draw on. I have an emergency hotline and a whole house full of pills. I sometimes wish I had such support when I have to face the broadband helpline or the water board!

I may have no hair, but I have a big heart and lots of love to give, so let me be part of your team.

As cancer will tell you, I can be a pretty tough cookie – and I also like to bake them (a bit softer though)!

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

On By Jackie ScullyIn Chemotherapy2 Comments

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

On By Jackie ScullyIn Chemotherapy, HappinessLeave a comment

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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

On By Jackie ScullyIn Chemotherapy, Happiness4 Comments

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!

On By Jackie ScullyIn Charity, Chemotherapy, Happiness2 Comments

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

On By Jackie ScullyIn Chemotherapy, Happiness1 Comment

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!

On By Jackie ScullyIn Chemotherapy4 Comments

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.