Tag: treatment for breast cancer

Breast cancer lesson 168: Why I am about to run for my life – and for charity

On By Jackie ScullyIn Exercise and breast cancer, Moving forward, Reflections on cancer9 Comments

One thing you may not know if you haven’t had the pleasure of being prescribed an oestrogen blocking anti-cancer drug is that Tamoxifen, my new friend for the next decade, has a nickname. It’s a bit too ‘rude’ for me to mention it here (you’ll just have to trust me that it isn’t nice), but let’s just say, it’s a nickname that only now I fully understand.

While I will be forever grateful that there exists a drug that can reduce the chance of my cancer coming back (and I really am grateful), I do just wish it could do its stuff without raising my anxiety levels (trust me, this pill can make the washing up seem like an uphill struggle), stealing my sleep and generally ageing me by about forty years. When I heard about people’s experiences of the drug I honestly thought that, after chemo, it couldn’t be that hard. But, faced with taking a potentially mood altering drug for ten years, part of me would rather endure another short-term course of the toxic stuff than have to ‘check in’ with my body every five minutes to make sure it’s in one piece.

Don’t get me wrong. I am still really happy and thankful I have my life. And, if this is what I have to do to prolong it, I will do it. But, I guess Tamoxifen (the effects of which I think are starting to kick in now my body is leaving the effects of chemo and Zoladex behind) is my daily reminder that, far from finishing the fight for my life, I am still very much at the beginning.

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Which brings me to the title of this blog post. When I knew things were about to get tough before chemo, I hit the road with my, then, tatty trainers for the first time in a decade. I hit the road, not because I was a runner, but because I wanted to stay sane and counteract the weight gain. I did it for me (as well as raising money for charity) and I think it is one of the biggest reasons why I started and finished treatment with a smile on my face. Running (or more accurately, jog/walking) saved me this year. And, you know what? I think I need it to save me again.

I confess, I hate the thought of running. I even hate the getting dressed for running part. But, the feeling I get when I arrive back home after a jog through Greenwich Park is a feeling I wouldn’t give up for the world. It was that feeling that got me round the streets of London when I had chemo drugs running through my veins. It was that feeling that made me choose a run over a party at the end of active treatment. And, it is that feeling that I hope will help me over the finish line of my next, and biggest, running challenge to date. On March 1, I will be back on home soil running the Bath Half Marathon.

Whether my legs will go the distance is still a subject hotly contested at my family home in Wiltshire. But, while I can’t predict the future and second guess whether the hip problems that plagued my twenties will return, I know that I will give it my best shot. This time, it’s not about weight management (although I do get to eat more cake). This time it’s all about the mind and showing my body that, however hard it tries to bring me down with its cocktail of drugs, it will never take my spirit and my determination to succeed. However I do it (and it won’t be graceful), I will be crossing the line in March for every person who needs Tamoxifen to keep them alive. It seems a cruel joke that after nine months of active treatment, just when we all want a break, we should be faced with yet another drug-induced challenge. This is one challenge, however, I will overcome.

Of course, I am not just running for me. I am running for amazing charity CoppaFeel. Those of you who have been following the blog will know just how important CoppaFeel is to me. You just need to spend a few moments with twin sisters Kris and Maren (who founded the charity) to know just how special they are. They work so hard, with very few resources, in their fight to wipe out the late detection of breast cancer. Kris is dying. Maren has to watch her sister fight the disease every day. And yet, both are dedicated to making sure other people they don’t even know – or will ever meet – have the chance to enjoy a long and happy future. It seems to me the ultimate selfless act to give your life to helping others when you don’t know how much of it you have left. If that’s not worth a few quid, then I don’t know what is.

As with the last two races, I won’t be heading to the starting line alone. Back in July my wonderful friend Fran stuck by me (when I knew she could run faster) as I completed first the British 10k. She turned out again in September and has been persuaded to join me on this, no doubt, cold wintery day. She believed in me when I thought I had nothing left and, for that, I will be forever grateful. Duncan will be heading out too (we may even get him in a giant boob this time), although we probably won’t see him after the warm up. And, it means the world to me that my amazing school friend Alex will be returning to the course (after tackling it last year of CoppaFeel) to help me round. With that kind of back-up, I just have to hope and pray my legs don’t let the side down.

Running as a non-runner has been an emotional and amazing journey. This time, with winter training, double the distance to run and the same dodgy hips, we need all the support we can get. If you can spare just a few pounds to make that training (followed by mince pie eating) worthwhile, then please head to our Virgin fundraising page. Then all I ask is that you return to this page to post (as a comment) the song you think will motivate me, make me smile and remind me of you. I want to create a playlist of requests that remind me of the people who believe we can get there. I know that will give me the motivation I need to step out over the coming dark months even when the lure of Christmas lights and cooked ham is more appealing.

Together, we can help Kris and Maren make secondary cancer a thing of the past – and show Tamoxifen who’s really the boss of this body!

Thank you.

Together, we can help Kris and Maren make secondary cancer a thing of the past – and show Tamoxifen who’s really the boss of this body!

Thank you.

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

On By Jackie ScullyIn Chemotherapy, Happiness2 Comments

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

On By Jackie ScullyIn Baking, Chemotherapy, Happiness4 Comments

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

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.