Tag: hospital

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 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 103: Tax by name, taxing by nature

On By Jackie ScullyIn Chemotherapy3 Comments

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!

On By Jackie ScullyIn Baking, Chemotherapy, HappinessLeave a comment

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

On By Jackie ScullyIn Brighter Life List, Chemotherapy, Happiness2 Comments

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.

Breast cancer lesson number 100: Don’t expect your top to stay on for long!

On By Jackie ScullyIn Chemotherapy3 Comments

I should have known. It’s a rare trip to the hospital that doesn’t involve me stripping down to my waist. But, when you’ve dressed for a pre-chemo blood test and a chat with the oncology nurse, you just don’t expect to end up in a gown.

In truth, this is a strip I could have prevented. I did, however, think it might be time to mention the fact that when I try to sleep on my left side, my heart starts to race. I knew it wasn’t normal, but with a PICC line in my arm, I just thought it was a side effect (that could be prevented by me sleeping on my back). As it turns out, even with a PICC line, it still isn’t normal.

So, instead of my usual trip from the oncology department to the pharmacy to pick up the next round of pills, I found myself next to a man with a sling waiting for a chest x-ray. Quick change and x-ray blast done, I then had to make my way to another new (to me) area of the hospital. This time haematology! I am certainly clocking up those departments.

As it turns out, I’m very glad I did get the chance to wear yet another gown. The PICC line was 3cm too far in to my body, which means that every time I turned onto my left side in bed, it was getting a little too friendly with my heart. Thankfully, it’s not hard to fix and, in a quick 15-minute appointment, the nurse pulled a bit of the tubing from the hole in my arm and kindly redressed the lot. Given I had only had the area redressed two hours earlier, my arm is still throbbing in protest! The only slight problem is that the tubing quite likes finding its way back into my arm. For now, it is taped in place, but I have to make sure it doesn’t slip back in.

Of course, it wasn’t all gowns and sterile dressings. I met one of the beautiful ladies from the Haven exercise video (see lesson 94) in the oncology waiting room and had a lovely (albeit quick) catch up. The oncology nurse was brilliant too and is going to see if she can dig out some menopause tips for me given my clinic appointment is booked for July. And, I am loaded up with painkillers for chemo round 4. Only downside? I didn’t like what I saw on the weighing scales (we always have to be weighed to check that the chemo dosage is appropriate). More exercise for me and less quiche making (we have been eating leftovers from Sunday’s lunch – pretty much half of the table in lesson 99 – for the last three days).

So, with the PICC line sorted and the painkillers in the kitchen, I am ready for chemo 4 on Friday. Let’s hope my blood agrees…

Breast cancer lesson number 98: If you can’t stand the heat, find someone to help you cool down

On By Jackie ScullyIn ChemotherapyLeave a comment

With a trip to the menopause clinic on today’s agenda (in yet another part of the hospital – this time Women’s Services) I was planning to fill this post with practical tips to help those going through both an enforced chemically-induced ‘change of life’ and the real thing. Trouble is, you don’t learn much when you don’t get further than the waiting room!

I always like to be punctual, but while turning up two minutes before an appointment is fine, two months is a little on the eager side! Whether it was a glitch in the admin system or an attack of chemobrain (which I am still trying to convince myself won’t affect me), I will never really know. But, let’s just say, the date and time in my diary (agreed over the phone last week) didn’t match the system or, in fact, the letter they’d sent me following the call (that I had failed to scrutinise).

I had a good laugh with the receptionist (who thankfully saw the funny side too) and it wasn’t a wasted trip (I got a PICC line flush and a beautiful back and foot rub thrown in from a kind Dimbleby Cancer Care lady), but the problem I now have is, the appointment is so late in my chemo regime (more than a week after my last poisoning) it almost isn’t worth having. Plus I am now facing two more months of hot flush fuelled nights. Trust me, two nights is enough! I could, of course, go to discuss the fact I may get more sweats on Tamoxifen, but I’m not sure the NHS would appreciate a hypothetical discussion about side effects I might get.

Sadly, the cancer card does not work in all parts of the hospital and I left with little more than a red face – probably due to the hot flush that had appeared as if on cue in protest. So I did what any woman in need of a natural cure would do and I rejoined a beautiful friend and her daughter (who I’d enjoyed a 30-minute pizza trip with an hour earlier) for a consolatory ice cream. It certainly didn’t magic up a new more useful appointment, but it was a brilliant temporary fix.

Hopefully I will be able to ask the oncology nurse for some advice next week (can you really be examined for hot flushes anyway?). In the meantime, I have turned not to Dr Google, but to the Young Breast Cancer Network Facebook group. Within a matter of minutes I was inundated with tips. My favourite has to be a lady care magnet, which you attach to the front of your knickers! Sounds strange and a little heavy, but I am absolutely going to try it.

I’ll let you know how I get on. Just don’t ask me about it in polite company! And, if all else fails, at least there is ice cream!

Breast cancer lesson number 97: Reclaim your tastebuds!

On By Jackie ScullyIn ChemotherapyLeave a comment

The only things I am currently taking in extra strong helpings right now are my mints. That’s right. Trebor Extra Strong Mints are my not-so-secret weapon in the fight against chemo. They hit the spot in a way no other foodstuff knows how. And, for that, my tastebuds will be forever thankful.

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The nice thing about developing a rather unhealthy obsession with these giant pill-like (yes the resemblance isn’t lost on me) sweeties, is that the extra strong mint and I go back a long way – to the school run in fact. The last time I remember popping a peppermint treat in my mouth was in the car with my mum on the way to lessons. No journey would be complete without a mint. Every time I crunch one now (I am too impatient to suck it for too long) I think of my mum and I smile at the thought that this small ritual from my childhood has made such a mark on my life.

I think it is only right I clarify that my diet does not now consist of mints, mints and more mints and I am not advocating you all rush out to the newsagents. But, it’s just so refreshing to find something that doesn’t taste of cardboard when I pop it in my mouth. Chemo has its own special way of turning the most delicious smelling (and looking) plate of food into something akin to gruel. And, gruel is something that belongs in a Dickens novel, not on my plate.

Of course, I can’t give mints all the credit. Blueberries and strawberries are putting in a good performance and pineapple chunks (the fruit pretty much everyone has on the list) are pretty special. And, let’s not forget eggs in purgatory from lesson 80 (to which I have added onion, sausage and all types of cheese in an attempt to vary it slightly). I even find that, the cheaper the wine, the better the taste (especially white wine). But, when I wake up and can’t face the sight (let alone the taste) of a glass of water, I know to what item my thoughts drift first.

I will be posting a more comprehensive guide to chemo when I think the side effects have all worn off after my last poisoning. At the moment, life is so unpredictable I fear a tip may be out of date before I press publish. For now, my advice to all those facing the toxic cocktail that is chemo is experiment. Find a way to get reclaim your tastebuds. You might not find them in a bunch of bananas or a slice of peanut butter on toast. But, they’re there and they want to tempt you once more.

Breast cancer lesson number 93: How to face cancer with confidence

On By Jackie ScullyIn Chemotherapy, Happiness2 Comments

I think it would be fair to say that my make-up routine is less of a routine and more of a lifelong period of experimentation. I have the creams, the mascara, the eyebrow pencils and the obligatory make-up bag, but it seems that no matter how much stuff I apply to my face, I never look like I have any on. Some may call this skillful. Sadly, there is nothing skillful about it.

Whether or not you know your primer from your restorative lash treatment, when you’re undergoing treatment that dries your skin and steals away your eyelashes in the night, make-up does have its uses. For me, it’s not so much about hiding what’s happening to me, but more about giving me back the bits that make me smile. A hat can hide the lack of hairdo, but I do quite like to see some eyebrow when I look in the mirror.

In an attempt to help me reclaim my face, friends, family and medical professionals have been quick to send me top tips, hints and product recommendations. In the creams department, for example, I am sorted – so much so I’m surprised I don’t just slip right out of my clothes! Having diligently filled the bathroom with everything from Gimme Brow to Brow Zings on the make-up front, however, I do feel like in danger of looking more like a pantomime act than a publishing professional. Painting on eyebrows? I’d rather have a PICC line flush thanks.

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Enter Look Good, Feel Better (LGFB). This amazing international charity offers free skincare and make-up workshops for those coming to terms with the visible side effects of cancer treatment. With volunteers from the beauty industry (who better to teach you about wig care than a film make-up artist?), each session is a masterclass packed with trade secrets and handy tips. In two hours, you get a 12-step make-up routine and all the branded goodies to match (designed around your skin tone). And, even though you do have to sit in front of a mirror for an extended period, you do get an awful lot of laughing to go with your lipstick and eyeliner.

There are many things in life I never thought I’d have to worry about. Matching my foundation so that it blends in with my bald head is one of them. Now, however, I don’t just have the concealer, I know where (and most importantly when) to apply it. I can use green primer without looking like Kermit the frog and can advise you on which eye cream will make your bags glow in certain lights (not a great look for a wedding). I will also never use my eyeliner in the same way again. While ‘looking good’ may be pushing it, I left the session looking a whole lot better and, it felt great. To ease you in, I am only posting a photo of the goodie bag today. I need a bit more practice before I share my new eyebrow-shaping skills with the world and I’d rather not scare you off.

For the first time in my life, I have three amazing beauty secrets to share! First, book on a Look Good, Feel Better event today (they are extremely popular so click here to find your nearest location). Second, Macmillan Cancer Support does a really useful guide called Feel More Like You, which provides expert advice on skin, nail and hair care during treatment. And, lastly, only put green primer on the red bits, otherwise you might end up looking a lot worse than you feel! 

Of course, the one thing that a wonderful workshop such as this can’t do is account for nature. And, by nature, I mean the fact that I currently have a rather fetching mosquito bite plonk in the centre of my forehead. Perfectly timed for the filming of an exercise video tomorrow (oh yes, more on that soon)! That’s something no amount of make-up is going to sort.

Breast cancer lesson number 92: Embrace the change of pace

On By Jackie ScullyIn Chemotherapy3 Comments

Yesterday, I was defeated by the vacuum cleaner. Strange as it may sound, a piece of plastic (albeit a well-crafted one) with multiple arm extensions brought a dust cloud to my otherwise bright and sunny day.

It could have waited a little while longer (even though the moths are getting a little friendly). I really didn’t need to clean the whole house. But, never one to leave a job unfinished, I dug out the vacuum after a lovely day with friends and had a good go at the carpet. And, you know what? I really wish I hadn’t.

Now before you think I’ve lost the plot, this is not a blog post about vacuuming (fun as I know that would be). This is the post about just how hard it is to go from the active, always-on-the-go Jackie with her ultimate to-do list to the chemo Jackie who often needs a bit of a sit down. Satisfaction comes from a to-do list that goes down not up. And, currently it feels like the list is getting longer by the day.

The trouble is, I wasn’t exactly overdoing it. A drive to see good friends, a short walk and a few household chores does not a packed day make. Admittedly, I probably should have saved the hob cleaning for another day, and didn’t need to do that second load of laundry. But, when chemo gifts you a window of energy, it’s really hard not to grab it.

Chemo fatigue is something about which I haven’t written so far. That’s not because I didn’t know about it or hadn’t experienced it. It’s because I thought that by not mentioning it, it might just go away. No one wants to feel like they’ve run the marathon when they’ve only just climbed the stairs – especially not at the age of 32. I spent my 20s watching friends have fun on the dance floor while I battled hip pain. I thought I’d be the one to set the pace in my 30s. Maybe next year…

The truth is, I have no choice but to slow it down. And, if I’m honest, that’s probably no bad thing. Nobody needs to watch TV while simultaneously tidying the coffee table, sorting papers and writing a shopping list. The dust can wait for another day (along with the wonky doorstop and the half-painted wall). Fighting cancer drugs is enough for most agendas and, for now, it has to be enough for me too.

Of course, the physios and occupational therapists do have a few tricks up their sleeves to help us make the most of every day. The secret? Pacing! The aim is to avoid getting into an overactivity-rest cycle. That means doing little and often every day to build up strength rather than trying to cram in a whole week’s worth of activity into one day just because you feel well (and then needing a few days to recover). That does mean planning in tasks (and sticking to the plan), but the plan has to be realistic! The motto is ‘do what you planned – not what you feel like’. It sounds simple. But, when running before you can walk is your default position, it takes a bit of getting used to.

So, for now, I shall try my best to sit back and enjoy this change of pace. And, if you are currently in the middle of a chemo cycle (or about to start), I hope you can too.

Just don’t expect a fluff-free floor on your next visit!