Tag: side effects with chemo

Breast cancer lesson number 83: Dare to bare!

On By Jackie ScullyIn Chemotherapy4 Comments

Today I conducted an experiment on behalf of every woman currently grappling with the physical effects of cancer. I left my hats and my ‘fake’ hair at home, threw caution to wind and started out on my commute across the capital with my bald head in full view.

For me, it was bold (or bald). London, however, with its preoccupied commuters and eclectic fashion sense has a great way of looking in the opposite direction. With the exception of a few pitying stares and a couple of double takes, I was just another person navigating the crowds to get to my destination. I didn’t want a seat. I didn’t want a hand. I just wanted to blend in. And, that’s exactly what I did.

While I do think a ‘new boob on board’ badge may have helped me avoid the elbows of those fighting for a bit of personal space, it was a fairly pleasant experience (as much as a commute across London at rush hour will ever be). It also reminded me that most people have so much to think about, that the potential plight of a stranger across the carriage really doesn’t register.

So, my advice to all you lovely ladies currently without lovely locks is dare to bare! Bald can be beautiful and pretty liberating. I shall leave you with the words of Larry David (slightly amended in itals): “Anyone can be confident with a full head of hair. But a confident bald man (or woman fighting cancer) – there’s your diamond in the rough.”

Breast cancer lesson number 81: The happiest people don’t necessarily have the best of everything; they just make the best of everything

On By Jackie ScullyIn Chemotherapy, HappinessLeave a comment

Jogging (with a bit of walking) as I was around Greenwich Park this morning, I was reminded of a little bit of good that has come from the bad that is a cancer diagnosis.

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I may be missing a few lymph nodes, but in extracting them all down my right side, they also did me a rather nice favour. They took my sweat glands too. That means no matter how hot I get (admittedly there wasn’t a huge amount of sweating going on this morning), I will always feel as fresh as a daisy – albeit only on the right. And, before you ask, the left side doesn’t compensate by giving me a good drenching!

Ok, so it might not be a fair trade when you think of the destruction caused by the cancer itself. But, you won’t hear me complaining. In fact, there are quite a few things I like about my post-cancer body. So much so that I feel part of me should feel quite grateful.

While I may have to live with a hip-to-hip scar across my stomach, the flat result really is the tummy of my dreams (and the scar is shaped like a smile rather than a straight line). Now I just have to keep it that way!

The hair loss may be temporarily (although if my armpit gets a blasting from the radiotherapy that could spell an end to right side armpit growth too), but it certainly is low maintenance. The thought of having no leg hair (the last to go I hear even though I wish it were the first) is actually quite exciting and the only bits I don’t want to part with (now the hair is a distant memory) are my eyebrows and my eyelashes.

And, dare I say it, my man-made boob is pretty realistic. The only problem is, it is already growing (even though the rest of my body isn’t particularly), so I may have to have weigh up my options with the surgeon if little becomes large over the coming months. The natural left one just can’t keep up.

Most importantly, however, I have a newfound respect for my body and the bits that do (and don’t) work. In the park today I jogged further than I have in a decade and it felt good. Even something as insignificant as painting your nails feels like a treat, now I set aside time for it (and don’t apply it while trying to multitask and end up taking it all off again).

This period has taught me that if you want to help others and give back to the world, you must first help yourself.

I know cancer has the power to challenge my life again in the future. That’s why I’m going to give my body the time it deserves now, so it will always have the energy to fight back. 

Breast cancer lesson number 80: How to make the ordinary feel extraordinary

On By Jackie ScullyIn Chemotherapy, Happiness3 Comments

It started with Friday night wine. As a tradition to mark the beginning of a weekend together, it has a special place in my heart. That is, until chemo wrestled in on the action and stole away my tastebuds. Chemo has a skill of turning even a beautiful Cotes du Rhone into the most vinegary plonk imaginable. Trust me, it is not a party trick of which I am particularly fond and it certainly doesn’t do much to give you that Friday feeling.

I am, however, thankful to chemo the comfort-stealer for one thing. By targeting and eliminating life’s pleasures, it has provided me with the opportunity to enjoy them all again as if for the first time. Chemo turned a normal night into one of the best Friday nights ever because it decided to hand back my tastebuds (albeit temporarily) and with them my love of red wine. Every sip of that full-bodied beauty is now wonderful wine memory tucked away for me to draw on whenever the palette goes wonky again.

In lesson number 47 (click here for more), I wrote about the joys of rediscovering your ‘normal’ and the way in which something you’ve taken for granted for years can suddenly become exciting and beautiful once more. I hope that everyone gets the chance to do this (without the chemo drugs in tow), because it really is a source of great happiness.

Yesterday I took a day away from blogging and from cancer to soak up every moment of a typical bank holiday Saturday. And, you know what? It felt wonderful. The contents of my Saturday are not particularly blogworthy, but that’s the point. A breakfast of eggs in purgatory (if you haven’t had this amazing recipe, click here to head to my lovely friend Rachel’s blog for inspiration). A trip to the garden centre. Three hours of sorting and clearing in the garden. A glass of wine in the evening sunshine. A walk in the park and a lovely curry at home. Each one an ordinary moment that made me feel extraordinary. When digging out the composter with a trowel makes you smile, you know that you’ve started to see the world through different eyes.

As proof of our hard work, here’s Duncan in the garden trying out his top for our 10k run (it arrived yesterday). Quite why he felt the need to raise awareness for breast cancer in our garden was beyond me, but it was really nice to be able to spend some quality time together in the mud! (As an aside thank you so much to everyone who has given so generously so far in sponsorship for the run. I will thank you all individually over the next few months.)

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Duncan used a lovely gardening analogy when talking about the year so far over a very normal drink in Greenwich.  He likened cancer treatment to pruning a rose. Pruning is often brutal and can make a flower look messy and sad for a while. But, when pruned, a flower can come back stronger and more beautiful than ever before. He said there is no time to feel sad. Just time to take action and grow stronger. For a maths graduate, I thought that was pretty special. Will certainly make me remember that drink!

I know this feeling won’t last forever. But it is a feeling I want you to experience too. I want you to linger longer over those bluebells in the park. I want you to drink in the scent of spring on freshly-laundered clothes. I want you to read the back of a label of wine and try and find the delicate spices and vanilla (or have fun trying) in every sip. I want you to rediscover every normal aspect of your life and give it centre stage for just a moment. If the normal bits of life can bring you more happiness, just imagine what the surprises and special moments will bring?

May today be an ordinary day that makes you feel extraordinary.

Breast cancer lesson number 79: In search of the ultimate chemo-friendly ginger cookie

On By Jackie ScullyIn Baking, Chemotherapy, Happiness13 Comments

Anyone who knows me well will know that there’s nothing like a 250g slab of butter, a plastic spatula and a kitchen lightly dusted with icing sugar to make me smile. From grannie’s special shortbread and melted stilton and ham rolls to chocolate orange cake and even the odd hand-rolled fondant rose, if it involves a lot of measuring, plenty of bowl licking (oh, raw sponge how I love you) and a little bit of icing, I’m there.

As you might have guessed, I love to bake. The emphasis is usually on taste not presentation (although Duncan was stunned when I once produced a cake that actually ressembled Thomas the Tank Engine for my lovely godson), and there have been more than a few disasters (the less said about the collapsed Quiche Lorraine, the broken brandy baskets and the misshapen macaroons the better), but for me, there is no better smell than the smell of freshly baked goodies!

The trouble is, I love to bake with a purpose. And, when you’re tucked at home with a surgically-flattened stomach and no desire to enlarge it, that purpose is not so easy to find. I will certainly be doing another of my annual charity bake sales in the not-to-distant future, but for now, I am just keen to get creative while filling someone else’s tummy as well as my own. Plus, I have also started to notice that my new right breast is taking a rather larger shape than my left. With tummy fat all over the place (including in the new boob), I have more than just a bulging belly to worry about.

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Last night, however, I went to bed with a dream and I woke up with that purpose. Yes, after discovering that opening the bedroom door can do wonders for night sweats, I had a comfortable night. It also reminded me that I am stronger than the chemotherapy drugs dancing away inside me and now is the time to start fighting back. With chemotherapy cycle three just 12 days away, I am determined to triumph over every single side effect thrown in my direction. That means Difflam on tap (mouthwash for mouth ulcers), ice lollies and frozen grapes (yes, still focusing on the mouth) and a lot of ginger (for the sickness).

For FEC chemo cycle one, having discovered the medicinal benefits of ginger, my beautiful and thoughtful mum arrived on the doorstep with not one, but three bags of homemade ginger biscuits (plus a box of tasty cookies from a friend). I dutifully polished of the lot (with a little help, but not much) and the experience has got me thinking. What is the tastiest, most nausea-relieving and chemo-friendly ginger cookie in the world? Does it exist? Does someone have the recipe lurking in their family history? Is gingerbread better than a ginger cookie? And, could I make some to deliver to my chemo unit to help other chemo patients (and inspire others to do the same)? Why simply take on my nausea, when I can try to help everyone else too?

Of course, I am not ruling out bought ginger biscuits (or ginger bread for that matter). But, there is something about a lovingly-prepared homemade bake that I think might just have the edge. I have heard great things about the Fortnum and Mason stem ginger biscuits and do love a good Ginger Nut. Question is, do they have what it takes to banish waves of nausea from the chemo suite?

So here’s where you come in. Can you help me find the perfect ginger-flavoured treat? In return, I promise to bake every recipe and share my favourites with chemo patients (and maybe a few friends, family members and neighbours too) J. Plus I thought the whole exercise might be quite useful to my wonderful and kind sister-in-law-to-be, who just so happens to have a ‘slight’ addiction to biscuits of a gingery kind! Please post here or send me an email via the ‘Get in touch’ page and I will get cracking.

Spatulas at the ready, it’s time to turn on the oven and turn off those chemo side effects!

Breast cancer lesson number 78: The best way to see what tomorrow brings is to sleep through the night

On By Jackie ScullyIn Chemotherapy1 Comment

Zoladex may be looking after my ovaries during chemotherapy, but in so doing, it seems to have waged a rather cruel war on my sleep patterns. Would I trade in my much-loved slumber for a little bundle of joy? Of course I would. But, given that that little bundle of joy is currently sitting it out in the hospital freezer, I think the sleep deprivation is a bit premature!

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I am pointing the finger firmly at my ovarian suppression implant – designed to send me into a fake early menopause – but I don’t think it is the only culprit. We now have the comfiest bed ever thanks to our wonderful university friends who clubbed together to buy us a mattress. So why do the drugs have to make things so uncomfortable?

For anyone wondering what has been going on in our bedroom for the last five nights it is this. First, I dress for bed in a rather fetching outfit made up of a bra (yes I was a bit naked without it, so it’s back), a vest (pink of course), some pyjamas (navy of course), a pair of matching bed socks (complete with pom poms) and a sleep cap. I look pretty coordinated, but I also look like I am prepared for an ice cave rather than a comfy comfy bed.

Once in my battle dress, I drift off to sleep without a care in the world, but only for about 45 minutes. Then (and you really could set your clock by it), I am jolted awake by the first of many night sweat/hot flush episodes. It’s like I’m in a spa wandering between the ice cave and the steam room, except there is no attractive ice cave, steam room, soothing music or aromatherapy oils to keep me company. It’s just me – and a whole lot of sweat. Off come the socks, off comes the bed cap and half an hour later I am back in the ice cave searching for the socks and the bed cap once more. Hot then strip then cold. Cold then wrap up then hot. Repeat, sigh, repeat. The bed, once a source of real comfort, now feels like an instrument of torture.

Maybe I should be thanking Zoladex for giving me such a wonderful insight into the sleep deprivation that comes with the early days of parenthood. Given there’s no way of knowing whether it’s working, however, I think it’s not something you should be made to endure unless you have a rather lovely reason to get out of bed (retrieving a sleep cap doesn’t really cut it).

Sleep, if you’re out there, please come back. Whatever I have done to offend you, please let me make amends. Sweet dreams are certainly not make of this. 

Breast cancer lesson number 77: What happened when the wig went to town (with me in tow)

On By Jackie ScullyIn Chemotherapy5 Comments

Today, I introduced Suzie to the world (for anyone not familiar with my furry wiggy friend, you can find out all about her in lesson number 57).

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Suzie did well. I am not sure we will make the best of friends (although I am trying) and I doubt very much that she will be accompanying me on many adventures over the coming months, but for her ability to make me blend in and mask the fact I have toxic drugs flowing through my bloodstream, she does deserve a gold star (or maybe just a nice brush!).

It’s amazing what a bit of acrylic can do to make you feel quite self-conscious. Strangely, while you could argue she makes me look more ‘like myself’ than I have done in weeks, I have never felt less so. I guess ‘like myself’ is now what lies beneath, not the pixie cut I left behind on the salon floor a fortnight ago.

When I’m in my wig, I feel like I am pretending to be someone I’m not and I am afraid of being found out. This is not helped by the fact Suzie doesn’t actually move naturally and makes me look a bit like a Wallace and Gromit extra than a real well-coiffed person. I feel like the hair is an act, when the hats and the baldness are now part of who I am. Suzie is also like a hot hairy shower cap (although I am told she’s pretty convincing) and, quite frankly, who wants to walk about town in one of those?!

To try and get used to Suzie, I tested her out on the nurses at the cancer day unit first thing (I had planned to put back-up hats in my bag, but left them on the sofa, so it was hair or no hair). It felt like a safe environment given 80% of the hair in there is probably acrylic. The nurse flushing my PICC line didn’t even blink, but I am not sure she recognised me, even though we laughed all the way through my blood test last week (when I was sporting a blue hat).

I am delighted to report I kept my hair on throughout the dressing change and the following journey into town (although at one point I had a burning desire to whip it off). I did nearly dislodge her once when taking off my scarf and I looked a bit like I’d been dragged through a hedge backwards by the time I got to my front door (thanks wind), but she did hold her own. And, for that, I will be forever grateful to the lovely Suzie.

Back home and back to bald and I couldn’t be happier (never thought I’d ever say that)! Even Duncan is starting to come round to the idea of me having less hair than him. They say blondes have more fun. I am starting to disagree.

While writing this post, I typed ‘bald quotes’ into Google (as you do!) and just have to share the quote that popped up when I did: ‘experience is the comb we receive after we’ve lost our hair’. I say bring on the comb, because my hair’s coming back…

Breast cancer lesson number 75: Don’t wait for the storm to pass. Learn to dance in the rain

On By Jackie ScullyIn Chemotherapy, Happiness2 Comments

This morning I made a mistake. Instead of comforting myself after a night of restless sleep (bald heads, sleep caps and hot flushes do not great bedfellows make) and a day without tastebuds, I stood on the scales. My first day back at work after chemo two decided to wreak havoc on my bloodstream and I started it by making myself feel bad – rather than by making myself the cup of tea I probably deserved. Don’t ask me why I did it. Let’s just say, I won’t be doing it again.

Having now experienced two rounds of the toxic stuff, I have decided that chemotherapy is the medical equivalent of a dementor (feel free to swot up on your Harry Potter knowledge here). Ok, so it’s not exactly a figment of my imagination or a creature of the night and, I appreciate its main target is cancer cells and not my soul, but I do think that if you let it take hold and define your life, chemo will drain you of the hope and happiness you need to keep going. After all, anything that steals away your ability to taste food, sleep well and think straight is not going to be high up there on the Christmas card list.

The trouble with chemo is that if you can only feel happy when you feel yourself, you might be in for a very very long wait. While I am not a big fan of the fact my eggs taste like cardboard, the skin is peeling off my mouth and I am now only at the right temperature when my leg is hanging out of the bed, I know that I need my positivity as much as I need the drugs. Chemo, with its systematic destruction of the body, does not care whether you smile when you wake up in the morning, so you have to.

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While there is no magic Patronus charm (apologies to all non Harry Potter lovers out there) to snap you out of that bad start and banish the toxins from your bloodstream, here are five tiny top tips for taking control away from the chemo 

1) Get your kit on: I may be sporting a rather odd combination of suntops, a sweater and a fluffy poncho to keep warm, but I didn’t sleep in it, so that makes it clothing!Dress for the day and you’ll find it a lot less daunting.

2) Open those curtains: Clouds or no clouds, daylight is always more inviting when you can actually see it. Let it in and it might just lift your spirits.

3) Variety is the spice of life: There is more to life than the sofa, even if it is your current place of work. A day without structure and a change of pace will probably never be a day you wish to repeat.

4) If you have time for Facebook, you have time for exercise: It doesn’t have to involve lycra, and sweat is purely optional, but it’s amazing what even a bit of stretching can do for the mind, body and soul. I’m looking forward to pilates later.

5) Make the little things matter: from an unexpected piece of news and a kind message to a perfectly fried egg (even one you can’t taste), the little things often make the biggest impression.

Of course, sometimes it’s just not possible to change the course of a day. But even if chronic fatigue, mouth ulcers, temperatures and sickness stand in your way today, just remember there is always tomorrow.Chemo isn’t conquered in a day. Don’t aim for 110% if 75% is all that’s needed. And, don’t feel guilty if the day you thought you’d have is not the one you end up living. For all its nastiness, chemo is at least trying to make sure you have lots of tomorrows.

And, one bonus tip: THERE IS NOTHING TO BE GAINED BY STANDING ON THE SCALES ON A MONDAY MORNING AFTER EATING A LOT OF TASTELESS AND UNSATISFYING THINGS THE NIGHT BEFORE!

Chemo or no chemo, it’s a rare day that brings with it the right amount of sunshine. It’s up to you to find a break in the clouds or, better still, smile even when the rain falls.

Breast cancer lesson number 74: What to wear when you’ve got no hair

On By Jackie ScullyIn Chemotherapy4 Comments

As much as I love my new nude maintenance-free do, it has forced me to develop a rather unhealthy obsession with the weather forecast (you should be impressed that I have written more than 70 blog posts and not mentioned this very British subject). After all, this is England, the land of unpredictable weather. And, while I appreciate there are much more challenging climates, as someone who is known to burn when it’s cloudy in February, I have to be careful not to expose my baldie look to England’s elements all too often.

In an attempt to keep my head warm (and not burnt), I have surrounded myself in a various assortment of hats and scarves (still haven’t made it out in Suzie yet) to match my mood and my colour preferences. I am not sure whether London thinks I’m trying out multiple personalities, making a style statement or just perfecting my ‘ill’ look. Whatever the onlookers think, as long as I’m comfortable, having fun and feeling confident, that’s all that matters.

So, here’s me trying out a few new looks. This is the closest I will ever get to a fashion show, so please indulge me.

1) Meet Carrie. She’s my favourite.
Great for: work, play and everything in between (but maybe not pilates or sleeping). This one will probably be worn when the hair comes back

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2) You can’t beat a T-shirt for the head
Great for: daywear and sports and for head shape appreciation

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3) A scarf a day makes your cares drift away
Great for: hot summer days and elaborate knot-tying experiments

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4) Should the English sun make an appearance, I am prepared! 
Great for: the great outdoors

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5) Just because everyone needs to feel like they’ve stepped out of a Poirot movie at one time in their life
Great for: special occasions

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6) It gets cold at night
Great for: bedtime and lazy Sunday afternoons 

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If you hair is clinging on for dear life, all I can say is, have a play. And, if it’s not, it might be about time you dusted off your summer hats to see whether you’re making the most of your head shape. For the first time in my life, I know I am.

Enjoy! 

 

Breast cancer lesson number 71: You may be sore today, but you can be strong again tomorrow

On By Jackie ScullyIn Chemotherapy, Happiness4 Comments

I have only been sick three times in my life. That is, until about 12 hours ago. FEC chemo two brought with it more pink pee, another ice-cream headache and, yes, you guessed it, a bit more vomit than I’d bargained for (three lots so far!). Thank goodness a) I can read my body well enough to avoid the bedding and the new mattress and b) I had an old washing up bowl by the bed (just in case).

Having experienced nausea in cycle one, I went into yesterday’s session prepared. With an extra dose of anti-sickness medication, I wasn’t even expecting to feel sick, let alone be sick. Just goes to show that, when it comes to chemo, even the best laid plans can prove fruitless.

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As with chemo cycle one, the session itself was really rather nice. I passed by blood test and had a good laugh with the nurses. I got my medication ahead of schedule and everyone seemed to like not just my pretty PICC line cover, but my chemo-friendly Shakespearean T-shirt too (it says: ‘Though she be but little she is fierce’ and it was bought for me by a kind and lovely friend).

Everything was going so well. I enjoyed my dinner and even managed a few Miniature Heroes for dessert. Then the side effects kicked in. They were two hours earlier than round one and they were more intense from the start. Once in bed, I had to lie flat. If I rolled to either side and I felt like a spirit level knocked off balance. I tried to deep breathe my way out of the nausea, but it wasn’t long before I was saying hello again to my chicken and rice supper.

My poor tummy (thank goodness I’m back at pilates so it didn’t hurt to retch) and I made it through the night (along with a very concerned Duncan and mum), only to be greeted by another pile of bile-coloured vomit. The worst bit is when you’re tummy is empty, you’ve got nothing left to give, but your body is still trying to expel something.

Eight pills, two glasses of flat lemonade, a cup of tea and two pieces of toast later and I am still (touching all wood available) keeping food down. Let’s hope that I may make it out of my pyjamas/sleep cap/dressing gown/slanket combo at some point and face the world today. And if I don’t, there’s always tomorrow.

This is the first day in a long time that I actually feel like a sick person. You can read it in my face and the bags under my eyes. You can see it lurking under my sleep cap. And, I can certainly taste it in my mouth. Chemo hasn’t defeated me, but it’s giving me a bit of a beating.

Today, I have one objective: avoid vomiting. Chemo drugs, I plan to put up a good fight.

Breast cancer lesson number 70: You can only play the opposition in front of you

On By Jackie ScullyIn Chemotherapy, Happiness3 Comments

I have always been one of life’s great worriers. Growing up, my favourite phrase (much to the frustration of my parents) was ‘what happens if…?’. If there’s an opportunity to obsess about something – from slugs and foxes to magazine deadlines – I’m there with my concerned face and (usually) my notebook!

That is, until now. Cancer, for all its flaws, has a way of putting life into sharp focus. It forces the mind to think about the only things that matter – namely life and death and how to enjoy one while avoiding the other. It certainly doesn’t eliminate worry, but it does have a way of helping you be a little more selective.

Cancer, and chemotherapy in particular, has given me a masterclass in a thing called ‘worthwhile worry’. This rather exciting strand of worry is related to concerns about events and side effects that are happening now and over which I have some control. There’s no ‘might’, ‘maybe’ or ‘what if’ in sight. Worthwhile worry, unlike 80% of the concerns that have filled up my diary over the years, is a good use of mental energy and it has a great way of pushing the unexpected phone engineer bills and missing parcels to the bottom of the pile.

Of course, I am not wishing life-threatening worries on anyone just so that they can let go of the empty washing-up liquid bottle and the overflowing laundry basket. But, I do think it is healthy to reflect on your existing list of concerns and challenge a few along the way. This year has already taught me that time is not for wasting. Time is not for throwing away thinking about things that might or could happen. Time is to be spent tackling the important obstacles that life has a habit of flinging in our direction. If it isn’t, you’ll look back and realise that you’ve got a few more unnecessary wrinkles and no time left to straighten them out!

As FEC chemotherapy cycle number two approaches, I am not worried about the side effects or just how pink my pee will be by 7pm this evening. I may not pass the pre-chemo blood test. I may react badly. But, the only thing I know will happen is that, whatever comes my way, I will get through it. I know about mouth ulcers and I have a stocked medicine cabinet to prove it. I have so little hair on my head, there’s not much more to take. I have a tub full of queasy drops and I’m not afraid to use them. By starting my anti-sickness meds at lunchtime, I am hoping I can stop the nausea in its tracks. I am prepared based on the experience of chemo cycle one. I will take it one day at a time. And, if other side effects wish to join the party, I will worry about them only when – and not if – they occur. Go into it relaxed and you’ll have far more energy to tackle those nasty little surprises.

Duncan was spot on when he said: ‘you can only play the opposition in front of you’. It’s something I plan to do today and for the rest of my life – and I hope you do too. Worry about tomorrow once you’ve got the real problems of today out the way. And, if tomorrow doesn’t look too demanding, don’t worry about it at all. That way, you’ll have more time to spend smiling and being productive and more strength for those worthwhile worries when they do come along. Because, rest assured, they will.