Tag: blogging about breast cancer

Breast cancer lesson 33: Smile even harder when things don’t go according to plan

On By Jackie ScullyIn Fertility, Happiness10 Comments

It’s Sunday morning. Most weeks, I would be enjoying a leisurely lie-in and a lovingly-prepared cup of tea while putting the world – and the week – to rights. On this morning, however, I have had to go to hospital to make sure I don’t have dangerous levels of hormones running through my body. Thanks cancer, first you take my boob and now you’re going after my lie-ins!

It was supposed to be a blood test. And, it certainly started like a normal blood test. Left arm tick. Needle tick. Rubber band to bring up veins tick. Lovely smiley lady in scrubs who called me ‘darling’, tick. Only thing missing? The actual veins.

With right arm (otherwise known as obedient blood giving arm) now permanently out of action due to risk of lymphoedema, left arm is left in charge. Trouble is, left arm doesn’t like to play by the rules… Ever!

So, here’s what happened on my Sunday morning (before my morning cup of tea).

1) Smiley lady preps left arm and starts tapping. Nothing.
2) Smiley lady tries in three places to draw blood from my elusive veins. Nothing.
3) Smiley lady asks whether she can try my leg. I say: ‘go in anywhere. I have a high pain threshold’.
4) I, dutifully, start taking my jeans off. Smiley lady points out that by leg, she meant ankle, so no undressing required. Oops!
5) Smiley lady heads to my ankle. All I can think of is the fact I should have shaved more closely as it looks a bit hairy.
6) Ankle does not play ball.
7) Smiley lady looks less smiley as she asks me to sit outside and drink six cups of water and rub my hands together.
8) I head to the watercooler, realising that I didn’t do my jeans up properly after the aborted undressing attempt. Quick adjustment required.
9) I drink eight cups of water for good measure and look like I am rubbing my hands together in front of a fire. To others in the waiting room, I look like I have ants in my pants. I look weird. I am now the weirdo in the waiting room.
10) I need the loo. I cross my legs.
11) I go to the loo. Oops!
12) Smiley lady, rejuvenated by my epic water drinking, tries again. Four times. Nothing.
13) Smiley lady not smiley any more. I just feel bad that I haven’t been the perfect patient. My smiling looks a bit misplaced. My mind goes straight to the chemo nurses, the blood tests and the cannulas all waiting for me in the next round.
14) No more needles. Just another appointment tomorrow first thing with the anaesthetist. I have been upgraded from weirdo in the waiting room to annoying Monday morning patient with an arm that doesn’t play ball. Lucky anaesthetist!
15) I leave hospital with instructions to keep injecting (while still wondering about my hormone levels). And, guess what? It’s two injections for me today, not one. First Menopur, now Cetrotide wants in on the action!

By the way, if you’re wondering where everyone is on a Sunday morning in London, I’ve found them. They’re in the Assisted Conception Unit, watching me be a weirdo.

So, thank you cancer. You took my lie-in, you took my boob and, because you decided to spread out into my lymph nodes too, you took my right arm (for blood taking purposes).

My left arm looks like a dot to dot. My bladder feels like it has been abused (the body corset isn’t helping) and I really need a cup of tea. But, you know what? Even though I had the burning desire to start wailing in the waiting room, I didn’t. Every time you knock me, I’m going to dust myself off and come back fighting. Just let me have the tea first!

Breast cancer lesson number 32: Dust off your satchel, you’re going back to class!

On By Jackie ScullyIn Reflections on cancer6 Comments

With the volume of tests, examinations and terms to commit to memory on a daily basis, you could be forgiven for thinking you signed up to a course – not a course of treatments – on diagnosis day! Cancer, do you really need your own curriculum? And, do we all have to be graded?

Breast cancer is the biggest module you’ll ever take – and not one any of us would wish to retake or even fail. For starters, it has its own language. You may not have to get the grammar – and you’ll be forgiven for misplaced capitalization – but once ‘benign’ becomes ‘malignant’, it’s best to reach for the dictionary – and fast.

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First there are words that cancer has deemed appropriate to rename. I think armpit is a fairly straightforward word, but cancer thinks it should be something a bit more technical. Enter ‘axilla’! Having been acquainted with my lymph nodes for the first time, it didn’t take long to work out that they are also referred to as lymph glands or axillary nodes (when under the armpit). Why opt for one term, when three will do! And, did you know, far from just having a boob job with tummy tuck and node removal, I actually had a mastectomy with removal of the areola followed by a deep inferior epigastric perforator flap with axillary clearance? Put like that, I am exhausted just saying it, let alone recovering from it!

But, that’s not all. Once you get over the fact things have three names and that once you become familiar with your armpit, it becomes something else, stage 2 of the cancer curriculum gets thrown in. And, by stage 2, I mean acronyms. Navigate the CT, choose between the WLE and the MX and then you get to find out your ER status and whether or not you are HER2 positive (all of which is discussed at length at an MDM). That’s before you get inducted in the language of chemo (FEC, FEC-T, CMF and AC anyone?). My absolute favourite so far: FISH. Don’t be fooled into thinking it has scales and eyes. FISH actually means ‘Florescence in situ hybridization’, which is a way of measuring HER2 levels in cancer cells. Not tasty, and certainly wouldn’t go well with lemon.

Armed with my Breast Cancer Care glossary (thank you so much for creating this superb revision guide), I am transported back to the days of French A-level revision (although without the lovely nightly walks with my parents throwing around vocab). I have always liked vocab tests and like to think of myself as a cancer codebreaker. But, when it feels like you’re being home-tutored in a class of one, and you want more than anything to pass with flying colours, the pressure really is on!

Breast cancer has its very own secret after-school club. And, if you know your MDM from your MX and your DX, then you’re in (whether you like it or not). You often won’t be able to spot a breast cancer patient, but just know that there are people all over the world with new boobs (or adjusted ones) all trying to revise harder than they ever have before.

This time, it’s not about getting top grades (nobody wants a high grade cancer). It’s not about getting a certificate and a gold star (although I wouldn’t say no). This time, the reward is life – something definitely worth dusting off the satchel for!

Breast cancer lesson number 31: What you lose in dignity you gain in confidence

On By Jackie ScullyIn Happiness, Reflections on cancer1 Comment

I lost my dignity somewhere between getting drawn on by a surgeon with a giant marker pen (in front of another surgeon and my parents) and having an unexpected internal scan at my first fertility appointment. That’s not to say that my amazing hospital doesn’t go to great lengths to protect it with their well-placed gowns and paper towels. But, when you’re picking out your clothes based on what gives people ‘easy access’ you know it’s pretty much gone – and the chances of recovering it are very slim (I appreciate that may make me sound a little bit like a loose woman. But, trust me, it’s all in a good cause!)

Surprising as it may be to hear, I don’t want it back. In its place, the hospital has inadvertently given me something so much more important: a massive dose of body confidence. That’s not to say that I have a burning desire to take my top off or wear more revealing clothes (I don’t think the world would ever be ready for that). But, by encouraging me to undress at pretty much every appointment (sometimes just out of pure curiosity and kindness), I have realised for the first time that I’m happy with my lot.

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It may sound strange coming from someone with a large scar down her hip (and four giant metal pins inside), a scar on her neck from a old birthmark, a walk that looks like it belongs on the comedy circuit, an amputated boob (and a new imitation one without a nipple currently), straw-like hair, a scar the length of my tummy and so-called ‘child-bearing’ hips. But, every time I look in the mirror now as I massage my modifications and wash my hair, I don’t see my flaws. I just see strength.

I know I’ll never be stopped in the street or take someone’s breathe away with just one look. I know that I’ll never be able to wear short skirts and look good in a pair of shorts. I also know that when fully clothed I am just another plain Jane on a commuter train. But, what makes me smile is that, beneath the pink cardigans and the navy dresses, I am a warrior. And, if you asked me to choose, I wouldn’t change a thing (beyond getting a serious illness in the first place of course). After all, if the world wanted us all to be beautiful, it wouldn’t have invented mascara! And, I love mascara!

Beauty isn’t about having good skin, it’s about being comfortable with what you have and accepting who you are. You’ll find there’s a cream for everything else.

So, I challenge you to stand in front of the mirror this weekend and smile. Smile at the good bits (I am positive you all have something about which you are particularly proud. For me, I have always liked my eyes and my shoulders). Then, most importantly, smile at the bits that make you who you are (the childhood scar you’d wouldn’t have had if you’d listened to your parents, the finger nail that just doesn’t grow the way you want, the knee that hurts, the big toe that you always bury in thick socks).

Smile because you’re you. I wouldn’t have you any other way!

NB: if you’d like to find out more about scarring and breast reconstruction (with DIEP), head to lesson number 21.

Breast cancer lesson number 30: Life is a gift worth unwrapping every day. Make sure you share it

On By Jackie ScullyIn Brighter Life List, Happiness, Kindness, Pink hearts, Reflections on cancer5 Comments

At the end of last year, before cancer came along, took me by the heels and shook me hard, life had already taught me a really big lesson. Just before Christmas, I packaged up more than 50 individual present hampers for family and friends (please read the rest before you declare, where was mine?!). Looking down at my 200 handmade items – everything from chutneys and jams to bath bombs, soaps, candles, Christmas hearts and spiced festive biscuits for the tree – I remember thinking that all those late nights, packed weekends, paper cuts and missed film plotlines (usually lost while untangling thread) had been worth it, because I was going to make people smile.

I was wrong.

Firstly, I didn’t think that actually hand-delivering them (rather than leaving them secretly on desks or sending them via friends) and explaining what was in each one (apologies to my lovely colleague who mistook a bath creamer for a white chocolate treat) might have meant something to those on the receiving end. Secondly, by burying myself away for months on end I missed more than just film plotlines. I missed friends. I missed ice skating at Somerset House and a warming post-skate (or shuffle) hot chocolate (always like to dream that I am on the set of Love Actually). I was too busy to see the Christmas lights. I flew to Ireland for a wedding and was too ill to raise a toast to my beautiful friends. I woke up on Christmas Eve and wondered just where December had gone. In short, I was so busy doing, I wasn’t actually living. I was so busy making things, I wasn’t actually making memories with the people I love. I thought I was doing something kind. But, I missed the point. And then, as we all know, I discovered that lump!

I woke up on January 1 knowing this would be the year to start doing things differently. And, I think life, knowing how quickly I would fall back into the same routine, thought it would throw me a life-threatening illness just to make sure.

So here’s my conundrum. Over the past eight weeks, I have experienced a lifetime’s worth of kindness. I have tears running down my face as I think about the wonderful words, the pre-surgery chocolate and the thoughtfulness that has filled up my heart, my stomach and my living room shelves (to be honest, any surface at the moment). From the tea lady who snuck me extra biscuits to a well-timed email from an old friend, I feel truly blessed. It seems strange to think that cancer has brought me so much happiness, but it has. My task now, is to both thank all those who are helping me smile through this chapter and to learn to carry this feeling of happiness with me for the rest of my life.

I have spent a lot of time over the last few weeks thinking about thanking. I know now that life is a bit too short to bury yourself in toy stuffing all the time (even though I love my craft). That’s not to say I won’t be untangling thread any time soon (in fact, I have a new sewing machine to play with) but I think people might actually enjoy a little less stuffing and a little more time.

So, here’s my plan. Drawing on the wonderful skills of Kirsty Allsopp, I have made (and will continue to make until the world has no pink felt left) a series of pink hearts with a pink ribbon running through each one. They’re simple to make. They’re great for my arm rehab. They represent in colour and design the challenge I’m facing. They do include toy stuffing, but in limited quantities. And, yes, they’re a little bit cheesy, but anyone who knows me well will know that’s just my style.

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Together with handwritten messages and pale pink envelopes, I intend to hand deliver each one of these hearts to the people in my life who’ve made me smile. No secret gifting, no postage stamps required. Just me, giving my time so that I can give back to those who have selflessly spent time thinking about me. Yes, this may mean getting on a plane or trying to get the name of the nurse who made my stay in recovery so enjoyable. Back in lesson number nine, I said I am not sure I will ever be able to thank you all for the kindness you have shown me so far, but that I would spend the rest of my life trying. I won’t stop until I’ve delivered each and every one.

This is a heart I want you to hang (even if it’s in the airing cupboard or the downstairs loo). Every time you look at the heart, I don’t want you to think of me. I want you to think of all the people in your life that make you who you are and make you happy to be alive. I know that when the business of life gets in the way, it often feels hard to find the time to feel thankful. But, you only get one life. This is your moment and no one else is going to help you seize it. That’s how I feel right now, but all I have to worry about is my next hospital appointment and whether or not I have enough tea bags and milk in the fridge. I want to look at my heart and remember this moment – and the cancer that told me to see the beauty in others and every day.

But that’s not all.

This heart comes with a hidden extra. For every heart I give, I would like an address in return (not because I am a stalker). Yes, this will help me cleanse my address book. But, it will also mean that sometime in the future (should you not move of course), I will be able to send you a little reminder. It won’t come with a note. You’ll probably think it’s been delivered to the wrong house. But, I’d like to send you a little surprise, a little act of kindness that helps you smile through the battles in your life. After all, you’re only human. The heart will fade or get dusty in the attic. Life will get in the way. We all need something to look forward to.

I’m also going to start a brighter life list (watch out for new page coming soon). This is not a bucket list – as my consultant says, we’re aiming for the grand old age of 92! This is a public declaration of all the things I know I want to do, but have always found an excuse to push down the list. They’re not ground-breaking. They’re not all particularly special. But, they mean something to me. By posting them on my blog, I want you to help me tick them off. Please add to the list (if you know me better than I know myself), or join me on an adventure if you want to tick it off too.

Life’s a fight. But life can be kind too – and the people in it. Kindness is what I want to gift to this world, one fluffy pink heart at a time…

NB: it may take you years to receive your heart (I won’t just fling it to you at a party), but please know that if you have shown kindness, it’s on its way!

Breast cancer lesson number 29: If someone gives you the chance to freeze some embryos, grab it with both hands

On By Jackie ScullyIn FertilityLeave a comment

Being a mother has always been part of the life plan (although so too was being married at 28, so I’ll admit it is a pretty rubbish plan)­. Surely you don’t give someone a passion for cooking, baking (and eating), knitting, sewing and playing and then take away the person (or people) most likely to benefit from it all ­– and love you unconditionally even though you have a tendency to throw icing sugar round the kitchen.

The trouble with life, however, is that things very rarely go to plan. In fact, I would go so far as to say that the more I plan (outside of a work context), the more life likes to throw me off course. For a person who finds comfort in to-do list making, itinerary planning and copious note taking, sometimes I just wish life would see it my way and stick to the schedule! We would both be better off.

If you’d told me last Christmas that I might be infertile by the time I pull my next festive cracker, I probably wouldn’t have believed you. In fact, it was only yesterday, when I was sitting on the train with a cold bag of fertility drugs (free cold bag on the NHS can’t be bad) that I started thinking about the possibility of life without a bump (this time a giant one that I would actively want to feel).

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To be honest, on most visits, I feel a bit of a fraud in the assisted conception unit, sitting next to couples who have tried so hard to conceive naturally. For some people, this is their world. For me, it’s something we’re squeezing in between having a boob taken off and chemo. When you’re on the rollercoaster all you can think about is hanging on (and not falling off). It’s only when you’re standing on solid ground again does the reality of what you’ve just experienced set in. Cancer is certainly a pretty unforgiving rollercoaster (certainly wouldn’t pass health and safety) – and I can guarantee you won’t see people queuing up for a piece of the action.

Yesterday, however, I didn’t feel like a fraud. Life has already had one go at my femininity and I would never forgive myself if chemotherapy stopped my ovaries from functioning before I’d had chance to give them a good workout. Sat in the waiting room (a rather plush waiting room with bespoke artworks and a plasma screen playing to itself in the corner) armed with my cold bag, I was just another woman trying her hardest to cling on to the hope of starting a family.

Of course, unlike a lot of women in the waiting room, my body is currently a textbook baby-making machine (so much so that I have to have lots of blood tests as I am in danger of hyper-stimulation). I am happy to report, however, that even with the world’s most pathetic period, I have started my course of Menopur and am one step closer to my next general anaesthetic. It’s Menopur at a certain dosage until a Sunday morning blood test, then I add in Cetrotide (and Ovitrelle gets a look in at some point). Meanwhile, I am also pumping my body with the anti-cancer drug Letrozole in an attempt to keep my oestrogen levels safe. So far, the scrap inside my body is a silent one – and long may that continue.

For those of you considering IVF or thinking about fertility preservation, please don’t worry about the injections. I was delighted to see the teeny weeny needle pop out of the packet and, once the nurse had walked me through the drug mixing and skin squeezing drill, I was all set. As long as you alternate injection sites, follow the pack instructions, tap the syringe to get rid of the air and don’t inject through tights, you’ll be fine (she says, I actually start injecting it myself tonight).

Should I come through chemotherapy with my fertility in tact (apparently a group called the ‘alkylating agents’ are the drugs commonly linked with infertility), the next fertility-related hurdle is Tamoxifen. This hormone treatment (which women tend to take for a minimum of five years) is used in oestrogen receptor positive cancers. You are advised not to get pregnant while taking the drug, even though it can actually make you more fertile. If there’s no sign of the menopause when I complete the course, then there might just be a window of opportunity still ajar that we can squeeze through.

Beyond setting injection reminders (my Menopur injections need to be taken in the evening) and taking my anti-cancer drugs, this is one plan I don’t control. And, you know what, that’s fine by me. I think now is the time to stop writing lists and start making things happen. After all, I need to store up all my planning energy to organise a wedding – something for which a list and a spreadsheet or two would be hugely beneficial. Life surely wouldn’t disagree with that!

Breast cancer lesson number 28: Don’t forget your toothbrush… or the dentist

On By Jackie ScullyIn Chemotherapy1 Comment

There’s one thing I fear more than giant needles, mean cancer-fighting drugs and surgeons with sharp scalpels ­– and that’s the dentist. Don’t ask me why. I have never had invasive procedures, don’t have a clue what real toothache feels like and I have been blessed with lovely dentists (my childhood dentist even had a photo of the town on his ceiling to keep us patients entertained). I know it’s irrational. I know it sounds truly bonkers when I seem to be smiling in the face of everything else. But, there is something about the prospect of sitting in a dentist’s chair that makes me feel a little bit sick! Maybe it’s the fact that when someone has their hand in your mouth, no one can hear you scream.

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I have to admit, however, that following today’s early-morning appointment, I may have to reconsider my view of the dentist. I still hate the chair (more so today because I had to raise my knees to stop it pulling on my tummy ) and the fact every time I go to swallow I fear the dentist’s tools will end up in my cheek! But, I have now discovered a word that makes dentists roll up their sleeves and forget the flossing lecture. The word? CHEMO!

I felt sorry for my dentist this morning. No one wants an 8.30am patient with more problems than can fit on a medical history form (they should make the boxes just a little bit bigger though. Am not sure having room just to put the words ‘breast cancer’ is enough). A few minutes racing through new boobs, fertility, chemo and radio and my check-up turned from a quick blast of dentist speak: ‘one, two, upper part erupted etc’ into a 20-minute ‘let’s-fill-and-seal-what-we-can-to-stop-the-chemo-getting-your-teeth’ session. I reckon my teeth are now so well reinforced, I could make a stick of rock feel like a stick of celery.

I would never have summoned up the courage to go to the dentist two weeks after the introduction of new boobie, had it not already been penned in the diary (I don’t like crossing things out). But, having had such a pleasant and supportive experience, I’m already booked in to go back in June (with the hygienist in a few weeks time).

Humbled again by the kindness of strangers, it’s amazing just how many people there are willing you on and arming you with the tools to stay strong.

Read booklets about chemo (which my breast care nurse did warn me is like reading the list of side effects in a packet of paracetamol) and they talk about the possibility of getting a sore mouth, dry mouth, ulcers, tooth decay, infection, bleeding gums, oral thrush and taste changes! Nice. They also advise people to use a soft toothbrush, brush after every meal, use an alcohol-free mouthwash (which Listerine in photo isn’t by the way), avoid spicy and acidic food (if mouth sore), take regular sips of water and chew sugar-free gum.

Hopefully, with a combination of toothpaste treats and dental checks, I’ll get through this next phase with happy – if not pearly white – teeth.

So, today is the day I say goodbye to ‘the fear’ and hello to mouthwash! My teeth are ready for battle – now I just need to work out what else needs a bit of reinforcement!