Tag: breast cancer

Breast cancer lesson number 35: It’s ok to not be ok

On By Jackie ScullyIn Fertility5 Comments

I have a confession. Last night, I cried while trying to inject myself with my Menopur drugs. I sat looking at the needle that I was about to inject into an already sore and bruised thigh and I cried and I cried and I cried.

I cried not because it was yet another needle (although 13 needles in two days, is not fun). I cried not because the fertility department hadn’t called me back to advise me on dosage so I didn’t know what to inject (although that was a little concerning, because I don’t want to be hyper stimulated!). No, I cried because I was weary and the thought of seeing more blood and being the one to inflict yet another bruise made me sad.

My body is fighting the pains that come from having my tummy turned into a boob and my lymph nodes removed. My body is fighting every time it gets confronted with a needle. My body has a cocktail of anti-cancer drugs and fertility hormones swirling around inside it. My body needs a day off from fighting. The trouble is, that day is about six months away.

I promised myself when I started this blog that I would be honest and true to myself throughout. I have, up to now, been incredibly positive. I have smiled in the face of cancer. I have been diligent in my research and have made all the right noises. I wanted to be a great and patient patient. And, you know what? I will do and be all of those things again and again.

But, right now, as I sit on the sofa I am not being brave or strong or inspirational. Today, I’m just being me. And that’s ok. Today, I am hurting. And, the fact is, that’s ok too. I am writing this post, not because I want people to feel sad for me, but because I want to reach out to those experiencing challenging times and say, it’s ok to not be ok. You’re not made up of a series of powerfully positive personality traits. You just have to be what your body allows you to be when you wake up each day. And, listening to your body and admitting that it’s ok to not always be a pillar of strength is probably the greatest lesson you’ll ever learn. It’s hard, but it’s also quite liberating.

Ask me how I’m feeling right now and I’ll tell you. I feel like I have already run a marathon but am back at the starting line (complete with injuries from the first one) waiting to go again. I want to stop, rest and heal but I can’t, because I’m running for my life. I also want to give Duncan and I the chance to be parents. That’s a big thing. Cram it in between major surgery and chemo and it’s still a big thing. It’s just that there are two other really big things either side fighting for attention.

Yesterday, my lovely oncologist turned to me and said that he was behind me 110% and would be there to support me through this next phase. He also said that there will come a time when I will desperately want it to stop. When that time comes he said he will remind me of the need to keep going. This was a pep talk unlike any other pep talk I have ever received. For surgery, they told me it would hurt, but if I did my exercises, I would recover. It did, I am and I will. For fertility, they told me to inject, inject, inject and then they will eventually inject me for once and take my eggs. I am and they will. The experts are usually spot on. Based on yesterday’s conversation, I should be preparing for the fight of my life. I need to be ready. But, when you’re covered in bruises and you’re just piling on the pain, it’s hard to get ready.

Yesterday, instead of trying to take the title of world’s best patient (I seem to have a burning desire to be a textbook student in every consultation because I think people often forget that doctors and nurses are humans too with real lives away from the ones they’re trying to save), I should have just accepted the support available and explained how scared I am. The truth is, there is no such thing as the world’s best patient (and if there is, don’t tell me because I don’t want to be tempted to apply). No patient is good or bad. Everyone is different and, while it’s nice to be the nice one in the waiting room, I am just another name on a long list of cancer patients. Nice people don’t queue jump or get better drugs (just extra biscuits if they’re lucky). I will continue being nice, but I know that far better than seeing me, would be to never see me at all!

As a quick aside, it’s not all bad being one of the youngest people in the waiting room. While I was waiting for my appointment, a lovely old chap chose to sit next to me because he’d picked me out as ‘the good looking one’. Trust me, there wasn’t much competition, but it still felt good. Not sure he’ll be rushing to my side when I have no eyebrows though!

There will be a time to be strong. But, for now, I’m just going to sit on the sofa, drink tea and work up the courage to take my next injection. Wish me luck. 

Breast cancer lesson number 34: Take one day at a time

On By Jackie ScullyIn Chemotherapy, Fertility7 Comments

Hermione Granger (of Harry Potter fame) has something every single cancer patient needs. By this, I don’t mean books (although you get given quite a few), a wand (wouldn’t say no, though) or intellect (although it does come in handy when tackling those cancer terms). By this, I mean a time turner. Basically, if you ever need to be in two places at any time, you can.

In the absence of said magical device, this morning was a little bit challenging. My task, on the face of it, was simple. Visit the Assisted Conception Unit at 9am for a blood test with an anaesthetist and then head over to oncology for a 9.45am with a cancer doctor. You can usually get quite a lot done in 45 minutes. Not so in hospital. Blink and you can miss a whole day in cancer land.

Armed with a cup of tea (second of the day as first was one designed to warm the veins), five layers and a scarf, I was toasty and ready for my blood test at 8.50am. Little did I know, it would be 11.20am when they actually managed to squeeze me in to take it (by which time I had changed departments, undressed for the oncologist, redressed, and pretty much lost the benefit of all the tea drinking). The good news? He got the blood. The bad news? It wasn’t easy. The good news? At least I can handle the pain even with bad veins. The bad news? Even with a high pain threshold, it still wasn’t very nice.

Why is it that time always seems to disappear quickly when you need it the most? Running between departments certainly doesn’t do much for the stress levels, so first lesson of the day is: one day, one appointment. Any more and you quickly develop an unhealthy obsession with clocks (which all conveniently like to tell different times). In fact, I think my Blackberry likes to tease me by moving forward a minute a day just to play with my mind.

Albeit in the wrong order, I did get to both appointments and, am now, one step closer to the end of my treatment. Abraham Lincoln once said: ‘the best thing about the future is that it comes one day at a time.’ All I can say is, thank goodness for that. Today, I got one long look into the future. Eighteen weeks of chemotherapy followed by five weeks of radiotherapy. My reward for passing this endurance challenge? Five years of anti-oestrogen drug Tamoxifen. If that future came all at once in a giant high-dose injection, I think my body would probably start walking… with my mind not far behind. Put it this way, left arm certainly wouldn’t produce a vein for that one.

Having had a whistle-stop tour through the world of cancer drugs and its wonderful list of side effects (starting with: ‘you will lose your hair’), it didn’t take long for the subject of time to rear its head once more. Because the cancer they extracted so neatly from my body was high stage and aggressive, they want to get going… as soon as possible. For someone still strapped into a body corset for the next three weeks and still currently injecting herself with fertility drugs in any part of her body that doesn’t feel tender (there aren’t many of those left), the prospect of swapping one set of drugs for another lot (while also still trying to laugh and cough without my tummy hurting) is not particularly inviting. Guys, this is really hard – and don’t let anyone tell you any different.

It looks like my next two weeks will be a delicate juggling act of blood tests (both fertility and cancer), appointments (scans, tests and assessments), a quick anaesthetic to collect some eggs and possibly the insertion of a PICC line. Fertility and cancer are fighting for my attention and they both need time. Trouble is, by the looks of both schedules (and the current uncertainty surrounding egg harvesting day) neither really wants to wait in line. Far from avoiding two appointments in one day, I’ll be hard pushed to avoid two at the same time. If life can’t magic up a time turner (or just a few extra hours in each day), I will just have to get used to the fact that the day I wake up expecting might not be the day I end up experiencing. 

The future does looks brighter with a game plan, and I just have to accept that, for the foreseeable future, my time is not my own. All I can do is take one day at a time. If I can get through this unscathed, I will give myself the best chance of survival. Then, I might just have time on my hands – or on my side – once more. 

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.

Image

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.

Image

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.

Image

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).

Image

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.

Image

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!

Breast cancer lesson number 27: We make our choices and then our choices make us

On By Jackie ScullyIn Breast reconstruction surgeryLeave a comment

Decisions, decisions, decisions! When faced with ‘the big C’, every meeting, every booklet, every phone call demands a decision – and usually not a small one. Basically, a day without a potentially life-changing choice in it, feels like a day off cancer. Trust me, there aren’t many of those.

In the first few weeks following my diagnosis, my colleagues were constantly amused by the way in which I would turn up at my desk, do some work, decide about freezing embryos, drink tea, have a meeting, talk about major surgery, drink more tea, write some emails and then weigh up the pros and cons of losing my hair. It was like life was suddenly on fast forward and as long as I could tackle a few major decisions a day, I was just about keeping up (I thought I’d only have to work and plan out a wedding guest list this year).

However big, most of my decisions have been met with nods of approval and sympathetic smiles. I think there is one decision though that requires a bit more of an explanation. A few concerned friends have asked me why, when I could have had a more traditional silicone boob job, did I choose to have my tummy cut open and glued back together (a DIEP flap). It’s something I’ve glossed over in earlier blogs, but I can see why, on the face of it, I must look a little like a bit of a pain junkie or a glutton for punishment. Is a tummy tuck on the NHS really worth the effort?

The short answer is yes, absolutely. The decision to hand myself over to the surgeon and his scalpel may seem brave (or just a bit stupid), but having been armed with the facts, it was the only surgery I wanted to consider (hence the extreme chocolate eating).

Image

Here’s a quick insight into why my tummy fat is now masquerading as my right boob:

1)    Immediate reconstruction or delayed reconstruction?
The ultimate no-brainer. I don’t have much up top as it is, so to be made flat chested on one side at the age of 32 was never really a consideration. I didn’t like the idea of wearing a breast prosthesis and really wanted to keep my cleavage (especially for a wedding dress). Immediate reconstruction apparently leaves less scarring than other types and the results are usually better. Tick, tick and another tick for good measure! The only really downside I can see (and the main reason people may wait I guess) is that radiotherapy may change the appearance of the reconstructed breast (let’s see shall we?!). I also had to wait a bit longer for the two teams of surgeons to be available to operate.

2)    To flap or not to flap?
A slightly more complex conundrum, but I hope you’ll see why the tummy was right for me.

a)    I’m very healthy (apart from the obvious) and have a lot of looking-in-the-mirror time left. Basically, I am not limited due to my general condition.
b)    Implants give a less natural look. Perky boobs would be more attractive if I was having both done. Trouble is, if you have one done, you open yourself up to the possibility of more surgery down the line just to keep you balanced (especially if you put on – or lose – a lot of weight). I like the idea of something that can grow with me and age gracefully.
c)     Implants don’t feel as soft or warm as a breast formed using your own tissue. Never really fancied a vampire boobie myself.
d)    Implants don’t last forever. That means more surgery down the line!
e)    Radiotherapy and implants are not great bedfellows.
f)     An implant is a foreign body that may fail, if your body rejects it. I was next to one woman in hospital who had had problems with two implants and had opted for the DIEP surgery as the last resort. Yes, there is a 2% chance of the tummy fat failing, but that’s good odds in my book.
g)    I know I can cope with pain.
h)    Tummy fat is always an unwanted addition to the body. I’m a great believer we all need our moment in the spotlight. Now, it can feel useful.
i)      Microsurgery is amazingly complicated. Humans wouldn’t have invented such a thing if it weren’t to create great results!

3) Tummy, bum, inner thigh or back flap?
What would you rather? A) A bum with a gap that reminds you of cancer every time you sit down B) Shoulder weakness C) An oddly-shaped inner thigh that makes cycling a bit tricky OR D) a flat stomach. Hmm! Tricky! Not such a dilemma in my book.

Ok, so I’ll admit this is a bit one-sided. Yes, it was major surgery. Yes, there may be more complications down the line. Yes, implants can look amazing. Yes, I have a patchwork of scars across my body. And yes, it hurt A LOT! (and the recovery will take time). But, all things considered, at 32, the short-term-pain-long-term-gain option was always going to win.

I have no regrets. I’d made my decision before I’d left the cancer surgeon’s consulting room and long before the plastic surgeon had had the chance to draw a diagram of my tummy and explain the lengthy list of complications.

My tummy is as flat as a pancake.  My boobie is warm and as real as it will ever be (albeit without a nipple for now). When I am rubbing aqueous cream into my scars (a must-buy for anyone with breast cancer), I don’t think about the lengthy surgery or the complications. I just smile and thank the surgeons for saving my life and giving me another reason to feel thankful when I look in the mirror.

For anyone having to make this decision in the future, good luck! Listen to your body, listen to your heart and I hope you have many more happy moments in front of the mirror.

Next decision for me? What to wear to my fertility meeting tomorrow. Do I have a skirt that can fit over my corset without it riding up and looking like a belt? Pretty complex stuff!

Breast cancer lesson number 26: Make every day a milestone day

On By Jackie ScullyIn Breast reconstruction surgery, Fertility, Happiness5 Comments

Today is a milestone day. Ok, so it’s not exactly on a par with diagnosis day or pathology results day (just a few of the compulsory days Breast Cancer likes to throw in to keep us entertained). But, that doesn’t make it any less meaningful. No, today is the day I come off Provera (my progesterone hormone). That means, in a few days time (if my body plays ball), the fertility side of my treatment will begin. Self injecting here I come!

Image

Moments in time don’t have to be monumental to make it as milestones. When you are strapped into a body corset, even getting to the end of the road can feel like a huge achievement! So here is a glimpse into my world of the major – and not so major milestones – that have made a mark in my diary these last few months. I hope this will help those facing the cancer challenge in the future to understand a bit more about timeframes and what to expect.

1) 24 December: Lump discovery day
Arguably the most important day (and most valuable shower) of my life. I took the discovery seriously, but am glad to report, it didn’t put me off the Christmas ham.

2) 25 December: Proposal day
Ok, so not fundamental to the story, but it’s a lot easier talking about losing a boob and making embryos when you have a man by your side (and a ring on your finger). I am a lucky lady.

3) 27 December: GP referral day
Not the most reassuring of visits I’ll admit, but the doctor acted really fast and referred me straight away. I know a lot of young women are told to come back at another point in their cycle to see whether the lump has changed size, but thankfully, due to it being Christmas, I got my referral. Just another reason to love Christmas!

4) 9 January: Hospital appointment day
Was planned in as the morning before, but due to work commitments, I moved it to the Thursday morning. I know how stupid that sounds, but I really didn’t believe it was anything other than a breast mouse. Let’s just say, I have learned my lesson (and missed a fabulous annual client lunch that day as punishment). What started as a quick ‘feel’ turned into an ultrasound, a few biopsies and a rather awkward conversation with two consultants (they didn’t say cancer, but they did ask about my family history A LOT).

5) 17 January: Diagnosis day
Not a day I’ll forget…ever! Crying, mammogram, more crying, truck load of leaflets and, you guessed it, more crying.

6) 18 January: The day that taught me the value of friendship
Afternoon tea at the Modern Pantry was made all the more sweet with a close friend at my side. Having hidden away for months, this day encouraged me to get out my phone and start planning (trips to Sketch, nights with Darius, relaxing walks and home visits). I love my friends and the colour they bring to my days.

7) 23 January: MRI day
Four needles, one arm full of contrast dye and a noisy test to determine whether or not I could have a lumpectomy.

8) 25 January: Feeling human day
I had a facial. No one mentioned cancer. I walked into a shop (ok, so I was buying track suit bottoms and zip up tops) and someone told me I looked and smelled great. I smiled. It felt good.

9) 27 January: Diagnosis day (part two)
More cancer, another biopsy, a trip on a secret staff bus, a plastic surgeon meeting, pre-op testing and a lot of tummy squeezing. The mastectomy is on, the tummy is borderline.

10) 31 January: Fat testing day
One CT scan and one feel-like-you-are-wetting-yourself moment to check whether I had a good blood vessel in my tummy to transfer to my boobie.

11) 1 February: The day I decided to start this blog
A major mental milestone, this blog helps me stay positive, while keeping my loved ones informed and helping others diagnosed with the big C!

12) 4 February: Carbo-loading day
Ok, so with the volume of chocolate coming through the letterbox on a daily basis, this was more like a two-week period. But, on this day, at a work away session, I ate a lot. I believe this was a major step forward for tummy and will always think about it when rubbing aqueous cream into new boobie.

13) 10 February: Decision day
Tummy confirmed as new boobie. Did a little dance (away from the surgeons of course)!

14) 14 February: Provera day one
The countdown to freezing embryos begins. Won’t mention what happened to Duncan that day. More of a fertility milestone for him than me. And on Valentine’s Day!

15) 15 February: Last supper with D day
Sounds a bit dramatic, but it was actually a beautiful meal at the Cutty Sark pub that reminded me of the importance of taking time out to savour special moments with loved ones.

16) 19 February: Pre-assessment and mobile off day
Memorable not because I found out about leeches, physio moves and arm measuring, but because I turned my work emails off on my Blackberry for the first time in a long time. The red button now only flashes to alert me of good wishes.

17) 20 February: the day I tried my first ever Nandos
Ok, don’t judge me. Not quite the last supper I had imagined. Couldn’t resist. First time ever – and with my parents.

18) 21 February: Surgery day
Wasn’t around much, but hear it went well. Got a new boobie. Got rid of cancer. Not a bad day.

19) 22 February: The day I survived
Owwwwwwwwwww! It hurt, but I got through it, and that is all that matters.

20) 23 February: The day I got up
Getting out of bed is only a big event if you thought you’d never get out again the day before.

21) 24 February: The day the drains started coming out
They don’t hurt if you breathe in and out three times and follow the nurse’s instructions. Go to your happy place and you’ll be fine.

22) 25 February: Big reveal day
I don’t think I’ll ever forget the mirrors or the tears. I did manage to wash myself and pull my big knickers up though, so it wasn’t all bad. I also got rid of that moving mattress (certainly something worth celebrating).

23) 26 February: The day I got released
Hospital day 5 means home time. Felt good sinking down into our old mattress and getting settled with my home comforts.

24) 1 March: The day I did nothing
Having overworked my arm the day before, today was a day of reading and film watching. Never underestimate the restorative power of nothing. I have been too busy in life to notice.

25) 3 March: The day I finished my first post-surgery book
I love books, but could never get into them after my hip surgery. I take this as a good sign my brain is starting to fire again.

26) 5 March: The day I dressed myself
Wouldn’t have made this a milestone a few weeks ago. It’s amazing how much excitement can be gained from putting your socks on. I also passed wound care today, so one step forward.

27) 6 March: The day I walked in the park
Ok, so we had to drive there, but Greenwich Park had never looked so inviting with the early signs of spring. I even got to see the deer and admire the view.

28) 7 March: Pathology results day
The first day of the rest of my life. A big meeting that reinforced the importance of seeking out milestones and making a difference every day. Friday was also the day my wonderful nurse of a mum went back home to leave Duncan and I to fend for ourselves. I am happy to report that we are doing pretty well. Duncan is spending most of his time trying to stop me lifting things (I have resorted to painting my nails in the hope that the frustration of chipping the paint will stop me in my tracks) and we did have a rather interesting discussion about the merits of a scrubbing brush when doing the washing up (he is going to buy one this weekend).

29) 8 March: Duncan does the washing up day (and gets a quick look)
A monumental life event. Ok, so he struggled with the pan, but he did great (even without a scrubbing brush). His reaction to the ‘new’ me was thoughtful and kind. He even towel-dried my back when I couldn’t reach. I also got to remove the sticky mesh on my tummy and the final steri-strips on my boob, so am starting to look less like an accident victim.

30) 9 March: Bye bye Provera day
The window to help preserve my fertility is starting to open. Have also just had a lovely lunch outside for the first time this year.

They may not be big, but for me, each one of these milestones has made 2014 one of the busiest and most emotional yet – and it’s still only March. Each date has made such a lasting impression, I didn’t even need to consult a diary to write this post.

There will be many more cancer milestones (and more tenuous ones) to come (from chemo day one to radiotherapy planning day and the day I get my first tattoo) and I intend to embrace and smile in the face of each one. After all, a life without milestones, however small, is not really a life at all.

So, raise a glass to milestones. May you all have many happy ones this year.