Tag: breast cancer blog

Breast cancer lesson number 38: If at first you don’t succeed, try, try again

On By Jackie ScullyIn Breast reconstruction surgery, Fertility2 Comments

Today was supposed to be a simple day. First, head to assisted conception to try and schedule my egg collection at a time that meant I could keep my oncology appointment on Monday too. Then, head to the breast clinic for the second of my arm measurements in the Lymphoedema clinical trial. In short, have a chat and stretch your arm out straight. Now, how hard could that be?

As it turns out, pretty hard. Nothing is ever quite as simple as it seems. Take assisted conception. It seems the Monday egg collection list that ‘isn’t planned until tomorrow when they know how many people are on it,’ is already pretty much full for the morning. I can only assume that has something to do with the volume of private patients on the collection list. Currently, I don’t appear on any list, but am just hoping my request to schedule it around my noon oncology and blood test appointment is taken on board, otherwise oncology might not be too pleased. Two blood tests, one suppository, one IV sedation, one egg collection and more discussions about toxic drugs await me on Monday. I’m already excited!

Determined to achieve something today, I set off to the breast clinic, practising my arm exercises on the way. As anyone who has read lesson 11 will know, I have dedicated my arm to science in order to help those trying to detect Lymphoedema as early as possible. The challenge for today? Can I get my right arm out as straight as I did a month ago? The answer? No chance. I tried (twice) and failed (twice). We even made a little graph out of the data to show me just how far off I was. My homework? More exercises until my arm is poker straight. They have two weeks to get the reading. I have two weeks to walk my arm up a wall and get it just that little bit straighter – and higher – than it is at the moment. At least I got my height measured so it wasn’t such a wasted trip for measurement man (not something I could fail at so easily)!

For those of you thinking: ‘but I thought she had breast and tummy surgery, so why is her arm hurting?,’ don’t worry, you haven’t missed a chapter. My restricted arm movement is as a result of having my lymph nodes removed (thankfully I did, given the cancer in one of the infected nodes had already spread out into the surrounding tissue). The surgery has given me a partially-numb, quite swollen and very sore right arm. It feels like someone has tightened everything inside my arm and it needs a while to loosen up. Think alien limb (whose only friend is numb new boob), and you’re not far off. With alien arm, I can write (for short periods), I can knit (for shorter periods), I can cook (as long as I don’t lift heavy pans), I can play quoits (albeit very badly) and I can lift tea (at any time), I just can’t carry supermarket shopping or, it seems, pass clinical trial tests.

Apart from a sore arm, the one thing no ANC (which means anxillary node clearance for anyone counting abbreviations after Saturday’s lesson) patient wants is Lymphoedema – or swelling. Without the lymph nodes to drain fluid from the arm, lymphatic fluid can build up in the surrounding tissues. It can be controlled, but, once it has developed (and it can develop any time in the future), it is unlikely to ever go away.

A compression sleeve is not something I’d like to wear with a wedding dress, so I am currently surrounding myself with as many tips and hints as possible to avoid getting injured or infected on that side. No one really knows what causes Lymphoedema (hence why I am on a trial), but this never-again-on-right-arm list should help reduce the risks:

The banned list

1)   Soap that dries out the skin (unperfumed moisturiser is a must for the kit bag). I think I can handle that.
2)   Very hot (or very cold water). They mention steam rooms and saunas, but am hoping occasional use is ok.
3)   Acupuncture on ‘at-risk’ arm (plenty more places to prick thankfully)
4)   Injections (woohoo!)
5)   Blood pressure cuffs (another woohoo! Quite liked it on my leg in hospital)
6)   Blood tests (don’t I know it!)
7)   Lots of weight gain (I will try, but who knows what chemo will do to me)
8)   Walking around with robot arm (being my right arm, am desperate to use it normally, so am not auditioning for a role in Star Wars)
9)   Deep tissue massage unless practitioner is specifically trained (they really know how to take away all my fun)
10) Sunburn (I have never actively tried to get burnt, but my skin just likes turning red when it looks at the sun. This could be challenging)
11)  Biting of nails (tried once, couldn’t work out how to bite them. Won’t be starting now)
12)  Washing up and gardening without gloves (I confess, I have bright pink marigolds, but am yet to put them on)
13)  Waxing or shaving the armpit with a manual razor (am hoping chemo will take care of any unwanted hair for a while)
14)  Tight jewellery or clothing (should be ok)
15)  Heavy shoulder bags (given I love to carry at least two bags at any one time, this is going to be particularly challenging)
16)  Arm strain through digging, pulling or lifting heavy bags (sounds like permission to sit drinking Pimms while Duncan does the gardening if you ask me)

NB: Please comment and add if I’ve missed any tips

Looks like I am going to become very closely acquainted with a large tub of aqueous cream (currently being applied to my tummy and boob) and antiseptic lotion (my new best friend should I get a cut, bite or baking burn).

I may have failed to achieve today’s tasks, but I still left the hospital with a spring in my step. While measurement man was measuring my height in the corridor, my breast surgeon did a double take and, realising it was me, came along to say hello. Impressed by how straight and well I looked, he gave me the biggest of smiles and said how lovely it was to see me. It may not have been a statement based on any medical examination (and I didn’t have the heart to tell him I had failed the arm test), but his smile certainly made me feel I must be doing something right. I’ll take that.

Let’s hope I can successfully be in two places at once on Monday – and that somebody will be able to find a vein!

Breast cancer lesson number 37: Be a kind stranger. You never know when you’ll need one

On By Jackie ScullyIn Breast reconstruction surgery, Chemotherapy, Happiness, Kindness4 Comments

If you’ve ever been at the receiving end of a random act of kindness, you’ll know that a little bit of thoughtfulness can go a very long way. Kindness is the gift it costs nothing to give and the mark it leaves often lasts a lifetime.

I’m amazed and humbled when I think of all the wonderful acts of kindness that have been gifted to me over the years. For example, I will never forget the lady in the bed opposite me when I was recovering from hip surgery. In the absence of a bed on orthopedics, I was sent to the oncology ward (maybe I should have just stayed there and had my boob off at the same time), surrounded by some people with just days to live. Unable to move properly, for fear of triggering the nerve pain in my hip, it was difficult to perform even the simplest of tasks. I remember struggling to reach my water one night, only to find the lady opposite (an elderly, frail and very sick lady) had got out of bed just to fill my glass. It may not sound like a grand gesture. But, to me, the stranger in the bed opposite, it meant everything. I was wheeled out of that hospital just a few days later. She never left the hospital again.

Roll the clock forward six years and I am still touched by the kindness of strangers. Whether it be the thoughtful Waitrose delivery man (who would restock my fridge if I let him), the nurse in recovery who extended his working hours just to make sure I was comfortable or the catering lady who slipped my mum a free lunch, it’s random acts such as these that really underline what beauty there is in the world.

Only last week was I reduced to tears by the kindness shown to me by a company called Bold Beanies (they make fantastic sleep hats and beanies to help with hair loss). I ordered one navy and one pink beanie and requested the words: ‘small boobs, big smiles’ be printed on each one. A few days later I received an email from the lovely Emilienne saying the designer had thought my slogan was so good he wanted to turn it into a logo! I was so thrilled with the results, and touched by the gesture. Certainly something to smile about when the hair starts to fall out!

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Of course, in each of the examples above, these wonderfully kind people probably guessed (or knew from the tubes and the morphine in the hospital) that I was fighting. Trouble is, it’s not always easy to know who might benefit from a smile and a thoughtful gesture. But, chances are, we’re all battling in some way.

Travelling to the assisted conception unit yesterday, I was reminded of the train journey I took to get my pathology results. Mum and I were sat facing an anxious looking couple who seemed miles away from the train carriage in which we were all sitting. I didn’t imagine I’d ever see them again and get to the bottom of their anxiety. Imagine my surprise, when I found myself sitting opposite them once more – this time in the breast clinic waiting room. You just never know. Everyone is fighting. Everyone is hurting.

To the untrained eye, when I’m travelling to hospital now, I’m just a fairly ordinary young person probably on her way to meet a friend and have a nice brunch in town. Look at my breast cancer pin, the fact I move awkwardly when I sit down and the fact I am guarding my right side and you might find the picture changes. At the moment, my illness is pretty much invisible. But, that doesn’t make it any less real or frightening.

We’re all familiar with the concept of giving back, but this is my little plea to ‘pass it forward’ too. If someone is kind to you, find a way to pass that kindness on – or better still, be the one to start a chain of kindness. It could be as simple as opening the door with a smile, offering your next delivery man a biscuit or giving up your seat on the train (I acknowledge that smiling on trains in London may get you arrested). Random acts of kindness can turn a grey day into a day to be remembered.

So, join me today. I want to be a kind stranger and make the world just that little bit brighter… one random act at a time.

 

How to make a drain bag
If you’d like some inspiration, my wonderful friend Fran, has typed out the instructions for making a drain bag. If you’re keen to dust off your sewing machine and join me in making a few, I promise to deliver them to the hospital. With just a few sheets of material (instructions below), you could make the life of someone newly diagnosed with cancer, just that little bit better. Please email me at Jackie_scully@hotmail.com, if you’re planning to pick up some thread!

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Instructions below make 40 (length) x 30 cm (width) drain bag with adjustable strap

NB: I use buttons for the adjustable strap but you could use any kind of attachment e.g. a buckle.

You will need:
½ metre pretty material
½ metre lining material
2 x big buttons
Matching thread

1) Cut out both materials 45 (length) x 66 cm (width), making sure you cut the edges off first (where the material is thicker and you see little pinpricks). Also, cut two lengths of the pretty material for the strap, both 10 cm wide (1/2 metre length).
2) Pin the pretty and lining materials right sides together. Pins should sit at 90 degrees to the sewing line. Sew both sides and bottom edge as one line of sewing 4/8 from the edge of the main bag material. Cut the corners a couple mm from the sewing line.
3) Pin the two strap pieces together along one 10cm edge – right sides together. Sew.
4) Turn the main bag material the right way round and iron (into the hem).
5) Iron the strap seam so it sits open.
6) Fold the main bag material inwards for the top seam (pretty material slightly higher than lining material). Iron and pin. Sew as close to the edge as possible.
7) Fold and pin bag in half with the pretty material on the inside. Sew bottom and side seams.
8) Turn bag right way round and iron.
9) Fold the strip of strap material in half (right sides together). Pin and sew. Turn back the right way round.
10) Fold the end edges of the strap in to form seams and iron. Sew as close to the edges as possible.
11) Pin one end of the strap to the inside of the bag. Use a strong zig zag stitch to sew a square around the edge of the strap to attach it to the bag.
12) For the other end of the strap, you need 4 button holes roughly 10 cm apart (depending on the size of your buttons).
13) Sew the two buttons 10cm apart on the main bag.
14) Done!

Happy sewing!

Breast cancer lesson number 36: What really happens behind the doors of the ACU

On By Jackie ScullyIn Fertility2 Comments

A trip to the Assisted Conception Unit (or ACU) is like a game of musical chairs. One waiting room and three consulting rooms later, and you come out with a bit less blood, a lot less dignity, a bit more information, and a lot more reassurance that you are one step closer to making embryos.

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This morning, everyone wanted me – or my left arm that is. First, the nurse on blood-taking duty thought she might have a go. Thankfully a bit of gentle persuasion was all it took to encourage her that I might be best left for the anaethetist. Next, tucked away in the ‘procedures’ part of the unit waiting for said anaethetist, a second nurse (who was worried about keeping me waiting) said she’d like to have a go after having spied a juicy vein. Smiling as I dutifully extended my arm, it took two failed attempts before she admitted defeat and left me nursing a cup of tea and a biscuit.

It wasn’t long before my knight in soft blue scrubs arrived with a large syringe and an appetite for my left wrist. Eighteenth ‘sharp scratch’ of the week, and we’re there. I am proud to admit that I have still not cried in a blood test, even though my arm is starting to look like I’ve gone a few rounds in the boxing ring.

I never thought I’d say this, but the internal scan part was the easy – if not so dignified – bit (think probe, think jelly and that’s all you’re getting). After having injected myself with a combination of Cetrotide and Menopur for the last few days (balanced with a few Letrozole pills), the scan was to determine the size of my follicles and how well I am responding to the treatment. The good news is, that while my veins might be retreating under the stress of all this poking, by body is still playing ball. The follicles are growing well and, if my blood test results agree, I will be heading back for IV sedation on Monday (no doubt, at the same time I am supposed to be in oncology discussing toxic drugs and having a further blood test).

So what happens next? I wait for a call. If the call keeps me on track, I continue with my injections until Saturday, when I get to mix things up by introducing a ‘trigger’ injection called Ovitrelle and stopping the Cetrotide and Menopur. Ovitrelle is designed to stimulate the final maturation of the eggs. All being well, they will knock me out on Monday, extract what they need and then get to work in the laboratory. There is a suppository in the mix here, but the less said about that the better!

I must confess, it’s not the most romantic way of making babies. But, in what feels like a continuous race against time at the moment, it’s the best chance we have of being able to change nappies, clean up sick and join the banks of people having sleepless nights all over the Capital.

The stakes are high, but let’s just hope the chemo is kind, so we’ll never have to use our little embryos.

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 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!

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).

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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!