Tag: breast

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!

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!

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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.

 

Breast cancer lesson number 23: Pain is inevitable; suffering is optional

On By Jackie ScullyIn Breast reconstruction surgeryLeave a comment

Ok, so this hurts. By this, I mean the fact that I can’t bear touching (or anyone else touching) my upper right arm, the fact that when I laid on a hospital couch with my corset off yesterday, I felt a terrible pulling and the fact that, try as I might to push through the pain, I just can’t sleep on my side (good or bad). I know it’s temporary, but I wish it would hurry up and subside!

This pain is my own fault, so no need to dust off the sympathy violin just yet (the ‘woe is me’ will be over presently). I’ve been keen to cut down my pill intake so that, when fertility starts, I won’t feel like a walking chemist. I thought I was doing the right thing. I thought I was recovering really well. I think I might have been a little bit too ambitious (oops).

For those of you who’ve had major surgery, you’ll know that the treatment of pain is unlike that of treating a graze or a thumping headache. The aim of the game is to eliminate pain from the start, and then ensure it stays away – rather than only taking pills when the pain strikes. For my hip, for example, I was assigned my very own pain team, who were tasked with making sure I didn’t feel pain – let alone think about it. I did pretty well, until the nerve pain descended, making it feel like my leg was being split in two.

This time, when the anaesthetist’s parting words in the recovery room were: ‘I’ve been generous with the pain medication,’ I knew I was in good hands once more! My PCA was packed with Fentanyl to tackle breakthrough pain, and the liquid morphine (Oramorph) was a welcome friend after a walk to the shower room.

Of course, controlled medications don’t usually make the outpatient pill package (I had to confirm my name, date of birth and hospital number just to get a shot of morphine). But the combination of dihydrocodeine, omeprazole, ibuprofen and paracetamol – along of with my meta progesterone pills for fertility – has kept me in a comfortable and happy place since leaving the ward – as long as I take them that is!

One quick aside: as a cancer sufferer, you do qualify for a prescription exemption certificate, which gives you free prescriptions. Ask your breast care nurse for a form, post it off and a nice credit-card sized treat will arrive through the letterbox.

I’m not sad writing this. I’ve learned my lesson, and I am committing this to virtual paper to remind those dealing with pain to ‘take the pills’! I’ve had my pill cocktail to start the day and it’s already making a difference. I am also happy to report that yesterday was not all grimacing and winching. I passed my wound care clinic appointment with flying colours and there was only minimal weeping – from the saucepan-shaped wound on my new fleshy mound, not from me. It was slightly odd that I didn’t feel the cold solution squirted on my new boob or the steri strips being removed, but I won’t complain about numbness (in many ways that’s a blessing).

While thinking about this blog post, I typed the word ‘pain’ into Google and something beautiful appeared. It was the word ‘hope’, redefined as an acronym: Hold On Pain Ends. As long as we have hope, we have the strength to know that one day, we won’t feel pain any more.

In many ways, pain should be the last thing on my mind right now. I have my big pathology meeting tomorrow to determine the course of the treatment. Wish me luck!

Breast cancer lesson number 20: It’s amazing what cancer will take away when you least expect it

On By Jackie ScullyIn Reflections on cancer2 Comments

Loss and cancer are like butter and toast – they belong together. So far, I have focused a lot on the positives surrounding this frightening illness (time with friends, happy memories, mashed potato and the excuse to stay in fluffy slippers all day long). The trouble is, cancer likes to give with one hand while taking something away with the other.

By loss, I don’t mean death (I haven’t gone all philosophical on you). By loss, I mean the things cancer (or its treatment) won’t let you do any more – be that temporary or permanent. We all hear about temporary hair loss with chemo (that might turn into permanent hair loss on the legs if I’m lucky). But there are other losses lurking, waiting to crop up and catch you off guard. The only loss I was actually hoping for was a bit of weight loss, so imagine my surprise when the breast care nurse said I should prepare myself to gain up to three stone while on chemo! I give you all full permission to march me to a treadmill is that happens!  

Temporary loss is easy to handle. The loss of sensation in right my armpit doesn’t trouble me and the fact walking to the station behind my house is like running a marathon is just a small hurdle I will overcome (did one giant circuit today so am gaining strength every day). And, you could argue, not being allowed to lift anything heavier than a kettle for six weeks is a bonus!

Permanent loss is a little different. I can’t say I’ve shed any tears over the fact I can no longer use a razor to shave my right armpit (for fear of lymphoedema) or the fact I won’t be able to hold my arm out straight with a weight in it (was never very good at my Bums, Tums and Thighs class anyway). I am even learning to love my new boobie (complete with a bit of my tummy skin as well as fat) after the old cancerous one was taken away (and I will get a new nipple tattooed on eventually). No, the loss that hit me, was finding out nobody wants me to donate my blood anymore.

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This wasn’t the first loss that came to mind when I thought about life after cancer. After having received two texts and a letter about a possible donation appointment last week, however, I thought I’d give them a call to explain. I did a bit of research, which said it looked like things could return to normal after a good five years (maybe more for the hormone therapy). I called up thinking I was going to save them a bit in postage costs. I didn’t worry when the lady said she’d just have to: ‘go and check’. So, I wasn’t expecting her to say: ‘I’m sorry, you won’t be able to give blood again.’

Now, don’t get me wrong. I won’t miss the little blood bus, the pricked finger and the cotton wool ball you get at the end to cover the hole (I thought a packet of biscuits, a bag of prawn cocktail crisps and a glass of squash in exchange for a pint of blood was a fair trade though). It’s the fact that when you want to do your bit to give something back and the cancer says no, it’s quite hard to take. Loss is easier to accept, when you know what to expect. What else will cancer want to take from me before my treatment is over?

I decided early on in this process, however, that cancer won’t win! So, while I may not be able to give blood any more, I can act as a blood ambassador, encouraging all of those reading this who can donate blood to donate blood. It may just be one pint. You may get the bug and sign up for life (you do get a credit card sized membership card is that sways you). It doesn’t hurt much (unless you hate needles, go white at the sight of blood and find the whole thing a little bit weird – in which case I would say back away from the blood bus). It takes half an hour and it can change someone else’s world! In my mind, that makes it a very good use of half an hour.

I appreciate that it won’t feel as positive being the back seat passenger while you hand over your veins to a nurse. But, I want to turn this loss into somebody else’s gain.

Thanks all for giving me the strength to fight in the face of loss. For every thing cancer takes I will smile twice as hard. Maybe one day, it will get the picture and stop taking things away.

Breast cancer lesson number nineteen: Cherish the small victories; there’s a team of people helping you achieve the big ones

On By Jackie ScullyIn Breast reconstruction surgery, Happiness, Reflections on cancer5 Comments

When I think about happiness, I don’t think about two-week breaks in the sun, new cars (I still have my blue Nissan Micra from 1999), material items or grand romantic gestures (that’s lucky given I’ve only ever had one box of Valentine’s chocs in my life). Happiness to me is a little moment in time that makes me smile. It might be the smell of honey-roasted ham on Christmas Eve. It might be the warmth of the fire on a Sunday afternoon. It might be the sound of a funny TFL announcer on the way to work – or even, just a hot cup of tea and a mouthful of NHS mash. Happiness isn’t hard to find; you just need to a) know where to look and b) want to look!

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This sign above on a ledge by my stairs, reminds me to seek out the small pleasures on a daily basis. When I apply this to life right now, I know there’s no point me thinking about the cancer, the chemo and the possibility of never being able to have a child (just a selection of the big things). There are far more qualified people focusing on those aspects. No, my focus has to be on filling each day with a selection of small victories and fun memories, so that each day, I get that bit stronger and that bit happier. Then, when the big things come along, I can smile even when the lights are out.

Interestingly, a great film I watched the other day reinforced this life view: About Time. I should have read the plot synopsis beforehand (front-fastening bras and cancer make the storyline – oops), but once it had finished, I didn’t think about sadness or death. I don’t want to ruin the film for those who love a good rom com, but, let’s just say, the main character learned to look for the beauty in every moment and celebrate the people and the colour that define his life. He bathed in the detail and made the most of each moment. That made him a hero in my book.

I’d be the first to admit that when times are not so hard, it is difficult to savour each moment, however small – it’s often hard to find time to do the washing up let alone enjoy the bubbles why you’re doing it. But, given it’s a Sunday and you should be taking it easy, now is as good a time as any to give it a go.

So, here are a selection of small victories and happy moments from the last few days to help you think about the little luxuries that have the power the lift you.

1) Celebrating the details: when life forces you to walk slowly, every journey is a voyage of discovery. Yesterday, on a walk up a familiar road I saw things I’d never seen before – from interesting pot plants and funny signs to funky curtain fabrics and quirky door knockers. There is a slight downside to this. I also seem to see or hear about cancer everywhere I go. When I was waiting for the biopsy results, every train carriage had a cancer advert. My mum was reading a book yesterday that suddenly became all about breast cancer. Even Eastenders is having a go. I think I may need to filter out a few of the details!

2) Conquering those socks: ok, so unless you’ve had major surgery recently or are heavily pregnant, I doubt this will be enough to raise a smile. But, for me, it is today’s small victory. Next stop is getting my trainers out and tying the laces properly (daring I know!).

3) Smiling when the post arrives: sift out the bills and the unsolicited clothing catalogues and there is usually something smiling back at me from the doormat each day. I love sending cards and letters and I vow to do even more of this now.

4) Watching a film on a Friday afternoon: now, I am not advocating a duvet day, but doing things that are out of routine, are pretty liberating. I have been subjecting mum to my back catalogue of soppy films to save Duncan and we are laughing and crying through the day. It’s perfect – and it doesn’t cost a thing.

5) Welcoming the knock at the door: salesmen, religious champions and workmen have been replaced with delivery men, florists and postmen with parcels. I almost jumped for joy when my new post-surgery bra arrived the other day. These little punctuations in the day are welcome and wonderful.

6) Cherishing the power of words: each day I am moved by a beautiful text (until my phone decides to automatically delete it), a wonderful post or even a little ‘like’ on social media. Whether it’s a close friend, someone from my past or a friendly face sharing a moving moment from their life, each one touches me more than I will ever be able to say. Messages can be a powerful thing. The best thing is to reach out to someone when they least expect it. Try it with someone you haven’t contacted for a while, it will make you smile too. 

7) Enjoying the comfort of cosy things: if there aren’t enough fluffy things in your life (by which I mean comfy cushions, slankets, fluffy slippers or fleece-lined clothes), it’s time to reevaluate. I many not be able to wear my onesie currently, but I am loving the feel of soft things against my swollen and scarred skin.

8) Smiling down at my engagement ring: getting engaged on Christmas Day will always be one of the happiest moments of my life. The Champagne may be on ice, but the cards are still up and every day I look down at my finger I look forward to day I get to walk down the aisle and thank all the friends and relatives who have helped make Duncan and I the people are today. It may not be a ring or a trinket, but having something close to you that reminds you what you’re fighting for in life and gives you hope, is something to be treasured.

9) Opening the chocolate cupboard: even with a love of chocolate, I was still unable to chomp through all the amazing treats offered to me when I was trying to fatten up for surgery. While I now need to keep the calories at bay, I am enjoying the ritual of choosing two things from the chocolate cupboard each day (may have to increase this slightly, however, given the rate Duncan is munching through J).

10) Emptying the dishwasher: not something you might wish to shout about on the average day, but when you’re stuck in a corset with a hip-to-hip scar, just picking out a pan and a mug is a revelation and a sign that a normal life is within reach.

Happiness is an ordinary day that makes you feel extraordinary. Try it, feel it, and even spotting sunshine through the clouds will make you feel happy to be alive. 

Breast cancer lesson number twelve: The day before surgery does arrive… eventually!

On By Jackie ScullyIn Breast reconstruction surgery6 Comments

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Five weeks, eleven appointments, five scans, thirteen needles, two biopsies, one arm measurement, one flu jab, seven hormone pills, one ‘dry’ January, two emotional freedom therapy sessions, one NLP masterclass, 11 blog posts, one trip to see Darius (sing in a musical not in a concert) and a lot of chocolate later, and it’s here at last! I am not sure I believe it.

So, what does the day before surgery really feel like? It feels real. As anyone who has seen me over the last two months will know, I look well, I sound well, I eat well – a bit too well. In fact, I can’t remember the last time I’ve felt quite this well. That’s why trying to convince myself there’s a serious illness lurking inside me, is no easy task. Usually someone anaesthetises you to get rid of the pain – not knocks you out to bring it on!

In my mind, I am going into hospital well to come out unwell. In truth, I am going in with a life-threatening disease and coming out with my life. I should be celebrating. After all, I get a tummy tuck thrown in, a brand new body part and permission to wear big knickers and sleep for a whole day (inducing sleep will be much-needed after all those sleepless nights). I’ve had worse Fridays!  

My inbox is empty for the first time in years, my blackberry is no longer flashing constantly and my to-do list is on hold. If it weren’t for this little thing called surgery, life would be pretty special. 

Ask me what I am worried about and you won’t hear the words pain, needles, tubes, drains or PCA machines (quite looking forward to being reunited with that temporarily). The fact I can visualise everything from the drip to the catheter makes it all feel a little less menacing. What haunts my nights and occupies my days, however, is the fact that when I wake up tomorrow, I will never be the same again. I can’t prepare for how I am going to feel and, for someone who prides herself in being prepared (I would even love to make a spreadsheet for my weekly food shop if I had the time), that’s a bitter pill to swallow. I am sure bionic booby and I will get on – I am rather fond of my seven-inch scar and 44 holes from my hip surgery. But, ask me what I fear and I’ll tell you: it’s the moment I wake up tomorrow and look down.

Up until now, the cancer diagnosis (strange as it may sound) has been life-enhancing. I have taken what positives I can from the situation and it has put my life (and my constant need to always be on the go) into sharp focus. I have seen more friends and family. I have laughed more than I ever thought possible. I have taken time for myself. I have read a book on a Saturday (although really need to finish Bridget now as the book is so big to carry around). I have cut my hair short. I have experienced criminal behaviour. I have restarted old conversations. I have cried tears of joy. I have seen the beauty behind life’s clouds. I have opened the door to bad weather and danced in the rain. It may be the day before surgery but I am smiling at the fact I am here on a Thursday in February eating chocolates with my parents (can’t remember the last time I saw them in February). I can honestly say that there is very little (if any) genuine sadness behind my smiles. For that, I feel like the luckiest unlucky person in the world. I have been selected for a life and body overhaul – and I am determined to embrace it with open arms.

All I hope is that when I look down at those scars (which will fade with time, massage and a bit of love), I am reminded not of the surgery nor the cancer that was once eating away at me, but of the fact every day can be bright, brilliant and beautiful and make you happy to feel alive. It takes work. It takes strength to escape the daily routine of life when there is no life-threatening reason to do so. But, if ever there was a time to channel that inner workaholic for myself, it is now – and for the rest of my life. Up until now, I have been convinced this disease will change me for the better. Only tomorrow, will I start to find out.

On a more important note, I hope the NHS mash potato is as delicious as it was (under the influence of morphine) six years ago. If it is, I really have nothing to worry about.

I am ready to start out on the road to recovery. First stop, kick this cancer right out of my body. Let battle commence!

Breast cancer lesson number eleven: There may be leeches!

On By Jackie ScullyIn Breast reconstruction surgery, Diagnosis and treatment planningLeave a comment

Ok, so what’s the word I was least expecting to hear today at my pre-assessment clinic? Yep, you’ve got it: leeches (followed swiftly by ‘glue’, ‘girdles’ and, that old favourite, the ‘catheter’!

You could be forgiven for thinking that the introduction of leeches into the breast surgery mix is a bit random. I certainly did. The good news is, the chances of meeting them are slim. The bad news is, they tend to come in pairs (or worse threes) if they do make an appearance.

A fascinating tissue reconstruction fact for you. New bionic boobie (sounds better than tummy fat shoved up top) gets checked every 15 minutes or so for around a day after surgery to make sure it’s still alive. If it’s looking a bit sick, in come Mr and Mrs (and possibly auntie) leech to have a play and help things along. This is a party to which only the boob gets invited, but I have been reliably informed that they will be monitored closely in case they fancy going travelling.

Today was fascinating in many ways. Here are some fun facts of the day:

1)    My lovely breast care nurse mentioned that, because the tummy is tight, it is likely I will be fitted with a band or girdle to keep it all in and make sure the ‘glue’ sticks. That and big knickers! Oh, cancer you are spoiling me.

2)    I am now a research guinea pig. I am participating in a clinical trial with the exciting title of: Multifrequency Bioimpedance in the Early Detection of Lymphoedema. This basically means they will measure the volume of liquid in my arm at certain intervals over the next five years to see whether or not they can spot changes that may lead to a rather nasty arm swelling

3)    I currently have 2.5 litres of fluid in my right arm. This means nothing (yet), but I thought it sounded like a lot of liquid for a little arm.

4)    They use a giant old-fashioned called a perometer to measure your arm. You even get to hold a plastic tool that looks like a cake polisher while you are holding it up in the air (oh the glamour). Note to self: when they say sleeveless top they mean a sleeveless top. The other test lasts about a minute and involves three stickers (one on each wrist and one on the right ankle) and a few electric wires. I was intrigued, as was the nurse getting a lesson in taking the test.

5)    Today’s blood test was completely painless. I didn’t even know when the needle had gone in. Amazed, I applauded her on her incredible skill. Her tip: she used to practise by sewing socks. A skilled phlebotomist, a seamstress and a thifty lady (who also had a similar bag to me) = my kind of lady!

Aside from the leeches and the well-sewn socks, I have established that there are many positives to being on the surgeon’s slab for about a day (beyond the induced sleep):

  • I will have a flat tummy by Saturday
  • I get breakfast, lunch and dinner in bed
  • I get a compulsory week of no exercise
  • Having the lymph nodes out on the dominant arm is actually better because you are more inclined to start moving it more quickly. Less fear of ‘robot arm’
  • There is a good month before I can do any heavy lifting (I would put kettles, groceries and hoovers on that list. The physio did suggest this could be a ‘flexible’ deadline if that helped me avoid tasks for a little longer. Lovely physio, nice tip!
  • I can wash my own hair
  • I probably won’t need to use a bedpan (quiet whoop)!
  • Some pilates moves are already part of the post-op exercise plan (albeit lighter than my normal Wednesday early morning reformer class.

Only real shame is the op part. Let’s not dwell on the seromas, nausea, wound infection or, best yet, dead boob!

Tune in for the post-surgery hospital ‘I-wish-I’d-known-that-before-I-went-in’ checklist!

Breast cancer lesson number ten: There is such a thing as a cancer survival kit

On By Jackie ScullyIn Breast reconstruction surgery3 Comments

Aristotle was a clever chap. In one of his works On The Heavens, he said: ‘it is not once nor twice but times without number that the same ideas make their appearance in the world’. Basically, if you think you’re being original, think again.

Every day, someone is taken into a room and told they have cancer. Every day, someone starts out on a journey, looking for their own ways to find strength and keep fighting. Every day, someone learns a practical tip that is new to them, but that has been discovered thousands of times before by other inspiring people determined to tackle this frightening disease head on. So, today, I want to share a few of the tips that have already made an appearance in my cancer story, so that you – or someone close to you – can get a bit of a headstart.

If every cancer sufferer were able to pass on just one tip to those newly diagnosed, there would be a few more smiles in those hospital waiting rooms. That’s my aim. I am a great believer of strength in numbers. Together, we may not be able to stop cancer affecting our loved ones (I think the experts are doing an amazing job of that). But, by sharing our knowledge, we can make the journey a much more comfortable and bearable one. Happiness is infectious, so help me start a pandemic!

The day after diagnosis day, I made a decision. I didn’t want pity. I didn’t want sympathy (although hugs are lovely). I wanted tips – and lots of them. Since then, I have been inundated with thoughtful messages. In just a few weeks, I have been inducted in the benefits of acupuncture, emotional freedom therapy, life coaching, mindfulness and massage. I have accepted every offer of help (NLP next week) and I feel great – in fact better than ever.

So, here’s the first installment of my cancer survival kit. One small caveat. This is not a substitute for a patient checklist and you may disagree with some of the below. This is me, just trying to be helpful and pass on the kindness of others. Don’t worry, I’m not on commission!

Work out what sends you to sleep now: ok, so this isn’t rocket science, but after having had an irrational fear of dying for the first five days after being diagnosed, I realised quite quickly that, without sleep, I was pretty useless. So here’s a quick tip for you. There are loads of apps and CDs out there to help you sleep, so start experimenting. I have already tried Patrick Browning’s apps as well as a great disk from a psychotherapist friend. I love lying in bed, focusing on different parts of my body, tensing them and releasing them (it feels like they are sinking into the mattress when you let go). Even if you can sleep now, it pays to be prepared.

Talking pillows are great: so listening in bed with headphones on is not great. I went to bed the other day, drifted off and was then jolted awake by a loud piece of music. That’s where a Sound Asleep pillow comes in. It’s a speaker, it’s a pillow, it’s a revelation. In short, it means I can drift off to sound of peaceful chants without Duncan hearing a word. A thoughtful gift from a thoughtful friend.

Protect that boob: I was amazed when a friend at work presented me with what looked like an oversized jelly bean. It was, in fact, a Tender Cush pillow to help me feel comfortable at night and sleep on my side post surgery. Of course, I haven’t put it to work yet, but it is so soft and should be pretty handy.

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Post-surgery bras aren’t just for those with a breast prosthesis: best get a specific recommendation from your breast care nurse, but I wouldn’t have known to ask if some kind soul hadn’t pointed it out. I went to Royce (shop online as the experience of shopping for post-surgery bras on the high street is quite disheartening) for mine and was quite taken with one that says it has healing fibres. I have heard that underwires may be out forever for those who have had reconstruction. Is that true? Can anyone confirm or deny? And remember no VAT to be paid on these beauties!

Buy big knickers: a DIEP surgery recommendation (as discussed in lesson x). They’re really big, they hold it all in. Let’s move on… No photographic evidence required.

Don’t forget to accessorise: I must confess, a bag for carrying around one of my four drains didn’t even feature in my initial hospital kit list. It was only when a friend asked me about them – and I then saw a lady in the hospital carrying one – that it got a look in. Imagine my delight when two handmade bags arrived through the post yesterday from a wonderful friend. The only trouble is, they are far too beautiful to waste on a drain!

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Lip balm and wet wipes are an in-patient’s best friend‏: standard stuff, worth remembering. Bit like preparing for a camping trip – just a lot less fun. No scent, no sting!

Power up: one worry I have is keeping my mobile phone charged when going in hospital. With my right arm compromised due to the lymph node clearance, I think turning around to plug in a charger might be a bit too energetic. Fear not, there are some pretty great external power packs on the market that will charge your phone many times over from the comfort of your bed. Mine has so many different phone and device connectors I reckon I could power the ward!

Reevaluate your wardrobe: apart from my coat and the odd shirt, most of my clothes involve some sort of body contortion when dressing. That’s why I’ve spent the last few weeks stocking up on new navy and pink items to help me feel nice – and not naked. If it zips up or buttons down, it’s in. I have also replenished my stocks of tracksuit bottoms, given most of mine are covered in paint from decorating last year. Not sure the nurses would approve of those.

Don’t be afraid to ask: whether it’s from a breast nurse, amazing charities, such as Breast Cancer Care and Macmillan or fellow patients, ask away! There are superb booklets on offer covering everything from fertility and chemotherapy to specific types of drugs. Macmillan also produce a great Feel More Like You booklet. You can order them online, so keep donating, so they can keep producing and posting them!

Ok, so this is not an exhaustive list, but it’s a start (there are plenty more, but don’t want to blow your mind too early on). Plus, I didn’t think it would be right to talk about health foods, when I am currently feeding my new boob (AKA the tummy) a lot of unhealthy things. Read it, share it and please add tips here if you want to pass on your great advice.

This my little way of giving back, before I get started. Thank you to all those who have contributed to the cancer survival kit so far. Let’s hope it keeps on growing.

Every cancer journey is different. But, chances are, someone out there has a tip to help reassure you it’s all going to be ok.

Breast cancer lesson number five: If it’s all coming off, it’s time to start experimenting

On By Jackie ScullyIn Chemotherapy6 Comments

Today was supposed to be a good hair day. Having booked a colour appointment for the first time in about seven years, I had planned to return to my blonder days (I confess to being one of those people who still writes ‘blonde’ to describe myself, when I am as mousy as they come) and discuss bridal hair styles.

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Let’s just say today didn’t quite go according to that plan! For those who know me well, I know what I like and I like what I know. I’m the girl who orders chicken tikka masala, special fried rice and a garlic naan because I fear the disappointment of trying something new. That includes my bob, which has been a friend to me these last six years.

Imagine my hairdresser’s surprise (lovely Jon, who is the amazing manager of Sean Hanna in Canary Wharf and has been cutting my hair for years), when I sat down this afternoon. He said: ‘same as usual?’ I said: ‘Not this time’.

Ok, so I haven’t gone pixie (that’s for the post-surgery, pre-chemo days in about six weeks time, so watch this space). What I have done is try a Michelle Williams look (as recommended by my lovely colleague Rachel) with the wind on my neck and my ears on show. For me, it’s bold. For those with short hair already, it’s not exactly radical. I appreciate I look nothing like Michelle Williams, but you get the picture. I think Duncan is going through an adjustment phase, but we both agree, it’s a good step towards the no-hair days!

Today wasn’t a good hair day. It was a great hair day. It was a day that taught me if you’ve got confidence and a smile, you have nothing to fear. Whatever the chemo days are going to throw at me, I’m ready.

You may take my hair (preferably starting with my leg hair), but you won’t take my spirit!

Breast cancer lesson number three: Good things do not always come in small packages!

On By Jackie ScullyIn Breast reconstruction surgery, Chemotherapy, Diagnosis and treatment planning, Reflections on cancer8 Comments

As a pint-sized person, I have always been an advocate of the little things in life – Cadbury’s Heroes being a particularly good example (why would you eat a full-sized chocolate bar again?!). My breasts were no exception – until now!

It pains me to say it, but small is not always beautiful. In fact, in breast cancer land, small is pretty annoying.

My world view was crushed on what I truly believe to be the weirdest and most surreal day of my entire life. Thankfully, I wasn’t alone this time – although I think my amazing mum (hello mum!) could have been forgiven for wanting to go and lie down in darkened room about half way through. Massive credit to her for laughing along with me throughout – even without lunch.

It was supposed to be one 10am meeting with a surgeon and a breast nurse to discuss the MRI results and plan what I thought would be a wide local excision or lumpectomy (in other words, chop it out, move on to chemo). I thought I’d be back at work within the hour.

Here’s what happened:

1)   Surgeon (who is hilariously funny and witty for a surgeon) explains that the tumour is more like 40mm than 28mm and there are two other suspicious areas that need investigating (just to qualify, this part was not funny or witty). Still smiling though!

2)   Surgeon examines me – and brings mum in too for a quick feel – and confirms that my breast is just too small to save (thanks nature). Bit scared and annoyed with nature!

3)   Surgeon explains the two ‘reconstruction’ routes, one of which involves taking out my tummy tissue to give me a new mound. Has a feel of my tummy and thinks they might just be able to use it. Laughing now at fact tummy is being squeezed!

4)   Surgeon refers for second biopsy to investigate findings and my kind breast care nurse loads me up with breast reconstruction literature. Still smiling… just!

5)   Care staff at biopsy number two turn out to be very entertaining and lovely. Smiling lots to block out fact my boob is yet again being explored – trying not to laugh otherwise might disturb procedure.

6)   Lovely breast care nurse points us in direction of secret staff bus to whizz us to another hospital. Mum and I laugh while trying to look like serious hospital staff.

7)   Meet nurse quickly and get weighed! Best weight in three years (yay for dry January and losing my Christmas podge). Feeling pretty smug!

8)   Meet next nurse who makes us tea and explains that the Dutch only put milk in their children’s tea. Smiling at having discovered something new!

9)   Meet plastic surgeon, three nurses and a doctor who explain tummy procedure and give me a quick squeeze. Check leg and bum and confirm just too tight (oh yes!). Feeling pretty smug again at weight loss.

10)  Plastic surgeon thinks tummy might have enough fat to go ahead with procedure, but needs to do a CT scan to check. Feeling less smug and starting to regret losing Christmas weight. Maybe need to make a batch of mince pies!

11)  Surgeon refers me to pre op assessment (why not, while I’m here)!

12)  Behind door number one, nurse one takes blood pressure. It’s high (I would say this wasn’t surprising)! Second time round, I pass and move on to MRSA testing. Smiling due to the fact I like passing tests!

13)  Behind door number two, nurse two (who told us a lovely story about buying herself a dressing gown for Christmas and wrapping it up under the tree because she’d always wanted one and never got one) talks me through op day. Smiling lots at having met a friendly lady who would have otherwise remained a stranger!

14)  Behind door number three, nurse three takes blood. Uneventful. Smiling at fact needle went in vein and was uneventful!

15)  Op date confirmed: 21 February. Phew! Bit tired of smiling now.

So three waiting rooms, two surgeons, 15 care staff, six appointment rooms and six and a half HOURS later, and my mum and I are hugging and laughing at the tube station as we say goodbye.

While neither the day nor the results were what I was expecting when I woke up that morning, I was a) humbled and inspired by the amazing hospital staff and the way they fast-tracked me and b) happy to have spent the day experiencing and laughing through it all with my mum. Every cloud…

Tune in on Monday to find out if I passed the ‘fat’ test…