Tag: breast reconstruction

Breast cancer lesson 175: You don’t need a nipple to feel whole again after cancer surgery

On By Jackie ScullyIn Breast reconstruction surgery, Moving forward, Reflections on cancer2 Comments

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A few days ago, I called the hospital and took myself off the waiting list for nipple reconstruction surgery.

It wasn’t a rash decision (many a cup of tea has been needed in the build up), but as far as decisions go, it is among the best I have ever made.

I must confess that while I would have loved to have said to colleagues and clients: ‘Sorry, I won’t be able to make the meeting as I am having my nipple put on that day’, and, while part of me liked the idea of being put back together again, a huge part of me was shouting: ‘Why?’

After surgery and finishing active treatment, it felt like the natural next step (why wouldn’t I go for a cherry on top’?!). Sitting in front of the surgeon talking about cutting and snipping and stitching back in October, it seemed like a quick and painless procedure and an easy way to forget the past.

But, ask me what I am thinking about six months on and I can tell you, it’s not a pink, fleshy (albeit realistic) blob on the end of my fat-filled right boob. It’s the fact that I am happier, healthier and fitter than ever and a nipple really won’t add anything – except a ‘permanent outy’ that no amount of warm weather would conceal.

Now, I realise that I was more curious than in need of an extra asset. And, curiosity just isn’t a big enough reason to brave a hospital gown, needles, a knife, an operating table, a series of nipple tattoos and the memory of a year in the warm, but treatment-focused arms of the amazing NHS.

I guess you might call me lucky. Strange as it sounds, I don’t want to hide from my scars. Each one carries with it a story that makes me who I am. Each one reminds me not to worry when I get caught up in the complications that come with everyday life. Each one keeps me grounded. Each one is a reminder of all I had to lose and all I have gained as a result of this challenging – and yet weirdly fulfilling – period of my life. My scars are just as much a part of me as my right foot that turns in and my dodgy hip. I am not looking to replace them, but embrace them. I have no ambition to be a topless model so why would I cover up what is always covered up.

I read my story in the lines that cancer has given me and I smile. I smile because they remind me not of pain and surgery, but of just how far I have come – and of just how far I want to go. It is with these scars that I will be lining up on the starting line of the Bath Half in two weeks (and the Pink Ribbonwalk in July and the Royal Parks Half in October). It is with these scars that I will be flying to the Caribbean (yes, leaving Europe for the first time) with my new size 6 tankini (sun-exposure conscious as ever). And, it is with these scars that I hope to make a difference on this wonderful planet of ours. As I said, all the way back in lesson 21: ‘scars remind you where you’ve been and how hard you worked to get there. They don’t have to dictate where you’re going, but they can give you the strength and determination to make sure the path you do choose is a beautiful, interesting and inspiring one.’

Last year, I came face-to-face with my own mortality at the age of 32. I had the chance, at a young age, to reflect on what my gravestone could say and I decided the message needed to change – and fast. I can guarantee it won’t ever say: ‘Here lies Jackie, cracking right nipple.’ What I hope it will say (and not for a very long time) is: ‘Here lies a woman who smiled, laughed, lived and loved – and dedicated her life to helping others do the same (admittedly may need editing as I am not in the market for a tomb)! Sounds morbid, but I have plenty of years to get it right.

Breast cancer lesson 162: Why it’s hard not to laugh in a nipple consultation

On By Jackie ScullyIn Breast reconstruction surgery, Reflections on cancerLeave a comment

The trouble with attending a hospital appointment on your own (don’t worry, I am not throwing caution to the wind after lesson number one, these are very routine appointments), is that you have no one to cover you if you need to pop to the loo. That’s why, I spent the best part of my 90-minute wait on Monday working out the best time to take the chance – only to realise it takes less than a minute to get back in the waiting room if you’re focused.

The reason for this latest waiting room visit was to meet the plastic surgeon and discuss reconstruction phase two. Phase two is, of course, the ‘return of the nipple’, if we see phase one as ‘destruction of the boob’. That was my understanding of the meeting anyway, so I was amused when the registrar took one look at me and asked me how the chemo was going! And I thought I actually had a bit of hair.

Now we are onto the cosmetic side of the job, I am finding it hard to treat the whole thing as surgery. I diligently took my top off on demand and smiled as we went through the usual: ‘we can tidy it up of you’d like to look even on both sides’. My stock reply tends to be: ‘I am very happy with my set (asymmetrical as they are) and I wouldn’t consider another general anaesthetic at this stage. Plus, the right one will grow and shrink as my weight fluctuates, so I will always be pretty lopsided.’ It is very kind that plastic surgeons don’t want me to be wonky, but I am just happy to be here – imperfections and all! Trust me, if they fix the boobs, their perfection would just look out of place.

I did consider stopping without a nipple given I am happy with my fleshy mound. But, I feel like the journey won’t be complete without finishing it off. It will be a permanent ‘outie’, so I think it will be padded bras all the way after surgery. It will also be tattooed so that it matches the left side.

Today was quite interesting in terms of reconstruction options. It seems there are two ways to reconstruct the nipple (or should I say we only discussed two). The first is a local flap, created using existing skin attached to the reconstructed breast. The only downside it seems is the fact that it would leave a little scarring to the sides of the nipple, but this would be covered up by the final tattooing stage of the process, Yes, I didn’t think it was enough to get radiotherapy tattoos. Now I want to tattoo my boob.

The second option is to remove skin from another area of the body to create the ‘protrusion’ (sounds a bit scientific for a boobie). The downside to this procedure is the fact that there would be two wound sites and the fact the grafted skin may not take to its new home.

For me, this didn’t feel like decision that would be hard to make. I have opted for the local flap and will take the extra scarring! I don’t fancy carving up any other body part for an extra bit of skin. It is already part belly. It certainly doesn’t need to be part anything else.

So, in six months time (you have to wait for the boob to settle after radiotherapy), I will, at last, complete my reconstruction. It’s a local anaesthetic. It’s a quick procedure. And I would bet money on it being one of the strangest experiences of my entire life. (I must admit, the consultation was pretty funny, with the highlight being the young doctor poking my boob with this finger to point out the position of the nipple. I kept thinking to myself, I haven’t been nippleless that long!)

It certainly is amazing to see what these plastic surgeons can do. I just never thought they’d be doing them to me!

NB: In other news, as part of Breast Cancer Care’s #hiddeneffects campaign for Breast Cancer Awareness month I put together a piece on smiling through cancer. Click here if you’d like to have a read.

Breast cancer lesson 140: Ten things that will make breast reconstruction surgery that little bit easier

On By Jackie ScullyIn Breast reconstruction surgery2 Comments

I have a confession. In lesson number 72 (click here for a quick refresher), I talked about setting my boobs free and tucking my post-surgery bra away in a drawer rather than wearing it to bed. Truth is, the boobs were free for all of about a night, before I found myself reaching for the unattractive-yet-feels-like-you’ve-got-nothing-on bra once more. I don’t need to wear it. But, I don’t feel quite right sleeping without it.

The reason I am telling you this is that I have just finished typing up my breast reconstruction surgery tips for the cancer kit list (click here to view both chemo and surgery suggestions) and I have come to realise that I am really quite attached to this beige front-fastening number. In hospital, it meant easy access (nurses could check whether my breast was still alive without moving me). At home, it remains one of the most comfortable things I own. And comfort – rather than style – is all that matters now! Life is way too short to wear wired bras that dig into your side or high heels that make your feet swell (and you look like you’re drunk when you haven’t even been drinking). The other reason I am telling you this is that I was asked not to wear it last night and this morning (as part of a secret charity mission) and I actually really missed it. Who would have thought a bra would bring me so much happiness!

As you can imagine, the front-fastening Royce bra (click here to see it in all its glory) sits at the top of my ‘ten-things-that-will-make-breast-reconstruction-surgery-that-little-bit-easier’ list. Excluding painkillers (an essential part of any surgery that involves a tummy tuck), here are a few of my favourite things:

  • A front-fastening bra: One more mention for good measure! It’s so important to get the right bra for you. I took my bra with me into surgery so it could be put on while I was asleep. Due to the swelling, it’s good to go up by one back size so the bra doesn’t feel tight (you might want to bring a few sizes just in case and the return the one you don’t use).
  • Button down nightshirts or nighties: I think surgeons and nurses alike would queue up to see you wrestle with a top that doesn’t button up in the days after surgery. When there are wounds, drains and a new boobie to inspect, it pays to make things simple. Regardless of the time of year, aim for lightweight layers rather than thermals (it can get pretty hot in hospital). I would aim to bring two nightshirts/nighties so you can change (and encouraging a friend or relative to rinse them through would be great)!
  • Big knickers: Bridget Jones would be proud! If you’re planning on laughing, coughing or moving around, big knickers or ‘magic pants’ are a huge help. They can be quite tight to get on and off, but they can make getting in and out of bed a lot easier. They’re handy in the weeks after surgery too. It’s worth bringing more pairs than you think you’ll need for your hospital stay, so you don’t run out (plus a few normal cotton pairs too in case you get too hot). I can’t say I am wearing them now, but I think fondly of our time together.
  • Drain bags: If you’ve been advised that you will have drains after surgery (they look a little bit like sports bottles attached to a tube), it is really handy to bring a bag (for example, a natural shopping bag) that you can slip over your shoulder. This frees up your hands if you need to steady yourself while walking. People do make and gift fabric drain bags too, so it’s worth asking your breast reconstruction nurse if there are any available. Same goes for an easy-to-carry wash bag! If you’re feeling crafty, click here for a drain bag pattern (you will need to scroll down a bit).
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  • Anti-bacterial gel and wet wipes: The bathroom can seem like a long way away if you’ve had DIEP surgery. These will help you cut a few corners in the early days!
  • External power pack: Keeping in contact with friends and family is a great way to make those hospital days go faster. If you’re worried about keeping things charged up (or taking lots of chargers), you could consider buying an external power pack. These can be charged up before you’re admitted and will power your phone many times over without needing to be recharged. They also come with lots of different connectors so you can power many devices. Fewer wires mean a lot less hassle.
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  • Adbo binder/corset: Not one you can bring with you, but worth requesting if you are finding the tummy tuck tight after surgery. I wore mine for six weeks and it was such a support when it came to moving around and laughing. The binder/big pants combo is amazing!
  • Breast pillow: Sleeping on your operated side may not be possible for a while after surgery. That’s when breast pillows can provide real support – not to mention much-needed protection should you share a bed. Some people use breastfeeding cushions, but there are specific breast surgery products, such as TenderCush pillows, that are great for easing discomfort. You might also want to change sides of the bed temporarily to protect your operated side even further. Setting this up before surgery means you can just sink into bed on your return home rather than rearranging your belongings.
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  • Post-surgery caddy: There is nothing worse than getting comfy to find your book is out of reach and your lip balm is in the other room! Setting up a tray or bag of essentials next to your chair is a great way to make sure you have all the essentials close to hand.
  • Cream: Once your wounds have sealed, you will be encouraged to massage them with cream to help things recover even further. I love Moo Goo’s Udder Cream. It smells wonderful and is highly recommended as a repair cream. You are also surrounded by cow puns, which makes this both creamy and amusing!
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You can read the full list in the cancer kit list section. And, if you’re interested in reading more about the breast reconstruction days, why not head to the ‘breast reconstruction’ category (I am excited I have now categorised all my blog posts for easy reference).

If you’re preparing for surgery, then I wish you all the best and hope that these tips will help the days in hospital fly by.

And, if you’re not, then please do one thing for me and make sure you have a comfy bra (not just a sexy, lacy one that makes your bits spill out). There is no strong evidence to suggest wearing an ill-fitting bra will give you breast cancer. But I am a great believer that happy people are comfortable people. And, I want you all to be happy.

And, if you’re a man, you might just want to pass this advice on. I am not sure you need a bra (or big knickers for that matter).

Breast cancer lesson number 117: Turn your scars into stars

On By Jackie ScullyIn Breast reconstruction surgery8 Comments

Having spent most of my 32 years trying to creatively hide my tummy from the world (I’ve worn bikinis on rare occasions and was once asked to ‘put it away’), I am finding it quite amusing that, now it has a nice long scar right across it, people are suddenly rather fascinated with my not-so-fleshy midriff. Only recently was I at an event where two ladies (interested in their surgery options) asked me to lift up my top. And, as soon as you mention relocating your belly button over drinks, you can tell people are trying to work out just what is going on around your knicker line.

So, for one post only, I have decided to put you all out of your misery and flash my still-flat-but-not-for-much-longer-thanks-to-chemo stomach. For those of you who have stumbled across this blog or would really rather not become acquainted with my tummy (I wouldn’t blame you, it’s still a bit angry), I am tactically posting a pictures of the baked goods that are currently in my stomach first, so that they show up on your feed. To distract myself from the dizzy spells and peripheral neuropathy, I have spent the morning baking (and, of course, licking the bowl, which for anyone not connected to me on Facebook, is today’s #100happydays moment). (Visit lesson 112 here to find out more about my #100happydays project.)

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And, here it is ­– one big smiley face, which will fade over time (and after I have massaged a truck load of cream into it). You can also see the two drain marks just above my trousers, the angry little belly button and the mole (to the side of the belly button) that had been hiding under my boob until the surgery moved everything down. It’s flat, it’s happy (although admittedly it is a smiley face without eyes) and it’s all me. I am proud of my tummy and I am proud of this scar. It reminds me every day when I look in the mirror that I was stronger than the cancer that tried to take my life away.

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It seems I am not the only one happy with my new look. At my plastic surgery check-up on Monday, my breast reconstruction nurse and the doctor on duty were pleased with what I like to think of as my recent body enhancements! The doctor did confirm she thought the right one was larger than the left (I think they are quite fixated on making me even) and we did have a laugh about tops that exacerbate the situation. But, with radiotherapy planned, the nipple and tuck chat is now on hold until the autumn. By this time next year, I should be fully reconstructed!

Don’t worry, I won’t be making a habit of flashing the flesh. My tummy can’t be exposed to the sun for a good year at least, so it is now going back into hibernation. And, as for my new boob? No chance! And, for any ladies out there considering DIEP surgery, I would highly recommend it. While, at times, the recovery can be tough, the results are more than worth it.

Thank you surgeons for finding a practical use for my tummy fat, thank you cake and chocolate supplying friends for making the surgery possible and thank you tummy for healing so nicely. I will try not to feed you with too much cake in future, so you retain your shape just that little bit longer.

 

Breast cancer lesson number 55: Celebrate your independence day!

On By Jackie ScullyIn Breast reconstruction surgeryLeave a comment

Naughty right boob wasn’t the first thing on cancer’s hit list after diagnosis day. Cancer started with my keys. Three sets to be precise (on one giant keyring).

The first, my work keys, were handed over when I realised I probably wouldn’t be opening up across town at 8am any time soon. The second, my car keys, were wrestled off me when it became clear tummy tucks and emergency stops were not particularly compatible. And the third, my house keys, were surrendered when, on 21 February, I travelled to hospital knowing I wouldn’t be coming home that night.

I have always felt comforted by a heavy set of keys (even though Duncan thinks they make me sound like a prison warden). With keys, comes independence. And, with independence, comes happiness. Of course, it didn’t take long to regain control of my own front door. But, my keys have been pretty light of late as cancer has tried its best to ground me.

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Yesterday, at my six-week post-surgery check-up, I took one giant leap away from cancer and towards independence. Impressed with the way in which my body had risen to the healing challenge, the surgeon declared that – providing I could do an emergency stop – I was fit to drive. I also got permission to have a bath, have a massage (to help the scarring) and explore non-wired (but not post-surgical) bras. As appointments go, this was pretty exciting.

Expecting to see one of his team, rather than the surgeon himself, I was delighted to find him in the consulting room waiting for me. After quizzing me on just how ‘tight’ the tuck was (the answer being ‘very’), he smiled and explained that, had he not worked for a while in Taiwan and seen lots of really slim women recover well from the surgery, he probably wouldn’t have attempted it. All I can say is, thank you Taiwan!

I had to laugh when he congratulated me on my healing abilities (he said he just had to do the mechanical bit). I am not sure I will ever believe him that watching box sets, reading books, writing blogs, taking walks and doing stretches is as amazing as microsurgery, but when you’re topless on yet another hospital couch covered in angry-looking scars, any compliment is nice to hear.

It was a great feeling being able to thank my surgeon for helping save me that day back in February. It was also a great feeling knowing that with every appointment and every day that passes, cancer is continuing to lose its grip. It took my house keys. I took them back. It took my car keys. As soon as I get home to my car at Easter, they’ll be coming back too. And, one day this year, I will be back in the office opening up at 8am… or maybe 8.30am :-).

Breast cancer lesson number 52: The memories do fade. Let them go

On By Jackie ScullyIn Breast reconstruction surgery, Chemotherapy2 Comments

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Walking through Greenwich Park on Sunday with Duncan, I started laughing when I remembered that only four weeks ago, I wouldn’t have been able to get to the park – let alone walk round it. It’s hard to imagine now that walking to the lamppost up the road was once comparable with climbing a mountain. It’s also hard to imagine that the train station once felt like it was on another continent, not at the back of the garden. What a difference a few weeks can make.

The great thing about the human body is that it not only has an amazing ability to regenerate and recover, but it also knows how to forget. While I can remember that there was post-surgery pain, I couldn’t describe it to you now. While I thought the fertility injections were at times relentless, when I threw away the last of the instruction leaflets yesterday, I didn’t even flinch. While at the time important, every procedure, every painkiller and every appointment is now packed away in the bit of my mind marked ‘experiences’. I can draw on it, but it neither haunts nor upsets me.

That, in my view, is how I am coping with this entire period and managing to smile through it all. I am neither particularly brave nor strong. My body just forgives me for every needle and enables me to forget. Every day brings with it a whole raft of new experiences, and my mind is so busy filing, it won’t let me dwell on each one. It just lets me get on with moving forward and confronting the next challenge. Thanks body. You may occasionally throw me a serious curveball, but you are pretty amazing when it comes to helping me overcome each one.

In Lesson number 19, I talked about cherishing those small victories and getting to that first lamp post (which will always have a special place in my heart). Six weeks on from surgery, today is another day for celebrating a small victory. Today is the day I get to remove my abdo binder, lovingly known as ‘the body corset’. For six weeks, it has been an extension of me. For six weeks, it held me together (literally), made me feel like my body wouldn’t rip open, stopped me eating in large quantities and forced me to get to know the location of pretty much every public toilet in the local area. Now, having been upgraded to ‘Bridget Jones’ knickers or ‘magic pants’, I couldn’t be happier.

While I wouldn’t wish for anyone to have to be held together by three strips of Velcro, I have to say, body corset and I did become friends. It made coughing doable, laughing bearable, sleeping manageable and moving around, a lot more enjoyable. It is also the reason (along with tummy tuck surgery) that I now have the flattest stomach ever! I am sure it won’t last long, but, while it’s there, I am going to celebrate it. Thank you body corset. We’ve had some good times. You do look a bit tatty now and I am sure I will forget what it felt like to live with you attached to me. But, you did well, and you’ll remain a fond memory, tucked away in the ‘experiences’ vault forevermore.

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It may have done its time, but the body corset’s days are not yet numbered. First, it will be making an appearance at my first few pilates classes over the coming weeks, to ease me back into the exercises. A nurse also recommended I hang on to it so that should we ever be able to have children, it would encourage my tummy to go back to normal post ‘push’!

Writer Aldous Huxley once said: ‘experience is not what happens to you; it’s what you do with what happens to you.’ I think he was right. Whether you are undergoing treatment right now, are years on from treatment or facing challenges in another area of your life, I want to leave you with a thought. Whatever pain or sadness you are feeling right now, just know that it will fade and you have the power to forget. Don’t cling on, just let your body do what it does best. It will get you through it – and out the other side.

Let your experiences make you stronger, but don’t ever let them hold you back.

NB: As a quick aside, if you’re wondering how the post-chemo days are going, I’m doing pretty well. A few steroids highs are helping me stay positive and I’M STILL SMILING! A nurse called me yesterday to check on me and did warn me I may crash after the course of steroids ends, but while I am up, I am going to embrace it.

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 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 fifteen: Everyone needs a hospital survival guide

On By Jackie ScullyIn Breast reconstruction surgery3 Comments

As I lie here waiting to be helped into my tracksuit bottoms and discharged from the ward, I thought it would be a good time to see whether the ‘I-wish-I’d-known-that-before-I-went-in’ checklist would be extensive. You know what? It’s pretty short and mostly focused on things to think about – not items to buy.

In care terms, hospitals are the easy bit (someone washes you and even remembers when you need to take your pills). In psychological terms, they can be a trial, as patients battle with the comforts of being looked after and the often uphill struggle of getting through the day without pain.

So, here are seven little insights to keep you positive and make sure you don’t overstay your welcome:

Doctors and nurses know best: a hospital stay after major surgery is a strange experience. Within 24 hours of being sliced up, put back together and monitored closely, talks turns to getting you up and out of there. On the surface this may seem a bit mean (the NHS’s attempt to turn beds around quickly at the expense of a bit of after care). But, you know what, if you’re out of hospital, you’re further down the road to recovery, and that’s what anyone caring for you should want the most. I remember being told to get up on Sunday and thinking that it would be impossible to try. You know what? I immediately felt more human. I remember being told to start doing everything myself on Tuesday. I had a little cry thinking no one cared, but once I have washed my own face and managed a solo toilet trip, I felt more in charge of my recovery. It gave me the confidence to leap up the stairs and both the nurses and the physios thought I was amazing. That felt better than any amount of stroking and sympathy, I can tell you. Anything for a little gold star for being a good patient.

If you are uncomfortable, just ask: I have spent the last few days (with the exception of Saturday) trying to stay out of trouble (there were a lot of tears on Saturday). I asked for morphine only when in tears and I made do with everything in an attempt to be easy. Two things would have made life a lot better. More pain medication to relax me and a soft and static bed. I have just had a great night of sleep, because I listened to my body and made a simple request.

Don’t forget yourself in hospital: how easy it is to think that every swelling, shooting pain and a new ache is a life-threatening side effect. How easy is it to think that life is only as big as the four walls of the ward and a bed in the corner. The trouble is, if you fight to get back to who you are from the start, the chances are, your body will respond positively. The guy in the recovery room described me as a perfect patient, not because I didn’t ask for help, wasn’t in pain or didn’t say random things about my hand leaking. It was because I responded to everything, I was patient even when the morphine wasn’t working and I treated each person caring for me as a human being. I even found some time for humour, at which point the nurse said: ‘I can’t believe you’ve actually just general anaesthetic, let alone major surgery’. Where there is humour, there is happiness.

Do what it takes to have a good night sleep: hospitals never sleep, so don’t expect to. The bright lights in hospital make you feel like you are lying in a sports centre. Add in a few loud and random noises (the medication trolley, the blood pressure monitor, a bed brought in from surgery) and it’s hard to imagine ever being able to get to sleep. There are times when you won’t want to sleep at all (I got very anxious when I was on a combination of heavy drugs and thought I would stop breathing if I went to sleep), but when you feel like you can, you have to do everything in your power to try. I have had my first good night sleep in two weeks and I feel a lot more like me. Ear plugs and eye masks are a great idea (the hospital provided me with some, so just ask).

Thin clothes are the answer: it may be February, but the hospital feels like a Hawaiian Island (that could be due to the morphine). If your clothes are cotton and thin, you are more likely to feel comfortable and relaxed. I had a few nightshirts, a couple of bras and three pairs of big knickers and that was enough. The Royce post-surgery bra is amazing (so soft and comforting). I will probably be living in this and my abdo binder for months.

Keep strong in your mind: there are people there to treat your symptoms and take away your pain. There was no one there when I was left to look at myself in the mirror yesterday and see the results of the surgery. I cried and then I remembered why I am doing this. I drew on my inner strength and I got through. No one knows the real you when you are wheeled onto that ward and they can only respond to the person you decide to be in hospital. Be strong and they will be strong too (you might even get extra biscuits).

Order mash with most meals: just try it for me! It’s pretty special.

So, if you are about to be admitted, or find yourself in one of these caring institutions in the future, try and be the best patient you can be. You will be rewarded in so many ways – the ultimate prize being a discharge note and a bag of pills!

Breast cancer lesson number fourteen: Prepare yourself for the big reveal… It hurts

On By Jackie ScullyIn Breast reconstruction surgery3 Comments

Today marks the start of my return to independence. I have already wiggled my slippers on, waddled slowly to the toilet without a supportive arm and managed to wash my face. My moving mattress is now just foam, so there won’t be any more late night parties. I have also conquered the stairs without my wound feeling like it’s ripping apart. That means I am pretty much ready to go home.

Today has been an unexpectedly big day. Not because I can now pull my big knickers on. Not because I am getting my third drain taken out (leaving me with just one to take home with me tomorrow). No, today was the day I saw myself in the mirror for the first time. And, the worst bit is, I wasn’t prepared.

Looking down certainly doesn’t prepare you for looking in the mirror. I had accepted the challenge of washing myself independently and, before I knew it, I was sitting facing the scars and trying to make friends with my new flap. I had believed the nurses and doctors when they said it looked amazing (and it does in medical terms). It’s just that a scar from hip to hip, a new belly button, a large swollen lump in place of a cancerous boob (with no nipple) and a very swollen arm from the lymph node removal is quite a lot to take in. I may be healthier right now and I should be rejoicing about that, but I just feel a bit like an alien. Until I love these new body parts, how can I expect any one else to love me?

There is a small blessing in all of this. I have never been a woman defined by my looks. I’ve had spots, I’ve been overweight many times, my style is what could only be described as timeless (because it pretty much never changes, not because it’s stylish) and my walk is unique to say the least. I grew up being teased for the way I look and walk and I am strong enough now to know that it’s not a bit of body tissue that makes you who you are. It’s the person you are beyond the scars that matters.

A lovely nurse said something beautiful to me yesterday. She said: ‘disease makes us beautiful’. By this, she didn’t mean there are a queue of people dying to get stitches and surgical bruising. What she meant was, every obstacle we face reminds us of the important things in life and gives us the space to work out who we really are and what we really want. Each scar is a reminder that life is hard, but every time you recover, you learn to see more beauty in both yourself and others. We can be beautiful in other people’s eyes because we can see the pain others can’t and we can be the shoulder or support when others’ backs are turned. Put it this way, if beauty were defined by the amount of hurdles we face in life, I’d be Kate Moss.

While I will never be beautiful, I hope that my scars (once I have learned to love them), will give me the strength to support others and help them find the beauty within.

So tomorrow is the beginning of the real post-surgery recovery at home. There is only one thing I will miss from this first stage other than the beautifully smooth mashed potato – and that’s the view. London, with its bright lights, busy streets and Big Ben alarm clock – is pretty good company when you can’t sleep (and I’ve had what feels like about three hours in total in hospital). Walking by the river on operation day felt like a different kind of London. Away for the usual crowds and commuters, it was preparing for the day, with workers sweeping up, switching on and keeping the city’s heart beating. Looking out over the water at night, it feels like another world driven by bus timetables and lone wanderers, not blood pressure machines and drain bottles. It may be the city that never sleeps, but in the early hours even the centre can feel like the quietest place on earth.

There’s only one thing I have to do now before they let me go tomorrow – and that’s have a poo. Easier said than done…