Breast cancer lesson number 117: Turn your scars into stars

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 72: Set your boobs free!

Nine weeks ago today I was on the slab being separated from my cancer. Nine weeks on and I have been celebrating in a small, but meaningful way. Firstly (and not really related but worth a mention) by not vomiting for 24 hours straight thanks to the anti-nausea medication. And, secondly, by sleeping without my post-surgery bra for the first time.

Going ‘au naturel’ or braless in bed is another of those cancer milestones that doesn’t often get a look in, surrounded as it is chemo sickness stories and hairless updates. But, as a step towards the new ‘post-active-treatment’ normal to which I am heading, it feels like another great big tick on the cancer checklist.

My post-surgery bra and I have had some good times together. It may have aged me in the bra department by a good 30 years, but with its healing fibres and its soft fabric, it has been a loyal friend. So much so, that I could have stopped wearing it in bed a few weeks back, but chose to extend our relationship just that little bit longer. I have purposely chosen not to post it here so as not to scare off the male followers among you.

Before you question my hygiene levels, I did have two identical post-surgery bras (best to go up a back size when choosing just to give you added comfort around the swelling). I am delighted to report that they are now both in a drawer, replaced with a new non-wired bra for the daytime (another mini milestone). A good three months without wire is the recommendation and then I get to take a call on whether to return back to the underwired bras of my pre-cancer life, or opt for a lifetime of comfort. As someone who only wears heels on special occasions (and is known to walk like I’m drunk before I’ve had a drop when I do due to my rather special hips) it might be comfort all the way from now on. Last thing I want is a bit of wire digging into my new fat-filled boobie.

It will be a while before I get a nipple and any final nips and tucks. I will have a fleshy mound for a good six months post radiotherapy, so the tissue and skin have time to settle down. I should be seeing my surgeon again in a few months, however, to discuss these little reconstruction extras and, most importantly, get me added to the waiting list for day surgery next year. When your life is no longer dependent on surgery, the NHS waiting list system comes back into play. I wonder just how many nipple-less woman are currently waiting their turn for a manipulated bit of skin and a pinky tattoo?

So, to all reconstruction ladies out there I say, love your post-surgery bra (and pick wisely – I highly recommend my Royce one), but also love the day it comes off. It means you’re one step further away from the ‘patient’ label and one step closer to those post-cancer comforts.

As a side point, if anyone knows of any beautiful and comfortable non-wired bras, please do get in touch. They seem a little hard to find. 

Breast cancer lesson number 55: Celebrate your independence day!

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

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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 48: Short-term pain, long-term gain

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Meet PICC. He’s my new best friend for the next four months (sorry body corset, but you’re history as tummy is pretty much sorted). Otherwise known as a peripherally inserted central catheter, he’s my ticket to the pain-free (and finding-a-vein free) administration of chemo drugs and collection of bloods. He’s not much to look at, but he’s better than a needle (or eight) and that’s all that matters.

There’s nothing like getting 42cm of flexible tubing inserted into your arm to make you feel like a real patient. One more consent form and another plastic wristband down and I was lying on a bed staring at an ultrasound machine, a syringe full of local anaesthetic and a lot of wipes and tubes. The good news? I didn’t have to wear a gown!

It started well. The nurse found a vein with the ultrasound while I was quizzing the nearby student nurse about all the operations she’d observed. (She was quite forthcoming about the details, including the time she watched a surgeon connect blood vessels from a tummy to a chest as part of DIEP surgery. It was fascinating and certainly a strange distraction from the procedure). The local anaesthetic went in well and then the tubing started to enter my arm. I heard the word ‘kink’, then a pause, then a ‘could you bleep the other nurse?’ and a ‘I’m sorry it’s got to come out’. She had done so well and got so far, but when the pressure turned to pain (it’s not supposed to hurt) we both knew it was time to abort. Another vein thrown on the vein scrapheap!

Round two was a complete success. Vein located, anaesthetic in, and 45cm of tubing later and I was off for a chest x-ray. I say 45cm, because the x-ray (an interesting experience in its own right and another x-ray first ticked off the list) highlighted that the tubing was in about 3cm too far. So, I was back to the Cancer Day Unit to get it pulled out a little bit. The tip of the PICC line sits in the big vein just outside the heart, while at the other end, there is about 4cm sticking out of my arm. Don’t worry, for those of you concerned about whether it will come out, the line is held in place by something called a ‘statlock’ and a transparent breathable dressing. Golf and tennis are now on the ‘temporarily banned’ list (along with swimming due to chemo), but I should be able to use it as normal once the initial tenderness has subsided. For those of you who’ve been unlucky enough to see my golf swing, you’ll know this is no great loss. The Olympic Park swimming trip on my Brighter Life list, will just have to wait.

Tucked away neatly under a piece of tubing, it wasn’t until I reached for my cardigan that I stumbled across challenge number one. At the moment, bad arm is right arm, so bad arm goes in to the sleeve first. But what happens when you have two sensitive arms? Let’s just say, it was a pretty good comedy sketch and, after a quick wrestle, I managed the cardie. The coat is a challenge for another day!

One other thing I didn’t consider in this battle against bad veins was that, like all good cannula-like devices, it needs looking after. That means weekly dressing changes and line flushing. More nurses, but thankfully no more needles! That’s a price worth paying. 

Today I have learned a good few things. One, the Cancer Day Unit is lovely (more on that tomorrow). Two, my right arm is now straight enough to pass arm testing for the clinical trial. (It took six attempts and the nurse and I were laughing by the end, but we got there.) Three, PICC line insertion is an interesting procedure (as is a chest x-ray) and really isn’t that uncomfortable if you’re considering getting one. Four, details of the acute oncology assessment unit must now travel with me everywhere. And, five, my blog URL is (amusingly) blocked by the hospital WIFI (probably deemed as dubious, but given the amount of boobs currently on show in most hospitals, I find it so funny. Mine just includes the word). The hospital does do a good egg sandwich though, so I’ll let them off.

I’ve seen the unit. I’ve seen the chemo chair (looks quite comfy). I’ve seen the suite and I’ve got the line. There’s only one thing missing. Those cell-destroying drugs. Just two sleeps left.

First, I have to work out how to have a shower without getting the PICC wet and then I need to look at just how many more clothes are now off limits due to my new arm accessory. Just when I thought I was getting my wardrobe back.

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

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!