Tag: cancer blog

Breast cancer lesson number 31: What you lose in dignity you gain in confidence

On By Jackie ScullyIn Happiness, Reflections on cancer1 Comment

I lost my dignity somewhere between getting drawn on by a surgeon with a giant marker pen (in front of another surgeon and my parents) and having an unexpected internal scan at my first fertility appointment. That’s not to say that my amazing hospital doesn’t go to great lengths to protect it with their well-placed gowns and paper towels. But, when you’re picking out your clothes based on what gives people ‘easy access’ you know it’s pretty much gone – and the chances of recovering it are very slim (I appreciate that may make me sound a little bit like a loose woman. But, trust me, it’s all in a good cause!)

Surprising as it may be to hear, I don’t want it back. In its place, the hospital has inadvertently given me something so much more important: a massive dose of body confidence. That’s not to say that I have a burning desire to take my top off or wear more revealing clothes (I don’t think the world would ever be ready for that). But, by encouraging me to undress at pretty much every appointment (sometimes just out of pure curiosity and kindness), I have realised for the first time that I’m happy with my lot.

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It may sound strange coming from someone with a large scar down her hip (and four giant metal pins inside), a scar on her neck from a old birthmark, a walk that looks like it belongs on the comedy circuit, an amputated boob (and a new imitation one without a nipple currently), straw-like hair, a scar the length of my tummy and so-called ‘child-bearing’ hips. But, every time I look in the mirror now as I massage my modifications and wash my hair, I don’t see my flaws. I just see strength.

I know I’ll never be stopped in the street or take someone’s breathe away with just one look. I know that I’ll never be able to wear short skirts and look good in a pair of shorts. I also know that when fully clothed I am just another plain Jane on a commuter train. But, what makes me smile is that, beneath the pink cardigans and the navy dresses, I am a warrior. And, if you asked me to choose, I wouldn’t change a thing (beyond getting a serious illness in the first place of course). After all, if the world wanted us all to be beautiful, it wouldn’t have invented mascara! And, I love mascara!

Beauty isn’t about having good skin, it’s about being comfortable with what you have and accepting who you are. You’ll find there’s a cream for everything else.

So, I challenge you to stand in front of the mirror this weekend and smile. Smile at the good bits (I am positive you all have something about which you are particularly proud. For me, I have always liked my eyes and my shoulders). Then, most importantly, smile at the bits that make you who you are (the childhood scar you’d wouldn’t have had if you’d listened to your parents, the finger nail that just doesn’t grow the way you want, the knee that hurts, the big toe that you always bury in thick socks).

Smile because you’re you. I wouldn’t have you any other way!

NB: if you’d like to find out more about scarring and breast reconstruction (with DIEP), head to lesson number 21.

Breast cancer lesson number 29: If someone gives you the chance to freeze some embryos, grab it with both hands

On By Jackie ScullyIn FertilityLeave a comment

Being a mother has always been part of the life plan (although so too was being married at 28, so I’ll admit it is a pretty rubbish plan)­. Surely you don’t give someone a passion for cooking, baking (and eating), knitting, sewing and playing and then take away the person (or people) most likely to benefit from it all ­– and love you unconditionally even though you have a tendency to throw icing sugar round the kitchen.

The trouble with life, however, is that things very rarely go to plan. In fact, I would go so far as to say that the more I plan (outside of a work context), the more life likes to throw me off course. For a person who finds comfort in to-do list making, itinerary planning and copious note taking, sometimes I just wish life would see it my way and stick to the schedule! We would both be better off.

If you’d told me last Christmas that I might be infertile by the time I pull my next festive cracker, I probably wouldn’t have believed you. In fact, it was only yesterday, when I was sitting on the train with a cold bag of fertility drugs (free cold bag on the NHS can’t be bad) that I started thinking about the possibility of life without a bump (this time a giant one that I would actively want to feel).

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To be honest, on most visits, I feel a bit of a fraud in the assisted conception unit, sitting next to couples who have tried so hard to conceive naturally. For some people, this is their world. For me, it’s something we’re squeezing in between having a boob taken off and chemo. When you’re on the rollercoaster all you can think about is hanging on (and not falling off). It’s only when you’re standing on solid ground again does the reality of what you’ve just experienced set in. Cancer is certainly a pretty unforgiving rollercoaster (certainly wouldn’t pass health and safety) – and I can guarantee you won’t see people queuing up for a piece of the action.

Yesterday, however, I didn’t feel like a fraud. Life has already had one go at my femininity and I would never forgive myself if chemotherapy stopped my ovaries from functioning before I’d had chance to give them a good workout. Sat in the waiting room (a rather plush waiting room with bespoke artworks and a plasma screen playing to itself in the corner) armed with my cold bag, I was just another woman trying her hardest to cling on to the hope of starting a family.

Of course, unlike a lot of women in the waiting room, my body is currently a textbook baby-making machine (so much so that I have to have lots of blood tests as I am in danger of hyper-stimulation). I am happy to report, however, that even with the world’s most pathetic period, I have started my course of Menopur and am one step closer to my next general anaesthetic. It’s Menopur at a certain dosage until a Sunday morning blood test, then I add in Cetrotide (and Ovitrelle gets a look in at some point). Meanwhile, I am also pumping my body with the anti-cancer drug Letrozole in an attempt to keep my oestrogen levels safe. So far, the scrap inside my body is a silent one – and long may that continue.

For those of you considering IVF or thinking about fertility preservation, please don’t worry about the injections. I was delighted to see the teeny weeny needle pop out of the packet and, once the nurse had walked me through the drug mixing and skin squeezing drill, I was all set. As long as you alternate injection sites, follow the pack instructions, tap the syringe to get rid of the air and don’t inject through tights, you’ll be fine (she says, I actually start injecting it myself tonight).

Should I come through chemotherapy with my fertility in tact (apparently a group called the ‘alkylating agents’ are the drugs commonly linked with infertility), the next fertility-related hurdle is Tamoxifen. This hormone treatment (which women tend to take for a minimum of five years) is used in oestrogen receptor positive cancers. You are advised not to get pregnant while taking the drug, even though it can actually make you more fertile. If there’s no sign of the menopause when I complete the course, then there might just be a window of opportunity still ajar that we can squeeze through.

Beyond setting injection reminders (my Menopur injections need to be taken in the evening) and taking my anti-cancer drugs, this is one plan I don’t control. And, you know what, that’s fine by me. I think now is the time to stop writing lists and start making things happen. After all, I need to store up all my planning energy to organise a wedding – something for which a list and a spreadsheet or two would be hugely beneficial. Life surely wouldn’t disagree with that!

Breast cancer lesson number 28: Don’t forget your toothbrush… or the dentist

On By Jackie ScullyIn Chemotherapy1 Comment

There’s one thing I fear more than giant needles, mean cancer-fighting drugs and surgeons with sharp scalpels ­– and that’s the dentist. Don’t ask me why. I have never had invasive procedures, don’t have a clue what real toothache feels like and I have been blessed with lovely dentists (my childhood dentist even had a photo of the town on his ceiling to keep us patients entertained). I know it’s irrational. I know it sounds truly bonkers when I seem to be smiling in the face of everything else. But, there is something about the prospect of sitting in a dentist’s chair that makes me feel a little bit sick! Maybe it’s the fact that when someone has their hand in your mouth, no one can hear you scream.

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I have to admit, however, that following today’s early-morning appointment, I may have to reconsider my view of the dentist. I still hate the chair (more so today because I had to raise my knees to stop it pulling on my tummy ) and the fact every time I go to swallow I fear the dentist’s tools will end up in my cheek! But, I have now discovered a word that makes dentists roll up their sleeves and forget the flossing lecture. The word? CHEMO!

I felt sorry for my dentist this morning. No one wants an 8.30am patient with more problems than can fit on a medical history form (they should make the boxes just a little bit bigger though. Am not sure having room just to put the words ‘breast cancer’ is enough). A few minutes racing through new boobs, fertility, chemo and radio and my check-up turned from a quick blast of dentist speak: ‘one, two, upper part erupted etc’ into a 20-minute ‘let’s-fill-and-seal-what-we-can-to-stop-the-chemo-getting-your-teeth’ session. I reckon my teeth are now so well reinforced, I could make a stick of rock feel like a stick of celery.

I would never have summoned up the courage to go to the dentist two weeks after the introduction of new boobie, had it not already been penned in the diary (I don’t like crossing things out). But, having had such a pleasant and supportive experience, I’m already booked in to go back in June (with the hygienist in a few weeks time).

Humbled again by the kindness of strangers, it’s amazing just how many people there are willing you on and arming you with the tools to stay strong.

Read booklets about chemo (which my breast care nurse did warn me is like reading the list of side effects in a packet of paracetamol) and they talk about the possibility of getting a sore mouth, dry mouth, ulcers, tooth decay, infection, bleeding gums, oral thrush and taste changes! Nice. They also advise people to use a soft toothbrush, brush after every meal, use an alcohol-free mouthwash (which Listerine in photo isn’t by the way), avoid spicy and acidic food (if mouth sore), take regular sips of water and chew sugar-free gum.

Hopefully, with a combination of toothpaste treats and dental checks, I’ll get through this next phase with happy – if not pearly white – teeth.

So, today is the day I say goodbye to ‘the fear’ and hello to mouthwash! My teeth are ready for battle – now I just need to work out what else needs a bit of reinforcement!

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

On By Jackie ScullyIn Breast reconstruction surgeryLeave a comment

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

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

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

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

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

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

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

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

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

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

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

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

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

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