Category: Reflections on cancer

Breast cancer lesson number 24: Not all upgrades are worth having!

On By Jackie ScullyIn Reflections on cancer2 Comments

I have only ever been upgraded once before in my life. Duncan and I were on a holiday in Cyprus and, having opted for a really tiny hire care, we were upgraded to something a little bit better. As the designated driver, I was visibly thrilled at the news. Duncan was laughing. I didn’t know why until I saw the car – or maybe juggernaut with a giant boot would be a better description. Having driven nothing larger than a Nissan Micra (I am pretty fond of my small car), it took me days to get used to it. As anyone who has been up the Troodos Mountains will know, big cars and little windy roads with sheer drops are not a match made in heaven.

Today, at my pathology report meeting, I received the results of the testing done on the cancerous mass – or should I say masses. This meeting is one of the most important meetings in the whole process because it’s the first time they’ve tested everything and it’s the first time they know for certain what really went on behind naughty right boobie!

With the results, came the second upgrade of my life (why can’t I just be upgraded to first class on a plane like normal people!?). The tumour they found was larger than anticipated; there were other masses (making it multi-focal cancer); and while there were only two lymph nodes affected out of a possible 13 (the number of lymph nodes present in a body varies from person to person), the cancer in one of the lymph nodes had spread into the surrounding tissue. This means I have stage 3 cancer, which is sometimes referred to as locally advanced breast cancer. Stage 4 cancer is secondary cancer and it doesn’t even get a mention in some cancer leaflets.

Ok, so you’re probably thinking that there’s no way Jackie will be able to get a positive post out of these findings. But, I am delighted to say I can and I have! The reason being is that I AM CANCER FREE. Yep, you heard that right. THE CANCER HAS LEFT THE BUILDING – AND THE BODY!!! Yes, it’s not the best news in the world (although the surgeon did say it was better than they thought it would be). Yes, it means I will have to have chemotherapy, radiotherapy and a course of hormone therapy. But, I can now say I HAD STAGE 3 INVASIVE LOBULAR BREAST CANCER AND NOW IT’S GONE.

Today has been a good day. The surgeon and the breast care nurse were surprised to see me looking so well – and bolt upright. The surgeon had a quick peek of the new improved me and looked very impressed with the results (it’s nice to get nods of approval when you take your top off). I met the surgeon who saved my life and got the chance to ‘thank him for working his magic’, and I am no longer waiting to hear what the next six months are going to look like. My cancer surgeon doesn’t want to see me again for a whole YEAR (woohoo) and there was an incredible amount of smiling and laughing. Anyone would have thought we were having a celebration rather than discussing the fact the cancer was trying its hardest to take me away.

Thank god for amazing surgeons and for Christmas Eve 2013. My engagement may have been the best Christmas present ever, but finding this lump on Christmas Eve has got to be up there. While no one can tell me what the future holds and whether or not it will come back, the fact is, right now, I’m lucky to be alive – a fact that’s only just starting to sink in!

Breast cancer lesson number 22: Meet Agatha, she’s rooting for you!

On By Jackie ScullyIn Reflections on cancer5 Comments

The phrase ‘you learn something new every day’ could have been invented just for those coming to terms with a cancer diagnosis. It was only three months ago that I thought breast cancer was just one cancer – not an umbrella term linking together a series of complex stages and elements. I had never even thought about a lymph node and its role in supporting my body. And, most importantly, I didn’t know Interflora did the most amazing ‘first aid’ biscuits (in the shape of thermometers, safety pins and scissors). Thanks auntie Joanne!

Not all discoveries are medical ones. Having been tucked away at home for more than a week now, it is easy to block out the stages, the machines, the drugs and the treatment plan. In fact, the most interesting thing I have discovered this week (with the help of a beautiful friend) is that Breast Cancer has its very own saint – and her name is Agatha!

Image

Now, Agatha was pretty tough (you certainly wouldn’t want to meet her down a dark alley). After being arrested for rejecting the affections of a man named Quintian (good name), she was subjected to a series of punishments. She was sent to a brothel to be corrupted. She did not waiver. She had her breasts cut off (thankfully there have been advances in medical science since then), but Saint Peter swooped in and miraculously restored them (that certainly doesn’t sound like it involved her tummy fat). Sadly, in the end, not even Agatha could survive the torment of being rolled over burning coals. As a saint rooting for those facing the challenge of breast cancer on a daily basis, however, she seems pretty inspirational.

I may have missed her feast day (5 February), but this is my quick shout out to Agatha. May the little charm I have popped in my purse give me the strength to smile in the face of uncertainty and pain. She may not be able to make our boobs grow back, but let her story of survival be one that inspires all breast cancer sufferers to fight, especially when they feel they have nothing left to give.  

Breast cancer lesson number 21: Scars are tattoos with better stories

On By Jackie ScullyIn Breast reconstruction surgery, Reflections on cancer1 Comment

I am proud of all of the scars life has chosen to give me (maybe not the one from burning my arm on the cooker while trying to make victoria sponge – that just hurt).

Scars tell stories. Scars signal strength. Scars remind us that life is hard, but that every time we hit a difficulty, we have the power to recover and that the memories do fade. Every scar I have makes me who I am – and I wouldn’t have it any other way.

Image

When I came out of my hip surgery with a drain mark, a seven-inch scar and 44 holes, I thought I was pretty hard. Looking down at each mark today, I think of the moment I learned to walk again (in my parents’ kitchen), the moment I took my first post-op cycle ride and the moment I stepped back into high heels (still look a bit tipsy in anything over a centimetre so this is still a rare occurrence). Little did I know that just over six years later, there would be a few more impressive scars fighting for the top spot as a marker of life’s challenges.

With my wound care appointment and my first trip back to hospital since surgery fast approaching, I thought I’d take a moment to assess the scars that are now covering my body (don’t worry, there won’t be any photographic evidence).

1)    The tummy tuck: appropriately I think, the big tummy tuck scar is a 38cm whopper in the shape of a smile. It is glued together (open for the eyes to enjoy) and is covered in a thin sticky mesh tape, which keeps it protected and attracts every bit of fluff possible. When I look at it I smile at how flat my tummy is and how many people contributed to the chocolate fund to enable me to have the surgery. I am very lucky. I believe it will look angry for 12 to 18 months and will then be neatly tucked away under my bikini line. Nice!

2)    The drain holes: two in the abdomen and two down the right side (with a few pinholes where the stitches were). Blink and you’ll miss them! When I do locate them I think, they were painless tubes attached to sports bottles and they did a good job. Thanks drains!

3)    The belly button: Now moved to its new position (quite what they did I will never know – cut it out and dig a hole to reposition it?) it is surrounded in stitches that look like threads of cotton. I think I get a trim tomorrow when I go in! When I look at it, I laugh at the fact they went to such lengths to keep it in a normal position. They think of everything.

4)    The boob: imagine a milky mound with a saucepan-shaped scar on it. Basically, the boob skin is still the same, except for a circle where they took off the nipple (the nipple area is now a flap of skin from my missing tummy – complete with light tummy hairs). There is a line extending out from the circular scar, moving towards to the right armpit. This incision helped them reach and extract all my lymph nodes, saving me from a further scar under my arm. Currently covered in little steri-strips, I am still waiting for the big big reveal. When I think of my mound, I don’t think of what I had, I think of what I have: my life. I am grateful to those surgeons who are both trained to take the cancer away and create something that means I won’t be afraid to look in the mirror for the rest of my life. Take that cancer!

In short, it’s less Frankenstein’s monster and more a new improved me.

I read a beautiful quote earlier: ‘Scars remind you where you’ve been. But they don’t have to dictate where you’re going.’ I’d like to amend it slightly: ‘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.’

So make today a day to be proud of all your scars. And, if you don’t have any, start living! 

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.

Image

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!

Image

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 seventeen: The body is an amazing – and unpredictable – thing

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

One week on from chop-me-up-and-get-the-cancer-out day and I am delighted to report that (touching all wood around me), I seem to be free from any early complications.

On the tummy side, I’m still pretty sore, coughing is savage and laughing just cruel, but my magic corset is helping me get around. On the boobie side, there’s still numbness, some hard tissue (that’s not had enough blood) and swelling (wouldn’t mind if that stayed actually) and it’s a nice shade of yellow, but it’s alive and that’s all that matters. And on the arm side, with the exception of some nasty pins and needles in my hand and swelling under the armpit (that means I can’t use it properly), it’s coming back to life. Healing takes a long time, but for week one, I’m feeling good.

There is one tale of the unexpected, however, that I have not yet shared – and it was enough to contribute to my recent broken sleep (if you’ve read lesson four, you’ll understand the significance of this). After working hard to ‘switch everything off’ for surgery so that I could start fertility treatment in a few weeks time, imagine my surprise (and that of the nurses) when, on day one, I ‘came on’.

I realise this subject is enough to turn most male stomachs, but this wasn’t any ordinary monthly cycle or episode of PMT. It was the cycle I wasn’t supposed to have, so I could give myself a window to preserve my fertility and freeze some embryos before chemo. Its arrival brought with it two fears: 1) I had lost that window and would have to start chemo with the realisation it may take away my fertility for good or 2) I would have to start self-injecting with hormones now and taking anti-cancer drugs to try a give myself the time to stimulate those ovaries. Sadly, when the nurses called the fertility clinic to explain my dilemma, it became clear option two just wouldn’t be possible so soon major surgery.

The good news – and the reason I have held off sharing this until now – is that the cycle disappeared nearly as quickly as it arrived. When the body is subjected to trauma it starts doing funny things. This was just its way of being funny. Thanks body, not funny! On Wednesday, I was given the green light to keep taking the pills, so that fertility treatment can start once the scars have started to heal properly. So, we’re back on track.

There was, however, a bit of amusement attached to this mini drama (again sorry male friends, this could be considered over-sharing). When I made the discovery, I needed pads fast. It was at this point that I was presented with NHS equivalents (imagine full on adult nappy or pad the length of an oven glove). It may not have been shocking enough to stop my period in its tracks, but it certainly prompted me to ask my two unsuspecting male visitors (sorry guys) to sort me out – and fast!

So, if your body starts playing up and having a bit of fun, do not despair. It’s just its way of saying: ‘Hang on a second, did I consent to this rather brutal attack? I have feelings too.’ Let’s just hope it plays ball when I come of the pills at the end of next week, otherwise there’ll be strong words! 

Breast cancer lesson number eight: Fashion has its place, just not in the hospital

On By Jackie ScullyIn Brighter Life List, Diagnosis and treatment planning, Reflections on cancer1 Comment

Dress with confidence and you will feel good. It’s a lesson I learned with my hip surgery, having spent months in black joggers and oversized jumpers. I didn’t want to look in the mirror, not because I didn’t like myself, but because the picture never changed. Not this time!

When I started this process, I promised myself I would do everything in my power to stay true to myself. That means bright pink tops, navy dresses, pink belts and matching ballet pumps. For those of you who know me well, you’ll know I am not the least bit vain – I painted my toes for the first time ever last year and it took me years to realise that green cords and a long brown jumper are not going to get you anywhere in publishing! I only decided to match my shoes with my clothes in 2009 (maybe I have said too much)!

When it comes to fashion – by which I mean dressing up not being on trend – however, it seems cancer has other ideas. Take this morning, for example. I selected a pretty navy lace top (a birthday present from my parents) for a fertility clinic appointment, so convinced was I that I would remain fully clothed throughout. Twenty minutes in and I was wrestling to remove my top so that the nurse could take more blood. Trust me, bending over while trying to get a top over your head when you can’t reach the button at the back, is not a good look. I resembled a magician trying to escape from a straightjacket – a fact that didn’t go unnoticed by the nurse who thought my determination to get it off unaided was hilarious. I am glad to say the top survived – but it was a close call.

The sad thing is, it seems one wardrobe malfunction is but the tip of the iceberg. Then there are the knickers. Recommended post-op knickers for those who are having the rather glamorous tummy tuck (or DIEP flap to be scientific) are big. And, by big, I mean HUGE! Bridget Jones would be proud. I was hoping my artificially flat stomach would stay in on its own, without the extra support!

Only piece of good news is that I can’t wear them when the two drains sticking out my stomach are still in place.

Let’s not forget the bras! As I am opting for immediate reconstruction, I must confess, I didn’t think I’d need a special bra. How wrong was I! While I admire the care and science that goes into creating post-surgery bras for women, I have to say, my heart sank when I went to a department store on Oxford Street yesterday to pick up a couple. For starters, you need to go up a back size because of the swelling – and no woman wants to go up a size in anything other than cup size. Visiting a lingerie department for a post-surgery bra is like going to a sweet shop and coming out with an empty paper bag. You feel special for all the wrong reasons and you generally don’t get lace or ribbon or silky bits. They also don’t come in navy or pink, which, as explained above, is just not part of the Scully colour palette.

The lesson here is, don’t go to the high street – shop online. From the sofa, it is easier to admire the craft and healing fibres without feeling like you’re missing out.  You are even exempt from paying VAT, which is a bonus (just make sure you call customer services to claim back if the option to remove VAT is not available).  I also have brand recommendations if you’d like them, courtesy of my lovely breast reconstruction nurse.

One interesting discovery in this rather unfashionable episode, was that around 80% of women are wearing the wrong bra size. Having discovered this fact, I promptly dug out the tape measure (useful bra fitting guide link should you wish to follow suit). I have been a 34B for as long as I can remember (even though my dress and top sizes have altered). Thankfully, I passed the test and have saved myself from the shame of having to admit to hospital staff that I had over inflated my assets.

Image

I am pleased to report, however, it’s not all small boobs and big knickers. Determined as I am to feel myself in hospital (after the morphine has subsided), I have splashed out on lovely nightshirts (not my first choice in nightwear, but if you ever need a button down shirt for easy access, I have some good tips), a soft dressing gown and fluffy slippers. I now also have a rather stylish selection of zip-up sweatshirts, which I think will be getting a bit too much wear post-surgery.

Cancer, you can have my right breast, but you won’t take my style – what little I have of it. I plan to dress to impress, even if it’s only for the lovely ward staff!

Breast cancer lesson number six: If Dr Google really had the answers, we’d all be camping out at A&E on a regular basis

On By Jackie ScullyIn Breast reconstruction surgery, Chemotherapy, Diagnosis and treatment planning, Reflections on cancerLeave a comment

Dr Google should be struck off! Far from reassuring us with his wit and his wisdom, one session on the computer is enough to make us run a mile – preferably in the direction of a general anaesthetic! (Please note, I have nothing against Google the colourful brand and the usefulness of its search functionality, just the medical company it keeps.)

In the fight against cancer, however, it doesn’t take long to learn that knowledge is power. And I’m a big fan of power. I walked into the hospital on diagnosis day thinking about my latest publishing deadlines and whether or not I had enough chorizo left to make a risotto for dinner. I came out armed with a small forest worth of paperwork and the determination to read and understand every word.

As far as I am concerned, cancer is just another client – albeit a rather impatient and demanding one that doesn’t seem to like my scheduling! It has its very own notebook, to-do list and meetings calendar. It also has its own agenda – which currently doesn’t quite match mine!

Image 

So, having discharged myself from Dr Google’s rather unsteady hands, I took it upon myself to plough through more than 400 pages on the subject in just one day (it was a particularly fun day!) I am at last learning the language of breast cancer – and fertility for that matter. From lobules to lymph nodes and stages to systemic treatments, my brain is now a giant glossary of specialist terms that sound like they belong in a science fiction movie. I am also comfortable talking openly about boobs (hence the name of this blog), which has been a little alarming for the men in my life. 

Knowing that you feel well, but also knowing that there is something inside you trying to take your life away, is a hard thing to process. For the first few days after my diagnosis, I found it so hard to sleep. As irrational as it may sound, I thought that if I shut my eyes and let my body take charge, the cancer would take me. That’s why I quickly realised, it is so important to stick to what you know and what makes you feel like you are in control. For me, that’s hard work – and lots of it.

If you’re as interested as me about the little battle going on inside my angry right breast, here are the facts (as I currently know them). I must add here that two weeks does not a cancer surgeon make. I have a degree in English, not medicine, and this is my take on the information provided to me.

The Scully guide to Stage 2, invasive lobular carcinoma

1)   It wants to make friends: invasive (rather than ‘in situ’ or non-invasive cancer) means it has the ability to spread. It has already teamed up with the lymph nodes under my arm, so they’ve all got to come out on surgery day. I can assure you this is one invasion that won’t make the history books.

2)   It all started in the dairy: the lobular bit in the name means that cells started to divide and grow abnormally in my milk-producing glands or lobules (rather than my ducts – tubes that carry milk to the nipple). 

3)   It knows the score: whether you like it or not, your cancer gets a grade (and trust me, this is not the time to be top of the class!). The scoring system used grades the cancer (from 1 to 4) by looking at the size of the tumour, whether the lymph nodes are affected and whether there is any spread to other body parts. I have a tumour that is around 40mm (there are two other suspicious areas and I get the biopsy results tomorrow) and there is evidence of cancer in my lymph nodes. That puts me at stage 2. I’ll take that thanks.

4)   Oestrogen is keeping the cancer well fed: this is actually one of the hardest parts of the diagnosis to take in many ways. It feels like my own femininity is leading the charge. The only good thing is that there are more hormone drugs available to join my side of the battle.

There will always be more to learn but, for now, I think I know my enemy. Cancer, it’s time for you to be afraid, not me! 

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…

Breast cancer lesson number two: No matter how tough it gets, there is no excuse for criminal behaviour

On By Jackie ScullyIn Breast reconstruction surgery, Diagnosis and treatment planning, Reflections on cancer5 Comments

Ok, so ‘criminal behaviour’ might be a bit strong, but absentmindedly walking out of a Camden café without paying for a cup of tea before the MRI scan is not my usual style! (Having said that, being presented with tea in a cafetiere is enough to send anyone into shock!)

The MRI scan is not something I thought would ever make a blog post. While clever in determining the size and scope of the cancer (the ultrasound suggested it was an ill-defined highly suspicious mass measuring 28mm), strong magnetic fields and radio waves are not exactly the stuff of headline news. For anyone who has had one, lying still as you head into a long tube with earphones on is a pretty simple procedure – if you’re not me that is!

My history with the ‘simple’ procedure is chequered to say the least. This has nothing to do with my ability to lie still, but the injection part, where they put contrast dye into the body. I was kind enough to let a student practice on my hip back in 2006. This was a decision I immediately regretted when they injected the wrong part of my leg with the dye and I had to wait another three months for them to try again.

Convinced that lightning wouldn’t strike twice, I turned up after a client meeting (alone again, but will say nothing about my inability to learn from ‘lesson number one’) and was expecting to be in and out in no time. I was initially amused by the fact no one (not me, a GP, a consultant nor the radiographer) could work out the true ‘day one’ of my ‘cycle’ (and still can’t for that matter). I was also amused by the fact the man before me had the deepest combat trouser pockets I had ever seen and spent at least five minutes emptying them of coins and other bits of metal.

The amusement started to subside, however, when I was faced with my old friend Mr cannula! I have great veins, a high pain threshold and haven’t a clue what fainting feels like, so was still smiling when the first one went in – until it wouldn’t flush.

I was laughing and describing my engagement ring to the surrounding party of nurses when the second one went in. All looked good and I lay face down on the rather odd breast scanner bed (one nurse joked that you could tell it had been invented by a man as it looks more like a torture device than a bed).

I now know why they give you one of those buzzers to press in case of problems. As soon as the contrast dye went in, my left arm really started to hurt. I was soon pressing the ‘I want to get out of here’ button like it was going out of fashion. I was initially comforted for being brave until they realised they were filling my arm (rather than my veins) with the stuff.

I have always wanted to know what I’d look like with bodybuilder arms. Now I know – and it wasn’t pretty. Determined to see it through, however, we tried to get two more cannulas into me. On the fourth attempt in a vein on my wrist, it worked! Thanks have to go to the amazingly talented and patient nurses and radiographers who worked so hard to complete the procedure, even when my body didn’t want to play ball. 

There’s one form you certainly don’t want to see after an MRI: Patient advice in the event of extravasation. Sounds rather exciting, but it just means your arm is full of dye (and a bit larger than normal). I wish now I had taken a picture (photos will start soon when I am up to date). Let’s just say, it’s amazing how much work can be achieved with your arm in the air! Thankfully, my oversized bingo wing started to go down after a few hours of massage so no trip to A&E was required.

For those of you who are now worried that my moral compass is broken, do not despair. Having identified my crime in the hospital waiting room, I immediately texted my wonderful colleague Laura, who contacted the café. While I don’t think she will ever thank me for the conversation that followed (and the ridicule), she did confirm that the true cost of the tea was about 5p and the café could cope. Starting to think it would have been a bigger crime if I had paid, given the mark up!