Category: Diagnosis and treatment planning

Breast cancer lesson 165: Why loving the stars has made me less fearful of the night

On By Jackie ScullyIn Diagnosis and treatment planning, Moving forward, Reflections on cancer5 Comments

On 16 January, before the cloud of cancer cast its shadow on my life, I didn’t know a single person who was dying. Now, I could give you a list.

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Over the last ten months, while being chemically transformed into a cancer-repelling machine, I have lost new friends, new inspirations, acquaintances and amazing people with which I have shared a bit of Facebook banter. I got my life back, but, in so doing, I have seen just how easily it can be taken away.

For someone with a primary diagnosis, I haven’t really spent much time thinking about the prospect of this disease bringing my own life to an abrupt end (although I did have an amusing – if morbid – hypothetical chat with Duncan about the rigorous screening process I would implement if the end was in sight and finding another lady was on the agenda).

But, what I didn’t consider after being diagnosed was just how much time I would now spend thinking about other people who have lost their lives. Every time I hear that cancer has systematically destroyed another family’s world, I think about just how cruel and unforgiving this disease really is and just how many people are affected by it. At the moment it feels like my heart is being stamped on about once a fortnight, which is stark reminder of how fragile our lives really are.

Breast cancer is a killer. And, for young women, a pretty ruthless one at that. According to Cancer Research UK, 32% of all cancer deaths in women between 25-49 are due to breast cancer. I have heard people on more than one occasion say that breast cancer is: ‘the best cancer to get’. Truth is, the only good thing about cancer, is not getting it in the first place. Get it young and the chances of it being aggressive are high.

This post blog, however, is not meant to be sad. While I wish with all my heart the scientists could find a cure for cancer, some astonishing people have filled my thoughts, my house and my inbox this year. It’s awful that it was cancer that brought us together, but I couldn’t now imagine my life without the imprint they’ve made on it. There are some truly amazing people in this world. You may not always see them as you rush from day to day, trying to complete that to-do list. But they’re there and, I guarantee they’re fighting hard every day.

These women have taught me that if I’m not having fun, I’m doing something wrong. They have inspired me to greet each day with a smile. They have inspired me to race through my brighter life list (last week’s sausage roll making fest being my last achievement). They have inspired me to say what I mean to the people I love and admire, while they are still around to hear it. They have inspired me to be a better person in all that I say and do. And, for that, I will be forever grateful.

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So tonight, as you tuck into some wine or mug of cocoa, I want you to raise a glass to all those beautiful people who have touched your life and made you who you are even though they may no longer be a part of it. Life is so short and so precious too.

We owe it to all those whose lives have been taken, to make the very best of every day.

NB: If you are reading this and have not checked your boobs in the last month, they please ‘Cop a feel’. If not for me, then for this stunning woman Kris (Boob chief at CoppaFeel), who I feel humbled and privileged to have met

Breast cancer lesson number eleven: There may be leeches!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Breast cancer lesson number 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.

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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 seven: Cake is good for the soul and great for the boob!

On By Jackie ScullyIn Baking, Breast reconstruction surgery, Diagnosis and treatment planning5 Comments

Ok, so this isn’t an official medical recommendation. But, for someone who has a rather unhealthy obsession with hundreds and thousands and Green and Black’s vanilla white chocolate, it’s nice to know that the sweet stuff does have its uses!

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As you’ve probably guessed, I did pass the ‘fat’ test. But, in the words of my plastic surgeon, it is ‘tight’. That means, a week on Friday, I will be having a mastectomy (right boob off), axillary clearance (lymph nodes out) and immediate reconstruction (boob job) with, you guessed it, my tummy fat (a DIEP flap). I have always wanted to know what a flat stomach would look like. Now, for six weeks at least (post-op), I’ll know.

Today was an odd day to say the least. I did, however, learn two interesting things. Firstly, wear good knickers at all times because you never know when you are going to be asked to flash them. Secondly, don’t let anyone book your appointments the wrong way round – even if they say it won’t matter.

I started the day with the cancer surgeon, who revealed that the second biopsy confirmed the presence of even more cancer. At first he said: ‘I think it’s benign.’ Then he checked the notes and said: ‘ah, actually it’s more cancer.’ Interesting fact though, it doesn’t matter how many tumours you have in your boob, the treatment is based on attacking the largest one! So, no change then – just more cancer (nice).

The trouble is, because I hadn’t yet had the results of the ‘fat’ test, it was very hard to discuss the planned surgery. So, a completely hypothetical ‘what-happens-if-I-am-not-fat-enough-this-afternoon?’ discussion followed. One implant-measuring session and one consent form later and talk turned to surgery dates. ‘If we can’t use your fat, we can squeeze you in this week,’ the surgeon added. I am ashamed to admit, my immediate panic was more due to the fact I have conference calls, meetings, presentations and dinners planned for next week – not the fact I’d be starting to kick those cancer cells even earlier!

Thankfully, after spending lunch counting all the people that would be affected by this date change, I was relieved to discover that my commitment to cake eating had paid off. The most amusing part of all of this is that apparently tummy fat never forgets its origins. So, if I don’t cut back on the white chocolate and Cadbury’s Heroes after surgery, my right boob will make a rather ‘large’ statement. Almost worth trying just to see if it’s true.

Nothing if not obedient, I now have exactly 10 days to bake like Mary Berry before I am sentenced to six weeks of no exercise. I can’t even lift a supermarket shopping bag (he was quite specific, so that must mean other shopping is just fine). Every cloud… If only there was a way of bypassing the thighs and just channelling those calories into the abdomen.

One small aside before I finish. I have a first contender for Cancer Room 101 – people who moan in waiting rooms. There should be a big sign that says: ‘rejoice when there are long queues. It means the people caring for you are taking time to look after you and other people.’ Loud huffing and audible sighing is not cool. Next time, when you’re waiting and that clock is ticking, smile and say thank you for the dedication of the care team working tirelessly to fix you.

So let’s all raise a glass to flour, water, sugar and butter (preferably mixed and baked). It’s only taken a decade in the kitchen to realise just how important a mixing bowl and a wooden spoon are when your life is on the line! 

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!

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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 four: the time to have that awkward conversation is now!

On By Jackie ScullyIn Chemotherapy, Diagnosis and treatment planning, Fertility3 Comments

I love science. I still find it hard to understand exactly how planes stay in the air after take-off – and I have never really found a way of incorporating the periodic table into daily life – but, when it comes to the science of fertility, I am in awe.

The fertility question is an interesting one when you’ve been diagnosed with cancer. Talking about life after cancer, before you’ve even started the fight may seem strange. But, you know what, it wasn’t the possibility of dying that came into my mind when I first heard the news (the doctors have got that bit covered). It was the thought that the choice to have children may be taken away from us – before we even walk down the aisle. Having babies is all about the next chapter – after this rather unfortunate obstacle is but a distant memory. What is life about if it isn’t about hoping and dreaming – and making sure that next chapter is a chapter worth fighting for!

My advice to all women in the future who find themselves in this unenviable position is, just ask. After all, if you don’t ask… The last thing you want is to be sitting with a cannula in your arm being fed chemo drugs and knowing that those drugs might just be the ones to take your fertility away (and there’s no back-up plan). Having started my periods at the age of 10 (my primary school friends will remember me missing swimming lessons every two weeks for six months, which I put down to a strange-but-frequent illness), it would be a cruel twist of fate to have the hot flushes start at 32!

I promised my family that I wouldn’t do anything that would delay my treatment or risk my health. On surgery planning day (see lesson three), I explained (with a heavy heart) to the surgeon that I didn’t want to attend my assisted conception appointment if it meant that I would start out on a journey I wouldn’t be able to finish. At this point, the surgeon laughed and said: ‘Jackie, if you think we’re going to let you do anything that would risk your recovery, you’ve got another thing coming.’ That certainly told me who was boss!

The great news is, if you ask early on, and you are lucky enough to have time (I know this is unfortunately not an option for some women and other cancers), it can become just another part of your care pathway.

So, within days (thank you amazing NHS), I was sat next to anxious looking couples in the fertility clinic waiting to talk about freezing eggs and embryos (I’d already done plastic surgery and boob jobs in the same week, so why not?).

This is where the amazing science comes in. IVF involves exposing the body to high levels of oestrogen. The trouble is, my lovely lump quite likes oestrogen and is being fed by the stuff – the very thing my ovaries need. The solution? Pump my body with cancer drug Letrozole, which will try and protect the breast from the effects of oestrogen while stimulating the ovaries just enough to get those eggs going. In short, two weeks after surgery, two lots of drugs are going to have to have a scrap inside me! Let’s hope I don’t have to join in!

I came away from the fertility clinic truly humbled (and a little bit violated – but I won’t go there)! The biggest smile of my day, however, came from the pharmacist, who was confused as to why I was only being prescribed a small number of Letrozole pills. He was trying to be discreet in the waiting room and asked me to justify the prescription (as if I’m the doctor!). Having tried to skirt around the subject so as not to disturb other patients, I ended up saying: ‘Look, I’ve got cancer, I want babies, these drugs will let them pump me with hormones post surgery so I can try for babies, and then I can have chemo. Is that ok?’ I think I may have over-shared to both the pharmacist and the entire waiting room. After that, I think he would have prescribed anything just to stop me talking!

Of course, it takes two to make an embryo. What’s the last thing any man wants to hear a few weeks after proposing: ‘Um, would you donate some of your manhood towards the greater good?’ Just need to make sure he signs the consent forms now before the next appointment!

 

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! 

Breast cancer lesson number one: Bridget Jones shouldn’t be the only company you keep in the hospital waiting room!

On By Jackie ScullyIn Diagnosis and treatment planning3 Comments

Sorry Bridget. It’s not you and your incessant calorie counting. It’s the fact you’re fictional! 

Diagnosis day is not something I imagine I will ever forget. When the highlight of the day is going to the hygienist, you know there’s something not quite right in the world!

Of course, ever the optimist, I didn’t think for one minute Friday 17 January 2014 would actually be diagnosis day. Dr Google had already convinced me the chances were slim and that I was more likely to have a fibroadenoma (if you want a bit of a science lesson) or ‘breast mouse’. 

That’s why I went to the hospital alone for the results of my biopsy and lymph node cell test. True to form, I was more worried about the fact there are only about two chairs in the breast clinic waiting room that have phone reception than I was the appointment itself.  Having spent enough time ‘guessing the illness’ with fellow waiting room visitors, I decided I would at least try and move chairs – all because I wanted to reply to a few work emails.

Benign lumps don’t need breast nurses to care for them. So, when a nurse came to collect me for my appointment, I already knew the result wouldn’t match my own rather amateur diagnosis. The appointment itself was a bit of a blur. I have just received the diagnosis letter in which the doctor describes me as being both ‘pleasant’ and ‘very shocked’. I am not sure inconsolable crying could ever be considered ‘pleasant’.

Amusingly, my thoughts didn’t turn to pain, suffering or surgery. In fact, I was more worried about the fact I hadn’t done my homework, researched the disease and constructed a detailed to-do list of actions and questions!

I don’t really remember the mammogram that followed (I didn’t have one at the start of the process, because women’s breasts tend to be too dense for the screening under the age of 40).  All I do remember is the kindness of those around me and the cups of tea, the tissues and my desperate attempts to reach family and friends. The phone reception is so bad at the hospital that I ended up mounting a very large window sill in the corridor to try and call my parents, Duncan and my amazing GP friend Hannah. Unsurprisingly, it wasn’t long before I was scooped up and ushered into a room – I think I was making the corridors look untidy!

I am happy to say that even on one of the darkest days in my entire life, there was still space for humour. The funniest moment, however, came from a rather unusual source: Waitrose. Not content with the bottles of champagne flooding in to help us toast our engagement, Duncan and I took advantage of Waitrose’s January offer of a free bottle with every online shopping order. Needless to say, the delivery wasn’t the first thing on my mind when Duncan and I got home. Imagine our surprise, when I opened the door at 6pm, only to be greeted by one of the happiest Waitrose employees I have ever seen clutching our free bottle and beaming from ear to ear. ‘What are you going to celebrate?,’ he declared. ‘So many things,’ I replied. The bottle may still be sitting unopened, but whoever you were, thank you Mr Waitrose man for making me smile.

I have always said that if you want something done, give it to me in January. You may have caught me off guard on one day nasty cancer cells, but I am going to spend the rest of my life making sure there’s only one winner! 

Dear breast cancer cells, you’ve picked the wrong person if you want an easy fight

On By Jackie ScullyIn Diagnosis and treatment planning, Reflections on cancer2 Comments

I’m Jackie and I’m a statistical anomaly. Even if I were an extra in the Hunger Games films, I have no doubt I’d somehow make it into the arena! In 2007, I had pelvic surgery to help me walk again because my hip socket couldn’t support my leg. I was 25.  Fast forward six years, and I am back in hospital with stage 2, invasive lobular breast cancer. It affects just 10 to 15 per cent of all women with breast cancer and is commonly found in those aged between 45 and 55. I am just 32. And, if we are to believe e-Harmony.com, it takes around 2.8 years for a couple to go from first date to engagement. I got engaged on Christmas Day, just over a month ago. We’ve been together 13 years!

Sat surrounded by tissues in front of my breast care nurse on 17 January 2014, I found myself steering the conversation towards numbers and probability. And it was then that I realised, I am not a statistic. I am a person – albeit with a wonky leg and unhappy right breast. It’s not scientific probability that’s going to get me through this challenge. It’s a positive attitude and a desire to get better – whatever it takes.

Diagnosis day over and I’ve read the fact sheets, made my question lists and signed up to everything I can think of to keep me positive and focused on the challenge ahead. And, you know what? I do feel positive. I know there will be dark days to come, but, as anyone who has read The Happiness Project by Gretchen Rubin will know (it’s an inspiring book for anyone looking to find happiness in daily life), the time for storing up memories, positive thoughts and ‘banking’ happiness is right now. I’ve made my 2014 resolutions and I am not going to let some over-excited cancer cells get in the way.

What keeps me going? Firstly, it’s the knowledge that the champagne that’s still arriving – to celebrate that long-awaited engagement – will one day get used (although there is now so much I might just have a bath in it). Secondly, it’s the knowledge that the bikini I bought for the first time in a decade in the January sales will be worn (my friend believes the only issue is finding good weather). And finally, it’s the knowledge that one day soon, I will walk down the aisle with a full head of hair and a healthy body. I didn’t wait 13 years to fall at the final hurdle!

I have decided to write this blog for a number of reasons:

1)   I was only diagnosed two weeks ago and I have already had so many hilarious (if you, like me, have a rather dark sense of humour), life-enhancing and inspiring (I defy anyone to spend an hour at Guy’s hospital and not feel humbled) moments that I want to capture, share and remember forever.

2)   I have been overwhelmed by the kindness of those around me. My breast cancer notebook (yes, I have a dedicated bright pink moleskin and a to-do list) is already filling up with great bits of practical advice that I am keen to share. My house is also filling up with kind gifts from friends (everything from dark nail varnish for chemo and pampering treats to my very own pink post-surgery boob pillow). I’m not the only one trying to stay positive and arm myself with every tip in the book. I want to share these practical tips to both inspire those diagnosed in the future and thank those kind enough to join me on this journey.

3)   As an open person, I find it difficult to hide my emotions and details of my experiences. I don’t think people mind discussing my latest baking experiment or magazine schedule. Breast cancer, however, is a bit different. It was the point at which I was discussing breast sizes with a client that I realised it might be better to write it down and let people seek it out – rather than fill their heads with talk of tumours and tummy tucks.

4)   I love writing and I am determined to do more of what I love this year! It’s about time.

Why ‘small boobs, big smiles’? When you’ve spent the best part of two weeks with your top off in front of surgeons and nurses, it doesn’t take long to work out that having ‘not much there’ is not an advantage. But, even when they were sizing up my tummy fat and cupping my less-than-ample breasts, I still managed a smile. That’s what this blog is about – finding happiness in unusual places.

The one positive thing about having had major surgery once before is that I know what I need to do to get through this. Last time, I feared the surgery, the hospitals and the pain. What I should have feared was my mind and the way the experience would make me feel. This time I am focused on keeping my mind positive – and letting the experts get on with fighting the cancer.

I know cancer is a frightening and debilitating illness, but I am determined to take what life-enhancing and enriching moments I can from it, while I can. I am already starting to ressemble a human pin cushion, but, you know what, I am still smiling. And I hope, that through this blog, I can help you find the smile that will help you keep fighting too.