Breast cancer lesson number seven: Cake is good for the soul and great for the boob!

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

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 five: If it’s all coming off, it’s time to start experimenting

Today was supposed to be a good hair day. Having booked a colour appointment for the first time in about seven years, I had planned to return to my blonder days (I confess to being one of those people who still writes ‘blonde’ to describe myself, when I am as mousy as they come) and discuss bridal hair styles.

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Let’s just say today didn’t quite go according to that plan! For those who know me well, I know what I like and I like what I know. I’m the girl who orders chicken tikka masala, special fried rice and a garlic naan because I fear the disappointment of trying something new. That includes my bob, which has been a friend to me these last six years.

Imagine my hairdresser’s surprise (lovely Jon, who is the amazing manager of Sean Hanna in Canary Wharf and has been cutting my hair for years), when I sat down this afternoon. He said: ‘same as usual?’ I said: ‘Not this time’.

Ok, so I haven’t gone pixie (that’s for the post-surgery, pre-chemo days in about six weeks time, so watch this space). What I have done is try a Michelle Williams look (as recommended by my lovely colleague Rachel) with the wind on my neck and my ears on show. For me, it’s bold. For those with short hair already, it’s not exactly radical. I appreciate I look nothing like Michelle Williams, but you get the picture. I think Duncan is going through an adjustment phase, but we both agree, it’s a good step towards the no-hair days!

Today wasn’t a good hair day. It was a great hair day. It was a day that taught me if you’ve got confidence and a smile, you have nothing to fear. Whatever the chemo days are going to throw at me, I’m ready.

You may take my hair (preferably starting with my leg hair), but you won’t take my spirit!

Breast cancer lesson number four: the time to have that awkward conversation is now!

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!

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

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!

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

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.