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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Breast cancer lesson number 26: Make every day a milestone day

Today is a milestone day. Ok, so it’s not exactly on a par with diagnosis day or pathology results day (just a few of the compulsory days Breast Cancer likes to throw in to keep us entertained). But, that doesn’t make it any less meaningful. No, today is the day I come off Provera (my progesterone hormone). That means, in a few days time (if my body plays ball), the fertility side of my treatment will begin. Self injecting here I come!

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Moments in time don’t have to be monumental to make it as milestones. When you are strapped into a body corset, even getting to the end of the road can feel like a huge achievement! So here is a glimpse into my world of the major – and not so major milestones – that have made a mark in my diary these last few months. I hope this will help those facing the cancer challenge in the future to understand a bit more about timeframes and what to expect.

1) 24 December: Lump discovery day
Arguably the most important day (and most valuable shower) of my life. I took the discovery seriously, but am glad to report, it didn’t put me off the Christmas ham.

2) 25 December: Proposal day
Ok, so not fundamental to the story, but it’s a lot easier talking about losing a boob and making embryos when you have a man by your side (and a ring on your finger). I am a lucky lady.

3) 27 December: GP referral day
Not the most reassuring of visits I’ll admit, but the doctor acted really fast and referred me straight away. I know a lot of young women are told to come back at another point in their cycle to see whether the lump has changed size, but thankfully, due to it being Christmas, I got my referral. Just another reason to love Christmas!

4) 9 January: Hospital appointment day
Was planned in as the morning before, but due to work commitments, I moved it to the Thursday morning. I know how stupid that sounds, but I really didn’t believe it was anything other than a breast mouse. Let’s just say, I have learned my lesson (and missed a fabulous annual client lunch that day as punishment). What started as a quick ‘feel’ turned into an ultrasound, a few biopsies and a rather awkward conversation with two consultants (they didn’t say cancer, but they did ask about my family history A LOT).

5) 17 January: Diagnosis day
Not a day I’ll forget…ever! Crying, mammogram, more crying, truck load of leaflets and, you guessed it, more crying.

6) 18 January: The day that taught me the value of friendship
Afternoon tea at the Modern Pantry was made all the more sweet with a close friend at my side. Having hidden away for months, this day encouraged me to get out my phone and start planning (trips to Sketch, nights with Darius, relaxing walks and home visits). I love my friends and the colour they bring to my days.

7) 23 January: MRI day
Four needles, one arm full of contrast dye and a noisy test to determine whether or not I could have a lumpectomy.

8) 25 January: Feeling human day
I had a facial. No one mentioned cancer. I walked into a shop (ok, so I was buying track suit bottoms and zip up tops) and someone told me I looked and smelled great. I smiled. It felt good.

9) 27 January: Diagnosis day (part two)
More cancer, another biopsy, a trip on a secret staff bus, a plastic surgeon meeting, pre-op testing and a lot of tummy squeezing. The mastectomy is on, the tummy is borderline.

10) 31 January: Fat testing day
One CT scan and one feel-like-you-are-wetting-yourself moment to check whether I had a good blood vessel in my tummy to transfer to my boobie.

11) 1 February: The day I decided to start this blog
A major mental milestone, this blog helps me stay positive, while keeping my loved ones informed and helping others diagnosed with the big C!

12) 4 February: Carbo-loading day
Ok, so with the volume of chocolate coming through the letterbox on a daily basis, this was more like a two-week period. But, on this day, at a work away session, I ate a lot. I believe this was a major step forward for tummy and will always think about it when rubbing aqueous cream into new boobie.

13) 10 February: Decision day
Tummy confirmed as new boobie. Did a little dance (away from the surgeons of course)!

14) 14 February: Provera day one
The countdown to freezing embryos begins. Won’t mention what happened to Duncan that day. More of a fertility milestone for him than me. And on Valentine’s Day!

15) 15 February: Last supper with D day
Sounds a bit dramatic, but it was actually a beautiful meal at the Cutty Sark pub that reminded me of the importance of taking time out to savour special moments with loved ones.

16) 19 February: Pre-assessment and mobile off day
Memorable not because I found out about leeches, physio moves and arm measuring, but because I turned my work emails off on my Blackberry for the first time in a long time. The red button now only flashes to alert me of good wishes.

17) 20 February: the day I tried my first ever Nandos
Ok, don’t judge me. Not quite the last supper I had imagined. Couldn’t resist. First time ever – and with my parents.

18) 21 February: Surgery day
Wasn’t around much, but hear it went well. Got a new boobie. Got rid of cancer. Not a bad day.

19) 22 February: The day I survived
Owwwwwwwwwww! It hurt, but I got through it, and that is all that matters.

20) 23 February: The day I got up
Getting out of bed is only a big event if you thought you’d never get out again the day before.

21) 24 February: The day the drains started coming out
They don’t hurt if you breathe in and out three times and follow the nurse’s instructions. Go to your happy place and you’ll be fine.

22) 25 February: Big reveal day
I don’t think I’ll ever forget the mirrors or the tears. I did manage to wash myself and pull my big knickers up though, so it wasn’t all bad. I also got rid of that moving mattress (certainly something worth celebrating).

23) 26 February: The day I got released
Hospital day 5 means home time. Felt good sinking down into our old mattress and getting settled with my home comforts.

24) 1 March: The day I did nothing
Having overworked my arm the day before, today was a day of reading and film watching. Never underestimate the restorative power of nothing. I have been too busy in life to notice.

25) 3 March: The day I finished my first post-surgery book
I love books, but could never get into them after my hip surgery. I take this as a good sign my brain is starting to fire again.

26) 5 March: The day I dressed myself
Wouldn’t have made this a milestone a few weeks ago. It’s amazing how much excitement can be gained from putting your socks on. I also passed wound care today, so one step forward.

27) 6 March: The day I walked in the park
Ok, so we had to drive there, but Greenwich Park had never looked so inviting with the early signs of spring. I even got to see the deer and admire the view.

28) 7 March: Pathology results day
The first day of the rest of my life. A big meeting that reinforced the importance of seeking out milestones and making a difference every day. Friday was also the day my wonderful nurse of a mum went back home to leave Duncan and I to fend for ourselves. I am happy to report that we are doing pretty well. Duncan is spending most of his time trying to stop me lifting things (I have resorted to painting my nails in the hope that the frustration of chipping the paint will stop me in my tracks) and we did have a rather interesting discussion about the merits of a scrubbing brush when doing the washing up (he is going to buy one this weekend).

29) 8 March: Duncan does the washing up day (and gets a quick look)
A monumental life event. Ok, so he struggled with the pan, but he did great (even without a scrubbing brush). His reaction to the ‘new’ me was thoughtful and kind. He even towel-dried my back when I couldn’t reach. I also got to remove the sticky mesh on my tummy and the final steri-strips on my boob, so am starting to look less like an accident victim.

30) 9 March: Bye bye Provera day
The window to help preserve my fertility is starting to open. Have also just had a lovely lunch outside for the first time this year.

They may not be big, but for me, each one of these milestones has made 2014 one of the busiest and most emotional yet – and it’s still only March. Each date has made such a lasting impression, I didn’t even need to consult a diary to write this post.

There will be many more cancer milestones (and more tenuous ones) to come (from chemo day one to radiotherapy planning day and the day I get my first tattoo) and I intend to embrace and smile in the face of each one. After all, a life without milestones, however small, is not really a life at all.

So, raise a glass to milestones. May you all have many happy ones this year.

 

Breast cancer lesson number 25: Now is the time to stop waiting and start living

Ask me what one of the hardest things about living with breast cancer is and I won’t mention the pain, the frustration, the sadness or the fact I can’t wear pretty much anything from my wardrobe (if it’s not button up, zip down or very stretchy, it just won’t work). For me, an impatient, ambitious, run-before-you-can-walk type person, one of the hardest things is the waiting. Because, when you’ve got lots of tests and a dedicated team all rallying round to save you, there’s lots of it!

Now, by waiting, I don’t mean waiting rooms (with a good book and my mum at my side, I could wait all day). I still have mixed emotions about the fact there is rarely anyone even close to my age in any waiting room (I nearly pounced on a young woman on pre-op day because she looked like she was in her 30s). No, by waiting, I mean waiting for the next hospital appointment, waiting for the biopsy results, waiting for the surgery, waiting for the pathology results, waiting to start fertility, waiting for chemo and waiting for the letters summoning me to all these things to come through the door. It’s not the waiting so much as it is the fear and the sleepless nights that descend when certainty is replaced with those wonderful words: ‘what if?’

Waiting in cancer land is like queuing for a new ride at a theme park. You have a rough idea of how long it will take, but that gives you no comfort. You think, when you join the end of the queue, your turn will just never come. And then, when it’s your time to sit down waiting for the action to start, you wonder why you even wasted a moment worrying. That is, until you join another queue for the next ride and the pattern starts all over again. I’m a Brit, I’m polite when queuing, I’m a patient patient, and I should really relish the opportunity to stand in line and wait my turn. Trouble is, when your life is on the line, even the smallest of waits seems like an eternity.

There is one comment from yesterday’s pathology meeting that has been playing on my mind. When I asked about the future and the probability (the higher the stage, the higher the risk) of the cancer returning, I was faced with a lifetime of uncertainty. Every individual and every cancer diagnosis is different. My surgeon explained that if I can get through the next 10 years, I can get through the next 60 (92, maybe I’ll be the fittest grannie going). That’s one whole decade of standing in line. Even I, queue queen (I have a tendency to gravitate to lines longer than about five people), think that’s a pretty long queue. Yesterday, I walked into the hospital thinking I just had chemo left. I came out with a course of radiotherapy thrown in too. Cancer doesn’t play by the rules and stand in line, so why should I?

So today is the day I stop waiting and start living. The appointments will come and go, the treatment will come and go. The cancer was here and now it is gone. Life is a colourful tapestry of memories and magical moments – and most of these aren’t made while waiting for something to happen. I will go to the Amalfi coast (after years of hoping), I will get married (once Duncan agrees to there being more than four guests), I will achieve my dream of looking good in a pair of shorts (maybe not this summer while on chemo) and I will try and seek out something in every day that reminds me that you only get out what you put in. Your challenge, should you wish to accept it, is to help me keep smiling, keep positive and keep adding to that tapestry so that this next decade can be the best one ever!

Diary, you’re about to get busy! 

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

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 23: Pain is inevitable; suffering is optional

Ok, so this hurts. By this, I mean the fact that I can’t bear touching (or anyone else touching) my upper right arm, the fact that when I laid on a hospital couch with my corset off yesterday, I felt a terrible pulling and the fact that, try as I might to push through the pain, I just can’t sleep on my side (good or bad). I know it’s temporary, but I wish it would hurry up and subside!

This pain is my own fault, so no need to dust off the sympathy violin just yet (the ‘woe is me’ will be over presently). I’ve been keen to cut down my pill intake so that, when fertility starts, I won’t feel like a walking chemist. I thought I was doing the right thing. I thought I was recovering really well. I think I might have been a little bit too ambitious (oops).

For those of you who’ve had major surgery, you’ll know that the treatment of pain is unlike that of treating a graze or a thumping headache. The aim of the game is to eliminate pain from the start, and then ensure it stays away – rather than only taking pills when the pain strikes. For my hip, for example, I was assigned my very own pain team, who were tasked with making sure I didn’t feel pain – let alone think about it. I did pretty well, until the nerve pain descended, making it feel like my leg was being split in two.

This time, when the anaesthetist’s parting words in the recovery room were: ‘I’ve been generous with the pain medication,’ I knew I was in good hands once more! My PCA was packed with Fentanyl to tackle breakthrough pain, and the liquid morphine (Oramorph) was a welcome friend after a walk to the shower room.

Of course, controlled medications don’t usually make the outpatient pill package (I had to confirm my name, date of birth and hospital number just to get a shot of morphine). But the combination of dihydrocodeine, omeprazole, ibuprofen and paracetamol – along of with my meta progesterone pills for fertility – has kept me in a comfortable and happy place since leaving the ward – as long as I take them that is!

One quick aside: as a cancer sufferer, you do qualify for a prescription exemption certificate, which gives you free prescriptions. Ask your breast care nurse for a form, post it off and a nice credit-card sized treat will arrive through the letterbox.

I’m not sad writing this. I’ve learned my lesson, and I am committing this to virtual paper to remind those dealing with pain to ‘take the pills’! I’ve had my pill cocktail to start the day and it’s already making a difference. I am also happy to report that yesterday was not all grimacing and winching. I passed my wound care clinic appointment with flying colours and there was only minimal weeping – from the saucepan-shaped wound on my new fleshy mound, not from me. It was slightly odd that I didn’t feel the cold solution squirted on my new boob or the steri strips being removed, but I won’t complain about numbness (in many ways that’s a blessing).

While thinking about this blog post, I typed the word ‘pain’ into Google and something beautiful appeared. It was the word ‘hope’, redefined as an acronym: Hold On Pain Ends. As long as we have hope, we have the strength to know that one day, we won’t feel pain any more.

In many ways, pain should be the last thing on my mind right now. I have my big pathology meeting tomorrow to determine the course of the treatment. Wish me luck!

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

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!

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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

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.

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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

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.

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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

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!

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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.