Tag: breast cancer

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

On By Jackie ScullyIn Reflections on cancer4 Comments

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!

On By Jackie ScullyIn Reflections on cancer2 Comments

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

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

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

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

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

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

Breast cancer lesson number 23: Pain is inevitable; suffering is optional

On By Jackie ScullyIn Breast reconstruction surgeryLeave a comment

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!

On By Jackie ScullyIn Reflections on cancer5 Comments

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

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

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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

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

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

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

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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

On By Jackie ScullyIn Reflections on cancer2 Comments

Loss and cancer are like butter and toast – they belong together. So far, I have focused a lot on the positives surrounding this frightening illness (time with friends, happy memories, mashed potato and the excuse to stay in fluffy slippers all day long). The trouble is, cancer likes to give with one hand while taking something away with the other.

By loss, I don’t mean death (I haven’t gone all philosophical on you). By loss, I mean the things cancer (or its treatment) won’t let you do any more – be that temporary or permanent. We all hear about temporary hair loss with chemo (that might turn into permanent hair loss on the legs if I’m lucky). But there are other losses lurking, waiting to crop up and catch you off guard. The only loss I was actually hoping for was a bit of weight loss, so imagine my surprise when the breast care nurse said I should prepare myself to gain up to three stone while on chemo! I give you all full permission to march me to a treadmill is that happens!  

Temporary loss is easy to handle. The loss of sensation in right my armpit doesn’t trouble me and the fact walking to the station behind my house is like running a marathon is just a small hurdle I will overcome (did one giant circuit today so am gaining strength every day). And, you could argue, not being allowed to lift anything heavier than a kettle for six weeks is a bonus!

Permanent loss is a little different. I can’t say I’ve shed any tears over the fact I can no longer use a razor to shave my right armpit (for fear of lymphoedema) or the fact I won’t be able to hold my arm out straight with a weight in it (was never very good at my Bums, Tums and Thighs class anyway). I am even learning to love my new boobie (complete with a bit of my tummy skin as well as fat) after the old cancerous one was taken away (and I will get a new nipple tattooed on eventually). No, the loss that hit me, was finding out nobody wants me to donate my blood anymore.

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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

On By Jackie ScullyIn Breast reconstruction surgery, Happiness, Reflections on cancer5 Comments

When I think about happiness, I don’t think about two-week breaks in the sun, new cars (I still have my blue Nissan Micra from 1999), material items or grand romantic gestures (that’s lucky given I’ve only ever had one box of Valentine’s chocs in my life). Happiness to me is a little moment in time that makes me smile. It might be the smell of honey-roasted ham on Christmas Eve. It might be the warmth of the fire on a Sunday afternoon. It might be the sound of a funny TFL announcer on the way to work – or even, just a hot cup of tea and a mouthful of NHS mash. Happiness isn’t hard to find; you just need to a) know where to look and b) want to look!

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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. 

Breast cancer lesson number eighteen: There is no place like home… find new ways to enjoy it!

On By Jackie ScullyIn Breast reconstruction surgery4 Comments

Everyone has a moment in hospital when they think they will never be able to survive without the supportive smile of a nurse and a syringe of morphine. But, the great thing is, the comforts of home far outweigh the clinical feel of a hospital bay (my stay was lovely though and the nursing staff were amazing – even if they saw a bit too much of my bottom).

On the journey home, my mind was occupied with thoughts of soft duvets, warm pyjamas and fluffy slipper booties. One thing that never crossed my mind, however, was that home looks quite different when you can’t lift your arm properly, you’re a bit stooped and you can’t touch your toes (promise that isn’t just as a result of my mum staying and cleaning in my absence – thanks mum). My world of four walls and five lots of stairs has never felt so big (making it to the lamp post across the road is a big adventure right now)!

Had I done a quick risk assessment before I was treated to a few body enhancements, I could have made life post-surgery that little bit easier. So, here are 10 quick tips and insights to make sure the heart in your home is not dislodged:

1)    Clean before you go in: now, I would say the house was pretty tidy before I left, but there’s nothing like an irritating bit of fluff to make you feel like you’ve ‘missed a bit’. I am thankful that a) I bought a new, lighter hoover in the sale, and b) my mum is excited about using it!

2)    Never go it alone: I am probably the luckiest patient alive in the fact I have a wonderful semi-retired nurse for a mum. She helps me wash, plan my pills, cook, climb the stairs safely and, most importantly, gets me in and out of bed when I am too tired to do it myself. I have one more week of this domestic bliss before Duncan and I will be going solo (wish us luck)!

3)    Look after that bottom: The first thing I did after making it out of the car and over the threshold was head for a chair. Trouble is, every chair in my house is now suddenly too low. After a bit of musical chairs, we now have ‘Jackie-proof’ seats in every room. My favourite is my sofa spot in the living room (less said about the 22-year-old sofa, the better). I have a raised seat, a few pillows, my Tender Cush cushion and my slanket on the coffee table if I need to raise my legs. Only problem now is summoning up the strength to get up.

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4)    Surround yourself with what you need: Once you’re sorted on the seating arrangements, make sure you have everything at arm’s length. I have a tray on the sofa next to me for my drinks, phone, diary, lip balm and book. It gives me the illusion of being independent without the feeling I am trying too hard.

5)    Practice the toilet run: When getting to the toilet involves a flight of stairs, you almost need to plan in when you’ll need it. We’ve got a nifty routine now that even allows me a little bit of dignity. I am also delighted to report that I can now pull my knickers up on my own (what a result!).

6)    Get comfy in bed: Now, unlike the gismo-laden hospital beds, my old bed and partially-comfy matress (it was only designed to last a year and that was 10 years ago) don’t help you sit up or bend you legs at the press of a button. With a little bit of creativity, however, and the help of little Tender Cush, I have found the perfect position that gives me hours of much-needed dreamless sleep. I have also worked out a foolproof system with my mum. If I bang on the wall through the headboard in the night, she takes it as a sign to pop in and watch as I trek down the stairs to the loo. She hasn’t missed a knock yet!

7)    Plan your wardrobe: Ok, so pairing tracksuit bottoms and zip-up tops is not like planning a night out, but if you can make piles of your clothes and knickers, it makes choosing what to wear each day really really easy. One thing I did find is that it’s hard to wear a normal coat over a fluffy zip-up top. Enter my friend the soft gilet. Keeps me warm and offers extra boob cushioning.

8)    Be kind to yourself: I have quickly realised that now is not the time to take on the world (as much as I’d like to). My new bedtime is 9.30pm (made 10pm yesterday thanks to a little thing called Jonathan Creek) and the highlights of my daily routine include showering, tea drinking, writing and spending time with mum, Duncan and friends (both in person and via the wonderful world wide web). I am known for living life in the fast lane (I can’t even watch TV without a project on the go), so scaling back to the pace of a snail does involve some adjustment.

9)    Set yourself some targets: I had never really noticed the layout of lamp posts on our street. Now, they are my walking markers. First day I thought to myself, let’s walk to the postbox 400 metres away. After crossing the road and making it to the first lamp post (more like 20 metres), I was done. I have made progress each day (walking to the train station today) and am planning a little circuit tomorrow, so let’s see how I do (I must add, this is all to do with tight tummy and not swollen boob and sore arm).

10) Aim for variety: I love writing, texting, tweeting and, generally, keeping in touch with the wider world. It keeps me grounded. It also keeps me sat in my sofa seat. The key to a good recovery is rest, rehab, reading and not too much of the same repetitive activity. Read the physio booklet and it sounds like a ban on all the things that make me who I am (eg limit the knitting, the computer work and the writing). Seems like I might need an activity overhaul. The only thing I agreed with was limited dusting. Dusting rarely happens when I have full use of my arm!

Home may not be a hive of activity it once was, filled with freshly baked bread, cakes, craft and knitted items. But, with a few handy adjustments, it still has a strong heart – and it’s beating well right now!

Breast cancer lesson number seventeen: The body is an amazing – and unpredictable – thing

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

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

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

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

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

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

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

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

Breast cancer lesson number sixteen: If you know what you’re in for, the road ahead seems a lot less daunting

On By Jackie ScullyIn Breast reconstruction surgery2 Comments

As one of life’s planners, I know how important it is to be prepared (by which I don’t just mean making sure you have enough big knickers to see you through your hospital stay). While no one knows how you are going to respond to the treatment, or how well your body will recover after surgery, I think it’s helpful to have an idea of what might happen in hospital and what gismos you might just find strapped to you when you wake up!

So, here’s a quick peek inside my hospital diary. One small caveat before you are immersed in a world of cannulas and heart monitors. Every cancer, surgeon, care team and ward is different. This is my personal experience and you may find you get a few extra goodies (or a few less) depending on what you have, what you need and where you are. This diary is also based on having a full mastectomy, a DIEP (tummy) flap and an axillary clearance.

Day zero (probably so-called because you miss most of it due to the anaesthetic)
Highlight of day: making the recovery team laugh (even though they were probably just humouring me)

1)    Breast reconstruction surgery is big surgery. As such, you get your own theatre list (of one) and a team of about 10 people dedicated to you for the whole day. This means you will be due at the hospital around 7.30am to get prepped. It made me laugh when we arrived at the surgical admissions unit at about 6.50am only to find a queue of about 15 people already ahead of us. It’s certainly not a case of first come first served in the surgery game!

2)    Once you’re marked off the list, you’re given a little room to wait in. I was also given a urine pot (lucky me) for a quick sample. Quick change into a gown, some disposable panties, some white anti embolism stockings, dressing gown and slippers, I was ready to be visited by two nurses, one phlebotomist, a surgeon, a doctor, a researcher and an anaesthetist. One blood pressure check and a quick art lesson on my boobs and stomach later and me and my post-surgery bra were escorted to the anaesthetic room (via a hot blanket machine). It is worth noting that I didn’t see the cancer surgeon (or removal man). Hopefully I will meet him one day to thank him for saving my life.

3)    The anaesthetic room consisted of me, my lovely anaesthetist (who came to visit me in the ward afterwards and promised me some good drugs), a surgical nurse, a bed and cupboard full of drugs. The surgeon popped in to wish me luck (at which point I wished him more luck!) before I was fitted with heart monitors, an arm-holding contraption and the first cannula. The room was really cold, but after two hot blankets and some sleep-inducing drugs, I was off in my happy place and gone!

4)    I believe there was then lots of cutting, cancer removing, fat moving and sewing up. Apparently, they put you in the so-called ‘Jesus’ position for the op, so they have full access to the arms. Thank god for anaesthetic!

5)    Recovery was a row of beds and lots of monitoring. I had three cannulas, one arterial line measuring my blood pressure, a blood pressure cuff on my ankle, four drains, heart monitors, an oxygen mask, a catheter, a moving bed and, the weirdest bit, an inflated hot blanket to keep my temperature up. Interesting to note that all the needle/cannula action was on my left arm. My right arm is now off limits due to the axillary clearance, so was having a nice rest after being attacked earlier.

6)    After four hours, enough morphine to soothe a small nation (they kept turning off my PCA to give me extra shots), two small sips of water (we pretended the first one was a good red wine and the second one beer) and lots of laughter (particularly enjoyed watching one of the recovery nurses trying out a moving mattress to check it was working), I was being prepared for transfer.

7)    Five minutes with mum and dad and I was set up for a night of monitoring. Everything from my heart, blood pressure and temperature to oxygen levels, fluids and pain levels were checked at regular intervals. Sadly for the nurse looking after me, my PCA was playing up. Every time I pressed the button it started beeping. One other machine also kept beeping to tell him I wasn’t breathing. This was a little disconcerting at first, but we were laughing about it within an hour. Then came boobie testing. This consists of someone pressing the boob to check for blood flow and then holding an ultrasound monitor to the flap to wait for a pulse.

For a short day, it was a pretty long journey. Key aim: get through the night.

Day one
Highlight: Morphine, morphine and, oh yes, more morphine

1)    Day one was a dark day. While it was wonderful to lose the heart monitor, the hot blanket, the drips and the constant checks, it was a day defined by pain.

2)    I was visited by a surgeon and I was, at last, allowed some food. But, there was only one thing I wanted: drugs. I couldn’t even get out of bed.

3)    Rest of day was a bit of a blur. I felt like my tummy was ripping apart so got into a routine of: pain, tears, drugs, pain, tears, drugs (and tea), pain, tears, drugs! You get the picture!

4)    One piece of advice: don’t worry if your limbs swell up. My right arm trebled in size and a nurse suggested it could be permanent. I looked alarmed, but was later reassured it’s just post-surgery swelling. It eventually goes down – and it did!

Day two
Highlight: A shower

1)    What a difference a day makes! Following a ward round that it sound like I’d be going home tomorrow, I got up, got showered, had more morphine, got out of a gown and into a nightshirt, had mashed potato, had more morphine, saw family and friends, watched as 15 people crammed into the bay opposite and started praying, had more mash and more morphine (now morphine mash would be a novel idea).

2)    There was a lot of peeing. With the catheter out, I got up six times (with a nurse). By the sixth, I was pleading with my body to stop. The nurses laughed along, but did have morphine on tap!

3)    I went into hospital with a grannie leg (full of metal, hates the cold) and I now have a grannie stoop (bent double due to tummy tuck). Nurses said I had aged about 30 years.

4)    One thing that hasn’t featured yet? Sleep. Yep, there wasn’t a lot of that, but when you’re looking at the London Eye all lit up at night, it could be worse.

Day three
Highlight: Less peeing, more mash

1)    Hospitals come alive on a Monday. I had seen my surgeon, my breast care nurse, a physio and a pharmacist before I’d even had a cup of tea! The surgeon was very kind, even though he insisted on shaking the hand on my bad arm twice (this was a very swollen arm with limited movement)

2)    When drains produce less than 30ml of liquid in a day, they’re out! As a result, two came out today. I obviously look friendly (or a bit gullible) as they requested a student take them out. She was brilliant though and will make a fantastic nurse.

3)    Glad to report, had lost a few years with less stooping.

Day four
Highlight: Taking the stairs

1)    When you’re helped to the toilet through the night, it is quite disconcerting to be told that on day four, you’re flying solo. Today was my equivalent of independence day, and I am delighted to say, I passed with flying colours. A wash, a walk, a flight of stairs and many toilet trips later and I started to doze off in my chair at 2pm. Yep, I am still 32 not 102!

2)    Slight blip came from the mirror moment I wasn’t expecting. Have suggested to the hospital that this is planned for others next time. The body has been savaged and, if you’re not ready to look, it can be quite scary. I am, however, delighted to think I might have had a slight augmentation factored in (although that could be the swelling).

3)    Drain number three came out. They don’t really hurt, but this one felt like it stretched the length of my abdomen, so was a like a worm inside my abdomen.

4)    I slept for four hours (did a little stooped dance round the bed).

Day five (to seven depending on speed at which you recover)
Highlight: A poo and home time!

1)    After many doses of Laxido (don’t be fooled by the orange smell, it tastes of gritty nothing), I have conquered the constipation. Was threatened with suppositories, so that may have done the trick!

2)    I passed the final drain test, so no need to carry it home. The doctor on the ward round said: “you’ve done really well”. Yay, big tick on my medical notes!

3)    Having cleaned out the chemist (bye bye morphine, but hello truck load of painkillers), said nice things on feedback forms, and signed my discharge papers, I am given permission to leave the building!

4)    One word of advice: use a wheelchair to get to the car park. I foolishly thought I would demonstrate my straighter posture to my mum and Duncan’s dad. The walk was fine. The lift was hell (felt like every jolt would rip my stomach apart).

5)    Back home and trying to get into a routine – but that’s another blog story!

Phew! That was a long six days. Am tired just thinking about it – and I’ll bet you’ll have sore eyes if you manage to get to the end of this post.