Tag: Hospitals

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

On By Jackie ScullyIn Breast reconstruction surgery, Fertility, Happiness5 Comments

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

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 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 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. 

Breast Cancer lesson number fifteen: Everyone needs a hospital survival guide

On By Jackie ScullyIn Breast reconstruction surgery3 Comments

As I lie here waiting to be helped into my tracksuit bottoms and discharged from the ward, I thought it would be a good time to see whether the ‘I-wish-I’d-known-that-before-I-went-in’ checklist would be extensive. You know what? It’s pretty short and mostly focused on things to think about – not items to buy.

In care terms, hospitals are the easy bit (someone washes you and even remembers when you need to take your pills). In psychological terms, they can be a trial, as patients battle with the comforts of being looked after and the often uphill struggle of getting through the day without pain.

So, here are seven little insights to keep you positive and make sure you don’t overstay your welcome:

Doctors and nurses know best: a hospital stay after major surgery is a strange experience. Within 24 hours of being sliced up, put back together and monitored closely, talks turns to getting you up and out of there. On the surface this may seem a bit mean (the NHS’s attempt to turn beds around quickly at the expense of a bit of after care). But, you know what, if you’re out of hospital, you’re further down the road to recovery, and that’s what anyone caring for you should want the most. I remember being told to get up on Sunday and thinking that it would be impossible to try. You know what? I immediately felt more human. I remember being told to start doing everything myself on Tuesday. I had a little cry thinking no one cared, but once I have washed my own face and managed a solo toilet trip, I felt more in charge of my recovery. It gave me the confidence to leap up the stairs and both the nurses and the physios thought I was amazing. That felt better than any amount of stroking and sympathy, I can tell you. Anything for a little gold star for being a good patient.

If you are uncomfortable, just ask: I have spent the last few days (with the exception of Saturday) trying to stay out of trouble (there were a lot of tears on Saturday). I asked for morphine only when in tears and I made do with everything in an attempt to be easy. Two things would have made life a lot better. More pain medication to relax me and a soft and static bed. I have just had a great night of sleep, because I listened to my body and made a simple request.

Don’t forget yourself in hospital: how easy it is to think that every swelling, shooting pain and a new ache is a life-threatening side effect. How easy is it to think that life is only as big as the four walls of the ward and a bed in the corner. The trouble is, if you fight to get back to who you are from the start, the chances are, your body will respond positively. The guy in the recovery room described me as a perfect patient, not because I didn’t ask for help, wasn’t in pain or didn’t say random things about my hand leaking. It was because I responded to everything, I was patient even when the morphine wasn’t working and I treated each person caring for me as a human being. I even found some time for humour, at which point the nurse said: ‘I can’t believe you’ve actually just general anaesthetic, let alone major surgery’. Where there is humour, there is happiness.

Do what it takes to have a good night sleep: hospitals never sleep, so don’t expect to. The bright lights in hospital make you feel like you are lying in a sports centre. Add in a few loud and random noises (the medication trolley, the blood pressure monitor, a bed brought in from surgery) and it’s hard to imagine ever being able to get to sleep. There are times when you won’t want to sleep at all (I got very anxious when I was on a combination of heavy drugs and thought I would stop breathing if I went to sleep), but when you feel like you can, you have to do everything in your power to try. I have had my first good night sleep in two weeks and I feel a lot more like me. Ear plugs and eye masks are a great idea (the hospital provided me with some, so just ask).

Thin clothes are the answer: it may be February, but the hospital feels like a Hawaiian Island (that could be due to the morphine). If your clothes are cotton and thin, you are more likely to feel comfortable and relaxed. I had a few nightshirts, a couple of bras and three pairs of big knickers and that was enough. The Royce post-surgery bra is amazing (so soft and comforting). I will probably be living in this and my abdo binder for months.

Keep strong in your mind: there are people there to treat your symptoms and take away your pain. There was no one there when I was left to look at myself in the mirror yesterday and see the results of the surgery. I cried and then I remembered why I am doing this. I drew on my inner strength and I got through. No one knows the real you when you are wheeled onto that ward and they can only respond to the person you decide to be in hospital. Be strong and they will be strong too (you might even get extra biscuits).

Order mash with most meals: just try it for me! It’s pretty special.

So, if you are about to be admitted, or find yourself in one of these caring institutions in the future, try and be the best patient you can be. You will be rewarded in so many ways – the ultimate prize being a discharge note and a bag of pills!

Breast cancer lesson number fourteen: Prepare yourself for the big reveal… It hurts

On By Jackie ScullyIn Breast reconstruction surgery3 Comments

Today marks the start of my return to independence. I have already wiggled my slippers on, waddled slowly to the toilet without a supportive arm and managed to wash my face. My moving mattress is now just foam, so there won’t be any more late night parties. I have also conquered the stairs without my wound feeling like it’s ripping apart. That means I am pretty much ready to go home.

Today has been an unexpectedly big day. Not because I can now pull my big knickers on. Not because I am getting my third drain taken out (leaving me with just one to take home with me tomorrow). No, today was the day I saw myself in the mirror for the first time. And, the worst bit is, I wasn’t prepared.

Looking down certainly doesn’t prepare you for looking in the mirror. I had accepted the challenge of washing myself independently and, before I knew it, I was sitting facing the scars and trying to make friends with my new flap. I had believed the nurses and doctors when they said it looked amazing (and it does in medical terms). It’s just that a scar from hip to hip, a new belly button, a large swollen lump in place of a cancerous boob (with no nipple) and a very swollen arm from the lymph node removal is quite a lot to take in. I may be healthier right now and I should be rejoicing about that, but I just feel a bit like an alien. Until I love these new body parts, how can I expect any one else to love me?

There is a small blessing in all of this. I have never been a woman defined by my looks. I’ve had spots, I’ve been overweight many times, my style is what could only be described as timeless (because it pretty much never changes, not because it’s stylish) and my walk is unique to say the least. I grew up being teased for the way I look and walk and I am strong enough now to know that it’s not a bit of body tissue that makes you who you are. It’s the person you are beyond the scars that matters.

A lovely nurse said something beautiful to me yesterday. She said: ‘disease makes us beautiful’. By this, she didn’t mean there are a queue of people dying to get stitches and surgical bruising. What she meant was, every obstacle we face reminds us of the important things in life and gives us the space to work out who we really are and what we really want. Each scar is a reminder that life is hard, but every time you recover, you learn to see more beauty in both yourself and others. We can be beautiful in other people’s eyes because we can see the pain others can’t and we can be the shoulder or support when others’ backs are turned. Put it this way, if beauty were defined by the amount of hurdles we face in life, I’d be Kate Moss.

While I will never be beautiful, I hope that my scars (once I have learned to love them), will give me the strength to support others and help them find the beauty within.

So tomorrow is the beginning of the real post-surgery recovery at home. There is only one thing I will miss from this first stage other than the beautifully smooth mashed potato – and that’s the view. London, with its bright lights, busy streets and Big Ben alarm clock – is pretty good company when you can’t sleep (and I’ve had what feels like about three hours in total in hospital). Walking by the river on operation day felt like a different kind of London. Away for the usual crowds and commuters, it was preparing for the day, with workers sweeping up, switching on and keeping the city’s heart beating. Looking out over the water at night, it feels like another world driven by bus timetables and lone wanderers, not blood pressure machines and drain bottles. It may be the city that never sleeps, but in the early hours even the centre can feel like the quietest place on earth.

There’s only one thing I have to do now before they let me go tomorrow – and that’s have a poo. Easier said than done…