scars

Breast cancer lesson number 31: What you lose in dignity you gain in confidence

I lost my dignity somewhere between getting drawn on by a surgeon with a giant marker pen (in front of another surgeon and my parents) and having an unexpected internal scan at my first fertility appointment. That’s not to say that my amazing hospital doesn’t go to great lengths to protect it with their well-placed gowns and paper towels. But, when you’re picking out your clothes based on what gives people ‘easy access’ you know it’s pretty much gone – and the chances of recovering it are very slim (I appreciate that may make me sound a little bit like a loose woman. But, trust me, it’s all in a good cause!)

Surprising as it may be to hear, I don’t want it back. In its place, the hospital has inadvertently given me something so much more important: a massive dose of body confidence. That’s not to say that I have a burning desire to take my top off or wear more revealing clothes (I don’t think the world would ever be ready for that). But, by encouraging me to undress at pretty much every appointment (sometimes just out of pure curiosity and kindness), I have realised for the first time that I’m happy with my lot.

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It may sound strange coming from someone with a large scar down her hip (and four giant metal pins inside), a scar on her neck from a old birthmark, a walk that looks like it belongs on the comedy circuit, an amputated boob (and a new imitation one without a nipple currently), straw-like hair, a scar the length of my tummy and so-called ‘child-bearing’ hips. But, every time I look in the mirror now as I massage my modifications and wash my hair, I don’t see my flaws. I just see strength.

I know I’ll never be stopped in the street or take someone’s breathe away with just one look. I know that I’ll never be able to wear short skirts and look good in a pair of shorts. I also know that when fully clothed I am just another plain Jane on a commuter train. But, what makes me smile is that, beneath the pink cardigans and the navy dresses, I am a warrior. And, if you asked me to choose, I wouldn’t change a thing (beyond getting a serious illness in the first place of course). After all, if the world wanted us all to be beautiful, it wouldn’t have invented mascara! And, I love mascara!

Beauty isn’t about having good skin, it’s about being comfortable with what you have and accepting who you are. You’ll find there’s a cream for everything else.

So, I challenge you to stand in front of the mirror this weekend and smile. Smile at the good bits (I am positive you all have something about which you are particularly proud. For me, I have always liked my eyes and my shoulders). Then, most importantly, smile at the bits that make you who you are (the childhood scar you’d wouldn’t have had if you’d listened to your parents, the finger nail that just doesn’t grow the way you want, the knee that hurts, the big toe that you always bury in thick socks).

Smile because you’re you. I wouldn’t have you any other way!

NB: if you’d like to find out more about scarring and breast reconstruction (with DIEP), head to lesson number 21.

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

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

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

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

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

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

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

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

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

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

Breast cancer lesson number 21: Scars are tattoos with better stories

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

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

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When I came out of my hip surgery with a drain mark, a seven-inch scar and 44 holes, I thought I was pretty hard. Looking down at each mark today, I think of the moment I learned to walk again (in my parents’ kitchen), the moment I took my first post-op cycle ride and the moment I stepped back into high heels (still look a bit tipsy in anything over a centimetre so this is still a rare occurrence). Little did I know that just over six years later, there would be a few more impressive scars fighting for the top spot as a marker of life’s challenges.

With my wound care appointment and my first trip back to hospital since surgery fast approaching, I thought I’d take a moment to assess the scars that are now covering my body (don’t worry, there won’t be any photographic evidence).

1)    The tummy tuck: appropriately I think, the big tummy tuck scar is a 38cm whopper in the shape of a smile. It is glued together (open for the eyes to enjoy) and is covered in a thin sticky mesh tape, which keeps it protected and attracts every bit of fluff possible. When I look at it I smile at how flat my tummy is and how many people contributed to the chocolate fund to enable me to have the surgery. I am very lucky. I believe it will look angry for 12 to 18 months and will then be neatly tucked away under my bikini line. Nice!

2)    The drain holes: two in the abdomen and two down the right side (with a few pinholes where the stitches were). Blink and you’ll miss them! When I do locate them I think, they were painless tubes attached to sports bottles and they did a good job. Thanks drains!

3)    The belly button: Now moved to its new position (quite what they did I will never know – cut it out and dig a hole to reposition it?) it is surrounded in stitches that look like threads of cotton. I think I get a trim tomorrow when I go in! When I look at it, I laugh at the fact they went to such lengths to keep it in a normal position. They think of everything.

4)    The boob: imagine a milky mound with a saucepan-shaped scar on it. Basically, the boob skin is still the same, except for a circle where they took off the nipple (the nipple area is now a flap of skin from my missing tummy – complete with light tummy hairs). There is a line extending out from the circular scar, moving towards to the right armpit. This incision helped them reach and extract all my lymph nodes, saving me from a further scar under my arm. Currently covered in little steri-strips, I am still waiting for the big big reveal. When I think of my mound, I don’t think of what I had, I think of what I have: my life. I am grateful to those surgeons who are both trained to take the cancer away and create something that means I won’t be afraid to look in the mirror for the rest of my life. Take that cancer!

In short, it’s less Frankenstein’s monster and more a new improved me.

I read a beautiful quote earlier: ‘Scars remind you where you’ve been. But they don’t have to dictate where you’re going.’ I’d like to amend it slightly: ‘Scars remind you where you’ve been and how hard you worked to get there. They don’t have to dictate where you’re going, but they can give you the strength and determination to make sure the path you do choose is a beautiful, interesting and inspiring one.’

So make today a day to be proud of all your scars. And, if you don’t have any, start living! 

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

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…

Breast cancer lesson number thirteen: Time is a great healer… and morphine helps too

So, Friday was an interesting day. It started in the darkness of the early hours with a short train ride and a relaxing stroll along the Thames. It finished in the darkness of the night with a bucket load of morphine, a dedicated nurse, a giant monitoring chart and a view of the river (along with the London Eye). It started out with the cancer trying to take charge. It finished up with an army of amazing doctors and nurses (ten in theatre alone) all determined to make sure the cancer didn’t stand as chance.

I am happy to report, there is life after surgery. When it comes to life in hospital, however, the day asleep on the slab was the easy part. I won’t sugar coat it. The last few days have been hard (very hard). I woke up in recovery and was in pain (and shivering uncontrollably). We knew the tummy tuck would be tight. It actually felt like my stomach would rip open if I moved. I lay in bed clutching it tightly and crying through the morphine. No one could help me. Not even Mr morphine and his magic cocktails.

As with everything, however, the writhing agony has subsided and I am now left with a rather trendy abdo binder corset holding it all in (not forgetting my friend the big knickers). My right arm is limp and swollen from the lymph node clearance, my four drains are down to two and still draining into sports type bottles (all held up in the most beautiful handmade drain bags in the hospital) and my body looks at bit like it has been savaged! (Tip for those about to go through this, there are very few dressings used in plastics, so you see pretty much everything, including the glue). But, you know what, the boob is alive (complete with a bit of stomach skin), the tummy tuck was worth it, and I am still me (just a more well-thought through version).

Time can do wonders to heal and erase the memories, but if you think hospital is the chance for a decent rest, then think again – even the bed is timed to move around, so when you think you’re comfy, it sets you off guard again.

Three days is a long time in body recovery terms – although you know you’ve already been here too long when they are struggling to find a vein (the good arm is now out of bounds for life). I won’t talk you through the tests, the hourly checks, the pain, the pills the detail of the flap that is now my breast (being referred to as the flap in bed 11 is a bit weird). What I want to talk about is the positive side and, most importantly, progress.

Here are the highlights and the I-cannot-believe-this-is-really-happening lights:

1) NHS mashed potato is still pretty special: not sure I should be ordering it for lunch and dinner, but when something is that good, it is rude not to. Not sure I’ll be going in for seconds of the milk jelly though.
2) The beds are alive: nobody warns you of this and it was the cause for some amusement when I got a bit worried and explained I thought the bed was eating me. I think the guy looking after me in recovery thought I was hallucinating. At least I have been burning a few calories from the mashed potato while sleeping. It’s a special mattress for preventing pressure sores. Just wish I could have a proper ‘still’ mattress now.
3) Some drugs, when flushed through a cannula, feel like they are flooding your hand. Again in recovery too, I screamed out that I thought I was leaking. The nurses looked alarmed until it happened an hour later and they realised what I meant.
4) The recovery room was like the stuff of dreams: this feeling had little to do with the drugs or the general anaesthetic and a lot to do with the fairy tale castle and doodles on the walls. If you’re wondering why, it used to be a children’s ward. I just thought they’d consulted the wrong decorators and were attempting to transport us far from our bodies.
5) Blanket-warming machines are a revelation: they look like glass fridges and they produce the most wonderful warm blankets for theatre. If only they were available on the high street. I would buy shares.
6) I think my flap might be pregnant: flap testing involves running an ultrasound probe over the breast to check for a pulse. It’s often disconcertingly loud and the heartbeat sound it produces makes you feel like there is more than just fat up there.
7) It is possible to eat a roast dinner with one hand: a lymph node clearance makes the arm feel a bit useless (and tingly), so being faced with a lump of meat in gravy for lunch yesterday was a bit challenging. Undefeated, I worked away with one hand and managed to complete the challenge in about 40 minutes. Those who know how much of a fast eater I am will find this amusing.
8) I have a new belly button: apparently it would be too far down south if my old one hadn’t been relocated. This should go some way to explaining just what they took out.
9) Showering in a chair is so relaxing: while my new body will take some getting used to, this new way of cleaning is completely therapeutic and comforting.
10) Expect the unexpected in the consulting room: when my surgeon arrived to talk me through the operation, he did some drawing to explain – on me. To say I was a human doodle by the end of it, is an understatement. Think my parents got a bit more than they bargained for.

The strangest thing about this whole experience is the fact I am under plastics. I didn’t meet my cancer surgeon at all on the day, the surgeons I do meet are focused on new boobie, the ward is all plastics (skin grafts and skin flaps) and no one has mentioned the ‘C’ word. I think people might actually think I am a little bit vain with my boob and tummy tuck. My surgeon joked today that people elect to have tummy tucks. I grimaced and replied: ‘I guess they usually have something to remove in the first place.’ Should have had just a few more cakes, although it is nice to think my boob is part Hotel Chocolat treats and part apple and banana cake!

The one thing I miss the most? Being able to make a cup of tea. Three cups a day just doesn’t touch the sides.

The road to recovery may be a bit bumpy, but it’s the right road and I am happy to be on it at last.

I’ll be out once I am down to just one drain. Watch this space and thanks for the messages of support.

Breast cancer lesson number twelve: The day before surgery does arrive… eventually!

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Five weeks, eleven appointments, five scans, thirteen needles, two biopsies, one arm measurement, one flu jab, seven hormone pills, one ‘dry’ January, two emotional freedom therapy sessions, one NLP masterclass, 11 blog posts, one trip to see Darius (sing in a musical not in a concert) and a lot of chocolate later, and it’s here at last! I am not sure I believe it.

So, what does the day before surgery really feel like? It feels real. As anyone who has seen me over the last two months will know, I look well, I sound well, I eat well – a bit too well. In fact, I can’t remember the last time I’ve felt quite this well. That’s why trying to convince myself there’s a serious illness lurking inside me, is no easy task. Usually someone anaesthetises you to get rid of the pain – not knocks you out to bring it on!

In my mind, I am going into hospital well to come out unwell. In truth, I am going in with a life-threatening disease and coming out with my life. I should be celebrating. After all, I get a tummy tuck thrown in, a brand new body part and permission to wear big knickers and sleep for a whole day (inducing sleep will be much-needed after all those sleepless nights). I’ve had worse Fridays!  

My inbox is empty for the first time in years, my blackberry is no longer flashing constantly and my to-do list is on hold. If it weren’t for this little thing called surgery, life would be pretty special. 

Ask me what I am worried about and you won’t hear the words pain, needles, tubes, drains or PCA machines (quite looking forward to being reunited with that temporarily). The fact I can visualise everything from the drip to the catheter makes it all feel a little less menacing. What haunts my nights and occupies my days, however, is the fact that when I wake up tomorrow, I will never be the same again. I can’t prepare for how I am going to feel and, for someone who prides herself in being prepared (I would even love to make a spreadsheet for my weekly food shop if I had the time), that’s a bitter pill to swallow. I am sure bionic booby and I will get on – I am rather fond of my seven-inch scar and 44 holes from my hip surgery. But, ask me what I fear and I’ll tell you: it’s the moment I wake up tomorrow and look down.

Up until now, the cancer diagnosis (strange as it may sound) has been life-enhancing. I have taken what positives I can from the situation and it has put my life (and my constant need to always be on the go) into sharp focus. I have seen more friends and family. I have laughed more than I ever thought possible. I have taken time for myself. I have read a book on a Saturday (although really need to finish Bridget now as the book is so big to carry around). I have cut my hair short. I have experienced criminal behaviour. I have restarted old conversations. I have cried tears of joy. I have seen the beauty behind life’s clouds. I have opened the door to bad weather and danced in the rain. It may be the day before surgery but I am smiling at the fact I am here on a Thursday in February eating chocolates with my parents (can’t remember the last time I saw them in February). I can honestly say that there is very little (if any) genuine sadness behind my smiles. For that, I feel like the luckiest unlucky person in the world. I have been selected for a life and body overhaul – and I am determined to embrace it with open arms.

All I hope is that when I look down at those scars (which will fade with time, massage and a bit of love), I am reminded not of the surgery nor the cancer that was once eating away at me, but of the fact every day can be bright, brilliant and beautiful and make you happy to feel alive. It takes work. It takes strength to escape the daily routine of life when there is no life-threatening reason to do so. But, if ever there was a time to channel that inner workaholic for myself, it is now – and for the rest of my life. Up until now, I have been convinced this disease will change me for the better. Only tomorrow, will I start to find out.

On a more important note, I hope the NHS mash potato is as delicious as it was (under the influence of morphine) six years ago. If it is, I really have nothing to worry about.

I am ready to start out on the road to recovery. First stop, kick this cancer right out of my body. Let battle commence!