Month: February 2014

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…

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

On By Jackie ScullyIn Breast reconstruction surgery5 Comments

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!

On By Jackie ScullyIn Breast reconstruction surgery6 Comments

Image

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!

Breast cancer lesson number eleven: There may be leeches!

On By Jackie ScullyIn Breast reconstruction surgery, Diagnosis and treatment planningLeave a comment

Ok, so what’s the word I was least expecting to hear today at my pre-assessment clinic? Yep, you’ve got it: leeches (followed swiftly by ‘glue’, ‘girdles’ and, that old favourite, the ‘catheter’!

You could be forgiven for thinking that the introduction of leeches into the breast surgery mix is a bit random. I certainly did. The good news is, the chances of meeting them are slim. The bad news is, they tend to come in pairs (or worse threes) if they do make an appearance.

A fascinating tissue reconstruction fact for you. New bionic boobie (sounds better than tummy fat shoved up top) gets checked every 15 minutes or so for around a day after surgery to make sure it’s still alive. If it’s looking a bit sick, in come Mr and Mrs (and possibly auntie) leech to have a play and help things along. This is a party to which only the boob gets invited, but I have been reliably informed that they will be monitored closely in case they fancy going travelling.

Today was fascinating in many ways. Here are some fun facts of the day:

1)    My lovely breast care nurse mentioned that, because the tummy is tight, it is likely I will be fitted with a band or girdle to keep it all in and make sure the ‘glue’ sticks. That and big knickers! Oh, cancer you are spoiling me.

2)    I am now a research guinea pig. I am participating in a clinical trial with the exciting title of: Multifrequency Bioimpedance in the Early Detection of Lymphoedema. This basically means they will measure the volume of liquid in my arm at certain intervals over the next five years to see whether or not they can spot changes that may lead to a rather nasty arm swelling

3)    I currently have 2.5 litres of fluid in my right arm. This means nothing (yet), but I thought it sounded like a lot of liquid for a little arm.

4)    They use a giant old-fashioned called a perometer to measure your arm. You even get to hold a plastic tool that looks like a cake polisher while you are holding it up in the air (oh the glamour). Note to self: when they say sleeveless top they mean a sleeveless top. The other test lasts about a minute and involves three stickers (one on each wrist and one on the right ankle) and a few electric wires. I was intrigued, as was the nurse getting a lesson in taking the test.

5)    Today’s blood test was completely painless. I didn’t even know when the needle had gone in. Amazed, I applauded her on her incredible skill. Her tip: she used to practise by sewing socks. A skilled phlebotomist, a seamstress and a thifty lady (who also had a similar bag to me) = my kind of lady!

Aside from the leeches and the well-sewn socks, I have established that there are many positives to being on the surgeon’s slab for about a day (beyond the induced sleep):

  • I will have a flat tummy by Saturday
  • I get breakfast, lunch and dinner in bed
  • I get a compulsory week of no exercise
  • Having the lymph nodes out on the dominant arm is actually better because you are more inclined to start moving it more quickly. Less fear of ‘robot arm’
  • There is a good month before I can do any heavy lifting (I would put kettles, groceries and hoovers on that list. The physio did suggest this could be a ‘flexible’ deadline if that helped me avoid tasks for a little longer. Lovely physio, nice tip!
  • I can wash my own hair
  • I probably won’t need to use a bedpan (quiet whoop)!
  • Some pilates moves are already part of the post-op exercise plan (albeit lighter than my normal Wednesday early morning reformer class.

Only real shame is the op part. Let’s not dwell on the seromas, nausea, wound infection or, best yet, dead boob!

Tune in for the post-surgery hospital ‘I-wish-I’d-known-that-before-I-went-in’ checklist!

Breast cancer lesson number ten: There is such a thing as a cancer survival kit

On By Jackie ScullyIn Breast reconstruction surgery3 Comments

Aristotle was a clever chap. In one of his works On The Heavens, he said: ‘it is not once nor twice but times without number that the same ideas make their appearance in the world’. Basically, if you think you’re being original, think again.

Every day, someone is taken into a room and told they have cancer. Every day, someone starts out on a journey, looking for their own ways to find strength and keep fighting. Every day, someone learns a practical tip that is new to them, but that has been discovered thousands of times before by other inspiring people determined to tackle this frightening disease head on. So, today, I want to share a few of the tips that have already made an appearance in my cancer story, so that you – or someone close to you – can get a bit of a headstart.

If every cancer sufferer were able to pass on just one tip to those newly diagnosed, there would be a few more smiles in those hospital waiting rooms. That’s my aim. I am a great believer of strength in numbers. Together, we may not be able to stop cancer affecting our loved ones (I think the experts are doing an amazing job of that). But, by sharing our knowledge, we can make the journey a much more comfortable and bearable one. Happiness is infectious, so help me start a pandemic!

The day after diagnosis day, I made a decision. I didn’t want pity. I didn’t want sympathy (although hugs are lovely). I wanted tips – and lots of them. Since then, I have been inundated with thoughtful messages. In just a few weeks, I have been inducted in the benefits of acupuncture, emotional freedom therapy, life coaching, mindfulness and massage. I have accepted every offer of help (NLP next week) and I feel great – in fact better than ever.

So, here’s the first installment of my cancer survival kit. One small caveat. This is not a substitute for a patient checklist and you may disagree with some of the below. This is me, just trying to be helpful and pass on the kindness of others. Don’t worry, I’m not on commission!

Work out what sends you to sleep now: ok, so this isn’t rocket science, but after having had an irrational fear of dying for the first five days after being diagnosed, I realised quite quickly that, without sleep, I was pretty useless. So here’s a quick tip for you. There are loads of apps and CDs out there to help you sleep, so start experimenting. I have already tried Patrick Browning’s apps as well as a great disk from a psychotherapist friend. I love lying in bed, focusing on different parts of my body, tensing them and releasing them (it feels like they are sinking into the mattress when you let go). Even if you can sleep now, it pays to be prepared.

Talking pillows are great: so listening in bed with headphones on is not great. I went to bed the other day, drifted off and was then jolted awake by a loud piece of music. That’s where a Sound Asleep pillow comes in. It’s a speaker, it’s a pillow, it’s a revelation. In short, it means I can drift off to sound of peaceful chants without Duncan hearing a word. A thoughtful gift from a thoughtful friend.

Protect that boob: I was amazed when a friend at work presented me with what looked like an oversized jelly bean. It was, in fact, a Tender Cush pillow to help me feel comfortable at night and sleep on my side post surgery. Of course, I haven’t put it to work yet, but it is so soft and should be pretty handy.

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Post-surgery bras aren’t just for those with a breast prosthesis: best get a specific recommendation from your breast care nurse, but I wouldn’t have known to ask if some kind soul hadn’t pointed it out. I went to Royce (shop online as the experience of shopping for post-surgery bras on the high street is quite disheartening) for mine and was quite taken with one that says it has healing fibres. I have heard that underwires may be out forever for those who have had reconstruction. Is that true? Can anyone confirm or deny? And remember no VAT to be paid on these beauties!

Buy big knickers: a DIEP surgery recommendation (as discussed in lesson x). They’re really big, they hold it all in. Let’s move on… No photographic evidence required.

Don’t forget to accessorise: I must confess, a bag for carrying around one of my four drains didn’t even feature in my initial hospital kit list. It was only when a friend asked me about them – and I then saw a lady in the hospital carrying one – that it got a look in. Imagine my delight when two handmade bags arrived through the post yesterday from a wonderful friend. The only trouble is, they are far too beautiful to waste on a drain!

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Lip balm and wet wipes are an in-patient’s best friend‏: standard stuff, worth remembering. Bit like preparing for a camping trip – just a lot less fun. No scent, no sting!

Power up: one worry I have is keeping my mobile phone charged when going in hospital. With my right arm compromised due to the lymph node clearance, I think turning around to plug in a charger might be a bit too energetic. Fear not, there are some pretty great external power packs on the market that will charge your phone many times over from the comfort of your bed. Mine has so many different phone and device connectors I reckon I could power the ward!

Reevaluate your wardrobe: apart from my coat and the odd shirt, most of my clothes involve some sort of body contortion when dressing. That’s why I’ve spent the last few weeks stocking up on new navy and pink items to help me feel nice – and not naked. If it zips up or buttons down, it’s in. I have also replenished my stocks of tracksuit bottoms, given most of mine are covered in paint from decorating last year. Not sure the nurses would approve of those.

Don’t be afraid to ask: whether it’s from a breast nurse, amazing charities, such as Breast Cancer Care and Macmillan or fellow patients, ask away! There are superb booklets on offer covering everything from fertility and chemotherapy to specific types of drugs. Macmillan also produce a great Feel More Like You booklet. You can order them online, so keep donating, so they can keep producing and posting them!

Ok, so this is not an exhaustive list, but it’s a start (there are plenty more, but don’t want to blow your mind too early on). Plus, I didn’t think it would be right to talk about health foods, when I am currently feeding my new boob (AKA the tummy) a lot of unhealthy things. Read it, share it and please add tips here if you want to pass on your great advice.

This my little way of giving back, before I get started. Thank you to all those who have contributed to the cancer survival kit so far. Let’s hope it keeps on growing.

Every cancer journey is different. But, chances are, someone out there has a tip to help reassure you it’s all going to be ok.

Breast cancer lesson number nine: Some tears are worth crying

On By Jackie ScullyIn Breast reconstruction surgery, Kindness5 Comments

I’m one of life’s criers. I shed tears at a screening of Cool Runnings. I well up on hearing the heartfelt stories on Surprise Surprise and X Factor (yes, I do realise I have admitted this publically!). Even reading sentimental verses on birthday cards in shops is enough to set me off. In short, leaving the house without a packet of tissues is a daring act.

For a sensitive soul who wears her heart very much on her sleeve, I thought a cancer diagnosis would be my undoing (and shares in Kleenex, my pension pot). But, I must confess, beyond the odd epic wailing sessions (the boardroom at work being a particular highlight on day 4), I have shed very few tears about the unfair situation I now find myself in.  

In fact, most of my tears are due to the fact I have been truly touched and inspired by random acts of kindness, thoughtful gestures and supportive messages. These are tears worth crying in my book.

Read the news headlines, and you could be forgiven for thinking that the world is a pretty dark place, scarred by death, disaster and destruction. Scratch the surface, however, and you will discover that behind every sad story lies real beauty and tales of love that will move even the strongest person to tears. The truth is, the world is full of wonderful people – you just need to know where to look.

These wonderful people may not stop the presses, but there are so many reasons (too many for an entire blog, let alone one post) why they should. In my life right now, they are my front page and my headlines. They are the soundtrack to each day, filling up my heart and my Blackberry with the most humbling words and gestures.

Kindness takes many forms. It’s a cup of tea from a busy nurse. It’s a knowing smile from a stranger across a waiting room. It’s a thoughtful note left on my desk. It’s a touching email from someone I once helped. It’s reconnecting with an old friend. It’s a tip about wigs from a client. It’s a colleague who prints out a diagram demonstrating how a plane stays in the air (see lesson number four to see what I mean). It’s a plant with kind wishes from New Zealand. It’s a sleep CD. It’s a complete cancer care kit from teams at work – everything from an inflatable bath pillow to an overnight bag. It’s an offer of help. It’s a chemo care box from my kind soul, complete with words of encouragement. It’s cake and tea in plastic cups at Sketch (plus a pretty exciting excursion to the toilets). It’s a four and a half hour bus ride for a hospital appointment. It’s ice cream sundaes and smiles. It’s a coaster, roses, books and cookie cutters. It’s a ‘like’ and a ‘follow’ on social media. It’s an impromptu blood test (sorry Duncan). It’s a knitted teddy. It’s a knock on the door on a Saturday morning. It’s curry, cuticle cream and good chat. It’s research completed by a friend. It’s handmade bags for carrying my drains. It’s wine at lunch time. It’s chocolate and homemade treats to fatten me up. It’s a charity run – or two. It’s a never-ending list of kind acts that makes me feel happy to be alive – and ready to fight.

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Sorry cancer, in the face of such kindness and generosity, you don’t stand a chance. There are many memories from this phase that I hope will fade. There are others I will want to cling to forever – and take forward with me.

I am not sure I will ever be able to thank you all for the kindness you have shown me so far – and I haven’t even been anaesthetised yet! But, I am determined to focus on getting better, so I can spend the rest of my life trying.

So, this is my shout out to all the nice people in the world. If you’re reading this, that includes you. Thank you for being part of this chapter and for making me smile (when I am not crying about how amazing you are). You know who you are…

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Breast cancer lesson number eight: Fashion has its place, just not in the hospital

On By Jackie ScullyIn Brighter Life List, Diagnosis and treatment planning, Reflections on cancer1 Comment

Dress with confidence and you will feel good. It’s a lesson I learned with my hip surgery, having spent months in black joggers and oversized jumpers. I didn’t want to look in the mirror, not because I didn’t like myself, but because the picture never changed. Not this time!

When I started this process, I promised myself I would do everything in my power to stay true to myself. That means bright pink tops, navy dresses, pink belts and matching ballet pumps. For those of you who know me well, you’ll know I am not the least bit vain – I painted my toes for the first time ever last year and it took me years to realise that green cords and a long brown jumper are not going to get you anywhere in publishing! I only decided to match my shoes with my clothes in 2009 (maybe I have said too much)!

When it comes to fashion – by which I mean dressing up not being on trend – however, it seems cancer has other ideas. Take this morning, for example. I selected a pretty navy lace top (a birthday present from my parents) for a fertility clinic appointment, so convinced was I that I would remain fully clothed throughout. Twenty minutes in and I was wrestling to remove my top so that the nurse could take more blood. Trust me, bending over while trying to get a top over your head when you can’t reach the button at the back, is not a good look. I resembled a magician trying to escape from a straightjacket – a fact that didn’t go unnoticed by the nurse who thought my determination to get it off unaided was hilarious. I am glad to say the top survived – but it was a close call.

The sad thing is, it seems one wardrobe malfunction is but the tip of the iceberg. Then there are the knickers. Recommended post-op knickers for those who are having the rather glamorous tummy tuck (or DIEP flap to be scientific) are big. And, by big, I mean HUGE! Bridget Jones would be proud. I was hoping my artificially flat stomach would stay in on its own, without the extra support!

Only piece of good news is that I can’t wear them when the two drains sticking out my stomach are still in place.

Let’s not forget the bras! As I am opting for immediate reconstruction, I must confess, I didn’t think I’d need a special bra. How wrong was I! While I admire the care and science that goes into creating post-surgery bras for women, I have to say, my heart sank when I went to a department store on Oxford Street yesterday to pick up a couple. For starters, you need to go up a back size because of the swelling – and no woman wants to go up a size in anything other than cup size. Visiting a lingerie department for a post-surgery bra is like going to a sweet shop and coming out with an empty paper bag. You feel special for all the wrong reasons and you generally don’t get lace or ribbon or silky bits. They also don’t come in navy or pink, which, as explained above, is just not part of the Scully colour palette.

The lesson here is, don’t go to the high street – shop online. From the sofa, it is easier to admire the craft and healing fibres without feeling like you’re missing out.  You are even exempt from paying VAT, which is a bonus (just make sure you call customer services to claim back if the option to remove VAT is not available).  I also have brand recommendations if you’d like them, courtesy of my lovely breast reconstruction nurse.

One interesting discovery in this rather unfashionable episode, was that around 80% of women are wearing the wrong bra size. Having discovered this fact, I promptly dug out the tape measure (useful bra fitting guide link should you wish to follow suit). I have been a 34B for as long as I can remember (even though my dress and top sizes have altered). Thankfully, I passed the test and have saved myself from the shame of having to admit to hospital staff that I had over inflated my assets.

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I am pleased to report, however, it’s not all small boobs and big knickers. Determined as I am to feel myself in hospital (after the morphine has subsided), I have splashed out on lovely nightshirts (not my first choice in nightwear, but if you ever need a button down shirt for easy access, I have some good tips), a soft dressing gown and fluffy slippers. I now also have a rather stylish selection of zip-up sweatshirts, which I think will be getting a bit too much wear post-surgery.

Cancer, you can have my right breast, but you won’t take my style – what little I have of it. I plan to dress to impress, even if it’s only for the lovely ward staff!