Tag: surgery

Breast cancer lesson number 40: Cancer treatment is like a punishing endurance challenge. Savour those checkpoints

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

For me, breast cancer treatment is a five-stage race. First, you lay down on a slab and get rid of the troublesome cancer. Stage one, tick (if we ignore the fact I have to get a little cosmetic adjustment at some point in the future). Next, you get to store some babies in the freezer. Stage two, tick. With fertility over, your veins get a high dose of body-killing (or life-saving) chemo drugs. Stage three, tick. Once your body has started to recover, you get a blast of high-energy radiation. Stage four, tick. Then, if you’re still standing, you say goodbye to daily hospital visits and hello to daily doses of oestrogen-blocking pills. The finish line is currently scheduled for some time in 2019, and I have no plans to go back in training after that! After that, the only races I’ll be tackling will be charitable ones!

Tomorrow is the end of stage two. That makes it a special day (one refreshing checkpoint in this epic race). With the end of stage three planned for mid-August, it will be a while before I once again feel like I am one stage closer to the home straight. Chemo is a long stretch and I know I’ll need all my energy just to get to the end.

I have to say, sitting here with a bloated stomach that makes me wants to live in the toilet, tomorrow cannot come soon enough. I certainly don’t think a body corset, tummy scar and enlarged egg-stuffed ovaries – combined with a functioning bladder and stomach – belong together. I feel like someone is bouncing on my stomach and there isn’t enough skin to go around. Starting to find the idea of a needle in my ovaries rather attractive.

What did I feel like after completing stage one? First, there was pain. Then, there was immense relief. I’d like to say I was dancing around my hospital bed. But, let’s face it, I could barely stand. How do I think I will feel if we are lucky enough to pop some embryos in a freezer bag? First, I will be happy that the baby back-up plan is in place. Then, relief that I can walk from the living room to the kitchen without needing a wee. (I also quite like the idea of a fridge that isn’t full of syringes and vials.) Neither of these sound like great moments of celebration or markers in history. But, when there is life at stake, you’ve just got to be happy you registered for the right race and are running in the right direction.

Cancer checkpoints don’t come along very often. When they do, whether you’re on morphine or Merlot, you’ve got to grab them, get the most out of them and use the happiness (or relief) they bring to take you forward into the next stage. I may be more likely to be raising a mug of tea than a glass of wine at the moment (last night aside), but I am determined to make sure each one of these stages does not go by unnoticed (I think a lot of people design a sign to mark their last chemo session, so that’s on the to-do list for stage three). You may lose a few consultants and nurses along the way, but that doesn’t mean there are any less people rooting for you to succeed. There are just a few less appointments to attend, a few less needles and a few less worries to occupy your fact-filled mind.

This is a race I will complete – and there will be a big smile waiting for me at the finish line (and probably one of the many bottles of engagement champagne currently gathering dust in the cupboard). I am not going for a personal best and there won’t be a medal at the end of it, but there will be life. I hope you’ll be there to cheer me home. 

Breast cancer lesson number 37: Be a kind stranger. You never know when you’ll need one

On By Jackie ScullyIn Breast reconstruction surgery, Chemotherapy, Happiness, Kindness4 Comments

If you’ve ever been at the receiving end of a random act of kindness, you’ll know that a little bit of thoughtfulness can go a very long way. Kindness is the gift it costs nothing to give and the mark it leaves often lasts a lifetime.

I’m amazed and humbled when I think of all the wonderful acts of kindness that have been gifted to me over the years. For example, I will never forget the lady in the bed opposite me when I was recovering from hip surgery. In the absence of a bed on orthopedics, I was sent to the oncology ward (maybe I should have just stayed there and had my boob off at the same time), surrounded by some people with just days to live. Unable to move properly, for fear of triggering the nerve pain in my hip, it was difficult to perform even the simplest of tasks. I remember struggling to reach my water one night, only to find the lady opposite (an elderly, frail and very sick lady) had got out of bed just to fill my glass. It may not sound like a grand gesture. But, to me, the stranger in the bed opposite, it meant everything. I was wheeled out of that hospital just a few days later. She never left the hospital again.

Roll the clock forward six years and I am still touched by the kindness of strangers. Whether it be the thoughtful Waitrose delivery man (who would restock my fridge if I let him), the nurse in recovery who extended his working hours just to make sure I was comfortable or the catering lady who slipped my mum a free lunch, it’s random acts such as these that really underline what beauty there is in the world.

Only last week was I reduced to tears by the kindness shown to me by a company called Bold Beanies (they make fantastic sleep hats and beanies to help with hair loss). I ordered one navy and one pink beanie and requested the words: ‘small boobs, big smiles’ be printed on each one. A few days later I received an email from the lovely Emilienne saying the designer had thought my slogan was so good he wanted to turn it into a logo! I was so thrilled with the results, and touched by the gesture. Certainly something to smile about when the hair starts to fall out!

Image

Of course, in each of the examples above, these wonderfully kind people probably guessed (or knew from the tubes and the morphine in the hospital) that I was fighting. Trouble is, it’s not always easy to know who might benefit from a smile and a thoughtful gesture. But, chances are, we’re all battling in some way.

Travelling to the assisted conception unit yesterday, I was reminded of the train journey I took to get my pathology results. Mum and I were sat facing an anxious looking couple who seemed miles away from the train carriage in which we were all sitting. I didn’t imagine I’d ever see them again and get to the bottom of their anxiety. Imagine my surprise, when I found myself sitting opposite them once more – this time in the breast clinic waiting room. You just never know. Everyone is fighting. Everyone is hurting.

To the untrained eye, when I’m travelling to hospital now, I’m just a fairly ordinary young person probably on her way to meet a friend and have a nice brunch in town. Look at my breast cancer pin, the fact I move awkwardly when I sit down and the fact I am guarding my right side and you might find the picture changes. At the moment, my illness is pretty much invisible. But, that doesn’t make it any less real or frightening.

We’re all familiar with the concept of giving back, but this is my little plea to ‘pass it forward’ too. If someone is kind to you, find a way to pass that kindness on – or better still, be the one to start a chain of kindness. It could be as simple as opening the door with a smile, offering your next delivery man a biscuit or giving up your seat on the train (I acknowledge that smiling on trains in London may get you arrested). Random acts of kindness can turn a grey day into a day to be remembered.

So, join me today. I want to be a kind stranger and make the world just that little bit brighter… one random act at a time.

 

How to make a drain bag
If you’d like some inspiration, my wonderful friend Fran, has typed out the instructions for making a drain bag. If you’re keen to dust off your sewing machine and join me in making a few, I promise to deliver them to the hospital. With just a few sheets of material (instructions below), you could make the life of someone newly diagnosed with cancer, just that little bit better. Please email me at Jackie_scully@hotmail.com, if you’re planning to pick up some thread!

Image

Instructions below make 40 (length) x 30 cm (width) drain bag with adjustable strap

NB: I use buttons for the adjustable strap but you could use any kind of attachment e.g. a buckle.

You will need:
½ metre pretty material
½ metre lining material
2 x big buttons
Matching thread

1) Cut out both materials 45 (length) x 66 cm (width), making sure you cut the edges off first (where the material is thicker and you see little pinpricks). Also, cut two lengths of the pretty material for the strap, both 10 cm wide (1/2 metre length).
2) Pin the pretty and lining materials right sides together. Pins should sit at 90 degrees to the sewing line. Sew both sides and bottom edge as one line of sewing 4/8 from the edge of the main bag material. Cut the corners a couple mm from the sewing line.
3) Pin the two strap pieces together along one 10cm edge – right sides together. Sew.
4) Turn the main bag material the right way round and iron (into the hem).
5) Iron the strap seam so it sits open.
6) Fold the main bag material inwards for the top seam (pretty material slightly higher than lining material). Iron and pin. Sew as close to the edge as possible.
7) Fold and pin bag in half with the pretty material on the inside. Sew bottom and side seams.
8) Turn bag right way round and iron.
9) Fold the strip of strap material in half (right sides together). Pin and sew. Turn back the right way round.
10) Fold the end edges of the strap in to form seams and iron. Sew as close to the edges as possible.
11) Pin one end of the strap to the inside of the bag. Use a strong zig zag stitch to sew a square around the edge of the strap to attach it to the bag.
12) For the other end of the strap, you need 4 button holes roughly 10 cm apart (depending on the size of your buttons).
13) Sew the two buttons 10cm apart on the main bag.
14) Done!

Happy sewing!

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!

Image

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 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.

Image

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 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 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 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.

Image

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!