Tag: Jackie Scully breast cancer

Breast cancer lesson number 62: How to bear losing your hair

On By Jackie ScullyIn Chemotherapy3 Comments

Today was supposed to be a quiet day. Working at home with just a cup of tea for company, the day was there to be filled with sunshine and strategic thinking. Turns out cancer had other ideas. Today is a day I will never forget.

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I thought hair loss would be a gradual thing. There is, however, nothing gradual about scratching your head while pondering over a paragraph of text, only to be greeted by a clump of the stuff. And we certainly won’t be dwelling on what happened when I went to the toilet.

I thought I would find it amusing in some way. After all, while I had started to think it might never happen, I knew deep down it always would. I thought I was prepared for the emotions that came with it. But, the truth is, you can never really prepare for something like this. When hair you have known and loved is no longer on your head, but in your hand, there’s only one thing to do – have a good old cry.

As soon as the tears subsided, it was time to get practical. My hair (or what’s left of it) is too short to donate (if you’re about to go through this and have more than 17cm of hair, I would urge you to follow in the footsteps of this inspiring young woman Connie, who has just donated some bunches to charity). But, given I am not one to sit around waiting for something to happen (and I certainly don’t want to clog up the sink), I have already made my decision. It’s time to take back the control. It’s coming off, at 12.20pm tomorrow!

So, what started out as a quiet day at home is now the last day pixie and I will be together for quite some time. I think the hardest part is knowing that my hair may never be the same again. I’m not afraid to lose it (although there are a few marks on my head I am not particularly excited to see). I’m just worried that what grows back may be a new version of me that I may not like straight away. It may be better. It will probably be different. It’s an adjustment I never thought I’d have to make. And, now I am staring at a spring/summer season of baldness, part of me wishes I could just grab it from the sink and stick it back on. I’ve done the scarf shopping. I just didn’t really think I’d need to wear the scarf.

Every side effect that suddenly appears is a rather harsh reminder that, while on active treatment, you can’t get comfortable. You have to be prepared. Because, if you’re not, something will creep up and try to steal your happiness when you least expect it.

Tomorrow is head shaving day. Tomorrow I lose a little bit more of myself to cancer. Tomorrow is the day I may also be introducing my alter ego Suzie to the world (or not, so will be packing some fabric-based alternatives just in case).

Of one thing I am certain. With a trip to the office scheduled for the afternoon, tomorrow is going to be interesting! Wish me luck.

Think Duncan and I might be raising a glass to my mousey locks tonight! 

Breast cancer lesson number 61: Great care comes from people, not bricks and mortar

On By Jackie ScullyIn Chemotherapy, Reflections on cancerLeave a comment

‘Never judge a book by its cover’ is a phrase that could easily apply to hospitals. With perfectly painted walls and shiny equipment often comes an expectation that the care will somehow be better. But, the truth is, when it comes to treatment, it’s the person administering it (and of course the treatment itself), and not the room in which it is administered, that really matters.

Don’t get me wrong. I smiled when I saw the comfortable chemo recliner chairs (although I never did work out how to put my feet up) and the bright cancer day unit suite with its great views. And, I’m not sure standing room only is the right look for a cancer clinic. But, when I think back over my time in hospitals over the years, it’s not the flashy equipment or the chipped paintwork I remember. It’s the people – and usually the ones that have made me smile.

It was my faith in the team treating me that made me put people before private cover after my initial diagnosis. My Breast Care Nurse admitted that the only difference between private and NHS treatment for cancer was the environment and not the speed at which things happened. In fact, if I had called in my cover, there would have been a delay while the diagnostic tests were redone and the diagnosis reconfirmed. I liked my team, I liked the way they treated me, and the blend of kindness and humour that worked well with my temperament. I wasn’t going to trade that in for a private room and artwork on the walls. Looking back now, I know I couldn’t have made a better decision.

It’s not often I leave hospital with a huge smile on my face (just doesn’t feel appropriate on most visits). Today, however, I did. Admittedly, this was, in part, due to giant carrier bag of drugs I had managed to secure for myself at my oncology appointment to help control the side effects from chemotherapy (never before have I been so excited about getting mouthwash on prescription). But, it was really down to the kindness and care shown by those around me – from the smiling barista at the café to the warm receptionist at the Cancer Day Unit.

I started the day with an early-morning reflexology and aromatherapy massage session courtesy of Dimbleby Cancer Care, a free service designed to offer support and care for people living with cancer (be that patients or family members). I don’t think I have ever started the working week by being coaxed into a state of relaxation and covered in a thin layer of lavender oil. It was amazing as both a source of escapism and a chance to chat to the lovely lady rubbing my feet and back. Instead of lying back and closing my eyes, I quizzed her on everything from her nursing past to her experiences and downloaded all my latest recommendations (from bold beanies to PICC line covers). The best part? It wasn’t the wonderful scent of the oil, the free bolster cushion (for extra PICC line protection in bed) or the fact that my back knots almost melted under the pressure. It was the moment at which she said she thought I was an extraordinary person. I’m not sure my Monday mornings will ever be as soothing again.

An hour later, I was sat in front of another nurse experiencing the easiest blood test of my life thanks to my trusty PICC line. Little did I know when I sat down for my ten-minute appointment that we’d cover everything from her singing ambitions and band to her love of children’s medicine and shift-based work. It was nice to feel like I was chatting to an individual with hopes and dreams rather than a lady in a blue dress with yet another syringe of saline solution.

Next stop, the oncologist. Three weeks ago, he told me he would be behind me 110%. And, true to his word, he was. The appointment was less about having a nice chat and more about him furnishing me with the contents of a small pharmacy. With extra Domperidone (bye bye nausea), Zoladex, Corsodyl and Difflam, plus soluble paracetamol and codeine (to experiment with as a mouth rinse because he’d seen it work before), I feel ready to tackle chemo 2. Even the oncology receptionist wanted to add in a mouth ulcer-related recommendation when I popped back to get the prescription adjusted a few moments later.

Finally, there was the smiling man at the pharmacy desk. He took great delight in both booking me in early (while I popped back to the clinic to amend my prescription) so I wouldn’t have to wait, and then walking me through my medical goodie bag. Service with a smile is often hard to find in the capital, which makes the experience even more satisfying.

I couldn’t describe the contents of the oncology consulting room, the massage seat, the pharmacy or the blood test cubicle in any great detail. That’s not because I’m not observant. It’s because, when the care is brilliant, there really is nothing else to see.

So, if you ever find yourself looking up at a tired hospital block, think not of the peeling paintwork, but of the people inside willing you on. For when you close the consulting room door one last time, it will be the kindness of those caring for you – rather than the chair they sat on – that will stay with you forever.

Breast cancer lesson number 60: Get your head in gear (but only with accessories that suit your face shape)

On By Jackie ScullyIn Charity, Chemotherapy3 Comments

I have a head for hats. This rather exciting discovery, made in a hospital consulting room of all places only a few days ago, is not one I think I would have ever made if it hadn’t been for a bit of chemotherapy-induced hair loss.

I think it’s fair to conclude ­– especially after revealing my current choice of underwear in lesson number 59 – that I am not a fashionable woman. Yes, I have followed some basic styling rules in recent years, I keep to my ‘summer’ colours and now own such things as matching accessories (I even have a copy of the What Not to Wear rulebook somewhere). But, it took me about 26 years to realise that I don’t look good in black and that necklaces aren’t just for special occasions. You wouldn’t believe I used to write a blog for a model!

It will come as no surprise for you to learn then that I have always been pretty unadventurous in the headwear department. Apart from a regular haircut (that has only recently developed into something other than a bob), my head usually gets treated to a bobble hat on Bonfire night and then a series of fluffy numbers throughout the winter months. And, if it’s very lucky, the occasional swimming cap (although I think my open water swimming days might be on hold for some time).

Faced with a spring/summer season of baldness, I jumped at the chance to attend a Headstrong session. Set up by Breast Cancer Care (although I think anyone undergoing cancer treatment can book one), these sessions are designed to help people make confident choices about everything from hats and headbands to scarves and hair accessories. Beyond the odd bit of fake fringe, the emphasis is less on hair (by which I mean wigs), and more on the fabrics and styles to help turn hair loss into a fashion statement.

I wasn’t sure what to expect as I loitered in the Cancer Day Unit waiting room. I certainly didn’t expect Breast Cancer Care’s answer to Trinny and Susannah and one of the most enjoyable experiences of my entire cancer journey so far. Armed with a cup of tea (naturally), I sat back in front of the mirror as two wonderful ladies tied knots on and around my head and dressed me in blue florals, leopardprint and velvet bows. We started with headscarves (I got a beautiful pink and white polka dot one with matching grey headtie to take home as a free gift), before moving on to scarves with hidden caps underneath, turbans, berets, beanies, soft hats, sleep caps, baker boy caps, bucket hats and pearl-effect hairbands. We covered all the seasons in about half an hour.

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The whole appointment was an entertaining voyage of discovery. For example, I learned that a wig cap is nothing more than a popsock for your head. I had visions of it being more a like a latex swimming cap, but no! I now know I look like a gnome in a turban and a milk maid in an eyelet scarf. Baker boy caps and bucket hats are a must for the summer and, when I put a Mandy hat on (one of my favourites), I look like an extra in a Poirot movie. Basically, I was just born in the wrong decade. And, it’s amazing what a thin headtie can do to dress a short pixie hairdo.

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With a couple of summer hats and headties on order – to add to my small pile of scarves and soft hats – I think I am ready for SS14. Maybe this will be my summer of style (if we ignore the fact I am highly likely to be bald for most of it).

Please don’t think I am cheating on Suzie (see lesson 57) by stocking up on soft fabrics and straw bucket hats. But part of me just thinks if I’m going to lose the lot, why try and cover it up with an acrylic equivalent (other than for relevant meetings of course)?

So, if you’re about to embark on chemo and would like a whistlestop tour through the wonderful world of scull caps, jersey turbans and faux fur hats, I would book a Headstrong session as soon as you can – and certainly before you start shopping.

Cancer may be going after my hair (or so my hairbrush tells me), but it’s not going to take my confidence with it!

Breast cancer lesson number 59: Never underestimate the power of a good pair of knickers!

On By Jackie ScullyIn Breast reconstruction surgery5 Comments

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Before my tummy became my boob, I had only ever bought one pair of magic knickers (by which I mean big, tight, figure-sucking Bridget Jones knickers not magical figure-adjusting knickers). I think it would be fair to say I had such limited success with the cycling-shorts-masquerading-as-underwear item, we had about one outing together. While it did eliminate certain troublesome areas from my waistline, it just repositioned them to both above and below said undergarment. Let’s just say, your typical body isn’t usually designed with a trunk that resembles the Scottish Highlands.

Having been briefed on the benefits of support knickers to help my tummy enjoy its new (if only temporary) life as an artificially-flat stomach, I approached my knicker shopping with some trepidation. These knickers are big and, if they are to be effective, don’t really have much wiggle room. They also tend to come in the imaginative black, nude and white range, meaning pink and navy don’t even get a look in (gap in the market methinks).

I must confess, I didn’t enjoy packing them in my hospital bag or putting them on at first (it took two of us to yank them up anywhere close to my stomach scar for the first five days). But, before I’d even left the safety of the hospital bay, my mum was already primed to pick up two more. Trusty old M&S. You know your underwear!

In the early days of my post-surgery recovery, the combination of big knickers and a body corset became a little bit too hot to handle (so much so, there were some rather unpleasant side effects. I will spare you the details). It felt more like a heat wrap than a support system and, in the end, the knickers had to go back to the drawer. With the corset firmly in retirement, however, the knickers are back in action and coming into their own. That is, when I remember to wear them.

The trouble is, when you have a lucky knicker drawer, it’s hard to get excited about pulling on a pair of nude cotton body suckers that don’t have quite the same effect. (Come on, I know you all have something lucky lurking in your drawers). It may sound odd, but I have knickers that have changed the course of a day by just being present. There is a priority list (mostly navy and pink) and, should one pair have to be recycled as a duster, the parting is like that of two good friends saying goodbye. My knickers have won pitches. My knickers have experienced great holidays. Of course, they didn’t prevent the cancer diagnosis, so maybe it is time to invest in some new ones!

Yesterday was a lucky knicker day – and it was a good day. It was also a day that introduced me to a quite unexpected nemesis: the stool. After an enjoyable session of work and a lunchtime visit from a good friend, I decided to brave the city centre for a meal. Aware of it being low immunity week (7-14 days after each cycle your white blood cell count is at its lowest), I diligently googled the restaurant and checked for illness in the group, before setting off on the train. (Duncan did point out that he was amused at my checking for illness, when I didn’t think twice about getting on a train, but I did argue that I would move if I spot a coughing commuter.)

On the chemo-related front all went well. Even the food was conveniently cut into small pieces, so the fact that I can still not open my mouth wide enough to eat anything larger than a cherry tomato, went largely unnoticed.

It was only after moving downstairs to the cosy bar area that it hit me. My scar had been rubbing against my jeans for a good few hours. While I look normal, beneath my clothes, my body is still hurting and crying out for a comfy sofa. It suddenly felt quite phased by the prospect of a stool. All I can say is beware the backless chair. It may not look menacing, but when your stomach muscles are still coming out of hibernation, sitting up straight is a workout. 

It wasn’t long before I started to feel quite naked without my magic knickers for company. It wasn’t long before I was back on the sofa, trapped back in my body suckers once more. I’m writing this with the black cotton tugging at my tummy, and I couldn’t be happier.

Next step is trying to turn a pair of these beauties into lucky knickers. Could a nude pair become my new pitch-winning panties? Bridget Jones would be proud.

Breast cancer lesson number 58: If in doubt, just ask. Kindness is never hard to find

On By Jackie ScullyIn Chemotherapy, Happiness, Kindness3 Comments

Cancer has done one thing for me for which I will be forever grateful. It has restored my faith in human nature and forced me to not just see and appreciate, but actively look for the beauty in others.

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In lesson number nine, I talked about the fact that kind people rarely make the headlines, but that if you looks beyond the stories of sadness and destruction, you’ll find a real beauty that will move even the strongest person to tears. I am delighted to report that nearly three months after my initial diagnosis, these people remain my front page and my headline news.

I was reminded of this only yesterday, when I returned home from hospital to find a parcel waiting for me on the doormat. It had come all the way from the US and it contained a creative solution to a PICC-shaped problem.

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Anyone who has seen the picture accompanying lesson number 48 will know that a PICC line is basically a piece of plastic tubing poking out of my left arm. Yes, it’s practical, yes it’s clamped into position with another piece of clinical-looking plastic and no it doesn’t actually bother me (except in bed when I try to sleep on it).

The trouble is, I think it bothers everyone else. It certainly is no oil painting and Duncan won’t even let me show him the tubi-grip style bandage protecting it. In fact, I had a few messages from friends telling me they couldn’t even read that day’s post because the photo looked a bit menacing. While I am fond of my pink cardigans, I’m not sure I want to wear them all summer.

So, what can turn my patient-looking arm into something a little more palatable? The answer, even if you spend hours diligently googling, is not very much. If you want a radioactive-style armband for the shower (see lesson 51) or a waterproof swimming cap cover, you’re in luck. If you want something made out of fabric that looks more like an iPod holder sleeve, you won’t get far.

Enter Courtney, otherwise known as Riley Jane Designs. This wonderful ER nurse from the US makes beautiful PICC line chemo cuffs. Having experimented on patients to get the design just right, she has been shipping them across America in an attempt to bring a splash of colour to the arms of those undergoing treatment.

That is, until now. Unable to find a UK equivalent, I contacted her on the off chance she might either be able to make some for me or send me the pattern so I could have a go myself. Within hours she had replied. Within days she had bought the material and just one day after supplying my arm measurements, they were packaged up and travelling across the Atlantic to my doormat. She didn’t know me at all. She didn’t question why I needed one. She just picked some fabric and, in so doing, made my day. Goodbye tubi-grip and hello handmade chemo cuff (they are reversible too, so with two cuffs, I get four different styles to choose from).

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Courtney is a beautiful person and all I hope is that, every day, someone reminds her of that fact. Thank you for being a kind and thoughtful stranger. You make the world a beautiful place just by living in it.

So, this is my little way of reminding you to seek out and thank the people who bring happiness and a smile into your lives.

Kind people matter and they shouldn’t be allowed to forget it.

Breast cancer lesson number 57: How to keep your hair when all about you are losing theirs

On By Jackie ScullyIn Chemotherapy2 Comments

Cancer opens doors to rooms within hospitals that you would never know existed. Tucked away in the Orthopaedic Centre, with a corridor for a waiting room, the Orthotist’s office is one such place.

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Such was the secretive way in which this appointment was booked in the first place – the man who left a message on my phone requested I come to ‘patient appliances’ for a chat – I wasn’t even sure it existed myself. Why should an NHS wig referral appointment be surrounded by such mystery? And should a wig really be categorised as an ‘appliance’? Most appliances I know come with a plug, not shampooing instructions.

Sat next to a man with a walking stick, I started to imagine what might happen behind the appointment room door. And, I am rather amused to report that I will actually never know. This is not because I missed the appointment, but because my session happened with a wig fitter in the end, not the elusive ‘Orthotist’, in what I can only describe as ‘the wig cupboard’ next door.

The wig cupboard was like a hairy version on Narnia. Packed away in this little room were piles and piles of acrylic beauties waiting for their turn on my head. Having parked myself in the hairdresser-like chair, it hit me that I hadn’t really considered what style I might like to replace the little pixie to which I am now rather attached. Of course, Duncan requested a long, brunette style. (Not sure now is the time to request an upgrade that is not even close to my original colour or length, but you’ve got to admire him for trying!).

I needn’t have worried. A quick flick through the catalogue (NHS wigs may be free, but they are actually provided by a private company, so are great quality), was drawn to a pixie-equivalent cut in a spring honey colour. Her name is Suzie and I think I like her! She only needs washing once a month (with Johnson’s baby shampoo) and, apart from the fact she is very hot when combined with my full head of hair and a wig cap, I think we might just get along nicely.

I love the fact all wigs come with a personality. My head was turned by Faith, and I thought Sylvia would be worth a go, but Hayley, Kirsty and Linda didn’t get a look in. Maybe Suzie should become my new alter ego, not just my bald-headed disguise?

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Just for Duncan, I did try Brunette Scully for size (I am a bit shallow though as I dumped her without even asking her name). I am not sure the dark-haired look is for me, but am happy to experiment over the coming months. If you have any suggestions (pink, blue or otherwise) please do post here. I am only planning on going through this hair loss chemo thing once, so I may as well make the most of it.

So here is Suzie. Blink and you might not think she is anything other than a slightly longer version of my current cut. I need to play with the styling, but she’s pretty convincing for a bit of acrylic.

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I’m not worried about losing my hair (although I think I would be slightly alarmed if it starting coming off in the middle of town). I’m planning on embracing my baldness and making every day a mini-makeover day, with scarves and hats to match. But, for that one day when I might just want to look in the mirror and escape the thought of the chemotherapy drugs running through my body, there’s Suzie. And just knowing I have an alter ego to rely on makes me smile.

The big question is, will Duncan know the difference when he returns home from work this evening?

Breast cancer lesson number 56: Try not to bite off more than you can chew (literally!)

On By Jackie ScullyIn Chemotherapy4 Comments

Anyone who has ever joined me at the dinner table will know that, when it comes to food, I like to eat ­–­ and preferably fast. I love nothing more than spending hours in the kitchen preparing a freshly-cooked meal, only to spend about five minutes inhaling it. I know it’s not good for digestion, but a clear plate and a satisfied stomach are certainly good for the soul.

It will come as no surprise then that many of my pre-chemo fears were food related. What if I can’t taste anything? What if I lose my appetite for the first time ever? What if I hate the smell of cooked food? What if I have to live on a diet of pineapple chunks and ginger biscuits for five months? In the food department, I thought I had all food fears covered. But, it seems I may have missed one. What if I find it hard to actually eat?

While I am delighted to report that both my portion sizes and my appetite have not decreased, the size of my spoon has! Thanks to the lovely chemotherapy cocktail, my mouth has been slowly filling with ulcers since the weekend. Now, one side of my mouth is angry and inflamed, leaving me with a hole the size of a teaspoon through which to pass any tasty treats. Eating a beef and prune casserole and rice dish with a teaspoon is not to be recommended. Soaking your cereal in milk until it ressembles pulp just so it will slip down, is not to be recommended. I have heard of savouring your food, but 45 minutes to clear a plate, is tortuous, not tempting.

I know what you’re thinking. She doesn’t blink at the prospect of having her tummy cut open, but give her a mouth ulcer and she doesn’t know what to do with herself. It does sound rather insignificant, but I can assure you, it is anything but. One of the hardest parts is knowing that, when you’re recovering from surgery and recovering from chemo, meal planning isn’t just something to do, it’s the highlight of the day. Now, even comfort food isn’t comforting!

Having struggled on with a combination of Corsodyl and Bonjela for days, this morning I was beaten by a blueberry (and it was such a juicy-looking blueberry too). It was at that point that I decided to go to the dentist for something other than my bi-annual check-up (another first I hasten to add). And thank goodness I did. While it seems the Bonjela was tackling the mouth ulcers, it was also damaging the skin wherever it went, leaving my mouth nice and raw. I am a big fan of this little blue tube and its magic ulcer-removing properties, but apparently chemo isn’t. It has therefore been relegated to the bathroom cupboard and is to be replaced with warm water rinses, more Corsodyl, lots of fluids and sugar-free gum.

Sat here willing my mouth to heal and trying not to think about the prospect of eating tonight’s seabass with a teaspoon, I have two regrets. The first? I wish I’d paid a bit more attention to the useful ‘Mouth care during chemotherapy’ guide (click here for lots of top tips) I was given (not that it banned Bonjela, but it did advise against certain triggers like acidic drinks). The mouth is a side effect hotspot, because the cells in the mouth are fast-growing. Chemo drugs like fast-dividing cells, whether they’re cancerous or not. And the second? I knew I shouldn’t have had those salt and vinegar Pringles on Sunday night (it was like eating glass).

At least the dentist was free (and she even shaved my teeth slightly as it looks like I’ve been chewing my gums too). I just wish she hadn’t reminded me of the need to stay away from spicy food. When your palette is muted from the drugs and everything tastes a little bit bland, there’s nothing like a bit of hot chilli powder to spice things up. Chemo obviously doesn’t like to factor the word fun into its regime! 

Don’t worry! I would still be smiling if it didn’t hurt so much. Maybe this is life’s way of punishing me for more than three decades of fast eating. I would like to strike a deal with the chemo drugs (in time for cycle 2). I will use more mouthwash, eat less salt and enjoy every mouthful from this day forward, if I can have my mouth back please! After all, Seabass really should be eaten with a fork, not a teaspoon!

Time to bring out the homemade ice lollies methinks… 

Breast cancer lesson number 55: Celebrate your independence day!

On By Jackie ScullyIn Breast reconstruction surgeryLeave a comment

Naughty right boob wasn’t the first thing on cancer’s hit list after diagnosis day. Cancer started with my keys. Three sets to be precise (on one giant keyring).

The first, my work keys, were handed over when I realised I probably wouldn’t be opening up across town at 8am any time soon. The second, my car keys, were wrestled off me when it became clear tummy tucks and emergency stops were not particularly compatible. And the third, my house keys, were surrendered when, on 21 February, I travelled to hospital knowing I wouldn’t be coming home that night.

I have always felt comforted by a heavy set of keys (even though Duncan thinks they make me sound like a prison warden). With keys, comes independence. And, with independence, comes happiness. Of course, it didn’t take long to regain control of my own front door. But, my keys have been pretty light of late as cancer has tried its best to ground me.

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Yesterday, at my six-week post-surgery check-up, I took one giant leap away from cancer and towards independence. Impressed with the way in which my body had risen to the healing challenge, the surgeon declared that – providing I could do an emergency stop – I was fit to drive. I also got permission to have a bath, have a massage (to help the scarring) and explore non-wired (but not post-surgical) bras. As appointments go, this was pretty exciting.

Expecting to see one of his team, rather than the surgeon himself, I was delighted to find him in the consulting room waiting for me. After quizzing me on just how ‘tight’ the tuck was (the answer being ‘very’), he smiled and explained that, had he not worked for a while in Taiwan and seen lots of really slim women recover well from the surgery, he probably wouldn’t have attempted it. All I can say is, thank you Taiwan!

I had to laugh when he congratulated me on my healing abilities (he said he just had to do the mechanical bit). I am not sure I will ever believe him that watching box sets, reading books, writing blogs, taking walks and doing stretches is as amazing as microsurgery, but when you’re topless on yet another hospital couch covered in angry-looking scars, any compliment is nice to hear.

It was a great feeling being able to thank my surgeon for helping save me that day back in February. It was also a great feeling knowing that with every appointment and every day that passes, cancer is continuing to lose its grip. It took my house keys. I took them back. It took my car keys. As soon as I get home to my car at Easter, they’ll be coming back too. And, one day this year, I will be back in the office opening up at 8am… or maybe 8.30am :-).

Breast cancer lesson number 54: Be yourself, not a science experiment

On By Jackie ScullyIn Chemotherapy3 Comments

If philosopher Francis Bacon had been forced to undergo a course of chemotherapy treatment in his lifetime, I believe he may never have penned the immortal words: ‘knowledge is power’.

Never one to shy away from polysyllabic medical terms and textbook-like content, I prepared for this five-month stretch of my treatment in the way I would a school exam. Chemotherapy is, however, one aspect of my treatment about which I wish I knew a little less.

The Breast Care Nurse was spot on when she handed me the mandatory chemotherapy booklets and compared the reading experience to that of a examining the leaflet that comes with a packet of paracetamol. The trouble is, if you present someone (on more than one occasion) with an eye-watering list of side effects, they will wake up every day after starting treatment, expecting something to have fallen off.

It’s four days after FEC round one, and I am delighted to report that nothing has fallen off. I’m still pretty much in tact. The pot of steroids is empty, the anti-sickness pills are back in their packets until round two and the only unusual turn of events is that my house looks cleaner than has done since we moved in. Who would have predicted that six syringes and a bag of toxic drugs would have given me the desire to clean not only the kitchen floor, but the bedrooms and the fireplace too?!

Why is it, then, that I still feel a bit like a science experiment, being examined in my very own Jackie-sized petri dish? Every morning in the shower, I tug at my hair to make sure it’s still there. I count the strands left behind on my hairbrush. I stare down the toilet analysing everything that passes. I take pride in commenting on the lightening of my pee. I diligently touch up my dark nail polish. If my eyes water as I eat dinner I blame it on the chemo. I think too hard about the importance of an itchy ear. And, my skin is so well moisturised, I’m surprised I don’t slide out of my clothes.

Far from making me unwell (yet), chemo has successfully managed to magnify my imperfections (imperfections I probably had before the drugs went in). I now feel the urge to discuss every bit of my body. But the truth is, apart from a mouth slowly filling with ulcers and the odd taste change, my bodily functions are not particularly exciting. To be honest, you probably have more noteworthy activity in your own toilet bowls. Even the dreaded constipation/diarrhoea dilemma (is it staying in or running out?) is a bit of an anti-climax. I’d find reporting on a cold more exciting.

I think mum and Duncan are still expecting fireworks. Part of me is still expecting fireworks. Admittedly, there are 17 weeks left in this drug-fuelled challenge. But, if the last few days are anything to go by, the only explosions we’ll be seeing this year are the ones in the sky on November 5.

So, my advice to anyone currently preparing for chemo is this: take the leaflets, read the leaflets and then forget the lot. Information is not your chemo buddy. Get a thermometer and some anti-bacterial hand gel and don’t worry about your skin flaking off. Enjoy every day and trust your body – not a list of symptoms – to tell you if it needs a bit more TLC. Life is way too short to waste time starring down the plughole. I found it so tedious, I ended up attacking it with some drain unblocker (oh, thank you steroids for this temporary cleaning high)! 

You wait. My hair will start falling out now… 

Breast cancer lesson number 53: There is a time and a place for playing the cancer card

On By Jackie ScullyIn Reflections on cancerLeave a comment

Every patient facing a cancer diagnosis gets a card (I like to think of it as the cancer equivalent of Monopoly’s ‘get out of jail free card’). It’s a card that when played too often can all too quickly become meaningless and frustrating. But, it’s also a card that, when played tactically, can open doors and make things that otherwise seemed impossible, suddenly very possible.

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Up until now, I have been reluctant to call in the card. I don’t want to scream and shout and parade my illness in a way that makes people uncomfortable. I just want to be me. While there have been a few notable exceptions – 95% of which involve couriers and delivery drivers, absurd delivery windows and strange demands ­(the thought that someone might actually dismantle my new kitchen table if it wasn’t delivered on the day of an important hospital appointment being one) –­ my card is pretty clean (and my conscience too).

That is, until today. Today I needed the card and I was more than happy to play it. Having had another steroid high of a day (yes, beyond a constant morning mouth feeling and strange taste sensations, I am doing pretty well after my first bout of chemo), mum and I decided to catch the boat from Greenwich into the city for a lovely long walk along the river. The sun was shining and it was wonderful being carried along by the crowds. It felt normal and we felt normal. It wasn’t long, however, before we realised there was something missing. Two little white anti-sickness pills!

Having experienced a nasty helping of nausea on Wednesday night, these were two pills I wasn’t going to miss. The trouble was, time wasn’t on our side. When we arrived at the jetty to catch the next boat back we were told the boats were fully booked for the next hour. With the memory of Wednesday still firmly imprinted in my mind, we aborted plan a) (quietly sit and wait) and opted for a more assertive (while still pleasant) plan b).

As soon as the words ‘cancer’, ‘chemo’ and ‘pills’ passed my lips, we were escorted to the nearest seats and looked after my a lovely chap in a bright orange high-vis jacket. He squeezed us on the next boat as a ‘priority case’ and we got back just in time for me to take the drugs. I will be forever thankful to this tall, dark, bright-orange clothed man and am now looking forward to – rather than dreading – the smell of sausage casserole filling the kitchen.

It may seem like a small incident, but that moment taught me the real power of ‘playing the card’. I felt weirdly untouchable and important. When I had actually got over the guilt of knowing it was my own fault for forgetting the pills, however, I also felt a little sad. It’s rare that I am reminded of the seriousness of the cancer that tried to take my life. The truth is, you don’t have to be being treated for the illness to know just how scary the whole thing is. When cancer comes into play, everything feels like a race against time. Trust me, it’s a powerful card, and it’s one I hope you’ll never have to play.

There was another reminder waiting for me at home of the doormat – confirmation of my histology results. For the first time, printed in black and white were the words: ‘multifocal grade 3 invasive pleomorphic lobular carcinoma with admixed LCIS’. As well as my dominant tumour, my naughty breast was also filling up with LCIS (lobular carcinoma in situ). With the LCIS and the invasive mass, the total tumour measurement came to a total of 60mm. Add in the lymph node involvement and that puts me in the stage 3 camp. High-grade, aggressive, and not very fun. The good news? It was stage 3 (click here for the science) and not 4 and it’s out. I have a life – and a wedding – to look forward to and my fight will end. I am lucky. But, I know there are many people who are not so and, for that, I am very sorry indeed.

It was a letter packed with medical terminology. But, it still made me smile. Tagged on the end, after talk of ‘macrometastic disease’ and ‘adjuvant therapy’, was the phrase: ‘On examination her wounds have healed well with good cosmesis’. Thanks to the wonders of Wikipedia, I looked up the word ‘cosmesis’ and discovered it to mean: ‘the preservation, restoration, or bestowing of bodily beauty’. In short, the new boob is pretty good looking. I’ll take that. It’s in a medical letter. It must be true. It may not have a nipple, but the shape is there.

Of course, fuelled by my steroid high and no longer fearing the nausea I didn’t dwell on the letter or the boat trip. Mum and I proceeded to clean the kitchen floor (until I cut a finger on my right hand and went racing for the Savlon), do the washing, hang out the washing, change some lightbulbs, do some composting and cook up some Turkish delight. The dinner is now on. Let’s hope when the steroids wear off tomorrow, the positivity and productivity continue. There’s publishing work to get back to next week!

Cancer doesn’t do days off. In most cases, a pill or a layering of antiseptic cream will bury it in the background for a moment, but it never goes away. At some point, you will need that card. Hold it safe and play it wisely ­­– and dream about the day when you won’t need to play it again.