Tag: side effects with chemo

Breast cancer lesson number 69: When your ovaries are at stake, do what needs to be done

On By Jackie ScullyIn Chemotherapy, Fertility, Zoladex1 Comment

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While most people were on their way to work in the Capital today, I was on a quick detour (also on my way to the office I hasten to add). Yes, it involved the hospital. And, yes it involved this rather exciting gold box.

Now don’t be deceived by its shiny exterior. Inside this box is one of the largest and strangest syringes I have ever seen – and would ever want to see. That’s because, like a lot of syringes, it’s not designed to administer liquid. Instead, it houses an implant (a small pellet) that needs to be injected under the skin to release a drug called Goserelin. In the hands of a nurse with no local anaesthetic cream (and only a side and not a stomach in which to inject said implant), there is only one outcome – and it’s pretty painful.

Why would I want to inflict this optional pain on myself I hear you ask? Well, if you’ve followed my fertility journey, you’ll know that Goserelin (otherwise known as Zoladex) is all part of the try-to-stop-cancer-taking-away-my-fertility plan. Even though we have embryos in the freezer, we would still rather not use them. Zoladex is a synthetic version of a natural hormone that controls how the ovaries work. By switching off the production of oestrogen, it suppresses the ovaries and sends women into an artificial early menopause (hot flushes here we come). Just when you thought you’d had enough of side effects, it throws in a few more!

Now, it’s not the first time I have received this injection (the first one was alluded to in lesson number 42). I have already had a hot flush and I still have three more to go. But, it is the first time I’ve not just slotted it alongside other news of the day. And that’s because, it’s a big syringe, with an even bigger role to play. Nobody wants to sit in the chemo chair thinking they haven’t done everything they can to protect their ovaries and their chance of bringing children into the world. Everyone undergoing chemo should be given the choice, where appropriate, to go up against this oversized needle and endure a period of self-inflicted hot flushes. If the prospect of being able to have children fades before your eyes, you’ll know just why this gold box deserves a little post all to itself. Goserelin is not just a side note in the fight against cancer. It’s a star.

This box also reminds me of just how amazing medicine really is. We often take it for granted as we’re popping our paracetamol and rubbing in our ibuprofen gel. But, medicine has given us hope where are bodies have tried to take it away. Medicine knows how to trick cancer cells – and kill them. Medicine is the reason I can still picture myself changing nappies. And, most importantly, medicine is the reason I am alive today. I am in awe.

Read the Goserelin (Zoladex) factsheets and they sometimes say that the use of the drug during chemotherapy is still something currently being tested as part of clinical trials. Apparently oncologists don’t all agree about its use in this context. I’m not an expert, but I am writing this because I want to help others in my situation find out about the options. You may not be able to receive the drug (or have it recommended to you), but now you know to ask – and that’s all that matters. You also know not to look inside the box or at the needle. You just need to do what needs to be done.

In every other way, it was a normal day at the office. But, as I sat there answering emails and discussing visuals, I couldn’t help but smile at the throbbing in my side. Inside that little pellet is where the magic of medicine really comes into play. It may not work for me, but I will always know I gave it my best shot.

If you are interested in finding out more about the fertility journey as part of cancer treatment, I have written a blog for Breast Cancer Care. Here’s the link in case you find it of use: http://bit.ly/1gnEnyq

Breast cancer lesson number 68: Don’t count the days until the end of active treatment. Make every day count.

On By Jackie ScullyIn Charity, Exercise and breast cancer, Happiness2 Comments

This weekend I went for a run (although I guess jog/walk might be a more accurate statement). Ok, so I realise that in most households, this wouldn’t be headline news. But, if I tell you that, due to my hip, this is the first time in more than a decade that I’ve actually given my trainers more than just a light workout, you’ll see why it’s pretty significant. I’m slow, but at least I’m lapping everyone on the sofa.

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One of my biggest fears throughout this entire process is weight gain. I’ve been there. I’ve got the T-shirt. I gained more than a stone after hip surgery. And, I remember how much it hurt me when the clothes didn’t fit and the scales wouldn’t lie.

I went into chemotherapy with a body bruised from major surgery. Chemotherapy (contrary to popular opinion) does not tend to make you shed the pounds. The combination of steroids, appetite and fatigue-related side effects has led to people gaining stones not pounds. I say, not this time. The side effects have been kind so far, so I am taking advantage. Cancer already messed up my wardrobe once, and once is enough.

I am, however, not just running to keep the weight off. Every post-surgery recovery step I take is a step with a purpose. On Sunday 13 July I will be dragging my PICC line and my wonderful fiancée around the streets of London to raise money for Breast Cancer Care. Yes, it’s just 10k. Yes, it might sound more like a sightseeing tour than a serious race. But, for someone with a hip full of metal and chemotherapy drugs coursing through her veins (I will be 5 cycles in by race day) this is my iron man.

I am not a runner, but I am determined to give it my best shot to raise funds for a charity that has not just provided the literature to help me make informed decisions about my treatment but also given me the confidence to smile through hair loss. They have already done so much for me and I don’t want to wait until the end of active treatment to do something for them.

This charity – along with two school friends who reconnected with me earlier this year and are running the muddy version of the Race for Life to help fight cancer – is my inspiration.

Why run if I am not a runner? Running is my nemesis. Growing up I was teased for the way I walk (a walk I still have). In my twenties, I was worried I’d never run again when my leg started to fail me. I entered this race in 2006, but my hip pain meant I never made the starting line. If pain has done anything for me, it has made me a fighter. I will fight every step of this course for every person who has battled cancer and for every person with hip problems that can’t run the distance. This time, only the finish line will do. It won’t be fast. It won’t be graceful. It will hurt. But, if I can smile through eight months of cancer treatment, I can smile through this.

So, whether you can donate a few pounds, fancy coming to London on race day to cheer us on or feel like running the course too, I would be so grateful for any support. Click here for Justgiving page link if you’d like to donate or send me an email on jackie_scully@hotmail.com if you’d like to get involved on race day. Thank you from the bottom of my heart.

Together we can help more people smile through cancer.

Breast cancer lesson number 63: You can be hair free and carefree

On By Jackie ScullyIn Chemotherapy, Happiness1 Comment

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Ok, so hair free may be a slight exaggeration, but as far as I am concerned, a number two with a couple of bald patches is pretty much there. While I am not sure it is right that I should have less hair than my fiancée, I have to say, I like my head shape and, as haircuts go, it was pretty exhilarating. Who needs wig Suzie when GI Jackie is in town?!

Sitting in the hairdresser’s chair (not sure I should have chosen lunch hour at Canary Wharf but never mind), I didn’t feel at all sad. Funny as it may sound, I felt privileged to have the chance to experiment and liberated at the prospect. Four weeks ago, I couldn’t imagine having a pixie-shaped do, and I loved it. One month on, and all I could think about as the locks fell was how lucky I am to a) have a head shape that doesn’t resemble an egg and b) have so many wonderful friends and family all willing me on.

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How did I prepare for my exciting turn in the salon? As well as a nice glass of wine last night to toast my old locks, I plucked my eyebrows. Now it may sound strange to be voluntarily attacking the hair that doesn’t want to fall out (yet). But, my view was that if my head was going to look a little naked, I best make an effort everywhere else. Why the leg can’t fall out first is beyond me!

This morning, after examining my bald patch, applying some eye makeup and adding a headtie, I met up with Duncan and headed for the clippers. My hairdresser was amazing. He tucked me away at the back of the salon and cut my pixie down to size (first with scissors and then clippers) before washing and oiling my head. It felt like a proper appointment. I even got time for a cup of tea. And, the best bit? It was free! I do think the lady sat opposite actually thought I was making a conscious style decision as I laughed through the whole thing. Her facial expression first had a hint of pity and then a hint of confusion (or maybe just fear). It felt good – and a little naughty.

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Surprisingly happy with the new look (and the fact that I will be saving loads in shampoo and conditioner), I left Suzie in her bag and opted for a fun blue hat. On the train on the way to work, I found myself fascinated by the lack of hair demonstrated by other passengers (style choices I might add). I also had a burning desire to whip off my hat and join in. One thing I love about London is that nobody cares. They’d probably just think I was channeling my inner Jessie J.

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The hat didn’t last long (lovely as it is, it just feels wrong wearing it indoors). My office were quick to embrace the new look and share in the excitement of the day. After that, it was au naturel all the way. Yes, people had a good look. But, the truth is, I don’t look ill. I just look like I’m making a rather bold fashion statement.

How do I feel now? I couldn’t be happier. I took control. I no longer have to watch the strands fall. Cancer can’t take what isn’t there and just knowing that makes me feel empowered. Plus the feeling of a light breeze on my head is unlike anything I have ever experienced. It soothes me in a way I can’t articulate. I’d say try it, but that might be a bit extreme, so you’re probably safer taking my word for it.

Today I was strong. I looked cancer in the eye and I took charge. I also discovered that hair is over-rated. It isn’t a part of who I am. It’s just a little nice-to-have. I will miss it, but I know I’ll be a better person for having lost it.

Coco Chanel once said: ‘a woman who cuts her hair is about to change her life’. It’s only now I truly understand the meaning of that phrase.

All I can say is, if it’s coming off, take it off. It may not be a haircut I’ll ever choose again, but it’s probably the best haircut I will ever have – and the one you will probably always remember.

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 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 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 51: Where there’s a will, there’s a way

On By Jackie ScullyIn Chemotherapy4 Comments

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What would you crave after a steroid-induced sleepless night? A really good shower. What does a PICC line usually prevent you from enjoying? A really good shower. That is, unless you, like me, have a new plastic protection sleeve as part of your chemo kit list! Meet LIMBO.

Ok, so it looks like I am about to enter a radioactive zone. But, as a sleeve for keeping my arm dry, this rather odd tube is pretty effective. And, most importantly, the shower was really good (worth mentioning I did not shower fully clothed, but I don’t think you’d want to see the rest!). I won’t dwell on the fact I am now over-analysing every part of me to make sure nothing is falling off – or the fact I cut my legs shaving for the first time in about a decade.

If I’m honest, the last 24 hours is not something I would like to repeat (only 21 days to go until I have to sadly). I think I have got off lightly so far, but here’s the side effect list. It’s steadily growing…

a)    A nasty bout of nausea lasting from 4.30pm until about 11pm (but my ‘three vomits in a lifetime’ record is still in tact thankfully). We had some emergency extra anti-sickness meds, so these were taken and made me feel a lot better.
b)    A bright red face (maybe hot flush, maybe drug reaction, definitely not temperature). More a source of amusement rather than a pain.
c)     A sleepless night (for me, Duncan and mum). Steroids made me wide awake, but my body was screaming for sleep. Too weary to read or get up. Too bright-eyed to rest.
d)    An ice-cream headache. Easing this morning thankfully.
e)    A dry mouth. I feel like I have consumed two bottles of wine and haven’t drunk any water for days. This couldn’t be further from the truth.
f)     Weird taste sensations. Tea still tastes good, but it feels like it has been diluted down (if that makes sense). The taste is there, but my palate has been suppressed. I know Weetabix tastes like cardboard on a good day, but today it was hideous.

The chemotherapy hangover on its own is not particularly exciting. Add in the continuing effects of surgery and the ‘trying-to-get-comfortable’ game is not particularly pleasant. I roll onto one side in bed and find PICC line. I roll onto my other and the odd sensations in my bad arm and new boob kick in. I lie on my back and my tummy pulls through the body corset. In the end, I ditched the corset in favour of some Bridget Jones-style pants and felt a little better. Thanks to more than 30 wonderful university friends, we have a new mattress arriving today (the last one was given a shelf life of 10 months when I bought it more than a decade ago), so hopefully that will help us as we search for sweet dreams tonight.

Of course, it’s not all bad. I don’t have a temperature. The pink pee is getting lighter. My appetite is still there (even if the food tastes weird). There wasn’t a strand of hair in my sleep cap and I’m even getting chemo tips from the boss. Plus, flat lemonade is really exciting. The weirdest part is just not knowing what to expect next. Thankfully mum and Duncan aren’t staring at me constantly for the next reaction.

Having popped eight pills this morning, I am hoping for a quiet and better day. The queasy drops are working, the baby toothbrush is kind on my mouth, and today’s mission is fresh pineapple (before settling down with a good book and a film).

I’m still smiling. If this is it, I will be very lucky. If it isn’t, I may need to dig a bit deeper and cling on to every bit of positivity I have. Here’s hoping for a better night.