Tag: chemo

Breast cancer lesson 157: It takes time to heal

On By Jackie ScullyIn Chemotherapy, Moving forward, Reflections on cancer3 Comments

I have lost a nail. Now, if this had been as a result of an ill-timed run up the stairs or poor football move, it wouldn’t exactly be headline news. But, given this is the first chemo nail to fall (a toenail thankfully), it is a moment I feel I have to acknowledge.

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It’s five days on from the end of active treatment and I feel I having been making good ‘moving forward’ progress. The cards are down (although Duncan now thinks the living room is so bare it looks like we are moving out not just on)! The house is so clean you could eat a meal off the floor (not something I am going to test mind you). And, I feel fitter, healthier and a little bit hairier.

The nail incident, however small it may seem, is a sign though that cancer (or more specifically its treatment) isn’t quite done with me yet!

It does feel a little mean that you can often start looking a little worse for wear when you’re not actually being treated. I am currently on ‘boob watch’ to see whether the radiotherapy is going to do any real damage to my skin (it is just a bit red and angry at the moment). I still can’t sleep properly. The menopause is still in control of my body. My hands and feet still feel a little disconnected. And now, it seems, I am also on ‘nail watch’ (which currently involves tapping and fiddling with my nails every five minutes to see if anything else drops off). At least my hair has a thin covering of hair to keep me distracted.

The thing is, to a cancer patient, nothing about the above is particularly unusual. We understand the side effects will last for a while (and signed a form to let them). We know that underneath the smiles and the ‘back to normal’ activities we may have to cope with pains and twinges. We know it will take time for us to trust our bodies to know a cold is just a cold and a cough is just a cough. We know our lives, while brighter and enriched in many ways, will never quite be the same again.

Today, it was just a nail. Tomorrow, it may be something else.

One day, I will want to forget. For now, I need to remember, so I can give my body the attention, the tools and the time it needs to heal.

I hope you’ll give me time too.

Breast cancer lesson 150: Ten things that will never taste the same again because of cancer

On By Jackie ScullyIn Baking, Chemotherapy, Happiness, Reflections on cancer2 Comments

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Today I did a little dance after standing on the bathroom scales (a rare event I grant you). That’s because today, one month after the official end of chemo, I have returned to my pre-surgery weight. Thanks to jugs of water (with a squeeze of lemon), bran-based breakfasts, run/jog/walks around Greenwich Park and, yes, the odd comfort cake, I have space in my jeans once more and a great big smile on my face.

When I think back over my food choices over the last nine months, I can’t help but laugh. With my love of water, tea, fish, meat, cheese, bread, biscuits and cake, I have always been fairly predictable. Daring for me is throwing balsamic on the courgettes! Add in a fair few helpings of jelly babies, pints of lemonade and ginger biscuits thanks to chemo, however, and you could argue my diet had started to resemble that of faddy child. Not perfect timing when you consider our garden has been more productive than ever this year (although I am making up for it now by working my way through our tomatoes).

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With the chemo cravings a distant memory, I would like to be able to say order has been restored once more. But, that’s not quite true. For starters, my tastebuds are in overdrive. Everything feels like an explosion of flavour in my mouth.

Amazingly, I have even started savouring my food rather than racing the clear the plate. Whether this slow down will continue remains to be seen, but I will enjoy it (and its impact on my digestive system) as long as it lasts. It is a wonderful feeling to enjoy every mouthful and I’m convinced everything tastes better (although that might have something to do with the fact it couldn’t possibly taste worse).

Of course, when people talk about food and cancer, thoughts immediately turn to chemo – aka, the tastebud stealer. And yes, while it does make a pretty big impression on the dinner plate, it is not the only treatment and life-changing event to alter my view of certain foodstuffs.

So, here are ten things I know will never taste the same again (heightened tastebuds or not).

And, the good news is, it’s not all bad…

1) Chocolate: I have always had a weakness for chocolate and, dare I say it, the cheaper stuff usually (Dairy Milk and Twirl, with a bit of Green and Black’s vanilla chocolate thrown in). Now, every time I even look at a bit of chocolate, I am reminded of the chocolate hampers and treats that arrived in the mail to help me pile on a few pounds before surgery. That chocolate made my new boob possible and I will be forever grateful for it. I had never eaten a Hotel Chocolat chocolate before in my life. Now, I could probably describe the entire range! It was a bit dangerous creating a chocolate cupboard in the house, so while Duncan and I started to think of it as an essential nightly ritual, the new waistline wasn’t quite so sure. There is a little chocolate in the house now, but don’t tell Duncan, because he doesn’t know where it is :-).

2) Mashed potato: Oh, NHS, why is it that your mashed potato tastes so good? I never wish to eat your toast for breakfast again, but your smooth creamy mash is amazing. I appreciate the morphine may have had something to do with it!

3) Bananas: Ok, so they don’t have quite the same impact as they would on that comic book character Bananaman, but now I’ve taken up running (as an act of defiance against this dreaded disease), when I’ve eaten a banana, I feel like my legs could power on forever. Of course, I haven’t actually gone further than a 10k to test this theory, but I will always have a soft spot for this fruity fuel and its ability to get my round Greenwich Park.

4) Anything with ginger in: I never used to understand why people got so excited about ginger. When you go in search of the ultimate ginger chemo cookie, however, this little ingredient does take on a whole new meaning! I think Delia’s ginger nut recipe is still a personal favourite, but I have enjoyed my journey through everything from gingerbread to ginger syrup cake. That doesn’t mean I’ll be stealing your ginger chocolate any time soon mum, so don’t worry.

5) Grapes: I love grapes, but I certainly won’t be freezing them again any time soon! The freezing idea was a way of eating fruit, while simultaneously trying to cool the mouth in the chemo chair to reduce that cycle’s side effects. I think it is fair to say it was as worthwhile as wearing sunglasses in a darkened room.

6) Ribena: Before cancer, I used to associate Ribena with my great aunt, who likes to drink it warm because she (shock horror) doesn’t do tea. Having been my ‘water’ for the entire chemo period, however, it is now sitting proudly in the fridge waiting to be diluted once more. It is incredibly sweet and it does remind me of the drug epirubicin, which isn’t ideal. But, if I drink it with my eyes shut, everything is ok.

7) Wine: I will never forget my first flavoursome sip of wine when my tastebuds reappeared for the last time on chemo cycle six. I was in a restaurant in Padstow and the lady serving us poured a small glass for me to try (no point buying it if I can’t taste it). It was magical. Acidic wine (the more acidic the better), was a friend on chemo. It isn’t a friend any more. I am also glad to say that red wine has been reintroduced once more. It had a bit part in my chemo story. I couldn’t taste it at all, but a glass before each blood test did help those levels (this is not a recommendation)!

8) Ice lollies: For me, ice lollies have always been a real sign of summer (my favourite being the Strawberry Mivvi, which I have avoided of late). Sadly, I think those days are gone. I did have a fruit pastille lolly in Cornwall, but it was for medicinal purposes. When you’ve craved them constantly for months as a way of shocking the tastebuds into action, they don’t quite have the same appeal. Oh well, best stick to farm ice cream and waffle cornets in future. It’s a hard life.

9) Bread: I never want to remember the peanut butter on toast chemo moment that felt like my mouth was being welded together with superglue and cardboard. Now the subtle flavours of bread are once again present in my life, however, I don’t think I will ever take them for granted again. Beautiful crusts, fluffy light rolls and floury baps, I love you all! I am thoroughly enjoying my ‘year without buying sliced bread’ challenge! 

10) Eggs: If all I had to eat for the rest of my life were eggs (with cheese of course), I would be a happy lady. That’s why I was excited when a friend recommended Nigella’s Eggs in purgatory meal. Trouble is, I love it so much, I think I ate it about 40 times during the chemo months. We are, as you can imagine, on a bit of a break right now.

In truth, nothing will ever taste the same again.

And, you know what? I wouldn’t have it any other way.

Breast cancer lesson 136: Say goodbye to the fake menopause – and hello to a good night’s sleep

On By Jackie ScullyIn Chemotherapy, Fertility, Zoladex2 Comments

Contrary to what my oncologist thinks (although I fear he was trying to lighten things), no woman needs a fake menopause to prepare themselves for the real thing. You may see it as an end to periods as you know them. In truth, the menopause disrupts so much more than that (sleep being top of the list) and, enduring it more than once is not something ever to be encouraged.

That is, unless you want to try and give your ovaries a chance of coming back to life after chemo!

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Four weeks ago today, I was waiting patiently in the oncology clinic for my very last Zoladex injection (click here for lesson 124 and a quick reminder). Zoladex (also known as Goserelin) is a hormone therapy sometimes offered to pre-menopausal women throughout chemo to send their ovaries to sleep. The idea is that chemo drugs tend not to attack things that aren’t actually doing anything (similar to the cold cap treatment to reduce the chances of hair loss). While its effectiveness is still yet to be proven, it is widely agreed that while taking the drug may not guarantee you retain your fertility after treatment, it certainly doesn’t do any harm (unless you see four months of sleep deprivation as harmful)!

With no Zoladex appointment scheduled, today marks the start of the waiting game. Up until now, I have not expected a period. Now, I live in hope that my body will return itself to normal and not actually send me into the official menopause (if feels strange to be wanting something like a period. I will probably regret saying that if it comes back with a vengeance). The odds, based on my age, are good. The reality? No one knows and no one dares predict. It’s saving me a fortune in sanitary products, but I would really rather just take the hit.

I haven’t written much about my feelings surrounding the prospect of infertility. I have always been a great believer that things are meant to be. I remain thankful that lots of my friends have been able to conceive and I feel lucky to have so many children in my life (if not under our roof). Whatever happens (even with seven embryos in the freezer), I just feel happy to be here. The future can take care of itself. The way I see it, childless and alive is still a good result! And, if children do feature in our future, I have Zoladex to thank for preparing me well for months of sleep deprivation.

Of course, it’s not just the periods I am willing to return. A night without a yo-yoing temperature is something about which I have been dreaming (when I get the rare chance) for a long time. I understand that Tamoxifen – my soon to be best friend for the next 10 years – is likely to cause at least some of the same symptoms (lucky me!), but given I don’t have to start taking this daily delight until radiotherapy is over, I am hoping for at least a little break (PLEASE!!!!!!). I am now pretty effective on about three hours (my usual pattern is to fall asleep straight away and then wriggle around in a few different outfits from 2am onwards) – but I really wish I didn’t need to be. When a lie-in is once again a treat, you will all know about it. The title of this post may seem a little premature, but I am hoping by expressing it publically, my body might just take the hint!

My fingers are well and truly crossed. Let the waiting game begin!

 

Breast cancer lesson 129: Chemo may eat your eyebrows, but don’t let it steal your smile

On By Jackie ScullyIn Chemotherapy, Happiness1 Comment

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Chemo week one – by which I mean the first week in a three-weekly cycle usually reserved for grimacing, steroids and a general feeling of emptiness – has actually been unexpectedly lovely. I think this has a lot to do with the fact that it is my last ‘chemo week one’, meaning that every day I get one step further away from poison and one step closer to being able to taste something that doesn’t have the words ‘ice lolly’ in the description. But, I started out last Friday determined to enjoy even the darker days. And, that’s exactly what I’ve done.

I was told the last chemo would feel different. You’re not preparing your body for another round in the unit. The PICC line is out. There are no blood tests booked. The pill packets are emptying and don’t need replenishing. You’re doing things for the last time. Until you experience it, however, it’s hard to know whether that will be the case. After all, the dose is the same, the injections are still prickly and the medication still makes your cheeks puff up!

Seven days in and, touching all wood available, I am feeling good. Yes, I have pain. Yes, I have tingling hands and feet and cramps overnight. Yes, my tongue is a fluffy white colour, which makes me want to swig Difflam with every meal. Yes, the tastebuds have gone. Yes, the dizziness is here. And, yes, I still haven’t a clue what a good night sleep is. But, I feel good and that’s all that matters. I know low immunity week comes next and I also know things do have a habit of falling off (the final eyebrows and the nails being top of the list) when it’s all over. I am not out of the woods, but I can certainly see a clearing ahead!

Of course, I am putting a lot of this good feeling down to the fact the end is not just a distant dream, but a nice chunk of reality (8 August is the official chemo end date, which is now just two weeks away). But, I did also try a new tactic this time. I left London, and spent a few days at my family home. And, I have to say, it was truly magical.

Magical moments for me aren’t once-in-a-lifetime events. They are little moments that remind me just how lucky I am to be alive. It’s laughing with a friend after 14 years apart. It’s holding hands with a great aunt who nearly lost her life just two years ago. It’s sitting in the garden eating home-grown potatoes, carrots and beans. It’s lying on my parents’ bed watching TV. It’s a walk in the long grass on local parkland. This weekend taught me that I have my past to thank for the strength it has given me to move forward.

I have actually turned myself into a self-styled ‘student of happiness’ of late in an attempt to see whether there is a way I can ‘be happier’ when the business of life resumes. I was reading something only the other day about the importance of applying the airplane safety announcement ‘put your oxygen mask on first’ to daily life. Those who first look after themselves are best placed to look after others. While I hope never to see an oxygen mask again, I fully intend to make the most of the cancer’s thorough overhaul. Cancer hasn’t made me happy, but I know it has given me the time to reflect, focus on me and work out that I have been happy all along (I just didn’t always see it)!

If you have any reading recommendations to help me as I explore everything happiness has to offer, do shout.

Back in London now, I am still smiling (just a bit hotter). This has something to do with the sunshine and a lot to do with the ‘end-of-active-treatment’ date that is now penned in the diary. MONDAY 15 SEPTEMBER is less than two months away! I can almost touch it.

Whatever you are doing today, I hope you find time for a little happiness!

Breast cancer lesson number 123: Take the first step and see just how far you can go

On By Jackie ScullyIn Charity, Chemotherapy, Exercise and breast cancer1 Comment

If you want a reminder of all that is good in the world, then you just need to visit London on a day when the streets are packed with charity runners, not commuters and cars. Yesterday, I, along with Duncan and three friends, took to the city streets to do our bit for Breast Cancer Care. I had convinced myself we’d be touring the landmarks and stretching our legs. In truth, it was a whole lot harder than that.

Having only done the 5k Race for Life many many years ago, I had forgotten just how inspiring and amazing a crowd of runners and spectators can be. Running with my close friend Fran, I was overwhelmed by the kindness of those around us. I thought the spectators would give us a lift (which they did), but I had no idea the runners would be quite so encouraging. We were tapped, squeezed, blessed, thanked, congratulated and applauded. At one point, I was even kissed by a fellow runner, which was slightly disconcerting and astonishing. I thought I was going to trip with the shock of it all and I did well up on more than one occasion.

I am delighted to say that we jog/ran about 9km of the route and walked the other 1km. At times it was exhausting (at 3km I thought I’d never make 7km let alone the full 10km), at times my hips were hurting (thankfully, my body is back to normal today so no harm done) and, at times I felt like the tank was pretty much empty (even though I had had breakfast and a trusty banana). But, just thinking about all the amazing support, friends, and those waking up to face cancer every day, kept me focused and got me over the finish line.

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The moment we crossed the finish line is a moment I will never forget. It wasn’t graceful and I can’t say I had a massive spurt at the end. It was special, however, because it marked the end of a journey that, at times during chemo, I thought I would never complete. It was my mountain and I’d climbed it. It feels amazing to have raised money for a worthwhile cause (between us we’re up to about £3,000 in sponsorship) and achieved something for myself at such a difficult time.

I am glad to report the legs, PICC line and heart are still in tact and the head feels refreshed after all that rain. It was hard. But would I do it again? Absolutely. Just maybe not tomorrow!

To top it off, I got home to find a wonderful friend had sent me a book all about running to inspire me to keep going. It was perfectly timed and is something I will both enjoy reading and treasure forever.

So thank you for your messages of encouragement, your tips, your sponsorship money, your Facebook likes and your unwavering support. Thanks to the amazing small boobs, big smiles team for running a great race and joining me on the course. Thanks to all the kind strangers who gave us a boost with their words of encouragement (and kisses). Thanks to Breast Cancer Care for being a superb motivator. Thanks to my trainers for not giving up even though they’ve seen better days. And thanks to my body for going the distance. There were times when I thought I wouldn’t make it (I had my acute oncology card in by back pocket just in case). But, I am so happy I did!

If you’re hesitating over filling out an entry form or worried about whether or not your trainers will make it round a course in one piece, I would urge you to apply for something soon. It was such an amazing discipline and gave me a reason to get out of bed every single day (even when the pain was willing me to stay under the duvet). It has been great for the mind – and the weight management. And, it is the reason I have been smiling for the last 24 hours.

You don’t have to be fast to call yourself a runner. You just have to try and take that first step. Yesterday I was runner among a field of amazing runners. And, all I can think about now is when can I do it all over again?

If you have any suggestions for my next challenge, please let me know. And, if you fancy joining me, you know where I am!

Breast cancer lesson number 122: It’s not the finish that matters. It’s the fact you had the courage to start

On By Jackie ScullyIn Charity, Chemotherapy, Exercise and breast cancer1 Comment

I have just been safety-pinning my race number to my running top and arranging meeting times with friends and, I have to confess, I am so excited about tomorrow’s 10k.

Funnily enough, this feeling has little to do with the race itself. Reaching the start line alone will mean more to me than registering a time. That’s because, when I signed up for the race months ago, I never thought I’d make it.

Up until I started training, I had never run more than a 5k. I did the Race for Life many years ago and it was enough to give me the groin strain that eventually landed me on the operating table having major hip surgery in 2007. I think it is fair to say I don’t have runner’s legs (or runner’s anything for that matter). And, I think from the looks given to me by my medical team, trying to develop them when your body is being systematically destroyed and rebuilt with chemo drugs, is a pretty odd thing to do.

For a runner, 10k is a bit of lunchtime exercise. For me, it’s a marathon uphill on cobbles with no trainers. Just training for it, however, has given me strength, confidence, a reason to get out of bed and, most importantly of course, slightly better thighs :-). Running (by which I mean jog/walking, but running sounds better) has been my lifeline and my motivator. It has given me space to think, dedicated me time, the justification to eat a few treats and the energy and strength to kick cancer out of the park. Put simply, running has made me happy.

When I submitted my entry, I remember thinking this run (if I get there) will be a fantastic way to celebrate the end of chemo. I cannot believe this run is tomorrow. Every step will be on step closer to the end of active treatment (which I am hoping will be the end of September). Tomorrow’s finish line isn’t the real aim. It’s the finish line at the end of radiotherapy that I am aiming for. I know running will get me there.

When I stand on the start line tomorrow I won’t just be thinking about how far I have come (both physically and emotionally). Tomorrow, I will be running for my life and for the lives of all those who have been affected by cancer.

Knowing that I will have close friends by my side, who have gone out of their way not just to train, but to raise money too, means everything. And knowing that I have received so much amazing support from friends and family will give me the motivation to put one foot in front of the other, when it gets tough. (For anyone worried about this from a medical perspective, I promise to run my own race and take it steady!) Thank you from the bottom of my heart for believing in me, giving me a reason to battle the bone pain, and helping me raise money for such a superb cause.

They say happiness in life comes from achievement with purpose. I think that’s pretty accurate. I would urge anyone trying to get fit – or just get out of bed every day – to set themselves a challenge that means something to them. It could just be a really small thing, but it might be that that small thing makes the biggest difference in your life. Trust me, if I can run around the streets of London with chemo drugs in my body, you can face your fears.

So, whatever it is you are doing at 9.35am tomorrow, spare a thought for Duncan and Rob (who are running through injuries to support the cause), Emily and Fran (who are mothers challenging themselves and helping a friend) and me (the girl with no hair who decided to make every day count not so long ago). I must also mention my physio who is running the race too. I hope we all get to the finish line in one piece, but I am just so happy that we will be standing on the start line together.

Whatever challenge you set, may it be rewarding and life-enhancing. I wish you every success.

 

Breast cancer lesson 88: Happiness is knowing the halfway point is in sight

On By Jackie ScullyIn Chemotherapy, Happiness11 Comments

Ok, so I may be pushing it slightly by suggesting tomorrow marks the halfway point in my chemo treatment. But, even though I have another 12 weeks (out of 18) to go (making it just a third in terms of timings) tomorrow is the third poisoning out of six. That makes it pretty special.

Being the third chemo, it also means an end to FEC and, in particular Epirubicin. No longer will I have to watch the blood red liquid being syringed slowly into my veins. No longer with I have pink pee to remind me of the poison every time I go to the loo. After tomorrow’s session, I will say goodbye to the three-drug cocktail and hello to a new challenge (Docetaxel) for round 4. While it does require me getting used to a whole new set of side effects, I like the idea of a change.

How am I feeling about going back on the steroids, the anti-sickness medication and the chemo drugs? If I’m honest, a few days ago, I was a little worried.

Cycle one had a go at my hair and showed me just how nasty mouth ulcers can be. Apart from that, however, it left me alone and reassured me that I have the strength and the positivity to get through this. I went into cycle two with a smile on my face, confident the drugs were on my side. Little did I know as I sat in the chemo chair, just how much it would test me.

Don’t get me wrong. I am one of the lucky ones. But, with its tongue and mouth ulcers, vomit, nausea, headaches, tiredness, coughing, runny nose, hot flushes and sleepless nights, chemo is no walk in the park. I am going into tomorrow with an ulcerated tongue, the end of a cough and on the back of few too many nights of broken sleep. Physically, I have been challenged and, while my body is fighting back, it is not quite as fit as I’d like it to be.

Ask me how I am feeling now, however, and I would say, I am ready (if we ignore the false start I had this morning where I misplaced my travelcard and threw my iPod in the recycling bin by mistake on the way to today’s appointments). I know, whatever goodies it has up its sleeve (or in its syringe), I can and will get through them all. I am stronger than the drugs – and I know that while they have destruction on their minds currently, they will end up making me even more so.

Plus, I have a few new tricks. The evening poisoning for cycle two caught me off guard. I met my mum at the hospital. I hurried my lunch following a rather soggy encounter with a washing machine that decided not to spin my clothes, but instead wash my floor. I wasn’t on my game and I wasn’t focused on the right opposition (my floor needed a wash anyway). Now I am.

My mum is here the night before to help me avoid any unnecessary hurrying. I have grapes in the freezer (apparently sucking on them while having chemo can help the mouth). I am ready to drink my body weight in water. I will be making my first batch of chemo cookies tonight to ward off sickness and nausea. And, I will be requesting more anti-sickness medication at tomorrow’s session with the nurse. For every side effect I know of, I have a solution. And, for every one I don’t, I have my supportive and kind mum. Quite frankly, if I were the chemo drugs, I’d be scared!

Let’s just hope I pass the blood test first thing. Wish me luck!

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 48: Short-term pain, long-term gain

On By Jackie ScullyIn Chemotherapy6 Comments

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Meet PICC. He’s my new best friend for the next four months (sorry body corset, but you’re history as tummy is pretty much sorted). Otherwise known as a peripherally inserted central catheter, he’s my ticket to the pain-free (and finding-a-vein free) administration of chemo drugs and collection of bloods. He’s not much to look at, but he’s better than a needle (or eight) and that’s all that matters.

There’s nothing like getting 42cm of flexible tubing inserted into your arm to make you feel like a real patient. One more consent form and another plastic wristband down and I was lying on a bed staring at an ultrasound machine, a syringe full of local anaesthetic and a lot of wipes and tubes. The good news? I didn’t have to wear a gown!

It started well. The nurse found a vein with the ultrasound while I was quizzing the nearby student nurse about all the operations she’d observed. (She was quite forthcoming about the details, including the time she watched a surgeon connect blood vessels from a tummy to a chest as part of DIEP surgery. It was fascinating and certainly a strange distraction from the procedure). The local anaesthetic went in well and then the tubing started to enter my arm. I heard the word ‘kink’, then a pause, then a ‘could you bleep the other nurse?’ and a ‘I’m sorry it’s got to come out’. She had done so well and got so far, but when the pressure turned to pain (it’s not supposed to hurt) we both knew it was time to abort. Another vein thrown on the vein scrapheap!

Round two was a complete success. Vein located, anaesthetic in, and 45cm of tubing later and I was off for a chest x-ray. I say 45cm, because the x-ray (an interesting experience in its own right and another x-ray first ticked off the list) highlighted that the tubing was in about 3cm too far. So, I was back to the Cancer Day Unit to get it pulled out a little bit. The tip of the PICC line sits in the big vein just outside the heart, while at the other end, there is about 4cm sticking out of my arm. Don’t worry, for those of you concerned about whether it will come out, the line is held in place by something called a ‘statlock’ and a transparent breathable dressing. Golf and tennis are now on the ‘temporarily banned’ list (along with swimming due to chemo), but I should be able to use it as normal once the initial tenderness has subsided. For those of you who’ve been unlucky enough to see my golf swing, you’ll know this is no great loss. The Olympic Park swimming trip on my Brighter Life list, will just have to wait.

Tucked away neatly under a piece of tubing, it wasn’t until I reached for my cardigan that I stumbled across challenge number one. At the moment, bad arm is right arm, so bad arm goes in to the sleeve first. But what happens when you have two sensitive arms? Let’s just say, it was a pretty good comedy sketch and, after a quick wrestle, I managed the cardie. The coat is a challenge for another day!

One other thing I didn’t consider in this battle against bad veins was that, like all good cannula-like devices, it needs looking after. That means weekly dressing changes and line flushing. More nurses, but thankfully no more needles! That’s a price worth paying. 

Today I have learned a good few things. One, the Cancer Day Unit is lovely (more on that tomorrow). Two, my right arm is now straight enough to pass arm testing for the clinical trial. (It took six attempts and the nurse and I were laughing by the end, but we got there.) Three, PICC line insertion is an interesting procedure (as is a chest x-ray) and really isn’t that uncomfortable if you’re considering getting one. Four, details of the acute oncology assessment unit must now travel with me everywhere. And, five, my blog URL is (amusingly) blocked by the hospital WIFI (probably deemed as dubious, but given the amount of boobs currently on show in most hospitals, I find it so funny. Mine just includes the word). The hospital does do a good egg sandwich though, so I’ll let them off.

I’ve seen the unit. I’ve seen the chemo chair (looks quite comfy). I’ve seen the suite and I’ve got the line. There’s only one thing missing. Those cell-destroying drugs. Just two sleeps left.

First, I have to work out how to have a shower without getting the PICC wet and then I need to look at just how many more clothes are now off limits due to my new arm accessory. Just when I thought I was getting my wardrobe back.

Breast cancer lesson number 46: When you’ve got nothing to lose (except your hair), go for it!

On By Jackie ScullyIn Chemotherapy3 Comments

I have a challenge for you. If there’s anything in your life you’ve always wanted to do, then find the time and the space to do it – and soon. Put it off no longer. I’ve just been for the shortest haircut of my life and, I have to say, I feel totally liberated. I’ve always wondered what I’d look like with a pixie haircut, and now I know. And, you know what? I wish I’d done it years ago.

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Ok, so having a pixie cut fours days before chemo may not sound brave or overly outrageous. After all, it was always going to look better than bald. But, having had a rather chequered history with anything shorter than a graduated bob, taking it off before cancer gets its hands on it was still a big decision (people forgive the cancer, but I think they’re less forgiving about elective style changes). This is something I decided to do, not because I wanted to make a statement, but because I want to keep the strands falling into my sleep cap to a minimum.

The last time I had hair anywhere near this short I was eight. Let’s just say it was forgettable. The local newsagents kept referring to me as ‘boy’ and, on a school trip down a mine, the guide asked me – otherwise known as ‘the lad’ – to assist in a demonstration. Sadly, at the beginning of the 1990s taking (and developing) photographs of virtually anything was all the rage, so there is a little too much photographic evidence of my basin look. I thought I’d never go back. I am so glad I did.

As my last hair appointment for more than six months, it was pretty special. Delighted that I have at last let go of the trusty bob, my hairdresser was visibly excited at the prospect of taking even more off. Getting an ‘it really suits you’ from the guy who has been cutting your hair for years – not to mention a quick head massage and a cup of tea – and then watching as his colleague complemented him on his snipping skills, is not something that happens every day (or even once in a decade for me). It felt good.

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Hair, we’ve had a good 32 years. I did once think you were a bit rope-like in consistency, and longed for a plait that didn’t look like it could moor a boat. I’m not sure the obligatory perm in my teens was a good idea. Growing my hair to the point at which I could sit on it was a bit misguided. Thankfully, the basin fringe was just a phase. And, having a four-hour trim with a hairdressing apprentice while at university, only to discover I had just 2mm less hair and roots dyed-in (can’t blame the apprentice, it was free) was a low point. But now, I appreciate you more than ever. I like your strength. I like the fact you’re a little bit of me. And, I hope that whatever grows back will give me as much pleasure – or at worst amusement (it could be grey, it could be baby curls, it could be me all over again).

While I felt a slight sadness knowing that I couldn’t book another appointment, and that the next time I would be here would be to let my hairdresser shave it all off (once the clumps start falling), I also felt a real boost. I’d had the confidence to do something different. If you don’t change a thing, there’s nothing to see.

They say if you’re not living on the edge, you’re taking up too much room. I am ready to step out of my comfort zone – as long as I can bring a cushion when the edge occasionally becomes the sharp end!

This is one hairstyle that won’t be growing out. This one’s going to fall out. Wish me luck!