Tag: cancer day unit

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 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 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.

Breast cancer lesson number 50: Conquer those fears! The chemo chair is actually very comfy

On By Jackie ScullyIn Chemotherapy4 Comments

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I have pink pee. It started off red, and I am so thankful someone warned me otherwise I would have been running all the way to the nurses’ station. That, a mild ‘ice cream’ like headache, a bit of a sore right eye (random and linked to headache methinks) and a general feeling that something weird is going on, is all I have to report. And, most importantly, my morning cup of tea tasted great!

As mornings go, it was a pretty pleasant experience. I have been wondering why there isn’t much discussion about chemo and breakfast. It was only this morning that it struck me. In many ways, this morning was just like any other. No nil by mouth, no random taste issues. Just me and my muesli. When you throw in the fact that you’re not greeted at the hospital with a gown, general anaesthetic or anti-embolic stockings – just a comfy recliner and a hospital wristband – it feels like you’re going in for a nice sit down, not a helping of toxic drugs.

So here’s what happened. Having selected my chair (very excited that I got to choose a window seat), I was quickly handed six pills to swallow (four steroids and two anti-sickness tablets). As soon as that started to kick in, my very friendly nurse talked me through the toxic stuff (getting me to call out my name and date of birth with each one just to make sure they were going in to the right arm). First up there was red-coloured Epirubicin (the reason why my pee is pink) in four giant syringes. Then there was Fluorouracil (5FU) in two smaller syringes. Finally, there was Cyclophosphamide in a drip bag covered with a red sleeve. So, EFC not FEC if you go by order!

I felt good as my PICC line (when you’re sat opposite watching someone get their arm soaked to find a vein, you do feel pretty smug too) was hooked up to a saline drip, which is used to dilute the first six syringes. I felt better when the tea lady came round and I could enjoy my first tea of the day. And I felt even better when the pump beeped to indicate the drugs had run their course. It wasn’t a particularly sociable occasion (was in a bay with three older men who knew the ropes), but with mum at my side, we managed to laugh and smile through most of it. And the nurse – newly qualified in the giving of chemotherapy – was really lovely. Did you know, the children of OBE recipients can get married at St Paul’s Cathedral? (you learn something new every day).

I think my fascination for what is happening to me is keeping me positive. It feels like I am watching a scientific experiment rather than actually having things happen to me. It’s the first part of my treatment that really is all about cancer and, I still feel like I’m not really a cancer patient – I’m just surrounded by them. One day, it might kick in, but right now, I am more than happy asking lots of questions about syringes and watching my PICC line with interest rather than fear as the drugs go in.

On returning home, I was not only greeted by a tasty egg sandwich (yes I broke a rule and ate something I liked post-chemo, so let’s hope it doesn’t come back to haunt me), but I had pretty hats from Suburban Turban through the letterbox and news that my Breast Cancer Care feature has been published in my inbox. Not a bad day so far.

I would be lying if I said I didn’t fear this first session. I think it’s because, up until now, it’s just been about my boob, my tummy, my right arm and my ovaries. Now the whole body (my nice well feeling body) is in on the action, and I’m not sure how I’m going to react. Only time will tell.

Chemo and I are getting on well so far, so watch this space…

NB: by the way, I saw the scalp cooling kit today and hat’s off to anyone who tries it. Looks like an inverted rubber pyrex-style dish and cap attached to a large cooling machine. Glad I chose not to try and delay the hair loss.  

Breast cancer lesson number 49: Get that chemo kit list ticked off and let the destruction begin…

On By Jackie ScullyIn Chemotherapy1 Comment

With the words ‘green sputum’ printed on my appointment card and a hotline to acute oncology in my purse, I know that whatever the next four to five months has in store, it’s going to be memorable – that is provided ‘chemo brain’ doesn’t wreak havoc with my memory.

It’s now the day before chemotherapy – or FEC cycle number one. I feel like I’m in the calm before the storm and it’s a storm I’m not even sure will head in my direction. I’ve got the umbrella, sand bags, windbreak, torch and bottled water, but I can’t see what’s coming. I think I’m ready, but I’m not really sure what to be ready for.

All I know is that, right now, I’m healthy (and cancer-free). My body may look like it’s been into battle (not helped by the addition of PICC), but I actually feel really good (beyond a bit of shortness of breath that I have now declared). It’s hard to believe that with a combination of toxic drugs, steroids and anti-sickness medication, I might start to feel a bit less so.

With less than 24 hours to go, I feel like I should be doing something significant. As it is, I am tidying, washing clothes, composting and generally being a bit boring. But maybe that’s just because, when you’re life is anything but, boring is actually quite thrilling (remember the excitement I had post-surgery in lesson number 19, when I could empty the dishwasher for the first time). It was supposed to be my first day back at work, but with the timing of treatment, we all decided a day in the office might just not be what the doctor ordered. Of course, I do have the urge to brush my hair continuously (just because I can without risk of a clump coming out), I am chipping off my nail varnish so I can paint a darker shade on tonight and I am ticking off items of my initial chemo kit list. I wonder if I will develop a night-before-chemo ritual?!

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Chemo’s version of a kit list (for all kit list lovers) is a sight to behold. For every possible side effect, there is a whole raft of products designed to help you relax, sleep, fake an eyebrow and generally look less like a patient. I do have a burning desire to list them all down now and thank all those who have contacted me with ideas and suggestions. But, given I haven’t even sat in the chair yet, I think this might be a bit premature. I am also planning to set up a page dedicated to cancer kit once I have perfected my chemo kit bag (or carry-round-the-home chemo caddy) to cover all general, surgery, chemo and radiotherapy tips etc, so see this as a little teaser.

Top tips to get you ready for chemo
Here’s what I’ve learned so far…

1) The dentist is your friend: coming from someone who starts to pace four weeks before a dentist appointment, this is me encouraging you to face your fears. If you need more convincing, have a look at lesson number 28. A dentist in battle mode is an impressive sight.

2) Take the Cancer Day Unit tour: ok, so no one is queuing for tickets to this event, but a one-to-one visit at the chemo suite before you start is a great way to learn the ropes and meet the nurses, without worrying about the drugs part. I went yesterday and was pleasantly surprised by the layout, the peaceful surroundings and the thought that must have gone into the design of the unit. The reclining chairs look comfy and the views across London from the chemo bays are wonderful.

3) Put your appointment card and emergency numbers in a safe place: I was congratulating myself at being able to tuck my appointment card (think dentist card from the 1990s) and numbers into my purse, when Duncan pointed out that he often finds it hard to find my purse (quite what he is doing looking for it in the first place is a little baffling). So, I am diligently copying out the details for the fridge door.

4)  Dare to play with your hair: having decided not to go down the scalp cooling route for a number of reasons, I am now sporting a short pre-chemo pixie. Ok, so it doesn’t have to be as bold, but if you have luscious long locks, it may be quite distressing to watch them as they fall. Plus, if you’re going to (probably, although not guaranteed) lose your hair, this is your chance to opt for the cut you never thought you’d have the confidence to try.

5)  Try not to obsess about the side effects: having had two rounds with the oncologist and a good session on side effects with the chemo nurse yesterday, I am determined to let my body do the talking from now on. It’s vital to know what might happen so you can spot the signs and react appropriately, but I don’t want my mind to think they are inevitable.

6)   Be honest about your veins: the disappearing vein act is not one you will want to perform throughout chemo, so if you are worried about your arms (or the fact you only have one to choose from due to axillary node surgery), just ask.

7)  Put your trust in the chemo nurse: within the space of an hour yesterday, my brilliant chemo nurse had me pegged as a workaholic whose biggest challenge would be learning how to be less hard on myself and take it easy if I can’t operate at full speed (don’t know where she got that idea from!). The oncologists are there to extend your shelf life as long as possible (I’m thinking best before 2081!). The chemo nurses are there to make sure you are comfortable, at ease and kind to your body.

8)  Prepare your kit bag: I think I will feel more qualified to comment on this once I’ve worked out what I need for each session, but needless to say, a good book, the iPad, my phone, battery pack (from surgery kit list), lip balm, a drink, appointment card and some sweets (to mask any nasty tastes), are all packed. More on this soon…

9)  Pick up a thermometer and don’t be afraid to use it: if the Cancer Day Unit doesn’t provide you with one, make sure you have one in house (and know how to use it). High temperatures are usually written next to the words SEEK HELP IMMEDIATELY. They don’t call it an emergency ‘hotline’ for nothing. The chemo nurse did mention that it’s important to check your temperature before taking any paracetamol, as the drug tends to mask the signs.

10) Get ready to write: a chemo diary sounds like a great idea to help you get a sense of your ‘pattern’ on each drug. While I appreciate there is a cumulative effect too as your body is worn down by each dose, I think anything that can help give you an idea of what to expect, is a good plan.

Top chemo tips to test
With more than 50 chemo tips filling up my inbox and my ‘secret’ Facebook profile, it will take me a while to sift through and work out my ultimate chemo kit list. To get things started, here’s a quick list of ten things already lined up next to my thermometer that I am interested to try:

1)  Dark nail polish: thanks to my wonderful friends, I look like nail varnish aficionado, when I have only ever really worn one colour in my entire life. I have been practising with dark pink to get used to noticing my nails, and the dark blue goes on tonight. Why you ask? My nails may get brittle and break easily. They could also get darker and get lines and ridges on them. For a preventative measure, it’s one I fully support. After all, what better reason is there to get acquainted with your femininity!?

2)  Sleep caps: my ‘small boobs, big smiles’ branded hat is ready for action tomorrow night. I wonder how long it will take to collect any hair.

3)  Senna (or your favourite poo-charming substance): constipation (especially when you’ve recently experienced it with surgery) is a pain in the bottom. The anti-sickness medication is the major culprit I hear.

4)  Flavoured water and ice lollies: as a water fan, the thought I might not like the taste of it, does make me slightly sad. But, it does give me the perfect excuse to taste test everything in the cordial aisle at the supermarket. Elderflower anybody? My mum has also brought up our childhood ice lolly moulds (basically plastic lolly-shaped containers with chew marks on the old plastic sticks).

5)  Inflatable bath pillow: once I have worked out exactly when I can get back in the bath, this item is top of my ‘be-indulgent-to-self’ list. Think this one may live long after the chemo drugs have left the system.

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6)  Toweling robe: I cannot imagine being so tired I can’t lift a towel, but I have robe on standby and am not afraid to use it!

7)  Queasy drops: another thoughtful present and one that I would be keen to stress test if the opportunity arises. If it doesn’t, I will probably have to check these raspberry-flavoured sweeties out to comment on taste (purely in the interests of science of course).

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8)  Pineapple chunks: could be a snack staple for the next 18 weeks (fresh and healthy sugar kick). Will keep you posted.

9)  Ginger tea and ginger nuts: in the cupboard and will be tested frequently just to make sure they are still fresh :-). Ginger is apparently good for nausea.

10)  Brow Zings: when its rival product Gimme Brow arrives (both from Benefit), I will enjoy working out which make-up product gives me the best Jackie-looking eyebrow. They’ll probably get more attention through chemo than they’ve had in 32 years. Lucky eyebrows. I just hope they don’t fall out!

There will be more tips – many many more! Let’s just see what the drugs want to throw in my direction first.

Chemo, all I ask is that we try and be friends. And, if that is too much to ask, I have queasy drops at the ready and I will smile at every side effect you give me (just as long as I don’t have my head down the toilet).

Let the destruction begin…

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.