Month: April 2014

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

On By Jackie ScullyIn Chemotherapy2 Comments

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

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

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

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

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

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

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

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

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

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

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

On By Jackie ScullyIn Chemotherapy4 Comments

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

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

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

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

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

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

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

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

Time to bring out the homemade ice lollies methinks… 

Breast cancer lesson number 55: Celebrate your independence day!

On By Jackie ScullyIn Breast reconstruction surgeryLeave a comment

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

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

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

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

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

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

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

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

On By Jackie ScullyIn Chemotherapy3 Comments

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

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

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

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

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

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

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

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

You wait. My hair will start falling out now… 

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

On By Jackie ScullyIn Reflections on cancerLeave a comment

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

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

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

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

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

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

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

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

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

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

Breast cancer lesson number 52: The memories do fade. Let them go

On By Jackie ScullyIn Breast reconstruction surgery, Chemotherapy2 Comments

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Walking through Greenwich Park on Sunday with Duncan, I started laughing when I remembered that only four weeks ago, I wouldn’t have been able to get to the park – let alone walk round it. It’s hard to imagine now that walking to the lamppost up the road was once comparable with climbing a mountain. It’s also hard to imagine that the train station once felt like it was on another continent, not at the back of the garden. What a difference a few weeks can make.

The great thing about the human body is that it not only has an amazing ability to regenerate and recover, but it also knows how to forget. While I can remember that there was post-surgery pain, I couldn’t describe it to you now. While I thought the fertility injections were at times relentless, when I threw away the last of the instruction leaflets yesterday, I didn’t even flinch. While at the time important, every procedure, every painkiller and every appointment is now packed away in the bit of my mind marked ‘experiences’. I can draw on it, but it neither haunts nor upsets me.

That, in my view, is how I am coping with this entire period and managing to smile through it all. I am neither particularly brave nor strong. My body just forgives me for every needle and enables me to forget. Every day brings with it a whole raft of new experiences, and my mind is so busy filing, it won’t let me dwell on each one. It just lets me get on with moving forward and confronting the next challenge. Thanks body. You may occasionally throw me a serious curveball, but you are pretty amazing when it comes to helping me overcome each one.

In Lesson number 19, I talked about cherishing those small victories and getting to that first lamp post (which will always have a special place in my heart). Six weeks on from surgery, today is another day for celebrating a small victory. Today is the day I get to remove my abdo binder, lovingly known as ‘the body corset’. For six weeks, it has been an extension of me. For six weeks, it held me together (literally), made me feel like my body wouldn’t rip open, stopped me eating in large quantities and forced me to get to know the location of pretty much every public toilet in the local area. Now, having been upgraded to ‘Bridget Jones’ knickers or ‘magic pants’, I couldn’t be happier.

While I wouldn’t wish for anyone to have to be held together by three strips of Velcro, I have to say, body corset and I did become friends. It made coughing doable, laughing bearable, sleeping manageable and moving around, a lot more enjoyable. It is also the reason (along with tummy tuck surgery) that I now have the flattest stomach ever! I am sure it won’t last long, but, while it’s there, I am going to celebrate it. Thank you body corset. We’ve had some good times. You do look a bit tatty now and I am sure I will forget what it felt like to live with you attached to me. But, you did well, and you’ll remain a fond memory, tucked away in the ‘experiences’ vault forevermore.

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It may have done its time, but the body corset’s days are not yet numbered. First, it will be making an appearance at my first few pilates classes over the coming weeks, to ease me back into the exercises. A nurse also recommended I hang on to it so that should we ever be able to have children, it would encourage my tummy to go back to normal post ‘push’!

Writer Aldous Huxley once said: ‘experience is not what happens to you; it’s what you do with what happens to you.’ I think he was right. Whether you are undergoing treatment right now, are years on from treatment or facing challenges in another area of your life, I want to leave you with a thought. Whatever pain or sadness you are feeling right now, just know that it will fade and you have the power to forget. Don’t cling on, just let your body do what it does best. It will get you through it – and out the other side.

Let your experiences make you stronger, but don’t ever let them hold you back.

NB: As a quick aside, if you’re wondering how the post-chemo days are going, I’m doing pretty well. A few steroids highs are helping me stay positive and I’M STILL SMILING! A nurse called me yesterday to check on me and did warn me I may crash after the course of steroids ends, but while I am up, I am going to embrace it.

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…