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

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 40: Cancer treatment is like a punishing endurance challenge. Savour those checkpoints

For me, breast cancer treatment is a five-stage race. First, you lay down on a slab and get rid of the troublesome cancer. Stage one, tick (if we ignore the fact I have to get a little cosmetic adjustment at some point in the future). Next, you get to store some babies in the freezer. Stage two, tick. With fertility over, your veins get a high dose of body-killing (or life-saving) chemo drugs. Stage three, tick. Once your body has started to recover, you get a blast of high-energy radiation. Stage four, tick. Then, if you’re still standing, you say goodbye to daily hospital visits and hello to daily doses of oestrogen-blocking pills. The finish line is currently scheduled for some time in 2019, and I have no plans to go back in training after that! After that, the only races I’ll be tackling will be charitable ones!

Tomorrow is the end of stage two. That makes it a special day (one refreshing checkpoint in this epic race). With the end of stage three planned for mid-August, it will be a while before I once again feel like I am one stage closer to the home straight. Chemo is a long stretch and I know I’ll need all my energy just to get to the end.

I have to say, sitting here with a bloated stomach that makes me wants to live in the toilet, tomorrow cannot come soon enough. I certainly don’t think a body corset, tummy scar and enlarged egg-stuffed ovaries – combined with a functioning bladder and stomach – belong together. I feel like someone is bouncing on my stomach and there isn’t enough skin to go around. Starting to find the idea of a needle in my ovaries rather attractive.

What did I feel like after completing stage one? First, there was pain. Then, there was immense relief. I’d like to say I was dancing around my hospital bed. But, let’s face it, I could barely stand. How do I think I will feel if we are lucky enough to pop some embryos in a freezer bag? First, I will be happy that the baby back-up plan is in place. Then, relief that I can walk from the living room to the kitchen without needing a wee. (I also quite like the idea of a fridge that isn’t full of syringes and vials.) Neither of these sound like great moments of celebration or markers in history. But, when there is life at stake, you’ve just got to be happy you registered for the right race and are running in the right direction.

Cancer checkpoints don’t come along very often. When they do, whether you’re on morphine or Merlot, you’ve got to grab them, get the most out of them and use the happiness (or relief) they bring to take you forward into the next stage. I may be more likely to be raising a mug of tea than a glass of wine at the moment (last night aside), but I am determined to make sure each one of these stages does not go by unnoticed (I think a lot of people design a sign to mark their last chemo session, so that’s on the to-do list for stage three). You may lose a few consultants and nurses along the way, but that doesn’t mean there are any less people rooting for you to succeed. There are just a few less appointments to attend, a few less needles and a few less worries to occupy your fact-filled mind.

This is a race I will complete – and there will be a big smile waiting for me at the finish line (and probably one of the many bottles of engagement champagne currently gathering dust in the cupboard). I am not going for a personal best and there won’t be a medal at the end of it, but there will be life. I hope you’ll be there to cheer me home. 

Breast cancer lesson number 32: Dust off your satchel, you’re going back to class!

With the volume of tests, examinations and terms to commit to memory on a daily basis, you could be forgiven for thinking you signed up to a course – not a course of treatments – on diagnosis day! Cancer, do you really need your own curriculum? And, do we all have to be graded?

Breast cancer is the biggest module you’ll ever take – and not one any of us would wish to retake or even fail. For starters, it has its own language. You may not have to get the grammar – and you’ll be forgiven for misplaced capitalization – but once ‘benign’ becomes ‘malignant’, it’s best to reach for the dictionary – and fast.

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First there are words that cancer has deemed appropriate to rename. I think armpit is a fairly straightforward word, but cancer thinks it should be something a bit more technical. Enter ‘axilla’! Having been acquainted with my lymph nodes for the first time, it didn’t take long to work out that they are also referred to as lymph glands or axillary nodes (when under the armpit). Why opt for one term, when three will do! And, did you know, far from just having a boob job with tummy tuck and node removal, I actually had a mastectomy with removal of the areola followed by a deep inferior epigastric perforator flap with axillary clearance? Put like that, I am exhausted just saying it, let alone recovering from it!

But, that’s not all. Once you get over the fact things have three names and that once you become familiar with your armpit, it becomes something else, stage 2 of the cancer curriculum gets thrown in. And, by stage 2, I mean acronyms. Navigate the CT, choose between the WLE and the MX and then you get to find out your ER status and whether or not you are HER2 positive (all of which is discussed at length at an MDM). That’s before you get inducted in the language of chemo (FEC, FEC-T, CMF and AC anyone?). My absolute favourite so far: FISH. Don’t be fooled into thinking it has scales and eyes. FISH actually means ‘Florescence in situ hybridization’, which is a way of measuring HER2 levels in cancer cells. Not tasty, and certainly wouldn’t go well with lemon.

Armed with my Breast Cancer Care glossary (thank you so much for creating this superb revision guide), I am transported back to the days of French A-level revision (although without the lovely nightly walks with my parents throwing around vocab). I have always liked vocab tests and like to think of myself as a cancer codebreaker. But, when it feels like you’re being home-tutored in a class of one, and you want more than anything to pass with flying colours, the pressure really is on!

Breast cancer has its very own secret after-school club. And, if you know your MDM from your MX and your DX, then you’re in (whether you like it or not). You often won’t be able to spot a breast cancer patient, but just know that there are people all over the world with new boobs (or adjusted ones) all trying to revise harder than they ever have before.

This time, it’s not about getting top grades (nobody wants a high grade cancer). It’s not about getting a certificate and a gold star (although I wouldn’t say no). This time, the reward is life – something definitely worth dusting off the satchel for!

Breast cancer lesson number ten: There is such a thing as a cancer survival kit

Aristotle was a clever chap. In one of his works On The Heavens, he said: ‘it is not once nor twice but times without number that the same ideas make their appearance in the world’. Basically, if you think you’re being original, think again.

Every day, someone is taken into a room and told they have cancer. Every day, someone starts out on a journey, looking for their own ways to find strength and keep fighting. Every day, someone learns a practical tip that is new to them, but that has been discovered thousands of times before by other inspiring people determined to tackle this frightening disease head on. So, today, I want to share a few of the tips that have already made an appearance in my cancer story, so that you – or someone close to you – can get a bit of a headstart.

If every cancer sufferer were able to pass on just one tip to those newly diagnosed, there would be a few more smiles in those hospital waiting rooms. That’s my aim. I am a great believer of strength in numbers. Together, we may not be able to stop cancer affecting our loved ones (I think the experts are doing an amazing job of that). But, by sharing our knowledge, we can make the journey a much more comfortable and bearable one. Happiness is infectious, so help me start a pandemic!

The day after diagnosis day, I made a decision. I didn’t want pity. I didn’t want sympathy (although hugs are lovely). I wanted tips – and lots of them. Since then, I have been inundated with thoughtful messages. In just a few weeks, I have been inducted in the benefits of acupuncture, emotional freedom therapy, life coaching, mindfulness and massage. I have accepted every offer of help (NLP next week) and I feel great – in fact better than ever.

So, here’s the first installment of my cancer survival kit. One small caveat. This is not a substitute for a patient checklist and you may disagree with some of the below. This is me, just trying to be helpful and pass on the kindness of others. Don’t worry, I’m not on commission!

Work out what sends you to sleep now: ok, so this isn’t rocket science, but after having had an irrational fear of dying for the first five days after being diagnosed, I realised quite quickly that, without sleep, I was pretty useless. So here’s a quick tip for you. There are loads of apps and CDs out there to help you sleep, so start experimenting. I have already tried Patrick Browning’s apps as well as a great disk from a psychotherapist friend. I love lying in bed, focusing on different parts of my body, tensing them and releasing them (it feels like they are sinking into the mattress when you let go). Even if you can sleep now, it pays to be prepared.

Talking pillows are great: so listening in bed with headphones on is not great. I went to bed the other day, drifted off and was then jolted awake by a loud piece of music. That’s where a Sound Asleep pillow comes in. It’s a speaker, it’s a pillow, it’s a revelation. In short, it means I can drift off to sound of peaceful chants without Duncan hearing a word. A thoughtful gift from a thoughtful friend.

Protect that boob: I was amazed when a friend at work presented me with what looked like an oversized jelly bean. It was, in fact, a Tender Cush pillow to help me feel comfortable at night and sleep on my side post surgery. Of course, I haven’t put it to work yet, but it is so soft and should be pretty handy.

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Post-surgery bras aren’t just for those with a breast prosthesis: best get a specific recommendation from your breast care nurse, but I wouldn’t have known to ask if some kind soul hadn’t pointed it out. I went to Royce (shop online as the experience of shopping for post-surgery bras on the high street is quite disheartening) for mine and was quite taken with one that says it has healing fibres. I have heard that underwires may be out forever for those who have had reconstruction. Is that true? Can anyone confirm or deny? And remember no VAT to be paid on these beauties!

Buy big knickers: a DIEP surgery recommendation (as discussed in lesson x). They’re really big, they hold it all in. Let’s move on… No photographic evidence required.

Don’t forget to accessorise: I must confess, a bag for carrying around one of my four drains didn’t even feature in my initial hospital kit list. It was only when a friend asked me about them – and I then saw a lady in the hospital carrying one – that it got a look in. Imagine my delight when two handmade bags arrived through the post yesterday from a wonderful friend. The only trouble is, they are far too beautiful to waste on a drain!

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Lip balm and wet wipes are an in-patient’s best friend‏: standard stuff, worth remembering. Bit like preparing for a camping trip – just a lot less fun. No scent, no sting!

Power up: one worry I have is keeping my mobile phone charged when going in hospital. With my right arm compromised due to the lymph node clearance, I think turning around to plug in a charger might be a bit too energetic. Fear not, there are some pretty great external power packs on the market that will charge your phone many times over from the comfort of your bed. Mine has so many different phone and device connectors I reckon I could power the ward!

Reevaluate your wardrobe: apart from my coat and the odd shirt, most of my clothes involve some sort of body contortion when dressing. That’s why I’ve spent the last few weeks stocking up on new navy and pink items to help me feel nice – and not naked. If it zips up or buttons down, it’s in. I have also replenished my stocks of tracksuit bottoms, given most of mine are covered in paint from decorating last year. Not sure the nurses would approve of those.

Don’t be afraid to ask: whether it’s from a breast nurse, amazing charities, such as Breast Cancer Care and Macmillan or fellow patients, ask away! There are superb booklets on offer covering everything from fertility and chemotherapy to specific types of drugs. Macmillan also produce a great Feel More Like You booklet. You can order them online, so keep donating, so they can keep producing and posting them!

Ok, so this is not an exhaustive list, but it’s a start (there are plenty more, but don’t want to blow your mind too early on). Plus, I didn’t think it would be right to talk about health foods, when I am currently feeding my new boob (AKA the tummy) a lot of unhealthy things. Read it, share it and please add tips here if you want to pass on your great advice.

This my little way of giving back, before I get started. Thank you to all those who have contributed to the cancer survival kit so far. Let’s hope it keeps on growing.

Every cancer journey is different. But, chances are, someone out there has a tip to help reassure you it’s all going to be ok.