Tag: cancer blog

Breast cancer lesson number 164: Here’s to a little thing called progress

On By Jackie ScullyIn Moving forward, Reflections on cancer7 Comments

Now, if my email inbox is anything to go by – particularly following my brief appearance on the BBC 10 O’clock news on Monday night – I’m overdue an update. The one thing I didn’t think about when the TV crew came round insisting that I drink copious amounts of tea (oh, yes, they got the measure of me pretty quickly), was that the last time I posted a picture of myself publicly, I had very little hair. Now, however, while still short and not yet what you’d call a style, there is something resembling hair on my head. And, on Monday night, it feels like the whole world got a quick look.

To track my journey from bald chemo shine to, hopefully, a nice pixie crop and beyond (although I think I may be short forever now), I have been taking photos on the 18th of every month to celebrate being a month further away from my last poisoning on 18 July.

Here’s me in August (still bald with only the smallest amount of fluff and no eyebrows or lashes):

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Here’s me in September (with something darker than chicken fluff and a few stray eyebrows and lashes)

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And here’s me just a week ago (with what I can only describe as a silky carpet of hair in a colour yet to be fully determined – plus eyelashes and a disorganised eyebrow).

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I am delighted to report that Susie the wig is tucked away, the hairloss hats are waiting to be packed up into my cancer capsule (see lesson 158 to find out more) and I even got to towel-dry my hair the other day. If that isn’t progress, then I don’t know what is!

And that’s not all. Also deserving of a mention in these post-active treatment headlines is the exciting news that I today applied my first bit of mascara. Yes, it was hardly noticeable to anyone but me (and only because I applied it), but to me, it was yet another step away from the life that cancer tried to control. And, I am back to my pre-surgery, pre-Christmas 2011 weight. Every teeny weeny bit of progress gives me a reason to smile. And I am keen to do a lot of smiling over the coming weeks and months.

Of course, there’s still a way to go with the hair (any winter hat recommendations would be gratefully received), the hot flushes (the return to work means I am frequently sweating through my clothes on the tube), the sleep patterns (although the cold helps), the tiredness (am not sure it is fatigue but the yawning is constant) and the peripheral neuropathy (these weird hands and feet sensations are a little troublesome). I also still feel like I’m on a timer, trying to squeeze everything into my life before my sand runs through. But, I’m getting there – and that’s all that matters.

And, I’m ready for my next challenge. A trip to the swimming pool tomorrow…

Wish me luck!

Breast cancer lesson 157: It takes time to heal

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

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

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

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

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

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

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

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

I hope you’ll give me time too.

Breast cancer lesson 156: You can face any bend in the road, if you have the right people holding your hand

On By Jackie ScullyIn Happiness, Kindness, Pink hearts, Reflections on cancerLeave a comment

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For the last nine months, our living room has resembled a rather niche card shop. Of course, it started with good wishes for our engagement – and what wonderful wishes they were. Then, mid-January, there was a sudden shift to post of the ‘get well’ kind. Throw in the odd teddy bear, a few Happy Easter cards in April and a steady trickle of notes and messages throughout active treatment and you’ll get the idea.

Starting each day surrounded by a wall of words has been a real boost for me. Never far from a message of encouragement, these notelets and cards have been a constant shoulder of support, a reminder of all that is good in the world and a sign that, wherever you are, you are never far from people who love you. These words have moved me deeply, made me smile, made me laugh out loud, made me cry, made me pick up the phone and get on a train (to make contact) and given me the chance to reflect on the happy memories I have already banked over the last three decades. That’s why I haven’t moved a single one (even to dust)! And, that’s why, it’s a massive step for me to even contemplate taking them down (might actually have to get out the polish).

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Apart from the genuine kindness shown by these handwritten gestures (I am a big fan of all things handwritten), the main thing that has struck me about this word-filled wall is that I have often under-estimated just how powerful a small gesture can be. For starters, I now fully appreciate the excitement of hearing the post land on the doormat. I now see how a well-written card has the power to change the course of a day. I also now realise that the cheery post-its I used to leave on colleagues’ desks, the handmade gifts I have posted, the acts of kindness I have delivered and the messages I have written over the years have really meant something to the recipients. People have written to me about events and gestures that at the time didn’t seem significant. I now know just how much those gestures meant and, having been at the receiving end of an awful lot of kindness myself, it’s not something I will ever forget.

What is so exciting about the fact I have kept the shelves stocked with well-wishers is that I now – as part of moving forward – get to take them down and re-read the lot. I imagine there will be more than a few tears as I relive all the hugs, positive vibes and amusing memories.

Of course, I won’t be recycling them. I will pack them away, so that I can one day be reminded of just how lucky I am to be alive and to have an amazing group of people with which to share my life. Until then, I know the memory of them will live on long after they have relinquished their spots on our dusty shelves. And, excitingly, I have just received a few amazing congratulations cards (like this one), which means the shelves won’t be completely bare!

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When you have one giant paper-based hug on tap, thoughts of giving back and ‘paying it forward’ are never far away. That’s why I started my pink hearts campaign and why I now have lots of reasons to seek out and spend time with the people that have shaped my life and made me who I am. So far, I have delivered more than 20 fluffy hearts and messages to special people across the country (in no order of priority) and I am excited about the packages I have left to deliver. It will a take years, but years packed with special moments sounds pretty good to me.

I have set up a pink hearts page here on my blog, because I hope that this little initiative inspires others to reach out to the people they love. The idea is simple. First, make a pink heart (I have adapted a Kirsty Allsopp design for the purpose). Next, tuck it inside an envelope with a message explaining what to do with said heart along with a personal and heartfelt note describing just what that person has done for you. Then, hand-deliver that heart to that person. The catch? Each recipient shares their address (except for hospital staff because I don’t want to appear stalkerish) so that I can a) update my address book and b) send them a little surprise gift sometime in the future to remind them of the importance of seizing the moment and looking for the beauty in each and every day. I know that the heart will fade, but I hope the message lives on forever.

It is a sad fact of life that it takes a serious illness for us to say what we mean to each other. And, this is something I want to change. I have been writing this blog because I want to use my experience to help others. If, through one illness, we all learn to say what we feel and tell those around us how important they really are, I feel I will have made a positive difference this year. If I’ve been put on this earth to spread the love, then spread the love I will.

Whether you sew a pink fluffy heart, or pick up the phone, now is the time to get in touch. Tell loved ones what it is about them that makes you smile. Tell friends how they have made a difference to your life. Tell them, because otherwise they may never know how much they mean to you.

I don’t want you to wake up one day and feel like you’ve missed the chance to make a difference. I want you to look for the good in others and celebrate it when you find it.

We, none of us, know what is around the corner. But, if cancer has taught me anything, it is that you can face any bend in the road if you have the right people holding your hand.

Thank you for everything. You know who you are!

NB: Given the volume of notes I have received, I do have a fairly good grip on the get well card market in general, so do get in touch if you’d like some recommendations.

Breast cancer lesson 154: Believe you can and you’re halfway there

On By Jackie ScullyIn Charity, Happiness, Reflections on cancer1 Comment

What makes a great Sunday? Giant boob costumes, pink headbands, a cling-filmed rads-blasted boob, running shoes, a dose of determination and a celebratory pub lunch that’s what!

Yep, that’s right. We completed the 10k. And, with balloon-filled boobs on our backs, we did it in style.

Thinking back to yesterday’s aims, I am glad to report I finished in one piece with no missing body parts and we (by which I mean Fran, Sam and I as Duncan was up with the ‘running elite’) shaved off 12 minutes from the chemo run time. I think it’s fair to say when I pushed for the finish (I even had a bit left in the tank after three hills) imagining all of the amazing people fighting cancer on a daily basis – and all of those who have supported my fight – I couldn’t have been happier.

Thank you for believing in me, running with me and pledging drinks to help me raise money for such an amazing cause. I couldn’t have done it without you!

This is one finish line I won’t ever forget. Just one more active treatment finish line to go… tomorrow.

One sleep to go!!!!!!!!!!!!!!!!!!!!!!!

Here’s the photographic evidence:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In truth, nothing will ever taste the same again.

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

Breast cancer lesson number 103: Tax by name, taxing by nature

On By Jackie ScullyIn Chemotherapy3 Comments

Chemo drug Docetaxel (which sounds more like a dinosaur than a toxic infusion) certainly lives up to its more commonly used name ‘Tax’. The side effects appear deliberately complicated, just the mention of it makes most people go a bit pale and the administration of it usually brings about pain. Whether you’re paying it, or receiving it intravenously, tax is no fun.

It started so well – although I think this had more to do with the extra helpings of steroids, which did give me the feeling I could take on the world (or at least the kitchen floor)! There was no nausea (thank you Emend). And, for the first 48 hours I had little more than mini bouts of fatigue, disturbed sleep, hot flushes and a general sense of unease. I had started to think we were going to get on.

Then, at around 4pm yesterday afternoon, the picture changed. All of a sudden, I went from Duracell bunny to flat battery. I lost my taste in the space of about half an hour. I ate early, was in my pyjamas by 6pm and drifted through the last Harry Potter film before making it to bed at a less-than-respectable 8.30pm. I had my first bone pain inducing injection. I wrestled with the bedding, got hot, got cold, got stiff, got up and eventually rolled out of bed when I couldn’t think of anything else to do to get comfy.

Six hours on and I am still trying to work out exactly how I feel. Strangely, it’s like my limbs feel heavy, but my body feels empty. I’m finding it hard to focus and everything from my back and my boobs to my sternum hurts a little bit – like someone is slowly tightening a band around me. I’d like to say I was having a nice time sat here in the garden with the light breeze on my neck. But, it’s not particularly fun.

And, the worst part is, I’m not sure what’s round the corner. I know there are another seven injections to come in this round and that injections mean pain. I know the steroids are over so there is nothing to help me with the housework or the cooking (when my lovely mum heads home). And, I now think I know what chronic fatigue is really all about – and I really wish I didn’t.

I’ve been warned that this drug is tough. All I’m hoping is that I am just that little bit tougher!

I think it’s going to be a long week!

Breast cancer lesson number 66: Always look on the ‘brighter’ side of life

On By Jackie ScullyIn Brighter Life List, Chemotherapy, Happiness2 Comments

What better way is there to spend an Easter Saturday than up a cliff on the Dorset Coast path? When the sun went in it was quite bracing, but with the wind on my face and running through my tiny strands of hair, it was a wonderful reminder of all that is beautiful and wonderful in the world.

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Standing on a cliff with no hair is number 17 on my ‘brighter life list’. I still have hair around the bald patches (although a lot less after my latest shower), so it doesn’t quite score me my first tick on the list, but as a dress rehearsal, it was pretty exhilarating. If you are ever presented with the opportunity in your life (and I hope it has nothing to do with illness), I would encourage you to get yourself to a coast path – and fast!

If today didn’t remind you of how happy you are to be alive, then make sure tomorrow does. My brighter life list is about seizing the day and not waiting for happiness to find me. I’ve spent too much of my time wishing my life away. Now I want to cherish every moment.

It’s time to stop dreaming and start planning.

Breast cancer lesson number 48: Short-term pain, long-term gain

On By Jackie ScullyIn Chemotherapy6 Comments

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

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

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

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

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

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

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

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

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

Breast cancer lesson number 47: The importance of being normal

On By Jackie ScullyIn Breast reconstruction surgery, Chemotherapy, Happiness1 Comment

For those of you currently splitting your days between the waiting room and the living room, I am delighted to report that there is life beyond these walls. I have seen it. I know it’s hard to imagine. But, it’s still there, being interesting, just like you left it.

The truth is, daily walks, daily planned-in box set viewing and almost-daily hospital visits – although vital for post-surgery recovery ­–­ do not a life make. In recent weeks, I have felt more like an observer on my own life, rather than a participant in it. If health allows, however, and you are brave enough to open the door to the other side of you (the pre-cancer normal), I would encourage you to do so – right now.

By normal, I don’t mean dull. By normal, I mean the bits of life you enjoyed before cancer swept in and took them away. Yes, be selective (you may wish to live without the ritual of Friday night pizza). Yes, make adjustments (I am seeing more friends and having more laughs than ever before). But make normal your base and, you’ll find it’s the hospital appointments that start getting in the way – not the other way round.

Since the day I was diagnosed I have made a conscious effort to not be a cancer patient (she says writing a blog on the subject!). I don’t want to hide away with only my thoughts for company. I don’t want to be defined by the clinic and chemo dates in the diary, because I know that when the dates stop coming, life can go from being very busy to very lonely overnight. I want to use the time cancer has inadvertently gifted me to cherry pick the bits of life I love and shut the door on everything else. There’s a lot of truth in the phrase, ‘you are what you do’. Give yourself over to cancer and you’ll forget the life you’re fighting for.

The great thing about rediscovering your ‘normal’ is that something you’ve taken for granted for years suddenly becomes more exciting and beautiful. Take Thursday night. I had a theatre date in the diary and I was determined to keep it. It’s probably worth mentioning at this point that my taste in theatre is acquired. While I do love my musicals, a bit of Shakespeare and the odd sedate play, I also like to explore the world of immersive and promenade theatre. Those of you who know me well will know I’ve been kidnapped by vampires in Barbican car park, sent on a mission underneath Waterloo station and electrocuted (mildly) in the name of art. If it’s rather strange and often devoid of a coherent plotline, I’m there.

While I was making my way to Shoreditch Town Hall basement to watch Philip Pullman’s Grimm Tales, I was trying to remember why it was I’d booked it in the first place. As I approached the theatre it hit me – or should I say the wording on the poster did. It was immersive. That meant involvement. Instead of my usual nervous excitement, I suddenly felt completely vulnerable. I didn’t look even remotely ill, so how would I be able to keep my arm, boob and tummy protected when surrounded by focused actors and curious theatre-goers. I didn’t feel ready.

The great news is, that rather running for the exit – or back stage to find someone who could furnish me with a big ‘don’t touch me’ sticker – I grabbed a glass of wine and had a wonderful evening with a friend. While I would have loved to have found a seat in each of the rooms and, while I slept well that night, I found being at an event where only one other person knew what was going on beneath my clothes really exhilarating. Cancer wasn’t centre stage and, you know what, I loved it.

Of course, there is a small note of caution. It is worth remembering, you’re still not normal, even though you’re playing the part. I was reminded of this on Friday night when having a takeaway with friends at home. I ate my usual healthy (or not so) Jackie-sized portions (at my usual fast Jackie pace) and enjoyed some of our engagement Champagne and wine. It was only later that I realised the body corset/curry combo was not a particularly good one. I didn’t enough have space for water and was still reliving the experience 24 hours later. A few less mouthfuls and a lot less speed, and I would have been fine.

People talk about discovering their ‘new normal’ after finishing active treatment. I have around six months to go and think it is important I use this time to go back to my version of normal so that I can work out what I want my ‘new normal’ to be. I know it will include a hair cut every eight weeks (once there is something to style. I am already craving the smell of product knowing I won’t be there as a client for a while). I know it will include immersive theatre. But I know it will be different. It has to be. There are already 40 things on my Brighter Life list for starters and I am determined to complete each and every one.

I know it will be busy, but I know it will be better. And, there won’t be a single cannula, oxygen mask or blood pressure cuff in sight.

 

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

On By Jackie ScullyIn Chemotherapy3 Comments

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

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

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

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

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

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

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

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