Tag: Jackie Scully breast cancer

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

On By Jackie ScullyIn Breast reconstruction surgery, Chemotherapy2 Comments

Image

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.

Image

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

Image

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

Image

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?!

Image

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.

Image

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).

Image

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

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

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

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

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

Let the destruction begin…

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

On By Jackie ScullyIn Chemotherapy6 Comments

Image

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.

2014-03-29 16.52.24

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.

2014-03-29 17.06.062014-03-29 17.07.142014-03-29 17.07.40
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!

Breast cancer lesson number 45: If it helps, pass it on

On By Jackie ScullyIn Chemotherapy, Happiness, Kindness4 Comments

Throughout my life, whether it be guide camp, bikram yoga, school, work or swimming, I have always been the one to look the part. If it comes with a kit list, I am in my element. And, if it doesn’t, I will feel duty bound to create one. I buy the t-shirt and, eight times out of ten, I do detach the price tag! (One notable exception is a yoga top that I know would be guaranteed to put people off their postures. I like to look the part, not get arrested!)

The same goes for cancer. Our house is packed with every factsheet and leaflet going. Given the seriousness of the illness, I didn’t think my old tracksuit bottoms and loungewear wardrobe were quite up to scratch. So, two weeks after being diagnosed I made a trip into central London to buy some new pairs (along with zip-up tops and button down nightshirts). I bought a White Company toweling robe because it was ‘essential’ and even found matching slippers to go with my hospital dressing gown. For the next stage, I already have the hats on order, ginger tea in the cupboard and udder cream on the bathroom shelf. I have booked my ‘wig referral’ and my PICC cover research is also well underway. That chemo chair is coming, and I want to be ready!

Something wonderful happened to me yesterday while trying to compile the ultimate chemo kit list. First, I posted my chemo queries on a secret Facebook group (it’s called the Younger Breast Cancer Network (UK) and it’s open to any young women with a breast cancer diagnosis). Within minutes, there were so many great recommendations posted (from ice pops to boiled sweets). Then two women sent me private messages offering to pass on both unused and rarely worn items (that probably seemed like essential purchases at the time). When I received these messages I was so touched by their thoughtfulness. I was also reminded of the fact that I am not alone in my desire to stock up and take the ‘Be prepared’ Scouting motto to extremes!

A lot of the time, what we’re buying is specific to the treatment we’re having. In truth, I probably won’t need a sleep cap again and there is such a thing as too many headscarves. I will try and be inventive in redeploying the more fabric-based items, but I was inspired by these women (my latest kind strangers) to think about how I might ‘pass it on’ too. In lesson 37, I talk about the concept of ‘passing it forward’ and starting a chain of kindness. I would like to think when my caps have done their time, they could be warming someone else’s head. I would love to imagine someone getting joy and a self-confidence boost out of one of my summer caps (that have admittedly not made it onto my own head yet). I would also like to think that I could share more than words with others facing up to a breast cancer diagnosis.

In both cases, I have accepted their kind offers. In return, I have asked each one to nominate a breast cancer charity so I can make a donation. I plan to pass on the items that have made me smile (or brought me relief) when cancer has had enough of me and I would encourage anyone reading this to find a way to do the same. While I am not geared up to be the cancer equivalent of freecycle (or a cancer swap shop), I would like to think I could help you find a new and loving home for your cancer cast-offs (there’s a swap shop in the secret group for starters on which I could post items). If you have something to share and no one with which to share it (or are a hospital or charity looking for donations of drain bags or other treatment-related items) please post here or contact me directly (see Get in touch for more details). Together we can share the love – and the expense!

Second-hand comes with a story attached and that thought makes me smile.

Breast cancer lesson number 44: Living with cancer doesn’t just mean being treated for it

On By Jackie ScullyIn Reflections on cancer1 Comment

It’s official. I am being stalked by cancer. It is not enough for me to be diagnosed with the illness. Everywhere I go, I am bombarded with adverts, campaigns and television plot storylines. I can’t even go on Facebook without seeing the latest no make-up selfie. I keep asking myself has it always been this prevalent? The answer is probably yes. I just wasn’t looking.

Have you ever found that when you learn about something new, you suddenly find yourself seeing it everywhere? For me, it started with a train journey after biopsy day. Suddenly, it seemed every carriage brought with it a message about cancer. After I was diagnosed, I felt like every advert break on TV was talking to me in some way. Is it strange that the first film I watch on returning home from hospital ends up with a bit of cancer at the end? Is it stranger that the book my mum was reading at the time took a turn towards breast cancer halfway through? Even the TV soap Eastenders decided to get in on the action – just as Hayley was saying her goodbyes on Coronation Street.

Interestingly, I am not alone. Apparently I am experiencing what is known as ‘frequency illusion’ or the Baader-Meinhof Phenomenon. What this means is that while you think you are seeing things more often, it is likely that whatever it is you’re seeing has been there all along. A lot of discussion on this subject surrounds the discovery of things that you’ve never heard of before (a town name or a song title for example).Ok, I appreciate cancer isn’t new to me. But, until 17 January, it was a generic term to describe a serious illness in different parts of the body. I have known loved ones who have been affected by it, but I wasn’t being reminded of it every day. My cancer radar is now in overdrive. Trust me, if there is a cancer story out there, I am probably going to be drawn to it.

With cancer constantly beating a drum in my head, I have been truly touched by the stories of those undergoing treatment and the way in which people have chosen to raise awareness. Only last night was I watching an inspirational BBC3 programme Kris: Dying to live about Coppafeel founder Kris Hallenga. Diagnosed at 23 with stage IV breast cancer, she has had to learn to live each day with cancer as her boss. Now 28, I think she’s doing a pretty amazing job. Then you have Lisa Lynch. Soon to be made famous in a TV programme with Sheridan Smith playing Lisa, the dark humour in her book The C Word really moved me. While she may have lost her battle (after being originally diagnosed with stage 3 breast cancer), her story lives on through her words. She will continue to inspire those going through treatment and becoming all-too-familiar with hospital corridors!

The truth is, cancer is everywhere. It affects us all. One in three people will get it in their lifetime. Cancer stories move us because they’re real. They’re being played out in your next door neighbour’s house, in your extended family, at work or, even worse, at home. We are all living with cancer and the more stories that can be told, the more awareness we can raise and the more comfort we can bring to those facing the illness.

As an aside, you may be wondering why I haven’t done a no make-up selfie yet. Initially troubled by the whole concept (my blog is positive not political hence the radio silence), I was delighted to see how much money it raised. I have donated about three times already and am storing up my selfie for when my hair falls out (I don’t really wear make-up, so it would just be a picture of me currently, and nobody needs to see that). That is the true face of cancer and I’m afraid no amount of make-up will ever really conceal its effects (a good wig, yes, but more on that after wig shopping)!

Cancer, I’d like to think one day you will just be another zodiac sign. But until then, I say bring it on (not more disease, just stories)! I would like to be stalked. I want everyone to know just how mean you are. I also want everyone to know that while you do so much harm to this world, destroying lives and ripping families apart, you have inadvertently created millions of strong, beautiful and inspiring people. You should be recognised for your contribution to the arts, the amount of amazing words and films for which you are responsible.

Yes, it would be great to think we could live in a world without cancer plotlines. But, while there is cancer, I want to be moved and touched by each and every one.

Breast cancer lesson number 43: Cure, Help, Empower, Me to Overcome = CHEMO

On By Jackie ScullyIn Chemotherapy5 Comments

With the embryos now packed away in the freezer, one pixie haircut and one PICC line insertion are all that stand between me and chemotherapy. Cycle number one is planned in for next Wednesday and, I must confess, I’m already trying to imagine the side effects. Up to now, apart from a bit of pain, a lot of needles and enough drugs to stock a pharmacy, I have felt well. A week today, whether I like it or not, that’s all about to change.

They say the fear of chemo is often worse than the act of going through it. All I can say is, let’s hope they’re right (and that it’s not the cancer equivalent of ‘childbirth is fine’ so we all go into it with blind optimism). I have a rather vivid imagination and it’s currently in overdrive. This is in no small way to do with the consent form – or should I say dossier of potentially debilitating side effects. Beware drugs that come with consent forms! After seven pages listing out all the life-changing conditions I might end up with, it began to hit me that this is no normal prescription drug. This might actually be a bit grim.

For those wanting to know a bit more, chemotherapy is a systemic treatment using anti-cancer drugs. Its aim is to go after cancer cells in the whole body (not just the breast) and interfere with their ability to divide and grow. I will be going through what’s called adjuvant chemotherapy. This means it’s an additional treatment to reduce the risk of breast cancer returning after it has been removed (in some cases people have chemo before surgery – known as neo-adjuvant chemo – to slow the growth or shrink a tumour).

So, what awaits me in the chemotherapy chair? I will be undertaking something called the FEC-T regimen. First, I will enjoy three three-week cycles of FEC (lucky me). This is a combination of the following drugs:

1)    Fluorouracil (or 5FU)
2)    Epirubicin (a nice red liquid)
3)    Cyclophosphamide

Then, once I have got used to the way my body reacts to the above drugs, I will  move on to T or Docetaxel (one brand name is Taxotere, hence the letter T). This takes longer to administer and stays in the body longer (it gets better and better). And, I mustn’t forget the supply of anti-sickness drugs and steroids you get thrown in to keep said chemo drugs company.

In truth, the drugs are just words. It’s the list of side effects that leaves an impression. Everyone is different and no one knows how they are going to react. I know I’m strong, I know I’m positive, I know I will work when I can – and my consultant seems to think I’ll be just fine.

Bearing in mind, you probably wouldn’t take a paracetamol if you gave the pill packet too much attention, factsheets and side effects booklets are to be regarded with some caution. I will probably get some side effects, but if I get a lot, I will be more than a little unlucky and will be trading in my body for a better model at the next available opportunity.

The potential effects are many and varied. Rather than plough back through the consent form, here is my edit of the highlights (or lowlights depending on how you look at it):

1)    I will lose my hair: it seems the cold cap that is available will merely delay the inevitable, so I am going to lose my hair in style! Pre-chemo pixie is planned for Saturday and then, by the end of April, it will probably have disappeared. I am not particularly worried about this, am enjoying shopping for hats and am waiting for an opportunity to stand on a cliff with my bald head. Quite fancy not having to shave the rest of my body for months on end and it will, as a friend said, be interesting to see the shape of my head. My only fear? It growing back grey. At 32!

2)    I will get constipation: I doubt I’ll be able to beat eight days after hip surgery (not sure I want to try) so it will be back on the Laxido I’m sure. Whoop! You can also go the other way (now that would be a change!).

3)    I may get an infection: if my white blood cell levels drop, I will be more susceptible to infection. I plan to avoid the Underground where possible and have been acquainted with my new best friend, Mr thermometer. Apparently, if my temperature goes above 38 degrees, I will need to get to the hospital… and fast!

4)    I may vomit: having only vomited a few times in my life, I hope my strong constitution stands me in good stead. I certainly won’t be eating my favourite foods around the sessions, just in case I see them again ­– and then never want to eat them again. I hear the anti-sickness drugs can be effective but they can cause constipation (see 2).

5)    I may get fatigue: it’s fairly common, and the cumulative effect of all the treatment may take its toll.I plan to walk as often as I can and, of course, not operate any machinery if I feel tired (maybe just a kettle, a TV, a computer and a mobile phone).

6)    My sense of taste could change: I must say, I am intrigued by this side effect. Some say things taste like metal (yum) and others say they become addicted to sweet things. I better make sure I don’t overdo the baking, just in case. Let’s hope I don’t get too many ulcers and sores (another joyous side effect), so I can actually eat something.

7)    Docetaxel can cause bone pain: If it’s anything like my original hip pain or nerve pain, I will be willing these cycles to end!

8)    My hands or feet might start to tingle: This would be another treat from the wonderful T and is known as peripheral neuropathy. I am quite fond of my hands.

9)    Chemo brain: Chemo, if you’re listening, please don’t take my memory. I love remembering birthdays and running through my to-dos in my head. Take my memory and you take a big chunk of me. That’s not part of the deal.

All that, and I haven’t got started on heart problems, fluid retention, sun sensitivity, allergic reactions, blood clots, infertility or nail changes (or the side effects of Zoladex, the drug already in my system).

The truth is, by putting it out here in post form I wish to now close the A-Z of scary chemo effects. I will smile as the red liquid approaches. I will smile at my chemo nurses. I will smile as I write my first post-chemo blog. I will keep smiling until one of these things makes me smile no more.

As of this moment, I plan to take control of chemo. In an attempt to go down smiling (or better, not go down at all), I am in the market for chemo tips (I will write a post compiling them all later this week). Thanks to some beautiful friends, I have sleep caps, an inflatable bath pillow, nail varnish and queasy drops ticked off the list. I have senna. I have a toweling robe with which to dry myself and am on a mission to find the tastiest ginger nut. If you have a tip you think may help me stay strong and positive, please get in touch. I am willing to try, experiment and do anything (within reason), if I end up with a big smile on my face.

I was going to call this blog post ‘Know your enemy’, but when I finished writing it, I realised it’s wrong to call chemo the enemy. Cancer is the enemy and chemo is one of good guys (even if it likes to knock you down a few times along the way).

Here’s my deal. I’ll give you my hair, but you’ll have to fight me for everything else.