Breast cancer lesson 176: a cancer diagnosis brings clouds, but it doesn’t have to block out the sun

On February 22, 2015 By Jackie ScullyIn Baking, Chemotherapy, Moving forward, Reflections on cancer3 Comments

There is something quite sobering about reading back over my diary from last year (I only write a line a day but, in some cases, that’s enough to conjure up some pretty strong images) and reflecting on the entry for 21 February 2014.

Sitting down to write last night’s entry (I cooked for friends, so it was more about wine and a cake that accidentally resembled a boob than it was morphine and NHS mash) I knew it would be a world away from this: ‘Short in terms of length, but long in terms of getting the cancer cut out of me. Boob off, tummy out, boob on. Humour can get you through a lot.’ (Ok, slightly more than a line, but you get the picture.)

You could say it was the most memorable day of 2014. But, with the quantities of general anaesthetic involved, it was also among the most forgettable. One year on, I think of it as the day I lost a boob and found myself, the day that reminded me of just how fragile we humans are and a day that taught me that life is too short to spend it among the clouds, when there is blue sky all around.

The cloud metaphor for me is a strong one and one that I saw neatly captured on a mindfulness animation the other day (I am doing a mindfulness course currently, but that’s a whole other story). Imagine a bright, clear blue sky, a sky that is calm and uplifting (sounds like a good sky to me). Then imagine that sky filling with clouds (of the light and fluffy and grey and stormy kind). These clouds represent our thoughts, helping to block out the blue sky with imaginings that are often far worse than the reality that follows. The secret in life is to remember that thoughts are just clouds. They drift in and out, they don’t last forever and, while you may look at them and see them as colouring your day, your mind can (just like a plane climbing through the sky) break through that blanket of grey and find the blue sky again (it’s always there, but our thoughts often make it harder to find). A cancer diagnosis will always bring with clouds, but it doesn’t gave to spell a change in the weather.

It’s hard not to see the blue sky when you’re celebrating a year being cancer-free! How to mark such a significant first anniversary? With another first of course. This time in the form of my first haircut since the pre-chemo pixie. Goodbye natural but Frodo-like locks and hello beginnings of something I might one day refer to as a style.

This is where is was before the chop:

And this is the ultimate aim:

Bit more hair, bit less forehead required!

The experience itself was lovely. Conditioner (my hair rarely needs washing let alone conditioning now), a hair brush being passed through my short little locks and the feeling of someone else taking charge of my wild look was a real treat.

But that’s not all. Friday was dinner and laughs with a great friend (something I am doing more of now after reconnecting with lots of people last year). And, Saturday was a day in the kitchen surrounded by proving bread, homemade pesto and a white chocolate bombe.

These last few days have been a celebration of the things I love to do, my way of thanking my body for surviving eight hours on the slab and coming out smiling – and thanking some of those around me for coming along for the ride. And the great thing is, my stomach is flat enough to not feel guilty about having a second slice of cake for dessert.

So, whatever you’re doing today, I invite you to look for the blue sky (difficult in the UK, I know). Acknowledge those clouds, but acknowledge that they don’t have to define a day, but can actually make the blue sky even more vibrant.

Breast cancer lesson 170: Tis the season to wear winter hats

On December 1, 2014 By Jackie ScullyIn Charity, Chemotherapy, Reflections on cancer2 Comments

It seems only fitting that my hair should be entering its ‘elfin’ phase as the season of advent begins. Anyone who knows me well knows that Christmas is my favourite time of year, so I am delighted that I don’t just have hair, but I also look the part. It isn’t yet in need of a cut, but for the first time in a long time, I don’t look like a sick person. And, you know what? That’s a great feeling.

People keep asking me whether I am going to go back to the basic bob I sported for a good six years. The answer? Absolutely not. While I think I need a little more up top so that Duncan stops calling me ‘boy’, I don’t think it will be too long before I am declaring my hairdo an official style. I would never have taken the risk and cut it this short had I not been forced into it. But, now I don’t think I’ll ever grow it long again. Wash and wear is something everyone should try!

It may sound strange, but when I look in the mirror and see my nearly-cropped-but-not-quite hair, I see a side to me I actually quite like. It’s a side of me that’s strong. It’s a side of me that knows how to fight. It’s a side of me that isn’t afraid to face the opposition in front of me. It’s still a little vulnerable and sensitive, but it’s a face that says if I can take on death, I can take on anything. And, now that I am firmly rooted back in the real life, it’s a face of which I need to be reminded.

There is another plus side to having short hair, however, that I hadn’t fully appreciated until now and the beginnings of what I call winter. With less than an inch on my head, even the hot flushes can’t stop me from feeling the cold. That’s why this weekend, I stepped out in my first ever winter hat that isn’t a bobble hat or knitted beret. Yes, with no pom pom in sight, it was just me and a winter cloche-style number. It’s not a hairloss hat. It’s a high street hat that I have the confidence to wear because of hair loss. Because, let’s face it, if you can rock bald, no other headwear will ever really raise an eyebrow!

The furry addition to my wardrobe is yet to make it off the coat hook, but I am excited to have progressed from tea cosy to something with shape!

I appreciate this isn’t particularly cancer-related, but after having had so much fun with Breast Cancer Care’s Headstrong service and enjoyed a summer season of head wear, I felt winter needed its moment in the spotlight. I am still in my summer scarf and coat, so hat wearing does constitute news in my book.

Talking of Breast Cancer Care, I have just enjoyed my first ever carol service in London – and what a wonderful service it was! Candlelight, beautiful singing, lovely speeches and even a tasty mulled wine and mince pie. It was on my brighter life list and I am delighted to have ticked it off!

Thank you to this amazing charity for the most magical start to advent I have ever had!

Breast cancer lesson 157: It takes time to heal

On September 20, 2014September 20, 2014 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.

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

On September 9, 2014 By Jackie ScullyIn Baking, Chemotherapy, Happiness, Reflections on cancer2 Comments

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).

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 147: Why I won’t complain about knotted hair again

On September 1, 2014 By Jackie ScullyIn Chemotherapy, Happiness4 Comments

One thing I really miss about having no hair is the hairdresser’s chair. I don’t miss the expense, or the fact I don’t have much glamorous chat (although I can hold my own when it comes to the latest on X Factor). I just miss the me time, the head massage while I’m having my hair washed, the ‘just-stepped-out-of-the-salon-you’ll look-like-this-for-five-minutes’ effect and the fact that, for at least 40 minutes, my image is in someone else’s hands. (I also miss the tea, the biscuit and the chance to read issues of Heat and Hello).

In truth, I have actually been to the hairdresser once since my number two back in April (although even that did not count as a proper appointment). Duncan treated me to a trip to the barbers (for him to get his haircut I hasten to add) on the way to a wedding last month. I remember chuckling to myself as I watched Duncan get his 10 minute clip, thinking that even in a barbers, I had less hair than everyone else. Thank goodness I had my hat on, so that they couldn’t see my ‘baby-like baldie’ look. Needless to say, I won’t be accompanying him again any time soon. It wasn’t much of a date :-).

I have discovered, however, that you don’t need a hairdresser to give your head a bit of pampering. You just need a ‘New’ bar from Lush. This red soap-like bar (that actually smells a bit like Christmas due to the cinnamon content) is apparently the answer to quicker hair growth. Whether or not it actually lengthens my locks remains to be seen, but it feels lovely to get lathered up and, with 80 washes per bar, it’s a pretty cost-effective pampering activity. I have heard that there are other shampoos that can prove useful in the hair growth department, so if you have had any success with a product, do let me know. I haven’t, however, heard of one that ensures your hair doesn’t grow back grey. It is hard to tell right now, but there is a lightness to it. Am hoping for blonde – or a good cut and colour before too long.

Of course, the shampooing has made the fluff I call hair stand to attention a little bit more, so I am sporting a bit of a chicken look today. I have been told that it is best to go au naturel and leave the hats at home to help encourage growth, so London had a good look at the fluff today.

With its ‘first-shampooing since April’ moment, Sunday was another of those mini milestone days I have been keen to celebrate. I am sure it won’t be too long before I enjoy my first hairbrushing day and even my first haircut. Life seems to be flying by at the moment and the idea that active treatment will be over in two weeks amazes me.

On the subject of haircuts, now I have fluff, my thoughts have been turning to post-chemo cuts. I feel lucky that I actually like short hair and get to experiment with all the styles I have also avoided (through fear of hating them and not being able to stick the hair back on). When you’ve hot no hair, having something to call your own is pretty exciting – although I know I have many more months of the GI Jackie look before anything resembling a style makes its way onto my head.

The style I do fancy is something resembling the look Brody’s wife opts for midway through season one of Homeland (yes, I appreciate I am miles behind). It’s a pixie with a longer bit on top (click here for a quick peak). For now, it’s just a dream staring out at me from the TV screen. I can’t wait for the day when I can call it – or something quite like it – my own! If you’ve seen something you think might suit me (here’s a quick reminder of the old Jackie look – or check out my a twitter handle, which is slightly more forgiving), please send me a link. When it comes to making a final decision, time is something I have on my side for once.

Of course, what I am not missing is having another appointment in the diary – I have enough of those to keep me busy at the moment. It was back to the hospital today – via a wonderful lunch with an old friend I haven’t seen for about 14/15 years – for the next radiotherapy blast. Highlight of today’s speedy appointment was the moment when the technician said: ‘now, if you’d just like to lie like a big rock or something like that, this would be a lot easier.’ I know I had doughnuts for dessert, but a big rock?! Really?!

As an aside, if there is someone you haven’t contacted for a really long time, why not make September the month you get back in touch. As someone who is now saying thank you to all those who have touched my life over the last three decades, I highly recommend it. Now is the time to say what you mean and tell the people that matter just how valuable they are.

Back at home after blasting number five, there is only one thing I want to do – and that’s get the shampoo out again. Let’s hope all this washing doesn’t wash it off.

There’s one thing for certain, I won’t ever complain about knotted hair again.

Breast cancer lesson 141: Why cancer has inspired me to spend a year baking – rather than buying – bread

On August 22, 2014 By Jackie ScullyIn Baking, Chemotherapy, Happiness2 Comments

It will come as no surprise to those of you who know we well, that my latest blog for Breast Cancer Care (click here to read) is all about food (it was only a matter of time before I moved on to the subject!).

What is more surprising, however, is the fact that when confronted with the long list of side effects associated with chemotherapy treatment, the prospect of losing my tastebuds (and what impact that might have on my life) never really crossed my mind. Focused as I was on neutropenic sepsis, peripheral neuropathy and the more visible side effects of these toxic drugs, I didn’t even spare a thought for the day that a slice of bread might resemble a brillo pad (admittedly I have not dined on a brillo pad, but you get the picture).

Funnily enough, it’s not the day I first turned my nose up at toast (I never did think there would ever be such a day in my life) that sticks with me. It’s the evening I was sat in a little restaurant with a friend and discovered I could once again enjoy the subtle flavours that a good chunk of bread has to offer. Needless to say, there wasn’t even a crumb left in the bread basket and, had I not gobbled up my friend’s share too (with her approval I hasten to add), I would have probably ordered seconds before the starter!

I can trace my fascination with bread all the way back to a little Italian cookery school in central London where I discovered how to make focaccia years ago. Having been slightly under-confident in previous evening classes, the action of kneading bread was such a revelation. I even remember the chef saying I had hands (and the right amount of aggression) for breadmaking. Not sure that was a compliment, but, while I have never made focaccia again, the experience did inspire me to buy a cheap dough scraper and get mixing. I still have my trusty blue dough scraper and I still have a real passion for all things beige and yeasty!

Over the years, I have tried everything from bread bowls (Duncan was eating casserole out of them for weeks on end) and stilton and bacon rolls (tasty with ham on Christmas morning) to bread shots (good party fodder) and olive buns. But, up until about three weeks ago, I had never made a proper loaf. Now, I’ve already made four (along with some crumpets)! I have also just discovered that you should never wash a loaf tin or make a ferment when you have scrubbed down the surfaces (cooking without cleaning up is my idea of heaven)!

With my tastebuds firmly back in my body (and heightened I feel – although this is probably to do with the fact I have been settling for bland for four months now), my love of bread has never been so strong. So much so, that I find even the thought of a seed-filled sliced loaf from the supermarket deeply underwhelming.

That’s why I have decided to spend the next year avoiding the supermarket’s slices and baking my own. Why do I need to buy bread packed with preservatives, when it doesn’t last long enough to go off? Cancer has taught me that I no longer wish to fill my body with pre-packaged foods that favour convenience over taste. My body may not be everyone’s idea of a temple, but it’s my temple. And, temples all deserve nice bread.

With just my peripheral neuropathy-affected hands and my dough scraper for company, I am under no illusions that this will probably be a bit challenging at times (even though I have discovered you can leave a dough to prove on the counter or in the fridge all day before knocking back). But, there really is nothing better than watching a heap of flour, oil and water turn into a freshly baked loaf that is just crying out for a scraping of butter. And, it is that thought that will keep me going if I find myself veering towards the bakery aisle once more.

If you’re tempted, why not join me? Perhaps we could start a virtual bread baking appreciation society! I would also love to hear about any bread triumphs you’ve had – or top tips!

Happy kneading!

Breast cancer lesson 138: The ten things no chemo patient should be without

On August 15, 2014August 18, 2014 By Jackie ScullyIn Chemotherapy2 Comments

When diagnosis day came along and put a spanner in my plans for the new year, I made an extra resolution. And, it’s one I’d like to think I’ve kept. As soon as I walked out of that consulting room (well, maybe a bit later after I’d had a good cry), I decided that if I was going to go through the pain of active treatment, I would use it as a way to help others. From the beginning, I haven’t been in search of pity or sympathy (although I have learned that if you hug for about six seconds first thing it can change the course of a day). I have been in search of tips to brighten my journey – and the journeys of those who face cancer treatment in the future.

I love a good kit list (reminds me of preparing for camp as a child), so it has been a real joy to work on one over the last few months. I have poured over charity booklets (Breast Cancer Care and Macmillan being the most comprehensive), I have quizzed patients wearing lovely hats in hospital waiting rooms, I have Googled until my hands ache for products and solutions to help make life that little bit easier. I am a lot happier for it and I hope, by writing about it here, you (or someone you love) will be a lot happier too.

On the menu bar of my blog, you’ll find a new section called Cancer Kit List (click here to view). I have started with chemo and will be adding surgery as soon as I’ve typed up my notes. Of course, don’t have much radiotherapy wisdom yet, because it needs to happen first!

The emphasis here is on products rather than general tips (I am already working on those for later in the year). It’s personal and is in no way backed by companies or medical advisors. But, it’s my little way of shining a light on what can be a very dark time.

If I were to pick out just 10 things from the list (putting all medicines and prescription mouthwashes to one side) to create the ultimate chemo survivor’s guide, I’d select:

Digital thermometer: This handbag essential will ensure you don’t have to camp out at A&E to find out the difference between a temperature and a hot flush!
Dark nail varnish: Ok, so work colleagues and friends may think you have gone all goth on them (or arty in my case). But, by painting your nails, you can both strengthen them and disguise any discolouration and chemo lines! The choice of colours is endless. You could even use them to match your mood. Who said cancer treatment couldn’t be fun?!
Extra strong mints: These little mints can reach tastebuds you thought were gone forever. I am still finding packets all over the house after stocking up mid chemo!
Smoothie ice lollies: Making ice lollies in a kit from my childhood was fun in a nostalgic sort of way, but eating frozen smoothie lollies was about as exciting for me as ham on Christmas morning (and that is about as exciting as food gets for me)!
A yoga bamboo turban: Whether you’re wedded to your wig or fancy tying complicated knots in your headscarves, I am a firm believer that we all need one easy-to-put-on-and-actually-rather-lovely hat. The yoga bamboo turban (made by Christine headwear) comes in so many colours and is so versatile (sport, relaxing at home, parties, work etc), you’ll wonder how you ever lived without one!
Tissues: Ignore a lack of nose hair at your peril. And eyelashes for that matter. Also doubles up as toilet paper when you’re out and about, which is most useful!
Children’s toothbrush: It’s a fact that children’s toothbrushes are far more exciting and colourful than adult equivalents. They are also, however, soft enough to look after your sensitive gums during chemo. Adult ones feel like you are brushing with a twig covered in spikes!
Ribena: Ok, so you may not be a fan of the red stuff (especially after Epirubicin), but now is the time to discover just what water flavourings you do like! When the tastebuds disappear, water (which is essential for flushing the system) will be anything but appetising.
LIMBO: Try showering without this waterproof arm protector when you’ve got a PICC line in and you’ll soon realise that attempting to keep one arm dry is neither fun nor practical.
Lightweight scarf: With temperature changes, hot flushes and skin sensitivity on chemo, you could be forgiven for thinking you need a suitcase of clothes just to go for a walk. Big summer scarves (and there are some lovely ones out there) will be your jumper, your neck protector, your sunscreen, your windbreak and your style statement. And, they fold up to virtually nothing when you just want the comfort of knowing it’s in your bag if you need it.

Of course, there are many others (hence why I have started the cancer kit list), but these are the ones that continue to raise a smile, even though the chemo days are already starting to fade.

Every day, someone is called into a hospital consulting room and told they have cancer. Every day, someone will face a side effect of treatment for the first time and find a way to cope with it. By sharing tips and advice, it is my hope that every day in a cancer patient’s journey is one they are prepared to face.

Breast cancer lesson 136: Say goodbye to the fake menopause – and hello to a good night’s sleep

On August 12, 2014August 18, 2014 By Jackie ScullyIn Chemotherapy, Fertility, Zoladex2 Comments

Contrary to what my oncologist thinks (although I fear he was trying to lighten things), no woman needs a fake menopause to prepare themselves for the real thing. You may see it as an end to periods as you know them. In truth, the menopause disrupts so much more than that (sleep being top of the list) and, enduring it more than once is not something ever to be encouraged.

That is, unless you want to try and give your ovaries a chance of coming back to life after chemo!

Four weeks ago today, I was waiting patiently in the oncology clinic for my very last Zoladex injection (click here for lesson 124 and a quick reminder). Zoladex (also known as Goserelin) is a hormone therapy sometimes offered to pre-menopausal women throughout chemo to send their ovaries to sleep. The idea is that chemo drugs tend not to attack things that aren’t actually doing anything (similar to the cold cap treatment to reduce the chances of hair loss). While its effectiveness is still yet to be proven, it is widely agreed that while taking the drug may not guarantee you retain your fertility after treatment, it certainly doesn’t do any harm (unless you see four months of sleep deprivation as harmful)!

With no Zoladex appointment scheduled, today marks the start of the waiting game. Up until now, I have not expected a period. Now, I live in hope that my body will return itself to normal and not actually send me into the official menopause (if feels strange to be wanting something like a period. I will probably regret saying that if it comes back with a vengeance). The odds, based on my age, are good. The reality? No one knows and no one dares predict. It’s saving me a fortune in sanitary products, but I would really rather just take the hit.

I haven’t written much about my feelings surrounding the prospect of infertility. I have always been a great believer that things are meant to be. I remain thankful that lots of my friends have been able to conceive and I feel lucky to have so many children in my life (if not under our roof). Whatever happens (even with seven embryos in the freezer), I just feel happy to be here. The future can take care of itself. The way I see it, childless and alive is still a good result! And, if children do feature in our future, I have Zoladex to thank for preparing me well for months of sleep deprivation.

Of course, it’s not just the periods I am willing to return. A night without a yo-yoing temperature is something about which I have been dreaming (when I get the rare chance) for a long time. I understand that Tamoxifen – my soon to be best friend for the next 10 years – is likely to cause at least some of the same symptoms (lucky me!), but given I don’t have to start taking this daily delight until radiotherapy is over, I am hoping for at least a little break (PLEASE!!!!!!). I am now pretty effective on about three hours (my usual pattern is to fall asleep straight away and then wriggle around in a few different outfits from 2am onwards) – but I really wish I didn’t need to be. When a lie-in is once again a treat, you will all know about it. The title of this post may seem a little premature, but I am hoping by expressing it publically, my body might just take the hint!

My fingers are well and truly crossed. Let the waiting game begin!

Breast cancer lesson 134: Get ready to graduate. Chemo is one test you will pass

On August 8, 2014August 18, 2014 By Jackie ScullyIn Chemotherapy4 Comments

August 8 will forever be known as the day I officially finished chemo.

Unlike most other milestones on this cancer journey, this day comes with no medical-related strings attached. No needles, no toxic cocktail being pumped into my veins, no boob job. Just me at the end of a three-week cycle NOT sitting in a chemo chair. That makes it pretty special.

How did I celebrate this momentous occasion you ask? I went to the hospital of course! This time, however, it was for an arm measurement as part of the Lymphoedema clinical trial and the last of my wonderful aromatherapy treatments courtesy of Dimbleby Cancer Care. I baked some flapjack because I was visiting the Cancer Day Unit for my massage. But, that is where the similarities end.

As the end of a three-week cycle, you could be forgiven for thinking that I might now be symptom free. Sadly, the cumulative effect of chemo means that bits are still falling off – and may continue to do so for quite some time. It feels a little cruel that at the time you’re recovering, you can actually start to look a little worse. But then, I don’t think chemo likes playing by the rules – hence the fact we all have a different experience going through it.

With a break in the cycles at last, I thought it would be fitting to take stock and look at the aftermath. Basically, what’s left and what’s a little bit wonky. Here’s the damage (so far):

Head: arguably still bald, but now sprouting what I call ‘chicken fluff’. It’s soft like baby hair (another reason why I liken chemo to being reborn). Not sure on the colour yet, but I’m hoping it isn’t grey. These pictures hopefully give you a glimpse of the fluff – although I do appreciate the lighting makes me look a little like an alien!
Eyebrows and eyelashes: clinging on for dear life still, but fading fast I fear. People do say the eyebrows are the last to go and it looks like that may be the case. I do feel lucky though because the combination of lighter hair and glasses does make it hard to tell if they are there or not. I am sad I can’t wear mascara (my one or two lashes would look a little weird if I highlighted them)!
Other hair: why is it that the leg hair is the first to reappear? As if anyone wants that back! I have heard that if you wax it early on, it may forget to grow back. If you can vouch for this do let me know before I rush off to get them waxed! The arm hair, on the other hand, is now falling off (having thinned throughout). Everything else is still pretty much absent (oh, nose hair, my runny nose misses you). I am watching my big toes carefully as I have heard they can become a bit Frodo-like in the post-chemo days.
Nails: Sore nails are really not pleasant. If you tap them on a hard surface (I did this once and now try to avoid at all costs) if feels as if they are coming off. They remain painted in blue and pink, but the last time I reapplied the colour, there was a lot of discolouration and my big toes were black. Thank you nail varnish is all I can say. At least this is something that can be masked.
Hands and feet: I have separated this out from nails because the key side effect I have been left to enjoy is peripheral neuropathy. This means I get a tingling in my hands and feet and the numbness/reduced sensation in both is very odd indeed. I can live with it, but I really hope I don’t have to.
Weight: A 2kg increase over seven months is a result in my book. Now just got to get rid of the steroid hamster cheeks and lovingly protect my flat-but-bulging-a-bit stomach.
Tastebuds: back in the game and currently devouring some homemade bread. Bread has such a subtle flavour, it really isn’t worth eating when the tastebuds disappear. I am certainly making up for it now (although ever mindful of the point before).
Mouth: ulcer free and no white tongue. Whoop!
Liver: survived! Thank you liver. I need you.
Hot flushes: controlled slightly by the Clonidine (I can increase the dosage, but am not at the moment), but still a pain at night. I do love the sunshine and the summer, but think the autumn weather may help.
Skin: silky smooth and slightly tanned (for the first time in about a decade). It does feel as if I have been regenerated. Still on the factor 50 and think I may be for the rest of my days.
Fatigue: I am not sure whether this is due to the drugs or the general lack of sleep caused by the Zoladex.
Brain: in tact, just. I have been known to put the plates in the fridge (along with the cereal). But, I think I may have done that in the pre-chemo days, so I don’t really have any excuses.
Positivity level: still smiling!

Everything else is still in tact (or yet to be investigated)! I certainly won’t be scratching the surface to find out.

Am I happy to have survived four months of toxic drugs without being hopsitalised and spending even one day in bed. Absolutely! Would I go through it again? Not this month – and hopefully never again! I was reading only the other day that scientists are predicting that chemo will be obsolete within 20 years (due to a project looking at the genes responsible for cancer). To think that people may one day be cured without these drugs is a wonderful thought.

When things stop falling off me, I will be uploading my cancer kit list (along with my top tips and reflections on chemo) to help all those facing sessions in the chemo chair. One thing I will say now though is that chemotherapy doesn’t come with a textbook. If it did, we’d all be reading it. There are things we can all do to prepare, but it is far better to wake up each day and meet each challenge head on than worry about the challenges you may never have to face. Easier said than done, but it can be done!

There’s no mortarboard, gown and certificate waiting for this graduate – just the satisfaction of knowing I am out the other side (and I have good skin)!

I got there – and so will you.

Breast cancer lesson 131: Why some risks are worth taking

On August 4, 2014August 18, 2014 By Jackie ScullyIn Chemotherapy2 Comments

Oncologists and travel insurance companies have one thing in common. Neither seems to go out of their way to promote the idea of holidaying while on chemo. While my oncologist does take a rather relaxed view of getting out and about (he believes that infection is more to do with the bacteria you’ve already got in your body rather than what you’re exposed to), I am not sure even he would advocate packing my immunity boosting injections in a cool bag and setting off into the sunset in search of something I can actually taste. So, that’s why I didn’t ask him.

Now, before you think me reckless, I can assure you I informed my oncology nurse (haven’t seen my actual oncologist since April), researched all nearby hospitals, took down emergency telephone numbers and packed a whole bag of pills and creams to see me through (even without shampoos and hair products, you don’t travel light on chemo). I didn’t need a passport and the closest to extreme sports I got was walking up a steep cliff on the coast path. As far as risks go, escaping the big smoke for a breath of restorative fresh air and a few cliff top walks is a risk worth taking.

In many ways, it was the perfect holiday. We walked, we talked, we ate lovely food (some of which I could taste), we cycled the Camel Trail, we played pool, we relaxed and we even enjoyed the sunshine (as a childless couple, holidaying in July and August hasn’t happened since university)! As you saw from lesson 130, I managed to tick off number 17 on my Brighter Life list (click here for a recap).

From a chemo perspective, I broke a few rules. I ate out in places I didn’t know. I ate shellfish and soft cheese. I gobbled up runny eggs. I may have slightly over-exerted myself on the Camel Trail. I carried a few too many heavy bags (less chemo more Lymphoedema risk). And, I went out in the sunshine. But, barring one spiked temperature that went down as quickly as it went up, I have returned relaxed, refreshed and a little sunkissed (factor 50 does allow a slight glow) and ready for my radiotherapy planning appointment and tattoos later this week.

When it comes to holidays, I have always had a bit of a bad habit. For the first few days, I relax and revel in the fact we have a week away together. Then, as the halfway point comes, I suddenly become focused on time slipping away and the prospect of returning home. It always feels like everything speeds up as we race to enjoy what’s left of our break.

This time, however, I broke the habit. I am happy to say, I enjoyed every moment and every mouthful of food (the bits I could taste anyway). I enjoyed the life I’ve been given, rather than wishing it away.

If I could sum up our holiday in a moment, it would have to be our walk to Rocky Valley, just north of Tintagel. Rocky Valley is small gorge-like valley close to the sea that is only accessible on foot. I heard about it on the BBC show Secret Britain back in 2011 (a man talked about it being the perfect location for his marriage proposal) and had been determined to visit it (back then in the hope the romance of the place would rub off on Duncan). Sadly, Duncan hurt his knee and couldn’t complete the walk in 2011 and, when we returned to the area in 2013, heavy rain stopped play! This time, however, we made it – navigating many steep paths in the process. I remember standing on the path explaining my 2011 proposal plot to Duncan (there was a lot of laughing) and thinking how lucky I am, not just to be alive, but to not have to think every romantic spot is a possible proposal destination (after 13 years, it was pretty exhausting). I also remember thinking that we nearly didn’t make the journey, content as we were with relaxing in and walking around Polzeath. It wasn’t planned (like most of my holiday adventures). But, we made the effort, made the most of our time there and ticked off something that should have been on my Brighter Life list. Reaching the little National Trust sign made me happier than I can describe.

Of course, I am not advocating that we all pack our bags and travel miles from a hospital. But, taking a step away from London life, with its hospital appointments and daily cancer reminders, was really invigorating and helped me reflect on the last six months. For those of you contemplating a mini getaway on chemo, here are a few of my top tips:

Don’t forget your thermometer: You may get to leave the hairbrush at home, but a digital thermometer is a must. The battery on mine decided to play up just as I was spiking a temperature, but I am so glad I had it for peace of mind.
No scrimping on the sun tan lotion: Sun sensitivity is a big deal on chemo, so it’s important to cover up where possible and slap on the lotion. Always one to burn just looking at the sun, I was thorough in my application and am glad to have achieved a slightly healthy glow.
Set reminders for those pills: When life doesn’t follow its usual routine, it is easy to forget things like injections and pills. I packed everything from savlon to co-codamol for back-up, but set phone alarm reminders for my clonidine, injections and fluconazole. It worked a treat.
Know your options: I am a great believer that if you prepare for the worst, the worst won’t happen. That’s why I researched all hospitals in Devon and Cornwall and kept a list with me of essential numbers and addresses (along with the quickest route to a few key ones). Combined with my oncology card I knew I had all bases nicely covered, should the words Neutropenic Septicemia rear their head.
Give tap water a boost: I always order tap water in restaurants, but was slightly worried I wouldn’t be able to taste it properly and have to turn to sugary soft drinks (which get boring very quickly). Enter the humble lemon. This zesty treat transformed my tap water, making it taste lovely even with chemo mouth.
Work the menu: Eating out is a big part of a holiday for me. Determined as I was to enjoy it even with questionable taste buds, I opted for meals that included anything from lemon and capers to beetroot and white wine vinegar (the more acidic the better). Work out what works for your muted taste buds and then work it in to your menu choices. I nearly kissed the waitress on Wednesday when she gave me a free sample of white wine to see if I could taste it (it is always worth asking to see if they will oblige). It was beautiful, so we ordered a bottle!
Pack those snacks: There’s nothing like an extra strong mint or a jelly baby to help give your taste buds a lift. I also packed some spices so I could add some kick to our breakfasts and requested ice lollies for medicinal purposes (fruit pastilles lollies are quite exciting, I must confess)!
Take a break: Tempting as it is to pack the itinerary with day trips and adventures, it is important to pace yourself. After a few days of cliff walking, me and my bald head were in need of a quiet day or two. Rest and relaxation overlooking the sea is certainly much nicer and sitting in the shade in the living room at home!
Try something new: Whether it’s a walk to a previously undiscovered (by me at least) section of coast path, a ride on a steam train through the countryside or an activity you’ve been desperate to try, I would encourage you to seize the day. Enjoy every moment (as long as you don’t forget tip number 7 in the process)!
Make it memorable: We none of us know how many holidays we have left, and we are the only ones who can make each one a holiday worth remembering.

With a little bit of planning, a trip away needn’t be as risky as you think.

If you’re heading off soon, happy holidays! And, if you’re not, maybe it’s time to start work on a Brighter Life list of your own to encourage you to take the next step.

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	Susan on Breast cancer lesson 166: Why…
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Small boobs, big smiles

Category: Chemotherapy