Tag: blogging about cancer

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

On 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.

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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:

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And this is the ultimate aim:

AFI FEST 2011 Presented By Audi - "My Week With Marilyn" Special Screening - Red Carpet

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.

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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 175: You don’t need a nipple to feel whole again after cancer surgery

On By Jackie ScullyIn Breast reconstruction surgery, Moving forward, Reflections on cancer2 Comments

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A few days ago, I called the hospital and took myself off the waiting list for nipple reconstruction surgery.

It wasn’t a rash decision (many a cup of tea has been needed in the build up), but as far as decisions go, it is among the best I have ever made.

I must confess that while I would have loved to have said to colleagues and clients: ‘Sorry, I won’t be able to make the meeting as I am having my nipple put on that day’, and, while part of me liked the idea of being put back together again, a huge part of me was shouting: ‘Why?’

After surgery and finishing active treatment, it felt like the natural next step (why wouldn’t I go for a cherry on top’?!). Sitting in front of the surgeon talking about cutting and snipping and stitching back in October, it seemed like a quick and painless procedure and an easy way to forget the past.

But, ask me what I am thinking about six months on and I can tell you, it’s not a pink, fleshy (albeit realistic) blob on the end of my fat-filled right boob. It’s the fact that I am happier, healthier and fitter than ever and a nipple really won’t add anything – except a ‘permanent outy’ that no amount of warm weather would conceal.

Now, I realise that I was more curious than in need of an extra asset. And, curiosity just isn’t a big enough reason to brave a hospital gown, needles, a knife, an operating table, a series of nipple tattoos and the memory of a year in the warm, but treatment-focused arms of the amazing NHS.

I guess you might call me lucky. Strange as it sounds, I don’t want to hide from my scars. Each one carries with it a story that makes me who I am. Each one reminds me not to worry when I get caught up in the complications that come with everyday life. Each one keeps me grounded. Each one is a reminder of all I had to lose and all I have gained as a result of this challenging – and yet weirdly fulfilling – period of my life. My scars are just as much a part of me as my right foot that turns in and my dodgy hip. I am not looking to replace them, but embrace them. I have no ambition to be a topless model so why would I cover up what is always covered up.

I read my story in the lines that cancer has given me and I smile. I smile because they remind me not of pain and surgery, but of just how far I have come – and of just how far I want to go. It is with these scars that I will be lining up on the starting line of the Bath Half in two weeks (and the Pink Ribbonwalk in July and the Royal Parks Half in October). It is with these scars that I will be flying to the Caribbean (yes, leaving Europe for the first time) with my new size 6 tankini (sun-exposure conscious as ever). And, it is with these scars that I hope to make a difference on this wonderful planet of ours. As I said, all the way back in lesson 21: ‘scars remind you where you’ve been and how hard you worked to get there. They don’t have to dictate where you’re going, but they can give you the strength and determination to make sure the path you do choose is a beautiful, interesting and inspiring one.’

Last year, I came face-to-face with my own mortality at the age of 32. I had the chance, at a young age, to reflect on what my gravestone could say and I decided the message needed to change – and fast. I can guarantee it won’t ever say: ‘Here lies Jackie, cracking right nipple.’ What I hope it will say (and not for a very long time) is: ‘Here lies a woman who smiled, laughed, lived and loved – and dedicated her life to helping others do the same (admittedly may need editing as I am not in the market for a tomb)! Sounds morbid, but I have plenty of years to get it right.

Breast cancer lesson 173: Good things come to those who wait

On By Jackie ScullyIn Moving forward, Reflections on cancer4 Comments

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While a trip back to oncology in the first week of January was never going to make the 2015 highlights list, I am delighted to report that, as appointments go, it was actually rather nice.

For starters, when a doctor says the words: ‘well done’, ‘congratulations’ and ‘now go away and forget about us’ in the space of a four-minute conversation (that was actually stretched out because I had waited 1.5 hours to be seen), you know things are going to be just fine.

It was a strange experience walking back down the street to the hospital, passing the chairs where I waited anxiously on more than one occasion and sitting in the waiting room smiling conspiratorially at bald patients. I have to say, if you’ve got short hair (or in fact any hair), an oncology department is the place to go to feel hairy!

With such a glowing report, you’d think there wouldn’t be a test attached but, this being a research hospital, you can’t move across the waiting room without someone waving a consent form and asking you to sign away relevant bits of your body.

This time, I was asked whether I would participant in a genetics research project for 300 women with lobular cancer. Apparently, given lobular cancer (click here for more information) is less common than ductal, they are exploring whether or not there is a genetic reason why people are diagnosed. Sadly, my individual results will not be shared with me (and I didn’t qualify for genetics testing because the cancer in my family is, thankfully, too far away for concern), but I hope that the research study, when it’s completed, will help many more people in the future. Things are easier to fix (or prevent) when we understand them.

Of course, for me to be a useful participant, I needed to provide one thing = blood. A year ago (blood donor that I was), I would have thought nothing of this and dutifully presented my arm. Trouble is, with good blood-giving arm permanently banned due to it being a lymphoedema risk, giving blood is no longer the breeze it once was. I signed the consent form willingly, but then I added: ‘Trouble is, you may not be able to get any blood to test.’

Undeterred, the nurse approached my arm and proceeded to prod, press, warm, wiggle, rub and tap it. Anyone familiar with my fertility preservation blogging days will know that no amount of coaxing brings these veins to the surface (eight failed attempts is my record). After a few attempts (given it is elective rather than compulsory she refused to continue) she sent me packing with the promise of a rematch – and hand-pumping exercises to do while watching the TV to strengthen my veins so that I play ball in future. I am not sure any amount of pumping will make my arm needle-friendly (especially as it wasn’t ruined by chemo, but always a bit rubbish, but I would very much like to contribute to the research, so I better give it a go.

I can’t quite say I’m discharged (that revolving oncology door will always be open to me), but with no follow-up form and the suggestion that I go and erase the word oncology from my mind, I’m as good as free (to see the breast surgeon annually – so not quite as free as I’d like).

Next up, the end of treatment clinic, a mammogram and a new nipple. Then I might just take a holiday!

Happy new year one and all. May it not involve too many more waiting rooms!

Next up, the end of treatment clinic, a mammogram and a new nipple. Then I might just take a holiday!

Happy new year one and all. May it not involve too many more waiting rooms!

Breast cancer lesson 169: Why getting organised helps me get closure

On By Jackie ScullyIn Moving forward, Reflections on cancer2 Comments

This weekend has been dedicated to the cancer-equivalent of a spring clean. I have cleansed my cupboards and drawers of sleep caps, hairloss hats, information leaflets, running medals and PICC line covers and I have, at last, sealed the cancer capsule I wrote about in lesson 158.

It was long overdue, but it was as liberating and therapeutic as it sounds.

Getting closure is the subject of my latest blog for Breast Cancer Care (which will be uploaded to their site soon, but here is a link to the others if you’re interested). And, sealing that Cancer capsule is a big part of it.

For those of you wondering what I mean by a Cancer capsule, it’s this. Over the last eleven months I have accumulated a lot of cancer-related ‘stuff’. Of course, the natural thing would be to donate everything to charity so that others can benefit. But, the trouble is, the last thing I gave to charity was a lightweight dressing gown I wore in hospital when I had hip surgery in 2007. I hadn’t really worn it since so, on January 1 2014 it left the house – just a few weeks before I had to buy another one! I am a little superstitious, so giving the things away that kept me going sadly isn’t part of the post-treatment plan.

So, that’s why I decided to create a cancer capsule – a box I can fill with hats and sleep caps and PICC line covers and tuck away in my house as a little insurance policy. It started life as a shoe box and is now a giant pink plastic box (with a lid) packed with everything from my boob cushion and plastic shower sleeve to the running vest I wore when I completed my first ever 10k in July this year.

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Yes, it is practical (I would never want to rebuy these items if it ever came back), but by filling it with every single card, note, letter, good wish, running medal and fact sheet I have received this year, it’s a box that says: ‘I can do this’, if I ever have to ‘do this’ again. This box is my story. With the words ‘be brave, be bold, be you’ stuck on the lid, I know that if, one day, I have to open it again with tears in my eyes, I will be reminded of both the support I had and the strength I found. This box has everything I need should I have to smile through dark times once more.

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Of course, cancer-related organising does go further than packing old items away. This little pill pot organiser is my new best friend, making sure I take my Clonidine and Tamoxifen every day without fail – and making sure I don’t accidentally overdose in the process. It’s more colourful than the clinical packaging and, thanks to a card packed with Boots Advantage points, it didn’t cost a thing.

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Today I declare myself free of cancer clutter!

With the wig burning and the capsule tucked away out of sight, I know I am getting closer to that wonderful thing called closure. I’m not there yet, but I know one day I will be.

My cancer capsule is packed away – and so too, for now, are my memories.

 

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

On By Jackie ScullyIn Moving forward, Reflections on cancer7 Comments

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

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

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

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

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

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

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

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

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

Wish me luck!

Breast cancer lesson 163: The rollercoaster of life continues even when you’re back on solid ground

On By Jackie ScullyIn Moving forward, Reflections on cancer3 Comments

Yesterday, I went on a ‘getting closure’ mission. Those of you who have followed my journey from the beginning may remember a certain moment of criminal activity that I will never allow myself to forget. Just after being diagnosed, I walked out of a coffee shop without paying. Yes, it was only a cup of tea (and when my friend called them to apologise they said the loss was only about 15p). But, for me, it was a sign the cancer diagnosis was starting to take hold.

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So yesterday, I went back to said coffee shop (hoping not to find my mug shot plastered in the window) to repay my debt and have lunch. The only hitch? The coffee shop looked like it was no longer in business. All I wanted was closure, but life decided I couldn’t have it (if you know what has happened to the Dandelion Cafe in Camden, please shout).

After joking about my behaviour sending the business under, I started to reflect on just how difficult this healing period really is. I feel strong. I feel happy. I feel motivated, and on the surface (if we ignore the odd hair-do), I look better than I have done in years. I am positive about the future and not currently fearful of what that future may contain. But, even with all the smiles and the genuine happiness, I am still acutely aware of the fact my cancer diagnosis is still bubbling beneath the surface. And, even when I take positive steps to try and put this chapter behind me, life find a way of mixing things up and reminding me that I am not in total control of what comes next.

A lot of people tackling ‘the end’ have found the writings of Dr Peter Harvey, a clinical psychologist, incredibly useful and I can see why. What I particularly like is the rollercoaster analogy he uses to describe the whole experience.

Rather than paraphrase, here is a passage from his paper:

Imagine a rollercoaster. Some of you will find this an exciting and thrilling image: others of you will find it terrifying and beyond belief that anyone in their right mind would willingly subject themselves to the torment of being transported at high speed and with great discomfort in this manner. Some people find this a helpful image to represent the process of the diagnosis and treatment of cancer.

On a rollercoaster, you are strapped in and sent of into the terror, knowing that there is nothing you can do about it until you emerge, wobbly and battered at the other end. You manage by getting you head down and dealing with it as best you can at the time. It is only afterwards, when you are back on solid ground again, that you can look back with amazement and view what you have experienced and marvel at your courage.

This seems to be an analogy for what happens after diagnosis of, and during treatment for, cancer. The end of the ride is equivalent to the end of treatment. And this is where we start after the treatment has finished and at the point where you can begin, bit-by-bit, to deal with all that you have been through and all that is to come.

You may have had to endure months of treatment by knife, chemicals or radiation until you are probably sick of the whole business, both literally and metaphorically. Now is the time to heal, both body and mind.
A lot of what he says rings true. For me, the most striking bit of the analogy is the idea that when you are going through treatment everything is almost a blur as you rush from one waiting room to another, obediently taking your top off or holding your arm out for treatment. It is only when you hit solid ground again that you can start to reflect on the ride – thrilling, frightening or otherwise. I can safely say, I think it’s a rollercoaster we’d never like to see – let alone ride – again!

Positive though I am, I feel there are two things right now that have changed for me. The first is my view of time. I have always been a tad bit impatient. Now, however, I feel that every moment I have is a gift and, therefore, have been trying to seize each and every one. Trouble is, now that I am back working full time as well as volunteering, cooking, baking, exercising and trying to relax, there really aren’t enough hours in the day. I listen to conversations wishing I could get up and move on. You could say it’s a great filter. The truth? It’s actually a bit exhausting and it’s just unsustainable. Hopefully I will find a happy medium soon.

The other change is a style one. Over the last six months, I have been reaching for zip-up tops and jeans, not dresses and skirts. I was excited about stepping back into my work wear, but, it seems my body shape isn’t the same anymore. The clothes fit, but they don’t quite look right, I have changed, my body has been reborn, and my clothes are a mark of my ‘past’ life.

This version of normal is so shiny and new, it going to take me a while to adjust. At least it is closer to normal though. And, every day, I am taking one step further away from cancer and one step closer to me. Today, I towel-dried my hair, upgraded to an adult toothbrush once more and used a razor (my legs got a shock). That’s what I call progress!

At least I know one thing that won’t be making am appearance any time soon – a rollercoaster!

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you for everything. You know who you are!

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

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

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

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

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

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

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

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

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

Here’s the photographic evidence:

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Breast cancer lesson 153: The race to the finish is on!

On By Jackie ScullyIn Happiness, Reflections on cancer3 Comments

It really is hard to explain quite how excited I am right now. You might think this strange given it is the evening before my next 10k (that means an early night and no Saturday wine), my skin is starting to look very angry and I have just discovered that the loss of sensation and general tingling feeling in my hands and feet (otherwise known as peripheral neuropathy) might be here to stay for a good six months if yesterday’s review meeting is anything to go by. But, just knowing that I have two massive finish lines to cross over the next two days makes me very happy indeed.

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I confess, I had a slight blip yesterday at my review meeting. After joking with the team doing the treatment for the day, I was ushered into a room to talk through aftercare following my last blast. It started well due to the fact I was dressed in a complicated top that took me ages to get off while I was trying to hold a sensible conversation. (I just had to laugh in the end as the surreptitious tugging on the sleeves to try and get them over my hands just didn’t work.) Once out of my top, we talked creams (you need to keep the Doublebase going for as long as you have symptoms and for at least two weeks), swimming (seems I might be able to take my first swim in a month if the skin holds), peripheral neuropathy (it seems I still have no one to talk to about this currently and it might be here to stay), Tamoxifen (as I haven’t been consented for this yet, no one in the department can prescribe the drug for me, so I have a few weeks reprieve before the 10-year course begins) and the 10k (she has given me some medical cling film to attach to my boob and under my arm to prevent the friction from causing my skin to fall off).

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Then, she mentioned the future. For the first time, a medical professional was sat in front of me telling me this was the end. There would be no more frequent appointments to make me feel like I am fighting any rogue cancer gremlins in my body. There will be no one close by if I have a ‘what if’ wobble. From Monday, I will be just another hospital number on the system, already replaced with another patient starting their journey. I should have been jumping for joy. Instead, when someone is looking across at you with tears in their eyes telling you it’s ok to cry, I felt a little sad. It wasn’t a lasting sadness (I welled up a bit but recovered well), just a realisation that the protective bubble of surgeons, nurses and doctors is about to burst. And, it won’t be long before I will be left alone to face the future, with just a packet of pills for company.

The thing is, I know I’m ready for the future. I am excited about the future. I am strong enough to face the future. And, I know I will never be alone, thanks to the sheer volume of amazing people around me. I am also delighted to be giving waiting rooms a wide berth for a few weeks at least. I guess I just wish this appointment had been less about uncertainty and sadness and more about congratulating me on a job well done. I would have preferred an ‘I did it’ sticker, a pat on the back and a big smile rather than a reminder that the end is not really the end and that the road ahead could actually turn out to be a little bumpy.

The way I am choosing to say goodbye to active treatment and hello to a cancer-free life, however, doesn’t require a consulting room. Firstly, given there won’t be fireworks or even a lolly or star sticker from the hospital (and it is a Monday as well, which makes it feel even less special), I have taken it upon myself to mark the occasion with an end-of-active-treatment present to self. I have heard of people buying shoes, bags and cars to celebrate the fact they are being allowed to get off the cancer conveyor belt, but I have opted for something practical and meaningful to me: a decent pair of trainers.

I am not sure my old pair should have really been taken round the block, let alone the streets of London in July. So, I promised myself, if I made it across that finish line, I would get a pair that wouldn’t break my feet. I bought them a month or so ago to break them in before the big race tomorrow and I do feel I have been bouncing rather than jogging around the park of late. When I put them on, I feel like I am giving my feet a big hug – and that’s got to be a good thing.

The buying of running shoes is also quite significant for me. Running deserves its very own chapter in my cancer story. Anyone who has ever taken to the road (park, trail, path etc) will know that indescribable rush that comes with completing a run/jog/walk. It is that feeling that has helped me greet each day with a smile. And, it is that feeling I want to carry with me forever. I believe a run can change a day for the better. And, my future is all about having a better life. I never thought my hips and the toxic drugs in my body would ever let me be a runner. I am so grateful to my body for giving me that chance.

These shoes are also a reminder that whatever finish line it is you need to cross, you will get there. But, you should focus on making the journey as comfortable as possible, so you enjoy every step of the way.

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Tomorrow, the aim is to 1) finish in one piece with cling film in tact and skin and nails still on 2) Raise money for the amazing charity Coppafeel 3) celebrate the end of cancer and the beginning of a healthier life with friends 4) shave even one second off the chemo run time and 5) cross the finish line with a big smile on my face. If you’d still like to pledge to buy me a drink to celebrate the end of active treatment (for each pledge I get I will donate to charity) or sponsor me, please post here!

When I cross that finish line tomorrow I cross it for everyone who has joined me on this journey. This serious illness may have tested me to the limit, but I think I will always look back on this time as one incredible ride.

All I need now is an early night and then a bit of banana fuel in the morning!

Wherever you are in the world, I hope you’ll be cheering us (by which I mean, Duncan, Fran and Sam) on!

As an aside, I will leave you with a rather amusing exchange with the shop assistant at the local supermarket a moment ago (on my mission for bananas). It went a bit like this:

Assistant: ‘How are you doing?’

Me: ‘Really well thanks’

Assistant: ‘And, how is your day going?

Me: ‘I am having a good day. Thanks for asking’

Assistant: ‘Really?’

Me: ‘Really!’

Assistant: ‘But, you do have a disease right?’ [points to lack of hair]

Me: ‘Ah yes, that would be cancer treatment. Nearly over now.’

Assistant: ‘I knew it! You’re a star.’

Seems I can’t even buy my magic running-fuel bananas in peace!

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

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

bread

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In truth, nothing will ever taste the same again.

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