Archive for the ‘The Big C’ Category

It’s that time of year again. A month which used to pass me by, but which I now dread is upon us – October or Pinktober is BREAST CANCER AWARENESS MONTH.

For those of you who aren’t yet ‘aware’, the pink-ribbon is the international symbol of breast cancer awareness and Pinktober is Breast Cancer Awareness Month.

During Pinktober people interpret and express their awareness in many different ways. You can light up a global landmark in pink fairy lights, as that icon of bustiness Liz Hurley does every year (for Estee Lauder); you can get your knockers out to promote ‘awareness’ as many celebrities like to do; you can wipe your backside on pink-ribbon toilet paper; you can drag out the obligitary pink feather boa for ‘Wear it  Pink’; or you can simply express your awareness by taking part in whatever this year’s ‘Breast Cancer Awareness’ Facebook game happens to be.

This is not awareness

This is not awareness

Pinktober generates mixed feelings among the Breast Cancer community. Whilst it has been a spectacular success in celebrating survival and raising money, there is still very little discussion around cause and prevention, and for those living with secondary or metastatic disease (the one that kills you), it’s definitely not a cause for celebration.

big-pink-find-out-3

Neither is this

For many, the saccharine sweet, surgically enhanced message conveyed by the media is completely at odds with the harsh reality of the disease. And thanks to the pink feather-boa effect, Breast Cancer is now perceived as CANCER-LITE. It’s no longer viewed as a life threatening disease, despite the fact that IT KILLS 12,000 WOMEN IN THE UK EVERY YEAR.

Neither is this

A strategically placed pink ribbon does not = awareness

The media is saturated with stories of hope and survivorship: no one wants to be reminded of the fact there that THERE IS STILL NO CURE FOR BREAST CANCER or of the people who’s lives are devastated and cut short by the disease.

This is my third October as a breast cancer patient and I’ve had enough. Instead of sitting here in a rose-tinted-rage, I want to set the record straight and share some of the wisdom I’ve acquired since my diagnosis. I’ll be bugging the hell out of you for the whole month of stuff about awareness. It won’t be pretty and it definitely won’t be pink, but if I can persuade you to read at least some of my posts, maybe you will learn something more about this disease.

Please say hello and welcome to Eli!

Breast Cancer Focus Group Logo AW

 

Eli the elephant is the new logo for the Secondary Breast Cancer focus group at The Christie hospital in Manchester, a group which I’m proud to be part of.

The Pledge

The Secondary Breast Cancer focus group at The Christie was formed following the launch of the Secondary Breast Cancer pledge in March 2014, a national initiative aimed at improving standards of care for people diagnosed with secondary breast cancer.

I’m lucky enough to get treated at a hospital where I have access to a clinical nurse specialist (or Breast Care Nurse), along with many other support services. However for many living with Secondary Breast Cancer, this isn’t the case.

Many patients don’t have access to a clinical nurse specialist or are living with unnecessary pain because they haven’t been referred for palliative care. The Pledge aims to ensure that all patients with secondary breast cancer get the highest possible standards of care.

The focus group

When I joined the focus group earlier this year, they were working on a project with Breast Cancer Care, to update information contained in secondary breast cancer resource packs. Ideas and feedback generated by the group, are now being put into practice, and will be incorporated into the resource packs given to patients at diagnosis.

More recently the SBC team at The Christie received funding from Macmillan and Manchester Cancer to hold a series of  “Living with Secondary Breast Cancer” events at The Christie.  At the first “Living with Secondary Breast Cancer” day in July, more than 50 patients and carers attended, with talks from various cancer specialists, along with workshops for both patients and carers.

 

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Secondary cancer can be a lonely and isolating experience for patients and events like this are a lifeline. For as well as allowing patients to gain knowledge and access local support, it enables them to meet others living with the disease.

The next event is taking place on Wednesday the 21st of October and is open to all secondary breast cancer patients at The Christie Hospital in Manchester. If you, or anyone you know, are affected by secondary breast cancer, then please come along. Patients are welcome to bring partners, friends or relatives. For more information or to book a place, please contact:

claire.gaskell@christie.nhs.co.uk or call 0161 446 3996

 

 

The past few weeks have been really crazy. As well as moving out of two houses, moving into another, getting my Salford house fixed up for rental and getting myself ready to go back to work, I managed to squeeze in some reconstructive surgery. The surgery was all last-minute and two weeks after moving back to Manchester, I found myself back at my parents, recuperating.

I also had my first Cancerversary on the 1st of June, my AD 1, so it’s been a strange time of transition and recollection. I had to pinch myself to check I was all still there when I woke up last Saturday.

Being back in Manchester was weird. It’s not like I haven’t visited, but since moving back, everything feels completely different. It’s as if somebody hit the pause button on Manchester world. Now I’m back on the carousel, everything is moving in fast forward, and I could quite happily jump off again.

A postcard from Manchester

A postcard from Manchester

The operation last Monday gave me some respite and allowed me to delay my inevitable return to life. My version of normal has been severely warped over the past year. I’ve been living in a completely different world, one of hospitals and support groups. I’ve faced my mortality at an age when most still consider themselves immortal. It feels like I’m waking from the dead.

So here I am again, all taped up, a little bruised and swollen but another step closer to normal. Post-cancer, I’m so blasé about any kind of medical intervention that I wasn’t the slightest bit phased by the prospect of more surgery. I have absolute faith in the plastics team at Ninewells, and before the operation my main concern was placing my order for post-op coffee and toast. Hospital toast always tastes so good. Why is that?

The operation I had last Monday is called a Mastopexy: Greek for “up-lifting of droopy breasts”. This doesn’t require any explanation however I’ve had some tweaks and adjustments on my healthy breast to balance things out. People asked if I wanted to go up a few sizes, but this was never an option, besides, I’m neither blonde nor dumb enough to want double GG’s.

It’s now 10 days post-surgery, and today I returned to hospital to get the dressings removed. I was anxious about seeing my breast, as all I’ve seen for the past week is a bruised, swollen mass, however I am really pleased with the result. As with my reconstructive surgery the only scarring is around the nipple, so it’s a very neat job. It feels good being symmetrical again and I’m proudly sporting a much younger, perter looking pair than I had before.

mine aren't mystic

Mine aren’t mystic, just symmetrical

I’m trying to be really positive about the breast reconstruction saga, as my body has been mutilated in so many ways over the last year. In a previous life I tried internet dating, and I wonder what my profile header would read today: ‘Breast cancer survivor seeks short-sighted man. Must like scars’.

In ‘more cancer news’, there have been some interesting developments in both mine and my mother’s treatment for cancer. Mum has recalled that some of her aunties may have had breast or ovarian cancer, suggesting a familial history, so our oncologist has recommended we go for genetic screening. It does have implications for future treatment, however at this stage I’m not worried, just curious to find out more.

The chances of mum and I having a hereditary link like Angelina Jolie are very slim, as only 5% of breast cancers are caused by genetic mutations. If we do, there’s a possibility we will be offered preventative treatment. I’m all for prophylactic surgery and Angelina has done much to raise the profile of hereditary breast cancers, however I think there should be more focus on preventing the 95% of cancers that aren’t caused by genetic mutations, as research shows that a large proportion of these are preventable.

There are many things I could have done to reduce my risk. I could have reproduced when I was younger & more fertile; I could have breast-fed those babies for 12 months; I could have used a non-hormone based contraception; I could have reduced my alcohol consumption and I could have made my life a bit less stressful. These are all factors which can alter hormone levels in your body, huge risk factors in a cancer like mine which was both Oestrogen+ and Progesterone+, risks I only became aware of after my diagnosis. This angers me, as I think many young women are unaware of the long-term consequences of lifestyle choices such as delaying parenthood. It’s no coincidence that the rise in breast cancer in women under 40 is rising steadily with the average age for childbirth.

Hindsight is a wonderful thing and I’ll never know exactly what caused my cancer, however there’s no point in blaming yourself. How many of you were ready to have children before you were 20? How many of you considered your mortality when you were out enjoying yourself at 21? How many of you actually read the ‘Risks & Contraindications’ blurb on your contraceptive pill packet?

So what can you do to minimise the risks? Keeping fit and maintaining a healthy weight are the main ones and this was my primary goal throughout treatment. Diet is really important and many anti-cancer diets promote a plant-based, sugar-free, dairy-free diet. Breast-cancer-prevention-diets suggest consuming lots of green tea, broccoli, mushrooms (shiitake, maitake, reishi) and as much turmeric as you can stomach in one day. Vitamin D is really important too, as studies in the US show that the incidence of breast is much lower in the sunshine states. Alcohol is a huge risk factor and research shows that the risks increase exponentially with consumption. As little as 1.5 units a day (that’s 125ml of wine or  ½ a pint of lager) can increase your risk by 5% and each additional daily unit increases the risk by 7-10%. Perhaps it’s time to ditch that ‘healthy’ glass of red?

Being healthy during treatment was much easier as it gave me a focus, but back in the real world, avoiding the bad stuff is really difficult. I try to avoid dairy, then someone buys me a cream filled cupcake; I want to reduce my alcohol intake then someone offers me a glass of wine; I need to minimise stress in my life but I have to go back to work; I want to eat less meat, then my mum cooks me the best beef casserole in the world. It’s incredibly difficult to eliminate all of the risks, so if anyone can tell me how to survive as a tee-total, sugar-avoiding vegan whilst everyone around me is gorging themselves on red wine and steak then I’d love to hear from you.  So although I am trying, perhaps I should heed the guidance Yoda gave to Luke Skywalker:

“Try not. Do. Or do not!! There is no try”

Blue Mum

Posted: May 20, 2013 in The Big C
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Blue Mum

I said in my last post that I wasn’t going to write about cancer anymore, however in the unpredictable relay of life, the cancer-baton has been swiftly passed to my mother who was recently diagnosed with breast cancer. Before you all start panicking, she’ll be fine, she’s just a little blue, really she is.

Mum’s diagnosis came as a massive shock. We were all relieved at the end of my treatment and looking forward to moving on, when we found out. Unlike me, who went from check-up, to life changing diagnosis in less than two hours, my poor mother had to wait nearly a month to find out the extent of her cancer. Waiting for results is horrible and mum was already psyching herself up for wigs and mastectomies by the time her appointment came round.

After a nail-biting month of not knowing what was going on, it was good news and on Thursday she had a small operation to remove the lump and sentinel lymph-node. After that she’ll have 3 weeks of radiotherapy & 5 years of hormone therapy. Job done.

The C-word has become far too familiar in our family of late, although having gone through it once already, we knew what to expect – radioactive injections, blue boobs & radiation burns – we know the drill. Mum is home now and doing really well. I’m just relieved as it could have been so much worse.

Farewell

I’m moving back to Manchester soon and saying goodbye to cancer world. I’ve had nearly a year in Paris Cottage country hospital and although the glorious countryside and Michelin star menu, courtesy of Jim and Doreen, is tempting me to stay, I’m ready to leave now. It’s beautiful here and it’s been a great place to rest and recover but I’m beginning to feel like I’m in Groundhog day. I’ll miss the country walks, the chat with village folk, the old fogies at my tai-chi group (which I secretly think might be a cult), the roast dinners, the getting to know my nieces and nephews, the hanging out with friends old and new, the going for coffee in beautiful places and most of all, the love and support my family & friends have given me over the past year.

Goodbye sheep & goats

Goodbye sheep & goats

Of course I can’t forget the Maggie’s centre which has been such a huge part of my life, as have all the friends I have made through having cancer. It’s a unique bond you form with people who’ve been through the same experience: the sharing of stories and battle scars and the hugs & tears over endless cups of tea. It’s really hard to put into words what Maggie’s does but you don’t have to be brave there, everyone just gets it.

I’ve been busy packing this last week and sorting through the debris of the last year. There are the chemo-beanies, the Picc-line sleeves, my wig Stevie, the surgical-socks and the pic’n mix of drugs left over from chemotherapy, all of which I’m not sure what to do with.  I don’t know whether to bin the lot or keep them for ‘just in case’. Stevie might be dragged out for weddings, but it’s my beanies I’m most attached to. Not only did they keep my head warm when I was ‘as bald as a coot’, they were my armour, they shielded me from prying eyes, so perhaps I’ll frame them or at least give them the burial they deserve.

It’s nearing the anniversary of my diagnosis and my mind is on replay. The anxieties I felt in the weeks before my diagnosis are now replaced by fears of recurrence. I’m now having 6 monthly check-ups and although they recommend vigilance, I have already convinced myself I have metastatic cancer. You might think I’m joking, but if you were in my shoes you’d be just as neurotic. There’s no way of distinguishing between the twinges of tissue healing (normal after a mastectomy), hormonal aches and pains and what could be potentially new tumours. They gave me the all-clear a couple of months ago, however the reality is that even the doctors don’t know unless they find something palpable. Scans are pointless unless you can feel a lump and even the best scanner in the world won’t pick things up at a cellular level. Obsessive self-examination it is then.

I met up with a cancer-buddy today and like me, she worries about the cancer returning. We were joking about how we’d already started planning the end of our lives, how we laughed! Tie up all those loose ends and have the holiday of a life time, that’s my plan. It sounds morbid but you have to think about these things. I’m not planning on dying any time soon, I’m just keeping my options open.

Now I’m on the other side of my annus-horribilis, I still find myself asking ‘did this all actually happen?’ I got cancer, my house burned down and then my mum got cancer, could life get any worse?! The answer is YES it probably could and if I’ve learned anything from this past year, it’s that life can throw all manner of unexpected shit at you and the best you can do is ‘BE PREPARED’ when the next pile of shit hits the fan. Get knitting that blanket of love and security because you never know when you might need it!

Of course it’s not all bad, good stuff happens too and I’m looking forward to a bit more of that. I have a little thing called life to look forward to.

The spice of life

Posted: February 14, 2013 in The Big C
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Tomorrow I will be celebrating both the end of my treatment and the beginning of a new chapter in my life. I’ve been thinking about how I want to celebrate and I have a few things on my bucket list: a month in Fuertaventura, a blow out in Manchester and some good old fashioned primal-screaming. The first two will have to wait, and I’ve yet to find a suitable location for the screaming, so I’ve decided to go for a curry instead.

Food is an emotive subject, and for me, curry is infused with both drama and passion. It’s more than just fuel.

Curry is the food that sustained me in the week following my cancer diagnosis. The curry-thon I had with friends on the Jubilee weekend of my diagnosis, is one of the most memorable meals I’ve ever had. We cooked on a biblical scale and the food was divine. The sanctuary of curry and comfort of friends held me together in those first few days.

From the curry god

My kinship with curry stems back to my childhood. I spent my formative years growing up on a council estate in Perth, where my parents’ Manchester accents and cosmopolitan tastes made our family unique. This was the 1970s, a time when spaghetti-bolognese was considered exotic and chill-con-carne was as hot as it got. Supermarkets hadn’t reached small-town Scotland and coriander was a condiment of the future.

Curry is one of the first meals I can remember my mother making, although it wasn’t until I started school that I appreciated how unique and experimental my mother’s cooking skills were.  In Scotland home-cooking was still very traditional – for most it was meat & two veg – and beef curry was a novel experience for my school friends back in 1970s Perth.

Oddly, curry is also the food I associate with my father’s death when I was 4 years old. The scattered, sun-bleached memories I have from that time, are steeped in sadness and rather bizarrely, beef curry.

The majority of palettes, even Scottish ones, have become more sophisticated since the 1970s, but back then I just wanted to be like everyone else. All I wanted was mince and tatties, in fact I just wanted Smash. To me this was the ultimate in sophistication: mashed-potato made by martians. I’d quite happily have survived on a diet of Smash, Creamola Foam and Space Dust. I didn’t appreciate it at the time, but mum was baking her own bread and doing things with lentils, so I never got the Smash.

We’ve always eaten curry as a family and Madhur Jaffrey’s recipes were a family favourite, however my spicy escapades really took off when I first went to live in Manchester. My then-boyfriend used to come and visit, and a mutual affection for the spice god, led to us spending much of our time in the curry mile. Infatuated with the the glitz and sparkle of the mile, his addiction was worse than mine and I began to wonder whether our relationship was becoming curry-dependant.

Best curry in Manchester: www.corianderrestaurant.co.uk

Best curry in Manchester: http://www.corianderrestaurant.co.uk

A student placement in Sri Lanka sealed our chilli romance. In Sri Lanka, the roti ruled and curry was a way of life. We ate, dreamed and breathed curry. Sweaty curry-pits were de rigueur. ‘Feel the burn’ took on a whole new meaning in Sri Lanka and here I learned a valuable lesson: food shouldn’t hurt.

Our joint affection for all things spicy was cemented upon our return to the UK when he got a job delivering, yes you’ve guessed it, curries.

Since my cancer diagnosis, my love affair with curry has taken on a new and interesting twist. I’ve learned that many of the components of curry have cancer fighting properties. Turmeric, garlic and ginger all have immune-boosting, tumour-busting properties. I wonder whether my years of eating curry helped keep the cancer at bay and stopped it from spreading.

The Curry Mile - I don't recommend it

The Curry Mile – I don’t recommend it

My spice trail has taken me around the world. From dal-bhat in Kathmandu, to Balti in Bradford, my travels have ensured my chilli barometer is set to high. Nowadays, I prefer my curries just on the cusp of blow-your-head-off. For me, anything without a bite is pointless. You might as well have sausage and chips.

Now as I reach the end of the cancer-caravan, it’s my faithful companion curry that I turn to again. Our relationship has been a tempestuous one, but I couldn’t live without my fiery-fuel. If spice is my god, then curry is my salvation. It warms the heart and nourishes the soul, and I know that as long as there’s curry in the world, I will be ok.

PS. This is probably going to be my last post for some time or at least my last cancer related post so I’d just like to say a BIG THANK-YOU again to everyone who has taken the time to follow my blog. Also a HUMONGOUS THANK-YOU to everyone who has supported me over the past 9 months – I couldn’t have done it without you!! Much love Katherine x