Posts Tagged ‘Positive thinking’

Here’s my latest Vita Blog post for Breast Cancer Care:

http://www.breastcancercare.org.uk/news/blog/clearing-myths-misunderstandings-about-secondary-breast-cancer

By the time this post is published, we’ll be halfway through the fuchsia-tinted month of ‘Pinktober’, or Breast Cancer Awareness Month.

Pinktober generates mixed feelings among the breast cancer community. While it has been a spectacular success in celebrating survival and generating funding for much needed services and research, there is still very little awareness around the more deadly form of the disease: secondary breast cancer.

There’s a lot of ignorance about secondary breast cancer, so I want to use this post to unravel a few of the myths surrounding the disease.

My #sbcselfie for YBCN

My secondary breast cancer selfie for the Younger Breast Cancer Network (UK)

There is no cure for secondary breast cancer

For many, breast cancer is now viewed as ‘cancer-lite’. It’s no longer perceived as life-threatening, even though 12,000 women die from the disease every year in the UK.

Statistics released by Breast Cancer Campaign illustrate how misinformed people are about the disease. Figures show that less than 25% of Britons realise that when breast cancer spreads, there is currently no cure. Over 75% believe that it can still be cured when it spreads to another part of the body.

For clarification here’s Breast Cancer Care’s definition:

‘Secondary (metastatic) breast cancer happens when breast cancer cells spread from the (primary) tumour in the breast to another part of the body. This may happen through the lymphatic or blood system to other parts of the body. This is also referred to as metastases, advanced breast cancer, secondary tumours, secondaries or stage 4 breast cancer.’

Once the cancer has moved from the original (primary) site, it cannot be cured.

Fear

Much of the stigma around cancer is fuelled by ignorance and fear. It’s a scary disease. People don’t like talking about it because it means facing subjects most of us would rather avoid.

Whether you have primary or secondary cancer, dealing with other people’s discomfort about the disease is something you get used to. When you’re diagnosed with secondaries, people’s reactions become even more extreme.

I’ve got used to people gasping in horror. However, being on the receiving end of this type of reaction isn’t easy. If you’re anything like me, you concoct a more palatable version of the truth, the version where they find a cure and you live happily ever after.

There’s even a code of silence between primary and secondary breast cancer patients. They’re frightened of becoming one of us and we don’t want to scare them.

During a recent trip to the chemotherapy ward, a newly diagnosed patient asked when I would be finished treatment. It was her very first chemotherapy session. She was terrified and needed some reassurance. I didn’t have the heart to tell her that this was the second time I’d lost my hair, and for me treatment would never end.

The discomfort people have with talking about secondary disease can make you feel like the Grim Reaper. We are an unwelcome reminder to the rest of humanity that our time here is finite. Death is an unfortunate reality we all have to face. Yes reader, cancer or no cancer, one day you will die.

Self-blame 10690298_809828669040075_4695988971273738545_n

Before my secondary diagnosis, I knew very little about the disease. My scant awareness was limited to the knowledge of a secondaries support group in my local Maggie’s Centre. My worst fear was joining that group and I avoided any association with it. For me, even being in the same room as people with secondaries was a risky business: stand too close and you might catch it.

My ignorance about secondary breast cancer was reinforced by those around me. After losing a friend to secondary breast cancer, I was shocked when a mutual acquaintance commented that ‘She always had a bad attitude towards the disease,’ as if she’d somehow brought it upon herself. I was reassured that with my positive attitude I would never become ‘one of them’.

The belief that the right attitude can have a positive effect on your prognosis is one of the most common misconceptions about the disease. But it’s a myth we’ve all bought into. In order to be a survivor, you have to conform to the ‘smiling, battling warrior’ ideal. Those who don’t will lose the battle.

Cancer is stigmatising enough, but for those with secondary disease the stigma is even greater. For as well as failing at survival, there’s an assumption that perhaps we didn’t try hard enough to beat it. It’s much easier for people to assume that we didn’t play the game than to accept the possibility it might happen to them one day.

There’s no doubt that having a positive attitude can enable people to get through treatment. However, research doesn’t support the idea that positive thinking can have an effect on prognosis, but suggests that pressure to engage in positive thinking may add to the psychological burden of cancer patients.

Until we destroy this mythical relationship between positive thinking and cancer survival, those of us with secondary disease are saddled with the added guilt that perhaps we didn’t try hard enough.

The future

It’s not all doom and gloom. Breast cancer charities are beginning to listen and give women with secondary breast cancer a voice.

Currently only one day of Pinktober is devoted to Secondary Breast Cancer Awareness Day. However, Breast Cancer Care has devoted a whole week towards highlighting some of the #hiddeneffects of the disease. Breast Cancer Campaign is raising awareness of secondary breast cancer with their spreadtheword campaign andBreakthrough Breast Cancer is campaigning to demand a fairer price for life-extending drugs.

As well as this, Breast Cancer Care and Breakthrough have worked with hospitals all over the UK to create a Secondary Breast Cancer Service Pledge, with a focus on improving standards of care and allowing secondary cancer patients to have their say.

Breast Cancer Care  is also addressing the issues faced by younger women, when it hosts the first ever Living with Secondary Breast Cancer as a Younger Woman event in London later this month. Breast cancer is much less common in younger women (one breast cancer in five is diagnosed in women under 50) and this is a rare opportunity for those of us with secondaries to meet up.

Writing this post has made me realise that we have a long way to go when it comes to spreading the word about secondary breast cancer. My own lack of awareness was due to fear and ignorance, and it’s unfortunate that it took a secondary diagnosis to make me more aware of secondary breast cancer. Until we become more comfortable with talking about it, secondary breast cancer will remain the pink elephant in the room.

You can read more from Katherine on her own blog killerkath.wordpress.com and also on Twitter @killerkath

Vita bloggers’ views are their own and do not necessarily represent those of Breast Cancer Care or Vita magazine.

 

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‘Stay positive, be strong & be brave’ are the three mantra’s most commonly thrown at you when you are diagnosed with cancer. There is a common belief that healing is simply mind over matter however, there is no scientific evidence that positive thinking cures cancer or any other disease. Lots of people with a positive attitude survive cancer, however many don’t. Conversely many people with a negative attitude also survive. I’m not knocking it, it’s just really difficult trying to be positive ALL of the time. I’ve managed to stay surprisingly positive throughout this whole experience however I still have my bad days.

This week brought more medical high jinx, starting with an MRI scan on Wednesday. My hair started to molt that morning, so I sobbed my way through the scan. This was compounded by having Paulo bloody Nutini blasting into my ears for the duration. My choice, god knows why but the other options were dire. I briefly considered ‘My guitar gently weeps‘ but that would have finished me off.

I really hoped I might be the lucky one and escape what is one of the worst side effects of chemotherapy. I’d been religiously drinking my magic juice & having a good tug on my locks every morning to check it was working. The joker (Jane Plant) who invented this elixir claims that it not only stops hair loss, but that your hair will become even thicker & healthier than it was before. Well, she was wrong & I want my money back. My hair started to fall out less than two weeks after my first chemotherapy cycle.

Following hair-gate, I started to feel unwell later in the week. I’d been in town with a friend and a walk in the park, I’d normally find easy, completely exhausted me. I woke on Saturday feeling worse. I should have come out of my neutropenic (low immunity) phase by then, so the hospital asked me to come in as a precautionary measure.

My white blood cell count was at zero which meant I had no immunity. My body was also showing signs of infection so they decided to keep me in. As a result I spent the weekend attached to a drip, being pumped full of antibiotics amongst other delights. Potassium chloride was my tipple on Saturday night. I make it sound awful but it wasn’t so bad.  My neutropenic status meant I had my own room and I got to lie down for two whole days which, for someone as active as me, is a novelty: note, positive thinking in action.

Being attached to a drip is a new experience for me. Trying to sleep, move, wash, go to the toilet, eat, type or read is quite tricky, as any slight movement triggers an alarm. When I was well enough yesterday they let me out for a little stroll and I took great delight in perfecting doing the pyjama/drip look. The only thing missing was a cigarette but hey, there’s always a next time.

The nurses were my saviours this weekend: they looked after me; counselled me on all things hair related; buoyed me up and most of all they made me laugh. Humour is one of the few safety valves I can rely on at the moment & their silly banter really kept me going this weekend:

Me: “Can I have a peppermint tea please?”. Nurse: “We dinnae dae any o’ that herbal stuff but I can put a polo mint in some hot water for you if you like!!”

My hair obviously took a back seat this weekend and I’d stopped washing & brushing it to minimise the loss. It was falling out in clumps, so I bandaged it up last night and woke this morning to a big matted bundle not very securely attached to my head. Think dreads, tramp-do, bad comb over and you get the picture. I knew if I brushed it, it would all fall out, so this morning I asked one of the nurses to book me in at the hospital hairdresser and shave the lot off.

This animal was attached to my head

This animal was attached to my head

It wasn’t easy, but getting my hair cut was actually a welcome relief and I feel like a massive burden has been lifted. Unlike Samson, cutting my hair gave me back some strength. When your body is failing you, it feels good to take back some control. I joked about giving up on vanity in an earlier post, but when weighed against your health, hair loss is insignificant.

My hair was going to fall out anyway and raising money for charity helped ease some of the distress I was feeling. Now it’s done, and people are undoubtedly shocked at seeing me without all that hair but there’s not a lot I can do about that. Wig shopping is next on my ‘to do’ list.

This week has been pretty horrific. In less than a month I’ve gone from being a healthy, happy young woman to an invalid living with my parents. I wish there was a big magic button I could press to make this all go away but I have no choice but to go through with it. As my mate Sal so aptly put it: “Chemo is like a superhero disguised as a baddie”. It does pretty awful things to you but it makes you better in the end. Bizarrely I’m looking forward to surgery, it can’t be any worse than this.

I’m thankfully home now and due to have my next chemotherapy cycle on Friday. I need to feel 100% before my body is subjected to another chemical overload so there’s a possibility it might be delayed. They’ve assured me if I become neutropenic again they’ll give me something to boost my immunity. I’m secretly hoping they delay this one as it’s my birthday on Saturday and I’d like it to be chemical free.

I was going to write a list of positives and negatives about being ill, but the negatives make grim reading, so in the spirit of positive thinking – because we all know that cures cancer – I’ll stick to the good ones:

1. My mum ironing my pants for me – she’s amazing, she irons everything! Pants aside, when you’re feeling lousy it’s nice having people to ferry you to appointments, look after you and cheer you up. My family & friends are pretty good at that.

2. Chicken soup. It’s so clichéd but on a bad day last week, my mum made chicken soup. Like the pants, it worked.

3. An appreciation and lust for life that I never had before. I was too busy. I want to live, it’s quite simple.

4. You get lots of presents & flowers. I’ve been on the receiving end of some pretty staggering acts of kindness recently. Folk have even offered me the hair from their head. People are good.

5. You get to jump to the front of most queues. Typical conversation:

Receptionist: “sorry we have nothing for the next week or so”

Me: “I have cancer”

Receptionist: ” Ok are you free now? We’ve had a cancellation”

Result! I call it ‘The Cancer gold-card’.

6. Catching up on all those box sets/films I’ve been meaning to watch. Bring on The Wire, Boardwalk Empire, Band of Brothers & Breaking Bad!

7. Indulging in some new hobbies. On my list so far:

-relearn the guitar. Previously I got to about 3 chords but never progressed beyond sore fingers

-improve my knitting skills beyond objects made of squares

-do some sewing just for fun as opposed to hard cash. That would be a novelty.

8. Having time to do some life admin. Investigate new filing systems, do some emotional housework & sort out that E-bay pile.

9. Taking a break from vanity. I’ll have to get used to looking at a very different me in a few months time. Apart from anything I’m going to save money on hair products.

10. Time out from life to simply contemplate and reflect. I’ve not had much time for that recently so I’m looking forward to whole year of daydreaming.

11. A late addition: listening to the Archers every day. I can’t tell you the names of any of the characters but, like beards, strangely reassuring.