Posts Tagged ‘Secondary breast cancer’

Living with uncertainty

Sometimes referred to as the ‘Sword of Damocles’, otherwise known as a pile of crap. This is the terrifying precipice those of us with metastatic disease occupy much of the time.

If you’re living with metastatic disease, you could have 6 months, 6 years or even longer. There’s no way of knowing.

A common reaction to those dealing with this uncertainty, is that “you might get run over by a bus tomorrow”. It’s always nice to be reminded that, as well as having a life-limiting disease, you’re still at risk of being run over by a bus, but try living with a demonic bus driver following you around night and day. He chases you through your dreams. He’s there revving his engine when you wake in the morning.

When the drugs are doing their job and everything is stable, you might get some respite, but he’s never far from your door.

My demonic bus driver has been on full throttle since November, when I found out that the EE combo (Everolimus/Exemestane) is no longer working. Since then it’s been an anxious time of waiting for treatment decisions to be made; finally starting a new drug in December (low dose cyclophosphamide), only to find out last week that this drug probably isn’t working either.

It can be hard to function in the ‘normal world’ with this kind of uncertainty hanging over you: What drug will they try next? Will it work? What if it doesn’t work? These are the questions that keep me awake into the wee small hours.

I find it difficult to cope with everyday life with this continual background stress. The small-talk people make in everyday life seems so trivial when there’s a real possibility that your days are numbered. When friends and family asked me what I wanted for Xmas, I couldn’t think of anything. There’s no “Gift of Life” on an Amazon wishlist.

Looking well

This might seem a hysterical over-reaction to those around me, when outwardly I look so well. This is one of the strange paradoxes of living with Stage IV. Despite having a body riddled with disease, many of us look healthier than patients with primary or early (Stage I- III) disease.

There are several reasons for this. The main one being, that many of the new drugs used to treat Stage IV are more targeted and less invasive than those used for treating primary disease.

With primary disease, the big guns are drafted in, with chemotherapy often leaving patients as bald as a coot and as sick as a dog. With secondary disease it’s different. Treatment is ongoing and quality of life becomes just as important as controlling the disease. Our medical teams have the difficult job of finding a balance between the two.

Treatment for secondary disease can still make you ill, but if you’re lucky you find a drug that not only keeps the cancer at bay, but which allows you to have a reasonable quality of life. This was the situation I found myself in last year on the EE combo, where I enjoyed around 8 months of stability with very few side effects, aside from the odd mouth ulcer and a little fatigue.

With no visible symptoms of disease and drugs with minimal side effects, it’s easy to forget that you have a life-threatening illness. Denial is a comfortable retreat when everything is stable, but when the shit hits the fan, the demonic bus driver is back with a vengeance.

More recently, physical symptoms have made it increasingly difficult for me to bury my head in the sand. Recent blood tests showed that my liver function is all over the place, I’ve had an increasingly painful left hip and I’ve been having ocular migraines (a completely new symptom).

I’m back in treatment limbo: waiting for scan results; investigating different treatment options and potential trials; as well as looking into ‘alternative’ cancer treatment centres. My situation feels like it’s becoming increasingly desperate.

For this reason, my business Killer Kilts has been put on the back burner for the time being. I have no motivation to run a business when my life hangs in the balance.

My body is riddled with cancer – I have cancer in my liver, my lungs, my brain and my bones – yet to look at me you would never know.  I have days when I’m really exhausted and sometimes it’s hard to gauge how far I can push myself. This weekend I walked up Mam Tor, my first big hill in ages, which felt like quite an achievement for someone with Stage IV.

Looking so well can make it difficult for friends and family to comprehend the gravity of your situation. Breast Cancer is often viewed as the easy cancer to have, but the 5 year survival rate for Stage IV breast cancer is less than 20%. This means 80% of women with Stage IV don’t make it to 5 years beyond diagnosis.

This is evident in the support groups I belong to, where we’ve lost so many girls recently, it’s become quite terrifying. Nearly a quarter of the girls I met at the Breast Cancer Care ‘Younger Women with SBC event‘ in October 2014 have died in the last year: Jane, Carol, Claire, Charlotte, Alison, Emily, Rashpal, Lynn and Dawn. Not only were these friends, they were wives, sisters, daughters and mothers, young women with a future ahead of them. With 12,000 deaths a year in the UK from secondary breast cancer, these women are just the tip of the iceberg.

Losing friends is one of the toughest things about living with this disease. We mourn our friends passing and pray that we’re not next. Ours is a precarious existence, where we cling on to hope and drift around in denial, because the reality is often too horrific to contemplate.

If you’d like to do something to support women (and men) with secondary (Stage IV) breast cancer you can donate to one of the following charities or sign up for one of their campaigns:

Second Hope is a brand new UK charity and the only one specifically for people living with advanced breast cancer. Their focus is on raising awareness, providing support, campaigning and funding research into the disease.

Breast Cancer Now campaigns and funds research with the aim that by 2050, no-one will die from the disease.

 

 

Advertisements

In the words of my misanthropic hero, Larry David, this week has been ‘Pretty, pretty good‘!

I had some good news which hasn’t quite sunk in yet. I found out the tumours in my liver and lungs have either shrunk or remained stable. I now have one, small but stable tumour in my liver and a few small tumours in my lungs. The bones mets (metastases) are also showing signs of healing.

I didn’t expect to be here now. When I was diagnosed with brain mets in February, things were looking really bad. If you remember, around that time I also had progression in my lungs and liver. I assumed it was the beginning of the end.

I’m not getting too complacent because this can happen with treatment. A drug will work for a while until the cancer becomes resistant, leading to further progression.

But, I feel really well at the moment. I’ve recovered from surgery and the side effects of my current drug regime are minimal. This means I’m getting my fitness back and I’ve felt well enough to go hill-walking over the past three weekends.

The synergism of the Care Oncology drugs with regular treatment (Everolimus and Exemestane) seems to be working really well for me, as I’ve had two lots of good scan results since starting this combination. 

For the first time in a year I’m beginning to feel like a normal person instead of a cancer patient. You’ve got no idea how good that feels.

I’m off to Italy on Friday, but I’ve got lots going on when I return. Killer Kilts relaunch is planned for the beginning of October, I’m doing my yoga foundation with the British Wheel of Yoga and I’m thinking about going back to university. Life is pretty, pretty good!

http://www.breastcancercare.org.uk/news/blog/my-christmas-wishes

As I write this post, the festive season is upon us. Admittedly I’m not that keen on Christmas. I’ve always felt more ‘Bah! Humbug!’ than ‘Ho, ho, ho’ about Yuletide. All that forced jollity makes me turn all Ebenezer. But, ’tis the season to be jolly, so in an attempt to rekindle the joy and excitement of Christmas past, I’ve decided to write to Santa Claus and see if he can make some of my festive dreams come true.

5870

Dear Santa…

It’s been a few years since I last wrote to you and, although I’m not one to hold a grudge, you never did give me that pony. OK, maybe I was asking for a bit much, but what about the Barbie house and the Cabbage Patch Kid? I know you’re busy, but you’ve got some serious making up to do.

Here is my wish list in no particular order.

1) I’d like my old body back please. I was more than happy with the old one. Perhaps my boobs were a little wonky but they were a damn sight prettier than what’s there now. I realise this is a tall order, but can you please erase the scars and the general wonkiness this disease has inflicted on my body. I’m not asking for much, just a little symmetry.

2) While we’re on the subject of boobs – can I have a new nipple please? The one that was started earlier this year never got finished. I am still ‘blind’ on one side. Yes I’ve got secondary cancer, but I’d still like to look normal. I don’t think this is too much to ask. By the way, I’m curious to know what happens to all the old nipples? Is there a nipple heaven? This is a question that fascinates me and my nipple-less friends.

3) Oh, and I’d like some tattoos. You know the kind of thing – something pretty, floral and feminine that might also disguise some of the scars. I reckon if you find a clever tattoo artist they might even be able to make me look symmetrical.

4) I’d also like some padding (like a ‘foob’ or prosthesis but bigger) for my right buttock. Perhaps I should elaborate. My right buttock came to the rescue in my hour of need (tissue from my bottom was used to create my reconstructed breast) and is now quite literally staring me in the face. I’m very grateful to my derriere for helping me out, but it’s left me slightly lopsided. This can make life quite uncomfortable. Have you tried riding your sleigh with one butt-cheek?

5) Can I have some more hair please – but only on my head? Anything below the nose is surplus to requirement. You know what I’m talking about, Santa. Those pesky chin hairs and the pubic triangle, which for some reason always grows back quicker than anything else. Isn’t there a button you can press to make the head-hair grow faster? It’s winter, my head is cold and I’m fed up with people thinking my crew cut is a ‘lifestyle’ choice. And no, a wig won’t suffice. I want real hair, the kind that clogs up the bath. I want to swish again!

6) This is a big ask, but can you please transport me back to my old life for just one weekend? I’d like to remember what it’s like to wake in the morning without the cloud of cancer slapping me in the face. I promise I won’t take anything for granted ever again. Please.

7) Can you ask one of your elves to create a dating website for people with life-limiting illnesses? Secondary cancer isn’t exactly what you’d call a big selling point. We single folks need some help with marketing ourselves. Friends tell me that the dating world is full of commitment-phobic men, so perhaps we’re at an advantage? Here’s my profile header to get you started: ‘Breast cancer patient seeks understanding man with dark sense of humour for short-term commitment. Must like scars.’

8) I want to grow old and wrinkly. No, really I do. Before my cancer diagnosis I used to slather my face in Boots ‘Protect and Perfect’ anti-ageing serum. Nowadays my benefits payments don’t stretch to wrinkle cream, and even if they did I wouldn’t waste the money. Wrinkles are now very low down my list of priorities. Everyone else is obsessed with staying young, but I want to grow old. I’ll never be a grandparent, or even a parent, but I’ll gladly settle for being a dotty old aunt.

9) Can you please give me and all the other women living with this horrific disease a little more time? I’m sure most of us would settle for chronic disease status, until they find the elusive cure. I’d happily trade all of the above if you can give us all a little more time. Actually, make that a lot more time.

10) They keep saying we’re going to ‘beat cancer sooner’. This is a bit too vague for me and everyone else living with cancer. Sooner can’t come soon enough. I’d be really grateful if you can ask ‘them’ to be more specific and perhaps bring sooner forward. I’ve got a life to plan, and I’d like to put some dates in the diary.

I realise I’ve already given you a big list and I know it can be difficult shopping for other people. If you’re still looking for inspiration though, I’d also like a new dressing gown, some Liz Earle No. 15 perfume, a Vitamix, some Diptyque candles and some new slippers.

It’s not long till Christmas, Santa. You’d better get to it!

Katherine

PS Merry Christmas

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.

 

Here’s my latest Vita Blog Post: http://www.breastcancercare.org.uk/news/blog/i-m-living-cancer-not-fighting-war

As a cancer patient and blogger, words are something I obsess about. A couple of weeks ago, in the midst of last-minute holiday preparations, I got a call asking if I’d be interested in going on BBC Breakfast to give a patient’s perspective on the language used around cancer. Never mind that I hate public speaking and had less than 24 hours to prepare, this is a subject that really interests me, so I accepted the challenge.

10700729_10152785656515126_8224220950925371262_o

The discussion got off to a bad start when I was mistakenly introduced as someone with ‘terminal’ cancer. This was a simple misunderstanding. However, it highlights the importance of using appropriate language with cancer patients. The word terminal only applies when patients have run out of treatment options and are reaching the end of life. I have secondary, not terminal, disease.

The discussion I took part in refers to recently published research which highlights that the use of military metaphors (like bravery, fighting and battling) can be damaging to patients with terminal cancer. Although research in this area is long overdue, the findings won’t come as a surprise to those living with the disease.

Mind your language

I first became aware of the peculiar language around cancer after my primary breast cancer diagnosis in 2012. My curiosity was tweaked by the well-intentioned messages of support I received from friends and family.

Suddenly everyone had an opinion on how I should tackle the disease. I should eat less cheese; eat more broccoli; juice 13 times a day; eliminate stress; restore my pH balance; and deal with those unresolved emotional issues, undoubtedly (I was told) the root of my disease. But more than anything I should fight, I should battle and wage war on those renegade cells intent on killing me.

The message was clear: I had a battle ahead, but if I adopted the right attitude, my bravery and courage (and let’s not forget positive thinking, the most powerful weapon of all) would be rewarded with the ultimate victory, survival.

To begin with I played by the rules. When my target was a tangible one, I found the language of battle empowering. As I quaffed my daily juice I imagined the cancer cells running for cover: ‘Quick run, she’s drafted in the broccoli!’ I pounded the pavements and began a daily yoga practice. Every stride and stretch brought me another step closer to victory.

I developed an inner warrior, as suggested by one of the numerous ‘beat cancer’ books I read. Mine was Ellen Ripley, the shaven-headed heroine from the Alien films. I envisaged her blasting the cancer cells into submission. I thought I’d found the perfect ally until my brother pointed out that the aliens in the film have a tendency to erupt from victim’s chests. This parallel was a little too close for comfort.

I ditched the inner warrior and as someone now facing a lifelong ‘battle’, the language of war no longer sits comfortably with me.

Bravery

When you’re a cancer patient, you get used to people commending you on your bravery and courage. But I’ve always felt awkward about wearing these badges of honour.

Bravery implies strength and fearlessness, but labelling people in this way puts added pressure on them to be good and uncomplaining patients. In the ‘battlefield’ of cancer, fear, anger and depression (normal reactions to a cancer diagnosis) are viewed as weak and negative traits, perhaps even cowardly. You’ve got to ‘be strong’ and you ‘have to fight this’.

Fighting

I consider myself both strong and resilient, but when you’re living from scan to scan you realise that mental strength has no effect on the result. It can be quite demoralising continually being told you can fight this, when actually the weapons are in the hands of the doctors treating you and the researchers working on the next generation of cancer drugs.

This might sound like I’ve resigned myself to fate, but I take a very active role in my treatment. I look after myself physically and mentally and I’m always aiming towards a cancer-free future. However, cancer is an unpredictable and pernicious disease. It takes more than attitude to fight it.

Losing the battle

Like many before me, I believed that my fighting spirit and positive attitude played a part in me beating the disease. But my cancer returned, not once but twice. I now face a battle which will never end. Is it my fault that the cancer came back? If I lose the battle is it because I didn’t try hard enough?

The implication of guilt and failure is a common sentiment among those living with secondary and terminal disease. As if it’s not bad enough living with a life-limiting illness, we live under the shadow that we may have failed in some way.

Perhaps if I hadn’t eaten that cheese sandwich; if I’d juiced 13 times a day; if I felt more ‘blessed’ (cancer is a lesson, don’t you know?) and less stressed about having this horrific disease then it might not have come back. Perhaps I should have tried harder. I’ll never know, but these are sticks I and other cancer patients beat themselves with.

A fighting spirit gives rise to hope and optimism and there’s definitely a place for these for patients at any stage of treatment. However, military metaphors offer little protection for those on the front line and we need to think of better ways of talking about cancer. It’s a disease, not a war.

My attitude today is more one of hope and optimism than GI Jane. Some days I struggle. Some days I cope. I accept the treatments offered and manage the side effects to minimise the impact on my life. I live to the best of my ability with a disease for which there is no cure.

I am living with – not dying of – secondary cancer.

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.

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.