35 And Rising

I’m 35 today. 35. I never thought I would make it. I never thought I’d make even near 35! I was diagnosed with stage 4 breast cancer six weeks after my 31st birthday. At the time, my back was so sore, I could not straighten it, my left nipple had disappeared into my breast and I couldn’t walk even two metres without being dangerously out of breath. I was a very symptomatic metastatic breast cancer patient. I was so unwell that the doctors weren’t sure I was strong enough to handle treatment. I think the deciding factor was my young age. Telling a 31 year old woman that she’s too far gone and packing her off to hospice is something I reckon most doctors will avoid. Treatment was worth a shot. Without trying, I think I’d have died within a year or even six months.

And I responded. I responded to treatment. Taxol shrank down those tumours and then hormonal treatment kept the cancer at bay for more than two years, until last summer. The cancer then spread to my bone marrow and I have spent the last eight or so months trying to get on top of that. It’s been tough. The dreaded chemo was back on the table. A two week hospital stay was also involved. I spent probably seven of those eight months in bed. GemCarbo + Letrozole failed as a treatment. I remained pancytopenic* throughout that regimen. So I switched to Eribulin. The first few cycles told of little improvement. But from cycle three onwards, things were looking up. I was doing housework again. Wanting to get out of bed. I could breathe again. My appetite came back! Now, after four cycles, I actually feel like a human again. I don’t even need my wheelchair at the moment. It’s hard to imagine how bad I felt at my nadir. Isn’t that always the way?

So, 35, how are you? I’m not sure I want to live another four years of the terminal cancer lifestyle but I’m glad to be alive today.

Happy St. Patrick’s Day, everyone!

*pancytopenia is when more than two of your blood compenents are low. Every blood component was dangerously low for me.

My Podcast Episode For REACH Beyond Cancer

A few months ago, I was contacted by Ciaran Fairman of the REACH Beyond Cancer website and asked if I would like to record an episode of his REACH podcast series. He had read my blog and liked my brutal honesty when it comes to living with terminal cancer. I thought about it for a few days and decided to go for it.

There were a number of factors behind my decision. I had recently watched a documentary about the September 11th attacks and in it, one of the widows of a firefighter who died that day said that she was glad that she had a surviving phone message from him. She said that people told her that you forget the sound of your loved one's voice and that she could easily believe that would have happened to her if she did not have the phone message. So, for a while I had been pondering recording my voice somehow for posterity. I also have a great ability to jabber on once I warm to my theme, so knew I'd have no problem answering questions on my cancer. Plus, I like to do anything I can to be of help to others in the same situation and help them feel less alone. So I thought it would be something else that would be out there in the blogosphere for other terminal cancer patients to consume.

With his REACH Beyond Cancer website, Ciaran aims to show how exercise can aid recovery from cancer, build strength in cancer patients that will help them through the treatments, and improve survivorship. The podcast series includes interviews with nutrition and exercise experts, scientists and cancer patients.

The links to both my podcast episode and the REACH website are below:

I'm episode 38:  http://itunes.apple.com/us/podcast/episode-38-crazy-cancer-lady-living-with-terminal-cancer/id1223832935?i=1000409059753&mt=2

The REACH website: https://www.reachbeyondcancer.com

I hope you enjoy it!

A Series Of Unfortunate Compromises

In the first three months after I was diagnosed, I was a basket case. For three months, I really only spoke to my husband and my mother. And many of the conversations with my mother were often unilaterally angry (poor woman). Occasionally I'd also talk to my father and my sister but only if I really had to. And I have a good relationship with my father and a pretty good one with my sister. So for me to barely speak to them both for a good chunk of time just shows how scrambled my brain was. Friends were ignored completely in that time. They were so supportive though; giving me space, happy to keep a sporadic one-way conversation going until I was ready to talk.

As much as I was mentally in turmoil then, one thing became apparent to me very quickly: my life was now severely compromised and would be until I died. At the time, I could barely breath. My mother had to cook and clean for me. I could barely shower, I was so breathless and so in pain. My working life was over. Life closed in overnight. It was an exceptionally difficult reality for a 31 year old woman to face and accept. Before I started experiencing the pain and breathlessness that led to my diagnosis, I used to cycle everywhere, sometimes with a backpack full of heavy groceries on my back. It was so hard to accept that that part of my life was now over.

My treatments have all worked well for me and that has helped to expand my world a little since that awful few months three year ago. I can now cook and clean and shower and have been doing so for more than two years now. But compromises are still there and these still restrict my life and always will. Because I am married, I am ineligible to receive social welfare because my husband's quite modest income is taken into account. The threshold is very low. This leaves us very badly off. Compromise. My husband proposed to me in a hospital bed at my lowest ebb. I'm not the most girly girl but I did dream of a romantic, happy proposal. Instead, I was hairless and in mental turmoil. Compromise. The medications I take make it really difficult to lose weight and therefore I am not happy with my appearance. Compromise. I felt and looked really unattractive on my wedding day. Compromise. Because of our low income and the sky-high rents where I live, we must stay in our rent-controlled apartment even though it doesn't really suit us any more. Compromise.

Compromise, compromise, compromise. I could go on.

And this is forever until I die. And my husband's life is also compromised too. That heaps guilt on top of everything else. I think this early realisation exacerbated my initial period of mental turmoil. I felt so trapped and found it so difficult to get my head around the fact that my life was now so constrained. The lives of my friends and my sister were taking flight: new jobs, romantic proposals, houses, savings. My life could not have been more different and it was for good. And I still struggle with that gulf between me and them. It has become a little bit easier to deal with, mainly because I compartmentalise my feelings when a friend tells me of exciting developments in their life. But it is still hard.

And there are no easy answers. There's no neat resolution. It just is what it is. I will be broke and fat and my health will decline and then I will die. That's how this plays out.

I told my husband the other day that if I could choose one word to describe my feelings towards cancer and what it has done to my life, that word would be: disappointment. That's the overriding feeling. This is it? This is what I get? What was it all for? I always struggled with existential angst and being diagnosed with a terminal illness has only heightened that. I really felt the universe was laughing at me when I was diagnosed. I had wasted my life wondering what the point of it all was and it was as if the diagnosis was underlining it all: there is no point!

A bleak entry today and I apologise for that. But I guess part of the purpose of this blog is to try and express some of the thoughts that crowd my head at times. I'd like to say I feel better after writing this but as I said, this is something that will not resolve. It's an open-ended problem that I get to grapple with every day. Yay!

My Hiatus

I haven’t really touched the blog this year. It’s not because I’ve lost interest. There’s a few topics I want to tackle and I did say on Twitter that they were upcoming but I found that thinking about these things put me in a dark mental place, so I’ve hit repeated roadblocks. For example, the subject of assisted dying - a topic I have a great interest in (I’m in favour of it, in case anyone is wondering). Then I asked myself: why am I putting pressure on myself if it’s not good for me mentally? Nobody expects me to write these posts. Nobody wants me to jump into a pit of despair just so that they can read a new blog post. So I took a step back from the blog. I’m still new to this blogging malarkey and I’ve learned new things about myself in the process. Baby steps. I’ve learned not to mention not-yet-written blog posts on Twitter, that’s for sure! So I’m just going to ease myself back into it and see what happens. Later this week, I’m being interviewed for a podcast show about cancer. I’m really looking forward to it as I’m a talker! I’ll post a link here when it is available along with information about what the show is all about. I hope you’ll enjoy it! Oh, and I’m 34 in ten days. Never thought I’d get past 32 or maybe 33 if I was really lucky. So, YAY! Bye for now. xxx

A Useful Member Of Society Once More!

I just want to write a quick post about a positive update in my life. My existence generally tends toward doom and gloom these days so it’s nice to have something good to write about for once. A friend recently started a blog which is all about her efforts to live as close to a zero waste lifestyle as possible. A college professor once told my class that it’s very difficult to proofread your own work due to bias and the fact that you know what it’s supposed to say and so you tend to gloss over the mistakes. This was very evident in my friend’s first blog post, which was riddled with little mistakes despite her being a good writer. It’s not so important on blogs such as my own which will have a pretty limited readership and is more just there to help me vent. But she is hoping to build up a large readership so it needs to be professional. I tentatively offered to proofread her posts before she publishes them. I didn’t know how she would react but she was very happy to accept my offer. She understood that it’s a good idea for an independent party to view the posts as mistakes will be more apparent to them. So, I’ve been doing that approximately once a week for the last four months or so! It’s nice to feel useful again and exercise the ol’ grey matter. I was worried at first that the notes and corrections I made on the posts were a little bit blunt but she has responded very positively to them. I think I’ve missed my calling as a sub-editor. I don’t want my family or friends reading my blog until after I’m gone so I’m not going to name her blog in this post but if anyone wants to visit it, don’t hesitate to ask me here or on Twitter at CrazyCancerLady and I’ll get back to you.

Happy Christmas!

Have a great one wherever you are!

And That’s An Order!

Not Quite Ready For My Beatification

Just a quick post to say that cancer has not made me a saint, it has not made me more Zen, it has not made me wiser, it has not me a student of stoicism.

Cancer has made me:

1) quicker to temper

2) less tolerant of whingers

3) more brittle

4) more blunt

5) too forthright

6) angrier

7) MUCH more flaky and unreliable

8) lazier

I could go on and on.

On top of everything else they are dealing with, do not expect terminal illness-sufferers to become better people. We have enough on our plates without having to think about conforming to your expectations of how the illness should change us. And we are not oracles either, being diagnosed with a terminal disease hasn't bestowed upon me greater insights into the human condition. I'm as clueless as I ever was before. The only difference in that I'll be more unequivocal in communicating this fact to you!

A weight has been lifted. Thank you and goodnight.

No Ankle-Biters For Me Please!

Who would have thought there was any silver lining to accompany a terminal cancer diagnosis? For me, there actually is one tiny sliver of consolation. For many young women who are diagnosed with cancer, terminal or otherwise, their thoughts quickly turn to their fertility. I understand that. Many if not most women assume that they will carry a child at some point in their future. Many women desperately want to be mothers. And some cancer treatments will, at the very least, cause temporary infertility. If a young woman is really unlucky, her fertility may never return. For patients with cancers that are more likely to be put in permanent remission, egg-harvesting can sometimes be carried out before treatment begins. However for those of us who are unlucky to receive a de novo terminal diagnosis, this isn't really an option.

For me, my terminal diagnosis clarified something for me, a question I batted around my head for most of my adult life – do I want to have children? When I received my diagnosis, children didn't cross my mind. In the first weeks after diagnosis, children didn't cross my mind. In the three month grieving period I went through once the initial shock and anger subsided, children didn't cross my mind. I was mourning for the life and future that I was going to lose. I thought of my husband, of my friends, of my family, of them all living on without me, dealing with their loss, experiencing new and interesting things, living. I felt held back. It was mental torture. After a few months and after reading a number of blogs by young, female cancer-sufferers, I realised. I realised that the fact that I would never be a mother had simply not occurred to me. In that moment, it dawned on me that I was not only ambivalent towards being a mother but actually completely uninterested in it. I had no conscious or subconscious desire to pass on my genetic material. (and, having got terminal cancer at 31, maybe that's just as well!)

I know several women who are not maternal. The reason I wondered if I did actually want children was because I differed from them in a few ways. Unlike them, I have in the past pondered baby names and I loved dolls as a child. I definitely “mothered” those dolls. But as I got older, interest in children fell away. I am also really awkward around children and don't really know how to interact with them on their level. I feel apprehensive if I'm asked to mind someone's children because I know that it will be an stilted affair. But despite all that, I thought it would be different if I had children of my own. And it would be. If only I could decide if I wanted them. Well, for better or for worse, now I know. Cancer takes and takes and takes. It's a greedy swine. So, as a cancer-sufferer, I reach for any positive I can, anything that will make this experience less existentially-taxing. I am glad that I don't have the anguish of realising I will never be a mother. I experience enough guilt in my life these days without another weight being shifted on to my shoulders. I have nothing but sympathy for young women in my position who desperately wanted to carry and give birth to a child. You all have my deepest commiserations. I cannot imagine what it feels like. Genuinely I can't. Thanks, cancer. Now there's two words, I never thought I would type!

Things That Make Me Glad To Be Alive #2 - Beautiful Iceland

Photos from my September visit - sadly there too early to see the Northern Lights. I'm not a travel bore but I really, really recommend visiting this wonderful country. And if you have your wits about you, it's not too expensive. Plus the food is of a very high standard. All photos are unfiltered.

I Wish This Was All My Medication Entailed...

Things That Make Me Glad To Be Alive #1

I don't wish for my blog to be all doom and gloom. So I'm going to periodically include photos, video clips and other miscellany that make me realise I'm glad to be alive.

First up, this undoctored photo of a beautiful sky that I took from my apartment balcony one evening last week.

Terminal or chronic?

Can metastatic breast cancer be described as a chronic illness? I've recently discovered that this is a contentious topic. I've also discovered that I have strong feelings on the subject. I didn't realise until very recently that I do, but I do.

Around eight years before I was diagnosed with de novo metastatic breast cancer, I started to experience moderately severe stomach pains. Every time I tried to eat or drink, I would double over in agony and need to vomit up what I had just ingested. I went to the doctor. She prescribed indigestion medication that did nothing. But I duly waited the customary two weeks. When there was no improvement in that time, I returned to her. As my bloodwork showed that there was inflammation somewhere in my body, she ordered an CT scan of my stomach and bowels which showed inflammation in the colon. I was referred for an MRI, which is a long wait where I am from. In the interim, I developed an abscess which, left unchecked, could have caused me to develop septacaemia. I was rushed to the emergency department of my local hospital in a very bad state. I had a very high temperature and was close to passing out from the pain caused by the abscess. This resulted in my hospitalisation, where after an agonising stay and a smorgasbord of tests and biopsies, I was diagnosed with Crohn's disease at the age of 23. The eight months post-diagnosis were challenging, involving surgery, protracted daily wound-dressing and even more tests. I had to leave my final year of university in order to receive the treatment. But I never, ever felt that I would not survive. The brush with septicaemia was the closest I came to death and I didn't even develop it. With the right management, I knew that I could expect a normal or nearly-normal life expectancy. Some people do sadly die from Crohn's disease but the mortality rate for the disease is relatively low. It used to have a more bleak prognosis but in the last 50 years or so that has happily changed.

My experience of suffering from a chronic illness is one of the reasons I don't think of metastatic breast cancer in the same way. Its mortality rate is virtually 100%. The reason it's not quite 100% is that sometimes a sufferer will die of something else before the cancer gets them. The people who make it to ten years are outliers, never mind people who live past the ten year mark. Most people will still succumb within five years and sadly some of those in the first year or two post-diagnosis. If a disease is truly to be considered chronic, the people who pass away from it should be the outliers. Chronic illnesses can of course come with attendant chronic pain and I would never downplay that. It's a mental trial in itself. But there is a level of predictability to chronic illness that you simply don't get with metastatic cancer.

I know you might ask “What's the problem with metastatic disease being considered a chronic illness if it gives people comfort?.” There are a number of problems with it, as I see it. The general public already has a poor understanding of what stage 4 breast cancer entails. It doesn't help that there are too many names for it already; secondary breast cancer, metastatic breast cancer, stage 4 breast cancer, terminal breast cancer. And to confuse matters, sometimes these names are ran together redundantly, especially in the media; stage 4 metastatic breast cancer, secondary stage 4 breast cancer. You get the idea. Are we going to add another name to the mix? That fills me with a cold dread. And I think that calling metastatic breast cancer a chronic disease feeds into the misconceptions that so many people hold about the disease. It's widely thought amongst the general public that breast cancer is now a curable illness. Diverting some of the monies raised by charities towards research into metastatic disease is still a herculean task. If the notion that it is a chronic disease enters the public consciousness, won't that exacerbate the problem? “Why would I support research into chronic breast cancer? People don't die from chronic diseases!”.

There is a more upsetting thought - to me at least - to consider in relation to all this. A lady I know through an online support group astutely pointed out to me that if it was to become more common to refer to metastatic breast cancer as a chronic disease, that may compound the anguish of sufferers who succumb quickly to the disease - “Did I not fight hard enough?”, “If it's chronic, why am I now dying, only two years after diagnosis?”. Many sufferers of stage 4 breast cancer are already sensitive to the language surrounding cancer, that implies that you're one of life's losers if you die from it. I think that referring to it as a chronic disease further marginalises those who won't reach the five year mark or even the two year mark. I think for it to be considered a chronic disease, treatments would need to exist that work for everyone within a cancer subtype and those treatments should give sufferers a normal or nearly-normal life expectancy. For it to be considered a chronic disease, people surviving more than 10 years should be the norm, not the outliers. In fact, 10 years would be on the low side of survival statistics for most chronic ailments, I should think. Like with Crohn's, people dying from the disease should be the outliers. I hope this happens in the future. But to get there, we need to make sure people don't lose sight of the gravity of the disease. Calling it chronic now is a feelgood measure that may prevent achievement of the goal of seeing this horrible disease become something you can die with, not of. That should be the criterion to aim for and we are nowhere close to the day when that is a reality. By attempting to gloss over the realities of metastatic breast cancer, we could be hobbling metastatic research goals whilst making sufferers feel worse about themselves in the process. It's an own goal.

Guilt

I don't believe in soulmates. I don't believe that my husband and I were the only ones for each other. We met, we hit it off, we became a couple, we fell in love. My husband is in his mid-thirties. When I am gone, I very much want him to find love again, to move on. Thoughts of my husband being lonely upset me much more than the thought of no longer being present on this earth. In the wake of my diagnosis, I was plagued by guilt, the feeling that my husband had chosen the wrong one.The lack of belief in soulmates has a strange duality to it. On the one hand, it means that I believe he can move on with someone else in the future. On the other hand, it makes me think that in the six years we've been together, he could have met someone else who would be able to shimmy into old age with him. So it both does and doesn't bring me comfort all at the same time. It's troubling. And it will never resolve. I've told my husband that I am never not going to feel guilty about the fact that I'll be vamoosing sometime in the near future. And it's truth. Guilt will be a constant bedfellow of mine until I breath my last.

This seems to be very common among terminal illness sufferers, if not universal. Guilt can assail me at any moment - "Why was I so mean to that girl in school?", "Why did I borrow that money from my mother that I now can't pay back and she can scarcely afford to be without?", "Why won't I be around to help my parents in their dotage?". It is acutely felt at times, almost the point of hypersensitivity. And there is no resolution, not really. And that is layered on top of all the other crap that comes with this diagnosis. I must prepare myself for death, cope with the treatments and pain and progression and on top of it, deal with the roiling mental turmoil that comes with dealing with the niggling thoughts that sometimes crowd my head. Terminal illness never, ever lets up. It is multi-faceted. It's an endurance test. A never-ending obstacle course. From the moment the consultant responded to my query "Is it cancer?" with a hesitant pause, any facet of my life that was carefree took flight forever. Life will never be carefree again, I will never again experience the pure excitement of hope and insouciance and burgeoning opportunity. Any piece of happiness I will ever feel again will be offset by the deadening and ever-present reminder of the life sentence I have been handed. That was something that I felt keenly and actively mourned for in the months after my diagnosis. It has got easier to deal with but it will always be with me to some extent. As clichéd as it sounds, a part of me died when that consultant hesitatingly confirmed my worst fears. And the part that died was replaced by something much worse - guilt that will be with me forever more.

Pink Ribbon Culture - Wilful Ignorance?

My mother was diagnosed with breast cancer in December 2007 at the age of 56. It was caught early. She had felt what she thought was a lump in her right breast. A mammogram was ordered. Nothing showed up in her right breast, but the mammogram picked up cancer in her left breast. She was stage 1. She had a lumpectomy. She underwent a course of radiation. She was prescribed endocrine therapy for five years. The familiar tale of scores of women throughout the world.

My mother is a pragmatist. She knew her chances of survival were excellent but she also knew that there was a chance that the cancer might recur. We all knew actually. We were all clued in. She is still here, ten years later and the dastardly disease has not reared its ugly head again. Except in her youngest child. She will now have to witness me dying from the disease.

But what has surprised both of us since my diagnosis is how few early stage sufferers realise that their cancer can recur and possibly metastasise. My mother was aware that it could ten years ago. Where did she get this information? And why do others not know this? Has pink ribbon culture become more pervasive in the last ten years? Or was it as bad ten years ago? Was the information always there and is it now?

I was diagnosed de novo stage 4. If I was diagnosed earlier, I would want to have all the information. Are oncologists so keen to reassure their patients that they don't want to send any negative information their way? Are they afraid that the patient might be angry with them for telling them that there is a slim possibility of recurrence and metastasis? Part of the reason why I was diagnosed so late was because my general practitioner gave me false hope, telling me that it couldn't possibly be cancer in the breast of the 28-year-old sat in front of him, boobs flapping in the breeze. I wanted to hear that it was nothing. But, the thing is, it was something and him telling me otherwise didn't change that ugly fact.

There seems to be a disconnect between what patients are told and the statistics. Not everyone survives breast cancer. Not everyone who dies from it was a de novo stage 4 case. Therefore, a subset of the people who die from breast cancer were people who were diagnosed with early stage disease. These women got a nasty shock that the reassurances of their early stage days did nothing to prevent. Don't doctors have a duty to be brave and to give women all the information in a kind but firm manner? Let's give early stage women more credit. They can handle it.

The Graceless Cancer Patient

The consultant leads me into a private room at the periphery of the outpatient day ward. I sit on the bed.

"We have the results of your CT scan and I'm afraid the news is not so good."

I hold my breath. I quickly decide to ask him if it's the worst case scenario, not believing it would be and thinking that we could then work back from that. "Is it cancer?" I blurt out. He hesitates and immediately, I am cast into panic-mode.

"You have a breast mass and we see some shadows on your spine".

I burst into tears at once and wail about the mammogram that I missed two and a half years prior. I know that this is bad, very bad. My symptoms had been so bad for so long that I know in my heart that this is what I will die of. I pace the room and push the consultant and registrar away when they ask to feel the lymph nodes in my left armpit. I alternately sit and stand and pace, rambling and hyperventilating, my mind racing. I am immediately truculent and angry. That anger will remain undiluted in me for the next month.

The above was my immediate reaction to being diagnosed with terminal breast cancer 29 months ago at the age of 31. I was not brave. I was not accepting. I was not stoic. I felt so different from all the terminal cancer patients I read about in blogs, who seemed to be so courageous, pragmatic and philosophical when they received their diagnoses. I did ask "Why me?". Many times. I did feel sorry for myself. I railed angrily against my diagnosis. Why could I not deal with this diagnosis with grace like others had done? It was like I now had something else to feel guilty about, as if there wasn't enough guilt already weighing down on me. I couldn't understand how others could be so zen about having their lives cut short so abruptly.

Since then, I have slowly become more accepting of my situation. Slowly. Back then, I thought I would never enjoy anything again. But, for anyone out there who is in this place now, I can quite confidently say that this too shall pass. To an extent. Life will never be the same, and I still cry daily. But I genuinely have plenty of moments where I do not think of cancer and where I can immerse myself fully in enjoying something - a film, a play, swimming in the sea. I've realised that everyone has their own way of getting to the point of acceptance. None of these different paths is wrong. Letting out all that emotion was what I needed. Feeling sad and angry at losing my future is nothing to be ashamed of. I am a curious person and it anguishes me still that I will miss out on so much.

So, if you are newly diagnosed and you feel that you are not handling it all with grace and stoicism, realise that you brain is doing whatever it needs to in order to normalise the situation as much as it can. Don't be distracted by how others are handling it. Ride it out.

This too shall pass.

Finding My Voice

Welcome to the Crazy Cat Cancer Lady blog! I am a 33 year old (as of July 2017) woman who is living with stage IV breast cancer. The purpose of this blog is to record my musings on living with a terminal illness. I'm not sure what form this will take yet hence the blog post's title. Hola, blogosphere! o/