Welcome to Cancerland

A year ago today I suspected all was not as well as it should be with my health. My suspicions proved more accurate than I imagined. Life has been an endless stream of hospital appointments, blood draws, infusions, procedures, drugs, side effects and more drugs ever since. The experience has changed my life beyond imagination.

I’d been wondering about my health for a while. I was permanently tired no matter how much sleep I managed to get. The tiredness went well beyond the levels I was used to with ongoing pernicious anaemia and it was unexplainable. By the end of a normal working day I had no energy for anything else. During weekends, a time when I’d usually make use of every second, I wanted to sleep and stay sleeping for hours on end. I never sleep during the day yet all of a sudden sleep was the only thing I craved. My skin had become a constant problem too. I thought at first that the constitution of my washing powder, cosmetics or soap must have changed. Over a few months my skin was increasingly dry and prone to eczema no matter how well I cared for it or what products I used.  My hair became dry and fell out more than usual.    Viruses became my worst nightmare. I caught colds I couldn’t shake. Simple bugs that everyone else shrugged off in a few days became month-long sagas for me to the point where I dreaded being in the company of anyone remotely contagious because I’d find it so much harder to recover. I picked up swine flu and was very sick for weeks on end.

On reflection I think all these bizarre anomalies were symptomatic of the larger, more deadly changes taking place unseen inside my body. They were the outward signals that balance and harmony no longer existed within the system. They were probably signs that my already temperamental immune system wasn’t acting as well as usual. Unsurprising in hindsight since there was a serial killer in my midst and it was hunting me down at a very rapid pace.

I recall my thoughts were polarised. Part of me said stop being ridiculous, it’s all coincidental and you’re over-thinking it. That part of me didn’t want to believe I was at least the fifth generation of women in my family to develop aggressive breast cancer between the ages of 39 and 43. I say at least because our records are sketchy, none of these women survived beyond 50 in spite of various forms of treatment. Another part of me suspected history might be repeating itself. Something malevolent, highly defective and age or hormone related was waking from its slumber to stealthily consume my body. I wasn’t over-thinking it and the serial killer wasn’t just stalking me, it was actively attempting to murder me from within.

So much has happened since this time last year. Life turned upside down, inside out, was spliced and diced beyond recognition. Major surgery followed by the chemical equivalent of nuclear warfare means that every fast growing cell was terminated or stalled on a three weekly basis for 5 months. Every chemo session is clearly visible in unexpected places like my fingernails. There are no useable veins in my left arm and my right side isn’t much better so I’ve come to dread basic medical procedures like cannulation because its painful, stressful and far from straightforward. More than three attempts and there’s a good chance I’ll go into shutdown; my blood pressure drops so low it scares the nursing staff half witless.

I no longer know the body I live in, it doesn’t look or feel like me. Its more akin to some dodgy rented accommodation and no matter how well I treat it I’ll never be able to trust it. For ever more I have to maintain a watchful vigilance for any changes, even tiny ones, because they could signal the serial killers resurgence. Thats an especially high risk within the next two years but the residual risk continues forever. No days off for holidays or Christmas once you step into Cancerland. Simple tasks – lifting something heavy, reaching up to the top shelf, walking more than a mile, opening jars – are difficult now. These are everyday things that I never gave a thought to a year ago. Today I have to consider how to do them, or just not do them at all. It’s incredibly frustrating and no-one can tell me if or when these things will improve or how much they’ll improve by. That’s frustrating too.

In some ways it’s fortunate that I’ve always been a spontaneous rather than create huge life plans in advance kind of person. Even the few vague plans I held on to – things I wanted to do, changes I wanted to make, places I hoped to see – have gone awry or away.  They’ve vanished to be replaced with plans for two further major surgeries, possible tamoxifen for up to 10 years and the restart of herceptin if its side-effects can be brought into check sometime soon. Getting back to anything scarcely resembling life before diagnosis feels a long way off, some of it has disappeared and will never return. A new abnormal has taken its place and whilst I’m not crazy about it, it’s all I’ve got.

When you find out you have breast cancer and the consultant says “ok, as we suspected its cancer but its treatable” you have no idea that every ounce of normality will be squeezed out of your life. You might be aware of certain treatments and their associated side effects but nothing adequately prepares you for them. Everyone reacts differently, we all get our own personal version of hell on Earth just like no two cancers are exactly the same. All you can do is go with it and wait for the effects to pass. You get to thinking OMG this sucks but you have no idea how long it’s going to suck for, no-one can make any promises. For some it’s well over a year, pushing at least two. For others it’s the rest of their lives because the cancer has already reached a stage where holding it up is the only option, eventually no amount of drugs, therapies or faith will prevent it taking over. Death will ensue.

While you’re busily dealing with the serial killer in your midst the lives of those around you change beyond recognition too. There can be fear, disbelief, denial, anger, sadness, you name it there’s probably a (negative) emotion family and friends have been through. When relationships go off the rails – and is it any surprise when extreme circumstances push people beyond their limits? – it seems to be another signal for the serial killer to sharpen its knives. “By analyzing data collected between 1973 and 2004 for 3.79 million cancer patients, researchers found that, 10 years after diagnosis, survival rates for people who were separated at the time of diagnosis was just 64% of that for married patients. A decade after a cancer diagnosis, the survival rate among married patients was 57.5%, while, among separated patients, it was just 36.8%. The dramatic difference led researchers to believe that the severe emotional toll of separation might effectively cripple patients’ immune systems.” (http://healthland.time.com/2009/08/24/love-life-can-influence-cancer-survival-rates/#ixzz2SgguwVHhhttp://healthland.time.com/2009/08/24/love-life-can-influence-cancer-survival-rates/).

Irrespective of partnership status, the importance of a strong social network is now coming to light yet months or years of medical interventions, a complete lifestyle shake-up, loss of confidence and enforced isolation during some treatment regimes can all make the basic fabric of  life very difficult to sustain. Social networks are, it would seem, another predictor of outcome. (http://www.huffingtonpost.com/2012/11/13/breast-cancer-study-strong-social-ties-improve-survival_n_2122697.html)

If someone had told me that sometime in my late thirties a genetic malfunction or signalling pathway error would result in the discovery of aggressive breast cancer aged 42 would I have lived my life differently thus far? The simple answer is yes.

  • Instead of accepting the popular belief that few cancers are genetic and my abominable family history was all coincidence I’d have insisted on the mastectomy I asked about and was persuaded against in 1997.
  • As selfish as it may sound I’d have spent more time taking care of myself instead of working myself to a cinder in a number of thankless jobs for far too many impossible customers.
  • I’d have stayed at home more rather than working relentlessly while my son was growing up simply because I felt compelled to provide for us and fell into the role of mother, sole wage earner and household doer of all things great and small for the past 21 years.
  • I’d have thought more carefully about who to take care of, where my support was genuinely valued and whether some reciprocal care might come in return should I need it. Sometimes even the strongest and most independent need a little help.

Hindsight. A wonderful thing but always too late. Do I regret my previous choices? No, not really. Theres no point crying over spilt milk as the saying goes even if, as per my case, the spillage is big as the Atlantic Ocean.

Has the way I think about my life and what I do with rest of it changed? Yes, most definitely.

While I’d like to say the changes are all for the better, I’m not sure that’s true. Being as giving as possible, worrying more about others than myself, supporting them before securing my own well being – these all feel like positive traits to me. Yet I’m having to rethink them, tone them down to create space to consider myself and my own needs more. Is this going to make me a bad or selfish person? I don’t know.

A year ago I’d have chastised myself for these changes; I’d have cared if other people thought I was bad or selfish. Today I don’t because I’m the one fighting for my life, it’s taking every resource at my disposal and that may not prove to be enough. Today my life is full of ghosts. Whispers of  places I used to go, people I used to see, things I used to enjoy but can no longer do. As with all ghost there’s a melancholy that goes along with them because they hint of a life more ordinary, less complicated and free from the shadow of a serial killer named cancer. Today my life is the place where physical endurance is only the tip of the iceberg. Fasten your seat-belts because relentless turbulence is the only thing that’s guaranteed. By the way,  Welcome to Cancerland.

cancer 2011

cancer 2011 (Photo credit: mike r baker)