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)

Advertisements

13 thoughts on “Welcome to Cancerland

  1. Re: the symptoms of cancer prior to diagnosis issue you mention, and others have commented about–too true. I remember complaining that summer before diagnosis that I felt “off”. I never dreamed it would be cancer, because even with maternal relatives having breast cancer, no one in my family ever got it so young, I get to be the first one for that (grimace). I couldn’t really point to many concrete symptoms, maybe some stuff I attributed to IBS, and just being overworked. But I thought going to the doctor with a complaint of “I feel ‘off'” would just get me nowhere–and a false negative mammogram kind of proves that. Seems that I, and my doctors could not even find my cancer when it was staring me in the face.

    Like

    • Our situations sound very similar. I had a negative mammogram result in January and found the anomaly completely by chance in May. Even the mammo they gave me in May didn’t detect it when there was definitely something going on in there and it showed up clearly on ultrasound. I know for sure that I’ll trust my instincts about something being “wrong” with my body in future, even if the medics think I’m going overboard. If I hadn’t flagged the barely noticeable indentation and left it until my next mammo I’m fairly certain I’d have been facing a stage 4 diagnosis from the outset. Really doesn’t bare thinking about.

      Like

  2. Hi Tracy… I’m four years from initial stage III diagnosis and my nails are still wrong, my one arm still causes me grief… I don’t believe we are ever prepared for just how invasive this serial killer is – down to the smallest detail of life as we knew it. I was most intrigued by your descriptions of declining health prior to your diagnosis, I had signs and symptoms over a year prior to mine, but was told that there are no symptoms… yet another mind game we seem forced to play.

    Giving to yourself doesn’t make you a bad person of course, it’s so necessary to do that, as hard as it is for you. I understand how you feel, I’m still struggling with it myself – now at my final stage the days fly by and I realize I haven’t gotten in everything I feel I should be doing, no matter how futile that may be. There is always something that ‘needs’ to be done, apart from our own needs, right? We are so hard on ourselves.

    Your links and statistics about survival, relationship and social networking are quite interesting, thank you for pointing them out. I would have lived my life differently as well… but as you say, hindsight is a wonderful thing. My thoughts are with you sweetie… many hugs sent your way. xoxo

    Like

    • Hi Carolyn, when I came to your blog my first though was ‘another brilliant woman who with so much to offer who is up against impossible odds, this makes no sense.’ I suppose it is never going to make sense to us, we just have to deal with whatever gets thrown our way. I do believe my unreliable health prior to diagnosis was a sign that something inside was going wrong, I don’t believe those changes were simply random. After surgery and during chemo most of my skin problems cleared up even though chemo is meant to cause dry skin, I didn’t get any viruses (previously I was never without one) and although the chemo was hard going, my body seemed to be in better shape overall. None of that made any sense either. I really wish I could wave a magic wand, take cancer out of our lives and create the space for us to live the way hindsight would’ve wanted. I can’t do that but I do send lots of love and friendship to you always xoxox

      Like

  3. Thanks Maurice for sharing this post.I like Maurice and most people was deeply moved by this post.It really hits home as My mom has been battling breast cancer for over two years now.I wish you all the best.Its a very dicfficult journey and does change lives and how we look at our lives drastically.My thoughts and prayers are with you.

    Like

    • Thank you for coming by Roxanne. My Mum had breast cancer too so I saw what it did to our lives back then and am getting another chance to deal with it through my own situation now. It is probably the biggest challenge anyone has to face, whether they’re the patient or the carers and it’s very tough on everyone. Sending love and strength for you and your Mom, I’ll be thinking of you both

      Like

  4. I too, like Maurice, have read this more than once. I am deeply moved by this very thought provoking post. Like Maurice, at present I am lost for words. In the mean time, I send my love, my support, and lots and lots of {{{hugs}}}. Dad xxx

    Like

    • Thank you Dad. I think there is a side of all this cancer nonsense that rarely gets talked about. The focus, quite rightly, is on tackling the disease. But the disease doesn’t just cause lumps and invade surrounding tissues, it targets the psyche and throws people off balance. I think there is a whole world associated with cancer that warrants more investigation and the provision of appropriate support. I do not know how people cope with this – if I hadn’t been brought up to be determined and persevering I’m not sure I’d have got this far xxx

      Like

  5. As we get older we, very unfortunately I suppose (but perhaps not), have increasing opportunities to learn of that thing we call the indomitable human spirit. I think I have been by FEC-THis before and have opportunity to visit once more as a result of the reblogging of this post. Like Maurice I usually take time to respond to posts to allow myself time to digest as well as time to formulate a reasoned response.This time, also like Maurice, I will simply say what has first come to mind. And, that is that I simply do not understand how folks who face issues such as Cancer do it. I cannot fathom how they muster the emotional energy to face and to fight (vigorously) the disease. I have heard lots of folks say that one rises to the occasion. Perhaps. But I cannot see that sort of singular strength in myself. My cousin, too, has been afflicted with Cancer. I talk to him each week. After each one of our conversations I have the same thought come to mind, and that is … how is he doing this? How does he keep going in the face of such odds? How is this possible? Truth be told I get upset at the thought of having blood drawn at a routine physical! I’m not sure what else I can say other than the strength you have demonstrated is (literally and not in the vernacular) awesome. Truly. D

    Like

    • Thank you for coming by D, for thinking on this issue and sharing your perspective. Perhaps we are hard-wired to survive and that’s what drives us forward in spite of the challenges we have to face. I have wondered what happens if we step down from the fight, whether that changes the outcome. I have never come across anyone who decided to step down so have no way of knowing the answer. I am sorry your cousin is faced with the spectre of cancer too, it creeps into so many peoples lives these days and shakes us to the core. I wish you both indomitable spirit for the road ahead.

      Like

  6. There are some blogs that I routinely take a while before responding to. There a relation between the amount of time I put into a reply and the power I felt from the post. Yours fall into this category. This one more than most. I read it several hours ago while waiting at the Orthodontist’s office for Three and Daughter. I read it again just a few minutes ago.
    I also noted that, for a change, nobody had responded. No wonder. The power and raw emotion from this post are immense, leaving the readers—not just me—speechless. So, what to say?
    As a typical male I sense foremost that something is broken. My instinct is therefore to try and fix it. How foolish! I’m not a healer and besides, what can one person do? …just another drop in that ocean you already mentioned. I can say words of support. But, again, what is there to say? “Chin up! It’s only a disease. Everything will be alright.” No, that won’t do, not for either of us. Maybe I could send positive wishes. While I’m a firm believer in medical science and a staunch dis-believer in the supernatural and in the many junk sciences we hear about (you know, the ones that take a smattering from the edges of psychology, throw in a little flawed reasoning and then smatter about “serotonin” and “oxytocin” as isif I know what you’re talking about and VOILA—sweet nothings from junk science) I do believe it’s reasonable to assume that a positive disposition has a causal connection with healing. But, then again, you’re already there, so that’s a waste of our time.
    So…here’s what I will do. I will honour your writing by reading it one more time and by passing it along to some others who may benefit from reading it. You know you have my best wishes anyway.
    As a final shot I will say that if cancer treatments packed the same whallop that this post did, the hydra would have a few less heads to sprout :>)

    Like

    • Thank you for thinking about me Maurice, for seeing something is broken and resisting the urge to find the quick solution that fixes it. My male friends tend to go straight into solution mode too – it think its one of the great strengths of men as it does solve many problems without too much trouble. This cancer thing is in a class of its own though and some of the situations are so complicated that even my oncologist gets vexed. Today he shook his head and said sometimes we just have to trust we’ve done enough to fix the physical issues and let time ease everything else. I’m with you on the correlation between positive thinking and health, optimists live longer than pessimists. Sometimes its a challenge to remain optimistic and upbeat when so much needs fixing but you know I will keep going and hope I’m chopping off those hydra heads faster than ever.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s