A very self absorbed post indeed...

Who is this person plugged into tubes and pumps and ports? This blog is about to get existential.

I have detected a difference in myself lately, and I don't mean the outward scars I lamented in the previous post. My path is leading me into unknown territory and throwing up alternate versions of myself which I only notice when others reflect them back to me. I don't know if I have changed in the eyes of others, or I am simply evolving due to circumstances. I am not as I used to be, and I suppose I am trying to assimilate and acclimatise to who I am these days.

Last night I shared a ward with three other cancer patients. That's one new label I am still getting used to: cancer patient. I vehemently reject terms such as cancer sufferer, cancer victim etc. for obvious reasons. In fact I'm considering coining new terms such as cancer surfer, cancer disco dancer or cancer avenger, feel free to send me your suggestions. Anyway, this new identity of mine was reflected back to me from three other beds, even though I was the youngest by a margin of roughly 20 years. We were all receiving chemotherapy, I was the only one for whom it was the first time. Half of the room had lost its hair, I am fortunate in that my oncologist has assured me I will not lose mine. (In petulant rebellion, I have upped the ante on my haircuts and colours, throwing down the gauntlet and making the most of it in case he's wrong.) But on consideration, sitting there observing my roommates, perhaps I am wrong in trying to coin a new term for this identity, as the overall mood in this room was of patience (I have contemplated whether I misread resignation, and I am confident I did not). Those ladies took their chemicals with fortitude and forebearance; they looked like old hands, maneouvring their tubes and trolleys around to get to the loo, taking their meals with grace, using books, TV and visitors to help the time go past (I appeared to be the only one on an iPad :). They seemed to know that beating this beast is going to take time. So, patiently, I will accept my status as cancer patient and add it to my baggage.

According to Thoreau, the language of friendship is not words but meanings. Friends have a unique way of reflecting back to us our attitudes and values, as well as aspects of ourselves we like and dislike, like holding up a mirror. Friends who have lately cared and expressed support to me in both words and in meanings not only show their own inner strength, drawing on their own resources of confidence and assurance, but also boost mine. I can't believe I was surprised by this, but certainly the profound effect of verbal, texted and Facebook affirmations has been unexpected. Behind the words is the care, the intention and the wish for me to be sustained. I occasionally worry that the person being reflected back at me is one to be pitied - and I shudder. I try to see myself through others' eyes, and hope my that friends can see the strength they give me, so that pity is not required. I'm very much an encouragement junkie at the moment, as every message of support gives me another positive push along the road. Thankyou to all of you. It really matters.

To amplify the reflective effect, my family provides a house of mirrors without the distortion: reflecting parts of my former self as well as some newer versions. What they mostly reflect is courage - I am told I have it, but I have to get it from somewhere - which helps me to hold it together through the day-in, day-out aspects of my 'new' life. That is, after all, how it feels - one information pamphlet on cancer treatments referred to arriving at 'a new normal', which seems right as pretty much everything is different now. As I adjust to this new normal life, when my family looks at me it is with optimism, openness, overwhelming protectiveness and understanding. They want to know it all (except the gory bits, for some!) and travel the bumps along the way. Particularly I want to mention a niece who at sixteen shows such love, maturity and sensitivity that I am frequently overwhelmed, and feel so restored by her faith in me that I cannot but succeed. Through my family, my old bits merge and assimilate with the new through the positive image reflected back.

Every now and then though, I check my own mirror. I see self-pity some days; my last post was a bit of a whinge overall. I don't like the part of me that wallows every now and then. Sometimes I feel bad for being needy and seeking assurance from others that I'm handling things ok. I used to be much more self-assured and independent. The grief that sneaks up on me is also hard to cope with - I don't like to cry in front of others, even though they might need to see it. So I cry alone a bit, which is self-inflicted pain of a new kind. Perhaps I can change that. I know I'm lucky in lots of ways - I'm young enough to respond well and heal well after surgery, both tumours have been successfully removed and so on, but cancer is a tricky beast, and none of my doctors has made any promises beyond a 'good chance'. This is the circular self talk that goes on in my mind all the time - the down thoughts and the 'buck up, you're lucky' kind of stuff and then back to 'poor me'. It's a good thing I have this blog for sorting out the mess in my head. Glad you can share it.

But I have to say my husband's mirror is the one I like best. It is uncomplicated and I believe it to be honest. He sees my human frailty and doesn't let me get away with anything. He knows I'm strong and demands that I be more so. He knows I'm weak and wants me to cry. And he sees me as I am, even as I am changing. Thank God for him. Amen.



Apology: my blog intro promised I would try not to navel gaze and this post failed miserably. However, my blog is named 'Sweet Blog Therapy' so in the interests of it's therapeutic benefits, this post stands.

Getting even more real

Warning: This post contains factual descriptions of surgical scars and my interpretation of my oncologist's description of a medical device (I am not a medically trained person, merely reporting my own views using my limited knowledge). It's not an especially uplifting post either. If any of these disclaimers are likely to upset you, gross you out or depress you, I recommend you skip it.

I've spent the last few weeks recovering from liver surgery. The surgery removed a small secondary tumour related to the bowel cancer I was diagnosed with previously. The liver surgery was timed to take place four weeks after the initial surgery I had to remove the serious-sized tumour in my colon. Yuck. I guess there's no 'sexy' cancer but surely bowel cancer is the least sexy of them all.

Throughout and prior to the cancer diagnosis and treatments I have battled Meniere's Disease, an inner ear affliction which has effectively taken away my balance and coordination since July. It makes me dizzy and nauseous, gives me a ringing sensation in my left ear and at times has made me partially deaf. I have had difficulty getting around on my own two feet, and driving has been out of the question in the interests of the safety of other motorists. Here's a tip: if you ever get Meniere's Disease, don't have liver surgery as well. Every lurch and stagger exacerbates the wound pain and your stomach muscles which have never felt quite so wretched.

Anyway, over the past few days I have felt better than I have in over six months. The first sign of improvement that was really obvious to me was seeing the dirty bathroom, getting annoyed at it and then cleaning it. I haven't been able to clean any room of the house in months. It was such a satisfying feeling. The second hopeful sign was getting around without my walking stick for a whole day. It felt good to walk without having to hang onto the walls and furniture. Today I cleaned the entire kitchen and lounge room, the way I like it. Husbands are wonderful, and mine has done an extraordinary job over the journey of taking care of every domestic duty including cooking for me, but sometimes you just want something clean the way you would clean it, and that can only happen if you actually do it yourself. And who knew it could be so liberating! Perhaps it's just that illusion of control over something in your life, even if it is fleeting.

All of this is an excellent distraction from what lies ahead, which if you have read previous posts, I usually prefer not to dwell on. However, one has to face facts at some point, and I guess after two lots of surgery this is where my experience with cancer begins to get even more real. Tomorrow I am undergoing a procedure to insert a chemotherapy port into my chest.

By itself this doesn't seem that big a deal. A gadget the size of three ten-cent pieces stacked on top of each other will be inserted underneath my skin, and attached to a vein close to my heart. Next week chemotherapy drugs will be injected through the skin into the device, which will stay in place for the duration of my treatment (six months). I will have a pump attached to it that I will carry with me for 48 hours every fortnight. The insertion of the port enables my treating doctors and nurses to avoid using veins in my arms which are smaller and can become irritated from the drugs.

So, it all seems pretty straightforward. Until you're the one walking (and sometimes staggering) around with the train wreck of a torso that I have right now. Let's backtrack: surgery to remove my colon and its fabulous tumour left residual evidence including a horizontal scar 8cm long on my lower pelvis and an ileostomy (a bag attached to an opening made in my lower abdomen to remove waste). There are a couple of little laparoscopy scars too, in the interests of full disclosure, but these are very minor. In addition, the liver surgery left me with a vertical scar stretching 11cm from the base of my breast bone.

Perhaps this doesn't adequately explain it. Cancer has already left its mark on me, without permission, and without me being ready for it. The body I used to have is gone forever, and I'm having to grieve for it. I didn't value it at all. I didn't dislike my body, it had its moments of being quite cute in my eyes, but I certainly didn't appreciate it the way I should have. Just having skin without scars was beautiful, which is something I understand now that I no longer have it. Now, I dress to cover up the multitude of sins that is my disaster area underneath, and try to show the world a 'normal' facade.

This explains it better: "Cancer doesn't just ravage our insides, it frequently does a bang-up job maiming our exteriors. It takes breasts and limbs and flesh as payment for survival, then leaves us to quietly mourn our missing parts while we try to reassure the world that we're not defective freaks." (See reference below)

This chemo port is going to mess with my mind and attitude towards my body all over again. After the colon surgery I had to buy clothes that would be blousy around the waist to hide the ileostomy. Then after liver surgery I couldn't wear a bra, and had to choose draped, loose clothes in order to feel that my modesty was being maintained. The location of this port is going to have me reinvent the way I dress all over again. Is this the worst thing that can happen to me? No. But it is something that comes between you and interacting with the world the way you used to, the way you want to, and it's another thing that cancer takes away from you.

And that's before I even get the chemicals on board. Stay tuned. Reference: Mary Elizabeth Williams, "Ginger, interrupted". The Age Sunday Life Magazine, 16 January 2011. p19.

Right Now

I started my year on Facebook (which is a whole other story) with the following quote:
What lies behind us and what lies before us are tiny matters compared to what lies within us. Ralph Waldo Emerson

It was in a book of inspiration given to me by Maree, and it was one of those quotes that you read and process and you feel you're already there, almost like deja vu for the soul. Two months ago I had to block out what lay behind me, and shield myelf from what lay ahead, in order to maintain a sense of sanity. Sometimes you have to learn life lessons from repetition, and the germ of this lesson really began after I miscarried at 11 weeks in my first and hardwon pregnancy.

The loss of a pregnancy has many layers, which I won't go into here. But picking up afterwards and examining my biggest anxieties and sense of grief, I found that my biggest fears were failing to get pregnant again, and being successful in getting pregnant and miscarrying again. Neither of those things are in my control and both are potential futures that don't exist at the present time. Accompanying my future-focused anxieties were fears about what went wrong - could I have done anything to prevent the miscarriage? I am far too rational a person to blame myself for the mysteries of pregnancy for long - if the doctors can't tell me why, then I am not going to be able to divine the reasons why these things happen. However the lesson I learned was that the past is gone - it cannot be changed. And the future is yet to be, it cannot be known, and is not always within our control.

Handy lesson that one, when you find out you have cancer. When did the tumour start growing? Was it to blame for other health issues? Was it there during pregnancy? Why didn't it show up on earlier tests? How quickly did it grow? All these questions are natural reactions, trying to find the root of the issues, and something to blame. Stopping yourself from asking the questions is one thing, preventing others from doing so is a different matter! Here are the really good questions though: what is your prognosis? Will you be able to overcome the cancer? Will it come back? In short, are you going to die? My answer to that is that we're all going to die. We just don't know when and from what cause. Maybe I know my cause of death. Maybe I don't. I only know that we all have today, and we can't always be sure of that.

Which brings me back to Emerson, and the New Year, which is always a time for reflecting on the past and making plans for the future. Both utterly futile, unless you want to learn your lessons from the past and then leave it there - in the past. Or resolve to be better and do better in the future, without relying too much on events or circumstances you have no control over. The only thing we can count on is the present: who we are right now, what we know right now, what we're capable of right now, what we have to give right now, who we care about, right now. These are the things which lie within us - not in the past, and not in the uncertain future. Right now.