Grief - Living With It and Learning From It

It's been a turbulent time for some of my friends lately dealing with illness and grief. It has me thinking of all the things we potentially lose throughout our lives and what we do with our grief.

The obvious place for me to start this discussion is with the loss of a parent, but it could just as well be a grandparent, a sibling or a child. I was 20 when my father died, cancer took him from us when he was just 53 years young. For me that grief hasn't gone away even though nearly 30 years have passed. My grief has changed and I've learned to live with it but it's still there. There are times when I glance at a stranger on the street and something about them reminds me of Dad. Times when I'm talking to my son and wishing like crazy that Dad was here to share his wisdom and humour. And every day I miss having him around. I still feel short changed because he's not here with us.

Looking back there are so many other things I've also lost over the years and for which I still grieve.

There was my first serious crush, I thought I'd never get over him. My high school friends will laugh thinking back on those times but my grief was real and overwhelming at the time. I don't think you ever really get over your first teenage crush and even now I still think of him from time to time but they are happy thoughts. 

My first love was a rollercoaster ride without a doubt ... a ride that spanned a period of maybe 5 years.  It was an on again off again relationship, more off than on, but each time the grief was harder to manage. To deal with that grief I would throw myself into anything new to the point of obsession. But I survived it and over the years I dealt with the grief and learned some important things about myself.  One of those lessons was that it's not always about me! Yep, the on again, off again nature of that relationship had everything to do with his maturity and nothing to do with my worth. I wish I'd learned that one years earlier!

During my teens I lost my innocence when I experienced both sexual assault and then much later domestic violence in my first live-in relationship. That grief took more than 20 years to deal with. It changed me and set me up for any number of negative experiences as an adult. I lost the ability to trust for many years as a result and I set a particularly low value on myself.  I was well into my 40s when I finally understood and believed that I was worthy of love and deserved better. Once I achieved that understanding I was able to release the grief around those situations.

My first marriage ended in divorce after just a year. In some ways that grief was easier to cope with because I felt so much anger at the time. I honestly believe that it's not possible to feel more than one truly extreme emotion at a time. So what I did to deal with that grief was EVERYTHING. I threw myself into so many "bad" or unwise situations that the grief was buried. I'm not sure I fully dealt with that grief until well into my second (current) marriage.

At the end of 2011 came my cancer diagnosis and a lengthy period of intensive treatment. I've spoken about this time before and probably will again in the future but here, just now, I only want to discuss the grief associated with my whole cancer journey. It might surprise you to know that the biggest source of grief was not the physical scars, or the loss of my hair. It wasn't grief for loss of physical ability or feeling well. It wasn't even the grief over friends who disappeared from my life because they couldn't deal with either my illness or how I tried to cope with it. The greatest grief I experienced during, and after, my cancer treatment was/is the loss of feeling invulnerable. Until my diagnosis I had never considered my mortality, even having been beside my dad as he fought, and lost, his own battle. But suddenly I had a life threatening illness and no guarantees that I would survive it. Even after all I went through in my teens and early 20s I still had a degree of innocence until the Big C struck. The most difficult part of surviving cancer for me has been dealing with my own mortality. And though I have learned to keep it in check for the most part I still grieve for the time when I could look years ahead into my future and make plans with no question marks.

If I'm being totally honest with myself, and with you, I still grieve the loss of innocence through each stage of my life but that grief has now morphed into a determination to make every day count. I make a conscious effort to celebrate every achievement, and every birthday, to hold my friends and family as close as I can and show them how much they mean to me and to NOT put things off for another day. To not wait for better weather, not wait until we can better afford something, not wait until some other criteria is met. I've turned that grief into purpose and motivation and gratitude.

Whatever grief you are experiencing, please don't let it take away your purpose, your joy or your future. Use it to fuel your passion and motivate you to do things, learn from it and grow!

Connie Johnson said it perfectly: "Now is awesome".

Glass half nothing.

For the past 7 years I haven't looked at my glass as either half empty or half full. I've just been truly grateful to have a glass at all.  Cancer did it's best to shatter my glass and grind the pieces into oblivion.  I can honestly say that most days, the overwhelming majority of days, I'm just so grateful to be alive that I don't dwell on my health struggles. But rarely, on days like today, I question The Universe and all it has thrown at me.

Cancer treatments vanquished the evil that tried to take over my body but they left their henchmen behind  to continually collect payment for it.  Some days the payment involves chronic pain in my muscles and joints. Some days it's broken bones seemingly out of the blue. Anxiety attacks, depression, inexplicable anger, nerve pain flares and painful scars.

Today it's the fatigue. Overwhelming and suddenly extreme fatigue. I've lived with fatigue for the past 7 years and in a way I've become accustomed to it. But this morning when I got out of bed I was already exhausted. And tonight I am so exhausted that I can't control the tears. My muscles are shaking and everything hurts. Every single cell in my body is crying out for a break.

Now I am in no way a negative person and I mostly don't feel sorry for myself.  But tonight I need to give myself permission to be angry at the hand I've been dealt. Tonight I'm asking The Universe "why me?"  and "when can I expect to catch a break?". And I'm not going to feel guilty for thinking/feeling this way either. I've earned a good cry and maybe even a good scream. Hopefully it'll be cathartic and perhaps tomorrow I'll be able to pick myself up and continue to be thankful that I still have a glass at all.

A Little Bit From Somewhere In The Book

She sat in the busy waiting room feeling incredibly alone. Her mind kept revisiting the path she had traveled to reach this moment in her life. Trying not to think of what the next half hour might hold she preferred to look back. Lost in her thoughts the time passed quickly and she didn’t hear as her name was called.

Life was looking really good. After a turbulent ten years almost ending in divorce, Sue and her husband Paul had been working hard on rebuilding their marriage and it was paying off big time. Not only were they finally starting to communicate effectively with each other, along the way they had discovered that they actually really liked each other as people and were building an awesome friendship within their marriage.

Paul and Sue were both career I.T. professionals. In fact that was how they had met all those years ago, working together on a government project. Working in I.T. was the last obvious cause of Sue’s recurring anxiety attacks. She only needed anxiety medication on the days that she traveled into the office with Paul. They soon agreed that a career in I.T. was no longer a positive influence on her health and therefore the health of the entire family. So with that, after more than 24 years in the industry, Sue had resigned.  She was ready to focus all of her energy on building her passion, her paper crafting hobby, into a home business. It was just a matter of days since she had become officially unemployed.

Sitting alone in the crowded waiting room Sue was thinking ahead too. There was so much to look forward to in the next few years. Not only was their little family back together and becoming happier and stronger than ever, but soon it would increase in size by one member. The cutest, tiny puppy would soon become part of their family. At 8 years old Alex had never had a pet at home, other than fish that is, and her son was radiating excitement like a supernova. They had first met the litter of pups when they were just 2 weeks old and had visited twice more since then, when the puppies were 4 and 6 weeks old. It really had been love at first sight with the curly little girl choosing them every time. Each time they placed her back with her litter she made her way over again and into a lap. This weekend they were going shopping for a bed, bowl, collar and toys for the little girl who had already wormed her way firmly into the hearts of all family members.

There was also Sue’s paper crafting hobby. She loved everything about it from the buying of supplies to dreaming up and creating projects for classes as well as finished items for customers. Nothing spoke of a day well spent better than ink stains on fingers and glitter specks on your face!  The lovely people she had met through her paper crafting hobby all shared her passion for paper and ink, glitter and glue and became like extended family to her. Their friendship and support gave her the warm fuzzies in a really big way, they were like minds with hearts of gold.

Glancing up at the clock on the wall she sighed and wondered if she’d get back in time to pick Alex up from school. Maybe she should send a message to Laura and ask her to take him home with her after school. Laura’s son was Alex’s best friend at school and they lived just a block from the school. Yes, she should send that message before she went in to the GPs office.

Message sent she got lost once more in thoughts of how she had arrived at this moment in her life. Her mind went back to the weekend which had been busy but reasonably uneventful. They had gone out for a lovely family lunch at a local winery and then caught up on some long overdue jobs around the house. One of those jobs was moving some furniture between the 2 spare bedrooms. The larger room was to become her crafting space and though she probably shouldn't have been lifting the heavy pieces of furniture with Paul, she really wanted to move into her space. Somehow Sue had managed to hit her right breast and the front of her shoulder on a solid timber bookshelf. It hurt like holy hell when it happened but she really didn't give it much thought for the rest of the weekend. When it was still very painful on Monday morning it did start to worry her a little.

Sue had been up early as was always the case on weekdays. Even though she no longer had to prepare herself for a day in the office there was still Alex to get ready for school and breakfasts to prepare. As soon as Paul had left for work she had walked Alex up to school and then headed down to the oval for a walk with her friend Donna. Leisurely laps of the grassy oval and much conversation, sunshine and fresh air, friendship and freedom, nothing could dampen the happiness of the day. They had chatted constantly as they walked and Sue had mentioned her injury and that it was still painful. Donna had volunteered the name of her female GP as Sue was absolutely not prepared to go to her young, good looking, male GP and bare all to have a sore spot on her breast checked out. Silly perhaps, but having preferred female GPs all her life it felt more comfortable. After the walk she had gone home and phoned, expecting a lengthy wait for an appointment, but was pleasantly surprised that they had a cancellation. There was an appointment available the next morning so she had booked herself in.

Tuesday morning had arrived and Sue cheerfully headed off to meet the new female GP.  Thinking back she wasn’t sure exactly what she had been expecting but it wasn't what actually happened on the day. Having showed the doctor the sore spot on her breast, which coincided with what she had assumed was a small patch of eczema on her skin, she found herself being referred.  At the ripe old age of 42 she was told to book in for her first ever mammogram and possibly an ultrasound to follow. Interesting how the human mind works but somehow she hadn’t been concerned at all. Not concerned at being referred for a mammogram, not concerned that the referral was to a private radiology clinic in order skip waiting lists. It just hadn't seemed unusual or concerning. When she got home Sue had phoned the clinic and was told they couldn't fit bookings for both together but could do the mammogram on its own the next day.  Of course she had taken the booking thinking she could always go back the following week for the ultrasound if it was required.

On Wednesday Paul had taken the afternoon off work so that he could drive her to the radiology clinic (even though she had been more than positive there was nothing to worry about) and off they had gone, oblivious to what lay ahead. After checking in, Paul was left sitting in the main waiting room while Sue was taken through to change into a not very glamorous hospital gown. Once changed, she had waited alone in a different area until called through for the scan. She shivered slightly recalling the whole excruciating experience.  After the scans were finished and the doctor had looked them over she’d been told not to get dressed but to sit in the little waiting area again while they tried to squeeze her in for an ultrasound between patients. At this point warning bells would have started ringing wouldn’t they? Nerves would kick in? Nope. Nada. Sue thought they were being very nice trying saving her the trouble of coming back the following week. It never entered her mind that something was wrong, very, very wrong. Denial is a safe and happy place to live.

 

Ultrasound over she had been told to change out of the lovely hospital gown, pay the account and then wait in the main area for the films to be printed. As they waited in line to pay a nurse had come over with the films and told them not to worry about the account as it would be bulk billed.  What? Was bulk billing even done in a private clinic? (Sue had later discovered this is often done for oncology patients). The nurse had said to go back to the GP the following day for the results. Sue had laughed. Local GPs usually had a wait of at least a week for appointments, but apparently the radiology doctor had already spoken to Sue’s new GP and she would definitely see her tomorrow. She had thought that a bit strange, interesting even, but there were still no alarm bells ringing. Denial is a crazy place to be.

And so here she was sitting in the waiting room alone. Paul had offered to come with her, so had her best friend Kayla, but she’d decided there was no need for hand holding or moral support, she wasn't sick. So she had come here alone. In a room full of people she was feeling very much alone. She didn’t hear when her GP appeared at the entrance to the waiting room and called her name. She looked up as a shadow fell across her face, “Sue, you can come through now”, her GP was smiling down at her kindly.

Finally they were sitting together in a closed office and the doctor started talking very gently. At first Sue didn't really hear what was being said, didn't comprehend the words. But looking up into the doctor’s face as she spoke, Sue started to hear through the haze of denial. When she saw the tears glistening in the doctor’s eyes, suddenly she could hear her words and understand them:

"I'm so sorry Sue, you have breast cancer".

What Makes It A Good Day?

I am not a lazy person, I never have been. It's not in my nature to be still for long. My preference has always been to keep moving, doing and achieving.  Constantly writing page long lists and furiously crossing items off one after another after another.  The more items crossed off, the better the day. My natural inclination is to be busy and to fill every moment in a day until it's time to sleep. And having moved, done and achieved a lot then to sleep soundly before waking up the next morning ready to do it all again. That was what a good day looked like to me.

But that was then. That was before anxiety and depression. Before chronic insomnia. That was before the ongoing fall-out from intensive cancer treatment. Before adrenal fatigue and chronic pain. That was before.

Now a good day looks very different to me. A good day is one that doesn't involve taking pain medication simply to be able to get out of bed. On a good day I feed my family and my animals, get my son to and from the school bus and maybe cross one additional thing off my list. That list, that page of writing, covers a span of a week or more now, not just a single day.  Now a good day is one without tears of anger or frustration and without anxiety.

I understand that it could be easy for someone else to see my stillness, my lack of activity or achievement, and assume that I'm a lazy person. Even those closest to me don't see the real struggle, because I always try to stay positive and keep smiling. I don't complain often, at least I try my best not to, because I know how lucky I am to still be here, sleepless nights and chronic pain aside. It's a huge mental shift to go from "Wonder Woman" constantly achieving to "Mrs Average"(or is that "Mrs Below Average"?) just getting through the day. To go from over-achiever to barely-achiever. 

The best piece of advice I was given when I started my cancer journey was to "learn to embrace the new you". Simple huh? It really is great advice and although it sounds simple it's actually incredibly difficult to do. What it comes down to, I think, is finding peace with those limitations I can't remove. It's about accepting that I can no longer do all the things I was used to doing myself and most importantly accepting help from others so those things can still get done even if not by me. It is incredibly difficult to do but very slowly I am beginning to understand my limitations. I think I get better at it every year. 

I'm not a lazy person. What I am is a survivor finding and trying to accept "the new me". Finding isn't so hard, it's accepting that's still a work in progress.

The Silence of the Dying

Before I start I just want to emphasise that this post is NOT about me. Sure I use myself and my experiences to highlight some things but this post is an attempt to bring more honesty to relationships around chronic/terminal illness.

One of my favourite Australian authors, Sara Douglass, died from cancer in 2011 just a month before I started my cancer journey. Yesterday I came across a piece she wrote about the pressure society puts on those who are terminally or chronically ill to make the best of it, think positive, keep smiling and other such platitudes. It's an issue I've wrestled with since my journey began. If you're interested in Sara's piece you can find it at 
http://www.saradouglassworlds.com/the-silence-of-the-dying/ 
I hope you will take the time to read it.

There is a lot in the discussion that rings true to me. A line which really jumps out is "...  too often, it is up to the sick and the dying to comfort the well and the un-dying". YES!  It sounds bizarre but I've been there. I am still there to some degree. 

I spent the almost 12 months of my cancer treatment with a fake smile pretty much glued in place. I let that smile slip once and it resulted in being unfriended and blocked on Facebook by a "friend" (one of my inner circle at the time). Nobody really wants to know the truth about how horrific cancer and it's treatment is. Even my oncologist said to me on more than one occasion "let me worry about the cancer, just get on with your life". As if I could forget what was happening and go back to normal. 

And now that it seems as though I might be beating the awful odds I was initially given I'm not allowed to feel anxious anymore. Not allowed to be scared about the future. The reality is that the Big C could strike again at any time. Every six months when I stress about the upcoming scans and bloods I'm told not to worry, that everything will be okay, over and over. It makes me want to scream. Almost nobody wants to sit with me, even briefly, in my place of anxiety and fear. Because that's uncomfortable. But that's what I need.

Another point that Sara makes is: "People also don’t know how to help the sick and dying". This is very relevant just now as I try to determine how I can help a class mate from high school who has recently received a terminal diagnosis. I know what I needed from my friends and family when I was unwell. I needed practical help and honest conversations. I needed friends who were willing to let me speak the truth about how sucky my life had become. Whilst I did get that from some friends it wasn't always the case. The longer I was sick the more invisible I became and the more life receded. Some people stayed away because they were uncomfortable and then later there was the inevitable "but you know I was thinking about you all the time". Um no. No I don't know that at all.

The purpose of this post is to ask you all to step outside of your comfort zone for the sake of your chronically or terminally ill family or friends. While flowers may be lovely, a few hours of your time is absolutely invaluable. Cook and deliver a meal, pick up some groceries, take the kids for a few hours, clean the bathroom but more than anything else LISTEN and BE PRESENT. 

The Longest Year

Wow it's been almost a whole year since my last blog post. It's been a very long and very difficult year. And I haven't really dealt with it in a way I can be proud of. But I survived it and here I am out the other side and finally finding the right headspace to go forward with my journey.

So why was it such a hard year? Well for starters I miss my family and friends in the west. More than I ever imagined was possible. There is so much I took for granted over there that I simply don't have here. Some I will regain in time, but some I need to accept is firmly in the past. I need to accept that and move forward. That's a tough thing to do.

Also there is the ongoing challenge of settling in to a new home and hobby farm. There has been so much work done to make our life easier here but there is even more still to come. The constant battle to possum and beagle proof garden beds, getting the chicken pen finished and fixing fences for the goats. Sigh. So much work ahead and my energy reserves are very low.

But most significantly the past year has been difficult due to my ongoing cancer journey. Unless you've been through it, it's impossible to comprehend the amount of stress the need for constant vigilance causes. Last year I was tested for no less than six different types of cancer. That's an average of one every two months. And it's not just the testing that is a strain but even more so the waiting. Waiting for the tests to be done and then waiting for the results. Remember these tests are ordered in response to symptoms, not just because they seem like a good idea. Imagine you experience pain in your shin bones or shoulder blades? Your GP will probably tell you to try to rest them and see if the pain continues. Not me. I get tested for bone disease. Should you experience stomach upsets and bloating your GP might tell you to avoid certain foods and see how you feel. Not me, I am admitted to hospital to have biopsies taken under sedation. Irregular and painful cycle? Another trip to hospital for biopsies under general anaesthetic. Blood tests, bowel screening, more scans. The constant ups and downs are exhausting. Eventually my body decided to stay in a heightened state of alert rather than ride the rollercoaster. Bam!  Adrenal fatigue.

So why am I finally writing a blog post now? Why tonight? A few reasons really, but one main reason.  Today was scan day. And even though I was dreading what the doctors might find I came through with flying colours. Stunned but so relieved. I can't even begin to express how I feel tonight compared to this morning. And getting the good news was different today. Usually I consider it a win for another six months. But somehow today feels more final for me. I am actually starting to believe that maybe the monster might not eat me after all. That perhaps I am doing enough to stay out of it's reach. That it's time to start believing all my family and friends who tell me it's going to be ok. I am finally starting to believe that I'm a survivor! Or should that be a thriver?

Flipping cancer the bird!!!

A Roller Coaster Ride.

Life is tough.

Everyone has a fight to fight or lessons to learn.

I have battled through some really difficult times in order to still be sitting here today. As have many (if not all) of my friends.  I can't speak for anyone else. But for me, even though I have struggled too, life was never as tough as it is today. Not until cancer entered the equation. Cancer is the unknown, the mystery box. Even three and a half years post-diagnosis, after all the treatment and testing, I still can't relax.  I thought I could but it turns out I can't. And probably never will.

The thing about being a cancer survivor is knowing that the journey is NEVER over.  Every new ache or fresh symptom creates an alert and is followed by yet another battery of tests to make sure it's not caused by cancer.  That's where I am again, in the middle of another bunch of tests and scans intended to rule out the big C.

You might think that all this testing and ruling out is a good thing. And perhaps in some ways it is, but more than anything it is physically and emotionally(and financially) exhausting. Nobody can really understand that unless they are on a similar journey.  Don't misunderstand me, I'm grateful that most of my friends can't fully understand and I truly hope they never do.

Six weeks ago I was feeling very anxious in the lead up to my regular annual scans.I had nearly two weeks of feeling positive and relaxed after I saw my oncologist and then last week I saw my GP. Before I knew it I was having more blood taken and being booked into hospital for more tests.

These constant shifts back to anxiety are a form of torture I'm sure. I can't relax. I exist in a highly alert state ready to fight or flee at a moment's notice. I don't sleep well, waking at every tiny sound. I wake feeling fatigued. I go to bed feeling anxious. And like riding a roller coaster I get off feeling like a wrung out dish cloth.

Being diagnosed with cancer is just like hopping onto a roller coaster for life. And just like being on a roller coaster there are some times when I just close my eyes and pray to get off.

Not today though.  Today I am continuing my fight, searching for answers and trying to make this day (and every single day that follows) count.  I hope  as you read this you don't think that I'm feeling sorry for myself in anyway, I'm not. Not at all. I AM feeling tired(exhausted), sore and afraid but also very grateful to be alive and able to feel tired, sore and afraid.

Love and light.