5 May 2020

Hospice

I didn't even know that Hospice existed until cancer struck my family. I was just twenty years old when my father succumbed to brain cancer.  He spent the final three and a half weeks of his life in hospice care.

One night at Whittle Ward, sitting by my father' s bedside, I knew how it felt to despair. I had taken to sleeping at the hospital in a reclining chair next to his bed, spending night after night praying for a miracle, and exhausted from the constant vigil. I needed help. No other family members were there that night so it was up to me to make sure Dad was not left alone. Then a lady, whose name I did not know until I met her again years later, came quietly into the room. She offered to sit with Dad while I made myself a coffee and freshened up. That "small" gesture and those fifteen minutes made an enormous difference to my emotional state at the time and has continued to impact on my life over the past thirty years and more.

After my father died I was determined to become a volunteer with The Hospice Care Association. I wanted to make a difference for others just as that lady had for me that night. Initially the association rejected my application, several times, because they believed my own grief was too new. Instead of waiting I decided to put myself through the training at TAFE and then apply again with qualifications. I know they still hesitated - how could a twenty year old girl, still dealing with her own grief, help others in their time of need? But I was persistent and eventually they welcomed me as a volunteer. I spent a rewarding nine years working both in the hospital and behind the scenes.


The work I did as a volunteer ranged from spending time with patients or their families at the hospital, giving public information and awareness sessions, editing the volunteer quarterly newsletter and helping to produce flyers and advertising material as needed. All of it very important to the association.

In the hospital I enjoyed spending time with the patients, giving hand massages, reading to them, talking or just sitting with them quietly. I also spent time with members of the families when needed, did ironing, made tea and coffee and assisting the nurses with non-nursing tasks. My favourite activity was hand massage using aromatherapy, it was relaxing for both myself and the recipient and was a great distraction allowing them to talk if they felt like it.

All this work was very rewarding and I often feel that I gained so much more from the experience than those I cared for. However one day I went into a small business in town run by close friends of mine. They had been speaking with a client of theirs whose mother was in Whittle Ward at the time. She had been telling my friends of a young girl who had been visiting her Mum in hospital, massaging her hands and keeping her company. She told of how her mother looked forward to these regular visits enormously. All the family wanted to meet this 'exceptional' young girl and thank her for her kindness. 
Of course the girl was me - and I was/am in no way exceptional. As a hospice volunteer I did whatever I could to help those in care, their families and the staff caring for them. That feedback just reinforced for me how important it is to help. To be kind.
I'm still that same person, though an additional thirty years of life has left many more scars on my body and soul. I still believe that it's better to give than to receive and I still try to be kind, always. With my current health situation I'm finally learning to accept help with grace, I already know how it feels from the other side.
Be kind. Always.

16 March 2020

Four Weeks In

It's not yet four weeks since I was told that my absolute worst nightmare had become reality. Metastatic Bone Disease.
Week 1 was pretty much just shock, horror and an unexpected hospital stay. There was no time at all for processing what was going on. We actually felt that everything was happening around us and to us with no real input ourselves. Our heads were spinning and we couldn't tell up from down. If I'm honest I still feel that way at times.
Week 2 was mostly anger, denial and fear with daily hospital visits. It was a very busy week with lots of driving between hospital and home and lots of time in waiting rooms. We asked lots of questions like "how?" and "why?" but didn't really get any answers. It was a week of serious information overload, exhausting physically and mentally. I was given the first round of radiation therapy on my spine and the fatigue kicked in very quickly. I'm still fatigued now as I prepare for the next round of treatment. And we're still looking for answers.
Week 3 started with a long weekend here in Tassie which was really nice. Three whole days away from the hospital and finally a chance to do some bits and pieces around the home and farm - carefully of course! I helped cook a meal and watered my pot plants, everyday things I used to take for granted. We also got to see some of our extended family. Over the long weekend we did our best to not think about cancer - with mixed success.
The past week has been the hardest one yet. After reading/researching so much information in weeks 2 and 3 I now feel totally overloaded and overwhelmed. A friend recently asked me if I'd given any thought as to why this happened to me both 8 years ago and again now ... do I have any feeling for what may have caused/contributed to my having cancer? Of course I've given it thought ... a lot of thought. Perhaps far too much thought. So now I'm searching for ways to calm my mind and find some emotional and spiritual balance, to find some peace instead of turmoil.
Cancer has already taken so much from me and my family, I can't let it destroy my heart and soul too. So for the next little while I am going to try to focus on my mental well-being and on getting a good night's sleep. The questions will wait.


1 March 2020

Fight For My Life

Just over eight years ago I was diagnosed with Stage 3 Breast Cancer. I thought it was the end of the world. It was such a rude shock when life had just started to look the way I had always wanted it to. 

I'd already overcome some really serious challenges in my 42 years to date, big stuff like sexual assault, domestic violence, the death of a parent, a divorce, moving across the country several times, a second marriage, a massive emotional breakdown, severe recurring anxiety and depression, chronic insomnia, an almost second divorce and the loss of my first baby. Having overcome all of that I thought surely now it was time for some smooth sailing.

Here I was living in my home town of Perth, Western Australia. In The Swan Valley no less - wineries, cafes and a chocolate factory right at our doorstep! Happily reconciled with my second and forever husband, my best friend, the love of my life, communication between us at an all time high. A well adjusted 8 year old son at school with a close group of amazing friends around him. Retired from my career job in preparation for focusing on my beloved hobby with the hope of turning it into a successful home business. I was surrounded by the most amazing tribe of women friends and of course my mum, sister and other family members.

Unfortunately The Universe believed that I could deal with still more. I was diagnosed with breast cancer in November 2011 and fought it hard for pretty much the whole next year. And at the end of the intensive treatment phase my husband and I started to put together a plan for how we could support our future health and lifestyle best going forward. 

In 2013 a plan was hatched to uproot our little family from suburbia and make a Tree Change. Our idea was to have a little land, some animals, space between us and the neighbours, to be able to grow some of our food and have a more peaceful life. As hubby works from home this was not a problem for his employment and so the search for our very own piece of paradise began in earnest. Fast forward to December 2013 and we packed up and moved to Tasmania where we have family on my husband's side.

It's a wonderful life. We have the peace and serenity we were searching for. I look out any front window to see sweeping views of Mt Wellington and the surrounding hills and valleys. We have goats, chickens and our two dogs. Our home is comfortable not flash like the last one. We truly feel at home here. (If you are interested you can check out the farm on Facebook at CallMeFarmerJane). It really is our dream come true.

Here comes the real kicker folks.  

Two years ago I started experiencing really severe lower back pain. Having already been diagnosed with osteoporosis due to a broken toe and a broken foot I was x-rayed to see whether I had somehow damaged my back. The x-ray showed an "unknown mass" in the L4 vertebra region. Of course I was already under the care of an oncologist here in Tassie for regular check-ups (to monitor my wellness) so she sent me for an urgent MRI to determine what the mass might be. A few days later she informed me that "it's just a broken back". Yes I laughed - I even attempted a happy dance - a fractured L4. I can deal with that!

That was May 2018. Since then I've done everything possible to help my back heal. Physio, careful exercise, reducing my workload on the hobby farm ... to no avail. 

Two weeks ago on Monday, I finally went back to my GP in tears begging for better pain relief. In the past 12 months the pain had escalated from my lower back to my right shoulder, left ribs and upper back also spreading to my right hip and thigh. My GP was concerned at my mental state (desperate) as well as the lack of any strength in the right side of my body. On Tuesday I had my ribs x-rayed and a CT scan of my spine. Follow-up with GP booked for the next week. However on Thursday I received a call from the receptionist asking me to come in the next day (Friday) just before lunch. 

The news was beyond a shock. Metastatic Bone Disease. Just over a week ago at midday I was told I have cancer in my bones. Two masses on my lower spine and one each on two ribs. By 2:30pm I was on my way to the emergency department at the hospital on orders from my oncologist where they gave me an urgent MRI and unexpectedly admitted me to the oncology ward. I stayed there for 5 days and had many more tests and scans while the doctors and nurses tried to stabilise my spine and get my pain under control. Further tests showed additional metastases throughout my body. I'm riddled with cancer. There's currently no  mainstream cure available. Treatment involves shrinking the tumours if possible and keeping my pain controlled, giving me the best quality of life for as long as possible.

So that's brought you all up to date for now. Except for one thing.

I turned 50 in June and that's too young to give up.

I woke up today and decided that after 9 days of giving in to anger, despair, sadness and hopelessness enough is enough. I am NOT done. This is NOT the end of my story. I believe in dreams that come true.

So the real fight starts now. Give me all the information I can get my hands on, give me traditional treatments, alternate therapies, cures in the pipeline, give it all to me and I'm going to fight as hard as I can for as long as I can. I have too much to live for and absolutely no reason to sit back and let this happen.

This is the fight for my life.



10 February 2020

The Cost of Chronic Pain

I'm sitting here today trying to make sense of what's happening to me. I'm angry, so damn angry it makes me want to scream.

My jaw hurts from clenching my teeth so hard. My stomach hurts from too much pain medication and my head is ready to implode. Day after day, week after week and month after month I try to deal with this constant, tooth rattling pain. And no matter how positive I try to be there comes a day when enough is enough and it can't be taken in stride any longer.

I'm there now.

My anger wafts around the house in my wake and taints everyone who encounters it. My resilience is at rock bottom. Brave? No I'm not brave. I'm sick and tired of enduring and putting those I love through the wringer day after day as I try to endure. As I try to keep smiling. I'm sick and tired of barely being able to function. Of dealing with one body catastrophe just in time for the next one to hit.

Eight years ago I overcame a cancer that was predicted to kill me. During my treatment I nearly died twice. I now have severe osteoporosis. In the past 6 years I've broken a toe, a foot, 3 ribs and a year and a half ago I suffered a crush fracture in my spine.

Currently I have 3 dislocated ribs, possibly a fourth from last night, and a trapped nerve in my spine. The nerve pain travels from my right shoulder and arm, down my rib cage to my right hip and down the front of my right thigh. Shoulder to knee. Putting any weight on my right leg makes my whole side burn. The dislocated ribs on the left, just to balance things out, make it hurt to cough, to laugh, to bend and even to breathe.

A good friend once asked me who I killed in a previous life to deserve the challenges I've been dealt in this one? Why do these things keep happening to me? I have no idea but I really need to find out. Today we are debating whether to go to the ER where at the very least I can get some heavy duty pain relief and with luck x-rays or scans to seek the problem(s). Tomorrow we have our grand daughter here and I need to find some strength from somewhere before then.

I'm tired. Tired and angry. All I want is to be able to look after my family, my garden and my beautiful grand daughter in relative comfort. This pain is sapping the joy out of my days and the sleep out of my nights. It takes all my energy and shatters my peace. It's too much. Why should I have to deal with this much pain constantly and without respite. My family shouldn't have to deal with the fallout, the anger and tears of despair.

The cost of chronic pain goes far beyond the physical and the price is far too high. Not just for me but also for those I love.





20 November 2019

Family

My husband has three sons. I only gave birth to the youngest, but I love them all unconditionally.

I love my husband very much. So from day one it was extremely important for me to make it as easy as possible for him to see his boys as often as possible and to make sure they felt comfortable and welcome when they stayed in our home. It hasn't always been easy, especially early on when there was a lot of misinformation about me going around and a lot of misplaced anger. But we persevered and I now have a really good relationship with both. Being a step parent is much harder than you can imagine unless you're one yourself. Juggling the needs of someone else's children with those of your own child without showing favouritism is particularly difficult and looking back I see how I actually over compensated and it was in fact the youngest son who missed out.

I've known the two older boys (to be fair they are men now) since they were 7 and 10 years old, more than 20 years. I've watched them grow into fine young men and though we don't share blood I couldn't be prouder of them. Both have found amazing women to share their lives with and the eldest now has a child of his own. Yes I'm a grammy now!! That's really what you want for your children (and they ARE my children too) - happiness, love and health. I want them all to have the kind of relationship that I have with their dad.

The youngest son, the one I helped create, is finishing high school in a few weeks and is off to college next year. He's currently learning to drive! He's growing into a fine young man too. He may be  bit too much like me at times (fiery temper comes to mind) but he's also intelligent, sensitive, kind and loving. He's gathering a group of quality friends around him that will hopefully see him through to the end of his teens and into adult life. I'm proud of him too. I want for him what his brothers have found in their relationships and what I have in mine. I hope the family he creates gives him as much joy as mine gives me.

In my world family is everything. When I was younger I dreamed of having a daughter, but sadly that just wasn't meant to be. Our daughter, Jessica Rose, never opened her eyes. But now I have not one but TWO daughters-in-law who I love spending time with and a grand daughter that I absolutely adore. What blessings!!

I'm not interested in travelling overseas or going on adventures. I don't need bright lights and big cities or to play tourist. I'm content, no I'm more than content, to spend quality time with family and friends. Inviting all the offspring with their families over for a big homecooked meal makes me happy. Perhaps that's my Italian heritage talking. Hosting Christmas lunch or a barbeque, Sunday lunch or birthday celebrations and welcoming family into our home. That's where I find so much joy. I consider looking after our grand daughter (Grammy Daycare) a huge honour and privilege. Although I am very tired by the end of a day my heart is always so full. 

When people talk about their exciting holidays and tell me I should go there or do that I always wonder why. Why do they think I should? This year I turned 50. I live with the love of my life and the youngest son in our comfortable home on top of a peaceful hill in an absolutely beautiful corner of Australia. I have family and friends here to fill my heart and I have dogs, goats, chickens and a garden to keep me busy. I have a creative space and the time to use it. I'm more than happy with our quiet existance here .... it's more than enough.

Family is everything to me.


21 March 2019

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".

30 January 2019

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.