Inspiring Stories

Kaye Ellis - A Journey of Discovery

“Well I don’t know what you are doing but keep doing it.” These were the words of my oncologist in January of this year when I went to hear him deliver the news revealed by my scan the previous week.  Again last Thursday he reiterated those same sentiments when I went to see him after my follow up 6 monthly scan of the previous day.


Predictably the overwhelming relief that things hadn’t got worse but indeed had improved yet again, precipitated a fresh bout of tears. I am still here and it looks like I can make plans for the future and not just the immediate future after all. I can think about things now…things  like my little grandson’s first day at school, a course that I might like to do and planning for our retirement.


It is easy to identify a time that delineates the start of this journey of discovery that I have been travelling. We live in a very hilly area in the bush on the outskirts of Albury NSW and I enjoy long walks in this idyllic setting. My way has always been to push my limits so in spite of recurring pain in my left hip, I kept walking up and down the hills and made regular visits to my osteopath in the hope of getting some relief from the pain. On one such visit she suggested to me that there was more going on inside me than muscular problems and gave me a referral for an ultra sound. Well that’s when it all started really.


There followed a CT scan which showed unmistakable evidence of a growth consuming my left adrenal gland. It was about 10cm long and 5 cm wide but the good news I was told was that it was most probably an adrenal adenoma, a benign growth which apparently is very common. I would however need to have it removed by virtue of the space it was taking up in my body and clearly the pain that it was causing. It was difficult to keep referring to “it” so in the family we began to refer” to Adeline.


On 30th April 2009, I had a biopsy to determine exactly what Adeline was. The news wasn’t what we had hoped for. Adeline wasn’t an adenoma after all but an extremely rare type of carcinoma. My family was devastated. We all were. Who can face the highly possible, almost probable demise of their wife, mother, stepmother, friend with calm and clarity? My loved ones rallied around with love and support and I was made certain of the place that I own in each of their hearts. I remember mother’s day that year so clearly. My children came home and I received a beautiful book dedicated to the first year of our little grandson’s life. I thought it was probably the only year of his life that I would witness. My husband, Warren, was fearful too. I know that because he never takes photos unless prompted but that day I had to pose for a myriad of photos with little Sol and by myself. Maybe it would be my last mother’s day. I was thinking that and I know Warren was too.
Lots happened in the first two weeks of May and one of the best things was a letter that arrived from my friend, Ansje. It was addressed to Adeline.

“Dear Adeline,
You don’t know me but you have impacted greatly on the life of my oldest and dearest friend Kaye and therefore I must speak out. It is only natural that I should feel protective of her. After all, we’ve shared our lives since we were children. We needed our friendship then, but never more than now.


Kaye’s health has been compromised for some time so in a way it’s a good thing that you have been discovered. Now at least she has an adversary to deal with. So of course this means you have to GO! You’ve had it cosy for too long. Like a parasite you latched onto Ms Adrenal and grew big and fat, sucking the life out of it. No wonder Kaye was struggling when her gland was exhausted, unable to do its most important work of maintaining metabolism, dealing with stress and many other things. Under par, not at her peak….all that will now change because you, Adeline, will be leaving ASAP! It’s the end of the line for you. This is where you get off and get permanently lost!


To be fair though, you did serve a purpose. You made Kaye slow down and reassess her life, the pace, the direction. She has to rethink her purpose now, She has always been task oriented (conditioning) and a high achiever…the golden girl, the good woman, the wonderful wife and loving mother and daughter. The list goes on. Kaye dots all her i’s and crosses all her  t’s. Slowing down was not in her vocabulary; but it is now thanks to you. Some of us find it difficult to readjust how we live when circumstances change. We are not needed in the same way as before..work, family, the community. We're gradually becoming obsolete so we need to change direction. Illness has a way of reminding us to take stock, sit still, re-examine and then rediscover a new way of being. Our world is pregnant with possibilities.


Anyway Adeline, you are not part of her future. You don’t serve a purpose. You are surplus to requirements, obsolete and definitely a pain in the kidney. Speaking of which I believe you and kidney have formed an attachment and may have to leave together. So be it! You can’t use kidney and your relationship to plead your case to hang around longer. It’s over. You’ve got your marching orders. You’ve been found out and fingers are pointing at you. There’s the door, leave, don’t look back and clean up any mess before you go. Left overs will not be tolerated. Adios, goodbye and good riddance!
Give my girl her vitality back, her strength and therefore enthusiasm to undertake all the exciting possibilities that now sit before her. Some of which will involve me of course.
Thankyou for the opportunity to sound off and to feel gratitude for this amazing miracle we call life.
Ansje"

So exactly two weeks after Adeline’s sinister nature had been revealed on May 14th 2009, I was admitted to the Albury Base Hospital to have my left adrenal gland, my spleen and possibly my left kidney removed.


Warren was with me and has been every step of the way since then, supporting me and loving me. My friends and family, my work colleagues prayed for me and I felt an unforgettable peace as they all sent me a pink blanket of love at the time that I needed them most. I felt shrouded in God’s love and the love of everyone praying for me, even those I did not know. It was incredible.


I remember the doctor saying that the operation was over and it went well. They didn’t have to remove my kidney after all so I was just minus one adrenal gland, my spleen and Adeline.
The next few days in ICU are a bit of a blur. Warren, my husband and our adult children Jon and Jenni were there.  The memory of Jenni’s beautiful face filled with worry makes tears well in my eyes. Jon, with caring concern was busy charming the one and only unpleasant nurse so that she would be nice to me. Jac, who had a new baby waited outside in the corridor just to come in and see me for a minute. I feel so lucky to have such a wonderful family. I also have a clear memory of random events like Linda was dashing in with flowers and books and kissing me repeatedly. The pain was bad then.
I left hospital armed with the information that they had successfully removed all of the cancer that was present but that unfortunately in the opinion of one of the attending surgeons this rare type of cancer was most likely to return as it was like spot fires and could spring up anywhere. Another surgeon told me I should just go on home, get on with my life and pretend that I had never had cancer.
 Ansje came up from Melbourne to look after me so that Warren could go to work and his life could assume some sort of normality. She is such a treasured friend and cared for me with love and devotion. After a couple of weeks Ansje went home and the weeks that followed were a physical and emotional challenge. I had lots of scary thoughts about the end of my life and sometimes felt that I was about to go into a blind panic. I kept taking 3 slow breaths and tried to write down what I was feeling before and after the breaths and to take note of any changes.


It was during this time that I began my meditation practice having “Peace of Mind” and “You can Conquer Cancer” as my constant companions. I tried and tried to watch the thoughts and to let them go but my efforts met with varying degrees of success. I admonished myself and thought I would never be able to meditate to find peace. I was recovering well physically but was plagued with questions like “What is my job in this world?” There were lots of bad days.


Then I would have a good day and start to look forward to things. I would make plans. It made me feel normal, after all I am a planner and a woman of action. I organised things like catching up with my friend Bernadette for lunch. She is always such a tonic for me.


Letting life unfold also sounded good to me on some days…maybe even exciting. I explored the possibility that I don’t have to plan everything or to orchestrate the course of every day. It was a time of great reflection for me about my life, my part in the family and my purpose. God was present in every day as my guide and counsellor.


I was constantly reading whatever I could get hold of in the way of positive stories of the ways in which people had recovered from seemingly hopeless situations. There is no shortage of information available on the internet and I had access to lots of books describing how diet and meditation had changed the course of the disease for many.


It was a challenge living in Albury but I made the decision to travel to Melbourne each Thursday to attend the Gawler Foundation’s12 week “Living Well” program being held in Footscray. The excitement mounted for me as each day drew closer to October 1st, the first day of the course. There were a few aspects of the experience that held appeal. Firstly I would be staying with my son in Port Melbourne and able to see my daughter each week too when I was in Melbourne. Secondly Ansje was keen to come with me as my support person and thirdly I love train travel and the opportunity to go to Melbourne regularly was a real treat. The course itself and the knowledge that I would absorb was clearly only one part of the motivation to take part.


I was so prepared and ready to learn all I could and integrate this knowledge into my healthy lifestyle. “The Bluestone Church” sounded great as a venue and from the outside it was appealing. Footscray is not my favourite suburb. The air seems dirty and not really the environment one would choose for a well being experience. Ansje commented on the austerity of the place after we left that first day and she was certainly right but funnily enough I felt quite accepting of the atmosphere, almost as if it was meant to be like that to fulfil some higher purpose. Seikan, the facilitator of the group, referred to the basic nature of the place likening it to a camping experience. Maybe and uncluttered space is what we needed to be free from the distractions of modern comforts. There is that element of there being just enough…toilets and wash basins with second hand soap…hot drinks available in the break but that is all. Part of me connects this with the minimalist lifestyle that promotes a satisfying diet with wholesome food devoid of enhancements.


During the following week I was due for a scan to see if any unwanted re occurrences of Adeline had shown up and true to the predictions of the surgeon, another unusual growth had appeared in the area where my spleen had been. My oncologist said the news wasn’t good. In this type of rare cancer, adrenal carcinomas were historically secondary, the tip of the iceberg, and as this didn’t appear to be secondary he wasn’t surprised that it had quickly reappeared. He was very pessimistic about my future as he didn’t know of any chemo or radiation that was appropriate. I told him about the course I had begun and though he was mildly interested, his advice was to go home and eat what I felt like as it would make no difference!


At this stage I believed I needed a second opinion and with the help of a friend in Melbourne who was able to pull some strings I soon had an appointment with a surgeon in Melbourne who sent me to the Alfred Hospital to have a PET scan. Results of this scan led the Melbourne doctor to believe that the “thing” was not a reappearance of Adeline but a small piece of spleen tissue that had been left behind after the operation. We were elated. Text messages were sent and received from all those dear people who were following the process with interest and concern.
Our elation was short lived. My oncologist in Wodonga did not believe it was spleen tissue and wanted confirmation of this by ordering a damaged red blood cell scan. Back I went to the Alfred Hospital for yet another scan. The results of this confirmed that it was not spleen tissue so most probably the spot fires had started. Its position makes it impossible to do a biopsy to absolutely determine its nature so all the medical profession could do then and now is to monitor its progress


During those few months I rode a roller coaster of emotion from elation to the depths of despair. The trips to Melbourne, the love of my family and the support of the people at the Bluestone Church each Thursday, provided the lynch pin that I needed. My confidence and my strength gradually returned and I began to feel more and more in control of my destiny.
After my scan back in January the good news was that Adeline’s baby had shrunk by 5mm and then again last week I was told that she has shrunk by another 4mm. There is only 11mm remaining of her now so I believe she is on her way out.  People often praise me for the changes I have made in my life as if I have made a huge sacrifice. Well maybe it has been hard at times but mostly it has been a challenge and I have appreciated the opportunity to look at things from a different angle.


Cooking in a totally different way has been and still is a steep learning curve. Warren has been fantastic and volunteered to eat whatever I do as he believes the changes will benefit him too. The major difference in our diet is that we are now vegetarian although once a week we eat Atlantic salmon which I poach in a mixture of lemon and orange juice. We keep our diet as alkaline as possible and start each day with lemon juice in water. I have purchased a Vital Max juicer and daily juice carrots, beetroot, ginger and as many green leafy vegetables as possible. Where possible we eat organic and now grow a lot of our own vegies. I also use chick peas quite a bit and find the recipes on the Gawler site a really great resource. The other major change is that I don’t eat any sugar. That was hard for me at first as I have always been a sweet tooth and was very fond of baking cakes ands slices. It is just amazing how many yummy things you can cook without sugar when you start to experiment!
Meditation has become a regular part of my life every morning and evening and I love it. I look forward to my meditation sessions which are often led by Ian Gawler on one of my many mediation CD’s. Warren sometimes meditates with me too and I am blessed by a few friends who put time aside to join me to explore meditation together and to talk about the deeper issues of life.
All of this has provided a time of growth and learning for me. The best by-product of all is that now I can look forward to my future in this world.


 My journey of discovery has taught me a great deal. I have learned about making choices. I can choose to live my life mindfully. I can think about what I put in my mouth and make decisions that will honour my body. I can be thankful each day for my strong legs that take me up the hill to enjoy the beauty of nature there. I can be thankful for the love of my family and friends and I can rejoice in the lessons that this journey of discovery is teaching me.

by Kaye Ellis
August 2010

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