Living with cancer, or the impact of cancer in our lives presents many challenges affecting us physically, mentally, emotionally and spiritually. One of the most persistent challenges is the difficulty in making plans or decisions. Whether due to multiple scans, testing, medical appointments or treatments, or being so unwell, anxious or fearful that it limits your ability to participate fully in life’s events and activities, making plans and decisions becomes an ever present challenge.
Bloomhill’s lived experience group discussed this topic at a recent meeting and decided to share their perspective on this topic. They acknowledged it is different for everyone, but also shared a wonderful analogy of the topic.
Millstone or Milestone?
- Millstone in the cancer journey: being forced to deal with the confronting reality of a cancer diagnosis and interpreted as being a particularly difficult burden.
Cancer is confronting to both the sufferer and their families and friends – Having cancer is like bearing a millstone around my neck.
- Milestone in the cancer journey: A milestone is a key event after treatment that marks a significant stage of healing.
Cancer milestones are not goals that you are unlikely to reach. They are key points throughout your cancer journey that mark progress or that you have reached the next “mile” of your cancer journey.
So how do we get our head around this analogy?
To try and get some perspective on this, members of our lived experience group shared their personal perspectives on this analogy, with the intention to find some common themes in mindset, taking action and making changes in the way they did things (please read their full contributions below).
In summary, the key pearls included the following phases;
- Be a warrior, not a worrier. In life, it is important to let go of the past and focus on the present, the future, and the things that you can!
- It doesn’t matter what milestones look like for you, make them count. Celebrate them. We never know when one of those is going to be our last one, so make a point to do something special as much as your mind and body allows it to and keep creating those amazing memories for yourself and the loved ones and friends around you!!
- During cancer we are given lots of advice and information and my advice is that I hope that you honour your season. My wish for everyone, including myself, is that we have the opportunity to DO, FEEL, BE…. shine so bright that you light people up just by simply being YOU!
- I am an optimistic sort of person, and I strongly believe in keeping busy, in being productive, in giving my time to others. Most importantly, I’ve celebrated every end-of-treatment milestone in a special way.
- The choice of who to tell and how to tell is yours – It is intensely personal and challenging. Remember this… Friends don’t let friends fight cancer alone
by Leanne, Melanoma Mumma
I wholeheartedly accepted the invitation to contribute to this article but when I went to put pen to paper I realised just how difficult this would be as this is the very thing I am struggling with at the moment.
When you prepare for your passing, when death seemed to be imminent and there were a number of times when this looked like the cards that I was dealt with – to standing up to cancer! The multiple surgeries, treatments, every hospital admission for side effects and complications, scans and appointments to being told that you just might have more life yet to live, WHAT!
I feel like I have just silently slipped out of a race I never wanted to be in and have found my own lane and am proceeding to move forward one step at a time. But here is the big question, it is like a giant road sign looming on the side of my lane, “What is your next best step?!? The answer is I still don’t know but I do intend to find out.
In the meantime, I will take each day as it comes. I will continue to celebrate milestones, cancerversaries, advocate for myself, trust in my body, be intentional with my time and live life with love and kindness.
During cancer we are given lots of advice and information and my advice is that I hope that you honour your season. This is how I have managed so far. For example when I was going through treatment and dealing with side effects, this was a season to honour my body and rest and recover and not a season to plan big projects etc.. There was a time or season to grieve, to cry, to celebrate, to be fearful, to party, to be sad, to question, to ask for help and there was a time to sit with the teachings of discomfort, fear and grief. It is hard, it is heartbreaking but with each stormy season there was a rising and forward movement.
I hope your movements however big or small lead you to honouring your season and to making plans.
My wish for everyone, including myself, is that we have the opportunity to DO, FEEL, BE….shine so bright that you light people up just by simply being YOU!
Thank you for the opportunity to share my thoughts and please if there is something in my words that speaks to you and you want to include in the article, I would be honoured for you to print them.
A Milestone, not a Millstone!
By Merran Williams
I carry the faulty BRCA gene, and over the past fourteen years I’ve had ovarian cancer recurrences three times and breast cancer once. So, I feel I’m pretty experienced in this cancer story.
The treatment side of it is hard. I’ve had lots of abdominal surgery, chemo, radiation, hormone therapy and now I’m on a magic drug that just targets my gene fault. I am an optimistic sort of person, and I strongly believe in keeping busy, in being productive, in giving my time to others. Most importantly, I’ve celebrated every end-of-treatment milestone in a special way.
In 2011 I travelled to America on a Churchill Fellowship to visit nurse led cancer survivor centres in New York, Denver and Texas (I’m a retired RN now). Then in 2017, when I finished my breast cancer treatment, I went on a painting holiday to France with my son and ten other artists. This was amazing. The planning then the doing took a few months but the reward has lasted to this day.
Another way I’ve celebrated the end of treatment is to buy a significant object that reminds me to this day that I did it and came through it. When you’ve had cancer it’s always in the back of your mind. You never really know when or if it will come back again. As I said before, I manage this worry by keeping busy and by celebrating the hard work my body and mind have gone through to get through it. I am in remission again, living the good life. Thank you Bloomhill for all the help along the way!
Photo of me on train from Paris to Toulouse on my painting trip, and huge vase I bought after breast cancer episode!
Cultivate Gratitude in Your Life
by Noel O’Mara
I underwent chemo and radio therapy and 3 lots of extensive surgery to remove a tumour in my oesophagus and stomach and also had a bowel resection. This resulted in the loss of six centimetres of my oesophagus, 2/3rds of my stomach and a section of my bowel – My life has undergone huge change, compelling me to ‘adapt’ my changed body and its functions.
These are the hardships that cancer has inflicted on my life…
Imagine, if you will.
- Whenever you go out anywhere you must ensure there are toilet facilities available.
- When travelling any distance you must ensure you’ve prepared by applying mitigation medication.
- When going out for a meal you can only eat entree sizes.
- When have an alcoholic beverage I can only have a small one or you’ll get too drunk.
- There are a number of foods you can no longer eat – If you do, you’ll experience rampant gastro and extreme nausea.
- If you are going out in the evening / night, you MUST have an afternoon sleep or you will run out of energy.
You noticed the word hardships?
Those five dot points are my reality – FOR SURE!
BUT – They are NOT hardships – Because I am here, I’m truly grateful for them.
Gratitude has healing benefits that improve my mental and physical health – reduced depression, lower blood pressure, decrease inflammation, and improve immunity. For me as a cancer survivor, practicing gratitude has resulted in me developing healthy ways to cope in times of stress. I am no longer worried constantly about cancer returning. By engaging a mindset of “An Attitude of Gratitude”, I have improved my quality of life and overall well-being.
Each day, I devote time to think through things I am grateful for, I have an appetite and I love to cook; I’m a bit of a ‘Greenie’ and I love gardening; I’m a bit of a ‘Rev Head’ and I love working on my motorcycle, and I’m a Husband, Father and Grandfather – And I love my family. *** (See note below).
My wife and I also have a Cavoodle (Louis) We (Or one of us individually) spend time walking outside with him. When I walk him, I look around and notice many aspects of my surroundings – sights, sounds and smells; the warm sunshine, the smell of flowers, birdsongs and the sounds of nature. I often take a different route each day and discover and appreciate differences.
If someone were to ask you right now what you’re grateful for, would you be able to answer, without thinking?
I attended a Mindfulness Meditation course at Bloomhill – Meditation is a powerful practice in self-awareness. The goal is not to silence your thoughts. Rather, it’s to become an active observer of them. The process of meditation is all about allowing the mind to do its thing and accept it as it is.
Mindfulness Meditation activates areas of our brain and changes our paradigm to enhance positive traits and compliments an “Attitude of Gratitude”. I regularly practice meditation and all of a sudden, everything in my life flows with more ease. I am less reactive and are better able to handle life’s challenges with an “Attitude of Gratitude”.
*** I’m also a swearer and love saying F**K Cancer.
Love Light & Peace
Here is a personal reflection on Milestones that can be added to Noels amazing work so far:
On Sunday, I turned 49 years old. In the past few weeks, I have been reflecting a lot on the last 10 years of my life. When I turned 39, I was quite fit and healthy, working two hard jobs, enjoying life, etc. I had no idea just how close I came to that year being the last year of my life. By the time I turned 40, I was feeling a bit sore and run down and doctors just put it down to hard work.
Long story short, a few months after I turned 40, I ended up in Hospital where I spent the next 133 days straight fighting for my survival from cancer. A few days into that stay, some doctors were urging me to go off to Dove cottage and die peacefully within a few days or so. I spent long stints of time in ICU, had the panic button pushed on me multiple times and even an emergency surgery in the early hours of the morning. A few months after that I was back in Hospital again for lifesaving surgery and the panic button was pushed a couple more times.
Many people, including professionals, were convinced I would die in that time. Experience had told them so. But, hey I’m still here to tell the story! That experience has really made me appreciate and understand Milestones, how big or small. They are all worth celebrating! Christmas’s, birthdays, recovery breakthrough’s, career progress, etc.
For me a small milestone might be celebrated with an intimate dinner at a restaurant or drink/toast of a nice drop. Larger milestones, I try and celebrate with a trip away somewhere. Cruising is usually my choice of travel there. (Any excuses to jump on a cruise really). In fact, Cruising holidays were a great love of my wife’s & I before cancer. We had to cancel about 4 cruises in that time I was in Hospital and later recovery. When it looked like I was finally starting to defeat cancer, I said to Cancer “F@#% You, I’m gonna cruise even more so now. So, at the time, I set a goal (milestone) that I want to go on at least a 100 cruises before I die. More recently, I have been thinking why set such a low milestone, lol. Let’s make it 200 hehe. The first few cruises in the years after treatment I was often wheeled onto the ships in a wheelchair and used them along with my walking stick.
Cruising has currently taken us to over 40 countries around the world and our current cruises Milestone tally sits at 35. Something I am so grateful for. Every one of those cruises (milestones) has created beautiful lasting memories, not to mention the education I have picked up along the way in world cultures and history.
My point with the above is, that it doesn’t matter what milestones look like for you, make them count. Celebrate them. We never know when one of those is going to be our last one, so make a point to do something special as much as your mind and body allows it to and keep creating those amazing memories for yourself and the loved ones and friends around you!!
One of the biggest decisions I have had to make was stopping chemo after my stage 4 bowel cancer. I had only had one week of chemo during which I experienced extreme pain in the large bowel area. This became unbearable by the end of the week, not helped by the fact it was Easter & most Drs were closed. I rang my oncologist & she just said take some Maxolon. She must be kidding! I then went to a Dr that was open over Easter & the lady Dr was most unhelpful, in fact, quite rude. I don’t remember much of that Easter as I went in & out of consciousness. On the Tuesday after Easter my husband rushed me to me to my usual GP. One look at me in fetal position she called an ambulance to the surgery & they took me back to Selangor hospital. I once more I don’t remember much only that I woke in intensive care. It turns out I was allergic to the chemo given for bowel cancer. It had eaten away part of my gall bladder which by now had turned gangrenous. I needed emergency surgery to remove my gall bladder. I almost died twice once through loss of blood & secondly because my gall bladder was pressing on my lungs as it was so swollen I couldn’t breathe. I remained in hospital for another 2 weeks & was very weak when I left.
I made an appointment with another oncologist who diagnosed the allergy & helped me make the decision not to have any more chemo. This was quite frightening as I wasn’t sure if my bowel cancer would come back having not completed my treatment. For years I had PTS if I saw anyone having chemo. I had to try & overcome this as I have a portacath which needs flushing every 2 months in a chemo ward. My new oncologist understood this so I had the flush as far away from those having chemo as possible. It is only now, 20 years later that I can now at least go in for a flush & sit nearby those having chemo.
Having had 5 cancers, all primary thank God (seems strange to thank God for cancer) I must say that strangely I have never had milestones, maybe good as I’d have to have them most of the year by now. However I did visualise healing quite a lot. I’d picture healing light going through me, scissors cutting out all surrounding tissue that may have been affected plus other visualisation along similar lines. Meditation became very important to me & after each cancer & I attended meditation at Bloomhill every week after my cancers. Walking along the beach I found very therapeutic, so too chatting to fellow cancer folk at frequent morning teas after all sessions at Bloomhill. To this very day I visualise healing energy coming to me via one of the therapists. Therapy at Bloomhill is the only time I fully relax as I have much going on in my life. It’s super important to me as I strongly believe stress is a deadly enemy for all sorts of illnesses.
I also believe I am a fighter to try & do what is best for me. This is not always successful but, if I trip up, I get up & try again. Of course I’ve been nervous before any checkups but once given the all clear I sigh with relief & try & get on with living. That’s to say, it’s not easy with all the after affects of several cancers. I have chronic fatigue as it’s all taken a toll on my body. I have a paralysed right side of my face which a caused my nose to drop & inhabit my breathing & I am still to have surgery for that. I am deaf in my right ear which is a result of my brain tumour as they had to sever my hearing nerve which cannot be fixed. Chemo caused my teeth to fall out & I need 3 implants to secure a denture which I cannot afford. I have a stoma which is the bane of my life which is super over active causing me to lose more fluid than I can replace making me dizzy & unable to think clearly. For this, I need to go in for regular infusions of electrolytes & fluid. So it is however, I am sure I’m doing pretty well considering ….. all with the help of Bloomhill and the treatments I receive.
If you have any reflections you would like to share with the Lived Experience Group or Care team, please email firstname.lastname@example.org or speak to one of the nurses on you next visit.
All information provided by Bloomhill is based on research and best practice guidelines. Our model of care utilizes the Clinical Oncology Society of Australia (COSA) domains of wellness along with available clinical evidence. Always consult your care team regarding matters that affect your health. This is a guide intended for information only.