Once the immediate danger of cancer has passed, there are many other things to process. Here is some information on survivorship:
- Cancer and Careers Website
- Post-Treatment and Survivorship
- What Spins Your Wheels?
1. Cancer and Careers Website
Cancer and Careers is a website dedicated to empowering and educating people with cancer to thrive in their workplace by providing expert advice, interactive tools and educational events. Through a comprehensive website, free publications, career coaching, and a series of support groups and educational seminars for employees with cancer and their healthcare providers and coworkers, Cancer and Careers strives to eliminate fear and uncertainty for working people with cancer.
2. Post-Treatment and Survivorship
The Post Treatment Stage
I am at that stage of not being ill but not being well. It is often called convalescence, recuperation, rest, recovery and the post-treatment or survivorship stage.
Whatever the definition, it can be a challenging time for survivors with lots of things and feelings happening such as:
- A let down: I felt that I would be excited to finish chemo but when I finished, I didn’t feel that way. There were so many other things to deal with.
- A limbo feeling: I can’t do what I did before but I’m not ill. But I’m still not really able to plan or do things as usual.
- Grief can come to the surface: when you are having cancer treatment, you are often so busy and feeling unwell; it’s often difficult to process the cancer until it is over.
- Catching up with tasks and relationships: everything is put on hold for 6, 12 or 18 months while you focus on treatments. Then suddenly these issues are waiting to be resolved at the end of treatment. I now have a ‘to do’ list a mile long.
- Handling others’ expectations. “You’ve finished chemo; when will you come back to work?” The side effects are mostly invisible and people start expecting more. Also, convalescence can be seen as optional in our fast paced society. Rest can seem, well lazy.
- Lingering side effects. Depending on the type of treatments, survivors may end treatment with many issues that were not there before such as fatigue, lack of balance, pain, difficulty in walking, numb hands or feet, scar tissue issues, weight gain, lymphedema etc. Now each of these side effects has to be addressed.
- Fatigue: Post-treatment fatigue may conflict with the desire to get back out there and resume the old life… without the energy to do that.
- Exiting the system: Some people exit the medical system abruptly and feel a sense of being lost or scared. “No one is monitoring me anymore and what if the cancer comes back?”
- Fear of recurrence. Often when treatment ends, new fears arise about cancer returning, especially as we are not actively doing anything about the cancer e.g. chemo or radiation.
- Practical issues: there may be work, career and finance issues that were not there before treatment e.g. job uncertainty, an overdraft or inability to find part time work.
- Relationship changes: with cancer, some friends and family may disappear or just not understand. At the end of treatment, you may feel that you have lost people from your life or have challenging relationship issues to address.
- Depression: Some survivors face depression during or at the end of treatment. For many cancer survivors, the post-treatment stage is as challenging – or more so – than the cancer treatments themselves.
N.B. cancers and their treatments vary in their severity and everyone is unique in how they respond to treatments. Many cancer survivors simply revert into life as usual and that is great.
In amongst all of that, for many people, there is a motivation to make positive lifestyle changes and a new sense of the importance of time, relationships and balance in life.
But first things first, before jumping back into life, many cancer survivors need to take time to recuperate or rehabilitate themselves post-cancer. Side effects need to be addressed to improve quality of life and some people want advice on how ‘not’ to get cancer again. Also, physical and psychosocial effects may develop months to years after treatment ends. All cancer survivors need follow-up care.
The Ministry of Health defines cancer support and rehabilitation as: “the provision of the essential services to meet the physical, emotional, nutritional, information, psychological, sexual, spiritual and practical needs throughout a person’s experience with cancer”http://www.moh.govt.nz/.
The Cancer Control Strategy NZ outlines: Quality of life, when referring to health, means the extent to which a person’s usual or expected physical, emotional and social wellbeing is affected by a medical condition or its treatment. Evidence shows that when people experiencing cancer receive good social and psychological support, their quality of life improves. In order to achieve the best possible outcome for those with cancer, every aspect of their treatment and care must recognise their total needs. Their physical, social, psychological, nutritional, information and spiritual needs are all equally important.
In some cases, their quality of life is affected by physical impairments due to cancer; in such cases, assistance may be needed to enable them to perform everyday activities and live as independently as possible. The extent to which physical, psychological and social rehabilitation is required depends on the type and severity of the impairment and the type and magnitude of the treatment provided http://cancercontrolnz.govt.nz/support-rehabilitation.
Later on, I will outline a range of cancer rehab resources and detail my first cancer rehab appointment with a cancer Nurse at the Cancer Society.
3. What Spins Your Wheels?
With the New Year upon us, I thought it was a great time to talk about one of the well-known impacts of cancer (or other significant crises) for many people. i.e. now that I’ve had a life and death experience, what – if anything – do I want to do differently with the rest of my life? Cancer does bring ‘life’ into sharp focus.
After a cancer diagnosis in 2007, a friend and I were talking about everything involved. And then she said “and of course you must be thinking about what spins your wheels?” That expression has stayed with me and is relevant equally to the cancer journey and normal life.
What spins your wheels? Am I doing what I am meant to be doing? Do I love my life? Am I living my life purpose? These are all good questions and there is only person that can answer the question. YOU. There are however a number of good resources to assist you with the process:
- At New Year’s or anytime, we can reflect and write down what our dreams are. Or write a list of things that we love doing and do them.
- Phil Kerslake writes about life audits in his book Life, Happiness and Cancer. At any point in the cancer journey (or just life), we can take stock of whether we are really on the path that we really want to be on http://www.lifepaths.co.nz/
- Serena Star Leonard talks about consciously designing your life and lifestyle. Lifestyle Design is the art of creating a lifestyle to suit your wants and needs. It is all about choices; it is all about YOU choosing how YOU want to live http://www.retireyoung.com.au/
- Rachel Taylor focuses on getting clear on life purpose. Do you know without a doubt what your Life Purpose is? The truth is…most people don’t. We’re laughed at for ‘dreaming’ and praised for being ‘practical’. Before long, we’ve lost touch with our true self. Instead, we end up doing what everyone else thinks is important. But you can uncover your Path to Purpose again with your passions, gifts, and dreams http://rachelmaetaylor.com/
So, what do you want to do with your next years? How do you want to live your life? What spins your wheels?