Cancer treatment ending can seem like such an exciting milestone to aim for, such a critical point in time worth anticipating, marking and celebrating.
However, cancer isn’t suddenly finished when the last course of treatment is complete. Your body and your mind have experienced significant challenges and jumped enormous hurdles to cross the ‘finishing line’, and the consequences of that can last for years. It’s a whole new chapter of life – one that can bring happiness and hope but can also bring new worries and fear.
Many people find that with the end of treatment comes a new, unwelcome period of uncertainty; a feeling of free-fall without the stability of a treatment regime and the structure of hospital supports. There’s less expert guidance, there are no definitive numbers and tests to determine the next step, the check and measures fade away, and your body might feel like it’s not recovering as it should.
Some people are concerned about cancer recurrence and possible outcomes associated with that. This can be quite intense – dominating thoughts, significantly interrupting thinking patterns, and even affecting the quality of life. Sometimes, people experience ongoing physical symptoms, such as fatigue, pain, lymphoedemaabnormal swelling in the body (usually in the arms or legs) that is caused by a buildup of lymph fluid, problems with mouth/teeth, weight changes, trouble swallowing, bowel/bladder control, hormonal symptoms, intimacy and sexuality changes, other health problems.
Sometimes, the main concern is the effects of your cancer on the lives of family and friends around you, your communities, and your relationships. Some find that even just returning to family life, and re-discovering their role or position in the family is tinged with extra complications that weren’t there before.
And many are plagued by concern about their financial situation after a long illness, with likely interrupted work attendance, and of course the extra expenses during treatment – whether that be the cost of treatment itself, or the extra needs in a life revolving around cancer.
All these experiences make sense. You’ve been through such a difficult time and have had to make some major life decisions. Your body has been impacted by cancer and its treatment. Your outlook and your whole way of life may have changed. So, it’s important to face these feelings and learn how to deal with them constructively. The expectation that you’ll return to life as it was before is misplaced because so much has changed, and you and your family/loved ones will need time to adjust to life after cancer, just as you took time to adjust to life with cancer.
Ongoing physical symptoms or exhaustion can be normal and expected, and it’s really good to be aware of them beforehand and address your concerns with your healthcare team – ask them what likely long-term side effects are in your particular circumstances, how to recognise them, what to do if they occur, and what to do to be as healthy as you can be.
Coping with all of these challenges day in day out can feel isolating and overwhelming, so sometimes being involved in a support group with people who have had similar experiences – whether that be in person or online – can give you a sense of belonging, help you feel heard and understood, and can provide support and advice as you make your own way through the aftermath of cancer.
Living with uncertainty is draining. It’s what the global population is learning anew during this current COVID-19 pandemic. The constant wondering about whether little aches or other symptoms can indicate a relapse, the rumination about timing, chances, symptoms to look for and outcome of a possible relapse is exhausting and worrying. Many people find that this fear of recurrence gradually diminishes with time, as they think less and less about cancer, but it can certainly be triggered by certain events later on.
Sometimes it’s good to realise that you’re one of many dealing with these struggles, but sometimes it will suit you better to not try and look at everything through a positive lens. Whilst positive attitudes will help you sometimes get on with things and move forward, it can be exhausting and detrimental to feel like you have to ‘act positive’ all the time. Don’t beat yourself up or let others make you feel guilty when you’re feeling anxious, angry, sad or distressed. Cancer is not caused or altered by a person’s attitude and thoughts – positive or negative. Don’t allow that myth prevent you from seeking help if you’re feeling particularly negative for a prolonged period.
If you’re feeling like you need support through or after your experience with cancer, please contact us at Rare Cancers Australia on 1800 257 600 or email [email protected].
Authored by Dr Emily Isham