For a great many people experiencing cancer, the most frightening part isn’t the actual diagnosis. In fact, finding out you have cancer can be somewhat of a relief, especially if you’ve suffered confusing symptoms, or been misdiagnosed. While a cancer diagnosis certainly brings with it many questions, it can also provide some very legitimate answers. While finding out yes, it’s cancer can be upsetting and even traumatic for many people, it can be somewhat of a validation and a confirmation – something is wrong with me, and I won’t stop until I find out what it is.
The most frightening part of cancer may not even be the treatment. Whilst many cancer treatments are invasive and painful, can bring with them unpleasant side-effects, and even cause the body to be permanently changed, for many folks the treatment phase isn’t the worst part. It can be the most reassuring part, and can even be quite comforting. People who know what they’re talking about tell you where you need to go, who you need to see, and what will happen to you when you get there. Others who are far more knowledgeable about getting rid of cancer decide what to do about it, and then send you to the place where the thing they’ve decided is best for you can be done. People fuss over you, hold your hand, speak to you kindly and bring you lovely things. Even when the thing they bring you isn’t so lovely – like a not-so-nice infusion of chemotherapy – they administer it with such efficiency and confidence, you’re left feeling relieved at least some part of this horrible experience seems to be under control. When you fear your body is trying to kill you with you still in it, treatment at least feels like someone who knows what they’re doing is on your side. Thank goodness, I’m in good hands. The treatment phase can be bring its challenges, but often, it’s what happens when treatment is over which really brings home to a person with cancer exactly what the most difficult part is likely to be.
Your chemotherapy regime is over, at last. The surgery is complete, and you’ve healed well. The radiotherapy has done its job, and the side-effects have abated. You finally received that news you’ve all been waiting, praying, hoping for – the scans are clear. The counts are down. The tests are negative. As you sit opposite your specialist, and receive the wonderful news, you both smile with relief. She closes your file on the desk and folds her hands on top of it. It’s been a long road. Months, maybe even years, traipsing back to this office, back and forth to hospital, back and forth to radiology and pathology. This has become part of your life, and you’ve grown accustomed to the routine. You know people in this world now, they’ve become your friends. This doctor is perhaps even more like a friend now. You notice she is making moves like it’s time to bring this consultation to a close. “So, what’s next? When do I see you again?”
“Oh, maybe in six months? Let’s see how that goes. You can make an appointment at reception. It’s been great – now, you go and have a nice life.”
Have a nice life?
What just happened? Six months until you come back? But, what if something happens in that time, how will we know? Who will watch out for those things which could go wrong? Don’t I have to go to the chemo ward, the radiotherapy clinic again? But what about my friends there, the nurses, the clinicians? I’m not ready to leave all this – this just doesn’t feel right! Who will take care of me, watch over me? How can you just sit there and tell me to go and have a nice life?
The fact is, and you know it, these people were only in your life to help you achieve a goal – to help you get rid of cancer. They had a job to do, and they did it. The system that surrounded you was designed to help you feel safe and secure, and it did it well. While you had them around you, taking care of you, you at least felt like someone was in control, like nothing bad could happen without anyone noticing. They watched over your every blood count. They checked every lump, bump, bruise and lesion. They gave you things to take away the pain, the anxiety, the insomnia, the hunger, the thirst, the nerves and the uncertainty. And now, it seems, you’re all on your own. But despite the fact the cancer is fixed, you don’t feel fixed. The part of you that doesn’t have cancer, that never had cancer, still has what the cancer brought with it – you still have the fear, the uncertainty and the anxiety. Besides, your life – your self – is changed somehow. You know stuff. The things you didn’t think could happen happened. The world seems different now, in so many ways. How can you just go back to normal? What the hell is normal?
For many folks, the worst and most stressful part of having cancer isn’t having cancer – it’s what happens when successful cancer treatment ends. It’s that anxiety-producing “drop-off”, when the specialist gives you an all-clear and sends you back to your life again with a smile and a follow-up appointment in a few months. This gap can seem just like the edge of a cliff. What happens now? Who will be taking care of me? Who can I talk to about my fears and anxieties about the cancer returning? The post-treatment phase is being recognised more as a crucial phase of the cancer journey, and is an area where more needs to be done to help survivors feel more supported and comfortable as they navigate their “new normal”. Feeling like you can face the future with optimism and confidence is vitally important after cancer treatment, for the sake of positive relationships and self-confidence, and for just good mental health.
Feeling supported on the other side of treatment is important for other reasons. Many folks can feel reluctant to leave the environments and the routines they created whilst embedded in the cancer experience, and may even find themselves trying to re-enter the system or retain contact with health services they no longer require simply because those environments created feelings of security and safety for them. This is different from continuing to access your health practitioner, a support group, social worker or counsellor after treatment, which is entirely appropriate. It’s important for those who feel “abandoned” by their health professionals or clinical services to seek appropriate sources of psycho-social support after they leave clinical care, in order to transition back into everyday life feeling supported and validated.
For those facing the unique challenges of cancer survivorship, various support and information services are available. The Cancer Council NSW regularly holds a one-day program called Living Well After Cancer around the state, a program I highly recommend. LWAC helps participants work out where exactly they are in their cancer journey, and presents helpful strategies for moving forward. I would also recommend phoning the Cancer Council Helpline on 13 11 20 (within Australia), which is staffed by oncology nurses ready to chat about your personal concerns, and refer you to suitable support services, including its own support groups and programs.
You can also talk to your family doctor or GP about a referral to a psychologist or counsellor. Ask about the mental health scheme in your state, as some health services can refer a patient for a series of sessions with a psychologist free of charge. Please enquire about whether this is available to you.
Cancer coaching is another alternative for those transitioning from treatment back into family, work and life generally. Cancer coaching and survivorship navigation are tailored one-one-one and facilitated group programs designed to support, empower and encourage you as you journey through cancer and treatment, and beyond into survivorship. I offer a cancer coaching service you can access either face-to-face (in Newcastle, NSW) or via Skype, and I’d be more than happy to discuss what I do, and how I may be able to help you in negotiating that “drop off” post-treatment, or even your journey through the treatment phase.
You can find out more about cancer coaching by clicking here, or email me on firstname.lastname@example.org