Last week I wrote about my experience of running the Moving Forward from Cancer virtual community. The community is comprised of a private Facebook group, access to coaching and support webinars with experts in their field, and unique life after cancer 1-2-1 coaching support.
When I wrote that blog, it came out as much more behind-the-scenesy than I’d imagined it would be, and I felt a distinct lack of reflection the actual cancer side of the learning!
With that, here’s what I’ve learnt about cancer in running that community.
The Big five
The main topics emerge wherever you look: work, fertility, mental health, friends and family and life after cancer in general
Let’s break these down a little, because god forbid we get the impression that it’s ‘just five’. Here’s some of the more common issues and questions:
- Can I work again?
- When will I be able to return?
- What kind of work can I do?
- What will my colleagues think of me
- How to talk to my colleague/boss
- What if I don’t want to talk about the cancer
- My boss doesn’t understand how ill I’ve been
- Am I legally covered to take sick leave (again)
- I don’t like/can’t do my job now
- I’m sure there’s more to life than my job (or work overall)
- I’m tired all the time/can’t concentrate/can’t do my work
- I have to work for financial stability
- I hate my work and want change
- I’m scared the cancer will come back
- I can’t control my anxious thoughts
- I’m angry at everyone/someone/the cancer
- Emotional resilience – I don’t feel strong, resilient or able to cope
- I seem to react strongly to everything now
- I can’t stop thinking about what’s happened
- I feel I’m about to crack
- Anxiety symptoms or diagnosis
- Depression symptoms or diagnosis
- Post traumatic Stress Disorder symptoms or diagnosis
- Coming to terms with physical and emotional changes
Family, friends and other people
- My friends/family have let me down
- They don’t understand that I’m not over it
- People say I better/well but I don’t feel it
- People keep saying upsetting/stupid things
- I don’t know what to tell people
- I want to support my friends/family/children more
- I want to help my partner
- Can I have children now?
- Can I have another/more children now?
- I can’t have children now
- What are my fertility options
- Will my body cope with more
- I can’t cope with more medical invasion
- I can’t cope with more uncertainty/loss
- We don’t have to money for IVF
- I’m scared to think about my fertility
Living post cancer
- How do I live in the present?
- What am I capable of now?
- What’s my life purpose and plan now?
- What makes me happy?
- I feel I’ve changed so much
- How can I live in a way that makes me happy now
- Change in sleep patterns – too much, too little
- Getting used to a new diet/way of eating
- Can I exercise,what can I do, and how much
- Dealing with physical and emotional body changes
- Organising day and life
- Managing and juggling time – on going appts, work, children, social life (existent?), support
- It’s come back
- I’m living with a terminal disease
The list is short, it can be extended and there are many other parts to each part too.
Every day, cancer survivors are managing and coping with all these topics swirling around their heads. Sometimes quietened and at bay, other times loud and knocking down walls to be heard.
Granted – the demographic I work with are more often than not pre-retirement age, who no doubt have significant life changes to contend with during and after cancer as a potentially life long sentence. But substitute ‘work’ for ‘retirement admin’ or similar and you’ve gotten your equivalent. We can take out fertility no doubt, but I’d hazard a guess that ‘supporting the family’ could take over it’s absence.
I desperately want to provide solutions here. I don’t want to just highlight all the difficult things cancer patients experience when they’re so called better, and not merely a ‘look at this mess’ post.
The are indeed solutions. There are services available to support some, or more, of these issues. Cancer patients more often than not do find ways around their concerns in one way or another – not always so that they’re gone but so that they might at least change.
However this doesn’t take away from the overwhelming level of complicated thoughts and decisions they are also coping and managing with at a time when they are often at their lowest ebb. It’s not for no reason that we talk of how resilient you need to be post-cancer, to even start to face one of these life changing questions.
These topics come up again and again in the moving forward group – we can’t ignore the fact that living post a cancer diagnosis is complex, and survivorship is a different world from when looking on to it versus when you’re in it.
2. Everyone has their version of moving forward
Which brings me to point number two. There is no one version of moving forward. We each have our own.
One person’s may be a measure of how much they think about their cancer experience now – the less frequent or intense showing them they are moving on.
To another, it may be the level of change they’ve put between their experience and the present, taking up new hobbies, a different job, a relocation, new friendship groups or similar, to feel that distance in another way.
To another, it is in knowing they feel emotionally resilient enough to support others with confidence in their own reflection, or even knowing it is not about their own experience any longer.
Some choose to pack it away and keep it there, others choose to talk loudly. Some want to create new things, others want the comfort of the old.
For all, their marker of moving forward is a second, unexpected but just as significant journey.
There’s no right or wrong way to move forward. There are perhaps harder and less hard ways to do it – I of course will advocate for opening up, talking where possible, taking advantage of the services available to you and using any energy you have to give yourself the internal hug you are going to need. Being gentle.
3. Time both is, and isn’t, a healer
The moving forward community range from people who are still in treatment, just come out, through to years down the line. Time absolutely does make a difference. Why? Because you naturally have other things to focus on.
When there is trauma, you can focus on very little else – you are only thinking about the next treatment, the next scan, the next time you can get out of the house. When that trauma is lessened or even gone, you can allow yourself to think about the future a little more, however scary that feels, you emerge into your life again and pick up the things you had to drop, or you pick up new things in the process.
Throughout this whole process, which I argue is years not months, you’re evidently thinking back and reflecting on the cancer experience itself. However, you’re also making room for thinking in the present and then future. As more time comes between your last difficult moment and today, you use it as evidence that you can indeed safely continue to look forward.
Of course, recurrence is a real fear and we can’t ignore that it does happen, and where it does, how does time heal anything? That is a harder one to answer.
But why does time make things harder? You’re living with a new body that you didn’t really ask for and it doesn’t always work how you’d like it to. Side effects that you were told would go don’t always, rather lingering ready to pounce in particularly vulnerable moments when you least expect or need them (recipe: vigorously mix poor sleep, something hard coming up and not eating well for your needs). Time and new experiences tell you that some things may not be as possible as you thought (e.g. having sex, having a baby, working how you want) and it takes yet more time to get around those new – and I use this word deliberately – traumas.
Thus, moving forward is a combination of both of these messy versions of time.
4. Everyone has their favourite support organisations
When I asked the moving forward community who had supported them in their cancer experience, the responses frequently contained up to three organisations – usually two charities and one NHS body or service, which I thought was really interesting. Some of those charities overlapped and were there for very clear reasons:
‘When they helped me get out of the hospital much quicker than I had been originally told’
‘For helping me find other people like me’
When they helped my family come to terms with my surgery’
‘When they referred me for psychological support when I had anxiety 2 years after treatment’
These services are providing targeted support to those who need it. Also, they are accessible – people can find them easily on social media, communicate with them and get to the right person or service quickly. The community speaks lovingly about the services, understands the significance of their presence in their own moving forward experience and their very survivorship, and frequently want to give back to support them when they possibly can.
We hear talk of not being able to find the right service when it’s needed – especially for mental health support, and that is a real danger for any population. However, if the favourites that we hold can continue to evolve and expand, or work together to signpost or even refer (where referring is a more hand-held version of signposting), finding and accessing those services when in need will become all the more easy in life after cancer.
We all do it – with other parents, colleagues, peer group, the person on the street – we can’t help ourselves. So you can imagine, when it comes to this complex health experience, what happens.
We compare diagnosis stories, treatment stories, drug side effects, reactions to difficult conversations, how it was to stop work/go back to work, whether we’ve moved forward, whether we have anxiety now, whether we perceive ourselves to be doing well, whether we are a GOOD survivor.
It’s human nature. But it’s a dangerous game.
Just as everyone is moving forward in their own way, their cancer experience (from start to ambiguous ‘end’) is theirs and theirs alone. Blogs, videos, posts, stories are all incredibly useful and cannot be underestimated in their value – especially when you find the people or voice you’ve desperately wanted to hear, or even articulate yourself.
But you are working with your unique needs now, just as you always were.
Comparing your energy levels post-cancer with a non-cancer person is pointless, just as it would have been before anyway. Comparing your diet with a group of cancer patients’ diets is useful and will provide guidance, but it is only that – guidance.
The hard part is listening to that voice that’s trying to tell you the level or extent you can do things at (and pushing it if and where you want to) and then taking action when you hear it. Because taking action on that voice is likely to bring about a whole new way of living in more alignment, not pushing and struggling but being with yourself, perhaps a calmer level of acceptance.
This doesn’t mean not striving for and achieving great things where you want to. It just means you’re moving forward in the very way and pace that’s right for you, finding your own focus in what you love and can cope with, and seeking out the right way to live for you.
And who wouldn’t want that, cancer or not?