What to do after a cancer diagnosis
They’re the words no one wants to hear. And yet, around 1,000 people every day in the UK are told they have cancer.
One woman who knows all-too well how it feels to be given a cancer diagnosis is Bami Adenipekun. Not only has she supported her mother through their cancer journeys, but she was diagnosed with breast cancer herself.
Today Bami is on mission to give those impacted by cancer the tools to thrive after diagnosis through Inspired To Soar.
We asked Bami to share her wisdom and experience for anyone who receives a cancer diagnosis – and their loved ones. Here’s her advice for what to do in the days and weeks after you’ve been given a diagnosis.
What to do after a cancer diagnosis
Sitting in the hospital room, hearing the words, “You have cancer” is a bombshell that blows life apart as you previously knew it. And unfortunately, this doesn’t affect just you – it can be just as devastating for your loved ones too.
I should know, having been the daughter and sister of women diagnosed with cancer, and breast cancer patient myself.
According to Cancer Research UK, every two minutes someone in the UK is being diagnosed with cancer.
So first of all, you need to know that you are not alone in hearing these words. Over the course of their lifetime, most people would know someone who has been paid a rude, unwanted visit by the ‘rogue’ (that’s what I call cancer due to its devastating, unpredictable impact).
The Covid-19 pandemic has hit cancer services particularly hard, resulting in the cancellation of treatments as well as screening services.
There is a lot of work being done currently to address the backlog. However, the dire consequences may have compounded stress for you and your loved ones with respect to disease progression as well as impact on prognosis.
In the midst of all this however, you are not powerless – whether you are the patient or loved one. Whilst the cancer diagnosis in itself might be out of your control, how you respond is solely your choice. You might have heard that the quote: “Life is 10% what happens to you and 90% how you react to it” – Charles R Swindoll.
A proactive and positive response is within your reach. Here are a few pointers to get you on the right track on this cancer new normal journey.
Dealing with information overload
At the point of diagnosis and the immediate aftermath, you are bombarded with lots of information and might feel under pressure to make life-changing decisions very quickly.
You often have a lot to process within a short space of time, this coupled with the shock of diagnosis can lead to you agreeing to something that you later regret.
An example can be something as important as whether to have a full mastectomy or lumpectomy. The former is the total removal of the breast whilst the latter involves taking out the lump/affected part of the breast only. Everyone’s case is different so what seems best for the majority of patients might be totally unsuitable for you.
This is your life and health – you can ask for time to process the information given so that you can decide what’s best for you personally. It doesn’t matter what the prognosis is, asking for half-hour, an hour or a couple of days (depending on individual circumstances) to think through your options is totally acceptable.
As a patient, you aren’t a passive recipient of all that’s thrown at you. Don’t let cancer turn you into a victim; you can choose to be a victor.
Getting support through treatment
As the treatment machine gets underway, your patient experience would look different to what it might have been pre-Covid-19.
In these days of social distancing, where you might not be allowed the physical company of loved ones, it is crucial that you communicate openly and regularly with your support system – your loved ones.
For example, a pep talk from you brother, best friend or mum before going in for treatment can lift up your spirits when you need it.
On the other hand, if you are far away from loved ones, don’t be afraid or too proud to speak to your medical team. Dealing with isolation on top of your diagnosis is not a good idea at all. This might be as simple as asking the nurse if someone can come to sit with you for the first few minutes of chemotherapy because you are scared.
Yes, staff are very busy, but they understand that cancer treatment can be a daunting process for most people. That doesn’t make you weak.
It is likely that you will forget something during your appointment. So write down your questions as you remember them, enlist the help of loved ones for this as they might think of practical stuff that you don’t. When you see your medical team, let them know that you have a list of questions to ask.
May I point out though that not all questions would be addressed in one appointment, so your wanting to know where you would be in 15 years might be a tad unrealistic.
Instead, try to tailor your questions to the stage you’re at and the specialist you are seeing. For example, during my hospital treatment, I had a list for my plastic surgeon and a different one for the oncologist.
Nutrition and exercise
This is a big topic that is often subject to misinterpretation and misinformation. It is widely accepted that the right nutrition and physical exercise are essential components of wellbeing.
After diagnosis, it is more critical than ever to pay attention to this aspect of your health. As tempting as it is to eat whatever you want all the time, if your diet is high in processed fats and sugars; that would not serve you well in the long-term.
Do your research about the kinds of food that would work best for you. Don’t get overwhelmed by all the information out there, stick to 3-4 trusted authorities on nutrition and cancer.
If you decide to make healthier lifestyle choices, carrying your loved ones along gives you a greater chance of sticking with the changes in the long term.
For example, if you are a parent with younger children and you want to eat more vegetables during treatment and beyond, get them on board by making it fun. It can be something as simple as telling them to remind you to put a good variety in multiple colours on your plate. Don’t forget to tell them why it is matters to you.
Mental and emotional wellbeing
It doesn’t matter how strong you are, your mental and emotional health would take a battering in the after diagnosis. This applies whether you are the patient or loved one.
It is therefore important that you find a safe space to talk and process what you are going through. For some, that might involve friends or family members who are not directly impacted. For most however, it involves professionals who are trained to listen.
Don’t let pride or shame keep you from getting help whenever you need it. That’s a sign of strength not weakness. Having therapy has been one of the best things I have done for my mental wellbeing since diagnosis.
In the aftermath of diagnosis, you would go through a gamut of emotions. The worst thing you can do is to suppress them. For the sake of your wellbeing, express your feelings and deal with them in a positive way.
One of the best tools for that is journaling. This doesn’t have to be with pen and paper, you can use your phone. There are free notepad apps that you can use and email to yourself to ensure you don’t lose your entries. There are also voice recorders if you prefer to say things out loud.
Other tools include: meditation, visualisation and physical activity to name a few. The most important thing is to start with a couple of things and add to them as you progress. You would begin to see what works best for you from time to time.
I am still on medication for breast cancer so I can tell you that there are times when having a long bath with my favourite music playing is the right antidote for stress. At other times, it can be a nap at lunchtime. Do you without any apologies.
As a loved one, the biggest gift you can give a cancer patient is that of being fully present. By this I mean actively listening to their questions or concerns so that you do what you can.
Whether this involves making them laugh on the phone or getting their favourite snack; thoughtful actions go a long way. However, it is important that you look after your own wellbeing too.
Risk of survival mode
Given the drastic life change that cancer diagnosis brings, there is a myriad of practical stuff to attend to. You can get busy with it al that if care is not taken, you slip into survival mode, merely existing from one day to the next.
Life as you planned it has flown out of the window and you are left with what you see as a patched-up one that you have done your best to put together. On the outside, it looks like you have bounced back really well but deep down you know you aren’t living life to the full.
You might be secretly mourning the life you lost and feeling stuck in the one that’s not of your choosing. Disappointment about this can leave you despairing that life can be fulfilling and joyful again. This is a snippet of what living in survival mode is about.
I can assure you that having lost both my sister and mum to beast cancer as well as being a patient myself – your best days are ahead of you not behind you.
This was what led to writing my first book: Navigating Your New Normal: A Road Map For Life Fulfilment After Trauma.
To find out more about how to know you are merely existing as well as practical tips for moving towards thriving, you can subscribe to my Be Inspired Newsletter. You will receive a free resource that helps you identify whether you are in survival mode and what you can do about it.
Bami Adenipekun is an author, researcher, trauma coach, speaker and founder of Inspired To Soar. Her mission is to give those impacted by cancer the tools to thrive after diagnosis.