How To Put Together A Great Cancer Care Team To Help Manage your Cancer

The phrase ‘life admin’ is being thrown around quite a bit in our office these days.

Taken from Elizabeth Emen’s recent book, we often find ourselves reflecting on how much strain just day to day planning and personal admin takes on our lives. This labour, however, is quadrupled when one is met with an unprecedented and difficult event such as a hard-to-treat cancer diagnosis. Suddenly, all of life’s responsibilities stay, except you must come to terms with your diagnosis, process the emotions that come with it, deal with the unfairness of it all, and chalk up a solid plan to keep parts of your life running smoothly.

Too many movies use this plot and describe it as a moment in time when the world seems to come to a halt for the patient, but that is far from true. For patients who have received a difficult cancer diagnosis, there is constant pressure to do more within a time constraint while still playing catch up with the rest of life’s chores. The kids still need to be dropped off and picked up from school. The fridge needs to be stocked weekly. The water filter needs fixing. Someone needs to follow up with the internet company. The list can go on - especially if you are a woman who shoulders much of the administrative burden of running a house. Within seconds, your life has changed, and yet nothing has paused.

At such an overwhelming time, several people from your circle may come forward and ask, ‘’how can we help’’.

Although you and your immediate family may be crumbling under pressure, you will politely say, ‘’thank you’’, and not know what to ask for. But just the way patients and families ring up the first doctor they know in their circle to leverage their expertise to get through a difficult diagnosis, patients can and should make use of the different skill sets that their friends bring to the table, in terms of helping manage their cancer care journey. At our foundation, we have long understood that it’s never one great doctor who helps a patient get through a hard-to-treat cancer diagnosis, it’s always a great cancer care team.

So how can you build a great cancer care team?

Based on our knowledge, experience and conversations with several patients and families, including experiences of fighting cancer amongst our own teammates, we have compiled this list to help you do just that:

Ring up your best pals and closest family members, and have them set up a WhatsApp (or similar) group chat for day-to-day coordination

If you have kids, especially younger kids, chances are you will be more concerned about them than even yourself after your diagnosis. This stress can impact your treatment and recovery, so it’s good to set up a chat with your closest circle of friends and family to see if they would be willing to volunteer with everyday tasks like picking and dropping off the kids, driving you to your appointments, helping with organising your files after each doctor’s visit etc. This chat can also serve as a good update for those closest to you, so they can always keep a tab on your progress, on what you need etc.

A financial analyst/account manager can help you more than you think

Did you ever make fun of your banker friend for not having a life outside work? Well, it’s time to respect the hours they put in to hone their financial skills and put them to use. Financing treatments, especially if private doctor visits and treatments are involved, can be quite expensive. Losing an income or more in the family as a result of the diagnosis is a very real possibility. During these times, a friend or family member with a good financial background can help you understand the logistics of managing your finances during the course of the treatment. Is there a loan you can apply for? What would that entail? What are the risks involved with remortgaging your house if that’s what you’re leaning towards? What saving funds can you tap into? Is there a way to offset some of these costs? As emotional as a patient’s journey can be, the decisions must also take into account the financial repercussions of each step, so the patient is truly aware of not just the medical risks of a treatment but also financial ones.

Find a coach or a patient navigator who can help you filter out the mountain of information coming at you

We are well aware that not everyone will have all of these contacts in their network. Having had about 30 years of experience with helping cancer patients navigate their treatment journey, we can say with surety that getting a navigator or coach can be of great help. This has also been stressed time and again by our patients and their carers in our focus group and feedback discussions. When you’re dealing with a cancer diagnosis and especially a difficult one, people will come forward with all kinds of advice. ‘’My son’s girlfriend tried this tea and it worked so well for her..’’, ‘Have you tried seeing Dr. X..we’ve heard she’s great, even though you’d have to travel to Manchester to see her..’’. Not all advice is bad. None, if any are ill-intentioned, but many are not of use to you. They clog your brain and suddenly you find yourself more overwhelmed than you already are. A trained coach and/or a cancer patient navigator can greatly help you filter through this mountain of information and streamline your to-do list. They are trained to tailor their research and services to your specific case and can do a fair bit of the research scratch work and diary keeping for you. They can consolidate data on doctors, specialists, treatment centres etc., and can help you with something as seemingly simple, but cumbersome as getting everyone on your team to meet and communicate on the same platform. After having fought stage IV Brain Cancer, our Patient Navigation Lead set up a platform called ACT Above and Beyond to help patients access and navigate all kinds of cancer treatments across the UK and Europe. A service like this can do a lot of the weightlifting for you as they can put you in touch with top treatment centres, break down medical terminologies to help you understand your condition and all the options available, as well as assist you with doing the cost-benefit analysis of a particular treatment and its overall impact on your quality-of-life outcome. Getting a coach/navigation expert can save you time, effort, energy, and money - all of which are crucial to preserve throughout your cancer care journey.

Know someone with sound legal knowledge? Get them on your team.

A lot of medical language around difficult diagnoses involves legal language around consent etc. To understand the full scope of the risks that you’re undertaking, it’s helpful to have someone who can decipher legal jargon and can break it down to you and your family in simpler words. This helps greatly with making clear and informed decisions.

That friend who works in charity and fundraising..it’s a good time to ping them.

You would never think that the one friend who’s after your money for their charity and sends out beautiful looking fundraising campaigns right around the holidays would ever be of use to you. But their skills become ever so important when dealing with something as complex as raising funds for your cancer care journey. People with fundraising experience can be a great addition to your team, as they can help you design your own fundraising campaign, connect you to donors, scout for community resources, set up campaign pages for you, and help manage the funds that you raise. These are probably the most resourceful and empathetic of all your friends and supporters, so don’t be shy to shoot them a message!

When you are hit with something as unprecedented as a difficult cancer diagnosis, life can suddenly seem very isolating.

Nobody, but you and perhaps your family can truly understand what you’re going through. However, this shouldn’t and needn’t be a journey that you undertake alone. There is no harm in reaching out for help, especially when that request can be specific and clearly defined.

Together we can do so much!

Shivani Mishra

Shivani is a Founding Member and Project Coordinator for ACT for Cancer Foundation, where she champions the organization's core mission of making quality and innovative cancer care available to all patients, despite their post-code privileges. Shivani holds an M.Sc. From the University of Oxford, and a BA in Political Science from New York University.

www.actforcancer.org.uk/

Further reading

Six tips to help you talk about your cancer

Trying to Find Work With A Cancer Diagnosis? Astriid Can Help.

Cancer Caregivers Need To Take Care Of Themselves Too!

Beware And Be Aware – Cancer Is Not Warfare