As I begin writing this page, it has been exactly 21 days since I received that phonecall from my GP. That means, of course, that I’m hardly a ‘cancer expert’ yet – but on the flip side it presents me with the opportunity to basically live-blog my experiences and share my learnings along the way.
By nature I’m a researcher and organiser, so of course I immersed myself in information almost immediately after receiving my diagnosis. The result? Below is a continually-updated breakdown of some top tips that have helped me to process and prepare for my upcoming slog with cancer.
Don’t Go Google Mad: Easier said than done, I know. When you’re first presented with a cancer diagnosis it’s near impossible to avoid trawling the internet for facts and figures relating to your condition; but take a step back. There are a lot of dodgy sites out there with misinformation and lies that target vulnerable and scared folks like us.
Instead, and if you are able to, I would advise nominating a loved one as your Google Fu expert. Let them do the initial research and report back to you with relevant information. You can ask them to research specific questions or issues without having to deal with some of the absolute bollocks you can find online.
If you do want to do some of your own initial research (and who would blame you?) then I strongly recommend sticking with legitimate and peer-reviewed sites and organisations. I’ve started compiling a list of useful organisations and support groups here.
Get Organised Early: I honestly didn’t realise quite how tiring it would be just staying on top of all of the admin work that comes hand in hand with a cancer diagnosis. From the endless hospital appointments through to remembering to take my daily regime of pills, cancer ‘life admin’ has become a part-time job in itself.
A few things which I have found invaluable to staying organised and sane are:
- A Shared Google Docs Spreadsheet which my family and medical team have joint access to. I use this to list any upcoming medical appointments (including date, time, location, contact, reason and notes).
- A Big Ol’ Ringbinder to store all medical letters and documentation, as well as all contact info for my medical team. These are kept in chronological order for the moment, but that may be updated.
- An Ongoing List of Questions on my phone, because I’ve found that I can be doing anything and a query will pop up in my mind. If I don’t write it down immediately I tend to forget it, and so would never remember to ask my Nurse Specialist or whoever next time I saw them were it not for my list!
- An Ongoing To Do List on my phone, which I have shared with my partner and family in case they are able to assist me with any of the items on there. I’m acutely aware that once my chemotherapy starts I might not have the energy to tackle any unfinished business, so getting on top of this before I start is really important to me.
- Apply for your NHS Medical Exemption Certificate, which entitles you to free NHS prescriptions as someone with cancer. I filled in a form at my local Macmillan Information Centre, and they helpfully dealt with the rest of it!
- Putting Together a ‘Chemo Box’ before starting chemotherapy, which I’ve written about in this post here.
Set Boundaries and Expectations from the start (and let people know these may change). If your experience is anything like mine, it will surprise you how many ‘stakeholders’ there are in your diagnosis. Family, partner, friends, medical staff, employers, colleagues, social media followers (!); you name them, and they probably factor in somehow.
Making the decisions about who to tell and when to tell them is a highly personal issue, and one which I’ve lightly touched upon in my own blogging.
In my experience it’s best to tell your close loved ones as soon as you even have a potential cancer diagnosis as they can provide emotional and practical support right from the start. As for work, I didn’t have much of a choice; I received my first ‘it could be cancer’ phonecall whilst in the office and broke down crying, so there was no hiding it. Luckily for me my employer is very understanding (and I happen to be an Equality Officer, so am well versed in the laws protecting cancer patient rights at work).
Who, how and when you tell is up to you, but when you do decide to open up about your diagnosis be prepared to let people know what they can do to help, and what you’re comfortable with. This can be anything from (and I speak from personal experience here) “please don’t come round for the forseeable future because you have a cat, and I have allergies – once chemotherapy starts my immune system won’t be able to cope well with that!” and “it would help me to have a fortnightly phonecall with work” through to “why yes, salted caramel IS my favourite type of cake, and I DO love receiving letters and cards thanks for asking!“.
Find Others Like You: No one will ever truly understand what it’s like on an individual level to receive a cancer diagnosis unless they’ve dealt with their own – and even then, it’s such a personal experience. That’s why I’ve found joining Facebook groups run by organisations such as Shine Cancer Support and Trekstock so handy. Members are able to post about their experiences, give advice, ask questions and vent to others who understand.
I’ve also begun following other cancer fighters and survivors on Twitter and Instagram, and made a few new friends along the way. Just search for cancer-related hashtags (such as #FuckCancer, #CancerFighter, #CancerSucks and other cancer-specific hashtags such as #Lymphomaniac) to start discovering the wide ranging and hugely supportive community.