Now I’m nearly fifteen months on from my secondary diagnosis, the shock has worn off a little and I’ve adjusted to yet another new normal-which is basically leading as normal a life as possible with this poxy disease.
I thought I’d compile a list of things that have really helped me along the way. Without the list, perhaps I’d not be here today, who knows? But one thing’s for sure. This stage four is a different ball game entirely to the days when we were told we’d need a mastectomy and two different chemos. Now things just got a lot more serious. Anyway without further ado…
A little knowledge IS NOT a dangerous thing:
Having a basic understanding of your cancer is important. Where your cancer had spread to, what type of cancer you have? (Some cancers change type once they metastasise, always make sure they biopsy mets). Now knowing your prognosis is an individual thing. I would advise against. One reason being, it’s impossible to predict in most cases, and if they underestimate, you’re going to be left worrying and scared, and you don’t need to feel like that. Nobody does.
When you feel poorly take it easy. When you have good days/weeks/months bloody go for it!
Now nobody would be surprised if you felt down or depressed and shut yourself away from the world. I flit between wanting to talk to everyone about how I’m feeling to not wanting to see anyone on a regular basis. One thing I’ve learned is to let my body rest when I’m not feeling well, but to live life to the max when I’m feeling well. Because I conserve energy when I’m not feeling my best, I’ve been able to travel around the world to all these amazing places. In Mexico I was swimming with dolphins in the sea and zip lining across lagoons! I had so much energy, but it’s very much give and take with this cancer. Many of us have to earn the good times with difficult times, and that can be frustrating that we can’t do what we want all the time.
You must be your own advocate (or have a ballsy person who understands your disease who’s willing to stand up to doctors if necessary).
Always research treatment options for your cancer type because it’s possible you aren’t getting the gold standard. I’ve recommended my hospital to at least three people who were let down by their hospitals- long waiting times, poor oncologists who weren’t empathetic etc… You have the right to be treated at a hospital of your choice, so do your research and find one with a good reputation or from word of mouth. If you’re having treatment and you know there are other treatment options, or better options, ask about them. Fight for what you want. It’s your life and the person who cares most about your cancer and your life is not the doctors, it should be YOU!
Forgive people who say silly things:
People will say daft things to you which can be insensitive, but most people do mean well or they are just not sure what they should say to you. ” You don’t deserve this” is a favourite of mine. It doesn’t make me feel any better, and who actually does deserve to have incurable cancer? Also people will pop up out of the blue with advice on dodgy cures. No matter how good they sound please speak to your oncologist first before taking anything as it may intervene with your treatment.
People will moan about their jobs, the weather, always being tired and it will really grate on you sometimes. But try to remember life before cancer-most of us moaned about trivial things too. It’s hard to accept but people’s lives go on around us regardless of our cancers, and we must respect that. It’s so much easier to let things go-don’t stress the small stuff. Have forgiveness in your heart. It’s always preferable to anger.
Accept that it’s not fair but it’s your reality:
For me this is vital. Having incurable cancer at a young age isn’t fair and it’s totally ok to think and say that out loud. But accepting that there’s not much you can do about your reality only have faith and live a life you can be proud of; having as much fun as you can along the way is doable (I promise)… x