Anita Brown has terminal Small Cell Bladder Cancer. For Urology Awarness Month she opens up about some of the lessons she's learnt thanks to bladder cancer in the hope that they might help other people with similar experiences.
Bladder Cancer sucks! Having a rare Bladder Cancer sucks even more!
I am sure at some point in your life, you will have wondered how you would cope with a “cancer diagnosis”? Let me tell you, whatever you think you would do, you won’t. It is one of the most confusing, upsetting, traumatic, emotional things that will ever happen to you.
Your mind doesn't take those words “You have cancer” in. It searches for a “comeback,” it searches for something to say, but what can you say? You will be in shock, you will wonder whether you have imagined those words. You will wonder if you will die.
Write everything you are told down because we only remember the bits we want to hear. If your Consultant allows it, record your meeting. It is amazing at how we can all hear different things whilst being at the same appointment.
You are going to hear “oh my friend had that and he/she are ok now” a lot, and I mean a lot. It is funny how once you are diagnosed, how many people know others who have the exact same cancer as you. Everyone’s bladder cancer is different, we may be on the same journey but no two people are the same so how can we expect their experience to be the same?
When you mention that you have bladder cancer, it seems to be always “played down”, almost like it isn't a “proper” cancer and that you should be thankful for this. Cancer is cancer, end of! You do have a “proper’ cancer, it has a 50% survival rate.
Having a sense of humour is essential. You need to be able to laugh at all the small moments, when the scanners breakdown, when you arrive at the wrong hospital for an appointment and for times when you feel at a loss at what to do. Laughing releases endorphins and also boosts our antibody producing cells which in turn strengthens our immune system.
Try not to overthink things. After having a meeting with your consultant your mind will replay what was said so many times, you will start to try and read between the lines of everything that was said to you, so hence why writing it down or recording it would be a good idea.
Try not to use “Dr Google”. The internet is awash with information about everything and anything, some good and some bad, some true and some not so true. You are going to want to Google everything about bladder cancer treatments, reports and statistics. Please don’t, this can give us information overload, and quite possibly the wrong information. If you do have to use the web, try sticking to well-known sites, like The Urology Foundation, NHS, Macmillan, Cancer Research, Fight Bladder Cancer, bladdercancer.net.
Nothing is set in stone, Bladder Cancer is a sneaky snake and can throw us a curve ball at any time. Try and learn to go with the flow. You may have an infection that will delay your treatment or perhaps a scan had to be cancelled. All these things affect us emotionally. You will feel that you have no control over anything in your life. Bladder cancer becomes all consuming.
Try and take some time for you and your family. Make special days out, have family meals together, go for walks and remember that you will get through this, however hard it seems. Why? Because you haven’t a choice, you are strong enough for this, you are brave enough for this, you are enough!
There are no silly questions where Bladder Cancer is concerned. Make sure you write down things you want to ask, as and when they come into your mind. Don't rely on your memory as once you are in that consulting room, all thoughts go out of the window.
Cry, scream, shout, say just how unfair it all seems. Let all those emotions out, it is far better than suppressing them. You don't have to be “brave and positive” all the time, you are allowed to ‘break down”. This isn't a common cold we are dealing with IT’S BLADDER CANCER!
Rest when you need too. You aren't going to be given a gold star for carrying on when you need to rest, so listen to your body, do as it says. Yes, we don't want to “give in” to cancer, however, we are allowed to take time and recover from our treatments.
Don’t feel guilty. If you are used to looking after everyone, it will come as a huge shock that there will be days where you can hardly look after yourself, let alone anyone else. This will lead to feelings of guilt. Guilty because someone else has had to do the washing, shopping, cooking, cleaning… please don't beat yourself up about it, you don't have to look after everyone else, look after you. I promise you that your life won’t fall apart because you haven't done the washing in a few days.
Let others help, let them cook and clean, take them up on their offers to hoover and dust. You will gain strength from resting and letting your body heal, but remember that it takes time. Be patient, every time I felt really bad, I would tell myself that everything could wait and reminded myself that “This, too, shall pass”.
I now realise that I had many issues with my bladder before Bladder Cancer. Some I put down to just being a “woman”.
Most of us ladies will have had some experience with “leakage” after childbirth and as we get older. We don't speak about these things, though. Sneezing, coughing and laughing were the biggest culprits for me. I ended up having to wear a pad, daily. We don't have to put up with this, this isn't normal. Ladies, I urge you to speak to your GP if you are struggling with incontinence issues.
I was ashamed and embarrassed. I started wearing pads at the grand old age of 37, I had accepted that this was my life now. If I needed to pee, I would need to go straight away. From the moment my brain would tell me that my bladder was full, there was no holding on till I found a loo. I never told anyone. I did my pelvic floor exercises daily and it is only now that I realise that there is help out there for this.
I also had the most unfortunate time with kidney stones. I would experience awful pain in my right kidney, like someone was putting a hot poker directly in to it. I think the stones had been growing for a while. Like most of us, I ignored it, as the odd pain here and there was manageable. To be honest I had no idea I had kidney stones.
I suffered for over 20 years with constant urine & kidneys infections, having many, many antibiotics until my body became immune to them. I tried drinking cranberry juice, taking cranberry supplements. I drank plenty of water, I wiped from front to back, back to front, drip dried, you name it I did it and yet the infections continued.
We need to pay more attention to what our kidneys and bladders are telling us, there is no reason for any of us to suffer in silence. We need to make pee, wee, urine, wiz, pee pee, slash or whatever word you use, more acceptable to speak about.
We need to share our stories of incontinence, of getting up 37 million times in the night to pee. September is Urology Awareness Month, we need to start talking about all things pee related. We need to make it “normal”, we must NOT be ashamed or embarrassed. Help is out there, you just need to ask.
So this September please share your experiences and stories using #urologyawareness. Let’s make September 2018 the month we all began to be open and honest about our peeing.
Whatever stage you are at on this journey, I wish you all the best.
You can follow Anita's journey on Facebook, Twitter, Instagram, and through her blog.
