So, you’ve just been diagnosed with bladder cancer - what’s next?
Firstly, take a big deep breath. Aside from the deaths of people you know and love, this will probably be the most devastating news you will ever hear in your life.
When you’re told you have bladder cancer, how do you cope? For me, it was one of the most surreal moments of my life. I remember watching the consultant’s mouth as those words came out and then blocking the rest of the conversation.
I guess there is no easy way to say it. What was worse was yet to come.
The nurse ushered us into a room and told us that we should be “happy it’s only bladder cancer” and that it was the easiest cancer to treat. This may be true, but it is also the cancer that cost the NHS the most amount of money on a yearly basis due to its high rate of recurrence.
Whether you have BCG as a treatment or chemotherapy, either directly into the bladder or via your veins, it is still cancer that they are treating and it is going to mess with your head… BIG TIME!
Learning how to cope for those first few months is so important. Going with the flow helps.
Try not to get fixated on a ‘plan’ as cancer doesn't always do what it’s meant to do and will throw in spanner into the works just to keep you on your toes. Feeling overwhelmed? Of course, you will be, it’s like a rollercoaster ride. One minute you can be calm as anything and the next you’re like a deranged human being, sobbing and crying and wondering why this happened to you. There are no answers to that question so please don't beat yourself up about it. You have bladder cancer and that’s all you need to know. Take the pressure off yourself – don’t try to find the answer to the ‘why?’ question. There is no rhyme or reason when it comes to cancer.
Despite bladder cancer being played down and considered ‘not a proper cancer’ I can tell you none of that matters. It IS cancer and it will change your life.
You are going to wake up in the early hours of the morning and lie awake worrying, your mind will be working overtime with all the ‘what ifs’ - again none of that matters. ‘What ifs’ won’t help you. It’s going to take time for you to process everything that’s happening to you. Take your time and deal with it as best you can.
You will wonder if you will die, that’s only natural, and whilst bladder cancer has a good survival rate, you may end up bladder-less and your life will still change forever.
It’s such a huge thing in the ‘cancer club’ when you are first diagnosed to “be brave” and “stay positive.” Please don't think you have to.
There is enough pressure on you right now to make it through the day. Never mind the whole treatment plan. Being told those things, makes us feel ashamed when have down days or are feeling sorry for ourselves and that is just downright terrible because if you can’t feel sorry for yourself or have a down day when you have cancer, WHEN can you?
So, do what you want, when you want. If you want to cry and scream and say just how unfair it is, then do it! Keeping that bottled up won’t help. I spent the first year of my diagnosis being ‘extra nice’ to my family and friends. Trying to give them happy and positive memories of me (I was meant to die by the end of 2016). I finally cracked and blew like an atomic bomb! All the things that I’d held inside for so long; my fears, my regrets, my wishes, my anger at being diagnosed with a cancer that others don't recognise as a ‘proper cancer’, it all just came pouring out.
Anita’s Top Tips for Dealing with a Bladder Cancer Diagnosis.
1. Give deep breathing exercises a go:
I tried deep breathing exercises for the moments where I felt I couldn't breathe, and they helped, only momentarily but they helped.
Try breathing in through your nose for the count of four, then hold that breath for the count of seven and release it through your mouth, for the count of eight. Do this a few times and you will begin to feel a little more relaxed and able to cope with things (failing that there is always Vodka).
2. Get an A4 folder to put all your hospital letters in:
I have my folder with my named consultants on the index card, that way if there ever is a query or I need to check things, I will be able to find what I need straight away.
3. Ask to record the meetings with your consultant:
You will be amazed at what you don't remember or what you mishear. My husband and I would be at the same appointment and both come out, having heard different things.
4. Prosecco and cake make dealing with a diagnosis a little better!
Just make sure you have some hangover cures around. Sometimes I think we need to break down and accept what’s happening to us. It’s hard but you will deal with it in your own way. Whether that’s crying your eyes out for days or putting on those big girl pants (or big boy pants) and just getting on with it.
5. Take notes…
I know that everyone says this, but make a note of the things you want to ask as it’s all too easy to forget what you want to say. Having said that I never remembered to take the list with me, so it didn't help! In all seriousness though, there are no ‘stupid questions’ when it comes to bladder cancer, so feel free to ask your consultant anything.
Being informed about your treatment options and plans is a huge thing and you need to be on top of it. Your life will feel like it’s spiralling out of control, so YOU need to be in charge of YOUR treatment plan. This will help, it will feel like you still maintain a bit of ‘control’ over your life.
6. Find a support group or online forum.
It does help to be able to speak to people who know exactly how you are feeling or near enough - everyone’s journey is different. This is coming from the most stubborn person in the whole world when it comes to pretending to be fine and not needing any help.
Sometimes just having someone to listen who can relate to how you are feeling is all it takes to feel calmer. Someone who knows exactly how the mind can wander and blow everything out of proportion in less than five seconds. Someone who can empathise with the way you are feeling. Someone who can understand the lying in bed at 2am planning your own funeral. Someone who knows those fears, hopes and wishes.
I love the human spirit. We can go through so much trauma in our lives and still carry on despite of everything around us. We do this because we can, because we have to carry on. Life doesn't just stop with a cancer diagnosis.
7. Find something to keep your mind occupied.
You need to focus on something other than your cancer diagnosis. You will notice that ‘cancer’ is suddenly everywhere. The day after my diagnosis I went food shopping, and blow me down they had changed all their bags for life into breast cancer bags.
It felt like I couldn't get away from it. Bloomin' cancer was everywhere. You really do feel you are in this cancer bubble, where life goes on for everyone else but you. And all that people will want to talk about is you and your cancer. It’s nice they’re concerned but you do want normal conversation still.
You may find you have no attention span for anything, and you may start losing interest in what used to be your favourite things.
If this happens please don't worry, but go and have a chat with your GP as you may experience depression, it’s not uncommon. If you do feel depressed, and let’s face it, you are entitled to, please ask for help. I know that this is difficult (if you are anything like me) and that having to admit you can’t cope with a situation is really hard because it feels like you are failing at life, but you aren’t. Let me tell you, you are NOT failing in any way shape or form. Having a cancer diagnosis is one of the hardest things I have ever experienced and I’m still living with it now. There are a range of things that can be done to support and help you through this awful time.
There are talking therapies where you can speak to a therapist who will be able to help. You can do this face to face, on the phone or even via a computer nowadays (technology is marvellous). Or you may even need some medication to help you get through. Again, please don't be hard on yourself, even the strongest person can crack and break when overloaded with emotional and physical issues.
Lastly, I just want to say to you that however you deal with a bladder cancer diagnosis is up to you.
You deal with it as you can and however you can. You WILL get through it, the tears will stop, the anger will fade and it soon becomes just another part of your life story, a huge horrible part.