Dear Newly Diagnosed Bladder Cancer Patients

Ok, so you have just found out you have bladder cancer. Just breathe.

Hi, I am Anita and I just wanted to say I know how you must be feeling as I have been there too. I thought it was the worst day ever. I want you to know that you can and will get through this sh*tty time.

This may be the worst thing imaginable that has ever happened to you - it was for me.

Newly diagnosed with bladder cancer

It's flipping terrifying! You are in shock, you are frightened, anxious and so much more. Are you wondering if you heard the consultant correctly or did your mind instantly shut down? Or was it racing around 100 miles a minute? Were you just frozen to the spot, wondering what the hell happens now?

You have got this! Whether you think you have or not. Do you know why I know that? It's because you have no other choice.

You are going to need help

Your bladder cancer isn't going to go away on its own. You are going to need help. But don't worry about that right now. The experts will put a plan together, with your permission and they will show you the best way to fight this awful disease.

I am sorry that there isn't a magical way to take away all of your pain and anguish right now. You are going to have to face all those feelings and thoughts that are on this emotional rollercoaster, as it is referred to because it is here to stay.

Grappling with difficult facts

You will have to ride out the proverbial storm but you are going to be okay. Well, maybe you will or maybe you won't. None of us have a crystal ball and we can't foresee the future. It's hard grappling with that fact!

You wonder if you are going to die and if you are just how much time do you have left? Also, just for the hell of it, you may even wonder how it feels to die. That's a shocker, isn't it?  Will you die in a hospital or at home, surrounded by your family?

All of this and more passes through our minds.

It's all normal

Your mind is all over the place and nothing makes sense anymore. All you know is that there are thousands of thoughts overwhelming you, at any one given moment. One minute you can be a cool as a cucumber and the next moment you are having a breakdown in a food shop.

Those first few weeks are some of the hardest weeks I have ever lived. It is waiting for your diagnosis and finding out what stage and grade you are in.

You will be sent to get scans and blood tests. You may feel like your life isn't your own anymore and that you have no control over what happens. Just hang in there and go with the flow.

You are in safe hands

You may feel like your life isn't your own anymore and that you have no control over what happens. You are going to meet lots of different nurses, doctors, and consultants whilst enduring treatment. They are on your side. They are there for you.

And please don't worry if you break down in front of them. They have supported other patients and can empathize with how you are feeling.

The unknown is frightening, be careful where you look

Yes, the above statement is true however there are so many websites out there giving false information and statistics. Please don't get yourself too far down that rabbit hole and always ask your consultant for verified websites and places of information.

Don't get too consumed with statistics either. According to the statistics on small cell bladder cancer, I had a 0.3 percent chance of making it a year and here I am 5 years later, alive and okay.

Coping with a bladder cancer diagnosis

There is no right or wrong way to deal with such devastating news. Perhaps you just want to sleep and block the world out or maybe you find comfort in speaking to others?

I did both, at different times. In the beginning, I wanted to get everything out there. I felt safe and protected with people knowing what was going on and it was their support that got me through one of the worst times of my life.

Coping with a bladder cancer diagnosis and stigma

Being diagnosed with any type of cancer is life-changing enough, however, when you are diagnosed with bladder cancer there seems to be a bit more of a stigma. Maybe that's to do with the fact that it involves our private bits and pee?

We need to make speaking about bowel or bladder problems normal.

Above all, please know that you are not alone. You don't have to face this alone either. Coping with a bladder cancer diagnosis is difficult - you will get through this. Love and hugs.