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Lessons I Have Learned

I have been living with terminal bladder cancer for nearly three years now. I feel so incredibly fortunate to have had this extra time; this is something we didn’t think would happen. I don’t take any day for granted now. I would like to share some advice that I feel may help you on your journey.

Staying organized

Firstly, breathe… and remember to keep breathing. Life does get overwhelming now and then, and never more so when you have hospital appointments all over the place. One thing that I have done is to have a folder, with the names of each doctor that I see, on an index separator. This way if I ever need to find a letter or blood forms, I can easily look them up. This has saved me many hours of hunting through paperwork.

Sticking to official bladder cancer websites

Try not to use Dr. Google – he is not your friend! There is so much information out there on bladder cancer, from wellbeing sites to official bladder cancer sites. Try and stick to the official sites. Don’t google statistics unless you want to give yourself a heart attack. I googled mine and it said I have a 19% chance of making it 5 years – seriously depressing. Don’t do it, step away from the computer.

A place to jot down questions

Have a little notepad in your handbag, or if you are a man, in the car? This way if you think of any questions you need to ask, you can write them down as soon as they come into your mind. Don’t rely on your memory as when you are in the doctor’s office, all thoughts go out of the window.

Also, be aware that you will all hear different things at appointments. Sometimes I would question whether my son and husband had been in the same meeting as myself. We all hear what we want to, and our minds are very clever and dismiss stuff they don’t want to deal with. So, ask if you could record the conversation for future listening. Most doctors will allow this.

There is no “right” way to cope

Remember, there is NO “right” way in which you deal and come to terms with having bladder cancer. Try not to get bogged down by the “why do I have bladder cancer?” or “what if I had done this…” It isn’t going to help you in the slightest, and it’s not going to change your situation either. You have bladder cancer, and you are going to have to deal with it. It sounds harsh, but it’s the reality of the situation.

You can deal with it however you want to, but deal with it you will. Those first few months, you will not know what has hit you. there will be scans, blood tests and appointments all over the place. You will wonder what language the nurses and doctors are speaking. If you do not understand anything, then please make sure you ask, even if it seems silly to you, there are no silly questions where cancer is concerned.

Saving your energy

Once people hear what’s happening to you, old friends and acquaintances will start coming out of the woodwork. Only let those people you want to see, come and see you. People want to make their peace, but that is their issue, not yours. If you do not feel up to seeing anyone, then stand your ground. You will need to save your energy for more important things.

Stay tuned for Part 2, where Anita shares more lessons she has learned.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The BladderCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Guy Wheatley
    6 months ago

    “Try not to use Dr. Google – he is not your friend!”
    So much wisdom in so few words.

  • Sarah Wallin moderator
    6 months ago

    @guybwheatley – Agreed! Are there any trusted bladder cancer resources that you get information from online? -Sarah (BladderCancer.net Team Member)

  • Sarah Wallin moderator
    6 months ago

    Hi @guybwheatley, that’s great that you were able to check in with your doctor about what you read online. This is a great tip, since the information you read online might not necessarily pertain to your personal situation. -Sarah (BladderCancer.net Team Member)

  • Guy Wheatley
    6 months ago

    To clarify, (Learning about cystectomy) was what I was doing, not the name of my book.

  • Guy Wheatley
    6 months ago

    The only online research I did was actually as I was sitting in the Dr. office. Dr Spinazze, who was the urologist who diagnosed me, said he was too old for surgery anymore and handed me off to Dr. Henderson. I had about an hour before I could meet with him, so I took the time to research things. The site I remember was WebMD. I describe that event in my book. (Learning about cystectomy.)
    I was terrified, but I’m glad I did. By the time Dr. Henderson came it, I had gotten over the shock and was able to ask some pertinent questions. The key for me is to always check any online claims with my doctor.
    In researching my book, I used several sites. Three in particular were WebMD, Cancer.org, and Wikipedia. Again, I used those sources more as guides for question to my doctor than final authorities.

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