Diagnosis can be Tough - Bladder Cancer
A little about Me
My name is Anita, I was diagnosed with small cell bladder cancer back in 2016, when I was 45. Despite having ongoing UTIs (Urinary Tract Infections) for over 20 years, I was one of the 50% of people diagnosed with it, who had never heard of bladder cancer.
I had over two decades of living with constant UTIs and never was it ever discussed that these infections could be a precursor to something serious but since being diagnosed I have discovered that if you have kidneys stones, bladder stones or ongoing UTIs it could lead to a diagnosis of bladder cancer.
By the time it was discovered, it had spread throughout my body, my lymph nodes, my liver and bones. My prognosis was poor, very poor. I was given palliative chemotherapy and radiotherapy to help ease my symptoms and to give me time to say my goodbyes and get my affairs in order.
After chemotherapy and radiotherapy, I was told to go and live the rest of my life however, due to the pain that the tumour was creating in my bladder I decided to have a radical cystectomy in 2018. This, I believe, has saved my life.
We all believe that we are invincible, it is only when we are diagnosed with a life-threatening disease or illness that we realise we are not. Life is incredibly precious.
If you are reading this…
You may have typed ‘What are bladder cancer symptoms?’ into a search engine which may mean that you are having symptoms, or you have just been told that you have bladder cancer.
Firstly, let me say just how very sorry I am that you find yourself in this situation. I have been here too, and it is utterly devastating how one minute you are plodding along with your life and the next, you hear those ominous words “You have bladder cancer”. Your whole life changes in an instant. You WILL get through this, I promise although there may be times when you wonder if you have the strength. You do.
Overwhelmed much?
It was so overwhelming. I remember feeling like I wasn’t there. I could see the consultant’s mouth moving but couldn’t hear the words anymore. I wanted my husband, Tim, he would know what to do. I needed to feel safe, no I wanted to feel safe. I couldn’t believe what was happening to me.
Your mind goes into overdrive, your thoughts are all over the place. Will I need chemotherapy? What is going to happen to me? And the biggie… will I die? One minute you are fine and the next minute, an overwhelming sense of fear mixed with anxiety descends upon you. Tears come and go, anger too. Why me? What did I do? Is it my fault? I never realised how many thoughts could be racing around in my head all at the same time.
This is all normal as there is no right way to respond to the worst news ever!
Do YOU! What gets you through
People will offer you all sorts of advice on how to deal with your prognosis. I remember feeling almost traumatised (I was told I would die) and immediately brought prosecco for the good, the bad and the ugly moments. Prosecco and cake, that’s what got me through those first few weeks and months, but you do you. Do the things that fill you with joy. Maybe do some Mindfulness, it helped me to calm my mind when things got really gritty and tough. Focusing on the here and now and trying hard not to focus on the future (although it can’t be helped).
Breathe…
I guess my advice would be to just “breathe”. You have just had the worst news of your life, try and take a minute to fully understand what’s going on and if you need to, cry, scream, shout as much as you want. We are always told to ‘be brave and be positive’ but it is ok to feel ‘sadness, fear, despair and anger’, I positively encourage it. They are all normal reactions to a rotten situation. However, you deal with it, is the right way for you and remember “you are stronger than you think” (Thanks Pooh Bear).
The Signs and Symptoms of Bladder Cancer
The main signs are…
• Blood in your urine
• Painful/more frequently peeing
• Back/Kidney pain
• Extreme tiredness/fatigue
• Ongoing Urine infections
Later symptoms can include bone, back and tummy pain.
If you have any of these symptoms, please go and make an appointment with your doctor, it isn’t always bladder cancer and it could turn out to be a urine infection, which can be easily treated with antibiotics. If you suffer with three or more urine infections within a six month period, I would suggest you ask to be referred to see a Urologist to find out why you keep getting them.
Be Aware
Over 600,000 people are diagnosed with bladder cancer globally1 each year and about 10,000 of those are within the UK2. It is the ninth most commonly diagnosed cancer in the world and is one of the most overlooked with perception of it being ‘an old man’s disease’.
Bladder Cancer “has the highest lifetime treatment cost per patient of all of the cancers”3 and this is due to its high recurrence.
This year’s Bladder Cancer Awareness Month is centred around being ‘unsure’ so if you are unsure whether you have any of these symptoms it is always best to get it checked out!
References
1International Agency for Research on Cancer, Bladder Cancer [website], https://www.iarc.who.int/cancer-type/bladder-cancer/, (accessed 22 April 2024).
2NHS, Bladder cancer [website], https://www.nhs.uk/conditions/bladder-cancer/, (accessed 22 April 2024).
3K. D. Sievert, B. Amend, U. Nagele, D. Schilling, J. Bedke, M. Horstmann, J. Hennenlotter, S. Kruck, and A. Stenzl, Economic aspects of bladder cancer: what are the benefits and costs?, World Journal of Urology, vol. 27, no. 3, 2009, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2694315/, (accessed 19 April 2024)
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