By Sue
Being diagnosed with bladder cancer is a life-altering moment, and the journey that follows can be filled with many challenges and learning experiences. One of the practical challenges many face after a radical cystectomy (RC) is managing life with a night bag. When I had my RC six years ago, I left the hospital with supplies for my “day bag” and an abundance of information on how to use it. However, there wasn’t much guidance on what to do at night.
The Night Bag Dilemma
At first, attaching the bag seemed straightforward, but then the questions began to flood in. Should the tube go over or under the leg? Is it better to use bendy or rigid tubing? Where should I place the bag throughout the night? How should I lie in bed to ensure the bag functions correctly? How often does it need to be changed, and what’s the best way to clean it?
Learning Through Trial and Error
Of course, like any rookie, I made my fair share of errors. I’ve left the stopper open more than once, and turning over in bed has dislodged the connection at times. I’ve even learnt about “night surfing” – a term I used to describe unexpected incidents due to these mistakes. Thankfully, these incidents have become few and far between.
Finding What Works Best
Now, I have found a night bag setup that suits me perfectly – a flexible bag with a long tube. I place it under my leg and sleep on my side or my back. I meticulously check to ensure the bag is closed before I sleep, and I recheck during any night awakenings to confirm everything is secure. To clean it, I experimented with Dettol, water, and Milton, but now I use Zoflora, rinsing the bag every morning. I change my bag every 7-10 days.
The Advantages of a Night Bag
There are significant advantages to using a night bag. The relief of not having to get up during the night is immense. I almost feel smug when I hear tales of my friends’ disturbed nights! The night bag has also been a great companion on long-distance flights – it fits nicely into a bag on the floor if you get a window seat, so there’s no need to climb over other passengers. Similarly, on long car journeys, the night bag reduces anxiety, allowing us to take our time to find a service station rather than rushing to find one urgently.
Life Post-RC
Compared to life immediately before my RC, I am no longer in pain, and my anxiety has decreased over the years. I am forever grateful that the operation was a success and that by adapting and learning, life continues to improve.
Since my surgery, there has been a significant shift in how I experience daily life. I am now able to live without the constant pain that once overshadowed my every moment. This change has brought a profound sense of relief and has allowed me to accept my new circumstances more fully. Living pain-free has opened up opportunities to enjoy life’s simple pleasures again, and I cherish each day with a renewed sense of gratitude.
One of the most transformative changes has been the ability to sleep through the night without interruptions. Before my night bag, I was up several times a night, a routine that left me perpetually exhausted and strained my mood and productivity. Now, I can finally enjoy a full night’s sleep, which has significantly improved my overall health and well-being. This restorative sleep has helped me to feel more alert and energetic during the day and has been essential in my recovery and ongoing health management.
Regaining control over my body and my life has been incredibly empowering. After my diagnosis and subsequent surgery, I felt as though I had lost all control, with my body dictating what I could and couldn’t do. Now, with the right adjustments and the use of a night bag, I’ve taken back that control. This has helped to reduce my anxiety and has given me the confidence to make plans and engage in activities that I once avoided. It feels great to lead a more normal life again, making decisions based on what I want rather than being led by my condition.
Support from Fight Bladder Cancer
Fight Bladder Cancer has been instrumental in my journey, providing support in various essential ways.
From the moment I was diagnosed, Fight Bladder Cancer has been there with the vital information I needed. Their resources helped guide me through the initial days when everything seemed overwhelming. They provided clear, concise information that helped demystify my condition and the steps I needed to take, making a significant difference in how I approached my treatment and recovery.
The unwavering support I received from Fight Bladder Cancer has been a cornerstone of my journey. During my toughest times, they were there with encouragement and practical advice. This support went beyond medical facts; it was the compassionate presence that reminded me I wasn’t facing this challenge alone. Whether through direct support or connecting me with others who had similar experiences, they helped lighten the load considerably.
Over time, Fight Bladder Cancer has become more than just a charity; they are like an extended family. Their warmth and kindness have been a beacon of hope and comfort. The community they have built, of patients, survivors, and families, is a source of strength and encouragement. Knowing that there are people who understand and care, who celebrate my victories and support me through difficulties, has been incredibly reassuring and has made a huge difference in my journey.
