With May being Bladder cancer awareness month, we thought we would catch up with our Bladder cancer form to see what questions have been asked recently, and what experiences have been shared. If you are affected by bladder cancer, this blog is a snapshot of the support you can find by joining the bladder cancer forum.
Reading about the lived experiences of others, and what their treatment decisions are can provide lots of reassurance and comfort. The power of peer support can help you to feel less alone when processing a cancer diagnosis.
One member recently posted the following after having surgery:
After receiving some supportive and reassuring replies, they then posted again to say: Click here to read the whole discussion thread and join in the conversation.
It’s natural to feel anxious when waiting for test results, and more information about your treatment plan. It’s something our ‘Anxiety and Cancer’ blog explores in more detail. Having a place like the Online Community to talk openly about how you are coping and access peer support when you need it can help.
One member recently posted:
There were some lovely replies which offered reassurance and understanding. If you are coping with a lot of emotions just now and need a place to talk, you are welcome to start a discussion of your own. I am sure members of the group will be close by to offer some support like these comments.
If you have a concern about a symptom or side effect, it’s always good to seek professional guidance from a medical professional. As the Online Community can be accessed 24/7, you can log in to ask others how they managed side effects or read discussions which share coping strategies.
Sharing personal experiences can be life-changing and we see the impact this has every day in the Bladder cancer forum.
Below is one of the replies and you can click here to see more supportive responses.
Lots of people turn to the members of the Bladder cancer forum when they need guidance with practical issues. Hearing other people's coping strategies and tips can be useful. Discussion topics such as coping with side effects of treatment like incontinence, and other practical issues such as going back to work, are quite common. There's help available and hopefully you'll find reading these posts helpful.
“I had a TURBT for the second time just over a week ago for the removal of a tumour which had returned after only 3 months. Since then I have had a very weak urinary stream and a degree of incontinence in terms of leakage. Whist this is manageable with pads I didn’t experience this after my first TURBT and was wondering if this is a normal side effect of TURBT and if so is it temporary”.
Community member, ‘Urinary incontinence after turbt’ discussion thread, Bladder cancer forum
If you need some clinical guidance and trusted cancer information, why not post a question in our Ask an Expert section. Our Nurses, Support advisers and Money and work teams are there to help for as long as you need them.
There’s also information on the Macmillan website about bladder cancer and its potential side effects.
If you are supporting a friend or family member who has been diagnosed with Bladder cancer, you may find it helpful to join the Bladder cancer forum. Here you can post questions about their diagnosis and treatment like these members have.
“Dad has locally advanced bladder cancer, had a TURBT last autumn and staging was pT2 / grade 3 TURBT (eek). Has been losing a lot of weight (lost 2 stone) and started having falls, was admitted to hospital on a follow-up appointment to a rehabilitation ward as had UTI and now showing signs of dementia, sadly.
Dad is due to receive palliative radiotherapy and is being discharged for downstairs living at home with a full care package... it's all been so sudden since christmas and incredibly stressful.”
Community member, ‘Hi dad diagnosed with bladder cancer last autumn, introductions’ discussion thread, Bladder cancer forum
If you are looking to connect with other carers, friends and family who are going through something similar, our Carer’s only and Family and friends forum are good places for you to join. There are lots of discussions about the emotional and practical impact supporting someone with cancer can cause.
If you are affected by Bladder cancer why not join our Bladder cancer forum and introduce yourself. If you need any help using the site, please get in touch with the Online Community team or visit our Help pages. We are happy to help you navigate the site and find the help you are looking for.
