Spotlight on our supportive Bladder cancer forum ahead of Bladder Cancer Awareness Month in May

6 minute read time.
Spotlight on our supportive Bladder cancer forum ahead of Bladder Cancer Awareness Month in May

May will be Bladder cancer awareness month and there is lots of information and support available from Macmillan. Ahead of the start of the month, we are taking this opportunity to highlight some of the bladder cancer support available here on the Online Community.

We are catching up with our Bladder cancer form and sharing how the members support each other every day of the year.

If you have bladder cancer, or know someone who has, our online support group is here for you as long as you need us.

Testing, diagnosis and waiting for results

If you have been referred for further tests following signs or symptoms of bladder cancer, it can be a very worrying time. Waiting for results can often be a time when you need a lot of support, as it can be difficult to think of anything else.

Members of the bladder cancer forum understand how it feels, because they have been there themselves.

"Always an anxious time waiting for results. The not knowing and uncertainty is something we understand. Lots of support here as you go forward."

"10 years ago when I was diagnosed with MIBC I thought my world was over. The wonderful people on here guided me through some dark days and I will be eternally grateful to them. Once I got on the treatment path I went with the flow and took things one step at a time. So far so good. Lots of varying experiences here so always someone with an answer or just someone to chat to."

New to the bladder cancer forum or haven't posted yet

If you’re worried about bladder cancer, have recently been diagnosed, going through treatment or looking for support after bladder cancer, we're here for you.

We have a dedicated space 'New here, say hello'  within the bladder cancer forum where we invite you to introduce yourself so you can receive a warm welcome from other members.

 Lots of people find it can help to have a support network like the Online Community to talk openly about how you are coping and access peer support when you need it.

“Now things probably seem fuzzy and your head is spinning in all directions, and that's normal, but things will start to get on an even keel. Don't be afraid to say what you feel on here, it's not a problem, or to ask any questions, no matter how silly they may seem to you, so don't be a stranger.” Community member, Bladder cancer forum

“There is plenty of experience  here of surgery and radiotherapy and more so  feel free to ask questions.” Community member, Bladder cancer forum

Support with going through tests and treatment.

If you have a concern about a symptom or side effect, it’s always good to seek professional guidance from a healthcare 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.

If you have concerns about a catheter, bladder removal or stomas, questions as a bladder cancer patient or a family caregiver, we’re here for you. Asking questions and sharing your personal experiences can make a real difference, as it can help others to know that they’re not alone.

"Good luck with the BCG treatment , I have had 6 recently and its been ok for me. Quite a few of us on here having it at the moment, so you have lots of back up." Community member, Bladder cancer forum

"Recent TURBT  - Now the wait for the  results is probably the worse thing of the whole process and most of us have been through it, so you're not alone. Please keep coming back anytime you feel anxious, you will always get someone's ear. The initial stages are confusing, distressing and be damned right awful, but it my experience it does get better." Community member, Bladder cancer forum

 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 or going on holiday, are quite common. 

“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. Whilst 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, Bladder cancer forum

"Is there any hope that urination urgency & frequency symptoms can subside as this is proving very frustrating regarding her quality of life, particularly as she has good health otherwise outside the urination symptoms? She has a very strong aversion to wearing pads/pants or shield products  Many thanks to any wisdom you can share." Community member, 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.

"I am due to go on a long haul flight very soon and after having bladder removal surgery I am concerned about having to take intermittent catheters through airport security and generally travelling with a pouch rather than a bag,  if anyone has any advice it would be much appreciated" Community member, Ask a Nurse

Supporting someone with Bladder cancer

If you are supporting a friend or family member who has been diagnosed with Bladder cancer, you are also welcome to join the Bladder cancer forum.

"My mum is 81 and was referred for a cystoscopy early December due to not being able to urinate, she has been catheterised ever since."

“My father 83 too has had a cystoscopy last week and put forward for Turbt .. as seen abnormalities during the process much information to take all in."

Community members, Bladder cancer forum

You can also 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.

Information from Macmillan

There’s also information on the Macmillan website about bladder cancer and links to further support.

Please do use the react button on the page, or the comments section below if you would like to.

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.