Totally lost

Hi Mick,

Welcome too this friendly forum but sorry to hear about your diagnosis.

The early day's of being told you potentially or have cancer can be very scary. All the uncertainty and questions etc can really play heavy on our minds. I think most if not all go through this.

I know it doesn't sound like it now, but for me it got easier after the diagnosis came back and I started my treatment plan. I'm not saying it's easy, but knowing what is happening did help.

There are lot's of different treatment plans depending on your diagnosis. Mine was BCG, which is a treatment that will take over three years to complete.

I think what your consultant meant "for the foreseeable" is that you will be monitored for quite a while.

Don't be shocked if you need a second TURBT, this is very common and usually not as invasive as the first.

Thinking back to my early days I would say that I had many of the same feelings. Thinking the worst and worrying about my family, the thoughts being all consuming, so you're not alone.

This forum helped me massively in the beginning and I'm forever grateful for the support and guidance I received and still receive.

Any questions please fire away, if you just want to vent or rant or even just chat then please do. There is a vast amount of experience on here and everyone is so lovely. We've been through what you're going through so we understand.

Saying all that if you do need to reach out then Macmillan have a phone line you can call.

Wishing you all the best and please stick with us on this forum as I hope it will help you as much as it helped me.

Trevor 

Hi Mick,Welcome to our friendly group.I’m sorry you find yourself here.Getting a cancer diagnosis is a shock and you go through so many different emotions at the start.It’s common to feel lost when newly diagnosed.Once you have had your TURBT (S) and the results are back you will know what treatment is available.It feels easier mentally then when that happens.You can focus on getting better.I hope you find this group helpful and supportive.Best wishes Jane 

Hi Mickey5 

You are among friends here and we get how you feel. I'm glad you can talk to your family, that will help you a lot. When I was in your position we formed a gang of 4 and continue to support one another.in fact, all 4 of us have been through serious operations in the 3.5 years since I first arrived at the hospital's 1 stop shop review of something strange in my bladder. And so we have 'played all the roles' from patient to supporter.

In many ways the beginning of all this is by far the worst. Once you get into a treatment plan and all the medics pile in things become so busy and routines so established that there is no time to 'what if'. And the medics keep an eye on us not during treatment but for years afterwards. It's very comforting I find.

Bladder cancer is treatable and each hospital and specialist do things a bit differently but we all get to our destination in the end. And I have made many friends along the way from people I knew already who stepped up to support, through people here and the medics helping me along. No need to feel alone (unless you want to).

Good luck with what comes now. We're always here if you want to talk, it can feel easier when you don't want to upset family and friends.

All the best,

Latestart

Welcome to the group - this is a safe place to share concerns, but good that you are talking to your family too. That lost, disconnected feeling is very familiar in the situation when you have been given a diagnosis, but don't yet know what happens next. BC is a very recurrent cancer, hence long term follow up. Caught early, it's very treatable. You may be given some options - there's usually someone here who has been in the same situation and can give personal experience. Once you know a bit more, the path ahead becomes clearer and BC becomes something you fit into your life instead of all consuming. Very best wishes.

Thank you all very much for the kind words and encouragement.

These thoughts and questions led me to this forum and reading through some of the posts I realise that my feelings are not isolated, but in fact quite common. I think it is the not knowing or having any type of plan in place at the moment that is fuelling my emotions. So far I get told where to go, with which specialist, then just wait for a call or a letter. 

I very much agree that these feelings come in waves. Last night was a particular low point. But today, after reading your replies I'm in a brighter mood (even if the weather is not).