Can’t sleep. Worrying about the as yet unknown

Hi Kenzie,I hope you have managed to get some sleep.I’m sorry to hear your bladder was perforated.You are experiencing the horrible uncertainty stage and we have all been in your shoes and know how worrying it is.But please don’t feel guilty,its cancer and people should support you whatever grade and stage it is.I’m sure you will feel easier once you know the stage and start treatment.Everyone on here will offer advice and encouragement and it will be the same at Maggies.Love and best wishes Jane x

We all have these fears and uncertainties when first diagnosed. Even if the future contains checkups and unpleasant treatments, once you have a plan and get started, things feels more settled. When I can't sleep, I listen to speech podcasts. even listening to the same ones over and over is quite soothing and usually stops me tossing and turning and often off to sleep. Glad to hear you have found a Maggies. Never worry about your problems 'not being bad enough'. It's not a competition. Best wishes.

When I can't sleep I read on my Kindle - back-lit so I don't need a light and thus less disturbing for my husband. A good murder diverts me from thinking about anything else. Ann Cleeves is particularly effective.

Now, perhaps you might like to think about staging and grading as I do. Which is to say I ignore them. I find it difficult to understand when I hear others talk about them as it often seems people are almost bragging that their's are worse than others'.

My oncologist encouraged me in that because she says these letters and numbers are really for the use of the medics when deciding on the appropriate treatment. And, the medics' aim is to get rid of the disease (of whatever level) and help us get back to normal life.

Later, at the end of treatment, she said that even though things had  changed since diagnosis - there were some aggressive cells left after chemo - now the bladder and those cells were out  the numbers and letters  had become 'totally irrelevant'.

Also, please don't think that bladder removal is somehow bigger or more important than having BCG or other treatment. Or more harrowing. Any cancer of whatever level, invasive or not is serious. And all treatments have their tough moments. In fact for me chemo plus removal took just under 6 months. And then 3 more for immunotherapy . I know I would have found the long series of BCG much more daunting. I'm very happy with my stoma and bags. 

So you see you mustn't feel guilty at all. We all suffer from having cancer but we all support one another as equals, which benefits everybody. 

I hope you get some more sleep from now on.

All the best 

Latestart

It is alot to take in and I'm not sure for how many others, it felt like having to run after a train that has left. 

Knowledge is power and at sometimes, what we have to fight with. For whats its worth, I found it helpful to separate the things I needed to research, so I dont think about it all at once.  A separate session spent on each and writing down the questions to ask at the next appointment so I didn't have to think about them until then. Also stopping reading up / notes a few hours before bed and standing outside to clear the head. 

We're very lucky there is so much information booklets here on Macmillan, Fight Bladder Cancer and on Cancer Research websites. The is so much that you really need to pace yourself. 

Taking a partner of friend with you to the appointments is also extremely helpful. 

I hope it all goes well for you. 

Unfortunatley C is C and no cancer is irrelevant. Dont beat yourself up and stay strong.  Wishing you all the best

What a fantastic response!! 

Thank you - that's what bladder cancer has taught me