High Anxiety Levels

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So I'm wide awake again at 4.30am for the second night. My anxiety levels are so high and I am unable to relax. I had a telephone call with my CNS on Tuesday to confirm that my last biopsies were negative for cancer cells, so my cancer is non muscle invasive which is great news, and I can start on BCG therapy, also great news. I don't have a start date for BCG yet Confused and now all the "what if's" are creeping in again.  Have I made the right decision with BCG? Should I have immediately opted for an RC? My reasoning at the time made sense to me, but now I'm wondering if I made the right choice. I keep thinking of this insidious growth returning. Do I carry on and put my trust in the BCG therapy? I don't want to lose my bladder yet if I don't have to. I'm just so incredibly tired and stressed with all these thoughts. How do you force your body to sleep. I'm on the sofa in the lounge having just watched Sense and Sensibility, thinking that I would have nodded off while it was on, but no!! Im still here, wide awake and frustrated Angry.

I'm sure lots of you have the same issues.  Any suggestions would be very welcome.

Ade (very tired) xx

  • Hi Furbabymama, can't offer any ideas regarding sleep but just want to say you are not alone I haven't slept a full night for a while, I either cant't get to sleep or I wake up after a couple of hours and the what ifs start again. I have just finished my first six BCG treatments with no side effects at all and after reading what some people suffer I have been very anxious that its not working for me and I should have looked into a RC more, have had a chat with my CNS who said everyone reacts diferently and not to worry but its easier said than done.Hope this has helped you a little be kind to yourself and best if luck with you treatment. Lynn x

  • I asked the Dr for some short term sleeping tablets, they gave me Zopoclone. Worked a treat used them for a few days and stopped. It’s a big decision , and I am afraid there are no simple easy answers. My view is that BCG with carful monitoring was worth a try as surgery is a major decision with its own very real risks. It’s there as a plan B if BCG does not work out.

  • Hi Granny M

    Thanks for your reply. I'm so pleased that your treatment is going well,  without any side effects. I think both our situations are very similar and you have given me more confidence in my original decision to opt for BCG. Good luck for your flexi check. Fingers crossed that it is all clear.

    Ade xx

  • Hi Leo1

    My rational mind agrees with you about BCG and regular checks. It's those horrible "what if's " that mess with my mind. Hopefully when I get a start date and actually start the BCG it will help to dispel the "what if's ". And I'll keep the sleeping tablets in mind too.

    I'm so glad that we have this forum. It is an absolute God send.

    Thank you for your reply, it's good to know that we are not alone on this journey. 

    Ade xx

  • Hi Ade, 

    Sorry to hear that you've been having some issues sleeping and with anxiety.

    The brain does go into overdrive and it's impossible to stop the thoughts, and what ifs and I'm pretty sure we've all been there. 

    I've suffered from Anxiety etc for years now and before being diagnosed so I know how crippling anxiety can be. I don't really have issues sleeping, but I found exercise helped massively. It also helps to release endorphins which reduce anxiety and stress. 

    In addition to exercise I've used breathing exercises and there are some great free apps.

    I hope you find something that works for you soon.

    Everyone is different of course, but so far I've had two TURBTS and 12bcg treatment's and so far I've had clear biopsies (last one in March).. I've put my trust in the medical experts and so far so good. I'm aware it can return but I'm taking the wins. 

    My next biopsy is on 14th June and I'm no longer worried about being knocked out etc.

    I hope you get some sleep soon, although you've probably fallen asleep reading my post as I do tend to waffle on quite a bit.

    Take care.


  • Hi furbabymama and sorry to hear of your sleepless night.

    A couple of basics, having been as far as the Addenbrookes' sleep lab with daughter.. Please ensure all your screen devices have f-lux or similar screen colour modulating app installed. This reduces the blue light as the sun sets, which reduces unwanted brain stimulation that keeps you awake. Better to try to read a book in the small hours than watch anything.

    Second, if I'm stressed and struggling, making a sloppy cereal/drink of either instant porridge oats and milk, or real oats ground in the coffee grinder and boiled up with milk, is definitely helpful. Oats have got calming properties and there's something in milk that's needed for sleep too.

    Hope these help, Denby

  • Hi Trevor

    I do stay active and busy during the day. I enjoy walking the dog and pottering round at home so I'm tired when I go to bed but I just can't stay asleep and that's whe. The what if's kick in. 

    I'll definitely try some of the breathing exercises to see if they help.

    Hopefully when I start the BCG my brain will just focus on this therapy and take the wins that I hope will come with it.

    I'm glad to hear that you are half way through now and I'll keep my fingers crossed for your biopsy in June.

    Thank you for your reply, it's good to know we are in this community together.

    Take care

    Ade xx

  • Thank you for you wise words Denby,

    I do enjoy reading but in the middle of the night when my body won't relax I find it difficult to concentrate on a book. I do have a warm milk drink though which does help. I'm hoping that once I start on the BCG therapy my brain will stop with the what if's.  I'll wait and see.

    Take care

    Ade xx

  • Many thanks, I found when I started my treatment plan my mind did become more settled, of course the first few treatments played on the mind..

    Was worried about the catheter etc which seemed to be the worst part of the TURBTs for me.

    Turned out the catheter is a lot smaller for inserting the BCG and is in and out in a few minutes.

    I'm not saying it's an easy process but wasn't as bad for me as I originally convinced myself.

    I really hope you get a good nights sleep soon.

    Kindest regards.


  • It's natural to worry - when you get started on the treatment, you will probably feel a bit better. When I have difficulty sleeping because my mind is on overdrive, I listen to podcasts. The voices are either interesting enough to distract me, or soothing enough for me to drift off to sleep. Try not to fret about being awake, but try to feel that you are just lying, resting. 

    Make sure to drink plenty during the morning as that may help with any sleep deprivation symptoms. Hope you feel better soon.