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 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
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I'm sure lots of you have the same issues. Any suggestions would be very welcome.
Ade (very tired) xx
Hi Teasswill
When I can't sleep I feel myself getting crosser and crosser. I don't usually listen to podcasts but I'll give it a try.
Thank you for the advice, take care
Ade xx
Hi
Anxiety is not uncommon and lack of sleep occurs. I still get anxious prior to my consults and that's after seven years. The aim is get all your butterflies flying in formation. I make sure that I get plenty of exercise and I meditate, which helps with sleep and general wellbeing.
One thing I have learned is that there is life between appointments and I don't let the cancer dominate my life. Come on here as often as you like,it helps.
Hi furbabymama, sorry to hear you are struggling with the anxiety that comes with the waiting for treatment to start. I know how hard it is to make the decision, I was on here at the time getting advice and it definitely helped. I chose the Bcg route and am happy that I did, all so far so good, diagnosed 2022, started bcg in the November and now in 2024 just had 3 more bcg, that's about 18 I think and been clear with the cameras. I am getting anxious about camera due beginning of June but I think this will happen every time before you get checked, you worry has it returned and if you have made the right decision. I just could not have faced that major operation given there was another option. I used a meditation podcast for months to calm myself through the night. The Bcg has not been too bad and you have quite long breaks in between when you carry on with life, enjoying every minute of it. Always in the back of your mind are the what if's. Hopefully it will all work out for you once you get started. I had high grade 3 PT1 as well.
Just another thought - keep a notepad & pencil by you. Write down questions, worries etc. day or night. That sometimes helps put the thoughts aside - to review later, put in priority order.
Hi Ianw
The whole diagnosis has come as such a shock. It's difficult to rationalise it in my mind. I know that at the moment I'm cancer free, and hoping that the BCG works for me.
Thank you for your thoughts and insights they really do help.
Take care
Ade xx
Hi Bumbleebe49
I agree, I could not make the decision to have a cystectomy. It all seemed too much too fast. So I am happy to be on the BCG pathway. Hopefully when I actually start it the what ifs will go away for a while.
Good luck and fingers crossed for you in June.
Take care
Ade xx
First off, it's fantastic news about the biopsies coming back negative. That's a big relief. As for the BCG therapy, it's natural to have doubts and ""what ifs"" swirling around, but try not to let them consume you. Trusting your decision at the time was based on sound reasoning, and that counts for a lot.
Sleep can be elusive when the mind is racing. Have you tried any relaxation techniques like deep breathing or guided meditation? Sometimes, just focusing on your breath can help calm those racing thoughts. Also, consider reaching out to a professional for support. I found this website https://mentalhealthhotline.org/anxiety-hotline/ that might offer some guidance or even just a sympathetic ear when you need it most.
Hi Joseth1n
Yes I'm very relieved that it's not muscle invasive, phew! And I had the date for my first BCG session confirmed for 27th May. I'm trying to focus on getting my first 6 sessions done now but still struggling to sleep
Ade xx
The 'what ifs' are a nuisance but completely natural. I tend to listen to music on my MP3 player when sleeping is difficult. Sometimes it works and I wake up to music in the morning. Last night I seemed to be listening and wide awake all through the night, so I still need some sleep! Best wishes for your BCG course. This cancer business is a major distraction but your good news will provide more avenues of treatment to control or even eradicate the beast.
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