Can't sleep…..it’s 04:54 …..been tossing and turning….

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Hi, anyone.

I’ve been, so far, diagnosed with  non invasive bladder cancer (grade 3 tumour, stage 1, plus a carcinoma in situ). I’ve been booked in for another MRI bladder scan and a thorax CT scan on 17 September, followed up by a meeting with the oncology consultant on 30 September to discuss treatment options. Those, it seems at this stage, are the facts.


And then there are the nightmares, the imaginings, the what-ifs. Its these that, throughout this night, are keeping me awake. My husband is snoring by my side and I don’t want to wake him. I'm 75, he’s 81.  He is being so supportive but he needs his sleep!

So here I am, writing once again in this forum, from which I’ve already had so many excellent pieces of advice not  to mention great the emotional support. I think what has precipitated this awful night was a discussion i heard yesterday on LBC radio about cancer; the gist of it was that there is still no cure, and though each cancer is different, most people still eventually succumb to it and die of it.  I had thought that bladder cancer was/is treatable and not a death sentence, but this radio discussion really upset me. With my current diagnosis, do I have a good chance of surviving this?  My oncology nurse told me that my treatment options are probably going to be BCG treatments or bladder removal, and this is what the consultant will discuss with me on 30th September.  But what if (there I go again with the what ifs, but my mind is deep in that quicksand right now) the upcoming MRI and CT scans find more cancer..in lymph nodes, even breasts……what then….will it be chemotherapy with all the side effects……and eventually succumbing anyway…..?  If you’ve been patient  enough to read thus far, have you any words of advice…….or is this a very unfair question…..as none my questions are answerable when you get right down to it…….perhaps the only answer is for me to get a grip, pull myself together, take things one day at a time, etc.  My intellect agrees wholeheartedly but my emotions are becoming out of control, especially this night. At my advanced age I should be more able to steady myself……but tonight I'm crumbling.

  • Hi Seamoth, all of us understand what a tough time this is for you. Waiting to hear which treatment the medics suggest, trying to decide which choice you feel is right for you, stress levels are naturally very high and it is exhausting. Adrenaline will be coursing round your system. There are many different treatment options and I think your nurse’s advice is very helpful. My tumour, which was very large because GPSs delayed referring to Urology, was Grade 2 Stage 1 and the choices suggested to me were BCG or bladder removal. That was 2017 and I was 70. Now aged 75 and 27 BCG’s later I am still alive and enjoying my life, I have come to accept that I must take things one day at a time, but what a great way it is to live. I suffer far less anxiety and grab every moment of joy. I hope this will be a better day for you, be kind to yourself and definitely eat cake! Sending you love H x

  • Hi hope you managed to get back to sleep for a few hours Sleeping the nights seem to be the worse time for overthinking everything and you can get so stressed and anxious xx  it can be so hard  dealing with cancer ... I found myself reading everything and worrying over what was going to happen ..how long would I live with this ..it made me so depressed.. I know it's very hard but try to enjoy each day we are blessed with ..I am nearly 67 years old and so far thankfully have been OK..I have had 15 bcg treatments and many cameras in bladder to check if it's OK.. I'm hoping I will have many good years ahead of me .. try to take one day at a time ..so many people have no fore warning of illness and have no chance of treatments.. take care and keep strong  love from Tina xx

  • I had those same sleepless nights when I was diagnosed, but waiting for results & with decisions to make. I understand how hard it can be to be pragmatic about the situation & wait patiently to know what the future holds. 

    I don't know who was on LBC, but they are wrong to say that there is no cure for cancer as a blanket statement. Cancer is not one disease, there are so many different types. Some can be cut cured, some treated to the point of indefinite remission. Depends also on the stage at time of diagnosis. With your current diagnosis, the BC is definitely treatable & potentially curable. A bit harsh to say, but we all have to die of something eventually. You might feel it is too soon for you, but the time & cause of our death is rarely anything we have any control over.

    Take a deep breath, find something to do to take your mind of the what ifs. Try not to waste precious time with worry. Alternatively, a different option is to look on on cancer as a new project, accept it, embrace it with curiosity. Plan for it by ensuring you eat healthily, take exercise. 

    Whatever the results, you will have choices, which can be difficult, but does at least give you some control over what happens next. I think I may have mentioned before, on my sleepless nights, I used to listen to podcasts (& still do if I find it hard to sleep). Hope you have a better night's sleep tonight.

  • Hi Seamoth,I think most people would agree that the early days following diagnosis are the worst.Your mind is overactive thinking of all the different scenarios,good outcomes,bad outcomes,how you will cope with treatment etc.I certainly felt much better once I had seen the consultant and knew what would be happening.I was apprehensive about needing surgery but followed the good advice on this board.It’s easier mentally not to think too far ahead.As the others have said enjoying each day is important.I hope you managed to get some sleep and that the replies here help.Love Jane xx

  • I want to than you all from the bottom of my heart for all your soothing, wise and informative replies to last night’s “dark night of the soul”.  I feel stronger now emotionally and will attempt to follow your advice - its my path to ….well, to pragmatism, I think.  

  • That's the way xxOk hand

  • I hope you slept better Seamoth ? Best wishes for your scan and appointment with the consultant.We are all here for you.Love Jane xx