Today, I am Struggling

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Fellow travellers, today I must admit I am struggling. I still have problems with frequency and urgency including at night which is disturbing my sleep, and indeed really limiting what I can do, so am almost house bound really. Plus my prostate has been really painful. Peeing is painful before and after. I think the BCG plus catheters etc has affected an already enlarged prostate.

I have completed my 6 week induction course and my cystoscopy is next week, which I expect to be a rather uncomfortable procedure when it’s carried out.

Lastly not really being able to go anywhere because of urination problems is limiting my life, and consequently that of my wife, which is really depressing.

Have any fellow travellers experienced these problems and how did you overcome them? Really keen for BCG to work obviously , and try and have just a bit of normality.

Leo

  • Many of us have, Leo. I posted somewhere on here similar concerns around 8 months ago after the TURBT as my quality of life seemed non existent. My most recent BCG treatments (3maintenance) also severely affected me with constant urgency, burning, pain especially near the glans and around the prostate, extreme fatigue and some other flu like symptoms. It is not difficult to feel very discouraged but thankfully, the symptoms do lessen with time. Give yourself a number of weeks to begin to feel somewhat normal again. For me, the urgency seeks to last the longest so I have to be more conscientious to ensure I am not too far away from a bathroom for too long as I may need it quickly. I am now 5 weeks from the last BCG treatment and I am around 80-85% normal. I also wondered if the BCG or the catheter was the main culprit for these symptoms. I really dislike having a tube pushed up me although my BCG nurse is excellent and very careful when he does this. I think the burning from the BCG is the main cause of the symptoms, not the catheter. It will get better, my friend, with time. The significant lifestyle change is one of the most difficult affects of this terrible cancer.

  • CDN thanks very much for the full reply, which does give me a bit more hope (thank you). I tend to agree, the BCG is the culprit. The scientists are working had on new therapies - let’s hope a new and effective alternative emerges soon! Leo

  • Hi Leo

    I'm so sorry to hear that you are struggling. I don't have any advice to offer as I haven't started my BCG therapy yet. Mine is due to start on 27th May. I just wanted to send you a hug and to say I hope you and Mrs Leo start to get back to more of a  normality soon.

    Ade xx

  • Hi Leo, so sorry to hear you've been struggling.

    I can only imagine what you're going through ATM. I normally have the extreme urgency and pain while peeing for 24 hours or so, and then start getting back to normal. I'm drained after the 24 hours, so I'm not surprised you're struggling.

    I'm fortunate to work from home, so I don't have to commute anymore, but if I did this would definitely be a struggle for a few days anyway.

    Sorry I couldn't offer any advice, however at least you are going to have a break from the BCG for a while.

    Hope the cystoscopy goes well next week.

    Kindest Regards

    Trevor 

  • Ade don’t let my experiences colour your feelings towards BCG, if it works, it’s all worth it, and one must expect a few bumps when treating such a serious illness Leo

  • Have you got one of the Macmillan Toilet cards Leo? At least when you show that, most shops will escort you out back to the staff loo. Some [my OH says] are grim, but much better than no loo. Call the helpline [number right down the page], I think they may post you one out. And though it's not nice, better tena men pants for a while than being imprisoned at home. OH has a spongebag in the car glove pocket with a disposal bag, spare tena pants and wipes, good for a change if needed.

  • Hello Leo1

    Sorry to hear you're struggling. I am too. I am in an exactly similar stage as CDN who addressed your concerns. Have had my 3rd Maintenance BCG Immunotherapy and is going through the same pain and symptoms as CDN. After my Induction Therapy my pain and dysuria lasted 4 months thereafter. This time round it's on the 6th week and will go for a cystoscopy soon. The pain I feel when I wee is excruciating. I seem to have some retention too and have to go frequently all day and night. 
    I know too well how you feel. Quality of life is poor with such constant pain and discomfort. It will be worth it all when we know it has worked.  
    JSL

  • As a long term in-dwelling urethral catheter user since 2018, I fully understand your discomfort and problems with sagging morale, and that's without the additional BCG treatment which you are going through. I've been spared that as I'm on palliative treatment so only have the catheter to cope with. I do wish you all the best with your treatment regime and like others on here will listen and respond if you need to 'talk' to someone who understands.