How I Coped With My Treatment Procedures
Ignorance as we know at times can be bliss. Prior to my cancer diagnosis I knew very little about bladder cancer or what life would be like when living with cancer. The one thing I did know is that I never wanted it, never even discussed it within my social circles. I didn’t even have the misfortune of having a family member diagnosed with cancer to relate with. So, on that memorable day in April 2017, I was pretty much on my own when it came to what next after being diagnosed with bladder cancer! The following six months after diagnosis was a roller coaster of emotions, but more importantly a huge learning curve.
I wasn't prepared
I don’t think you are ever really ready to receive the news on having cancer, and even less so prepared on how to cope with everything that follows a diagnosis. My main issue, which many men may relate to, is having to receive all necessary treatments through the urethra. I’ve had friends in the past that have talked about procedures they’ve been through where a camera was inserted into the urethra. The thought alone would make me cringe with a very uncomfortable feeling within my loins, and that was just the thought alone… So, imagine having to go through the real thing! Unfortunately for me, but fortunately for those of you that are reading this, I’ve now been through many procedures and want to share with you how I’ve coped mentally, emotionally and physically.
My experience with cystoscopies
A cystoscopy is a procedure to look inside the bladder using a thin camera called a cystoscope. A cystoscope is inserted into the urethra and passed into the bladder to allow the specialist to see inside. Apart from the first time having this procedure the biggest issue for most men having a cystoscopy if we're being truthful is the mental torture, which induces the pain. My very first experience was scary as hell and the sensation whilst being treated felt awful, but honestly this was all being played out in my head. It can be scary (fact) and the feeling is weird, but the pain is minimal and the procedure is very quick.
The real pain was in my mind
The real pain was the thoughts going through my mind of this instrument being inserted into me from a place that is sacred. My anxiety layered with the adrenaline during this procedure was on high alert, which adds to the stress and it wasn’t until I was in the car on my home that my levels started to drop. You can after this procedure have a few days of slight burning when passing urine, but drinking plenty of fluids does increase the healing process, and if it doesn’t, and the pain continues, then a visit to your doctor for antibiotics will help as you may have a UTI.
Going back for your follow up cystoscopies is very interesting. The closer the date gets, the more anxious you can become. The issue now is that you will start playing out the procedure in your head, now knowing what to expect, which never worked in my favor…so why do we do it to ourselves?! Going through the procedure in reality is enough to take, let alone living it out over and over again in our heads. I took to blanking the thought of the upcoming date and only gave it relevance on the day of procedure. Whilst waiting to go in the treatment room, I would occupy myself with something, whether it was just talking about anything with my wife or listening to music or even having reading material. I basically did anything to take my mind off the reality. When in the treatment room I would go through my breathing process, which helped to relax me and shared this need of mine with the medical staff present, so they understood how I coped. I’m not saying this will work for all, but the alternative is to stress yourself out, which will bring on anxiety, which in turn will tense you up, making the procedure more painful.
A TURBT, is a procedure in which bladder tumors are removed from the bladder wall. A scope is inserted through the urethra into the bladder. This procedure is normally done under general anesthetic. I found this experience one of the best and worst. The best thing about having this procedure was the fact that I was put to sleep, so would feel nothing whilst under the anesthetic. Waking up from the procedure is where the problem will be. You're left with a catheter, inserted through the urethra into the bladder, which will help drain all the bladder fluid into a bag. Whilst this is uncomfortable, on my first TURBT procedure I was convinced that I was unable to move from laying on my back, and when asked by the nurses if I would like to sit up or get out of bed to walk around, I flatly refused without even attempting to try. My plan was to never move until they were ready to remove the catheter. I stayed like this for 24 hours until my bladder was clear of the blood from the surgery and my catheter was to be removed. Not the best plan, because my body ached without the lack of movement for so long. The removal of the catheter is again a mind over the reality.
I worked myself up
I worked myself up, convinced the removal was going to be painful. So again my stress levels were sky high. Fortunately for me I had a very good nurse who explained that unless I relaxed this would be painful. In order to relax myself, which seems a very simple thing now. I was asked to take in a very deep breath and to let it out slowly. Whilst letting out the breath, the nurse also started to remove the catheter. Now don’t get me wrong the sensation of the catheter being removed is strange, but there is very little pain. In fact, when it was removed, my entire world became a much better place.
The recovery period
The biggest dilemma with a TURBT is the recovery period. The passing of urine for up to a couple of weeks after can be very painful, but in time this will ease, returning your waterworks back to normal. I found it less stressful during this period to always sit whilst passing urine as I was able to manage the pain better sat down. I was also very careful during this period, because the urgency to urinate is very strong and so very easy to get caught out. I took to carrying a urine bottle when traveling, which saved me on a couple of occasions. I did go through a second TURBT surgery, which I dealt with completely different from the first, as hindsight is a wonderful thing. I did manage to get myself up and walking around (no pain) and did what had previously helped before, by taking in a deep breath and exhaling slowly when the catheter was being removed (no pain).
Bacillus Calmette-Guerin (BCG) is the main intravesical immunotherapy for treating early-stage bladder cancer. BCG is put directly into the bladder using a catheter through the urethra. Having been through a number of cystoscopies and a couple of TURBT surgeries, I was told by the professionals that the BCG procedure was minor in comparison. This is very true, what is not factored into this assessment is what I can bring to the procedure, which is stress, anxiety and fear. Being awake for this procedure again brought out my demons, and I was very tense during my first dose of BCG and so made it more difficult than necessary. The procedure is very quick and, if relaxed, pain-free. The trick again is how to relax. So again, I was being told by another lovely nurse to take a deep breath in and to slowly exhale. To my amazement the procedure was over before I even realized the catheter was actually inserted.
Encountering a new nurse
I followed this method over a 4-week-period, once a week and was very pleased with how pain-free this was. My treatments were set for 6 weeks and on the fifth week I was met by a new nurse telling me my treatment would be administered by her today as the usual nurse was not feeling well. This brought on a mini panic attack, and I almost refused to see her. My fear was she didn’t know me and of course she was going to be rough and cause me severe pain. On entering the treatment room, I told her how nervous I was and how the other nurse had treated me. She replied, ‘We all do things different here’. I hated that response and started to hate this nurse, that I never even knew. All I wanted to do was run, but I stayed to get it over and done with, vowing to make a complaint that I was only told minutes before that I would be having a different nurse. After getting ready and now laying on the bed, she asked if I could cough when told to. I did so at the appropriate moment of being asked and yet again to my amazement the treatment was over, with no pain. How stupid did I feel! I was also left feeling really guilty about how I was judging this poor nurse who just wanted to treat me, but I was so happy on reflection to learn another method on how to receive this treatment.
Counting on my coping mechanisms
I’m still currently having cystoscopies every 3 months for check-ups and over the next year will have a number of BCG vaccines. The fear of receiving treatments can still creep in, but I’m able to delete them from the mind, so not to give it any power over me. My mind will always want to keep me in fear of receiving these treatments, but my experiences tells me that they are never as bad as I would like to imagine. So long as I follow my coping mechanisms I’m always able to get through the process.
Have you talked to your doctor about navigating sex with bladder cancer?