Dealing With Surveillance Check-ups After Receiving the All Clear
I've had some difficult moments on my cancer journey. Dealing with cystoscopies, TURBT and BCG treatments is never easy. The process and my treatment were made very clear after diagnosis and my ultimate aim, like all others with non-invasive bladder cancer, was to eventually after treatment hear that you are clear of cancer. I received this conformation from my urologist, 6 weeks after completing my BCG treatment, which was 6 months into my cancer journey. My euphoria was unfortunately short lived, because there is the issue of dealing with surveillance check-ups after receiving the all clear.
Monitoring and maintenance after the "all clear"
Cancer as we know can be a very stubborn disease and doesn't always give up without a fight. So, to prevent the recurrence of cancer I was advised to continue with what my medical team called 'maintenance'. I was really looking forward to leaving all that treatment behind me. It's exhausting having to battle with my emotions in respects to what I have to go through before and after every procedure. Plus, I’ve just recently got my body back into shape, both inside and out and for the first time in months I was able to sleep through the night without the need to urinate and more importantly wasn't passing blood, or in any pain whilst urinating.
The maintenance work I was told will last for a minimum of 2 years. So again, I've been receiving BCG and will have 3 doses, one per week, every 3 months. I will then six weeks after my third BCG, receive a cystoscopy to look at the condition of my bladder. If this shows no evidence of cancerous cells/tumours, then I will go through this process on another four occasions throughout the year. Some people may say, and most likely those that have never had cancer, "it's a small price to pay, if you're cancer free" and yes, they are absolutely right. My problem is that I've never had an issue with having cancer. My issue is the way in which I have to receive the treatment. I hate, and I know it's a strong word, but I do hate the fact that I get anxious before certain treatments, because I've never suffered from anxiety before being diagnosed. I’ve been in some scary situations in my life and my work is also high risk and neither have ever worried me. I pretend to my family, the nurses and all others that I'm fine, but I'm never going to be fine with this and to make matter worse, there is nothing I can do about it.
I plan to be more stubborn than my cancer
My treatment is working and at all cost to me whether I like it or not I plan to be more stubborn than my cancer. This self-willed, stubbornness of mine is a burden I think will be carried by me throughout my cancer journey. What I mean by this, is that I'm reluctant, in fact defiantly not prepared to show any form of weakness to this disease, even if the situation is called for. A psychologist would explain that it’s not a weakness to be scared or anxious, but a natural reaction to a real fear. For others yes, but for me, it's a weakness and something I struggle to acknowledge. Although I have been getting better at opening up about my fears, particularly to my wife, which is a pact we made when I was first diagnosed. I have many people that look up to me, no more so than my 2 daughters and granddaughter. I really don't like seeing them sad or concerned, and definitely not over me, so I will hide my pain from them. I also feel obliged to show friends and family members, that this fight with cancer can be achieved with a smile on your face. Even though at times my smile is so fake!
Being cancer free isn't making me feel free
Although I am clear of cancer, it still feels like my life is on hold. I have to plan everything around my treatments and recently had to negotiate with the urology department on appointment dates so I could get to go away on important business. I'm not sure if I'm more frustrated now, than when I actually had the cancer. Being cancer free isn't at the moment making me feel free. I'm still in treatment, I'm still going through painful days, and I'm still bleeding for a certain amount of time after my BCG vaccines. It's amazing how initially I thought the maintenance work would be a blessing. It's as though I'm having the option to taste a little freedom, but with a gentle reminder in the shape of a little dark cloud looming overhead. Telling me this is a marathon you've entered, not a sprint, so pace yourself, because its a very long road. What's ironic is that my reaction to being told you have cancer, and then months down the road, being told you are cancer free, was pretty much the same. I felt neither happy or sad on both occasions. It's as though deep down I knew a lot would be played out in both cases, so not to get myself to excited.
So where do I go from here?
On reflection, or in time, I'm hoping that I'm able to look back on my cancer journey and smile about these moments. My thoughts, my views and my opinions has evolved with me over the length and time of this cancer journey. I refer to myself as 'work in progress'. I don't have the answers and I won't know the end result until I get there. So where do I go from here? That's easy, I continue doing what I've been doing over the last 9 months, which is, to try my best to look at the positives within my journey. Pretending to be OK with my treatment and being a super hero to my family and friends, by showing them you can succeed in the face of adversity with a smile on your face, even if at times that smile is fake.
Have your views towards bladder removal changed since you were diagnosed?