You are putting this all behind you. While I can not guarantee it is all down hill going forward it probably is. We all know people in lot worse conditions. One day at a time. You will wake up from this dream in a little while and say: "Did I really go through this"? Thanks for sharing.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Thank you so much for sharing this with us. I know that many will closely identify with you! I went through this over 11 years ago and, so far, am doing great. You will also.
BCG is not a BIG DEAL. OK, it is sort of a big deal but not a BIG DEAL. For most of us it is an inconvenience and a moderate discomfort, but so much better than chemotherapy would be. I assume from your description that your diagnosis included CIS? BCG is wonderful for CIS. You can do this!!
I look forward to additional chapters in your book "The Odyssey of Bladder Cancer" first, because you write so well and second, because it will help those coming behind you.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
I have gone through 6 weeks of fairly brutal BCG induction.
On Monday last (Nov 18), the urologist went in to to take a look at the results of the induction. When I woke up from hte general, she told me - I'm sorry. There is another mass. It looks like the first tumour. the treatment seems not to have worked. You look as though you are BCG resistant. Let's wait for histology results, discuss alternative.
Fave days of complete re-adjustment, depression, disappointment, devastation, crying family
Then - this morning. Result. No cancer. Clear. The new mass was simply an inflammation from the BCG reaction.
Not even sure where to begin with the complete upside downness of where I was and where I am today. Elated, of course. But completely repositioned about what I am and what will come.
I am not sure whether this is appropriate. I am a novelist. Three days ago I went in for a scope and came out with a diagnosis of bladder cancer. The only way I could process this was to write. Perhaps some people here maybe recognize some of this:
1. Jan 1 - August 19th, 2019
Blood is pouring from the end of my penis. Not dribbling. Pouring. I am in extreme pain. The hospital room floor leading from the bed to the bathroom is splashed with urine and blood. My wife Kate is behind me, appalled as I stand-in front the toilet bowl grimacing and burning and holding my soaked hospital gown aloft. My overriding thought is - how will she ever have sex with me again, after seeing this?
A couple of hours previously I have a euphemistically-named ‘exploratory procedure’, in which a urologist pushes a camera up my urethra, under general anaesthetic. She did not like what she sees in there. So she excavates some tissue and removes it for examination by experts. When I wake up tells she me that it may be nothing, but it may be something. But I see the pictures she took, helpfully provided to me in hi-res printout. I compare it to what I see on Google.
The chances of it being anything other than cancer never crosses my mind.
Many months back, in January of 2019, I have a small sharp gastro episode, taking a couple of days to clear. Somewhere within that time I notice a small amount of blood in my urine. My reaction is one of curiosity, not alarm. It is gone a few days later.
Six months later, I am hit with another fairly minor stomach bug, which was, according to my non-scientific study of Facebook posts, tearing across my home town. Again, blood in urine. I go to see my doctor, who is also a close family friend. Not about the urine, more about the rest. I mention it only in passing. Her ears prick up. She knows about a family history of various cancers, including my father. Her verdict is final. Go get checked up. Now. Full urology work up. You don’t fuck with blood in urine and a father who died from bladder cancer. She didn’t actually say ‘fuck’ (she doesn’t swear much), but the sentiment was there. She gives me a name a number.
I am lying on a bed in my urologist’s office with my underwear around my knees. She is manipulating my exposed penis, interspersing ‘does this hurt? with ‘what do you do for a living?’ and other small talk. She has fixed me with her eyes. She is very pretty. I wonder if she does this to avoid embarrassing erections. I am sure that must happen; her manipulations are gentle. It is not going to happen in my case, because am I trying to understand what the fuck I am doing there, as 7 day-a-week gym denizen, healthy, toned, prudently-fed male, whose view of himself is suffused with a certain indestructibility, even in the face of 65 years lived.
The urologist is Indian. Fairly young. Beautiful smile. The smile calms me. Her youth gives me confidence. I imagine she is of a generation of doctors that grew up with the Internet, that she spends all of her free time keeping up with the latest in medical science. I am in good hands, I reckon. She does an ultrasound. What lovely kidneys, she remarks. Your prostate looks good. I am proud.
She explains the procedure. She will peer into my bladder. If there are any little growths she will snip them off. But if any of the walls of the bladder are coloured an angry red, then there may be a bigger problem. ‘Bigger problem’ is cancer, so powerfully titled ‘The Emperor of All Maladies’ in Siddhartha Mukherjee’s Pulitzer-prize winning 2010 book.
I leave her office and what was a pinprick of anxiety now widens.
The procedure is scheduled for a week hence. I am busy. I have a novel coming out, there are covers to approve, launches to plan. Then there is my other life, where I am partnered with a corporate advisory firm on various investment banking initiatives. My diary is full. As the day approaches I realise that the following day has a full schedule, including a visit to an embassy, and the waiting in long queues that this might entail. I have visions of wetting myself on the embassy floor and being banned from that country for life. I reschedule.
Two weeks later I arrive at hospital for a CT scan plus the operating theatre procedure. The admissions desk has no record of me. Dates have been messed up by someone. Perhaps me. I get grumpy. It is finally cleared up, but the price to pay is that I am last in the queue. I estimate that I will go into theatre in the late afternoon.
I am given a bed in a room with three other awaiting patients. I lie down and do some Whatsapping and some Facebooking and some emailing and some chatting to my wife and then settle down to read a novel. I am not allowed to eat or drink. At about 10AM I am called down for the CT scan, which is a cautionary measure, apparently, to see if there is any other nastiness between sternum and groin.
In the CT room I am placed on a table and fed back and forward through a doughnut shaped device, where the imaging happens. I am also injected with a tracer, which gives visibility to my organs. A weirdly disembodied American voice from inside the machine instructs me when to hold my breath and when to breathe normally. It goes smoothly, and my mood improves, but for all I know the machine may have found the baby Alien in my stomach.
I am back on the bed in the ward by 11AM, unfed and faced with a 7 hour wait. I nap. Wake up. Talk to my wife. Deal with my smartphone. Read.
It is new worry, one which has never occurred before. The thing I worry about, the thing that I have never had to worry about before is that no matter what lies ahead, my future has changed irrevocably. Even in the best case, mortality has become tangible and immediate. As this thought settles itself clumsily into the centre of everything it immediately becomes evident how much of thinking is about the future. Arrangements for tomorrow, next month, next year, what say, where to go, what to buy, what to change. Dinner plans, holidays, new socks, car service, a chat with one of my children, now living in other cities. The future looks different now. It is blurry, out of focus. It could well disappear from view. How could that be? It has never once, even for an instant, disappeared from view.
I try to calm myself. There are many scenarios here, some have happy endings. Or at least not unhappy endings. Concentrate on the not unhappy endings.
At 5:30 PM I am wheeled into the waiting room next to the operating theatre. I have no phone and no novel and there is nothing to do but wait. It is excruciating. And then suddenly I am in, surrounded by blue-clad busy-bodies. My Indian doctor, anonymous behind the mask, tells me not to worry, it will be over quickly. I sense she is smiling, and I am briefly confident. I am dulled by gas and then quickly knocked out by injection.
When I come to in the recovery room of the operating, the doctor is standing next to me, I am inexplicably immediately alert, or at least alert to get the general message. I am not OK. She paints three scenarios for the dark red smudges she shows me in the photos. Either an inflammation (even so, she says, she would want to look again in 3 months), or a superficial cancer, or a cancer deeply imbedded and beyond submission. We will not know anymore until the biopsy returns from histology.
The third scenario, she says flatly, will require treatment to save my life, rather than the bladder.
The trip back to to ward on my wheeled bed finds me staring at the lights sliding by on the ceiling, hollowed out. I cannot process it at all. This morning I was worried, and now am not worried, but something else, something much deeper, darker, lonelier.
Kate is at the ward. She knows. She hides what must be her horror, and tries to say the things that will help. I hear again, there are many scenarios. And then there is a stab of pain and an explosion of fluid over my leg and I stumble out of bed and dash as best I can towards the bathroom.
2. August 21
We wait for the results. They are expected on Friday, two days from now. I am now unable to think of not unhappy endings. I am convinced by the certainty of not happy endings.
It hurts to urinate, I dread it. My bladder feels full, even when it is not. I am scared that there will be no bathroom nearby when the urge comes. There is still blood, although not a lot. I feel strange forebodings in my gut, as though there is conflict and insult there, only vaguely felt, but quietly adamant.
I want to hide in my bedroom, watch loud TV, block out the world until it welcomes me back. I fear the world has moved on, it will never welcome me back.
We talk about the children. They deserve the truth. I wonder how bad the call will be. My son will be home from university when the result comes out. We will sit him down, and get my daughter on the line from Holland, and I will tell them.I received that call many decades back. It was beyond imagining.
Some of our friends know, in sketchy detail. My sister, a brother-in-law, a cousin, a few others. I do not want them to fret, they have their own lives. I feel guilty for burdening them.
My wife holds firm, practical, gentle. But I know the fear she must feel. I push it away, for now.
I attend to business, take meetings, speak on the phone.My concentration lapses. It all seems so puny now, last week it was large.
At 17:45 the phone rings. The results have arrived. Can you be available at 12:30 the next day? Will you bring your wife?
I am terrified.
3. August 23 9:30
It was a bad night. I woke up at 3PM to urinate. It was agony, worse than the day before. When I got up in the morning light there was blood everywhere - both in the bathroom and the bed. I went to a dark place when I saw this - I can’t do this. How am I going to do this? Kate was massively supportive as usual.
Also, this is first night that the anxiety has directly penetrated my dreams, which since the hospital procedure have been a welcome respite. The dream involved me trying to find Kate at a cineplex, and not being able to. Then finding s gaggle of young women in one of the theatres, one of whom leads me to dark nook and starts to get physical. I want to, but I am scared she will see the blood seeping from me, so I back off. There is also guilt - Kate is in one of the other theatres - what am I doing with this girl (who is unrecognisable to me)?
I start to imagine what I will do if I come out the other side of this intact. A life of travelling and family and friends and reading, without the pressure of work. We can afford it, if we are careful. I wonder if this practical or even as pleasant as I imagine it now.
I tell Kate what I want the doctor to say, when we visit her in a few hours. I want her to say it is not too bad, treatable without undue trauma, slow moving. In the back of my mind looms the monster of a urine bag, in some ways even worse than a terminal prognosis.
Kate gently suggests that we should try not to let this consume our days and thoughts and conversations, we should try and push it back as much as possible. I don’t know how to do so that.
Kate receives some good news in other parts of her life. She is jubilant. I am pleased for her, but I have trouble separating it from my state of mind, which ranges between fear, despondence and despair.
4 August 23 12:30
The news is not the worst. Doctor says it is cancer, with emphasis on the word is. As I said, I had never expected anything else. There is a great deal of detail that pours out, the most important being that it is not far enough advanced for either bladder removal or general chemo (as a result of metastasis). It is early stage, but it is fast moving (‘high grade’ - an oxymoronic word which means ‘aggressive’). There is a brutal treatment regimen - once a week for 6 weeks I have to be in hospital for a catheter-administered infusion of a medicine called BCG, which is actually the vaccine for tuberculosis. No chemo, this is the treatment du jour. Then frequent maintenance and infusions and follow ups for years.
The survival rate for 5 years is high (96%). Recurrence is also high (I ignore this). But maintenance for years is a requirement.
I am relieved, for the first time. I am not losing my bladder today. I am not losing my hair tomorrow. My life will be minimally diminished, for a while, mainly because of the treatment schedule. I will be in pain often. I can deal with that.
Sex will be problematic. The BCG is a live bacteria. It can be passed on. Wait 48 hours after each treatment they say. I cannot imagine I will want sex again, notwithstanding erotic dreams. I can’t imagine Kate will want sex again, at least with me. We resign ourselves to 6 sexless weeks during the treatment phase. I push this fraught matter aside for the moment. I hope I will be a fully functioning ex-cancer person one day.
I feel I can breathe again. There is a plan. Actions, schedules, monitoring, medicines. Anxiety remains but is largely battened down. I can do my book launches. Go to the office. Be productive. Read a book. Go out for dinner.
On the 12 of August I am scheduled for my first treatment.