I think when you get told you have prostate cancer everyone reacts differently.
For me I was about to get married when a random PSA test showed some concerns. 4.7 but no symptoms.
49 years old and talking to a consultant who said not to worry. Looks like inflamation as two areas of the prostate in either side show light shading Not typical cancer patterns or showings. Likely prostatitis and we can treat with antibiotics.
We I get the month long dose and go for another PSA just before the wedding in May in the hope of a reduced count. Was hoping for something around 2 on the PSA but sadly was 4.6. So the plan was simple, go get married, enjoy the honeymoon and when you get back we can get a biopsy done and rule it out.
Head in the sand and the most amazing day in Lyme Regis with family and friends and here we come Jamaica...
Back in the UK and reality hits. What if... I think at this stage I started to settle and bargain with myself. OK, it will be cancer but low grade. We will zap it with some radiotherapy and job done. I also looked at the law of averages and said well if one of us is going to get cancer, ill take one for the team, it can be me and we are done. I will get fixed and happy days.
The biopsy was OK. Consultant decided on a small core sample as he wasn't concerned or that cancer was likely and no point in invasive procedure if the outcome was likely not cancer. Biopsy was sore, journey home I felt every speed bump I can tell you and nothing can prepare you for urinating blood and when you do get round to testing everything still works and wondering exactly how much blood is in your semen... turn away! its not pretty and was a gross shade of red to brown for about 3-4 weeks. I know its not a risk to your partner or anything like that, just doesn't make you want to see it knowing its there to be honest.
Results day was fun! long wait outside the room trying to work out if someone is running over with terrible news, is he eating his lunch, is he preparing a big speech for me and offering a will writing service... dry mouth is all I remember outside the room.
We go in he says your biopsy is positive. At this stage I think I tuned out for a bit trying to work out if this means I can cancer or not. First appointment I asked my wife to attend and glad I did. Turns out we heard completely different things at different times. I picked up on some bits, she on others.
I had a gleason score of 7. 3+4 in most areas and a 4+3 on one side which tipped me from watch and wait to action stations. I felt sick and in shock. doesn't everyone? you see people in movies getting this news and it's the shock scene as it sinks in. Pretty accurate to be honest. It was decided surgery was the best option and a robot and consultant would remove the prostate, partial nerve sparring and go from there.
This is the bit I love the most though, the reframing and bargaining... Best bad news ever. they caught this early, quite by chance and if not caught I would be dead in 10 years. Woo hoo! thank god I have been diagnosed with prostate cancer. WTF! who on earth says this? when has anyone ever been glad to be diagnosed with this disease? I still have this conversation with myself and say the words over and over. Best bad news ever. In truth I think it is right. This is the best bad news I have ever had. Still don't think I should be grateful though and thank anyone. But its a number game, was my time in the universes grand plan, blah, blah. Sucks though.
Here comes the curve of wonder... anger, denial, acceptance, other stuff... I discovered my wife and I from this point on were not going to be on the same page at the same emotional stage for days, weeks, likely months. It was happening to both of us of course, but we deal with things differently. I am a talker, she is a reader.
The evening of the diagnosis I was Mr Positive. Felt like a superhero actually. I am a massive Marvel fan and felt like captain america, the ever optimist and fighting the impossible fight for the greater good. We got smashed! was fun and we forget about the days news and just were together living life.
Day 2 - hungover of course but I was still optimistic. Flying the best news ever flag whilst my wife had her head in the forums and the research started. After that it was clear we were on different tracks. I was focussed on recovery, she was focussed on the odds from surgery for continence and ED.
My head was in the sand for good reason. I was scared but knew I would be OK. Blind optimism I guess and all I had to hold on to at that stage. Captain America syndrome maybe we can call it? My wife would tell me the odds and I would just see the positive. Well at 50/50 I am of course in the positive 50% of that stat... she would remind me I might not be... and this is where we stayed for a few days when she read about focal therapy as an alternative treatment so we went for a second opinion.
We managed to get a consultation quickly and discovered it was not an option. The great white hope was dashed in an instant but I likely the fact this new consultant said lets get on with it. No need for a scan to see if spread, we can worry about that later, when do you want surgery. Again, Captain America syndrome coming in here. Lets get into battle now and crush this cancer and live to fight another day. Loved it. Felt like I was taking positive action.
My wife on the other hand was worried. This was sudden, I was not prepared and had no understanding on the effects from surgery. It wasn't like I had a choice for surgery anyway, so for me it was avoid the fear and worry and pick it up afterwards when it was real. I spoke to my original consultant and said sorry dude, I have found someone else. Felt like I was dumping him and I did feel guilty, but there was a battle to win so I needed to get on with it. He raised some serious concerns with the lack of a scan to see if spread as treatment would be different if it had and he then offered me surgery following a scan within a week! so he was moving mountains to help me out as he knew I was freaking out and rushing this. Why did he want to help me? maybe he was Iron Man to my captain america? (was the robot Jarvis? - sorry, nerdy Marvel references. Those what know will appreciate the idea and comfort!)
Boom, bang, wallop - stop the bus. Not sure the time of day, day of week or trigger but I woke up. Took off my Captain America costume, dropped the shield and took a long breath and realised I was not ready. I actually said the words to myself. I am not ready. emotionally to deal with this, I am not educated enough to know what is coming. I dont want the super detail my wife has, she is my guide and expert, I just need the high level from her and I can delve in if I want to. But it had hit me, I slammed on the brakes for surgery and agreed a new date in 3 weeks to give me time. time for what?
1) Weekend of sunshine, bar-b-q, hot tub and quality time with the kids. A weekend to remember.
2) Weekend away with my wife. No expense sparred, spa weekend in Torquay of all places! party central... lets go!
3) Prep weekend. Get the house straight and do the jobs I need to do around the house and garden before I am out of action for a while.
This is where the wheels fell off the bus a bit too and I started to cry. Crying was good but weirdly also came with nose bleeds! for a few days when I cried I got a heavy nosebleed. At one stage I started to cry, my wife hugged me and there went her perfectly white top - never to be worn again!
I found I was really emotional for a few days. When I talked about it at times I felt on control. Captain America was back. But then when I dropped my guard I was simply unable to stop. Not sure on the triggers or reason/thoughts. Just everything all at once.
Fast forward to surgery or lets start the day before surgery. If I had my time again I would not try to create the perfect evening before you lose your prostate. I thought it would be an evening of love and lets face it, the last time I will have sex normally or the way I have known for my adult life ever again. The unspoken pressure on my wife was unfair and I think unrealistic. So please don't try create something like I did. Likely to end up as I did which was in the spare room, not talking and being awake all night scared, lonely, wanting a hug and feeling very sorry for myself. The morning wasn't any better. No love, hugs, kinds words or any words on the way to hospital and I walked in to that hospital as if a random Uber driver had dropped me off and to be honest I didn't care at that stage if I ever walked out again. I was there for surgery and wanted to go to sleep as quickly as I could to end this heart ache and wake up with another pain instead.
Quick word about my consultant/surgeon at this stage. He is my hero. Definitely want him to be Iron Man in this story, although he was always my favourite Marvel character. Why is he my hero?
1) he decided to do the PSA test which started this journey - best bad news ever was down to his diligence
2) he moved mountains to try get my seen quickly. when I moved the date he decided to come in from his weeks holiday to perform the surgery. I was his only patient
3) he took 5 hours on the surgery not the standard 3. He managed nearly full nerve sparring (results yet to be seen but who cares! improvement on the planned one side only) I actually think the fact he only had me to see he took more time than normal. Not saying surgeons rush to keep on top of the list for the day, but just got a feeling.
Oncology nurse came to say hi. I cried. I just didnt want to talk to anyone about anything. Enema done and dusted... wow they are efficient. Next up a series of visitors, I sign my life away and bingo I am in a cold theatre (cant see Jarvis sadly) but I start to cry again as I drift off. I hate knowing I was scared and crying when I went under. I wanted happy thoughts and something to look forward to and focus on if I needed when under! weird but hey. I am here now and all is good.
Post surgery - ouch! not sure where it hurt most but OMG! I was under for longer, didnt get out of bed that day and this was my first regret looking back. I will explain later why.
Iron Man visited later (consultant/surgeon) and said surgery went well. Used a different scope (30 degree) whichw as first time ever used as my spine curved blah, blah for some reason but good views of stuff etc... I was not listening. I head what I wanted to hear. Prostate was out, saved more nerve than expected.
Now everyone has a different pain threshold. Not sure what mine is (other than I know I cant touch hot things like plates where my kids can tough them easily! I have sensitive hands, don't judge me) but I was in agony. I now know this was part surgery but mainly bloody gas!
Best medicine, get up, walk, break wind and burp.
I stayed in for one night. Was offered two but thought easier at home. I was wrong. the morphine fairy doesn't come in the night at home when you wake up feeling like you have been stabbed in the stomach. The first night I was a sweaty mess - can't get comfy and hospital beds actually better for sleep than home I think. My theory was no one will wake you all the time at home to check your blood pressure but I actually realised I was awake all the time anyway so didnt matter.
The following day I was in the most amount of pain I had felt. I was walking bent over forward and could not straighten up. I called hospital thinking I needed some miracle injection or painkiller but was prescribed walking a mile a day and peppermint tea. WTF! I came some with paracetamol and ibuprofen which I thought was harsh and now told to walk it off. guess Captain America could so I was back on with him again and walked around the garden for 20 minutes every hours for the first day. Few burps but OMG the pain. I then overdosed on peppermint tea I realised. When I lay down all I could smell was peppermint and felt like acid reflux but a minty version all bloody night! but I had IBS remedies to relieve bloating and trapped wind. I will never know what worked and don't care. Within 2 days of the walking, IBS remedy and peppermint tea I managed to break wind. I texted my wife and said this is the only time you will be pleased to know I have farted. This was followed by a text a day later with the amazing news after 4 days I had done a poo (poo emoji in full effect). I was told if I had walking after surgery this would have been less bad! who knows but if you can, walk, burp and fart in hospital as much as you can... but when home, don't be surprised at the pain and know it will pass - literally and keep walking.
Guess we should chat about the catheter briefly. First two days - didn't really notice it. Was in too much pain or just wasn't registering it. Day 5 post surgery and walking more and its really, really annoying. I cant find a comfortable place, height, position for walks and it tickles the end of my penis too often when walking which is actually a tad painful. Was worried I was getting an infection so called the doctor and amazingly I got antibiotics to avoid it if it was setting in. I also now find when I go to the loo (voluntarily to sit down I can feel myself peeing normally and it hurts as there is a bloody great big straw in there blocking the urine! so I stand up and dribbles ride down the tube! getting used to catching them now on toilet roll but its annoying. Final bit, I now can feel the tube all the time as I walk and feel sensitive to the touch under the skin, so rubs on underwear when walking. I don't think infection but do think my body is saying Hey, time to get this bad boy out and start peeing your pants...
Day 6 today and clearly feeling better as I am writing here, have the attention span I used to have and have an interest in trying to help others. I always said to myself I would as if you suffering or a partner is reading on your behalf like mine does, they might come across this and take a glimmer of hope, reassurance, familiarity. It doesn't matter, this is all I can do and I am happy to do it. Also feels good to write it down and remind myself of my journey.
I will try continue the story. Got the joys of catheter removal and testing in two days time. Exciting!!! and then I think the great unknown. From what my well read wife tells me I have no idea what to expect from a post catheter era. I know I will have some wet pants to deal with but again I am bargaining with myself again and saying 'yeah but no catheter to deal with' although watching Top Gun Maverick last night at the cinema was a first time ever I have no had a wee on the way in, a panic wee when the trailers finish and one after the movie. Never want to wee mid film and miss a good bit! but as all good Marvel movies go in phases I am entering the next phase and know there are many more to come. Continence, histology, first PSA test are all acid tests and will either knock me back or push me forwards. I expect a little of both and no longer have Captain America optimism at every step of the way, but a reassurance Iron Man has my back and my wife is at my side.
Final bit and would be wrong of me not to talk about my wife. she is my hero too. In the Marvel Universe I am not sure who she is yet, might come back to this, but I have felt tremendous guilt for her. We met, got married and I was diagnosed with cancer 1 month later! surely this is not what she signed up to. I felt I had let her down, if she has known would she have gone through with it, even dated me. This is where I think I get my small violin out the most and blame myself. But I know it is all pointless and as she said, at our age we are going to face more health issues, scares and thank go we have each other to help, support and love. She is of course right. We are nearly on the same page/stage now I guess. Post surgery, looking at the next phase together and preparing as best we can. In my wedding speech I said I would have not gotten through the last few years (divorce hell) as well without her by my side and would be eternally in her debt. I then get cancer (although clearly already had it) and she once more is by my side, in my corner and supporting, helping, loving me. Can you be in someones debt for two eternities? not sure but I think I am.
Thanks for reading and I will let you know what happens next.