Bladder Cancer – Where it all began

I will never forget that day.  The day my partner was told he had a suspicious looking “mass” on his bladder and it was “most likely” cancer, a 95% chance no less.

I have never seen the colour drain from someone’s face so quickly, or seen someone literally age about 20 years in a matter of seconds.

Really nothing can ever prepare you to hear those words.  It’s completely overwhelming.  Nobody likes the C Word – your immediate thoughts are death and total panic. The world goes black whilst you try to comprehend what you have just been told.

It all started for him 5 weeks before that appt with some kidney pain for a day and night.  I heard him up in the night but didn’t think much of it. I was in London the following day for work so was up stupidly early, and didn’t want to disturb him whilst he slept to check if he was ok. I assumed he was. Later that morning he messaged me at work to say good morning,and I asked him how he was and he came back with “I’ve got an ow”.  For him to say he felt unwell meant he really did feel unwell!

I suggested as it was his day off that he call the doctor and get an urgent appointment.  He did and the doctor saw him that day (no mean feat for our doctors surgery where you can wait 3 weeks for an appt!).  The doctor felt it was most likely a kidney infection or possibly a stone and requested an urgent Ultrasound exam.  He noticed there was some blood in his wee, but it was trace and couldn’t be seen by the naked eye, but again thought it most likely a stone.  So a few days later the appt for the Ultrasound came through and 3 weeks later he took himself off to the hospital for what became the first of many hospital visits.

My partner is very direct, he doesn’t like to “flower things up” (in his words) and the same goes for people dealing with him. Some people don’t find that easy or may be uncomfortable with that.  The Ultrasound Technician certainly  was when he asked her outright what she had seen?  She squirmed and tried to brush him off with “you may need to come back for more tests, but I don’t see a stone there, but I can’t say for sure”.  So he thought nothing more of it and came home.  3 days later on the Friday evening the phone rang.  It was our GP.  She wanted to speak to him and he was out at work and uncontactable at the time.  I asked if I could take a message and the response was “oh just get him to call me back on this number asap, it’s nothing to worry about”…………

Well I don’t know about you but if anyone says to me  “ there is nothing to worry about” then you most definitely worry about it!  He tried calling his GP back but she had gone home for the evening, so we had a nervous wait over the weekend.  I say “we”, it was more me who had the nervous wait, he was still convinced it was a stone.  By now the pain had gone away completely and he was feeling fine.  But I had a bad feeling about it all.

On the Monday he rang and left a message for his GP as she was with patients.   So he went off to work.  At around 2pm he got a call from the Bladder Nurse Specialist at Frimley Park Hospital asking him to go in and see her on the Wednesday for an urgent appointment to discuss their findings.  Again being direct he asked her why.  He also explained at this point he still hadn’t heard back from his GP so he had no idea what was going on.  Again she squirmed slightly and evaded his questions and just asked him to go in.  I told him I would go with him and he told me not to take the time off work as it probably wasn’t serious!   Well serious or not there was no way I was letting him go alone, that’s just not the way I work.

And that’s how we ended up – sat in her office at Farnham Hospital early on a Wednesday morning having a massive bombshell dropped on us.  The colour drained from his face and he had his head in his hands. Through the shock and the tears he managed to ask what would happen next and what his prognosis was?  Would he die?  Would he need chemo?  There were so many questions running through our heads at the time. I didn’t know what to do.  I am the soppiest person you will meet who would cry at literally anything remotely sad or happy.  I was struggling to compose myself.  She explained that things would move quickly and he would be taken into hospital in a couple of weeks and they would remove the tumour, send it for biopsies and give us the results 2 weeks later.  This surprised us – it may not seem like a long time but we both expected to get results in a few days. In fact it’s anything but quick.  They have to be extremely thorough and it takes time to work through all parts of the tumour.   For us unfortunately it took 5 months to get a confirmed diagnosis – but I will come back to that in another blog!

So after having some more tests and bloodwork done before we left (yep I know all the medical jargon now!), we both sat in the car in shock.  Neither of us knew what to say or what to do.  There were literally hundreds of thoughts and feelings going through both our heads. It was only 9.30 in the morning and we had to drive home and I’m not sure either of us were capable at the time.  When we got home we just sat in the car for a few minutes trying to take it all in.  All I could say to him to reassure him was that he had my support without question and that that whatever will come will come and we would face it together.  It was all I could say.  I heard so many stories of partners who couldn’t take that kind of news and just up and left their partners.  I wasn’t going to be one of those people.  We never got married but have been together 13 years and the old adage “in sickness and in health” rings so true.

What on earth do you say to the man you love who has just been given that news?  I had no words of comfort because I had no idea what we were dealing with.  At this point I will say it’s strange what you do when you are in shock….. I don’t know if it was the adrenaline or the shock or both, but we decided we were starving hungry and went to our local café and had a full English breakfast!   It was the weirdest half hour.   However after my father died 20 years previously, I realised very quickly that as much as you want the world to stop whilst you take onboard your own pain life still carries on. Groceries need to be bought and bills need to be paid and work needs to get done.

Once we got home we sat on the sofa for a few more hours crying and trying to get some knowledge quickly on what we were dealing with.  At this stage please don’t go all Doctor Google.  Only google reputable sites (for us it was McMillan and the Fight Bladder Cancer Site.  Otherwise you will drive yourself mad!  However gaining knowledge on what we were dealing with helped us in the long term and although it was still scary it was much less scary when we were empowered with knowledge.

That afternoon we knew it was time to tell a few of our nearest and dearest.  So we made respective phone calls to our mums, which was a really hard thing to do.  I could hear his mum sobbing on the phone.  We just tried to reassure them that things were in hand to get rid of the tumour, see what the prognosis was and work out a treatment plan.  Then we told our closest friends before we went out in the open with it on social media.  Again not easy news to break.  We knew we would get mixed reactions, some were very strong and helpful and rallied around us.  Others crumbled and couldn’t handle it and stayed away.  That really hurt.  Still to this day his closest friend from way back when has not even acknowledged or responded to his news.   That was heartbreaking for him.  Cancer does really sort out the men from the boys!  We have since heard every cliché in the book from well meaning friends and acquaintances.  My favourite was from a colleague who said “oh he will be fine, my partner had breast cancer and she’s fine now” – erm ok, that’s your medical opinion/reasoning is it?  We have had to bite our tongue on many occasions!  People mean well but don’t think before they speak!

The next few weeks went by in a blur for both of us.  A horrible cocktail of anxiety, sleepless nights and sheer panic.  On reflection I think it’s something you can’t avoid. Until you know what you are dealing with all you can do is empower yourself with knowledge on the subject and hope for the best possible outcome, but prepare yourself for the worst.  I felt (and still do) feel “survivor guilt”. I would take it from him and have it myself in a heartbeat to save him this pain.  And I know that I am the “lucky one” so far as I am not the one with the tumour/s, but he’s my other half so I feel like I may as well have it to.   I find that hard to explain.

They really were some dark days.  I couldn’t begin to imagine what he was going through and I couldn’t face anybody as it was still too raw and unknown.  We both took a few days off work to digest the news, recover from the shock and get our heads around it.  For the subsequent time prior to the op we both returned to work.  I was lucky as I could work from home.  I still wasn’t ready to face people.  He wasn’t so lucky as he is a delivery driver for an online food retailer and is out seeing people all day.  But we both felt we needed to return to some kind of normal in-between the fear.  This became our mantra.   We both needed to take our minds off it otherwise it was all consuming.

I will always remember one of those days, when he came home from work and I asked him how his day had been.  He just looked at me with a pouty bottom lip and said “I had a bit of a moment at work.  I was waiting for a customer to come home and had too much time to think about things, and I ended up crying in the van”.   That was crushing to hear him say that.  He was struggling and understandably so.  Also it’s a note to all you online food shoppers, make sure you are home for your delivery slot!  I digress!.  It all caught up with him and just became too much.   Since that day he has had angry days when he has thrown things across the kitchen and calm days.  Never was the old  cliché “a rollercoaster” so damm true!

We also had to come to terms with the fact that this is it now for pretty much the rest of his life.  He has immunotherapy treatment for 3 years (assuming his bladder and he can tolerate it), regular cystoscopy operations to check for recurrences. MRI scans, CT scans and always the fear it will come back or metasize somewhere else. He has already had a couple of recurrences before the treatment started and recurrence rates are 80% so again the odds are against you all the time.  So the fear is always there. It’s hard to think long term or make plans right now and life is on hold.  We have had to miss family events and postpone holidays and nights/days out because cancer doesn’t run to a schedule.  Hopefully in a couple of years we can press the play button on our lives again.  In between all the Hospital appts and ops we just get on with normal life as best we can.  We have good days and we have bad days.  Our close friends and family have been a godsend to us and we cherish them all for their love and support.

For anyone supporting a partner going through this my heart goes out to you. It’s an incredibly challenging time trying to juggle your own emotions, their emotions, work, family life and every day brings something new to the table. However it does have the ability to make you stronger.  I was a mess in the first few weeks, but I became determined to get my shit together.  I had to be his go to person for support.  I no longer cry at his appts or his diagnosis discussions or post operations.  I now record them all using an app on my phone and prepare myself with a list of questions or trust me you forget.

I managed to pull my shit together because he needs someone strong next to him to help him through it.  I found the Headspace App which was a godsend for me, Kalms which at one point I think I was eating like smarties and my work were really very supportive towards us both.  They gave me the time off I needed to try to come to terms with the news and for hospital appts and operations and times I have needed to be home.  I am lucky as not everybody has that flexibility or understanding colleagues.  I have my moments believe me, sometimes in front of him because I am only human after all.  I have had my own life threatening stuff to deal with in the past and he was by my side every moment of that and got us both through it. We are a partnership and that’s just how we roll.  The only appointments I don’t go to are his immunotherapy treatments as they are short appts and he usually goes after work and is fine to drive.  He doesn’t need me there.  He needs me after those appts for the side effects and helping him so that’s the deal.

Currently his prognosis is reasonably good but we both know that this can change at ANY moment, it’s not a given and he will never be given an “all clear”.  It has taken us almost a year to accept that, but we have come to terms with that now and this is now how life will be for us now.   We are almost a year in already, but our little jaunt on the cancer trail is only just really beginning.   But we are still here and we are still breathing, just a little more deeply than we used to!

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