The Five Week Wait...

It has been a funny old week. I have finally found some time to get it all down after a couple days recovery because a combination of  a really rough month, the TURBT surgery and a chemo wash straight after (a new one for me!) mean that it has been well and truly man down over here!

I'm not gonna lie, the week, or weeks, leading up to this surgery were  bloody tough to be honest, like really tough. In fact I definitly didn't realsise just how tough until all of a sudden it was too much. A minor parking dispute with a neighbour was the straw that eventually broke the camels back and the night before my surgery everthing that had been piling up on my imaginary plate came crashing down on top of me. The wave of emotion was so huge it felt like it took over my whole body. I was crying, shaking, hyperventalating. All I could feel was this huge ball of saddess sitting on my chest, my arms and legs felt numb and I felt utterly powerless. My brain was blank and all I could think about was how tired I was. 

Finding out my cancer was back was one thing, getting my head around bladder removal was another. In the five week wait for my surgery my mind was looking for answers to questions about what our new lives would look like. How long would I need to recover and what sort of time frame we we're looking at for getting back to our new normal. I was coping with it but it was pretty all consuming, especially when I started to find all the horror stories about the possible side effects and recovery complications that come with such a major surgery. It was starting to look a bit scary!  

The very same week we started Oscar's settling in session at his new school as he starts in September. I knew it was going to be another big challange as it took a while for him to get used to playgroup, but it was a little bit worse than anticipated.  It was a couple of days after I'd received my results and our heads just weren't in the game. We left it too late to think about timings, we tried to prepare him but basically got it all wrong and just stressed him out instead and then to top it all off we were running late! The whole thing was a disater, with Oscar having a huge meltdown at the school and Tom having to be the only parent to stay at the session. Then to make matters worse one of the parents in the new school Whatsapp group (you know, the one we were repeatedly warned not to join!) decided to draw attention to it for all to see! 

I can accept that all these things are just a part of life, and I tried to remember to cut myself some slack because we were going through a lot and these people just had no idea. But then later that same week we expereicned some really rather unthinking behaviour from people who did know what we were going through and just didnt seem to care...and that hurt on a whole new level!

Every time something new came up I would just repeat the same phrase: "Hey, it is what it is, we've got this!" and I genuinly belived that we did! However I also noticed something changing in myself, things that would have once felt like a really big deal began to fall away. I could no longer give any band width to small problems, small talk, pretending like everything was fabulous when it really wasn't...I just had no brain power left to engage. 

I have always promised myself that I will not let my cancer make me bitter, only better! Cheesy but its somethimg that's really important to me and I did briefly wonder if it was just enevitable that eventually I wouldn't be able to keep that up! What I actually think is happening is that I am finally FINALLY starting to respect my own boundaries and stopping being such a bloody people pleaser all the time, which actually feels pretty liberating if I'm honest! So a small win! :) 

The really big thing that did keep me awake at night was the idea that all these big life things could happen all at once. How on earth could we possibly cope with a huge surgery and trying to make Oscar's transition to school smooth, stable and as happy as possible whilst I was totally out of action and possibly in hospital. It was a nightmare and I needed answers. 

So by the time  my surgery was here there was a hell of a lot of pressure riding on finally being able to make a plan. The day before is never good, this felt worse than normal, and then right at that moment when my anxiety was peaking a cease and disist letter arrived at our door from our neighbours, totally out of the blue. What follows is what I can only desicribe as a minor break down and an entire night spent crying until I could physically cry no more. I was completly exhaused. I had nothing left to give and it took everything I had left to get myself up at 5am and walk into that hospital for what felt like one of the biggest conversations of my life. 

What I can happily say, now that I am over the worst of the side effects is that I have some good news and most importanlty of all a plan...of sorts! 

The recurrances (x2) were small, like pin head small and I was also able to receive a chemo wash directly into my bladder straight after, which is supposed to be even more effective than the surgery alone and something that for various reasons I have never been able to have before. It is what is kicking my arse and making recovery harder this time, but I will take it for a little bit more hope! We are going to wait for hystology to come back in a few weeks time but provided that that comes back okay and low grade I can have my next lot of BCG in November and another check in January. So bladder removal is not off the table by any means but we will hopefully be able to kick it down the road just a little bit more so that we can get our gorgeous little boy happily settled in school first before we have to think about it.

Reading this post back it feels a little bit more whiney than I would like it too but please believe me this is not me feeling sorry for myself or looking for any sympathy... 

It is more about being real. I get told so often that I am dealing with it all really well, but I felt like I owed it to people to show that that is absolutley not always the case. 

Thank you for reading if you made it this far.

Katie :) xxx