Hi there, I'm really hoping from some help/experiences/perspective on this.
It's been over a year after I was told my cancer was in remission and the chances of it coming back are very low and I'm only now beginning to process what happened. I know I should be happy but I have these moments of real sadness and exhaustion and it is all hitting me for the first time.
I was diagnosed with bladder cancer while I was still a student at University aged 21 and it was so hugely unexpected. I had a cystoscopy under general anaesthetic where they were very surprised to find a tumour - the tumour was removed (TURBT) and I was given mytomycin. I thought and had been told that it would just be a check-up to rule problems out. The next day, in some pain, and with a catheter in, I continued working on my dissertation which was due that week, and then I went back to halls and continued studying. I never took a break, never really processed it, barely even realised I'd been given chemotherapy to be honest. The pain was initially so bad whenever I went to the toilet I would black out, and I was bleeding - but I just carried on as normal. The week afterwards, I met the surgeon again who, very gently and kindly, told me I'd had a medium-sized, aggressive but non-invasive cancer. He rang my parents to explain it to them on the phone.
Later that week and for the next three weeks, I sat my exams. I vividly remember telling myself 'If I let myself think about this, I will fall apart and I can't afford to fall apart right now.'
My close friends and boyfriend knew and were kind but they were also sitting their exams and, to be honest, I don't think they knew what an earth to say. My parents were concerned and worried but I kept brushing them off. Basically, I never really talked about it. I never let myself process it or be sad.
Every 8 weeks, I had another general anaesthetic (I think because of my age, the surgeon didn't want to do cystoscopies any other way), and sometimes more mytomycin was put into my bladder again because they had found something else so there was more pain and more bleeding. But then I had 6 months of clear check-ups (all general anaesthetics) so I was told to wait 6 months after which time I had a 12 month check-up that also came back clear - phew! Because of my age that was literally it and I was discharged with no need for any further check-ups. I was just very relieved, very glad it was all over. I didn't ask any questions - despite the fact the mytomycin had completely messed up my periods (I now bled for months at a time), which I mentioned.
Because the mytomicin was put into my bladder, it was right next to my ovaries. I had anovulatory bleeding so much of the time and was told it might cause me to go into early menopause. It was awful, but I never saw a doctor about it, never had anyone to talk to about any of it. So many doctors kept saying that only older men get bladder cancer, but I was 21 and female and that made me feel more alone.
Anyway, now it's been a year after that and it keeps hitting me and making me feel sad and depressed. I feel like it's too late to talk to anyone about it? Also as cancer goes, I had things so incredibly easy, I feel I'm not being fair to complain when so many people have it so so so much worse. I just feel very alone. Sorry for the long rant. Any comments or advice would be hugely welcome, I feel like people here might get it?
Hi , my goodness what a rollercoaster you have been on. As Karen says, cancer is cancer no matter how you deal with it and everyone deals with it completely differently.
I am sure posting this post will have helped you, when we get a cancer diagnosis we are given an invisible rucksack that we unknowingly collect ‘stuff’ and fill the rucksack up and eventually the weight can make ‘living’ hard…… we all need to take the rucksack off from time to time and unpack the stuff. We will put some of the stuff back in and carry it for longer but the more we unpack the lighter the load.
How do we unpack?
The Dr Peter Harvey paper that Karen posted is a great tool to identify the milestones in the post treatment journey and identify the steps in recovery helps a lot.
Do check out for a local Maggie’s Centre as these folks are amazing. Their ‘where now’ course is excellent and worth doing they also do great one on one support.
I am n Inverness and people will happily do a 4-5hr round trip to visit our local Maggie’s, that says a lot about the benefits the support is.
I have been on my incurable blood cancer journey for over 22 years now although I eventually achieved full metabolic remission back in 2016 for the first time in over 17 years….. the hope now is I will die with my cancer not because of it.
My daily goal is not to let my cancer journey define me but for me to control and define my destiny as best as I can so my focus is on living in the now and looking forward in anticipation.
The post treatment life is like driving a car. The big windscreen shows the future, the past is in the little mirrors and is getting smaller and more fuzzy as we move forward.....if you concentrate on the past you crash.
We are around to chat at any time ((hugs))
