At first , when you are diagnosed with any type of cancer, you will find amazing support. People will come out of the woodwork, and send flowers and balloons to show their care. (I flipping love balloons) You will have soon much support and love, it will be mind blowing.
Once you have surpassed your ‘prognosis” people seem to think you are “cured” or in “remission” and that you don’t need any support anymore. They think you are fine. This is NOT true. It seems to get harder the longer I live. There seems to be more emotions to deal with, not only yours but your close family and friends too.
They have all been on this hellish journey with you, they all expected you to be dead by now, but you aren’t so where does that leave them? Of course they are happy that you are still alive and breathing, but this isn’t how it was supposed to be was it? What exactly is gong to happen now? “Who knows” is the answer.
We are living in limbo land, no mans land, the abyss….. You have to make some sense of it, somehow……
The Hubs is having a hard time right now, he is short tempered, he doesn’t have a lot of patience, he is struggling. Helping him to see that there is a problem has had its downfalls. He began to drink too much, even on a school night, he became someone I didn’t know as never having seen this side of him.
I would ask him what was wrong, and he honestly told me that he didn’t know, he was just enjoying ‘drinking”. I feel it was an escape for him, an escape from this never ending hell that we have found ourselves in. Too scared to plan for the future, as the future isn’t promised to me. Too frightened to speak about what was really on his mind, incase he upset me. This perpetual circle, going round and round and round….
If does seem funny, as my life is now filled with purpose and meaning. I have found my place in the world, for now. His life is not how he expected it. How do you cope with being told your wife is going to die…. and then she doesn’t? That has to mess up your mind at some point. I don’t think he is sat there with a voodoo doll and pins, and I know he is so grateful that I am still alive, it just doesn’t take way from the fact that he was told he would be spending his life on his own, the outlook was grim.
Its funny how your diagnosis can have such a traumatic affect on others. It isn’t just about me, its about everyone who knows me. Who cares for me, who loves me. And whilst some can deal with it, others can’t. I have to accept that.
I recently reconnected with a friend who I haven’t seen for over a year and a half. I always though that I had done something wrong. I hadn’t, it was that she couldn’t cope with any more sadness in her life, having lost a few members of her immediate family, and distanced herself as she didn’t think she could cope with me dying as well. It made me so sad to hear this. She had to do what was right for herself and I totally understand her reasons.
So back to the Hubs.. he reached out to his boss, and is waiting for counselling. It seems silly that I’m doing ok at the moment, and he falls apart now. Yet for two and a half years he has remained strong, he has remained at my side. Through all the health issues, the Raynaud’s, the Erythromyalgia, the moderate heart failure, the pancreas and the liver not playing nice, these are all reminders that Im not well. These all impair my life, which in turn affect his life.
We have the reminders that the cancer WILL come back, small cell is sneaky, fast growing and aggressive. The PET scans every 3 months so that when it does come back, we can jump on it fast. My stoma and bag serve as a reminder of what we have both been though. I cannot imagine what it must of been like for the Hubs, having to watch me go through something that he couldn’t help with.
One thing that I am so grateful for is that we talk. It may take some time but we do eventually get there. He is able to tell me how he feels, how helpless and lost he feels. How it isn’t fair.
Cancer isn’t fair! We look to the future with a small amount of hope and faith….
My Big Fat British Bladder Tumour 