After almost 4 years of this wild rollercoaster ride I can finally get off. That sounds terrible doesn’t it??Not all of those years were wild. We were very lucky in many ways that we still had a very good life up until the last year or so. We lived as we normally would have, albeit with many appointments, meds, chronic nausea which required very creative menu planning. We managed a couple of more great vacations, seen two more beautiful grandbabies born BUT……that big black clould was always, always hanging over us.Initially we had scanxiety but soon came to realise that stressing and worrying about the results wasn’t going to change what was on them……they were what they were, good or bad. We lived that mantra and it really worked. We took one day at a time, never planning too far into the future for anything. I’m not sure if you would call it stress but I found the most difficult times were Christmas and birthdays, Father’s Day etc…..would this be our last? Maybe because of that we enjoyed those all the more, I don’t know.
Ken started out as the “researcher”. I couldn’t understand how he could even read some of the stuff…..it scared the crap out of me, how could it not scare him? He said he had to know what to expect….why? Maybe you’re not like everyone else, maybe they can get rid of all this, maybe you’ll respond to treatment forever….maybe, maybe, maybe…
After he had his nephrectomy (Nov 2010) his nausea became chronic, it started to really impact his life, he lost weight and became more tired. He was a trouper though….tried lots of different meds for nausea, most of which didn’t work, worked for a while or had side effects that were worse than the nausea. I took over researching…..I became obsessed! I found Kidney Cancer Canada http://www.kidneycancercanada.ca/ , ACOR Kidney-Onc and then Smart Patients https://www.smartpatients.com/ . They provided knowledge, real life experiences. They provided the right questions to ask the Oncs, they truly saved Ken’s life for as long as it was.
He spent almost 3 months in hospital in 2011 because of a bowel perforation and subsequent abscess. He was happy to get home but the nausea was still there. Eating became a challenge, meal planning became a challenge. He could always manage dessert though, so that was a good thing, I guess. We added Boost to his diet in the hopes that he would at least get some nutrients into his system…..I don’t think zucchini muffins really counted as helping of vegetables.
He lost more and more weight, became less active and more and more tired. The sutent had stopped working so initially we were going to go onto a trial, but brain mets were discovered so that was the end of that! Started on the newer medication, Inlyta….yay! Not good at all, he lost a ton of weight initially, gained a pound or two back, came off the med for procedures, back on the med, more weightloss. We were now behind the eightball…..
It was impossible for him to put another ounce on, no matter what he ate. He had become weaker and way more tired. He had aged 10 years in a matter of one year.
He stopped wanting to go out, but encouraged me to go….which I did, I NEEDED to get out. It was never quite the same of course without him but I got a chance to escape. Not that we talked about it all the time, we didn’t have to, it was just always there…..nothing needed to be said about it, but it was easy to fall into a rut and that was kind of where we were heading, no matter how hard I tried to not let it happen. It just couldn’t be helped.
The last few months were very difficult for him. The weakness was terrible. Just getting in and out of the car…….getting to the car, became an ordeal. He said it was like having the flu, forever.
I was very worried when he was in hospital this time….I was very afraid he would not come home…and he didn’t. I wanted that so bad. We could have got people in to help, that wasn’t a problem, but because of having so many other issues going on and needing tests daily to monitor everything, it would have been impossible. He hated the indignity of being confined pretty well to the bed, pushing the button and waiting and waiting for a nurse or someone to come when he had to go to the bathroom. He absolutely HATED it. He got weaker and weaker in the hospital…..I knew this was not good. I found myself verging on a bit of hysteria I think…..my need to do more got more intense but what more could I do, what more could he do? Think, think, think…….
Then you get that phone call at 5:30AM in the morning……and you know.
That first day is surreal…..you are in a daze. How can that be…I was prepared. I’ve been prepared for a long time. Ha! You are never prepared. It’s like the life drains out of you when you hear those words……” I’m so sorry but…….” Then all of a sudden adrenaline kicks in…..get dressed, don’t worry about make-up, call the kids…OMG how are they going to deal with this, call his brothers. Yes, they all want to come to hospital. Rush to the hospital like a mad women. My only thought was that I NEED TO GET THERE BEFORE ANYONE ELSE…..I need some time with him alone.
He looked just like he was sleeping, very peaceful. He was still warm(ish). I checked to make sure he wasn’t really breathing or his heart wasn’t beating. This can’t be real, it just can’t be. They assured me he had died very peacefully…..his heart had just stopped. It couldn’t take the strain anymore. I know he wasn’t in pain, so I thank goodness for that. And I cried and cried…..stop, I thought pull yourself together…..then thought WHY…..I need to do this, I have to do this. I cried for him, for all the things he wasn’t going to be able to do, the grandchildren he wouldn’t see grow up, the pain and suffering and horrible quality of life he’d had for so long. Then a calm came over me……it was over, he was in a better place for him. Not for us, but it was never really about us and he was all that mattered. I cried then but with a sense of relief for him, not pity for me. I’m tough, I will survive. But I’m not going to even attempt to hold back my emotions……I will cry when and where it comes upon me to do so. I don’t have to explain myself to anyone. Now it is about me!