The Day After

The hardest thing was getting up on the morning after and not having anywhere to go!! I had spent the better part of every day for the last two months at the hospital….had just bought another 2 week parking pass on Saturday. What do I do with myself now?

Caregiving has been my life for the last almost 4 years. What now?

Monday Apr 21, Easter Monday was still a stat day for many places, including where Ken and I worked. I couldn’t call them until the next day.

I went online and tried to decide how I would tell my Smart Patient and KCC friends about it.

What do you say…..how do you say it? Do they even want to know…..I mean its awful news to hear…..they are either patients or caregivers themselves and they could well be them in the same boat. Should I share it? Who wants to be reminded of what the future could hold for them??

I did post it. Replies started flying in. It was very sad but incredibly uplifting in a way to read them all. These were my friends that really understood what life had been like for those years for Ken and for me…..they just knew.   More tears.

I am addicted to those websites…..but now I don’t need them, do I. But I still feel like I know all those people, my online friends….perhaps there are still going to be questions that I can answer for someone. I don’t know but I have checked those websites everyday for a long time, it’s a habit, a routine every morning…..maybe I’ll give it a rest for a day or two. What more do I need to know now? Absolutely nothing, at least nothing that will help us. Do I want to know about a new trial or med that came along to late for him? I really am happy for all those people that have good scans and great results from meds….I don’t want anyone to go through this. Maybe telling others that are struggling at the moment that I understand, I really, really do understand, will help them, comfort them? Maybe I’ll just remind them of what could lie down the road for them…..what to do, what to do. Again I have to tell myself to stop thinking about this…move on. Go back to the pictures, clean the bathrooms, anything……

What should I do now? I don’t really have to get dressed, if I don’t want to. I can have yet another cup of coffee….which I don’t need. I could certainly clean up my house…..who would have thought that one person could leave such a trail of mess behind them. I had been going to the hospital by 9 or earlier each day, going to work from 1 – 5 then back to hospital until 7 or 8, then home. So I guess there really wasn’t that many hours left in the day to do anything or at least anything other than eat and sleep. Now I had all the hours in the day to do whatever…..

Why am I not having a breakdown…..isn’t that what I’m supposed to do? My heart is breaking and the tears flow freely. But is that all?

I started to reflect back over the last few months and realized that what is saving my sanity is the fact that Ken had not been here, in our home, for over two months! I was now used to coming home to an empty house, him not being here. I hadn’t had to grocery shop or think about dinners and other meals. I hadn’t worried about whether he was up and eating his breakfast. I didn’t have to phone at 12:30 to make sure he got up to have his lunch. I didn’t have to worry about phoning home and him not answering the phone…..had he fallen, passed out or ???

If he had been sitting at the table the morning before having his breakfast or in his recliner watching TV the night before, I’m not sure I could be coping with this…..very strange feeling.  I was thankful he was in hospital.  No, no I wasn’t…..that’s a stupid thing to think, isn’t it?

I did eventually get dressed and started going through pictures….we will definitely be having a Celebration of Life and we’ll need a slide show, right? My son came over, daughter got up and we started in on the pictures. This task is so incredibly therapeutic.   We cried a lot. Why Dad….what did he ever do to deserve this? Why my husband…….why, why, why. We’ll never know and can’t even begin to dwell on it…..there is no answer. But we can cry and remember and we did.

The hardest part of the pictures is seeing him like he was…..when did he start to change so much? He was such a good looking guy, when did he turn into an old man? I know I knew he’d changed, how could I not, but that much? It made me think more about remembering him the way he was bc (before cancer) and not the way he was ac (after cancer). What a wicked, evil disease……

I can become a little obsessive with things and that is what happened with the pictures…..soon the kids were gone off doing other things and I was a mad woman going through old photo albums, going through CDs and those little card thingies from the cameras. Which pictures should we use, how many, ones with only Ken or ones with others, should I crop myself out of them. No, we need ones with the kids and me and all our family and friends. That’s why Ken was so happy in those pics….he was with people he loved, they needed to be left in. They would like to see themselves with him too, I’m sure….then they’ll remember that Ken too.

Life was so good…..did I appreciate what I had? I did, I know I did and was thankful for everyday, even bc. But what else should I have done…..is there anything else I should have done? Who knew what would be in store for us down the road. You can’t prepare for something like that without even knowing. Did I take things for granted, like that we’d be around forever? There must have been something else I could have done to make things even better than they were bc. Just stop….stop thinking about things. It wouldn’t have made any difference, it wouldn’t have stopped Ken from getting cancer.

More people phone, more food arrives, more flowers arrive.

My kids cleaned up some of the house while I did the pics. I’m sure we ate but couldn’t tell you what or when. Craig went home at some point, but when? It was dark out now…..where had the day gone? I was still sitting at the computer with albums and CD’s all over the place. Time for a glass of wine (or two).

The pictures made me cry. Why? They are such good pics, so many happy times! I want that back……I want it all back, I want Ken back! How could this happen??? Why us?

I looked at the time on the computer….it was 2AM! I needed to go to bed…..gravol is my best friend now, it makes me sleep. I definitely need sleep. I will feel better after I sleep, right?

L.

THAT day

Everyone comes back to our house. My sister-in-law makes coffee, we all sit and stand around the table. Nobody said anything for a few minutes…..everybody is kind of numb.

Just what should we say?

I guess I need to phone the funeral home. I have to phone our friends but I need that coffee first though. It’s only 7AM.

An hour later I start. Funeral home was very easy, they ask a few questions like did we make prior arrangements (ie First Memorial Membership…..no we didn’t) Name, age, where is he now and is he to be cremated or buried. They will arrange to have him picked up and we set up an appointment for Wednesday and that was it.

Phoning friends was tough but I really had to do it myself….maybe telling people over and over again helps it to sink in…..because it was so surreal.  People tell me he’s in a better place now and I guess it’s true, but it doesn’t help…a better place would be sitting at the table with me drinking his coffee!  They tell me he was lucky to have me…..that makes me feel good.  It’s so true that nothing anyone says can make it better but it’s good to know that they care.  It’s Sunday, so I can’t phone my work, I can’t phone his work and let them know….oh god, I have to go through this again tomorrow……..

It’s now around 10 and the brothers leave…..what did we talk about?? I can’t remember but it wasn’t all sad, I do remember laughter in amongst all the tears. The kids stay. One of them went to McDonalds to get breakfast. Our daughter asks if I want her to stay over. At first I was going to say no, I really think I’ll be OK but then think what about her…..and having company isn’t a bad thing. Son heads downstairs to the TV room for a nap. I go and lay on the couch.

The phone rings. It’s someone I didn’t phone but who had just heard so we talk and cry some more. My brother phones, he’s bringing food. Another friend phones, she’s bringing more food. The doorbell rings, it’s flowers.

My brother and SIL arrive and we have more coffee. I love all the hugs I’m getting. People really hold you tight for these kinds of hugs….they are real hugs. We talk about all the fun things, remember this and that, we laughed! It’s OK to laugh, isn’t it? Oh well, it was good to laugh, to remember that Ken always had a smile on his face…..he was a happy guy. He liked to laugh, he always liked everyone to laugh…..we remembered all his corny jokes and comments. You know….those ones that everyone laughs at but the wife, who’s heard them so many times, just rolls her eyes……lol.

The phone rings again, it’s our friend Bev (the first one I called this morning…we love Bev a lot….friend for 30+ years and always there for you). Are Linds and I still going to come for dinner? I had forgot she’d invited us for Easter dinner. Please, please she says…only a small group and we need to eat, right. I was afraid I might be a bit of a downer and didn’t want to rain on her party but she insisted no one (her sister, BIL, daughter and SIL….we know them well) were going to worry about that. OK, we’ll still go.

The kids and I start pulling out pictures, more and more crying. Then we laugh…remember that camping trip when the tent-trailer tipped over, remember the time on that trip when Dad drove over my foot, remember Dad used to make that funny face all the time. OMG…..that’s what he used to look like???? It’s been so long I had forgotten! More tears.

Our daughter went home to pick up some stuff, daughter-in-law arrives with the babies to pick up our son. Seeing the grandkids makes me so happy but then I think about Ken not seeing them again…..tears, lots and lots this time. They ask where grandpa is, why are you crying. The oldest is 5 so she kind of understands, the others are 3 and just about 1, so just don’t get it yet. That makes me even sadder…….they have never known the real grandpa.

Everyone leaves and I have an hour or so to myself. I can’t think…..my thoughts are so muddled. I’m almost cried out…..is that possible? What should I be doing? I think nothing…..at least not today.

Dinner was good and I’m glad we went.  More laughs and remembering. It’s not blasphemous to laugh, it feels good….a glass or two of wine doesn’t hurt either.  Ken would want us to laugh!

Now we’re back home….I am so tired it is beyond belief. It’s after 10PM and I’m exhausted. Hmmmm…..what’s going to happen when my head hits the pillow. Now I’m a little afraid to go to bed. Will I visualize him as I seen him this morning or am I going to remember the old happy, best looking guy in the whole world Ken?? I’m not leaving anything to chance and decide to take a Gravol….I know that will make me sleep. And it does. I crawled in and started to read my book, just like I have for years and years…..nothing seemed different except………I turned out the light and a zillion jumbled thoughts went through my head but don’t think I cried.

Up to THAT day

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!

One Week Ago Today

my husband of almost 40 years passed away. I am a WIDOW!! OMG…..that is the first time I’ve used that term, in reference to my self.

I’m not terribly good at writing in the sense that I can spell or use punctuation properly, but it’s a great way to get all those thoughts out of your head……and believe me there are many.

I can’t believe a whole week has gone by…..what have I done, what will I do???

I think the best is to go back to the beginning. How did the last 4 years of MY life change? I say MY because now it is just ME. Yes, of course we had children, but they’re grown, have children of their own and have busy lives. They grieve too because they loved their Dad and Grandpa more than anything in the world, but they aren’t really alone are they.

L.