Kris Fuller, CancerWifeNinja sharing my journey... as my husband battles Stage 4 Colon Cancer.
|Posted by email@example.com on July 11, 2020 at 5:40 PM||comments ()|
We go to get his port cleaned in Armstrong. His legs are still pretty swollen. He lowers himself into the car and once he's in, he uses his arms to lift his legs into the car. He's discouraged that he's still so weak.
At the clinic, he hoists himself out of the car. Gingerly. Using his arms to assist himself up and out. Go slow, I remind. Constantly reminding. Constantly worrying. I watch him walk to the door before I park. Please don't fall, I silently pray.
I park the car and jog to join him at the entry. We wait to be buzzed in.
I'm so nervous all the time now that you will fall. I won't, he says. It's just annoying to be weak. I want my energy back.
I just nod. There's nothing more for me to say. I want his energy back too. It's not the first time we have talked about it. I just wonder when it will happen. And lately, I wonder 'if'...
|Posted by firstname.lastname@example.org on July 11, 2020 at 10:00 AM||comments ()|
I've been staying up until 11pm to help Ben with his PICC line meds. Not that he needs it now. He can wrangle his arms into any position to get his syringes lined up. It amazes me.
But sometimes, it's just the little thing I can do. And I find with his sleepiness, I want to ensure he is taking his meds... on time. Sometimes an alarm has gone off and we set him up, but if he dozes off, time passes and we are off track.
And then I'm annoyed that I'm not helping enough.
So, 11pm, you're mine.
Alarms ring constantly. Reminders for medications. Ding, ding. Another.
But 7am. Sigh. You're not my friend, 7am. I hate hearing you start to ring and ding. You're loud, obnoxious and we are just too tired for you. I hear Ben shuffle in the mid-morning stillness and guilt waves over me. Most mornings I just listen as he pads around getting what he needs. Because most mornings, I just can't do it. At my best, I call out, 'Are you okay with those?' but at my worst, I pull the covers over my head and hope he's got it.
|Posted by email@example.com on July 10, 2020 at 6:30 PM||comments ()|
Ben's feeling great today and he bakes
me us (...whatever, it's for me....) a triple layer chocolate cake. It's full of eggs, butter and looks amazing. Dolce ...something... his brothers recipe. Mmmm.
Mid-bake, we are delighted by a surprise visit. It's Shelley and David! They called but we didnt' answer and I'm so glad they took a chance. They stopped by and their timing is perfect for a quick back-deck visit. And even more perfect (for me, haha).. Ben is short on milk. I just went to the grocery store for cake ingredients this morning and am in no mood to go again. It's the perfect task for David. He's gone and back in a jiffy and I get Shelley all to myself. Their visit is short and perfect. Ben stays focused on his cake while the three of us visit outside... he is single-minded in baking.
The Wyatts leave and Ben does most of the kitchen clean up but leaves the floors for me. I notice his ankles- very swollen again. Of course I can do the floors. I think I should put your compressoin socks on you. He agrees and lies down.
The puffiness of his ankles seems huge again. How quickly they balloon up! Last night, it felt evened out, drained, better...normal. And now, after only an hour of baking on his feet, he has paid the price again.
There's a gentle bruising where his toes meet his feet- a line of burst vessels. The home nurse was here only yesterday and commented how much better they looked. Today is a new day and it feels like two steps back.
I help lift his swollen trunks up onto the bed, slide the stockings on and wrap his feet in our plush grey blanket. How are they cold in this heat?
|Posted by firstname.lastname@example.org on July 10, 2020 at 3:50 AM||comments ()|
Vince and Lizzie come out in their truck. I want Vince to install a support bar just outside the shower, and I've requested him and his drill. He arrives and I tell him, actually...no installation will be happening. I am ready for a support bar in the bathroom, but, in the end, Ben's determination to NOT have it installed wins.
I put my feet in his shoes and think about the independence he once had and how he fights for it now. I deicde let it be and tuck the bar under the bathroom sink. My niece and brother-in-law recycle my bottles and haul away a truck bed full of greens. Their act of kindness is wonderful and I'm grateful for family today. For their arrival, action... and, understanding.
|Posted by email@example.com on July 9, 2020 at 8:45 PM||comments ()|
I've lent my paddleboards to a friend for the week. She's thanked us by dropping off a huge meal of chicken, ribs, rice and Greek potatoes. It's around 3pm and the perfect surprise.
She gives me a 'thank you for the boards' card along with the food and I can't wait to see her again when she returns home. These little visits lift me up so much!I find I am leary to leave our house right now. My heart wants to be with Ben and ...in lieu of our recent injuries, I don't like leaving him at all.
The food is perfect. We are trying to eat tidbits throughout the day. Little bits to fill up Ben, but not huge portions to strain or upset his digestion. He samples 2 ribs and it's perfect. There's SO much food, I start creating portions for the freezer and save what we will eat for our 5pm and 7pm mini-meals.
|Posted by firstname.lastname@example.org on July 8, 2020 at 9:15 PM||comments ()|
We've had smooth sailing now.
Surgery and stitches are behind us.
Ben's delighted that he has an appetite again. And even better, he's put on 10lbs!
Yes, Fatso. Keep it coming....
|Posted by email@example.com on July 7, 2020 at 9:15 PM||comments ()|
PT home visit- that's the physical therapist. We talk about supports, showers, strength. We talk about how nervous I am- the watchful wife- and how to mitigate my craziness. One step at a time.
I want absolutely everything in the house. Bars, floor to ceiling supports, a motorized wheelchair (the same one as Stephen Hawking...cos, when you're cool, you're cool...), shower chairs, lifts. Basically, I want to bubble wrap Ben and toddler proof the house (But for a 6'2 tall man, not a 2 year old).
As for Ben? He wants to build strength, and he wants me to calm down. Both will happen, in time.
|Posted by firstname.lastname@example.org on July 7, 2020 at 1:20 PM||comments ()|
Chemo is postponed this week. I'm not surprised. With surgery and stitches, his body has a lot to heal. It's not our first postponement, but it's still disappointing.
|Posted by email@example.com on July 5, 2020 at 1:30 PM||comments ()|
Once home, I read the concussion literature and worry about his sleeping. I just want to keep him awake. I'm nervous and it shows. I read snippets to Ben but he assures me he is fine.
I'm sleeping in the living room with you. I don't want you alone. He smiles, yes, a sleepover.
To be clear, it's the day bed for me and the electric bed for him. It's set up like a kids B&B - 2 singles in the same room but it will allow me to monitor him. I have plans to stay awake and ensure his breathing and safety.
In the morning, I know I failed. I wake with a start and bolt upwards to look at him, to see if he's okay. He's already awake.
Darn, I say. I was going to stay awake all night and keep you up. I guess I didn't do a good job.
Oh, he says, you did a great job. I couldn't sleep at all... with your snoring. I was awake all night. Good job, honey.
|Posted by firstname.lastname@example.org on July 5, 2020 at 4:25 AM||comments ()|
Butterfly bandages on his chin and we are ready to go.
It's cut but not that badly. It was just a lot for me all at once. Ben's annoyed that we went back and I feel bad for making him.
The hospital team panders to me, but I don't care one bit. 'Well, at least your wife will have peace of mind.'... 'We don't want your wife worrying about you.' and this second visit becomes all about me.
I think that's best, as Ben is tired of it being all about him.
|Posted by email@example.com on July 5, 2020 at 3:20 AM||comments ()|
An officer just outside the ER saw us struggle and heads over to offer help. He asks if we are okay and I tell him, 'We just left emerg, but now we are going to go back.' He offers his arms and together we help Ben up. He walks beside Ben, steadying him on the right side and I am on the left side. We get back into the ER and I thank him.
The nurse is surprised to see us.
Oh my! she says and I fill her in. Well, let's get you in that same room- we haven't cleaned it yet and we will see if we can get the doctor right back for you like it's the same visit. You poor guys!
|Posted by firstname.lastname@example.org on July 5, 2020 at 3:05 AM||comments ()|
As we leave the ER, I am hovering. I know it. Slow down, I say. We aren't in a rush. I know he just wants to get home but I feel he is going too fast.
There is a slight incline in the sidewalk and before I know what is happening, Ben is down...on the sidewalk. He stumbled on his shoes, he says.
But what I saw was a faceplant into hard concrete. He didn't even use his arms to stop his fall. And I... I couldn't catch him.
I can't believe we're here. Quickly, I sit with him on the pavement, fighting tears. His chin is cut and he's moving to get up. Stop. Please stop. Just take a moment. Are you okay? Just sit here with me. We're okay. We are going back in.
No, he says, I am fine.
Your chin is bleeding. You've fallen twice tonight and I am not fine. I just need us to go back in.
|Posted by email@example.com on July 5, 2020 at 2:50 AM||comments ()|
The doctor arrives and Ben gets six stitches in his head.
I take photos (by request) again to show him. The cut is just behind his ear and he can't see it. He's genuinely surprised by the size of it. My photos from home were not very sharp in the mad dash!
He's cleaned up and checked out. It's just about midnight and we head for home.
|Posted by firstname.lastname@example.org on July 5, 2020 at 1:55 AM||comments ()|
As we wait, I notice the time. It's just after 10pm. Damn. Ben's next meds are at 11pm and I have a feeling we won't make it home by then. It's a busy Saturday night in the emergency department. At 10:30 I talk to a nurse about the cancer meds. She tells us she will sort it out, but she gets busy and forgets.
At 11pm, we have not been seen yet and my concern for pain meds is growing. We have learned, we need to keep his pain under control. I leave our room and loiter in the epi-center of emerg. Nobody makes eye contact with me. I stand quietly, searching for a person to acknowdledge me. I don't want to interrupt or make a scene. Everyone is bustling, talking, moving, quick. I wait for 12 minutes without a word.
Come on, Kris, I say to myself, say something. By 11:15, get this done. I take a few tenative steps, where am I going? Who am I looking for? There is a swamp of medical professionals in front of me but they are all engaged.
I see two paramedics in full facial protection rush someone in- they're wearing head visor-masks and this surprises me: breathing masks. They remind me of the mask Ben wore when he was working with asbestos- full coverage, hot, uncomfortable and serious. It's shocking but with COVid still on the loose, I understand it. I stare at the oddity and strain to listen as she hisses out her report through the mask to the ER doctor.
I only stand for a moment, then see a person in scrubs standing alone with her clipboard. I pounce. Sorry to bother you... but my husband needs his chemo pain meds... What luck! It's the nurse who admitted us and was going to get them at 1030. Oh! She says, yes, yes, it's been so busy but I will do it now. Oh, please, thank-you, he really needs them on time. As soon as you can, we really appreciate it.
By 11:20 he has his medication. Or at least one of them. The other one is not permitted in the ER. It's only by prescription so we must wait until we are home. But half a job is better than none.
I hope the doctor sees us soon.
|Posted by email@example.com on July 5, 2020 at 12:35 AM||comments ()|
As soon as I feel we can relax...I hear a loud 'thud' and I jump up. I ask if he's okay... but something just doesn't feel right. I tell him 'I'm coming in'. He had a hot shower to warm up and it left him lightheaded afterwards. He fell over and I walk in to find him on the bathroom floor. His head has a cut, but it doesn't look good. At all.
Heads bleed a lot. Apparently, it's known. But in that moment, it was shocking. It felt like a lot. He was calm. I was not.
We need an ambulance...or just more pressure... omg.. are you okay? Towels! Press this on. Does it hurt? Don't get up, don't move. I'll help you. Go slow! You're not fine. Let's get going, but slooowwwly.... stay down, go slow. But hurry up. Hold the towel. Don't touch it! Should I call 911? I'm calling. They would take longer than us going ourselves. Okay, let's go. You're right. We have to go- it's not good. Take a photo for me. Are you serious? click,click. There. See, it's bad. Come on. Please, it's now. Can I finish getting dressed?
I slide a chair over. Sit here. I will tape it. Get chair-dressed. Here's a shirt. I'll help. Tape my head. I add layers of paper towel and gauze. It's dripped all over his ear and shoulder already but I can't worry about that.
I do a horrible job of taping it to his head, paying no mind to the peachfuzz or coverage. It's haphazardly taped like a star with long weird legs of tape going every direction. I should have framed the gauze. Gak! I don't know! It's already pooled full of red liquid and I know my tape job will not suffice.
Can we go? Can you hold a towel on it? I will help you. Let me hold you up. Here, your shoes are ready. Go slow! Lean on me. We get into the car.
I breathe and try to calm myself. I know I am in a state of shock and panic and I need to get a grip. Can you drive? he asks, almost as if reading my mind. I exhale and nod, yes. I'll be okay now that we are going. Talk with me and stay awake. Hold that towel up, too. Are you okay? Yes, he says. And we drive.
We get to the ER (22 minutes later) and I help him in. I park the car and return to find him partially mummified with fresh gauze wrapped neatly around his head and under his chin while we wait our turn.
|Posted by firstname.lastname@example.org on July 4, 2020 at 9:50 PM||comments ()|
I offer a walk and Ben says yes. He's annoyed at feeling weak, he isn't happy about it. I remind him it takes time to build up strength. We walk to the end of the block and back around 2pm. I slow my pace to match his. I don't want to rush him. It's a gentle pace and I find it hard to resist speeding up.
We repeat this slow walk around 6pm and on our way home, we see Mrs. Mia in the street. "That's our cat!" and I cry out, 'Kitty,kitty,kitty. Mia-mee! Hi, bup-bup!'. Don't call the cat, he says, but in that same moment, she trots over to us. I'm delighted. She joins us on our return home.
Ben feels like an extended walk so we pass our house and continue. So does Mia. I am so excited about this, but I try to remain cool. My eyes are bursting out of my head and I give Ben a sideways look. He softly shakes his head (it's almost like an rolling his eyes, but Ben is too kind for that).
He can see that I am about to explode with joy, he knows my crazy love for everything Mia. We exchange a knowing look (the one that says LOOK, OUR CAT! and "Settle Down" at the same time.) I watch Mia's antics with as she prowls along the sidewalk with glee.
We turn the corner and walk another block. Mia trots in front of us. She leaves the sidewalk to sniff out a flower bed or chase a bug, but she continues by our sides. Oh, my heart! We return home, and she does too. Every stride, she is with us. Our little kitty-cat.
I hope this means we can take family walks like this forever! A cat on a walk. I love it.
|Posted by email@example.com on July 4, 2020 at 4:05 PM||comments ()|
Ben is catering to me. He wants me to rest. It's a funny balance... we both want the other one to rest.
But, what will it hurt him to cook me eggs? He makes brunch, coffee and serves me.
I'm in heaven. Having him home, seeing him up, returning to normalcy.
The eggs are the most perfect eggs I have ever had.
|Posted by firstname.lastname@example.org on July 3, 2020 at 11:00 PM||comments ()|
Ben diligently signs all my gardening awards and tells me: No video of this please. (I'm not surprised and I agree).
He reads all my silly details on the certificates and feigns suprise to see 'Kristina Fuller' as the recipient for them all. Good job, honey. He tells me. It's Ben, Mia and myself on our little deck. We light the wood stove and enjoy the yard together. It's perfect.
Dirt Coordination Achievement Award
Lattice Building Acheivement Award
Transplant Achievement Award
I tell him there were some contentious and cheeky comments about the Watering Award. Some of my fans and followers weren't sure I deserved it! Can you imagine? June has been exceptionally rainy and they wondered: Was there actually merit to award to me on this?
He grins and I laugh. I'm taking it, I say with a smile.
We talk about the garden plans. We tour the yard and return to the deck fire. It's just perfect for me.
|Posted by email@example.com on July 3, 2020 at 4:45 PM||comments ()|
I'm heading to the hospital at 9am and a friend has offered to come and clean my house. I am so touched and tell her the timing is perfect. I don't even know what I need, but she will. She's bringing her mom and her own cleaning supplies. It makes it a no-brainer for me and I'm grateful.
I arrive to the hospital and the great news is.. he's being discharged! He's eating, alert and surgery results look great.
Of course, the trip home is not straightforward, but I don't care. We stop at the pharmacy, community clinic and GP office for supplies and refills. We want to be 100% sure we are stocked for the weekend. We are due a good weekend!
We go for a bite to eat and stop by a garden centre for Ben. He has plans to get his hands in the dirt and he buys some soil testing kits and plant food.
We arrive home to a sparkling house - so many nooks and crannies I continue to discover. The microwave, the entire island, the cables tied by my bed for easy access. The coffee mugs inside! Oven! It's just beyond what I could have hoped for and I feel blessed.
I feel more than that.. it's so important for me to have a nice home-coming for Ben. The house is beautiful, the deck projects are mid-way, the yard looks good and I'm so satisfied with this day.
|Posted by firstname.lastname@example.org on July 3, 2020 at 12:30 AM||comments ()|
Ben eats like a wolverine. He samples everything. He's so happy to be eating. He's so excited that food tastes good and isn't hurting.
I eat beside him. I'm quiet.
You're too tired, he says. You're doing too much. Don't come here tomorrow. My eyes fill up with tears and I stammer, 'But I want to see you every day.'
He's extra affectionate with me tonight. He hugs me again and says, Soon, you will see me every day at home. I want to see you every day, too.