Grief & Consequences

Five days after mum passed, I ended up facing a serious health issue of my own. 

She passed on the Sunday. The following Friday, I went over to her place. I wasn’t going to start packing yet. But I wanted to do things like look through photos, and even just be there to feel close to her.

It was my first time going over there. And I couldn’t deal with the emotions. I didn't want to feel. I felt lost, and so alone. I didn’t know what to do. I didn’t know where to sit. So, in the early evening, I just lay down on the floor in front of the heater. I took too many of my meds. It’s something I used to do a lot, but not for the last few years, and it was minimal compared to what I used to do. I curled up in front of the heater, on the floor, and wept until I passed out.

When I woke up in the middle of the night, I couldn’t move my arm. It was kinda like when you sleep on it, but worse. More intense, completely unable to move, unable to feel. Then, trying to stand up to get to the glass of water on the coffee table next to me, I fell over. I couldn’t feel or move my leg either.

I managed to drag myself to the couch, with my arm and leg being dead weight, and waited about half an hour, thinking my limbs would ‘wake up’. I used my left hand to Google my symptoms (as we all do), but it only worried me more. Not wanting to be a nuisance to the emergency services, I called 'Nurse on Call' for advice, who quickly put me through to the ambulance.

They thought I’d had a stroke.

All I wanted to do was call my mum.

I didn’t realize it’d been about 30 hours that I was passed out - I thought it was more like 6. I lost an entire day, passed out on the floor.

It took days for them to figure out what was going on. At one point, I was scared I was going to lose a limb - maybe two.

Was it a stroke? 

Autoimmune disease? 

Compartment syndrome? 

Complications from an ingrown hair in my armpit? (not even joking) 

I still don’t quite understand it all. To put it simply, in the way I understand it, I slept on my arm and leg for too long. The blood supply was cut off for long enough for the muscles to literally start to die. When that happens, toxic byproducts are released into the blood. It’s called rhabdomyolysis. My arm swelled to twice it’s usual size (which has thankfully gone down). Thanks to dysmoprhia, I couldn’t even see it until a doctor pointed it out before a scan. Even then, I couldn’t see it unless I put my arms next to each other to see the difference. The swelling put pressure on my nerves, and now I’m left with nerve damage. 

I spent three weeks in the hospital. They wanted to keep me longer to do physical rehabilitation, but I needed to go home. I had spent two weeks there staying with mum during her final days, then 5 days at home, then 3 weeks in as a patient. I went to my mum's funeral in a wheelchair. I felt like I couldn’t grieve, being in the same place she passed away. I missed my cats.

I’ve been home for 5 months. I went from wheelchair, to gutter frame, to walking frame, to crutches. I just graduated to a walking stick last week, although I’m still very wobbly on it. My leg still collapses occasionally, and my thigh is still numb, but no where near as badly as it was. My arm is doing better. I have most of my movement and feeling back. It still gets sore and tired if I use it too much, even basic things like typing or cleaning, but I’m off the hardcore painkillers (oxycodone) regularly. I’m on lyrica to help with the nerve pain. If I miss a dose or two, I really feel it the next day, so I guess that means it’s working. 

I see my physio every week. Every session leaves me feeling weak and shaky. It’s sad how far things have deteriorated so quickly. I’ve been recommended to go twice a week, but mentally, it’s just too much. 

They just did another MRI on my shoulder, and thankfully there's no tumor there. I didn't know that was even a possibility until the neurologist gave me the results last week. I've had so many MRIs, CTs, ultrasounds, and various tests in the past 6 months, I've just stopped asking why. I've got another nerve conduction study coming up in the next few months, so hopefully I'll get an updated prognosis then. 

I’m sorry it’s taken me so long to share this. When I last posted, I had already been dealing with this for a couple of months. In the early days, they didn’t know if I’d regain function in my leg, or especially in my arm, or if the pain would ever go away. After being so depressing this year, I think I wanted to wait until I had some good news about this.

On Monday, it will be 6 months since mum passed. It’s still hard to believe she’s really gone, let alone that it's been so long. I still keep thinking I can just pick up the phone and call her. 

The day after mum passed, I went back to the hospital, just to sit out the front. Because the funeral home hadn’t picked her up yet, and it was the closest I could get to her. I took wine in a travel mug, and sat out the front for hours, because I knew she was there. I did ask the concierge at the entrance (who I got to know very well in those last few weeks, and I still am very friendly with when I go in for appointments), and she said I could go there any time I wanted to. 

I've been spending a few days a week at her unit. Packing and organizing. It's slow going because of my injuries, but I'm nearly there. It's going to be extremely sad once I can no longer go there. Even on days when I have no energy to pack, sometimes I just go over and sit and remember. Losing that will be like losing another part of her. 

I’m not coping with her loss. Some of you will know that my mum and I didn’t get along for a long time. But in the last few years, since moving out separately, we worked hard to repair that. And once we found out she was sick, I spent every day trying to help her. She told me that she was worried about me, that I was spending so much time and energy trying to support her, and that she was worried about how I would cope once she was gone. 

But she was right. I feel so empty without taking care of her. It became my reason to live for the time she was sick. Every moment, I was trying to think of what I could do to support her. I can try to fill the void with spending time at her unit, packing and organizing things. But what will I do in a couple of months when that’s no longer there? 

I still go over once or twice a week, because I have to get it organized. But I only take my night dose of meds with me. I thought it was an issue I was past - I hadn’t misused them to knock myself out in nearly two years. But I was wrong. And I’m terrified it’ll happen again.

When I was in hospital, I couldn’t help but laugh. Only a couple of weeks earlier, I’d poked fun at my mum for using a walking frame at the age of 64 (because I told the nurses that I thought she needed help with walking). Then I was using one, at the grand old age of 28. And when I was stuck in the wheelchair, I had no one to push me. 

I went to mum’s funeral in a wheelchair, with my support worker, with day leave from the hospital. As per her requests, it was a very small, private, graveside service. We had my dad’s headstone re-done to reflect them both equally. A few weeks after we found out she was dying, we had gone to my dad’s grave, to mark 25 years since he passed. We spoke about what she wanted it to look like, what she wanted on it, and I noted it all down. When we left, she patted the ground and said “I’ll see you soon, Bob” 

There was just 15 of us in total. My brother, my support worker and I, my 90-y.o great aunt and her son, four of her closest friends… she also wanted an open invitation to our medical center, so both of our GPs, my dietitian (who used to see mum), and 3 of the receptionists came. It was small and simple, but beautiful.

The words that stick with me were towards the end of the service. 

“In sorrow, but without fear, with dignity, and great respect...” 

Mum might have been without fear, but I'm still scared shitless. 

Christmas will be here in 6 hours, but let's just ignore it this year. It feels uncomfortable, not going over to see mum. Not making my roast chook. I've got a leg of lamb, which mum and I used to cook a lot throughout the year, to throw in the slow cooker. Simple. But I don't know if I'll even do that. 

We never did much for Christmas. Just spent the day together, cook a roast. My brother would visit. It was never anything big or overly special. But this year, I feel like I’ve been falling apart a little more each day. I turn the TV off whenever there’s a reference to Christmas. I hate hearing about it. I try to ignore it. But tomorrow is going to suck, to say the least. 

I'm truly dreading tomorrow. My first ever Christmas alone. I'm scared that it’ll be the hardest day so far, even harder than that first time going back to mum's place. That left me with nerve damage that I'm still trying to recover from after 5 months, and could potentially be permenant. I'm scared of what tomorrow will bring. 

My piercers offered for me to join their family Christmas at their farm. Which was absolutely lovely of them. But the last thing I want is to be around a happy family, and rub salt into the wound that I will never have that again. I thought about taking myself out to a nice restaurant for lunch. But same problem. Too many happy families. I’d probably ruin the day for anyone I was around. 

I thought about setting up at the cemetery for the day. But there’s going to be so many people there. I’m going to go on Monday. I’ve been on the 27th of every month. This is going to be the six month mark.

I've been trying really hard to start getting back to my daily routine, but even now, a few days shy of 6 months since mum passed and 5 months since I've been home from hospital, it still feels near impossible. 

In the couple of months after mum passed, my weight dropped by a little over 10%. It's stabilized since I've been drinking more again, but I'm comfortably 'officially' underweight again (forever fat though).

Thank you to everyone who reached out, both here and on Facebook as well as privately. I'm not okay. I don't know if I'll ever be okay again. 

I'm having a difficult time finding words, hence this post has taken so long for me to write. It's still early days, both in grief and in my injury.

To make things harder, my psychologist (who I've been seeing for many years) is on leave until March. She's been away for 3 months already. It took her a long time to tell me that she was expecting, because she was worried about leaving me. But when she did, I was nothing but happy for her, as much as we were both scared about me facing the holidays alone. She emailed me last night with a photo of her beautiful baby boy. I've been seeing someone new, I've only met them a few times, but they seem nice.

For now, I think I'm going to go have a cry and make a Black Russian. 

I just want to call my mum. 

Merry Christmas. 

Sitting on the porch, watching all the trick-or-treaters on (a socially distanced) Halloween. My first genuine smile in months. 

Day 3. The swelling hadn't even hit it's max yet.

Left – my thigh. Right – my forearm. 

Princess Persephone on her Halloween castle (a gift from my lovely support worker)

xxBella

19 Weeks, 2 Days...

It is with a very heavy heart, and immense sadness, that I make this post to let you all know that my beautiful mum has passed away, after an 19 week battle with cancer, which was unfortunately found too late to be curable.

But we’re all grateful for that extra bit of time that treatment could buy her to slow things down, and for the medical team who made it happen. Things moved very quickly from the start. She fought hard through chemotherapy, radiotherapy, and immunotherapy - even knowing that it would at some point take her life.

Through everything, she was brave, strong, and never afraid. She didn't know what – if anything - awaited on the other side, but she found peace knowing that she'd be with my dad again after 25 years. She was selfless until the end, worried about her family and how we would cope, even in her final days in the hospital, when her lucid moments were few and far between.


In her last two weeks, she was supposed to just go in for a quick appointment for immunotherapy. Her oncologist said she couldn’t do it, that her blood results needed to be followed by an inpatient admission. Less than 48 hours later, we found out that she wouldn’t be going back home.

I stayed at her hospital bedside for her last ten days, holding her hand, as each day she slipped further away. It was the most precious time, and something I'll never forget. Visitors at the hospital were only allowed at this point for end of life. I’m eternally grateful that they were more than happy for me to stay there, and set up a folding bed for me so I didn’t have to leave.

As much as we knew it was coming, even her oncologist thought she’d have another week or two before things started to fail. Her oncologist left on the Friday, saying he’d see her on Monday. Sunday, at 1:50pm, she was gone.


She’d been mostly sedated for the last few days. But no one was expecting her to pass so suddenly. I’d been sitting by her bed, holding her hand, for days. One minute, she was there. The next, she wasn’t. I’ll never forget the way her face changed, as she stopped breathing and her eyes opened. I yelled for the nurses that something was wrong with mum. I held her hand, squeezing, shaking, telling her I loved her. The nurses came in and stood there. I wanted them to tell me that my worst fears weren’t coming true, not yet. Everyone thought she’d have more time.

It was nearly three hours before I let go of her hand, shaking, screaming, hysterically babbling to please wake up, please don’t leave me.


For the last few days, she was sedated to the point that the only way to describe it is living death. It was terrifying, but ultimately the best thing for her. As they adjusted the dosages, she would have lucid moments where she woke up, extremely confused. All I could do was tell her it was okay, that her doctor had given her some medication because they wanted her to get some rest, trying to comfort her until she went back to sleep.

The day before she passed, she woke up suddenly, looked at me, and asked 

“Am I dying?”

Since the start, knowing it’d most likely spread to her brain, mum always said that she wanted her body to go before her brain. She didn’t want to go through what she saw my dad go through.

They don’t know exactly why her mind started to slip in that last week. The tumor had shrunk. It’s possible that it was a side effect from radiation. Her memory, both long and short term, slipped so far in such a short time. Within minutes, she’d forget what we’d been talking about, and sometimes even that I was there. It was distressing for everyone, especially mum, which is when they decided on sedation.


Mum would express that she was worried about me putting so much time and energy into trying to support her, both in those few months after we found out she was sick, but especially as I spent her final ten days staying in hospital with her. It consumed everything. I would tell her “helping you is helping me”. I was either trying to think of ways to support her, or visiting her to cook and make sure she had easy meals to reheat, or even just spending time with her, with no words needed. Watching movies she wanted to see.

The only thing I could say to her towards the end, sarcastically, was “Yes, I’m sure I’m going to look back and think ‘damn, I wish I hadn’t spent so much time with mum’”. There was never going to be enough time. No matter how much time I spent with her over those 19 weeks, I knew it’d never be enough, whether she had two months or two years left.

I take solace in the fact that we didn't leave anything unsaid. We had a lot of difficult, but necessary, deep & meaningful conversations, even in her last week. She had things to say that lifted weight off her chest, and I had many too. It wasn't easy, and there were many tears, but it gave me a lot of peace and closure, and I hope it did the same for her too.


But I can't help but have regrets. She’d told me days before her admission that she had pain, very similar to when she was first diagnosed. Her liver. I couldn’t see the jaundice, even after her doctor said it. I can’t help but wonder - should I have pushed her to go to emergency, as I was worried about her liver? If they caught it those few days earlier, would it have changed anything? Would they have been able to catch it and reverse it?


In the end, she was never scared. I can only hope to one day be as brave as her. She didn’t know what, if anything, was on the other side. But she knew that she would be reunited with my dad, who passed 25 years before, and that gave her peace.


On June 27th, at 1:50pm, the world became a bit less brighter


None of it feels real. After this horrible disease taking over our lives since February 12th, tightening its grip with each week that passed, everything feels so empty. For those 19 weeks and 2 days, almost to the minute since we found out, nothing else mattered. Since mum passed, everything feels so crushingly empty. I rewatch the funeral stream over and over. I listen to the songs on repeat - the songs she'd told us at the start of all this that she wanted. “Imagine” by John Lennon at the start. Then “Love Me Tender” by Elvis as they lowered her casket to join my dad.


Rest In Peace, mum. I know you’re back with my dad, the one and only love of your life, after 25 years, and how much comfort it gave you to know that you’d be with him again.

The beautiful morning fog, sitting outside the hospital with our morning coffees

The big haircut during chemo

Not the most flattering photos, but some of the most important. 

Precious moments, spending the last 10 days staying at the hospital with mum

Our last fish & chips at the beach, 6 weeks post-diagnosis

xxBella

I'm Not Ready For This

The past few months have been exhausting. Emotionally, mentally, physically.

On February 12th, we found out that my mum has cancer. Stage Four. Lungs, liver, brain... it's not looking good. Scratch that. We know it's not good.

I'll try to keep this short as to not bore you all, but it has quickly taken over so much of my life, it'd be impossible to not share here. I've never really had friends in real life, and I don't have many people to talk to.

In one week, everything can change. Within days, things changed from "my abdomen hurts a bit" to "you need to start treatment now, or you'll be dead in two weeks". There were no warning signs. It started in her lungs, but there's still no symptoms. It was only when her liver had swollen to over twice it's normal size, and was already completely overrun by the cancer, that anything appeared to be wrong. Even her GP of 30 years is quite shocked and distressed by it all.

She went through five rounds of chemo in 12 weeks, faster than her oncologist has ever seen. It's helped. But it's worn her down. She's not the same person she was just a few short months ago. Now, they're about to start radiation on her brain (we only found out that it'd spread to her brain two weeks ago). 

It's scary. My dad passed from brain cancer, 25 years ago, and although I'm sure there's been great advances in medicine in that time, my mum watched him slip away and the awful side effects from his cancer and the radiation treatments. Three grandparents and both of my parents will have passed from cancer (assuming my mum doesn't get hit by a car any time soon).

From day one, mum has said that she didn't care where it goes, as long as it's not her brain. Unfortunately, Small Cell Lung Carcinoma tends to spread quickly to the liver and the brain. One month ago today, on her birthday, she cried with happiness when her scans showed it hadn't spread to the brain yet. Two weeks ago, it had.

No matter what treatment they do, the cancer isn't going to shrink much. And we knew from the start that it was never going to get better. All they can do is try to slow it down, and buy her some more time.

Cancer is a bitch.

There's been a lot of hard discussions. Talking about quality of life. What she wants on her headstone. The song at her funeral ('Imagine' by John Lennon). Things she wants when it comes to her final days.

I've been trying to keep it together, for mum's sake. My brother lives an hour away, so I've been trying to do what I can to help out. Whether it's looking in to things she wants to do, movies she wants to see, picking up groceries (read: my support worker picking up groceries while I sit in the car), prepping meals for her, doing a load of dishes or laundry, or just being there to talk, or not talk. Things like shaving her head when her hair started falling out. I go to appointments with her and take notes, because there's so much information coming, she can't remember all the details.

My focus is just on spending time with her, and helping where I can, but it's hard seeing her not being able to do things that were easy a few months ago.

There's just a lot to deal with, and I'm not prepared for this (as selfish as that sounds). It's hard putting on a strong face for mum, and then just falling apart when I get home. I'm filled with depression, fear, anxiety, sometimes even anger. I feel sick when I think about it. Taking care of myself is the next hurdle. Everything has been so intense, and it's moved so quickly. I know there's usually a point in life where the care-giving dynamic changes, and the children start caring for their parents, but it's too soon. I'm only 28. Mum just turned 64. I thought there'd be another twenty years. Nothing about this is fair.

I've spoken a lot to my support worker, even out of hours. She says I'm a friend first and a client second. If I message her at 10pm after a difficult day, she'll always call to check in. I've had many calls to Lifeline, one of which ended with them not believing I could keep myself safe, and sending 'someone' out to check on me. Little did I know, this ended up being the police, who agreed with their assessment, and then paramedics to transport me to hospital. I’ve stopped calling since then.

I'm trying to get my shit together. I'm trying to link in with a counselling service that specializes in terminal illness and grief ('pre-grief', as I've been calling it), but due to my complex mental health issues, they aren't keen on taking me on. My team are still pushing for it though. I'm also looking into finding an outpatient alcohol program, but resources seem scarce.

I know that my mum and I haven't had the greatest relationship at times, which I've talked about here before, but over the last two years, we've gotten a lot closer and mended the wounds. I talk to her every day, and visit her every Saturday (now twice a week). And I'm scared. The only other family I really have is my brother, and we haven't been particularly close. And I worry that, after my mum is gone, the only people in my day-to-day life are going to be those who are paid to be there (support worker ((I only have one these days, and she's become my best friend)), psychologist, doctor, dietitian, etc.). And as much as they mean a lot to me, that seems like a very empty existence.

I'll try not to let this topic overtake my posts, and as always, I want to get back to posting more. I was going to make this post after round two of chemo, round four, round five, hoping that things would quieten down. But with radiation set to start this week, I've realized it's not going to quieten down. It'll just move from one chapter to the next.

I know it's going to be a rough time ahead. While mum is still here, I have to keep going. What scares me if what will happen to me after she's gone.

Birthday Dinner at the local steakhouse

Mum was worried about being turned away for having no hair, and wanted to take a hat with her. She's done amazingly at not feeling like she has to cover up to make others comfortable (she really didn't want to), although it took a lot of convincing. 

She didn't take a hat, and there were no issues. 

When the waitress saw me taking photos of my mum and brother (I'm taking a lot more photos these days), she asked if we wanted a photo of all three of us.

Wagyu eye fillet. When it's potentially our last family dinner out, why cut corners?

(It was amazing, btw, and I had leftovers to bring home)

xxBella

Meanwhile...

My world was turned upside down a few weeks into the new year, in a way I’ve never experienced before.

Things have been a bit crazy these past few months. I’m trying to put a post together, when I’ve got the time and energy, but I’ve been struggling to even keep up with journaling.

I know this isn’t a proper post, but I just wanted you all to know that I’m still around. I’m okay. Things are hard right now, but I have to just keep on going, day by day.

Sorry for going 'ghost' again. I know I’ve said that I’d get back to posting at least monthly this year, but the last few months have changed so much in my life.

I don’t mean to vague-post, but there’s so many thoughts to compile before I can do a proper update, and I’m having trouble coming to terms with, and being able to articulate, everything that's going on. I am working on a proper post, I promise. But I’ve been stressing a lot that I haven’t been able to post an update, so I also wanted to post this in hopes of alleviating some of the (self-imposed) pressure and guilt.

If I haven’t posted in the next month, please definitely do send harassing emails until I get off my ass and actually do it (looking at you, Shelby!)

Again, I’m sorry for the vagueness. I just wanted to post something to let you all know that I’m working on it, and will hopefully resume our regular programming soon.

Love you guys. Thanks for putting up with me. I'd be so very lost without the community and friends I've found here over the past 9 years <3

In the meantime, random recent pictures...

My new, very appropriate, slippers

Sitting on the floor, next to a case of diet Mountain Dew, 

blowing my cigarette smoke through the screen door, 

because why not

Hey look I’m alive and fat

The fluffy babies who keep me alive

xxBella