Sorry it’s been so long between updates, but I was thrown the curve balls of all curve balls 4 weeks ago and have had a bit to get my head around.
I was cruising along having chemo treatment in Melbourne three times a week. We were still staying in the apartment in Melbourne, and I was having to be at the hospital every second day for bloods and top ups as required. We were in a routine and things were travelling along fine and dandy. Until …. One Sunday morning I woke up and the world was all upside down and I felt like I was floating. The only way I can describe it was it was like someone had plucked me off the Earth and put me back and everything was left-handed and backwards. I couldn’t put my clothes on, I couldn’t even sit on a chair without Bob guiding me. I was scared! I knew something was wrong and said told Bob, we need to go the hospital. So off to the ED we went.
I could do nothing but lay on the bed and close my eyes, hoping I would fall asleep and when I woke up everything would be reset and back to normal, but that wasn’t meant to be. After a barrage of tests and some support from both Bob and my sister Ali I was told I had a bleed on my brain. Yep 42 years old and I had a stroke! A stroke!!!! WTF!!!!
I laid on that bed staring into no man’s land with tears streaming down my face. Ali was wiping them away and calming me down and telling me it’s ok. I was in disbelief. What else can be thrown at me? Seriously, like I don’t have enough to deal with!
After hours laying in that ED listening to the craziness going on around me, I was eventually transferred to the stroke ward at around 5pm. Now this is where the fun started. I was put in a room that is normally used for nurses to monitor epileptic patients. It was small and barely fit my bed in it, there was a camera watching my every move! This room also came with my own nurse. Now this nurse had clearly been nursing for many years and had to assert her dominance on everyone she came in contact with including me. She was dressed in bright pink scrubs and even had the hat to match. (dork) Sadly she had also has lost her empathy somewhere along the way. We shall refer to her as Matron Asshole.
Bob and Ali went home, and I laid there trying my hardest to go to sleep, but it wasn't happening. I couldn't turn my thoughts off. There was a clock in front of me and all I could do was watch the second hand go round and round and round. Add to this I was strapped to these things in the bed that wrapped my legs and gently squeezed them at different intervals, so I didn’t get dvt’s, I was far from comfortable, and I felt like I was in jail!! The door was closed, it was hot, and I felt like I couldn’t breathe!
Matron Asshole came in and asked me if I had a headache. I did but I wasn’t telling her that. I hadn’t eaten or drunk anything all day and I knew that’s all I needed. She snidely said to me “Well, you’re lucky because most people with bleeds like yours have debilitating headaches.” If I could have jumped up and punched her in the throat right, there and then I would have. Not helpful information Matron Asshole!!!!
I was so hungry I could’ve eaten the crutch out of a low flying duck, but I was too scared to ask her anything in fear of her making things worse than they were, but I decided to take the chance and ask if I could go to the toilet and 2. if I Could I eat? She said, “Of course you can!” then scurried off to find some food. I was then presented with a packet of standard hospital sandwiches and was told how lucky (please note once again I’m lucky!) I was as they were the last ones. I knew they would be ladened with tomato (I hate tomato) and at least one tuna sambo, but I was that hungry I was about to lick the carpet just for a crumb and was willing to eat tuna at that point! Luckily for me there was no tuna, there was however tomato. I put the packet of sandwiches on my chest and began to start picking out the chunks of tomato, and in the process got a little shredded carrot amongst my blankets too … but hey … I had food and water!
Now … whilst Matron Asshole was off getting my lucky sandwiches, she unhooked me from the leg contraptions so I could go to the toilet. Off I hopped (I wasn’t really hopping) to the loo and did my thing. Please keep in mind I’m still feeling a little back to front at this stage, and I was having trouble with my left hand not computing with my brain. I finished my business, pulled my pants up and flushed the toilet. I made my way to the basin to wash my hands and then I saw it! I briefly looked in the mirror and to my astonishment I had managed to tuck the toilet paper into my Pj pants! I looked back at the toilet and sure enough … The toilet roll had come with me to the basin, and I had managed to unroll half the roll!!!! Then I looked in the mirror and said out loud to myself “well that’s embarrassing!!” I pulled out the paper as quick as I could and disposed of any unrolled bog roll, so Matron Asshole didn’t get wind of my toilet antics. I didn’t want to give her any ammo to tell me how bad my condition was.
12pm rolls around and I hear a knock at my door. In walks a woman who put the light on and introduces herself as Bridget and she is a junior doctor. Then she proceeds to tell me they have gone over my scans, and I don’t just have a bleed on my brain but also a clot. She advised to start blood thinners immediately!
The neurosurgeon I had already spoken to during the day had said the total opposite, so I was asking questions and a million of them! Bridget was talking about speaking to her boss and then she stopped in her tracks, looked at me like I had two heads and then informed me I had a piece of tomato lying next to me! My response was “What you don’t sleep with tomato?? Again, I got a look of horror. Clearly, she didn't like my humour?!
I refused the treatment and said they need to talk to the neurosurgeon and my medical team and come up with a plan. Matron Asshole was not happy. as She said a million times over, “I’ve been doing this for years and this is protocol”, but I wasn't having it. She may have scared me into not asking things initially, but I wasn’t playing any games when it came to my treatment. I wasn’t doing anything until I had all the facts.
I was riled up! It was midnight, it had been a big day, and I was done. My heart rate went through the roof, and they called a MET call on me. This means people come running from everywhere!!! My little jail cell was filled to the brim. Then the question of all questions came out of Bridget’s mouth “Are you anxious??!!!! Clot on brain, bleed-on the brain, MET call and you took away the tomato … yes, I’m feeling a touch anxious Bridget! Two more MET calls were made that night, my heart rate wouldn't settle, I was scared. What the hell was happening? I didn’t get a wink of sleep and I was counting down the seconds until it was daylight. That night is not an experience I want to ever repeat.
Now, I need to explain how this all came about and why it’s taken a toll. One of the chemo drugs I had which is the leukaemia ass kicking chemo did a number on me. My body reacted to it, and it caused me to get clots in my lungs and my little mate that made it to my brain that caused the stroke. I can no longer have this chemo. It’s taken its toll physically and mentally as this means I fell behind on my treatment and they also had to alter my treatment plan. I am lucky as there are other options, it’s just been a lot to get my head around. I want the best treatment because I need to beat this and to hear that I can no longer have the ass busting leukaemia chemo was a big blow, but I need to think positive and keep reminding myself I still have options, I'm just taking a different route.
The stroke symptoms were a lot to deal with also. My left hand had a mind of its own. I didn’t lose strength; it was just a delay between hand and brain. I also had altered sensation down my left side, and I sometimes didn't see things on my left side until I run into them. I couldn’t put my clothes on properly as everything was back to front (yep put my undies on backwards!) and I couldn’t even use a knife and fork which was really frustrating!!! Sadly, I can’t type like I used to, and this is why it’s taken so long for a blog. I haven’t been able to stare at a screen, and one finger typing takes a while. Many of you have messaged and I haven’t messaged back, it’s not that I didn’t want to, but I couldn’t make head nor tail of my phone. I thought my phone was broken! I physically couldn’t use it.
These symptoms have subsided, some are gone, and some are still there, but I need rehab for the ones that remain. This is something else that I needed to get my head around, 42 years old and going to stroke rehab! However,.... you all know I'm one stubborn woman and if going to hang out at the rehab centre once a week is going to get me back to the old me then that is what I will do!
I also made the decision to shave my head again. It really got to me this time around. I had allowed myself to think it wouldn’t fall out, but I was wrong. It was falling out in handfuls at a time. I knew I needed to take back the power and made the decision to shave it. It broke my heart, but it needed to be done. So, I’m now sporting what I’m calling the “bowling ball look.” My face is so round, all we need to do is pop three holes on there for finger holes and we will be good to go!
It’s been a lot to deal with all at once. I promised you in the beginning I was going to keep things real and let you all in warts and all, and I am keeping my promise so here goes.
I’ve been struggling. Physically my body is copping it, but mentally I’ve been falling apart. The anxiety at times has been crippling, and the unknown is awful. As positive as I try to be, I have felt like every step I take forward I’ve been getting bashed down with a cricket bat time and time again, the curve balls just keep on coming.
I’m in a place now where I feel like I’m moving forward so I’m going with it, but it’s hard. So, if you message and I don’t respond please don’t think I’m ignoring you, it’s just shitty timing, or I may not have it in me to write back. I love receiving your messages, pics, funny and naughty memes and support. It really does fill me with so much love and keeps me going.
I’m still fighting and I’m not giving up, I’m just carrying the anxiety backpack with me at the moment and fighting two battles at once! Some of the things that have happened have really traumatised me and at times I’m extremely scared. But I’m speaking up and saying sometimes I’m not ok, and that’s ok … I just need to believe that too. This treatment is full on and changes from week to week. I am trying to find the silver lining in every situation and making the most of my good days, especially when I'm at home with Bob and the girls, but it's hard.
I'm not giving in, I'm continuing to fight, I'm just dropping my walls this time around and letting you see the real me, and asking you all to keep having my back, keep praying, keep making me smile and know that I appreciate each and every one of you.
Till the next instalment
Keep Dreaming Big
On a side note: Can I publicly acknowledge how awesome my husband and sister Ali are. They have been by my side in Melbourne every step of the way. To wipe my tears, to talk me down, to smuggling in cheese burgers, you have been my pillars of strength, and back home my girls Breezer, GG and Tab ... Thank you xx