Sorry it’s been a little while since I touched base and let you all in on what’s going on and where I am at. The past week has been a bit of a blur. As you all know I have been in hospital at the Olivia Newton John Cancer and Wellness Centre since 5th July after I was diagnosed with Acute Leukaemia.
Last week they started talking about busting me out, this blew my mind! What did they mean by busting out?? Go home? I wish! Bob and the social workers did some research, and they found the Punthill Apartments Ivanhoe which is close by the hospital and this has become our home away from home.
Sunday afternoon Bob and I sat around in my hospital room waiting for the Pharmacist to come visit and go through all the medications I need. Four hours later, in she walked … with an esky and three huge brown bags full of stuff! What the hell?? We looked at each other in disbelief and then just laughed. I can not explain how complex this is to get your head around, but if it meant that we could get out into our own apartment, have our own space and try and have some sort of normality, then this is what we had to do.
Getting in the car was an effort! I was bloody exhausted by the time I got my arse in the car, but I broke down into tears as soon as I did. I was somewhat free … but I also felt like I was breaking the rules in a BIG way. To be told you are going to be in hospital for 4 to 6 weeks and then manage to break out after 17 days, it was a pretty surreal moment.
I need to go to the hospital every second day and have my bloods checked. Yesterday Bob dropped me at the door, and I made my way to the third floor where day oncology is. I found my way to where I was supposed to be and I said, “Kate Gale reporting for duty!” Might I add I was late! First day and I was late … oops! I was told to take a seat and my nurse would be with me shortly. So, I did exactly that, I sat, and I waited in a hallway with many other people. It wasn’t long before Ness my hematologist nurse called me in and took my blood. This is a pretty simple thing to do as I have a port in my chest that they literally hook in to and blood comes out and medication goes in. It’s actually a godsend as my veins are beyond shot. After my bloods were done, I can go and wait in the Wellness Centre, in another waiting room or in a small café area. I still need to wear an N95 mask and be careful not to mix with too many people at the risk of getting an infection. I am thinking hard about what I am touching, making sure my hands are in my pockets, so I don’t touch things, it really is an emotional rollercoaster.
Yesterday my bloods had dropped a little, so I needed to go in for a ‘top up’. Yesterday was an anti-fungal (I know that sounds gross) but we call it a ‘Pina Colada’. This is so I have extra back up on board just in case I do come in contact with germs. To have this treatment it is IV, so I needed to go into the Day Oncology Ward. Wowsers … this was confronting! It is nothing like chemo was in Ballarat. In Ballarat we were in a room with about 8 people, all in recliner chairs in a horseshoe shape where we could talk to one another. Not the same in Melbourne people!!! I walked into a huge room with about 30 chairs, that were all over the place. I was placed in chair number three which was looking out a big window and Ness told me that the big oak tree I was looking at was planted by Olivia Newton John from a little seedling. I sat there and watched the parrots jump in and out of the big strong branches and was imaging what she was thinking when she first planted it. I did get a little overwhelmed at times sitting there. The beeping of the machines, the talking that was going on around me. I did think a few times with tears streaming down my face, I can’t believe I’m doing this again!
But this is now my life. I will be having treatment for at least the next two years. Yes, things will slow down, and I will be able to return to ‘normal’ life after a while, but for the moment I need to be in Melbourne and hitting this bastard hard to begin with. So how am I feeling? Fridays are chemo days and I actually feel ok. The best way I can explain it, is I don’t fell like I am in my own body. The feeling you get after you have been to the dentist and you are numb, the part where you can partially feel your face but are still numb … that’s how I feel. My entire body feels numb, and I get exhausted easily. I can get up and have breakfast and a shower then I am cactus for a little while. It may mean, I need to sit down for a while, I may actually lie down and sleep for a bit. I just need to listen to my body and rest when it says and go when I can. The hair is still hanging in there and not looking like leaving just yet … we shall wait and see!
Bob has been amazing. He needs to inject me every night with a medication that is boosting up my bone marrow. You can see he hates doing it but doesn’t bat an eye lid and just gets on with it. This needle then gives me muscle and bone pain for a little while. It’s a strange feeling as I know it’s doing its job because I can feel it, but at the same time is the only pain I get throughout the day. We sit here of a morning and in the evening counting out the pills and following the list of medications I need to take. It’s crazy to see how much I am putting into my body, but when we look at the list and dates and see that there is an end to it, it makes it all better.
I have become a little closet eater. I find if I keep eating small amounts often, I can stay on top of the nausea. I do have medication for this but am trying to have days where I don’t take it if I don’t need to. It’s not uncommon to find me chowing down on some Pringles at 2am in the morning. I am also partial to some bikkies and cheese and anything that has a little stronger taste as my taste buds are starting to go. Dry Ginger is also a treat!
Last night we sat down and watched the John Farnham doco together. You could see Bob was thinking “shit, do I really need to do this?” but he sat with me on the couch, and we cuddled and held hands. It was so nice to share something I really love with him, and just have some “us” time. I laughed, I sang, and I cried but it meant the world to me to be in our little home away from home, watching and listening to my hero and enjoying time alone. Can we just take a moment and recognize what a legend John Farnham is? To hear he is cancer free yesterday was excellent news and just what I needed to put one foot in front of the other and keep going! What a legend. We did a cheers for him … how times have changed for me, I hit the cheers hard with a water!
I start a new chemo on Friday in conjunction with what I am already having. This is the big Leukaemia busting chemo and can play with my liver. Because of this I need to be started on a lower dose and be closely monitored. If my body reacts well then, they will turn up the dosage and hit it. I however need to take some body building supplements to help me with this chemo and as of Thursday I need to start taking these supplements on a huge level. Me, being a person that thinks twice abut taking Panadol, this is a complete mind F*%&! I need to take 16 extra supplements over the day on top of everything else. I’m going to start to rattle!!
As much as I love being out of the hospital, it still plays on my mind what it takes to do this. We couldn’t afford to do this if it wasn’t for all the generosity from the Go Fund Me Page. Yes, the Leaukamia Foundation is amazing and subsidizing us, however we do still need to pay out of pockets, medications, food and travel for Bob to go back and forth to see the girls. I try and put all that in the back of my mind, but I just wanted everyone to know that this isn’t free, and it is another bullshit detail that we have to deal with. We are so grateful for everyone who is helping and has helped. It really does mean the world to us.
We can’t wait to come home and thank every each and one of you personally. I am going to hug every one of you and make it as uncomfortable as possible, but that’s going to be my way to say thanks. Thank you will never be enough, but for now that’s all we have.
So, until the next installment of Kate and her ALL battle, keep smiling, and always Dream Big!
Kate xx