Why do I write these blogs? Firstly and foremost it’s because writing is my therapy and to be able to get everything out helps me. Secondly it is to keep everyone in the loop. If I have learnt anything over the years of walking a cancer road it is that people don’t understand, but most want to. Most people would love to ask the hard questions, and I welcome that because it makes people understand and learn.
When someone goes through a life defining diagnosis like a cancer diagnosis, everyone goes through it. Yes, the patient has to do the hard yards and face some big battles, but their family and friends also go along for the ride. Sitting on the sidelines is not an easy gig, trust me when I say that because I have also been in that position. However, I find if you share your journey (hate that word but couldn’t think of a better one) then others let their guard down a little and tend to deal with things easier. If I let my walls down and let people in and understand where I am at, then it not only helps them, but it greatly helps me too.
The port I had inserted into my chest stopped working. It had to be put in under sedation and wasn’t the most pleasant procedure, but in the long run it was going to make my life a hell of a lot easier. It is called a Hickman Port and it has two taps that come off it. I had a teacher in grade four and his name was Michael Hickey, so I called one tap Michael and the other one Michelle. Yesterday I had to have a scan on Michael and Michelle to see why they weren’t working, and we found that they had a U bend and a blockage. This morning one of my lovely doctors suggested one last ditch effort at putting some medication in and seeing if we could get rid of the blockage … and it worked! The idea of them taking it out, and yep … they just pull it out, was not exciting me, but if it needed to be done then I knew I could suck it up and do it. When they put the medication in, I had to lay still for 30 minutes and let the magic medication do it’s thing. What does one do when they have to lay still for half an hour?? Put your Airpods in and listen to John Farnham and Olivia Newton John’s song Dare to Dream of course! I was manifesting the shit out of this medication working … and it did!!! Let’s cross fingers and toes and everything else that we can and pray that Michael and Michelle keep working!
Yesterday I also needed to have another spinal tap done. This time they took me to radiology, and they did it guided, so they got it first go. So much nicer than the last spinal tap and I have also bounced back better. After they take the spinal fluid and test it for any Leukaemia that may be hanging out in there, they then administer chemo straight in there just to cover all bases. Then the caffeine loading begins! I had to stay flat on my back for 90 minutes and drink Coke again, although this time I got a straw. Not so much of a challenge but appreciated.
So whilst I am sharing, let’s keep things real for a minute. The things that happen along this journey are some that will curl your toes. Constipation is one of these things. I remember when I was first diagnosed in 2008 and receiving treatment for Breast Cancer that constipation was one of the side effects I suffered. I clearly forgot how badly it affected me because Tuesday is not a day I want to repeat.
Imagine this … you are feeling a little backed up and you ask for a little help in that area. I had already been having a little help for the days leading up to this event, however I felt like we needed to step up the efforts a little. Enter the awesome nurse Monique and her fix it remedy … a little shot of oil that tasted like straight sugar but looked like cooking oil. She smiled at me and said “by the time my shift is over, you’ll be right!” and she followed that up with a wink. It had turned into a little game.
Well, Monique knocked off for the night and Kate was still sitting around, waiting for some action. My stomach was churning, and it sounded like a big thunderstorm was going on in there … but nothing! By 10pm, I was pacing around my room like I was in labour, I actually felt like I was in labour. The pain was getting to the point of ridiculous and I needed more help. Enter … night nurse with a double! Two sachets of Movicol in a cup of water. She said give it an hour and if that doesn’t work, its enema time! I paced, I laid down in a ball, I stretched, I walked, I tried and then it was time. I was sitting on the toilet with another chair in front of me, bracing myself, ready for impact. Sweat pouring out of me, sounding like a wild animal and then the thunderstorm happened! The relief I can not explain, but the pain is something I do not want to repeat.
You stay in hospital; you take what you are told to take, and you do what you have to do. These doctors and nurses are nothing short of amazing. To have to be all over giving me the medications that are going to save my life, but at the same time think about the side effects these medications can have on the other parts of my body and then try and make me feel somewhat normal is incredible. What these nurses have to deal with is beyond words, they truly are walking angels!
This morning I was greeted by my morning nurse with the little cup of lollies as we call them, which was all my medication. This morning we smashed all records so far and hit 15 tablets! *Insert surprised face here* but whatever it takes I suppose. I started to down them with the nice fresh iced water that had just been delivered and I started to get an ice cream headache! First world problems … but do you see what I mean when I say doing one thing leads to another? I was then faced with a glass of Sustagen this afternoon. I have not drunk a milk product for years as it does not agree with me at all … so that was another complete mind F%$@! What are they doing to me?? What’s the worst that can happen? I won’t be constipated! It is such a rollercoaster!!!!
The girls have found a good place and are doing really well at home. I still miss them like crazy and wish I could come home just for one night, but I know I am very vulnerable at the moment and have to stay here. We facetime numerous times daily and check in, especially at night. All four of us are in three different places but we somehow still make it work and connect. We truly are the most blessed family at the moment with amazing chins ... I'm still winning that one! I feel like I now look like a chipmunck who is stashing her nuts in her cheeks and chin. Thank you massive doses of steroids.
Tomorrow will see me have round 2 of the big stuff and hopefully I can pull through it as well as I did last time. It wasn’t easy but it could have been a lot worse, so I need to keep my head in a positive place and keep believing that I can do this. I need to roll with the punches and come out the other side still swinging. I am loving your messages and the love that’s coming through, it really keeps me going and passes the time being able to reply to you and check in when I can. I appreciate all the comfort and support that is being thrown in the direction of our girls and especially Bob. You are all literally holding us together!
Sorry if it was a little bit of an over share today, but I’m keeping it real. I’m letting you into the world of a cancer diagnosis, the good, the bad and the ugly. Although this is a shit road that we have to travel again, I am truly grateful for the medical staff and everyone who is saving my life. Shit happens, and things happen for a reason. I will come out the other side of this stronger and wiser and ready to make an even bigger difference in the world.
Until the next instalment of Kate’s battle with ALL … Keep Dreaming Big!