Sorry I haven’t posted in a while. Every time I think I will write something, I end up procrastinating so it doesn’t get done!
I’ve been at home for a while now and it’s now been 9-10 weeks since I had my surgery in May. I go through periods where I am full of energy, then really tired but now I think I am on the road to recovery as I’ve started physio and will get my anemia under control so I won’t need blood transfusions (that was one of the main reasons why I’ve been so tired as we found out!). I have also finished my ultra low fat diet and a few weeks’ ago I savoured two cinnamon doughnuts with a coffee – it was heaven. I am also eating one now and I know it’s bad because I just had physio this morning!
Work put on the most amazing trivia night fundraiser for me last month and they managed to raise $14k over the course of a few hours. I could not believe what a loving and supportive bunch of people I work with that make me feel like family. I have to say that I am so lucky I work with the most genuine people who since day one have supported me and made me not feel so alone in this journey.
It was such a surprise as a bunch of the mums at school came to support me and together we had a really fun time. I really could not have asked for a better night out and I will never forget it. I will also never forget what the local Canberra community has done for me and my family – I will forever be grateful. I really hope one day we can afford to buy in this area so that Lindy can stay at the same school as the parents and teachers have been such a supportive community during this difficult time and both Lindy and I have made great friends with the school mums and kids!
I am still in the early stages of my project with Rare Cancers Australia but the head of industrial engineering at Konica Minolta offered to print my tumour and will be meeting with my surgeon soon to discuss the model. I am very excited as the project is taking shape albeit in its infancy. However, there is still a long way to go!
My husband and I travelled to Sydney as I am part of two clinical trials and once one opens up in Canberra I will join that along with starting immunotherapy.
I am looking at returning to work and life regaining some normalcy. In the meantime, I am studying at home and uni has been very accommodating with my situation. I am halfway and considering doing a PhD after, part time to work as a consultant in my current role at my employer – I love them so much I think I will be there until I retire haha!
It’s the last day of school holidays and over the last two weeks I’ve managed to take my daughter out to see Secret Life of Pets 2 (it was great!), The Lion King (bring some tissues) and go to the zoo.
She now has a cold so hopefully she will be OK by Monday. I slept in bed with her last night so my husband could have a good night’s sleep (as Lindy has been waking up multiple times during the night due to her blocked nose and general feeling of unwellness) and to be honest, I really wanted to give her some cuddles as she won’t be little forever and we never really know how much time we have up our sleeves. Life is fickle like that.
I remember going through a range of emotions before I had my surgery and when I was in hospital recovering, mainly thinking to myself, “I wish I had a more common cancer, I wish I had xyz” anything would have been a welcome escape than facing reality and to be honest it got me thinking about how sometimes in life we wish we were anywhere but here, but the truth is that maybe here is where we are supposed to be. And maybe wishing we had something else may end up being five times worse, maybe it would be better, we will never know. That is not our journey, our journey is right here, right now. I know I am exactly where I am meant to be.