Where to start? Firstly a little about me. I’m 34, and a newbie comedian on the Sydney stand up scene.
Things were going well in November/December 2013 with my career and I have the advantage of being employed full time in a stable and well-paying job with a large insurance company. I even got accepted into the RAW comedy competition.
My health, however, had been in not the best shape for a few months and I’ll admit I didn’t pay attention to it due to working full time and doing stand up comedy gigs/going to friends’ gigs every week. I didn’t eat well or get enough sleep.
I was constantly getting sick, had a cough that lingered for over 2 months and took on average about 2 hours to get out of bed every morning for work. I just assumed I was overdoing it, burning the candle at both ends as you do. It’s best not to assume.
My body gave me one hell of a time once a month for 3 consecutive months where the pain was so severe, coupled with extreme nausea, lack of appetite and migraines that I had to take time off work which I never had to do in the past. I naturally assumed I needed ultrasounds and smears etc so got all that checked out and it’s basically healthy but what about the pain?
I could work (barely) after that but dragged myself through the day and cut back on going to gigs, stopping performing quite as much thinking I just needed rest but I was very worried. I was very honest with friends and employers but I was scared.
Now it’s at this point I should mention the referral I requested for a hematologist at Royal Prince Alfred hospital in Sydney a couple of years ago. I had at the time a pre-existing medical condition which had not required treatment and frankly, I had gotten used to living with it given I didn’t have symptoms or so I thought and monitored with blood tests only but my GP did not understand the condition.
At this point I need to go backwards before I go forward.
So it’s 2005 back when I was living in Auckland, New Zealand and I hadn’t been to a doctor for a checkup in several years so I went in for a barrage of standard blood tests and they found an unusual protein and sent me immediately to a hematologist.
Turns out that I had a benign version of multiple myeloma called MGUS (also known as smoldering Myeloma; fitting for the Hot Comedian!) which at that point did not require treatment, just monitoring.
The problem with myeloma is you don’t always get symptoms until it’s gotten really bad so it was a tough time for me and my family especially given that it’s rarely diagnosed in someone in their 20’s and is a rare blood/bone marrow cancer in the first place.
I felt alone at times but I eventually got used to it.
So back to this year; after I moved to Australia in 2010, with my MGUS I had arranged blood tests only in 2011, 2012 and 2013 via my GP, however, he is not an expert in myeloma so he thought it was stable not progressed and I did not have a cause for concern.
Nevertheless, I got the referral in November 2013 and the specialist said there were concerns but he needs to send me off for a bone marrow biopsy to confirm if my paraprotein levels had risen due to progression.
He was very laid back so I tried not to worry too much.
If you ever have to get a bone marrow biopsy ask them to sedate you!
My experience in New Zealand was extremely painful so this time I insisted on being ‘’drugged’’ so it was ok!
I did not hear anything back for over 2 weeks from hematology and they say no news is good news.
Well see that was not the case here. I just assumed they would have contacted me if it was serious. Logical assumption right guys? Yeah, no they didn’t so being the studious patient I am and genuinely concerned about my health, I chased up my hematologist and he was wondering why he hadn’t seen me yet!
RPA missed something there!.
I missed a phone call and instead heard via email that the disease had progressed.
As you can imagine, living with something with virtually no symptoms for over 8 years then hearing this is very overwhelming.
Within a week I had my long overdue follow up appointment.
This time I brought a support person who asked all the right questions as I was in a lot of shock and trying not to cry during the appointment. This was on 10 December 2013.
Since then I’ve had 2 follow up consultations, a blood transfusion for low platelet anemia which helped as it was taking me over 2 hours to even get out of bed every day and completed my first full cycle of low dose chemotherapy and velcade (chemo injection).
This week is my drug-free week so it’s been a bit up and down. A few days I had nausea and felt so run down then the other few I’ve felt OK. Treatment starts again 3 February.
I’ve been off work since 10 December, had to cancel my spot for RAW, cut back on going out so much, and enlisted the help of as many of the services that the Cancer Council and Myeloma Foundation can offer such as peer support, talking to nurses on the phone, and my Mother came over on 8th January until 19th on carer’s leave.
I’ve really found that talking to people openly has made the diagnosis easier to deal with.
I’ve had to write a lot of lists of questions/to-do lists and ask for help and the original Christmas and NYE I envisioned was quite a bit different to what has occurred but I’m nothing if not adaptable and luckily due to advice from my flatmate and a great staff insurance plan my employers have approved my insurance claim so I will not be working again until at least 22 April.
This is very important as this disease affects my immune system and I cannot take risks with infections or overdoing it. The day job was very mentally stressful. Fortunately I have such lovely co-workers and an understanding company. I had not even been working there a year when this happened.
A lot of friends and family and workmates have offered help wherever they can whether it be coming to treatments or other appointments or offering health or financial support or advice.
Health is the #1 priority and I firmly believe that by having a positive attitude and trusting that the universe will provide that I will get through this.
In April after a total of 4 months of treatments, I’m looking at a stem cell transplant as a cure or at least to beat the cancer into submission for as long as possible. As I’m young this is a very viable option.
The reasons I’m blogging? Well I do keep a diary but that’s more when I need to vent, write about side effects as I may need to let my specialist/myeloma nurse know in case we need to change dosages or if I have an infection it can get complicated and I’d be in hospital so the diary is handy but blogging is new to me. I have time, I like to write and am very open.
I would like to share my journey with fans of The Hot Comedian and sometimes I’ll inject humour or maybe I’ll inspire you with my positive attitude? Who knows.
I do have a rare cancer though and I’m a bit of an odd comic.
Putting the word out there. I don’t think many people have heard about Multiple Myeloma especially not someone who was diagnosed with MGUS at 26 then full Multiple Myeloma at age 34 given this disease is generally diagnosed in those over 50.
I do think I can beat this. I believe traditional treatment combined with meditation, acupuncture and the power of positive thinking will really help, well it couldn’t hurt; I’m only referring to the natural stuff! I can’t speak for the chemo and it’s long-term side effects etc but I’m sure future blogs will be funnier. This one is more informative.
Thank you for reading.
Link below for more information on What Multiple Myeloma is.
The Everyday Spiritualist 