On 25th February 2015, my life changed forever when I was diagnosed with Multiple Myeloma at 49 years old. A month prior I noticed when on holiday that I just wasn’t feeling myself, nothing serious but enough to say to my wife that I felt out of sorts. The following week I started to notice that my energy levels were not the same, and I slowly started to deteriorate in strength, energy and motivation. I had no idea at the time what was going on, but also noticed that one of my ribs was quite painful (a classic myeloma sign). I also started noticing bruises starting to appear over my torso for no reason at all, and I am generally the sort of person you have to hit pretty hard in order to bruise (another sign). Over the next couple of weeks I started to lose my appetite and weight just started to fall off me (7 kilos in 1 week). My doctors started sending me for tests on my rib (xray, bone scan and CT scan) of which these identified a fractured rib to lytic lesions on my spine.
I still tried to work during this period however it was becoming more and more difficult as my energy levels waned and my overall body strength and weight just disappeared. I thought I had known tiredness, however I had never experienced fatigue like this before. I could barely life my arms above my head when getting dressed and also noticed that I was out of breath when walking 20 metres. It was a terrible time in my life, however I have the most wonderful wife who supported me through this.
On a Monday 24th Feb I went into work and apart from feeling extremely fatigued I was also nauseous. My wife called me to make sure I made it into the office OK, and I told her I could not do this as was nauseous. Anyway she came and picked me up and took me straight to Liverpool Hospital as directed by my doctor. After a 4 hour wait the hospital wanted to send me home because my symptoms were “unremarkable” and did not warrant being treated in emergency. My case was referred to a more senior doctor who tested my blood calcium levels. These subsequently came back as critical so I was admitted for the night to reduce my blood calcium levels. In the morning I was admitted to the “Haematology Ward” and a biopsy was subsequently completed. The results were then confirmed in 4 hours which were positive to Multiple Myeloma.
The telling of the news by my Haematologist to me was not the most positive experience. For such life changing news I wanted my wife to be there as well as she was 10 minutes away, and my Doctor could not wait. As such I had to be brave for the news, then had to sit there while I was told what the next steps were. This of course I did not retain because all I could think of was “F….. it’s Cancer!!!! My doctor left, then my wife came in with our 16 year old daughter. Not the easiest news to tell your wife then daughter at the same time. Needless to say we all broke down. An experience I believe could have been handled a lot better. After we took in the news and spoke to the staff again, I was told treatment would be via chemo starting the next day, and this would continue for 4 months. At this stage I was not sure what the hell I was in for, however the one thing I did know was that I had the most amazing support from my wife and her family. My family and support would come in later that day.
So much to think about, so many questions and no answers at this stage. It was a whirlwind couple of days.
It’s now been 5 weeks since that day changed not only my life, but the life of my immediate family. Within this time I have learnt much about myself as well as those around me. I have learned that this type of cancer is a 1 per centre, and is also incurable. I’m 49 so at the younger age of the spectrum of when this type of cancer is diagnosed. I’ve also been diagnosed with Amyloidosis just to top things off, so am feeling pretty special…..not.
When I reflect on the last month, chemo has not been as bad as I expected. There have been many times where I have been as “drunk” as my wife so delicately put it due to my reactions to the chemo drugs. I also suffered “chemo brain” so was not able to retain much memory of what was going on around me during this period. Thank god I have a wonderful wife who now became my nurse, my EA, and my brain. I was not able to even manage my appointments during the 1st couple of weeks such did I suffer “chemo brain”. My body before and after has wasted away to nothing. I dropped 12 kilos, and while I’ve put half back on I’m literally half the man I was before. I was quite a big and strong man previously, and am determined to get back to this. While I’ve been back in the gym for the past 3 weeks, I’m such a long way from where I use to be. That’s ok I keep telling myself I’ll be back there again. The 1st couple of weeks I hated walking in front of a mirror seeing what I’ve become. I’m now use to, and am happy that I’ve put some weight back on as did not want to continue with the emaciated cancer look. People now tell me I look good when I tell them I have cancer.
I’m now back at work full time, and work from home on the days that I attend chemo which is twice a week. I am fortunate in that I work for a large organisation, so was able to take a month off work while in hospital and working out the effects of chemo. By the way I’ve not lost any hair yet, so am hoping it continues this way. My employer has been absolutely incredible with the support they have provided so I did not have to worry about my job or income.
I’m nowhere near where I was before I became sick, however I’m feeling so much better and stronger 5 weeks later. I do know that I’ve got a long way to go, and it will be a hard road ahead. I have the most incredible support from my wife, her family, my family, my work, the hospital and their wonderful staff, and our local community. This has been an experience which my wife pointed out “it’s as though you’ve died, and you find out who really cares about you”. Finally, I have an incredibly positive attitude. How could I not be positive with the incredible support around me? I maintain that if I didn’t have a positive attitude then I may as well give up and die. I have far too much to live for, a beautiful wife and 16 year old daughter to live for.
So there you go, that’s my story so far. My intention is to share another instalment in the future of my progress. I’m also keen to hear other Multiple Myeloma suffers/survivors stories as I want this to inspire me.
Until next time.
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.