Grab yourself a tea or coffee and get comfy, because this will be a long one.
It’s been a while since I’ve updated on this. Things have been very up and down. We’ve had victories, we’ve had huge setbacks, we’ve had new scares. Things are much better now, but we’re by no means at the end of this journey. We won’t be for a very long time, but we can only go forward!
I feel it’s important to share the “who, what, where, how, when” because it might prompt someone to get checked or to take more notice of subtle changes in their health. Because we know the consequences if you don’t and the horror that comes with it. Plus, morbid curiosity is in all of us and most are too polite to ask. So here’s Karne’s story and it starts in…
Shortly after his 24th birthday, Karne was diagnosed with the big ‘C’. Grade IV B Classical Hodgkins Lymphoma, to be precise. It came out of nowhere, like a flash flood or a bolt of lightning that hits the ground. We had absolutely no idea it was coming.
The only indication we ever had was a small lump in his neck several weeks prior and a few very minor changes we rationalised to circumstantial factors (don’t ever do that by the way). The GP told him it was nothing to worry about and most likely inflammation due to a viral infection. It “went away” shortly after on its own and we never thought anything of it. Then, maybe 4 weeks later and by complete and utter chance, we found out he had full-blown Cancer.
I guess the story started after he went for breakfast with a friend the day after his birthday. Karne eats A LOT, so he had his fill and much of that was salty bacon. That doesn’t seem to have any connection to this, but I promise it will. After that, for the next 2 nights, he was having pains in his back and I figured he’d eaten too much salt and maybe had a kidney stone or an infection and made him go to the hospital to get checked out. I didn’t see the point in going to a GP because they’d have referred him there anyway. He didn’t want to go, but he was disturbing my sleep and NO ONE disturbs my sleep. So the following morning, since I worked around the corner from the nearest Hospital, I dropped him off and figured he’d be out with a prescription for antibiotics within a couple of hours.
I never expected the ‘C’ bomb would get dropped
He was there for a total of 8hrs, pretty much the entire time I was at work. They had taken his blood and did a lower CT scan, everything was fine with his kidney’s so the pain was a mystery but by sheer luck, they spotted a little bit of fluid on the bottom of his lungs. They wanted to check that out and sent him for a chest x-ray where they found shadows that they didn’t like. So he was then referred for another CT scan. We later found out that’s when they found a mass behind his sternum the size of a golf ball, another in his left lung and multiple smaller ones in his neck.
It was ridiculous; he was 24 years old
What we hadn’t realised at the time was that he was symptomatic for months. From the night sweats, which we put down to the fact it was summer and hot as hell at night – to the weight loss, which we factored in with him starting a very active job and cycling to work. We honestly just assumed he had a kidney infection. To then be told we were looking at a possible Cancer diagnosis… I’m not sure how we were meant to process that. Our lives changed completely within an 8 hour period. Even after he went in for a biopsy a week or so later, I still hadn’t taken it seriously. I just had this blind optimism that they had to be wrong and it this was all just a big misunderstanding.
Then the biopsy came back…
This is about 2 weeks after they’d done it and I was still trying to convince myself it was a mistake and everything would come back clear. Deep down I knew, but I was clutching at as many straws as possible.
He, very casually, called me at work and told me it was Grade II cancer but the Doctors were undecided if it was Hodgkins or Non-Hodgkins. I barely remember the rest of the conversation because I think my brain shut down. I’ve come to find I have a habit of doing this when I am overwhelmed. I just remember asking if he wanted me to come and get him from the hospital, but he was very nonchalant and said: “no it’s okay, I’m going to Dans to play Xbox remember?”. Despite what you might say, he was genuinely calm and just wanted to carry on with his day. I had to respect that.
I think I tried to keep it together on the phone because I didn’t want to make things worse for him. We said goodbye and I walked into the back office carrying this feeling I’ve never had before. I felt like the shell of my body was being peeled away from me and I was left completely naked and exposed to what was happening. No defences, no escaping, nothing. I can only describe it as this crushing wave of chaos and despair, but you’re completely numb at the same time.
It’s a blur after that. I do remember falling to my knees crying uncontrollably. Those really nasty can’t breathe, vomit-inducing tears. I just about managed to say it out loud to my colleagues who tried their best to comfort me. They were just as devastated as I was as he used to work with all of us. I don’t know how, but I managed to pull myself together and I stayed at work and didn’t go home. I carried on and got through the rest of the day.
9 weeks later
During that period he was subjected to several biopsies because they still couldn’t figure out which type of cancer he had, and previous samples weren’t good enough. They really needed to work that out first because if they gave the wrong treatment it would kill any healthy cells he had and it would spread like wildfire. They had to get it right and the waiting was torture.
Eventually, we were given the news that it was officially Grade IV Classical Hodgkins Lymphoma, and aggressive. Now, I worked in Life and Critical Illness insurance at the time and I knew if you are Grade IV of anything, you were f**ked, so I was scared. More scared than I’ve ever been. The only ray of hope we had at the time was when they later told us Grade IV with Hodgkins Lymphoma doesn’t mean you are terminal, it means it had jumped to an organ and in this case, it was his lung. Treatment started a week later and sh*t got real for us, this was actually happening. This was not a bad dream, this was our reality.
It’s been almost 4 years since then. He’s had more chemotherapy that I can count, biopsy after biopsy, he had to give up work, lost all his hair and 1 failed stem cell transplant and relapsed straight away. He had clinical trials offered and pulled at the last minute, breakdowns, more chemo and then finally a successful donor stem cell transplant in January of 2018.
To his credit, he has never complained once
He has never once felt sorry for himself or let it get him down. Not once asked, “why me?”. He uses it for humour and not for self-pity. Karne has been a total rock and a beacon of hope the entire time. Even after he was told he had relapsed 3 months after the first stem cell transplant – he was still as calm as ever and remained optimistic. “No point worrying about something you can’t control” he’d say.
Originally we were told this was a “good cancer” to get because “Hodgkins isn’t so bad” *major eye roll*. He was also a prime candidate for everything to go right, but we actually hit every obstacle and set back possible. It got to the stage where we were discussing palliative care and funeral plans. That’s how close it came, and it was absolute hell. But you wouldn’t believe how amazing he has been throughout this whole ordeal. He says he didn’t really have to do anything, and the credit goes to me for being his rock. I like to think it was a team effort!
It’s been just over a year now since he had his sisters cells. He’s still in remission and continued to amaze the doctors with his progress. He was able to go back to work 6 months earlier than expected. Recovered and essentially grew a new immune system in record time. He’s a walking 1 in a million case study and a complete and utter warrior.
I’d like to thank you all (you know who you are) for the support and well wishes we have received while all this has been going on, it means a great deal to us both and kept us going.
We joke now that bacon saved his bacon, because if he hadn’t eaten so much of it and frightened the life out of his kidneys, he may never have gone to the hospital in the first place. Told you it would make sense in the end!
And lastly, for heaven’s sake, if you notice anything weird or unexplained with you, go to the Doctor! And if you’re still not convinced, get a 2nd opinion. Don’t write it off and don’t wait around for things to get better. Had I not made him go with his “kidney pains”, chances are this would have been picked up far too late and the outcome could have been very different. Look after yourself and be vigilant with your health and wellbeing.
Until next time ♡