Diagnosed with lymphoma 1, 2, then 3 times

Days later, after lots of tests and biology’s I knew the damage, Anaplastic Large Cell T-Cell Non-Hodgkin’s Lymphoma, a super aggressive and super rare but also very treatable lymphoma that I only needed 6 rounds of CHOP chemotherapy to get rid of.

Apart from the swollen gland in my neck I was completely normal, with no sweats, no weight loss, no pain at all. I honestly thought it was glandular fever.

Chemo was horrible, my hair started falling out, my body wasn’t happy and for the first time in a long time I was really struggling, BUT two rounds later I got some great news that the treatment was working so well and all the cancer cells in my body were gone (YAY). Only 4 more rounds to go and I could get back to living.

A second diagnosis

But my body had other plans, soon after this scan I started feeling sicker from each chemo, this included some pretty shocking headaches and fevers that landed me back in hospital, through emergency, not once, not twice, but 6 times (each time I had to get covid tested, not fun!)

We all knew something wasn’t right, but test after test everything was coming back ok, it wasn’t until the doctors tested my spinal fluid that they found I had a secondary cancer, CNS Lymphoma. This guy was very hard to find, instead of being a big tumour, it was just lots of little cancer cells hanging out in my brain fluid, floating around and causes me some serious grief. And to make things even more complicated, I’m the 5^th person in the world to be diagnosed with this cancer, so treatment for this was a bit of a gamble.

I don’t remember much from my secondary cancer diagnosis, I was sick, real sick – I couldn’t eat, my headaches were so bad it actually felt like my head was going to explode, it affected my vision and my speech, I couldn’t open my eyes if there was any light in the room, it was too much. This went on for two weeks, and I didn’t know it at the time, but it was real touch and go, if those sneaky cancer cells had of got into my brain, I am sure I wouldn’t be here today. After a dose of a new chemo that crosses the blood/brain barrier symptoms started to ease (this took about two weeks). When I came ‘good’, (could open my eyes again and got off the really strong pain medicine), I was very weak and fragile, I couldn’t even go to the bathroom without help.

We continued with the MATRIX (blood/brain chemo) chemo for 4 rounds in total, then I was going to have a stem cell transplant. This chemo was a lot my intense, I had stay in hospital to have the chemo for 5 days, then go home for a week until I got neutropenic and then go back to hospital for 5 more days. This went on for 3 months. But I knew it wouldn’t last forever so we powered on, we had to!

Ready for a Stem Cell Transplant – or was I?

After the 4 rounds of MATRIX I was ready for my stem cell transplant, the big finale. So in I go, ready as I will ever be!
However, there is another BUT in this story, a few days before I went to hospital I had this stabbing pain under my arm, it was mighty painful, so bad that I couldn’t even lay on my side, obviously I had to mention this to the doctors, and after another biopsy it was confirmed that my first lymphoma had returned. So there I was, sitting in a hospital bed, getting told for the 3^rd time this year that I had lymphoma and instead of getting my stem cell transplant (which was going to be the end of my treatment) I have to go back for more chemo.

With no delay’s, a new chemo started that very same day, this time it was Brentuximab. This chemo wasn’t too bad, I didn’t have to stay in hospital with it and I didn’t really get sick from it either, exhausted but not sick.

4 rounds later, I was in remission, and I was ready for my stem cell transplant (again), the date was December 1^st, I didn’t even want to mention that this was happening to anyone in case something changed again, it wasn’t until they actually started treatment that I believed this was going to happen, I was actually excited, which is so weird because the transplant sucked! Three weeks in hospital with only 1 visitor a day and days when I felt like I was only kept alive by the drugs they gave me, but I survived, slowly, and I mean slowly I started getting my life back.

The finale

In total I had 16 rounds on chemo and a stem cell transplant in just over 12 months (I had to do a few more rounds of Brentuximab post-transplant). It wasn’t until I stopped treatment and had some space and time to breathe that it actually dawned on me what had happened. I still struggle to talk about this experience, I think I always will, and I really struggle with trusting my body to not get sick. One day, I’m sure, this won’t be daily struggles for me anymore, but that is not today and I’m ok with that because I know it will happen when it happens.

Now, 4 months post any treatment, we (my fiancé and our doggie) are off healing ourselves on an epic journey up the East Coast of Queensland in our caravan. Just what we needed to reconnect and heal from this super challenging, life-changing event that we went through.

My advice to other patients:

This journey is slow and hard, I don’t think I was mentally prepared for it. I think you just have to live each day, have a few small goals that you can achieve every day (like have a shower, journal entry, find something beautiful about each day, talk to a loved one), then as you start getting stronger you can add more goals to your list.

The recovery stage doesn’t end when you leave hospital, it is slow and it does take months but every day you get a little stronger and a little bit more of your life back until one day you don’t need a day nap or you can go for that 10km walk that you have wanted to do. It just happens.

Also, anyone who gets a SCT is brave to me, and a bloody survivor and they should be so proud of themselves.

Life motto: you’ve got this