Jess’s story as a partner

It was early September when the diagnosis was finally handed down to us. Hodgkin Lymphoma.

I remember the conversation clearly, it was a Friday, 4 days post surgery. We weren’t expecting the news until the following Monday.

When the doctor walked in, Ben was sitting on the edge of his hospital bed and I was sitting behind him in my seat, gently rubbing his back and encouraging him to keep moving a little bit more each day.
When the doctor said the words ‘Hodgkins Lymphoma’ it felt as though our world had tilted on it’s axis.
Tears burned my eyes and silently fell down my cheeks. This beautiful man that I had only just found in my 28th year of life had cancer, a disease that takes away the lives of so many beautiful humans each day, each year. A lump formed in my throat and thoughts ran rampant in my head. ‘What if I lose him?’

That night driving home I screamed so loudly in my car that I momentarily lost my voice. I called my mum in tears. In that moment she knew that I had fallen in love with him, that my heart was linked to his. Yet, she still told me that I could walk away if it was too much. Both of Ben’s parents did too and so did he. I didn’t listen to any of them. This wasn’t too much. I was where I was meant to be and I wasn’t about to walk away.

Then the hospital was in lockdown. Ben had just been given this shocking diagnosis and then wasn’t allowed any visitors again until mid afternoon on the Monday. Everything was a blur following his diagnosis.
Upon discharge the process of banking sperm for our future children began, he had a PET scan, a bone marrow biopsy, a haircut. Everything happened so quickly.

Somewhere in all of that crazy time, we met with the head Haematologist at the Princess Alexandra Hospital. This was our second appointment there but at this one, we were given news that left both Ben and I in absolute shock and still to this day it get’s me teary just thinking about it or hearing Ben say it. The doctor informed us that he had Stage 3 Advanced Hodgkin Lymphoma and that if he had been left undiagnosed he would only have 3 to 6 months left to live.

From there he explained our treatment options and gave us all the information you could imagine. It was incredibly overwhelming and difficult to wrap our heads around.
I was in tears the rest of that appointment and clinging onto Ben as though he was my lifeline. When we made it back to our car, Ben and I looked at each other with tears brimming in our eyes. How was this possible? We’d only just found each other and could potentially be torn apart? It wasn’t fair. A single look said it all though, we were going to get through this. We were going to fight this cancer as a team. We weren’t going to let it destroy us or take him away when he still had so much left to live for. He was 29 at the time, life has really only just begun.

That was the night that we sat down and discussed the treatment options. We had Beacopp or ABVD. Hard and fast or slow and long. One would last 3 months and one would last 6 months with the possibility of radiation therapy at the end. We chose quality of life over length of time the treatment would take. We took it slow and steady with ABVD.

On October 10th 2021 Ben began chemo therapy to save his life.
Walking into Oncology Daycare was like walking into a warzone, every single person in every chair was a warrior battling against a war inside their own bodies. All at various stages of treatment and all receiving different treatment. We were new to this, we had no idea what to expect other than what the literature had told us. A pharmacist sat with us and explained all of the drugs in great detail but I often wonder how much information actually sank in.

It was overwhelming and I couldn’t stop looking around and wondering what kind of stories everyone had to tell or if they could guide us through this scary process. How sick was Ben going to get? How hard would this be to handle? Could we do it alone, just the two of us in our little house together? Did my independent research of ABVD truly prepare me for what the love of my life was about to endure?

The next few days, we were home together and I was doing everything I could to make the whole process as easy on him as possible. I was trying to make sure he had  everything he needed, to make sure he had fluids and was keeping some sort of nutrition in his system despite the concoction of chemicals flowing through his veins. I can’t remember a whole lot about the following week, I know we tried to be as normal as possible because maintaining a sense of normality was key in our approach to this  monster in our lives. We went to work, we made dinners together, we fell into a little routine of being a new couple living together and starting a life together.

On October 19th , just two days before Ben’s second dose of chemotherapy, I fell down our back stairs while taking the rubbish out. I remember the exact moment that my ankle dislocated and broke, I remember being on the ground at the bottom of the stairs screaming out for Ben and saying I think I broke my ankle. I remember him placing his jacket around my shoulders, calling the ambulance, my parents, his parents, our neighbour sitting with me trying to distract me from the pain. I was in shock. For a hot minute I couldn’t feel the pain but when it hit it was such a shock to the system that I began crying and hyperventilating.
With Ben rubbing my back, I looked up at him with tears in my eyes and asked, ‘who is going to take you to chemo on Thursday?’ Bless his soul, the boy laughed and said ‘you dope, focus on you right now and we’ll figure the rest out.’ That night I was told I had a complete dislocation of the right ankle and a trimalleolar fracture around the back of my ankle instead of around the front. I ended up requiring surgery to have 12 screws, 2 plates and 1 tightrope placed to mend my ankle. I also had to move back home to Mum and Dad’s because I was in a wheelchair and unable to go up and down the stairs at home.

The following months had their ups and downs for us both, together and apart. On December 2nd 2021 we were 2 months into treatment and had the first PET scan that we would have during treatment. Sitting in the office, we nervously held hands and kept looking at each other unsure of what the news would be. We had hope that the treatment was working based off of what another doctor had mentioned and signs we had seen within Ben.
Yet, we were entirely thrown off when the Doctor turned to us and announced that after 2 months Ben was in complete remission.

REMISSION! After 2 months? How did that happen?

We didn’t know what forces had aligned to make it happen but when we looked at each other, we both had tears in our eyes and the smiles on our faces were brighter than I can even describe. Very quickly we started telling our loved ones but we also decided to keep it as a special Christmas surprise for his Mum’s side of the family. We wanted to make it a special announcement and share our joy with those who loved us most. December 25th 2021, we shared the news. Tears were shed and a collective sigh of relief heard and felt  amongst us all. We were all scared. All concerned. Now, we were all relieved and excited for the future.

Throughout the process Ben and I were working, paying our rent, paying our bills, trying to have little moments out together to celebrate life, celebrate normality. Give us an escape from the harsh reality of him being so sick despite being in remission.

It didn’t feel real just yet because he still looked sick. He lost his hair by week 2 of treatment.
Hair, eyebrows, eyelashes, all gone.
At this point in time I have known him longer without hair than what I have with it. To be honest though, I never really noticed it too much. All I ever saw was Ben, the man I love, my warrior, my protector, fighting for his life, fighting for our future, fighting for our future children.

Somewhere along the way we made the joint decision that we were going to do whatever we could to help raise awareness for Lymphoma based cancers. There wasn’t enough out there for people to openly reflect on or to gather information.

I remember finding Lymphoma Australia, ordering pins and bracelets, reading their articles and finding comfort in their extensive knowledge. We never expected to partner up with them for our race team, Longland Family Racing. Yet, here we are. They are prominent on our superkart, on our team wear, on Ben’s race suit. They are prominent in our hearts.
Forever etched into our hearts and forever a piece of our history and our story.

March 10th 2022, Ben completed chemo!

We were finally done! We had finally crossed the finish line! It was an accomplishment that had felt so far away for so long. One that we kept talking about and kept saying that once treatment was finished we’d finally truly be able to grasp the idea of him being in full remission.
That same weekend, we both came down with Covid. We both had the antibody infusion down at the Gold Coast University Hospital, we both reacted differently to covid. Ben bounced back quite quickly whereas I was struck down quite hard by it. It has had lasting effects for me, it’s triggered my asthma to flare back up again and become a prominent thing in my life once more. Even when Ben was feeling his worst, his natural instinct was to try and look after me, which he did spectacularly. I am so incredibly lucky to be loved by him, to experience what it’s like to share a life with someone who is your teammate. Life can be crazy, beautiful, chaotic and scary all at once.

We’re now in July of 2022, Ben has completed 12 rounds of ABVD and 17 rounds of Radiation Therapy.
He is in complete remission, his blood work is looking beautiful, his hair has come back and everything within his body is returning to normal.

We’re back in our home, we’re taking steps towards our future together. We’ve set goals, we’ve hit the track racing our superkart and we’ve gone on our first holiday together. We’ve shared so much laughter, we’ve shared tears, we’ve shared frustration and everything else imaginable.

Looking back, I want to reassure that new couple that everything was going to work out for the best, that they are incredibly lucky because once every 6 hours an Australian passes away from Lymphoma cancer. We escaped that statistic but only just. Everyday I thank my lucky stars for Ben, his fierce determination, strength, love, trust, enthusiasm, infectious laugh, quirky personality, comfort, support, thoughtfulness, courage, bravery and so much more. He always says that we defeated cancer as a team and I believe that. It takes an army to fight a war and we had an army surrounding us during this particular war. I don’t think I’ll ever be able to thank everyone for everything that they did during the last year or for what they will do throughout the rest of our lives. Our family, our friends that are an extension of our family, they are the most incredible people in the world. The other warriors that we’ve spoken to who shared their stories with us and their wisdom, thank you from the bottom of my heart. Without those talks, the brutal honesty, the open conversations, I don’t think we would have survived this in the way that we did.

No two journeys are the same but this is ours and I am incredibly proud of it. I will always say that we got lucky, we won our battle but we do not know what lies ahead for us. All we know is that together, we can overcome absolutely anything. We’ve come this far, we can’t let anything knock us down now.

I don’t regret a single second of the last year. I don’t regret a moment that lead to Ben and I finding each other Tinder of all places and creating a bond so strong that my soul has been able to recognise that he is my missing piece. He is my soulmate.