Cancer talkReal Talk

Q&A with you can connect

By January 5, 2019 6 Comments

I have recently joined a group called You Can Connect which targets youth cancer patients in Australia. Their aim is to make sure that no person faces their journey alone. By creating this safe zone where patients and survivors can connect with one another and share their stories, lessons, growth, achievements, hurt, fear, sadness and so on, that they may find hard to share with loved ones who don’t quite understand the lengths of how they feel.

“All too often, we hear the stories of young people being treated alongside the elderly, far away from support of their families and friends. Beyond this, there is the added burden of study, work, friends and life. You see, cancer isn’t just the chemotherapy, the radiation, the surgery, the sickness.For many, the cancer journey beyond treatment can be just as overwhelming.” – You Can Connect

YouCan foundation are opening centres all over Australia for youths who are seeking support from other youths. Cancer is an extremely scary and shitty disease, there is no doubt about that. It can feel like a lonely battle as it may sometimes feel like the people around you can’t exactly relate. YouCan centres are making sure that it doesn’t have to be! Just recently they raised $1.4 million for the centres coming Sydney and Brisbane this year!

I’ve just done a Q&A with You Can Connect about my own journey and what I’ve gone through and learnt. When I first got diagnosed back in 2016, I was searching non stop over the internet to find personal blogs by young cancer patients but it was honestly so hard to find. Even over social media. I was lucky to have found a couple through out my journey but I’m incredibly grateful to have this system online as well as the centres that will be opening. Where I can connect with patients and survivors, get involved in group discussions and read blogs of others journeys!

YCC: How did you find out about your diagnosis? Any signs or symptoms?
KV: Well, I have quite a big story, but I’ll start from the very beginning. For about a year and a bit before I got diagnosed I had an extremely sore lower back pain. I was getting scan’s done which showed nothing of it. So I kept living my day to day life. Working, partying, repeat. I also had extremely itchy skin head to toe 24/7 which was the most annoying feeling ever. I took allergy tests which didn’t show anything, and I was lathering myself in scabies cream thinking I may have bed bugs!

I had scabs from itching so much all over my body and I was so embarrassed! Cancer never ever crossed my mind! I mean, why would it? No one in my family has had it! Along with these, I would break out in huge cold sores, randomly faint or vomit whilst working, I had dark circles under my eyes and I literally just had no energy what so ever. I felt like my body was deteriorating and in a way, I guess that it was. I put all of this down to an unhealthy lifestyle.

I was seeing a physio for my back and nothing was working, so she suggested to me that I go request for another scan. So on April the 29th 2016 I did just that. And to my absolute shock horror, it was cancer. The feeling of hearing those words “you have cancer” at the age of 21 is a feeling no one will understand unless you have heard those same words been said to you. I felt like my life turned upside down in a blink of an eye. My heart was broken.

YCC: Were you familiar with cancer prior to your diagnosis?
KV: Before cancer, I never had anything to do with it. No one around me had it. It was the unknown. What’s funny is that now that I do have it, I have noticed many, many people around me have it, had it or have passed from it. It’s crazy, and it’s scary! What I dreaded most was treatment. Mainly of feeling sick and losing my hair. I didn’t want this life. Why me? I thought. All my friends are going to be living their best lives whilst I am undergoing a horrific battle.

YCC: What was the hardest part about being diagnosed with Hodgkin’s Lymphoma at 21 years old? 
KV: I had to build up courage to tell my friends and the people around me what was going on. I knew I wouldn’t be able to keep this to myself as things were going to change. I was a social butterfly and if I randomly “disappeared” for a while, people would have known something was up. And there was just no way I was going to lock myself inside through this. To announce and repeat those same words the doctor had told me didn’t feel real. “I have cancer.” It made me shiver. I felt physically sick.

I started out with chemotherapy (ABVD) for about 2 months. During those 2 months I was researching like a crazy woman for other ways out. Honestly, I was desperate. I came across alternate therapies and it sat so well with me. I felt a strong desire that I just needed to do it. So I stopped chemotherapy. And I know, you’re probably thinking how silly I am for doing so, but I believe everything had a purpose and it’s definitely made me into the person I am today. So, I proceeded with alternate therapies for about a 1.5 years. During this time, I learnt, I changed, I grew and I became stronger inside. Unfortunately, for me, it didn’t get me to that finish line as I would have hoped for.

So, in January 2018, my scan had showed the cancer had spread quite a lot. Like, a lot, a lot. It scared me to the core and I accepted the fact I needed to resort back to chemotherapy. Two weeks prior to starting treatment, I had to get a metal rod put down the left side of my leg from my hip down to just above the knee. This was because a tumour had eroded a chunk out of my left hip bone and they were worried it could fracture during treatment. This surgery was the most physical pain I’d ever felt! I did 4 cycles of intense chemo called ICE whilst trying to recover and learn to walk again from the surgery. I then got the all clear. I was sooo incredibly happy. Until about a month after that I felt another lump in my neck and I just knew it was back. So, I relapsed. It was a huge stab in the gut but I knew the only thing to do was just keep pushing forward.

They put me onto another treatment called Immunotherapy (Brentuximab) for 6 cycles. This treatment also didn’t work. And I was left feeling heartbroken again.

I’m currently undergoing another Immunotherapy called Pembrolizumab which I am praying it works! I have a scan today (January 4th, 2019) And I am super nervous!

YCC: Were you able to connect with anyone else your age with your diagnosis? 
KV: Through out this journey, I found one girl who I really have connected with as she’s done alternate therapies as well and we seem to have heaps in common! It really helps to have people who understand your experience there so you can bounce off each other and lend advice or have a good cry/rant too. I have since opened up a lot more and have connected with even more cancer patients since! Each and every one are all strong warriors!

YCC: Were there any high points during your cancer experience/anything that you are grateful to have learned?
KV: This journey, as tough and ugly as it has been, has also been a blessing in disguise. I have gotten in touch with myself more than ever at such a young age. I found strength in me I didn’t know existed. I became more compassionate and I found an immense amount of gratitude and appreciation for life. I realised who I really am as a person and I found a love and passion for health. I literally have worked on every aspect of myself and I am much happier as the person I am today than the one I used to be. My dreams and goals now is to get into remission, build my body back to good health and help/inspire others out there who are facing hardships.

YCC: What would you tell another young adult who was just diagnosed with Hodgkin’s Lymphoma?
KV: My advice I would like to share with you all, is too let your friends be there for you. Don’t hide or lock yourself away. Your friends, family and even your community genuinely want to help you. Let them buy you lunch or let them come over when you’re having that bad day. It makes everything just that little bit easier. My small community honestly brightens up my life. Also, listen to your body. It is so important to stay in tune to what your body is telling you. If you need to rest, rest. Don’t push yourself. I used to push myself because I just wanted to do everything everyone else was doing, and I get that it might make you feel “normal” but at the end of the day you’ll only exhaust yourself. YOU need your energy to fight this disease. You can’t go giving it all out! Do things that are going to make your soul happy. That makes you feel so alive. For me, I love watching a sunrise or going for a walk amongst nature. And stay healthy! Eat beautiful, nourishing foods (when you can of course). If it wasn’t for good health (apart from cancer) my body wouldn’t be as strong as it is to fight.

I truly hope this helps anyone out there in some way. As hard and as ugly a cancer battle is, and truly it is so unfair. I wish so badly that this disease didn’t exist. But I think it is so important to find the light and the positivity, what ever that may be for you and grasp onto it. Hang onto it as much as you can! It is so worth it.

Mission Statement by You Can Connect 

Our mission is to empower anyone who has been affected by cancer. We provide our members with the ability to connect and share personal experiences about cancer with others who really understand. Our community is 100% user-generated and engages all who are involved in an individual’s cancer fight: the survivors, fighters, supporters and caregivers.

If you wish to connect and get involved online, you can click this link here

xo

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