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Inspirational Stories

Monica

Hodgkin lymphoma

Gauteng,

I am currently 23 years of age and I’m from South Africa. 

This is my story of my journey with Hodgkin lymphoma. This is a story of hope, a story of victory and a story meant to inspire those affected to keep holding on. 

Towards late October of 2019, I noticed a bump protruding on my chest. It was a very hard and rigid bump which didn’t move. I was still in university completing my post-graduate diploma in accounting, so I didn’t think too much about it, my main stress was to complete my degree. I just sent a picture of it to my family and we all agreed that I will just go to the GP and check it out, otherwise it should go away on its own. 

I went to the GP and he was suspecting that it could be a ruptured blood vessel but I would need a scan to make sure, in the meantime he had prescribed some bacterium medication for me to drink to clear anything going on inside in the meantime. I took it lightly and decided to continue on with life in the hopes that it would go away. Never did I suspect that this could actually be a tumor. 

In 2020, I had started articles at one of the big 4 accounting firms as I had passed my post grad. It was such an exciting time for me. However, I started to notice that this bump on my chest was starting to protrude excessively now and people were starting to notice. I couldn’t wear an open chest top or blouse without someone asking me what is happening on my chest. I started to feel very uncomfortable… So, I took it upon myself to go and see the doctor again now that I had medical aid/insurance. 

The GP that I went to was not sure as to what this bump on my chest was caused by, he was mainly suspecting TB, but he also said I need an X-Ray or a mammogram to be sure. He said if it was lymphoma, he would expect the tumor to be moveable, but it was rigid. So, I was then referred to the hospital to conduct the x-ray and mammogram, this was all towards the end of April 2020. It was such a crazy time because we had just gone into hard lockdown in South Africa due to the coronavirus outbreak. All this as well as doing my articles remotely as a first-year clerk. 

When I arrived at the hospital to have my x-ray done, that is when the rollercoaster of this journey officially began. I really thought I would be in and out of the hospital in no time, I mean it was just a chest x-ray of course. I had the chest x ray done and waited for the results everything was clear except for the tumor on my chest. So, they decided to do an ultrasound on my chest area to see what is actually going on. I remained calm because I was still certain that it shouldn’t take up the whole day and it’s nothing to fuss over about. I then sent my mom a text to give her an update on what’s going on as she was waiting for me in the parking lot.

When I had the ultrasound done, the lady who was performing it looked very puzzled when she was looking at the screen, I think that’s where I started to worry. It got worse when she told me that she is coming back as she is going to call a colleague to come to see and I must not panic.

So, what do I naturally do? Panic.

I started crying because I was starting to see that this is becoming serious. I completely lost it when her colleague came in and they are now discussing the fact that the tumor on the right side of my chest is now starting to grow on the left side of my chest. I was completely hysterical. They called in one of the doctors who then recommended that I now have to have a CT scan done and he was going to call my medical insurance for approval. By this time, I was crying hysterically because of all the seasons of Grey’s Anatomy that I have watched over the years, I was familiar with CT scans and MRI scans and what they were used for. 

I did the CT scan which was a whirlwind on its own. When I received the scan results later that afternoon, I was referred to a general surgeon. Never did I think I would spend the entire day at the hospital being referred from department to department, but here I was. When I got to the general surgeon’s room, she discussed the results of my CT scan with me and recommended that I do a core needle biopsy on my chest to determine if the tumor is benign or malignant. I was very scared as nobody in my family has actually had surgery before, so I would be the first, also why is this all happening to me at once? I was so confused. 

My surgeon reassured me that it is a minor procedure and I won’t need to stay over at the hospital. So, I agreed to do it. I did the biopsy and my results came back inconclusive, my surgeon contacted me and said we would need to do another biopsy and take more tissue. This time they would need to cut into my chest with a scalpel to get more tissue. I agreed because I thought that the inconclusive result was due to the fact that there wasn’t enough tissue obtained from the first biopsy. 

I had the second biopsy and it came back inconclusive again. This time I was absolutely hysterical, there was a lot going on at home because my mom also got injured and was in hospital and work was also hectic considering I was in my first year of articles. We are also still in the middle of hard lockdown in South Africa as it is the month of May 2020. My surgeon informed me that we would have to do another biopsy where they cut out almost half of the tumor. I was so frustrated because of the results and stressed cause my mom was already in hospital and I didn’t want to be in hospital too at that time. Having one family member in hospital is already stressful enough, so I asked my surgeon for a month to process things before we do another biopsy and she agreed.

The whole month of June was a rollercoaster for me, my mom came home and was recovering from her injury thankfully, but I was dealing with a mental war in my head due to the previous two inconclusive results I received. I kept trying to tell myself that it’s not cancer and maybe it’s something else, but deep down in my gut feeling I knew it was going to be cancer. That is what I struggled to deal with, I cried almost every night praying for it to not be cancer but I knew that if it was benign, I wouldn’t be going through so much hassle. I think things started to get final when I felt something growing in my right armpit. I knew something was really wrong then. 

On the day of my third and final biopsy, I informed my surgeon that there is something growing in my right armpit and she felt it, she said she would cut it out and send it for testing too. I spent a week in hospital after my surgery and then I went home.

A few weeks later towards the end of July my surgeon called me in to come and discuss my results, she had an oncologist with her as well. That’s when it sunk in. The oncologist diagnosed me with Hodgkin’s lymphoma. We still needed a PET scan to determine the staging, but currently it was looking like stage 2 because it was only on my chest and armpit. My surgeon also told me that they were able to diagnose the cancer from the lymph node they took out in my armpit. Not the tissue from my chest. I took this news calmly because I had already dealt with the hysteria in June of possibly being diagnosed with cancer and this was just a confirmation now. 

I did my PET scan and when my oncologist called me to discuss results and treatment plans, he told me that it was actually stage 4. This is because the tumor on my chest was affecting the pectoral muscle which is now another organ of the body. He assured me that even though it is stage 4 it was completely reversible. I was also scheduled to do 8 cycles of DBVD chemotherapy which would run for 8 months. I was so overwhelmed when he was telling me all of this information because I was struggling to understand when my life became this hectic? I’m only 22 years old and I haven’t even lived my life yet and now I have to fight for it? It was a lot.

I was scheduled to start chemo in late August of 2020 right after I had an implant inserted to protect my reproductive system and had a chemo port inserted. I did all of this and by the time I was due for my first chemo session I was extremely nervous. The nurses at the ChemoClinic were very welcoming and gave me all the books I had to read to learn how to look after myself throughout this journey. They administered my treatment to me and I got to meet other patients receiving treatments for different types of cancers. Being the youngest cancer patient in the ChemoClinic was also overwhelming for me and it was also part of the reason why I didn’t understand why all of this had to happen to me right now in my prime. 

Through having discussions with other patients with lymphoma, I could see that the treatment was working for them and they were fast on their way to good health. So, I began to draw inspiration from these patients in that if they can recover seamlessly then I will too. Throughout my treatment I had minimal side effects, I was supposed to lose my hair but I didn’t, I had some mild nausea and constipation every now and then, my nails started to darken and I started to develop a ‘chemo belly’. Nonetheless, I could see that the chemo was working because the remainder of the tumor on my chest started to disappear, this was such a good feeling for me. 

I had immense support from my family and close friends which I’m truly grateful for because I really needed a strong support structure. I decided not to share my journey while I was still going through it because I really didn’t want people to check up on me as if I am dying. I just wanted to live and enjoy every day when I had the energy to do so. 

Being a very spiritual person, I found it very hard to pray throughout my journey because I kept asking God why I was going through this because I didn’t understand why it had to happen to me. I have always been the strong one but this was just too much. This was a heavy hand I was dealt with. My family and close friends had to intercede in prayer on my behalf because I wasn’t strong enough to do it. I didn’t have the words. All I could say was “God you know my heart” and that was it. 

Halfway during the chemo treatment, I had a halfway scan, these scan results came back favorable and we could see that there was close to nothing left from the scan results. My oncologist then decided to reduce my cycles from 8 to 6. Meaning that I only had to do 12 sessions of chemo instead of 16. This was great news for me because although I enjoyed the company of other patients at the ChemoClinic, the process of chemo was very exhausting for me and I really wanted to live a normal life like my peers again. I was tired of going in every two weeks for treatment and having to live life around that schedule. 

I completed my treatment on the 11th of February 2021 and had my PET scan not so long after. When my results came back fully clear on March 29, 2021. I was so emotional and happy that this rollercoaster of a journey is finally coming to an end. I made it. I beat this monster, seamlessly at that. I was so grateful to God and my support system as well as the nurses at the ChemoClinic who walked the journey with me step by step. As well as my oncologist for the consistent reassurance along the way. 

I always knew that one day I would like to share my story but I wouldn’t rush myself to do it, I am a very private person by nature but I know that what I went through and what I conquered is bigger than me alone and there are so many people going through these battles in silence that perhaps need a little motivation or a nudge in the right direction. Being able to see patients successfully complete their treatments and lead normal lives was super inspiring to me so I knew that I have to share this to be able to give hope to someone else out there. 

Some words of encouragement that I would give to people that are fighting health battles or dealing with long term illnesses, is to never forget the one thing worth living for. I mentioned this in my video about my journey, that it is very important not to lose sight of that one thing in life that makes life ‘worth it’ for you. Hold onto that and hold onto your dreams because that will give you all the hope you need. Such illnesses or health issues will become a part of your life as some or most of them are long term, but it should remain as just that, a part of your life. Don’t allow it to take over your whole life, it is very important to remember that you are not living for the specific illness or disease, you are living despite of it.

That being said, yes, it’s okay to acknowledge that your life and your daily routine will change because of the issues that you may be going through, but never lose sight of asking yourself how to continue to achieve the dreams you want to achieve despite what you are going through. Dreams give us hopes for the future and also help us live our present lives fully in the hopes that we are working towards something greater, and this will shift your mindset focus from just only thinking about the disease or illness.

In addition to this, don’t stop doing the things you love with the people you love, this makes you feel normal and is very good for the mindset, the mind heals before the body does, so it’s very important to try to keep a healthy mind in such times. 

Monica Sithole