Diagnosis
On 28 August 2023 at 3am, I went to the bathroom and, as I was pulling my pyjama pants up, I noticed my inner right thigh was numb and tingly. As I got to my groin, I noticed a huge lump.
At first, I thought this was in my head, given it was the middle of the night. But I knew something was not right, so I went straight to hospital. To begin with, they thought I was having a stroke. It was not until I was discharged that I was ordered to have urgent ultrasounds and biopsies on my groin, neck and thyroid a couple of days later. I knew something was not right as the sonographers were taking a very long time and kept coming in and out of the room.
At 6pm on 1 September, I received a call from my doctor advising me I had an aggressive non-Hodgkin lymphoma. I recall saying to her, “is that cancer?” as I had no idea.
Symptoms Before and During Treatment
Ahead of treatment, I noticed lumps popping up all over my body. I could not even cross my legs, I had that many in my groin. I also got them in my elbows. Who would have known there are lymph nodes in the elbows!
I was extremely unwell during treatment.
I had 6 rounds of intense chemotherapy, with each session lasting 7 to 8 hours. My senses were all extremely heightened and the nausea was horrid. Each chemotherapy session brought different symptoms and varying severity.
After chemo 5, I spent the entire day on my ensuite floor as I vomited more than 30 times. I also experienced electric shocks, especially after smelling certain things like sanitiser, cleaning products or food. This was extremely debilitating and hurt my head a lot. My haematologist said her and her colleagues had never heard of this symptom. Not something I want to be special in!
Treatment and Side Effects
My treatment was 6 intense chemotherapy sessions. When my hair started to fall out at day 14 after my first chemotherapy treatment, it hurt so much. OMG it hurt. It felt like someone was ripping the hair from my head.
I struggled to sleep as I could not regulate my temperature.
When my hair started growing back, it hurt too. It was like I had little ingrown hairs on my head. The sensitivity was not pleasant at all.
I also had motion sickness. I could not have anyone in the house with me, as any movement, even just walking past me, made me throw up.
Accessing Treatment
I was fortunate to access treatment only 30 minutes from my house. Since relocating, I still need to travel 4 hours to see my haematologist for regular checks and tests.
Emotional, Physical and Financial Challenges
Cancer does not just get you physically. Spiritually, you start to ask, why me? Financially, there is the cost of treatment, having to stop work, medications and ongoing specialist appointments. The list is never ending, but the bills, mortgage and school fees still keep coming in.
This cancer has stripped me completely bare.
Mental health has also been a challenge. During treatment, I was so strong and determined to beat this, and I did. But now I am in remission, you are left on your own. Your brain does not function the same. Your body and looks are constantly changing as your hair grows back. Chemotherapy kindly messes with a woman’s hormones, which in turn affects everything from weight gain and brain fog to your immune system being super low, so you catch everything and anything.
Work, Family and Everyday Life
I had to stop work because I had to start treatment immediately. I missed so many social events with family and friends. My life went on hold for 8 months.
Support
I was very surprised my haematologist did not tell me about the services available to me. A friend suggested I reach out to Lymphoma Australia. My haematologist did not mention Lymphoma Australia, which was very disappointing.
My cousin also did a fundraiser through Lymphoma Australia in my honour.
Unfortunately, I only heard of Lymphoma Australia towards the end of my treatment, so I did not access services such as resources, a patient treatment pack, webinars, face to face events, support groups or the nurse care line during treatment. However since then, Lymphoma Australia has provided financial assistance for me to travel four hours to see my haematologist and undergo regular tests. I am sooooooooooo grateful for this travel assistance.
Advice to Others
My advice to someone who has recently received a lymphoma or CLL diagnosis is to focus on you. So many people will make your experience about them. Give yourself permission to be selfish and to do what you need to do to get through this.
I would do anything to help others going through this and I am happy to have my contact details passed on. I know I survived this to help. This is my purpose in life.
If there was ever a time I am grateful I am a mindset coach, it was through this mammoth experience.
Life in Remission
I am now in remission.
There is so much more I can and want to say, and I really hope my story can help others.
