I never thought I'd be writing a post about my own experiences on this subject. I mean, who wants to be writing about cancer with themselves as the main character? It wasn't on my wish list of experiences. But it did happen, and I survived to tell the story. I'm here.
But the story isn't over. I've had six months of chemotherapy, a clear PET scan after the first four treatments (2 cycles as they call them), and now it's 'over'. I know that the prognosis is good, but there's a certain amount of guess work.
Has it gone forever? Will it return? Has my immune system improved? Will I end up with a different form of cancer? Nobody really knows what caused it, so if the thing that did cause it still exists (risk factor), does that automatically mean it will return? Was there something I was doing to cause it? Was everyone just being polite when they told me 'there is nothing you could have done to cause or prevent it'? These are the sorts of questions that can plague the mind of someone who has just finished their treatment.
Thankfully my mind doesn't wander too far down these rabbit holes. But it's early days and the sun is shining. I might feel differently next time I catch a virus and a fever settles into my body on a miserable winter's day. And the questions would be perfectly natural given the circumstances.
As Lymphoma was my experience, I thought it a good time to share a little bit of information on what this blood cancer is, and what helped me to get an early diagnosis. September is Blood Cancer Awareness Month, and as Lymphoma is a blood cancer, what better time to share this information whilst it's fresh in my mind.
Suspicions
I caught a virus, spent a few days in bed with a fever, and within that month I noticed a lymph node appear above my collar bone. Within two months it had grown to a size that my doctor deemed significant enough to fast track me on the cancer path.
Symptoms
Other than the lymph node, I just wasn't getting better after the virus. I was generally fit and healthy, but I was struggling with energy to do activities that I would easily do prior to falling ill. Every time I had bloods taken for analysis they came back normal. This isn't unusual. Some people also have symptoms that can be easily mistaken for something else, for example, the menopause.
Diagnosis
I was initially referred to an ENT specialist who checked my ears, nose and throat, all of which appeared healthy. That same day I had an ultrasound that showed an increase in the number of lymph nodes around my collarbone. It warranted enough concern for them to attempt a fine needle extraction. The results of which came back inconclusive as the sample they'd taken couldn't determine the cell structure.
I then went under general anaesthetic to remove three lymph nodes. The results came back, and by this time I'd been referred from ENT to Haematology (not oncology), as a blood cancer was under consideration. The results of my surgery suggested a high likelihood of lymphoma, but the only conclusive way to diagnose it is via a PET scan.
The results of my scan confirmed I had Stage 3 Nodular Sclerosing Hodgkin Lymphoma.
It was hard news to swallow and I didn't quite believe it, but my consultant infomred me of all the next steps and shared that my outlook was good. After discussing various impacts of treatment and the outcome of assessing my PET scan, it was determined that I would undergo six months of an ABVD chemotherapy. I was reluctant to say the least, but I'd been told it was aggressive. I had to take this route.
Once the news sunk in and I was preparing for my first treatment, I made a conscious decision to treat the chemo as something that was going to heal me. But no matter how positive I tried to view the situation, I cried the minute I saw the bags of drugs laid out in front of me for the first time. Taking medication went against my values.
Lymphoma Awareness
It is fair to say I knew nothing about lymphoma. I initially had to check it was a form of cancer, because I was hoping (in denial) that I didn't have cancer. I was generally so healthy. I soon discovered that I didn't fit the demographic of what was mostly a young person's diagnosis, and I was mostly symptomless. It was a steep learning curve.
The cancer care I received was mostly superb, and this comes down to the excellence and heartfelt intentions of the nursing staff. They were not only well trained, but they were also interested in making the best out of a bad situation for all of their patients. They were simply wonderful. I will be forever grateful for the staff at The Headland Unit and the Haemotology department at The Royal Cornwall hospital for everything.
Beyond the hospital, there are many support services that are better equipped to share more informed information about blood cancers. I can only share my experience of my one type of lymphoma and how it went for me. There are various types of lymphoma and lymphoma is only one type of blood cancer.
To ensure you get the right information delivered to you, I hand you over to the below organisations for more information.
And just remember, I was healthy and mostly symptomless with good blood test results. But I just knew my body wasn't right. The lymph node above my collarbone was asking me to pay attention. Always trust your body!
Lymphoma Action
The UK's only charity dedicated to Lymphoma is Lymphoma Action. Their Symptoms of Lymphoma page is really informative.
Lymphoma Out Loud
Their mission is to raise awareness through the stories of those who have experienced a lymphoma diagnosis. Their Be Body Brave campaign raises funds and awareness. They have a great Signs and Symptoms page.
Lymph System Knowledge
I knew very little about my lymph system, but I am now interested in learning to support mine to stay healthy. The Lymph Love Club is a useful lymph literacy organisation that I follow, and I have purchased The Book of Lymph by Lisa Levitt Gainsley for self-care lymphatic massage, which is always very light touch.
Blood Cancers Aren't Just Lymphoma
I only know about my particular variation of lymphoma, and I'm still not an expert. And lymphoma is only part of the picture when considering what blood cancer is. To understand more, head to Blood Cancer UK for detailed and accurate information. Every September they campaign to raise more awareness and are the best starting point for information.
From my one form of blood cancer, I hope that sharing my experience highlights how symptoms can be minimal and go undiagnosed. That there are so many variations that it's always worth contacting your GP if your body is telling you something is wrong or just isn't right. Your lymph system is designed to kick in when you're unwell, but sometimes it just behaves in a way that sets off your inner alarm bells as it did with me. It is all of these things and more that Blood Cancer Awareness Month hopes to highlight.
I hope these snippets help in some shape or form to help early discovery of things that don't feel right. But more so, I really hope this whole post proves never to be relevant to you or those you care about.
Wishing you well,
Marie
If you'd like to read more, take a look at my previous post: Cancer Care For The Ones You Care About