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Anne’s Story – Follicular NHL

My Journey So Far

Hi my name is Anne and I am 57 years of age and I have Follicular Non Hodgkin Lymphoma, Grade 1, early stages.

My journey so far – May 2007 I noticed a lump in my groin – it literally seemed to appear overnight, as it was painless I probably would have not have sought medical opinion except I had an appointment for my annual check up. It was deemed a possible hernia so we waited a few weeks to see if it disappeared, it actually grew slightly larger.

I was sent for tests and my journey began; when my Dr informed me of the results it felt surreal – I had never heard of Lymphoma I had no idea what it was or how it would change my life forever.

I was referred to Nepean Cancer Clinic and I recall sitting waiting to meet my specialist and thinking I would be told that there had been a mistake – here I was being told I had cancer, yet I did not have so much as a headache! 

I met with my Specialist Dr and he confirmed I had Lymphoma though more tests were required to determine which strain I had, plus the grade and stage. I had the relevant tests and the first results back reflected a "grey" reading and I required another bone marrow test to confirm the stage. I found this distressing; I wanted to get started on with the treatment to cure "this thing" – not realizing at that point that there is currently no cure for my type of Lymphoma.

My Dr recommended cycles of chemotherapy with Mabthera and finish off with a dash of radiation. I was very fortunate as I only required light doses and my body tolerated the treatments well and I continued working throughout.

The company I work for is incredibly supportive they allowed me to stagger my hours to suit my treatments, appointments and the tiredness I experienced from it. I believe that by continuing to work helped me through this period as it was about the only "Normal" thing occurring at this time.

I am still receiving Mabthera every 3 months. I am fine, in remission, still working, back drumming (sadly this has not improved my drumming skills) and dancing. When I was first diagnosed I wanted to resource as much as I could about it and I found it very distressing that the only people I find out about who had Lymphoma had all passed away from it. In 2008 I discovered Lymphoma Australia (Lymphoma Support and Research Association) and whilst on a trip to Qld these lovely people gave up a day to meet with me and I can't tell you the impact they had on my journey; here were these lovely people living full lives and with Lymphoma, they gave me hope.

What I found distressing about being diagnosed with cancer was that I lost my identity – I was no longer "Anne" but a cancer patient, it took around fourteen months for me to work through this and now I am Anne again though with an extra component "Lymphoma – Cancer" it no longer dictates who I am, it has changed my life but it no longer controls my life.

It has also made me examine all aspects of my life more critically and has changed my view on what is truly important and what is not. It has enabled me to cope more easily and not stress about the "small" things. I have become a member of Lymphoma Australia to give something back; I consider that it will be worthwhile if I can make a positive difference to just one person's journey.

The experience has taught me to appreciate that I have been and continue to be surrounded by the most wonderful people who at times in the past I used to take for granted. Like all of us my future is uncertain, however, I now take nothing for granted and treasure every moment and make each day count.

Anne 

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Please note: Lymphoma Australia staff are only able to reply to emails sent in English language.

For people living in Australia, we can offer a phone translation service. Have your nurse or English speaking relative call us to arrange this.