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Tracey’s Story – Stage 4 Follicular Lymphoma

I'm a 43 year old woman, who has always considered herself strong, fit and healthy. The 15th September 2006, was my dad's birthday. In the evening on this day I was due to sing at a restaurant gig with my three piece band. My parents, their friends and many of my own friends and work associates were coming along to this gig and it was a great day. I went to work as usual in the morning – and then went along to an appointment with a new haemotologist who had requested to see me following some blood tests. I had found some lumps on my neck and groin initially which prompted the blood tests, but I still thought it was probably "post viral" as most people around me had had the flu. The day was shattered when I learned that it was extremely likely that I had a big problem with my blood – pointing to some kind of late stage Lymphoma. I had to go straight into hospital for tests. All activities were cancelled, I was whisked into hospital immediately for further tests, my poor parents and husband were thrown into complete panic – my friends and workmates were left wondering what on earth was happening.

After a few days of needles, scans, a couple of biopsies, and buckets of frightened tears – I found out that I had Grade 1, Stage 4 non-Hodgkin Follicular Lymphoma. Bone Marrow involvement. Spleen enormous. (who knows when their spleen is enlarged??!! I didnt even know where it was!). Lucky for me my specialist was a young, brilliant chap who told me, honestly, exactly what I had, gave me the scientific detail – and also advised what the current options for me were. I needed treatment because the NHL was starting to get a bit dangerous for me and I had probably had it for years but had no clue, no symptoms. So it had merrily grown away with no interference! I couldnt believe it, particularly as I was so healthy , or so I thought – riding my bike to work, running – eating well and leading a very busy active life. But it just goes to show that it can happen to anyone. And if you are saying "Why Me?" which I did a lot in the beginning when I felt really sorry for myself, that eventually turns into "Why NOT me?" when you start finding out that lots of people from all walks of life can be affected by cancer.

The point is to research what you have, find out the options – take your time and make your choice about what path you will take. For me, I decided to go on a clinical trail of Radioimmunotherapy/ Mabthera. It was that or CHOP-R. But me being the "research queen" – I thought I'd have a crack at something different and see if A. I could get into remission with a new treatment and B. help the researchers to learn more about something other than chemo as a first line treatment.

To cut a long story short – as I am writing this it is 12 months later – I had initial Mabthera immediately – and then my radiation dose in November 2006, followed by 3 monthly Mabthera, and I am doing fine. Even along the way during treatment it wasnt so bad. Myself and my family and friends still managed to find humour in things and also the nursing staff universally are always wonderful people who will get you through the yukky bits.

For me now, PET/CT Scans now cannot find any tumours or lymphoma activity (which is amazing seeing as I had such a huge tumour burden). I have had a few side effects which are minimal and easy to deal with.

The main reason for me writing this is to encourage others. I dont know what this journey holds for me next. But I am living every minute to the full and making sure that I do all those things I've been meaning to do for years. Now is the time! There are many treatments available for Lymphoma. Many of them will get you into remission. Even partial remission for Lymphoma is a result – especially Follicular as it may take many years to grow anyway and any reduction in your body is good. Although its a shock when you find out – you can get through it and life can be good. You will be afraid of the treatment, but invariably its not as bad as you think it might be. The funny thing is that my life is happier now than before, which is bizarre, but I can only think it is because you get a shock, deal with it daily for a while and then realise that there is a lot to live for every day. Each day is precious and none of us know what is around the corner. 

🙂 We are all headed in the same direction… So be happy and cherish the people you love and enjoy something nice every day – even if it is just coffee with a friend or a walk on the beach with your dog. All life is is a series of "nows", so make each now count. And who knows, if you live healthily and make sure you rest and think happy thoughts – you just might die of something else when you are old and grey, like everyone else.

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