Being diagnosed with follicular lymphoma

It’s really quite amazing how the narratives we tell ourselves about the things that happen to us can either change or cement our perspective. And the stories will feed our beliefs, and ultimately what we perceive to be true. What might be a catastrophe for one person, paralyzing them for years, might be the opportunity another has been waiting for and they might grow in ways that could never have been anticipated. It might be a turning point.

My mind tells me lots of stories about my life. How hard done by I have been, how awful some of the things I have seen were, and it asks why did it have to be me? But ultimately, why not me?  What makes me so special that I should not have to experience difficulties in life?

So on 3 January, it was a year since I received the diagnosis of follicular non-Hodgkin lymphoma.  I had started to write a blog about receiving the diagnosis, how I spent most of the day alone at the radiology department at the Royal Melbourne Hospital having scans and seeing the panic in other people’s eyes about what they saw. It was shaping up to be a bit self-piteous, that blog.  So I stopped writing it.

Because I’ve moved beyond that story.  My diagnosis was one of the best things that has happened to me in recent years. Of course I can’t deny the shock and panic I felt at the time. I can’t pretend that I didn’t think obsessively about it. And I can’t fantasize that I laughed it off.  Yes, the last year has had its difficulties.  Don’t they all? But the most important thing I got to do was to hit the pause button on my life and start to take the most exquisite journey of all – the journey within.  The journey to self-love and healing. And I am now far happier than I was in the months leading up to the diagnosis, or even for as long as I can remember to be honest.

So what is follicular lymphoma or fNHL? It is a cancer of the lymphatic system, more particularly the B-cells or lymphocytes, which forms tumours in the lymph nodes through out the body.  It is low grade or indolent which means it progresses very slowly.  The result is that many people do not notice it until the disease is quite advanced. One of the oncologists told me that Sigourney (the alien mass in my abdomen) had probably been growing for about 2 years before I noticed her.

According to Lymphoma Australia, fNHL comprises about 20 – 30% of all non-Hodgkin lymphomas.  In Australia, non-Hodgkin lymphomas have doubled over the past 20 years and are now the 5th most common malignancy in men, and 6th most common in women. They typically affect people over 50 but are most common in people over 65 (This is not me – I’m in my mid-40s). Because of this and its indolent nature, people diagnosed with fNHL usually die of other causes ie they reach old age and fall prey to other conditions.

fNHL is generally first observed in the form of painless swelling or lumps in the lymph nodes in the neck, armpits or groin.  I also had a lump at the base of my neck.  I don’t know how long it was there for, but once it was pointed out to me, it was as obvious as the light of day. Other symptoms include tiredness (some friends might remember my facebook posts asking if anyone had seen my oomph?), shortness of breath (yes, breathing exercises at yoga were a chore), loss of appetite (this was just starting to happen to me as clearly there just wasn’t quite as much room to take in food) and night sweats (these I didn’t have).

fNHL is said to be incurable.  Treatments, often chemotherapy in conjunction with a monoclonal antibody such as rituximab, or in my case, obnituzimab (currently being trialled), are directed solely towards management of the disease. If there is no threatening tumour load, then people might be put on “watch and wait” and not receive treatment.

Where there has been treatment, it appears that over time, fNHL becomes more and more resistant to treatment and ultimately, treatment is not effective. I’m not that interested in the long term statistics. Using statistics is a bit like pointing the bone – if someone, who has strong magic* or influence, tells you the statistics and the likelihood of death, you are more inclined to believe them and succumb to the inevitable fate. It is important to remember that the numbers do not tell the stories of those who exist at the edges of, or outside, the data. And no one’s body wants to destroy them. It wants to heal.

The causes of fNHL are unknown. Studies are being done and I’ve participated in one that seemed to focus on consumption of meat and exposure to sun. There are also thought to be links to:

  • viruses that compromise the immune system such as Epstein Barr (including glandular fever), HIV, and hepatitis C.  I found out only this year that at some stage I had glandular fever.  I have my suspicions about when and know that I only pushed my body harder and harder as I was not diagnosed;
  • chemical exposure to pesticides, fertilisers or solvents.  It’s common for people who live on the land.  I spent my formative years living near market gardens and playing in my parents’ plastics factory.  I also used to coat my hands with a glue that set like skin and spend hours pulling it off.  It fascinated me that it would pick up the faint lines of my fingerprints;
  • infections with certain bacteria; or
  • family history although this is uncertain.

I was told it was lifestyle factors (for more on this see my blog here) and the more I learn, the closer this seems to be to the truth. There are a number of genes, close to 100, that can predispose a person to fNHL, but the mere presence of the genes does not guarantee cancer.  It’s a bit like an aeroplane crash – a number of things have to go wrong before a plane will fall out of the sky. The loss of one engine or the failure of one circuit is not enough. So to end up with fNHL means that lots of things have to come into play. The behavior of genes and whether they will ultimately alter the structure of cells to cause them to become cancerous depends a lot on lifestyle and environment.

See Sigourney on the left. Don't see her on the right. Same deal with the mass in my neck.

See Sigourney on the left. Don’t see her on the right. Same deal with the mass in my neck.

It might just be possible that fNHL is capable of being turned on and off. The first example I found of this was Kristie Blaikie’s story (referred to in my blog here and which gave me great hope).  More importantly, I have actually met a woman who was diagnosed nearly 4 years ago with a number of tumours throughout her body.  She has had no treatment and is doing extremely well. She has no apparent masses.

That same woman introduced me to a website and community of people diagnosed and living with fNHL which can be found here. Through a focus on diet, sleep, exercise, optimal year-round vitamin D and psychological factors (“the will to live”), a number are thriving despite their diagnoses.  Many have had treatment, more than once, but the periods of remission between treatments are longer than the statistics would have it.

So the story I tell myself now about my diagnosis is that this is not the end of my life. A year on I feel and look healthier than ever.  Sure, my life looks different but it is just the beginning of a new chapter, involving a complete overhaul of my lifestyle. It was not a catastrophe by any stretch of the imagination – I love my new lifestyle, which pretty much comprises juicing, meditating, healing work, gently exercising, taking photos and writing. Of course the challenge will be to find a way to “work” that complements, or integrates, this lifestyle. But I’m pretty sure it can be done. It’s just a constant process of letting go of old ideas about what my life should look like.

If you happen to have been recently diagnosed with fNHL, I hope that you are able to turn your story around too. Be sure to check out the resources below.

Be well. Be happy.

And so be it.

PS [5 June 2014] Since I wrote this, I have noticed that it is the most frequently read post on my blog. I sincerely hope that it is helping people. Each day I become more and more convinced that lifestyle choices are the “tap” that can turn fNHL on and off.  I have heard of a story of a man who has lived for over 20 years after his diagnosis with no treatment, just by managing lifestyle.  I have heard of another who lived well for 15 years but then reverted to “old habits” and the disease was turned on again. I also met the author of this BLOG and an e-book about the unusual therapy he has chosen and which seems to be working for him. As I wrote in my post Being Willing to Believe, it’s important to keep an open mind to treatment possibilities. Thank you for reading this and good luck on your journey.

PPS [18 December 2015] ***BREAKING***

Water-only fasting and an exclusively plant foods diet in the management of stage IIIa, low-grade follicular lymphoma: a case note. There are also articles about water fasting to manage follicular lymphoma on the Lymphoma Survival website in the members section.

*Pointing the bone was the ritualistic punishment metered out by the medicine or Kadaitcha man in some Australian Aboriginal communities. The person pointed at would leave their community and go away and die, usually in a matter of days. The only way to overcome the pointing of the bone, is to believe that your own magic is more powerful than the magic of the person pointing it. Google it and have a read. It’s fascinating.

Resources

Here is a post I wrote about what to do if you are diagnosed: Being diagnosed with cancer – what do I do?

Leukaemia Foundation – http://www.leukaemia.org.au

Lymphoma Australia – http://www.lymphoma.org.au

Lymphoma Survival – http://www.lymphomasurvival.com. If you want to get access to the myriad of resources on this site, you will be asked to pay an annual fee of about $35 AUD. At first I baulked but I was then persuaded it was worth it. And it is.  Not only is all the latest science reviewed and broken down into practical tips, there is a community of over 1000 members so you know that you are not experiencing your diagnosis alone.

For general information about cancer and for retreats to learn about diet, meditation and lifestyle generally, go to the Gawler Foundation website at www.gawler.org

Feel free to contact me via the contact page if you want some more information about healing through nutrition and lifestyle. I can’t help you make difficult decisions but I can share what I’ve learned and where to get information.

About Jane Treleaven

Jane Treleaven is a meditation teacher and health coach empowering people to be happy and well through just being, essentially being.

19 comments on “Being diagnosed with follicular lymphoma

  1. Fantastic blog! I was diagnosed with follicular NHL last year at 27 years old. My consultant also said i’d been carrying my alien tumours around for 2 or more years. Wishing you happiness and health – Charlotte xx

    • Oh thanks Charlotte. Yes, it can take quite some time for this stuff to develop. And just as long to go away. Good luck on your journey. I’ll come and check out your blog. Be happy. Be well. Jane x

  2. Hi Jane I’m so thrilled that you’ve come through and are determined to keep on going it shows how strong you are in all aspects relating to your health. You’ve overcome huge hurdles so far and I will be following your continued recovery. Love & prayers Frank O’L

  3. Very interesting story. My father has a b-cell non-Hodgkin lymphomas that raised a lump the size of a small women’s fist on top his head. In his case the cancer was very aggressive and just a couple more week probably would have taken his life.

    After a couple of treatments the doctor of very optimistic that we will see remission. His type of Lymphoma is also curable; however, after taking age, stage of the lymphoma (stage 4), and gender into account she does think a cure is probably not going to happen.

    Thanks for the nice inspirational post.

    • Thanks Elizabeth. Sorry it’s taken so long to reply I hope your father is travelling well. I’m reading a book that has only just been published called “Radical Remissions”. You might like to have a look at it. Miracles are always possible. Be happy. Be well, Jane

  4. Over the past year I have utilised many of youre tips including oil pulling and coconut oil, and looked to you to help learn to love myself, I had no idea you were suffering, or should I say thriving with this experience. Thank you for youre love J. Simone xxxxx

    • Hi Sandy, would love to make contact. Can you send me an email via the contact page on this blog so I have your details and our contact details remain private. Thanks and I look forward to communicating with you. Be happy. Be well. Jane.

  5. Jane,
    you are pure inspiration.
    your commitment to becoming your best self- whole- body, mind, spirit is truly an outstanding gift and a reminder for us all. thank you for being you and sharing so authentically. may your journey continue to be deeply blessed.
    ~g

  6. Dear Jane: Love your ‘vulnerability’ and your openness …. this year has been one of incredible change for you and I say “bravo” for the courage to make such changes……I’m sure you will find your way in the ‘work’ department – do what you love and love what you do! If I can be of any support, don’t hesitate to call on me……I just want to see you well and happy. Lots of love, Aunty Judy

  7. Thank you for being open and raw. This is a very inspirational story not only for those dealing with fNHL but also for those that need positive outlook while going thru a challenging period of right.

    Keep writing I love your energy!

    Thank you.

Comments welcome