September: Lymphoma Awareness Month

So September is Lymphoma Awareness month (amongst all of the other awareness campaigns we are meant to keep track of nowadays – it’s exhausting am I right?). But this week specifically is THE week we Lymphoma types are meant to twist and shout and spread the word, and I’ve been remiss so far -so here I go!

I think the reason why I hesitate to talk about it much nowadays is because it is something we are told to move on from, almost from the moment we are diagnosed we are encouraged to focus on the future, on the remission, on the time when cancer is no longer affecting us. Sorry – for anyone new to the blog, I should say that I am  12 years in remission from Non-Hodgkins Lymphoma.

Which means I have been in remission/considered cured for a long enough time now that it should be a fading memory. Of course that’s not quite how life works, I think most cancer survivors/former patients would maybe agree with me. The truth is that during treatment your life is a blur, a series of shocks and feeling rubbish and being very afraid you are near death, and it’s all happening at once – so that in my case anyway, it wasn’t until several months after treatment finished that I even remotely began to be able to process it.

I was talking to a new friend the other day and she asked me something that I don’t know if anyone has ever asked me before – How did I come to terms with it? (in the aftermath). And the truth is, I didn’t do many of the things that most cancer patients do to feel empowered/as victors in what society insists on labelling “a battle”. I didn’t run a race or do a fundraiser or set myself up as some sort of cancer "hero" because frankly, that idea horrified me. Also, I was freaking tired!

I wrote, which helped, a lot, and I just took each day as it came. I did not seek therapy for two reasons: 

1. Lymphoma is still a rare enough form of cancer that the survivor/support groups around me also included family members, looking for grief support, a whole other bag of emotions I wasn’t prepared to think about – maybe selfishly, but truthfully the survivor’s guilt is a real thing, and it wasn’t something I wanted to invite more of into my life. 

2. One on one therapy, which I could have had, for free, at my local cancer charity, but again, I just didn’t see how it would help. They couldn’t promise my cancer wouldn’t come back or take away or truly understand any of what I had been through. Which was maybe wrong-headed of me, but I had an experience there during treatment where a volunteer whose husband had died of cancer cornered me and unloaded HER cancer experience onto me, someone right in the middle of it. And sorry, but it just didn’t help me at all – I’m very sorry for anyone who has been through that, but it’s not my experience.

So in typical me form I do think I have been a bit isolationist in dealing with it. But in truth, that is something that most cancer patients know to be true from the moment of diagnosis – you are alone in this fight – yes, you may have the support of loved ones, but you alone must find a way to get through it and take your medicine even when it is the last thing you want to do.

I think I have also shirked a bit from the survivor brother and sisterhood because I don’t really love the whole “We are the victorious people!” vibe, because I do think that it is kind of insensitive. Yes, go us, we went through very difficult times to be in remission, but it’s the luck of the draw frankly – far nobler and better people than I have succumbed to this horrible disease, and I guess some part of me feels like if we continuously put forth survivors as victors and people who die as having “lost a battle” it just re-enforces many misconceptions about this disease to society as a whole. 

Good, strong, smart, valiant people die from cancer every damn day. Is that something fun to think about? No, but if we continually gloss over it I think cancer begins to seem, to those who haven’t experienced it, somehow less vitally important, less like something that needs to be our number one priority in finding a cure.

Those of us who “survived” are not special, or stronger, or better, than those who didn’t. We are just damn lucky is all (by the way the Salon columnist and author Mary Beth Williams has written numerous eloquent pieces on this very subject, including her memoir which I need to get my grubby paws on stat!). I hope I haven’t subconsciously thieved (much!) from her because I read her writing about cancer often, because she is an inspiring truth teller on this subject, which is rare.

And for me, personally, more times than I can count I have been asked what "caused" my cancer. The secret implication being I must have had some fault, some history or unhealthy behaviour or SOMETHING, because the mere fact that a (non-smoking, vegetarian for much of my early life) healthy 28 year old woman can get a cancer that kills half of everyone who gets it is freaking terrifying...I must have done something to deserve it, to manifest it, because we humans are like totally in control of cancer with our energy and toxins and blueberries and blah blah blah (Yeah don't get me started on that stuff either! ;-0).

There is in fact, no cause, not for my sub-type*, no known cause for most types of Lymphoma in fact. Which, for a disease that is on the increase, should be paid more attention to, and fought and campaigned harder for, because unlike more high profile cancer campaigns (Breast Cancer, for one), our survival statistics are not so hot. Lymphoma can strike the very young, the very old, male or female, it does not discriminate. In short, it can happen to absolutely anyone, and I’m sorry if that’s scary, but maybe we need to wake up and start fighting for more targeted  cancer research, because unfortunately it’s not going anywhere.

“Over the last decade, non-Hodgkin lymphoma incidence rates have increased by almost a fifth (18%) in the UK, with a similar increase in males (18%) and females (17%). Most NHL cases are diagnosed at a late stage. 1 in 48 men and 1 in 58 women will be diagnosed with NHL (all subtypes combined) during their lifetime.” – Cancer Research U.K.

Education is key, especially in getting diagnosed. I fought an almost three month long battle to be taken seriously despite very visible symptoms of swelling in my upper torso, a common symptom of my admittedly less common form of NHL. It took me going into a g.p.’s office and pitching a (genuine) hysterical fit after two months of being fobbed off, and while of course I am grateful for the excellent care I eventually received, no one should have to go through that to get a diagnosis, and it is still happening to younger patients especially. It’s simply not good enough.

(gets off soap box….)

Sorry, I always get passionate when I talk about this, which is maybe why I don’t do it as often as I should, because it’s honestly frustrating as hell that we are not doing much better now than we were 12 years ago when it comes to this stuff.

So yes, I do think awareness of Lymphoma is important, for ALL of us. We all need to be a little bit better informed about our bodies and unusual symptoms, and not be afraid of demanding answers if we are being given the brush off, because it might be a matter of life or death, and that is not something we can afford to leave to chance. 

Maybe I should sugar coat that a bit more, but take it from one who knows, it's not something you ever want to get the better of you. Both the ill and the non-ill need to be better at being aggressive and pro-active about our health, especially in the U.K., where the NHS is being marginalized and beaten down by the current and recent administrations, we need to stand up for it and for ourselves if we ever want things to get better.

More information on Lymphoma can be found at lymphoma.org 

*Part of this year's awareness campaign is focusing on Lymphoma patients sharing their sub-types, because there are so many, and many of us are a bit confused about what they mean. I didn't want to go into too much detail about mine as this post is already long enough!