A physical wreck's guide to juggling emotions

I may have touched on this before, but the fact is, like so many adverse events in a person's lifetime, it's hard to know how to behave when you are dealing with a brqin tumour. Often your emotions don't always play fair, by falling in with friends/society's ideas of "how you should feel", and you find yourself torn between how you "should feel", "the way you actually do feel", "the way you act in front of others" and the way you deal with the situation that makes the most sense to you... Over the last ten years, dealing with a near fatal accident and two brain tumours, I think I've become a near-expert in my emotional well being and my way of dealing with adversity. So I thought I'd share with you the range of emotions someone in my situation may have, and why they are ALL valid as coping mechanisms and essential in retaining a sense of self as a person, not just a "sufferer". 1) Confusion: I think confusion is understandable in any situation for which there is no valid reason or preparation for. Back in 2001, after days/weeks (never entirely sure) of subconciousness following my accident, I came round to find my entire body smashed, and my pelvis only kept together by some strange mechanical looking metal structure, confusion, along with horror and disbelief were pretty much the order of the day, as I struggled to understand why this had happened, and why I could no longer do so many things I took for granted. Being diagnosed with a BT is no less confusing, but the confusion doesn't begin and end with the diagnosis. When I had my first tumour back in 2006, I deperately tried to understand why this has happened and what all the jargon meant. Six years later, and countless reading and google serches later, and the jargon is less confusing; I know what and where my temporal lobe is, I know what anaplastic means, I understand the WHO system for grading brain tumours and I understand some of the effects tumours can have on the body. But I still have moments of confusion,especially recently trying to understand how chemotherapy can start to work and can then just as easily stop working, whether or not I should have been on a different treatment to begin with, why some symptoms have gone, yet others have returned... the scope for confusion seems to be ongoing... 2)Anger: I feel that being angry is probably one of my most frequent emotions. Whilst I refuse (or at least try my best) not to take my anger out on other people. I do often (and stupidly might I add!) get angry at myself, or more acurately at the limitations of my body. I get angry at not being able to move quickly, or being able to do much without exhaustion setting in. I

I also get very angry at the tumour itself; how dare these cancer cells invade my brain and keep growing?!! I'm not usually violent, but I want to strangle them and kill them off! 3) stubborness Stubborness (sometimes confused with determination) has saved my life. Anyone who truely knows me- just ask my parents- knows that I have a stubborn streak a mile wide, inherited from both my dad and my late maternal grandfather. I have rarely done anything unless I've wanted do, I refuse to back down from arguments, and I refuse to let anyone tell me what I can and can't do. The evidence speaks for itself

When I had my accident they told me I probably wouldn't be able to use my right arm (radial nerve damage) for a few weeks. Within days I'd practised until I was able to hold a book, pour a drink and change channels on the TV and radio. I was then told I couldn't start standing and walking for twelve weeks, I started putting weight through my legs at 9 weeks, and got my pelvic fixator removed a week early at 11 weeks. I followed this through when I left the hospital and started attending twice weekly physio and hydrotherapy sessions. If they told me 5 minutes would be enough, I pushed myslef to do 10. I hated using a zimmer frame, so I made myself practice using crutches. And being stubborn worked. Against all odds I was back at uni withina year (all be it on crutches) and lived as independently as possible. NB back packs save a lot of hassle when shopping on crutches! I suppose my stubborness has been just as present through cancer. The first tumour was a lot easier to deal with. Following my brain surgery, I went to uni (I was now doing a PGCE) about a week later, completed my three day extra placement at a special school whilst waiting to start radiotherapy, and then returned to complete the course the following September making time for some trips to Budapest and Tanzania as well. MY stubborness means that I refuse to let anyone fuss over me, If I want to do something, but others question my health and whether it's "sensible", I dig my heels in which explains why in the last six years I've travelled further and more extensively than ever before, and even chosen a career which generally means packing up and moving on to different parts of the globe! This second time round, it is at time harder to keep my resolve, but you know what? Cancer's already taken a lot from me, I'm damn determined not to let it control my whole life and future! 4) scared seriously who with cancer wouldn't feel scared?? Not only is there the frequent media hype of the seriousness of it all, but there are the blind facts. Cancer is life threatening and people DO die every year from cancer related illnesses. Just the thought of my brain being host to such a vile disease is scary, and as much as I try my best not to dwell on it, the threat of death is always there like a dark secret that nobody wants to talk about. However, thankfully there are lots of distractions in a day, and what with not worrrying your loved ones too much, there are simply more productive things to do than live in fear all day long. 5)forgiveness/understanding one of the things I often get irritated by (as I've mentioned before) is the way people treat me differenty because I'm ill. They talk in a soothing voice, tell me I'm an "inspiration"and generally make out I'm some kind of saint because I had the misfortune to get ill. Perhaps one of the niccer aspects of my personality through adversity is my constant effort to be forgiving and understaanding. I know that none of these people mean any harm, and they just don't know what to say, so I let things go, take a deep breath and try not to get visably frustrated with them, most people have good hearts.. 6)positivity:

"being positive" seems to be number one on the friends and family's "how you shoud be" list. The phrase kind of grates a little with me particularly as sometimes (sorry to alarm you) but no amount of positive thinking makes a damn difference!! That's not to say I don't try, but when you've already had six vomit inducing cycles of chemotherapy to only be told it's not worked it's rather difficult to grin inanely at your oncologist and say "nevermind, I'm sure the next treatment will work!" . this is because, unfortunately, there are NO certainties when ir comes to dealing with briain tumours. I am a realist (please don't confuse it with negqtivity- see next emotion!), this means that when things are genuinely going well, I am positive. When I found myself walking unaided for the first time in over a year I was almost bouncing off the walls in exdcitement, however because I KNOW I will always have a limp I don't waste time hoping by some miracle it will get better; I just accept things the way are. For each treatment I am given I start by thinking this may work but never get my hopes up thaat it definitely will. 7) negativity I have been accused by some of being too negative, whilst being applauded by other friends for being realistic and preparing myself (and them) for the worst. When you have certain facts at your disposal such as (dreaded) statistics, and previous experience, it's only natural that you prepare yourself for the posible bad outcomes as well as the good. That said I refuse to give in to extreme negativity. Deciding you definitely won't survive, seems to me just as stupid as saying you definitely will- you have no proof for either outcome, and all you're doing is being self-pitying and depressing people around you- get over yourself! 8)calm: Calmness, believe it or not is my most common feeling when I speak with my oncologist at the hospital, and when I talk to others about my condition. Often DR R has had to tell me less than pleasant things, but I can honestly say that I never feel like wailing in his office or feel particularly anxious. This is mostly because he is a fantastic doctor, who Ihave known and trusted for nearly four years. Any anxiety is usually prevented by his directness and explantions which make each new development clearer and understood. I am also calm when discussing things with friends and family. If I were to break down in tears everytime somehing bad happened, I'd never tell them anything, and they'd be left in the dark, by staying calm it ensures they, too react, calmly and are able to listen and take everything fully on board. 9)happiness:although the concept of being "happy" with cancer may surprise some, this is actually the most important emotion/trait of all. Despite, what many may believe, I am not sad that often (I can count on one hand the number of times I've actually cried in the last year!), I constantly find things to smile about- spending time with the people I love, talking to friends' children, sitting in the garden on a sunny day etc. And I laugh. A lot. Because if you lose your sense of humour, you truely are done for. Admittedly my humour has got quite dark, I make a lot of jokes about being one of the "cancer crew" that some may find distasteful. To laugh is, fo me a huge part of what makes me human, if I stop laughing, I am more likely to go down some bleak depressive spiral of bitterness and self-pity. And, believe it or not, I have a lot to be happy about. I have two months of chemo, so get some time off vomiting and feeling rundown. I live in a beautiful part of the world, currently even more beautiful now we have some SUN, I am alive, which ten years/6 years/7 months ago wasn't guaranteed, I have a wonderful family and fantastic friends, I have a wealth of travelling memories and (hopefully) the potential to create some more, I have my books, I have my writing, I have a loyal and friendly dog, and most importantly I can look in the mirror and see not only a real human being (rather than a fake), but a person I actually like and respect.