Today (March 31st) is the last day of Brain Tumour Awareness month, so I thought I'd talk a little about why the groups and forums that raise awareness are so important to me and many other Brain tumour sufferers/survivors/patient supporters.
As with every day this month, I have been sharing (on Facebook), the daily "Did you know" facts posted by BT buddies, the UK based support charity that I am raising money for. Today's quote fits in perfectly with my own views of knowing others who have had /or still have brain tumours:
"Those of us fighting the brain tumour beast are a band of brothers and sisters. None of us want to be on this journey, but we are, and so we fight, side by side, helping eah other with love, information and support." (Dr Michael Gabriel)
For me, opportunity to communicate with others in the same or similar situation, to yourself, is an important way of coming to terms with the illness, and in getting through it.
The hospital in which I am treated (The Norfolk and Norwich) is home to the local charity, The Big C, and offers many groups for people with cancer, including a Brain tumour group, but there is a problem. Norwich is a 25 mile trip from my home in Mundesley, and the hospital is further still, meaning I only tend to go there for my hospital appointments, which are all on Fridays. The group meets on a Thursday. Therefore if I wanted to go to this group, I'd have to go purely for that, and frankly (not wanting to sound too harsh), I have better things to do with my time- bear in mind people with brain tumours cant drive by law, so most people rely on lifts to get there.
This is one of the reasons why intenet forums and websites are so necessary and useful. When I was diagnosed with tumour number 1 in 2006, I was clueless. Like most people my only knowledge was what I'd read or seen on the news, which compared to a lot of cancers (eg breast, lung, leukemia etc) was limited. So I searched the internet to find sites. There are plenty of general cancer sites, but again, comparitively fewer specifically for brain tumours. Whilst general cancer sites are great for gathering basic information, I think a lot of cancer sufferers (myself included) prefer talking to people with a similar type of cancer, as your experiences are more likely to be similar. I think this is especially true for brain tumours, particularly as out of the many types of cancer, brain tumours seem shrouded in mystery and uncertainty. When first diagnosed, the only websites I initially found seemed more concerned with statistics, which as I've said before do little to raise the spirits, as they are far from positive for brain cancer.
So I started to speak to people on more general cancer sites such as Cancer Research and Macmillan. I was pointed towards some Brain TUmour sites, but the majority were AMerican. I have no problem with this, I've actually made some good brin tumour forum friends on the other side of the pond, the problem comes when asking for advice. Treatment used in the USA can vary to that available in the UK and vice versa. Which is why I was pleased when I stumbled across BT buddies.
BT Buddies is one of the only UK websites dedicated to providing information and support for people with brain tumours and their friends and family. Through them I found a lifeline, although I have never yet found anyone online with my particular type of tumour (Anaplastic Ganglioglioma) which just goes to show what a rare type it is.
BY taalking to others in a similar postion, you can be completely honest without fear of "freaking people out".
You see this is one problem with your everyday healthy friends. As much as I love you all, it is impossible for someone who has never had (or known anyone with) a brain tumour, to even to begin to understand what you are going through (although I hope this blog has helped over the last few months)
For example when I started having symptoms of my recurrence in October when I returned from Taiwan, I KNEW what was wrong, the diagnosis was just confirmation, yet (healthy) friends have this understandable desire to keep you positive, by saying things like "Oh it could be something else", "You're probably tired "etc. I contacted a friend I'd made online, who had a BT 3 years ago and they just said "Shit, but yeah,does seem likely- so has a MRI been booked?"
This is the kind of support I needed, someone who accepted (as I had) that in all likelihood, it was the worst case scenario, but could understand it and was willing to open up chanels of communication.
I don't pretend to react to things the same as ALL people with brain tumours. However I think a lot of us through weighing up all posibilities become a lot more open to talking about mortality and the likelihood of ongoing recurrences. Most people, again- understandably- don't like talking or even thinking about these things. I know I can be unfair to people who feel awkward, but sometimes I need to be really honest about these things without upsetting people, and forums are the one place I can do this, I regularly read the motivational stories of long time survivors whih are fantastic. But the other, very real side of the coin is that many, simply, do not make it. I am grateful that there are places where I can voice these concerns without upsetting loved ones.
I also get a reaal comfort from helping others, particularly those at the beginning of this journey, and those supporting people who are. It's nice to have the opportunity to get something positive out of your situation by helping others.
This is the reason I started this blog alongside raising money for BT buddies, I wanted to carry on what they have started; giving honest and open information about the life of a brain cancer patient, alongside hopefully helping people deal with it in the first place.
So please, please, please if you haven't done so already, donate what you can to BT buddies via my just giving page: http://www.justgiving.com/Lucy-Cunnington0
And to all the websites/ forums that continue to keep me motivated and give me hope, Thank you.
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