Thursday, 31 October 2013

Decisions, Aspirations, Aspartame and Immunology

Surgical Decision Made

I’ll start with the most important part. We had the meeting with my oncologist two days ago to discuss where to go for a third opinion. The end result is we are getting referred to the National Hospital for Neurology and Neurosurgery which is based at Queens Square London. It has the best technology in terms of imaging and surgical equipment such as intra-operative MRI and probably the most experienced surgeons. However, with this obviously comes longer waiting times. Fair compromise I think. It should be giving me the best chance anyway. This means another multi-disciplinary-team meeting and starting the whole process from scratch for the third time but hopefully it’s worth it, it’s certainly the final time this time.

In the mean time: its my parents anniversary and we went for a meal out to celebrate. also following the theme of this blog i  made another cake. i didn't eat it though. oh, and i feel so much better since coming off of the steroids that i've started light weightlifting again. so everything is positive at the moment. except for rene starting work and being 5 hours away all the time now. but i'm happy she has a job and starting her life properly now. 
Dad probably checking out another woman in the distance

Choc + Coconut Cake
Chocolate + Coconut Layer Cake

Aspirations/ Goals

Loads of people have told me to make a bucket list. I was going to wait till after surgery and assess how well I am and make one based on that, but life quickly becomes depressing without anything to work towards. The mind needs a purpose or what’s the point? This isn’t really a bucket list; that can wait. This is quite a safe and boring list to keep me busy and my mind active till I’m free to go back to living a normal life again.

1.       Beat the average Prognosis.
As this particular cancer is incurable I can’t say my aspiration is to beat it, as much I’d like too. But I can still set myself a goal. If it’s diagnosed as grade 2 after surgery my goal is to do everything in my power to beat the median prognosis for grade 2 which is 6 years. If it is grade 3 I want to beat its median prognosis of 18 months. There is enough research out there about optimizing your cancer prognosis for me to have something to work on to put myself in the 50% that survives longer. This is a difficult one because all tumours are different and it’s mostly out of my control. Also the prognosis gets worse for patients with tumours of my size but from reading other blogs, the people who survive the longest are those that dedicate their everything, to fighting it in any way they can. Diet, Exercise, Psychology, Drugs, Constant Research, Faith. That should give me something to do.

2.       Finish University.
I’ve been at university for 5 years, I’ve never failed a year and yet for medical reasons I’m still 9 months from graduating. I’m sitting on a 2:1 and the hardest bit is done so I’m in little danger of failing but I only have till September 2015 to finish or my time is up. Now if surgery goes well (i.e. I’m not paralysed) and I recover my mobility and cognition enough to continue and its low grade I can go back to university and finish without too many challenges, hopefully. The trouble is you need to be in good health to work in healthcare, you can’t be a danger to patients.  This is quite an optimistic aspiration, maybe more so than the first, but it’s just as important to me.

3.       Get Married
If the situation is right at any time in the future this is a must. I don’t think it needs an explanation. But the situation needs to be right to get this one to work.

4.       Aurora Borealis
I’ve always had a fascination with Norway, it’s beautiful. It’s so close and yet I’ve never been. I want to go to Norway and see the Northern Lights before I go. It’s just something I have always wanted to do. This one is mostly finance dependant I suppose.

5.       Take Care of My Other Organs
With some luck I have quite a few years left yet. However, even if I made it into my thirties, I should be healthy other than my brain. I don’t think Gliomas spread outside of the central nervous system. So technically I should have the organs of a healthy young male. Not sure if you’ve watched the movie seven pounds but it’s always made me cry. So the goal here is to keep as healthy as I can in order to be recycled and hopefully save someone. This target involves not drinking or smoking and eating healthy, exercising as much as my body will let me. I need to lose some weight, especially the weight I gained on steroids and then hope any chemotherapy doesn’t damage my organs too much.

6.       Be a Lab Rat
Bit of a strange one perhaps, probably comes from the fact that I’ve always loved science. And for most of my time at school I wanted to be involved in the sciences. Turns out I find labs extremely boring unfortunately and preferred the job security and social interaction of healthcare. However there is still a lot of research that goes on in healthcare that I wanted to lead my career towards. Now if I can’t do this from a researcher’s perspective I want to be involved as a subject. This will probably involve being part of a clinical trial for a new drug or something. I’m already trying to get signed up for a cancer research trial into the genetic causes of brain tumours that’s occurring right now. So maybe this one will be the first to get crossed out.

7.       See More Live Music
I lived in Cardiff for 3 years and every year some of my favourite artists/bands come and I put off seeing them due to my health reasons. I’m not very good with crowded places with limited toilets. I always thought there is plenty of time to see them in the future when I’m in better health. This is one for when I return to uni.

8.       Go back to South America and visit Venice
I’m in huge debt from university so probably unlikely to happen but these are two things I’d love to do after treatment if my health allows me too. Argentina is amazing. I’ve never been to Venice and that has to change, it’s just the city I really want too see.

9.       Website
With all my health problems I’ve always had web-design as a back-up plan and I learnt some HTML but never really had any ideas to practice on. Now I have some ideas but forgotten all the HTML. Anyway this one is for the present. I need to learn my html again, do a load of research, and put together some decent content.

Why I think I have Cancer

Cancer is an epidemic in the western world. 1 in 3 people currently get it and supposedly 1 in every 2 people will get it in my generation. Compare this to Syria for example where the rate of cancer is 70/100,000, or Botswana in the 80/100,000 range compared to our 33,000/100,000. Obviously you have to look at these numbers objectively, these are the extremes. But research suggests that you are 4-6 times more likely to get cancer in the western developed world than in the eastern developed world. However, this is being proven not to be genetic because Asian communities living in the western world have the same cancer statistics as their host country. So it’s environmental. Our diet and our pollution and our lack of exercise is the primary cause of most cancers, or at least a large contributing factor.

That’s all interesting but I’m looking into why I got it so early. I have two opinions. Firstly aspartame has been directly linked to brain tumours in rats, also brain tumour rates have supposedly increased by 250% since the release of aspartame, I couldn’t find the source for this though, I just read it on a few sites. From the age of 16 to 22 I pretty much just drank sugar free soft drinks with aspartame as the sweetner. I had at least 2 litres a day. Far more than normal levels, so maybe this is the culprit. Funnily enough it was my IBS that stopped me from drinking it. I realised that my IBS significantly improved if I switched out aspartame for alternatives. Now aspartame has been linked to plenty of other neurological conditions as well, it is effectively a poison. I can’t prove it gave me a tumour, I can’t personally prove its bad for anyone, but I urge you to do some aspartame research for yourselves and then stop or continue using products with aspartame in based on your own opinion.

The other reason is immunology. Everyone has cancer all the time, our body’s immune system is designed to fight it and keep it in check, its only when our immune system fails to destroy it does the cancer reach problem levels/ diagnostically measurable levels such as growth of a tumour. The reason we are more likely to get cancer as we age is our immune system naturally weakens. Cancer rates are higher in immunosuppressed people such as those with HIV. I was an extremely healthy child who rarely got ill. However, after getting IBS and losing the ability to digest foods efficiently I got ill all the time. I seem to catch every bug and cold that’s going around. so my immune system is likely a bit weaker than most. Eating better and taking loads of probiotics to try and fix my stomach is hopefully going to have some impact on this, and hopefully slow down the growth of my tumour. But who knows? Maybe this was just one massive coincidence or I was genetically determined to get it. But I feel like my lifestyle choices are the most likely explanation on this one.