The good moments get better and an anti-cancer diet?

Okay, so were a month post diagnosis now.This blog update isn’t really about any treatment updates other than my own implementations and some drug changes as there really is nothing to talk about with regards to that until next week when I see some surgeons. It’s just more going to be a general update with some pictures to brighten this sad space up a bit!

Dealing with five medical conditions means a lot of pills

This is my current breakfast concoction for my IBS, Tumour, Epilepsy, Arrythmia and Anxiety excluding the two fish oils. Cutting back on the steroids has been amazing, I’m starting to feel a bit more mobile again and my tummy is getting a bit better also. My physiotherapy seemed easier; I only failed on one of the tasks. Increasing the keppra dosage has had an effect on my irritability and makes me very tired sometimes along with a few other unpleasant side effects but I remain seizure free for four weeks now so it’s worth sticking with for the time being. The epilepsy community seem to have named the anger effect ‘kepprage’. I lowered my dose of steroids for the last time today so I am now on 4mg per day rather than 16mg, which is a pretty huge change and meant I was feeling well enough yesterday for Rene’s birthday to actually have a good day and go out for a meal. Also, I haven’t needed any pain killers in five maybe six days.

Rene’s Birthday 

If being hit with the cancer diagnosis has any positives other than free prescriptions it’s definitely a new perspective on the good and the bad. When you’re having a good moment it’s hard not to appreciate it for everything it’s worth. Having a distraction from my thoughts and research was really nice. Choosing presents and making cakes and cooking breakfast and going out for a meal was probably a lot more fun for me than it was for her as she strongly dislikes the attention of a birthday but I think we both enjoyed the distraction and it was really nice to get out of the house for a bit and have a good time. Also she liked all her presents! The joys of having an easy to please girlfriend J

Rene with her dessert at austells
homemade hello kitty cake
The hello kitty I made for her because she has such awful taste for a 22 year old.
pistachio cake
The slightly more adult pistachio flour and chocolate gananche cake I made to make up for the shame of making something with hello kitty on it. was very nice!

Me with my slight steroid moon face and longer beard than normal because shaving/trimming really hurts when you’re on steroids and your skin is as dry as cracked as the sahara. Had very tasty hake though! Don’t google image search hake. Not a pretty fish!

Research – Taking some control back

Due to my anxiety issues my initial thoughts on how best to cope was ‘ignorance is bliss’. If I don’t read any more I can’t scare myself anymore right? I sucked hard at this tactic. The  feeling of having no control over anything is a pretty sad place to be, especially when the drugs you’ve been put on seem to make you feel worse so fast! All I wanted to do was binge eat and let it crash. Steroid hunger is quite something.

I have an interesting, fairly rare cancer, I have a science background, I was about to do my 3rd year dissertation anyway, why not do some research and gain some control back. I decided I wanted to know what’s going to happen to me and I want to know what I can do to give myself the best chances. Being a bit more proactive can’t hurt surely? Obviously a lot of the stuff I read scares me, but other stuff is full of hope and good information.

I started off initially with just some books from amazon and recommended reading lists and then read as many blogs as I could find, some of which were really interesting and full of non-conventional trial treatments I’d never heard of previously.

like a hole in the head
living with a brain tumour

Of all the books I’ve read so far I think I enjoyed the anti-cancer one the most. It’s mostly about western diets being the cause of a lot of cancer and some positive thinking stuff, but it has a lot of well referenced research about nutrition and the key point I’m taking away from it is a low sugar diet can potentially improve prognosis for cancer patients because of the rate at which tumours can metabolize sugars towards growth.

Which I suppose is stuff I already knew because we use glucose as a tracer to find cancers in PET scanning, but giving up sugar is hard! Especially if you like cake as much as me!! But I suppose now that I do have cancer and I know limiting my sugar may I have a positive relation to my prognosis it’s worth a try. So here’s to a refined sugar elimination diet. And whilst I have thoroughly enjoyed all the chocolate and sweets everyone has bought me in the last 3 weeks, (I really have). I will be doing my upmost to not be eating it anymore. I’m also going to be introducing the following supplements for various reasons too my daily regimen; probiotic, selenium, vit e, turmeric, omega 3s, green tea and vitamin b6 which supposedly can help counter the kepprage!

But yeah, it’s a great read for anyone interested, well worth the money or you can borrow mine. Obviously all the research cited is in favour of his opinions and he doesn’t include any counter research, but then it’s a mass marketed book rather than a study. It’s certainly made me feel like there is nutritional and psychological things I can be doing to give myself the best chances and any part of this process in which you can impart your own control is extremely important because it feels like we have no control over anything else that’s happening.

I do see the irony how this particular blog post went from a blog about cake to a blog about how I’m trying to cut out sugar! I didn’t say I was good at this…

I’ve also been picking up research and information on new treatments from other blogs and then filing through all the databases for recent trials and such. Obviously surgery is the primary treatment and always will be, followed by the conventional radiotherapy and chemotherapy when needed but there is a few interesting treatments out there such as the Newcastle disease virus and this scorpion venom chlorotoxin thing that could be something to consider in the future.

I’m leaving a few links here of good blogs and research for my own usage really. Keeping tabs.
This weeks reading:

Big decisions next week

Anyway, I’m in relatively high spirits at the moment. Cooked up a huge 5 hour roast shoulder of lamb for the family and Helena yesterday and baking some low GI bread today for my new diet. Going to Swansea early next week for Rene’s parents to meet mine because it’s about time and then going straight onto my Cardiff neurosurgery appointment and clearing out my Cardiff bedroom in order to try and rent it out to someone else which will be very sad times! Going to miss Cardiff a lot. So till then. Have a good weekend all J


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