So as most of you know surgery means they removed 95% (approx) of the tumour but the bit that makes it incurable is that it is intrinsic (made up of my brain) and being a mixed glioma- Oligoastrocytoma (is the official name) the blinking Astrocyte cells make this thing
(Image courtesy of abta.org) Anyhows my latest scan showed that there has been some movement. The "bit that's left" in my Neuro Oncologist's words, has "bulked up a bit"...he's on the move but we won't know just how much until my next MRI scan in July/August time. Now this is why I thought well he's not so big that he justifies Grape status so we'll just call him the Grain currently! They are not so worried that they want to move me to 3 monthly MRI scans, they also need to allow 6 months to fully check how much growth (fingers crossed for none or minimal) that there has been. At my next MRI scan I will also have an extra fancy profusion scan (this looks for blood uptake to the tumour site) to see how the residual tumour is responding. If the blood uptake is high then that's not so great as it potentially means he's going to grow back quicker, if it's slow uptake then that's good because it means he's still only slowly, lazily, plodding along! I keep thinking of this tumour like that bit in Home Alone...
If he is really serious about coming back I'll just have to step up the regime again and go from there. I'm currently trying a modified Atkins diet (high good fats and low carbs) as it has shown some positive impacts for people with brain tumours and in the treatment of epilepsy too. I felt a little sluggish to begin with as your body goes from living on those carbs (sugars) to converting your body's fat stores (of which I have plenty!) into energy. I am doing this in conjunction with as many visits to the gym as I can manage and/or walks with the hubs. Don't get me wrong, I am human, I have had some real highs and lows with this food thing, but this time I just feel it's got to be done. We've basically realised that no matter what diet I adopt the IBS never ends so I just throw caution to the wind and as the book says "feel the fear and do it anyway!" I am also still on the Care Oncology Clinic protocol with the next review scheduled for after I have been back for my next MRI scan.
Some people (not close friends/family etc may I add) have asked me recently if I knew that he would return, the answer to this is yes, and I don't expect others who do not know me well to understand this as pre diagnosis I wouldn't have necessarily understood that part, but basically the "it's incurable" bit of the diagnosis means that's what we can currently anticipate to happen. But all the science in the world cannot tell you who, what, why, where and when (at the moment...) because we are all so different, and because our bodies are so different and because our tumour types are so different. I only currently know the information about my tumour and prognosis but as I've said before, and as I'll say again, the statistics are just that and nobody really knows what will happen. It's a bit of a frustrating waiting game at times, but you just gotta live each day as it comes, enjoy things to the max and make the most of what you have got.
I know currently I have a good overall quality of life, albeit tinged with shitty parts from time to time but in the main, in the here and now I have so much to look forward to and to live for, that keeps me motivated most of the time. Where my tumour sits he's right in the "thinking, comprehension and emotions" epicentre and that means sometimes we just don't know if what I am experiencing is "tumour stuff" or just plain life and life's feelings. I have had some really good days, good days and then at the other end of the spectrum bad days and sadness. I remember when I was seen after the craniotomy that they said there will be no middle anymore, that life would be filled with "epic highs and massive lows" I wish I did know at times why but as I say the fighter side of me knows that there is no point in wasting the time you have got worrying about those things because 9 times out of 10 the questions are still unanswered and not necessary to worry about in the here and now because whilst we worry we're missing the good stuff and the bits that make life wonderful (must remember to read this again on the tougher days!)
I hope in the years to come we will have all the answers! Another reason why events such as Brain Tumour Charity's https://www.thebraintumourcharity.org "Bandanas for Brain Tumours" day is such an important day for me. Every fibre in my body truly wishes that one day these blasted things will be something of the past, or we will have invented better treatments, which downgrade some of the severe symptoms and problems that people with brain tumours face.
I know some of my expressions above might seem bonkers, but for me living in this brain tumour world, that's how I like to make sense of it all and it also takes the edge off. I know deep down how serious all of this is but I am determined to make light of the bad stuff and still try and aim for a happy and positive outlook. Compared to some of my friends on this journey who are going through utter hell right now, I know that this news is still on that better end of the spectrum, difficult news nonetheless, but we keep, keeping on!
All the love,
Gem Xx
