On Tuesday I had a long day of appointments up at the hospital in London- NHNN. Here's how it all went:
It started with an MRI scan with contrast- this all went as well as could be as I have to admit I was a tad anxious due to the fact that I've always either been semi unconscious when I've had contrast or I've already had a cannula in my hand e.g post op so I was curious as to how it is administered- I think I'm a control freak and just wanted to know how everything works- some may find that bizarre but being such a needle scardeycat I like to at least know (and if anyone is reading this and is worried I'm hoping this will reassure you) Essentially all that happened was similar to having your bloods taken in that crook of your arm so nothing massive being placed in my hand as my over active mind was dreaming up! All very simple, straight forward and no discomfort.
Once I was ready to go on the scanner they laid me down and tried to put the contrast in- now we weren't sure if the vein had collapsed or what was happening but they had to go with this a few times as it wasn't going in (I think my vein was just thinking "Sod off with that!") anyways it did eventually go in and away we went! All in all it was so quick this time but before I went in the lovely nurse said that I would be "10 minutes" maximum but because of some delays with the person in front of me and then the above contrast issues, I ended up being in there for over an hour- hence when I came out of the imaging centre and back into the reception my Mum and Carl were nearly having kittens wondering where I had been (See, it's not just me who has the over active imagination!)
After a lunch break it was time to see my new Neuropsychologist. I wasn't at all worried about this in fact I thought it was a great service to be offered and I was keen to talk through some of my fears and anxieties which I think a lot of patients can relate to post diagnosis. The appointment went really well and I would recommend this type of service to anyone who feels they need to talk things through with someone. Now because I don't live in London it may be the case that I need to access services a little closer to me but the Neuropsychologist was very lovely and said that he would be happy to see me when I am in London for other appointments or to get in contact. I appreciate that not all hospitals will offer this service so it may be worth speaking to a GP to see if you have anything within your local area that you can access or if you have one speak with the Clinical Nurse Specialist (CNS) who may be able to advocate with your GP to advise them about supporting you - I know for example where I am in the Berkshire area that Talking Therapies is our local NHS service who offer CBT style counselling and additional services.
So the main appointment of the day was the one with my Neurologist at 4:30pm. We started off just talking about how I am feeling and how everything is going. I was then waiting to hear about a couple of things but unfortunately my scans from the day were not available to him even though we thought they would be- I of course became a bit distressed by this but he was very reassuring and said firstly he felt that there would be no changes but also that these newer scans are really now giving my new 'baseline' and it will be the next scan which I will have in another 6 months (October time) that will tell him if there are any changes etc, however he feels because I have had a maximal resection that it is unlikely anything will have happened this quickly, so I still felt a little frustrated not to be able to see anything in black and white but also reassured.
The next part of our conversation turned to gene markers. These seem to be something that a lot of other patients I know either in my community or via the blogging world and online communities have become very interested in. I know I am IDH1 positive that is what makes me low grade or slower growing etc but I thought we would hear if I have a 1p19q deletion but unfortunately I still seem to be 'status pending'. Now he said this may be an administrative error and we should know soon but also he talked me through all of this in a mini oncology style session. Firstly he said he appreciates why patients may become engrossed with what they have or don't have but that also it still is not as clear cut as one may hope- our bodies are all different and things such as age and general health also denote how we will all respond to the type of tumour we have and the treatments.
In essence what he meant is there are always options no matter what you have and we should not concern ourselves with what we do and don't have as this will only lead to more distress in what is already a difficult time. This left me with a feeling of hope, upbeat and an optimism about things- live for the now, don't delay and don't worry if there are things you do not have because it's not always indicative of how your life will plan out.
This sort of leads me to another link I would like to share with people who are following this blog as either a patient or partner, family or care giver of someone who has a brain tumour. I discovered a great book by a fellow blogger who I have followed for a while now called Gideon Burrows- Gideon has written a book called 'Living Low Grade' and I just finished this book on Wednesday. It was great for me as it's optimistic, honest but also it meets halfway between medical and Gideon's own personal experiences of living with a brain tumour and other individuals who have contributed to the book. I liked how he summarised and helped me to understand some of the more complex terms- even if it was not his intention to write a medical book it was still extremely helpful. Now some of you might feel you're not ready to read it but for me being 8 months into this journey it was the right time. You can use other sources but I downloaded the kindle version from amazon: http://www.amazon.co.uk/Brain-Tumours-Living-low-grade/dp/0955369576
Gideon recently hosted a Google hangout meeting that he had with three other experts (including a fellow patient) discussing living low grade and again I found this really interesting. I will add the direct link here: https://www.youtube.com/watch?v=Fe1UG-ISNFM
If you are interested to read Gideon's blog you can view this here: http://www.ngomedia.org.uk/tumourist/
The above links may not be for everyone but I know I found the book extremely helpful and I have urged my immediate family and close friends to read the book as it summarises things in a clear and concise manner. I think sometimes I may expect others to be brain tumour experts when they ask me how I am doing etc (this is something I liked about the book and Gideon covers this) but how can they be when before this touched my life I knew nothing about living life with a brain tumour.
Slowly but surely everyone I am close to is finding their own way of dealing with everything but also life is starting to return to what I knew before and is almost back to 'normal' but in a new way.
So I leave this post with optimism...
It'll be 6 months now of living my life and forgetting unless I have any new symptoms of course but if not we'll just see where life takes us. The sun is shining and I can't wait to get my natural vitamin D over this Easter weekend.
Wishing you all a very Happy Easter break and I'll be back soon...
With lots of love
Gem xx
