So what's new with me...

So what's new with me...

It's been 8 whole months since second surgery (0.2) I'm going to call it for the purpose of today's blog...

Over the past few months I have met with my Neuropsychologist in London. I was a bit apprehensive as I've felt for a while now that inside maybe things internally aren't what they used to be but equally I know that none of the big major deficit stuff happened such as the not talking or not walking again but nonetheless I feel differently and it seems like even the most basic of tasks takes me forever to understand and complete and I'm not sure why but hopefully I can try to explain.

I heart London! 

First time around with my surgery it was different. I think I felt physically in pain more, not that I am pain free now but generally second time around I have recovered, in a physical sense, so much better than before. First time around I had support locally which meant for example, I could meet up with people who were going through similar things and people that I could relate to, but this time around unfortunately that group no longer exists however I have reached out to some of the organisations that I have used previously such as Brainstrust- through them, I attended an amazing calm Mindfulness Art class which was super and it was great to be around others who understand what you are going through and can relate to you.

I also have some awesome friends who have really been there for me too however we are all dotted around the country so we can't always meet up as regularly as we would like. And then of course there is Carl and he's my rock really. I'm not sure what I would do without him or my Mum. Just want to take a moment to say thank you to all the other people who have been there and supported both of us- sorry it's all so complicated at times but we really appreciate all of you.

It can be very hard sometimes as with all this you go through a constant state of anxiety which is waiting scan to scan- scanxiety is so real. And then knowing that the likelihood of news will be either stable (the best we can hope for) or that the tumour is back or has changed and it's time to fight it again. I never know what might happen and I also feel a tremendous sense of guilt because physically on the wellness trajectory, for a brain tumour patient, I am doing well, however inside I feel a bit lost in terms of the what now or what next and who am I etc?

I know I am an Activist so I'm almost better when there is action being taken, so being back in the 'watch and wait' cycle is tough but also the guilt creeps in because I have friends in the brain tumour world who are going through very tough things right now and I guess I then feel bad as if none of this is happening but equally it is, it's just I have a barely visible scar too so I know people maybe don't believe this is true but I can assure you that it is- have a feel of my head that has the lumps and bumps still! Again fine line between needing to identify as a brain tumour patient but also just wanting to be you, the old you. I think I'm maybe I'm in mourning now of the old post surgery me as I am now post surgery me 0.2!

My hair is growing back very oddly in places and tends to stick up...that really is the last memory of surgery 0.2 now. This is a trivial thing really as I am so grateful that I have thick hair and can style it to disguise. It is just be a little harder to work with as the texture is completely different to the rest, it feels more coarse so definitely no bleaching there! Maybe that also affects how I am feeling as for many years I had highlighted my hair blonde, however these days I am more brunette ombre thanks to my brilliant hairdresser Kat

So back to the first Neuropsychology appointment- we went through the tests again that I completed pre surgery and some of those I struggled with. I think I put a photo on an old blog which shows you the names of colours written in different colours so that is one example of the test part. It's a long old test which took approx 2 hours and we also talked about the above and how I am feeling. I still need to have a full report of this to know exactly whats what but essentially there are some new deficits from surgery.

There is nothing major as I said above but a lot of it is to do with cognition and understanding. And some is then compacted with the anxiety and worry I feel and then I get myself into a "I can't do this" state of mind and then it's a vicious cycle really or I forget words and just sit there feeling overwhelmed, helpless and frustrated. There is work that can be done to try and support me there but equally it could be a case of accepting that this is the new me and trying to go from there. I will say it again this journey is difficult and I am desperately trying to hold on to who I was pre all of this and it's so hard. I must practice patience and kindness towards myself, as I would to someone I know and love.

To help with some of the above there is also therapy too. I have through a previous employer met a great counsellor who specialises in trauma. I no longer work for that organisation so I have self funded some therapy sessions, however with limited funds it can be difficult to access therapy. I may have to consider another route such as talking therapies, however this could be quite brief and I am not sure if this would be the right kind of therapy I need at the moment. For now I am grateful for the support of the Neuropsychology department at my hospital. I think as well they are best placed initially to conduct any tests as they are they are specialist Psychologists with neurological expertise.

As ever please comment, subscribe or drop me an email gemingemgems@gmail.com

With love,
Gem xx

Post Surgery Review...Craniotomy Part 2 and other stories...

Hey All,

So I think you will all guess from the title that I am out the other side now. Thank you for bearing with me and waiting. I've had to find a time to sit and write this all down. I had surgery back at the beginning of December and then it was a recovery from there to now. There is so much to tell and so little time but let's take it back to the day before...

So I had lots of worries and concerns pre surgery- I think as mentioned before I had been told about a high risk of stroke, speech and language deficits and everything in between to the point I wasn't sure if I could go ahead with it all again however I did and also this time I was fully awake. We went in the day before on the Tuesday and I was seen by a Speech and Language Therapist and also met with my Surgeon and Registrar. I also volunteered to have a sample part of my Dura Mater (one of the outer layers around the brain) taken and a blood test which will go towards research into why brain tumours develop in the first place- I was told like most things this won't give us answers overnight but again I figured well why not!

I can't remember if I mentioned this but I learned there are 3 parts to a surgery 1. opening, 2.the actual removal/surgery and 3. closure. What I had first time around was asleep, awake, awake e.g a general anaesthetic followed by being woken up and going through lots of speech and language tasks. I had requested to have it this way again because I can't even watch Holby City or Casualty so the thought of doing a craniotomy fully awake, filled me with shall we say a lot of trepidation, however I am happy to report that I survived it and that I am doing ok, much better than initially predicted I think, and possibly to the point where lots of people maybe don't believe I have even had the surgery...I can assure you I very much have!

Getting my dots on the night before...

A few days post surgery...slightly smaller bruise this time...especially if we compare to my first surgery...

Home and with my rainbow headband again- it's amazing to think how they do this surgery isn't it! and thank goodness for all my hair! 

I'm considering doing another video for folks that are interested and linking to my You Tube account so let me know if you are interested :)

The night after surgery was pretty hairy- I didn't realise at the time but I had what is known as a CFS leak- this is Cerebal Spinal Fluid and where a drain is put in after surgery I think what happened is that it drained a bit too much. It meant I was very sick the first night (actually sick) and then the next day when the Nurses advised me to try sitting in the chair I passed out. This didn't happen when I had my first surgery but I think on reflection this was because I'd not had a surgery where you are fully awake, I'd had a general first time around and I think that maybe this meant I was a bit more still initially afterwards but if I am 100% honest I can't really remember what I did differently. Apparently its quite common so nothing too much to worry about, I just felt quite crappy at the time.

In the run up to surgery I got myself a lot fitter as I had spent a lot of time at the gym and I also lost some weight so that I would hopefully recover quicker. I think in comparison to last time when I had the surgery I have definitely recovered a lot quicker however I have also needed to rest so that I can heal properly and get myself well again.

So in terms of results and what happened post surgery is I went back 10 days later for the Histopathology. I am still a Grade 2 but I have been reclassified as a Diffuse Astrocytoma under the new WHO guidelines. What this means is where they now know more about the genetic make up of brain tumours I fall more into the 'Astrocytoma' tumour type than I do the 'Oligodendroglioma' type and therefore I'm not a mixed glioma anymore or what was known as an Oligoastrocytoma. Brain Tumours are classed as Low Grade (1-2) and High Grade (3-4) and there are much more severe grades/types of brain tumour/brain cancer that are highly aggressive. I have known and know people with all types of brain tumours both operable and inoperable. Benign or Malignant, all tumours in the brain are difficult and can cause significant problems and are incredibly tricky to treat due to a whole host of reasons including the blood brain barrier and causing damage to the brain itself. Surgery and other treatments including chemotherapy and radiotherapy can sometimes cause further damage too. This is particularly true in children and young adults with developing brains as the risks of surgery and treatment can cause severe deficit.

The main problem with my tumour and the reason it's not curable is because even with the best surgery, microscopic cells can remain and these are the things which can then keep growing, multiplying if you like and spreading on again, in some cases changing up a gear into a more agressive tumour or brain cancer type. If you can imagine the tumour isn't a perfect sphere it's more like a lump with tendrils so it extends into the brain...it's the brain turned bad if you like. It's also those tendrils which extend into places like my speech and language centre. The best outcome currently that we can hope for is stable scans for the foreseeable future where nothing much changes although I'm starting to worry that when we are told stable, it's not really stable 'stable' as there has been a bit of confusion with me over the years and what we were told was "scanner error" previously there was a discrepancy over this and hence me being called in last April to see my Surgeon again. I hope moving forward that this will work itself out because we are being lead by the team essentially to help inform us and to keep things in check.

So what now...well I keep asking myself this really. We left hospital and went home to recover. I had an outpatients appointment 10 days later for the above results and I also had my first post surgery MRI scan at the end of January. I was advised that I could have radiotherapy however it's a slightly grey area (if you will pardon the pun) when it comes to Grade 2 Diffuse Astrocytomas. Everything we have read suggests that there is no 'right time' to have radiotherapy if you will however where I have had a brilliant resection or as it's called a 'stealth guided redo' in theory there isn't anything left essentially to apply radiation to (bar microscopic cells) however when I met with the new Oncologist last week she wanted to take the MRI back to the next MDT as the report on my last MRI in January showed some areas that were in technical terms "lighting up"- translation is that this could mean there are some parts of the tumour still there but very small, microscopic parts. I think what this might mean is that compared to the MRI you have almost immediately after surgery (I had mine 2 days later) there are some slight changes that need to be discussed at another MDT. I'm not in a hurry particularly to find out the outcome of this as I believe I have had a great surgery and am continuing to live my life the best that I can however it would be good to know where we are again. Most likely is that I will return to 6 monthly interval scans and back to good old watch and wait...wait and watch...

Thank you to everyone that has read this blog post and got to the end (hoorah!) I'm sorry if there was anything you found difficult to read- the aim of this blog for me is to try and be honest with everyone who reads it and it contains a lot of my thoughts and feelings which is helpful for me to put down in writing. I just want to say thank you so much to everyone who has supported myself, Carl and to all my family and friends that quite frankly make all this so much better.

I want to dedicate this blog to the gorgeous Mollie who was born the day before my surgery to my lovely best friend Jo and her husband Paul. I am very proud of you both and so happy that I got to meet this gorgeous one. We met up again recently and I bought her this cute bunny!...early Easter present!

Anyways bye for now my friends and I will be back soon!

Gem xx