Personal; Acceptance

Let me be honest

I’ve had a pretty rough year and a half. I will give more detail than my previous blog post “Personal; Not yet found” because I am in a different place mentally than I was then; I’m in a more accepting frame of mind. I have been honest with close friends and in the upcoming couple of months the impact of this years and a half is going to have a greater impact than before.

A wet and rainy April 1st

The worst April Fool’s joke was played on me in 2016. The lead up to it began in late February after having a lovely weekend at a dance workshop and receiving a couple of awards for work I had done over the previous year and a half which was a huge boost to my confidence soon to be utterly flattened by waking a couple of days later having a seizure… I woke beside my partner and had this feeling that something awful was about to happen. [My partner has been AMAZING throughout this whole experience and I am so glad they were there when it happened, I can't thank them enough.] The weirdest thing about it was, though I had never had a seizure before I knew that was what was about to happen. I couldn’t speak, I was held in a spasm that meant I couldn’t move to alert my partner to what was happening while they lay asleep beside me. Eventually I managed to make some form of noise that woke them before I lost consciousness. I woke to the paramedics stood at my bedroom door.

So, at ~3am I was packaged off and delivered to a disgruntled A&E doctor. In a shaken state I was discharged and we made the short walk back to my house (I was at university studying medicine at the time and my partner had contacted my parents at home, they came up the following day) I took the day off university as I was completely drained and lay on the sofa all day. I managed to catch a neurologist at a seminar the day after and fortunately they were able to slot me into their clinic that Friday.

I must mention at this point that I was incredibly lucky in contacting medical professionals directly and getting care in a very swift manner. I am utterly grateful to my whole multi-disciplinary team for EVERYTHING they have done for me, going out of their way to make my experience as comfortable as possible.

I was told at this consultation that the most likely outcome, as a person of my age, was that it was a single seizure brought on my stress, viral infection - I was beginning to come down with cold-like symptoms - and fatigue, all of which I was experiencing. This conclusion matched the medical  teaching I had received up until then, I was told I would have an MRI and EEG, again, as I expected. With this knowledge I left waiting upon these tests, at the same time every night worrying I would wake to another seizure, scared to go to sleep, worried it could happen at any time… I couldn’t sleep alone, go to sleep alone. My partner put me to bed and slept beside me almost every night.

My MRI letter came through for a Sunday morning. It was a warm and kind experience. The staff were brilliant, the clinic was empty apart from me and I was seen almost immediately. I began reading an article about Deadpool in a magazine and didn’t finish it, I thought “damn, I’ll never know how it concludes,” little did I know I would have such an opportunity…

I awaited the letter for my EEG but instead of getting this next I got a phone call asking me to return for another MRI, this time with contrast. This shook me a little but I justified this with the reasoning, “they don’t do contrast on the weekends, especially a Sunday.” I was seeing my academic tutor that day anyway and discussed what had happened and they were so incredibly supportive and echoed my thoughts and that of the neurologist.

This MRI was much less pleasant. Issues with cannulation, feeling faint, loud and busy clinic. It was all very negative so when I was called back for another I was in a pretty bad place. By now I knew there was something going on but I had no idea what! Let’s just say it begins with a ‘C’ and there is an astrology sign of the same name…

So, at the age of 20, on the 1st April 2016 after a month of uncertainty and scans I was diagnosed with a brain tumour, cancer. With a referral to a neurosurgeon to discuss my scans from a prospective surgical point of view. My world had turned to jelly beneath my feet and I was lost in a very dark place. It is not life threatening, but I was also diagnosed with epilepsy. This is being successfully controlled and I have only had a few small focal seizures since my first and not a full blown convulsive seizure. I am so lucky to be in a place where I can say that. Though I am still not permitted to drive as a result of these following seizures I am very fortunate not be more effected by them.

[The tumour itself now has been histologically described as a grade 2 astrocytoma but is irregular in both it’s behaviour and presentation. It sat in a discrete little bubble in my right frontal lobe (both odd in shape and location) and has since grown within a year of surgery so is a quick mover and shaker wanting to have lots of attention resulting in further surgery. So, it’s histologically a low grade tumour but it reacted quickly and doesn’t look like it should!]

'X' marks the spot

We decided to see a neurosurgeon in a different trust, we moved my care into the hands of a different team and I saw the neurosurgeon where they were very positive about performing successful surgery and could slot me in “as soon as I wanted.” Initially I was mildly excited at the prospect of having surgery but conflicted too… “I’ve only just got it and now you’re taking it away! I wanted to do a sponsored ‘grow my hair and shave it all off’ and you want to do it ASAP???” I went back to my university house riding a high of adrenaline but the following day both myself and my partner, who has been holding my hand and supporting me throughout, completely broke. We were swept away by my dad who took us back home where we stayed for a good long while. I had handed in my leave from university and was leaving without taking my 3rd year exams. I had done almost 3 years of medical school but not completed the last, an incredibly frustrating place to be.

So the wait began for surgery. My confidence was almost non-existent. I couldn’t fly abroad to a holiday I had booked but I did all of the other things I had planned: going on a little holiday with my partner, seeing Coldplay live, and other bits and bobs, I made the most of what I had. “I was going to have brain surgery, who knew what was going to happen,” whispered the voice in my head “you might not wake up.” There were a lot of dark thoughts which have since been addressed with many sessions with my wonderful psychologist.

So then the day came around, the 5th July 2016; the day of my neurosurgery. I was so scared. I cried most of the morning. All the way up until I was 'put under' (general anaesthetic).

I woke up! The surgery was incredibly successful, I remember very little of that time apart from being asked to wiggle my fingers and toes almost constantly, and that toast is the food of angels! This particular surgery is theoretically a day case and I was able to leave the next day! I spent only a night in hospital after brain surgery, what!?!?

Toast heaven

The following few months were healing both mentally and physically. I had impressive facial swelling, huge amounts of fatigue (I had to embrace ‘The Nap’) and my pain was managed by successful pain relief.

It took me until November 2016 to regain enough independence and confidence to approach my old primary school to volunteer there. At this point I was still expecting to return to my medical studies. I spent a few mornings a week spending time reading with the children and supporting them where needed. But when I got home I would crash. The frustration I had comparing what I could do then with what I was able to do while I was studying at university was unbearable! I couldn’t manage a morning at a primary school without needing a nap in the afternoon but previously I could spend a 5 day week of 7 hour days studying in lectures and seminars and top it off with a weekend at a dance workshop! How was this possible? It was soul destroying!!!!

I gradually built up my confidence - with the support of my partner, family and close friends who I confided in - but in December I had a strange small “seizure.” It may or may not have been one but I’m playing on the side of caution, being honest with myself and for the safety of others taking that as my “can’t drive from” date. This prompted a scan and trip to my neurologist and oncologist where it was decided that more surgery was possible. This was scheduled for the 18th April 2017. Following this decision I decided to withdraw from my medical studies altogether. I had thought a lot about it and pursued work experience in different avenues preceding this decision so felt well informed and confident in my decision.

I was in a much better place mentally to digest this information and as such was able to cope with the run up to the surgery much better. I changed how we went about organising people and rather than my partner coming to see me a week after my surgery, they came down to visit me the following day while I was in hospital, this was much better for both of us. Though with nausea and a haematoma causing me to have an extended stay of a few days in hospital, the experience meant I was much better prepared for discharge from the ward.

Super hero confidence

My recovery was amazingly swift this time round and only a couple of months post surgery I felt at my best again! I was chomping at the bit to get back to volunteering again. I wanted to do, to be, to go! My psychologist had armed me with so many techniques and skills to be able to support myself and be sensible in my actions, this helped me to rehabilitate myself in a level-headed manner. I awaited my post op scan which I had on the 3rd July 2017.

I still don’t like cannulation and with a contrast scans it’s necessary in order to inject the dye, but this one was much better. I had Jack Johnson playing (a very calming choice if anyone reading needs an MRI ever, which I hope you don’t!!!) I had gently been made aware that radiotherapy was on the cards because the tumour had grown within a year of successful surgery, it was just a matter of when…

[At this point in time I am more confident in my consultations so go armed with questions that help me direct the conversations and I get good answers and information for my queries and concerns. This helps immensely and if you need ongoing treatment or medical contact I cannot recommend this more! Any time you think of a question no matter how small write it down. Write it on the back of your appointment letter, you need to take it with you anyway so it’s the perfect place.]

Because I travel for my care, they make a point of combining appointments where possible so I was able to see my oncologist after my scan. They said that a 6 week course of radiotherapy is needed and that a smaller tumour, rather that waiting for it to grow again, means less radiotherapy is needed and will have less of an impact on the rest of my brain, so, sooner is better. I will be starting radiotherapy in August 2017. The cogs are being set in place for specific dates and at this moment I know very little about what to expect. I have requested to do the simulation/tour of the therapy/department (one of MY questions. Again, worth doing!!) I have things planned in the meantime, including my birthday, I will not let this news interfere with my pre-existing plans.

I could never have imagined that before I was 25 I would be diagnosed with cancer, have 2 operations to "de-bulk" said brain tumour and have radiotherapy. My past year and a half in a sentence!

Naomi