Going home

I was diagnosed on a Saturday and moved back to my parents place the following Tuesday due to the strength of the meds I was on. They were pretty evil things, I had to take another lot just to stop the first from eating away my stomach! So I went to stay at my parents with my other half and the cat for the next three months.
It was not fun.
Firstly, I was used to being in my own home so there was a lot of adpating all around and so much stress! But we got through it relatively unscathed, I was surprised but very grateful.
Moving back to my place was... Hard. There were so many associations there, the place I'd been in pain and no barrier of my mother to answer the phones or pick up the letters with any bad news.
I hated being on my own when before I was always happy to have my space. Such a big deal was made about me needing help doing EVERYTHING it was terrifying to be on my own in case I had a seizure or tripped due to my dizziness... I felt sick all the time, I could barely keep anything down for weeks and that was terrifying in itself!
Eventually though I worked out a schedule so I was seeing someone everyday, friends and family, so I was alone only in intervals.
I went to the doctor who diagnosed me with PTSD and health anxiety and gave me pills.
My eyesight settled so I could go back to using the computer again and writing.
I found new hobbies to limit the associations I had with the inability to do the old ones as my tumour grew.

And as time passed and I didn't trip, I didn't have seizures, I woke up every morning without feeling like the world was caving in things started to look up, to change. I spent more and more time on my own, I picked up my old habbits and issues I had before the tumour began to slip away and now?
I have never felt better!

Additional Treatments

Ah, the radiotherapy. And the trials. Grade 2 meningiomas are the rarest of the rare from what I was told so of course they had treatment trials; A radiotherapy option or an MRI option. I was offered to participate and I would have willingly IF I couldn't only do so an hour's drive away from home. Both options required me to go from Poole to Southampton five days a week for half an hour sessions. I couldn't drive and my family and friends had jobs so I could very well get rides and certainly I couldn't afford to spend the working weeks living up there. I felt there were some things that could have been done for me to be able to help from my local hospital but in the end I opted not to participate.
So now I was given the choice of further radio-treatment or 'watch and wait' with regular MRI scans.
One of the hardest choices I'd ever had to make.
They gave me a week to think it over after the first appointment at oncology and I spent the whole time asking people for their opinion and looking into the side effects. The most common response I got was 'I wouldn't want to be in that position' which, as you can guess, was so very helpful! It did amuse me though how when I decided not to have it so many people said that was what they'd have done too!
It was a hard choice and in the end it came down to one simple thing; The cons strongly outweighed the pros. It was something like 7:2 in the end, a so-called 'no brainer' really.
My tumour had been entirely removed, a complete resection so all the radiotherapy would do was kill any lone cells that might not even have been there and since they were not visible my entire brain would be targeted.
None of that sounded good.
I cannot stress enough though, it is a VERY personal choice, no two people, tumours or diagnosis's are the same. This was what was right for me and me alone, I would never advise another to follow my choice blindly, you do what you have to do to get through the NOW and worry about the later when it comes or you might not get that later at all.

My new normal

This was taken almost a month after my surgery. I'd say I don't look too bad! This isn't me though, I rarely wear my hair down and almost never did for a long time after the surgery, I was so worried I'd get it caught and pull something...
Still, it was nice to see this picture and see in it that I was starting to be 'me' again and that eventually, I'd get to a place where it my brain tumour wasn't going to rule my life and would instead just become a part of it.
My point? Do the silly, insignificant things that make you feel better, that make you smile!
It helps <3

The washing of the hair

Now, this probably doesn't sound like a big deal but for me, it was massive.
After my staples were taken out, the nurse said to leave it a couple of days then I could wash my hair, gently, at the weekend. I was already struggling with the idea that my head had been held together by sixty staples that were now gone, actually touching my head seemed impossible! Still, there I was Saturday morning, sat in the bath, in my bikini, my mum washing my hair with baby shampoo.
One of the strangest moments of my life.
And it felt so unbelievably good to feel clean again! The bath water was practically black with all the chemicals and such they'd used during the surgery, it was a bit shocking and very disgusting!
I wasn't allowed to dry it with a hot hair dryer so I stuck my hair in a towel and did little else for a few hours, letting it dry as much as I could before mum finished it with the hair dryer on a cool, very low setting.
It took forever!
But when it was done, it was amazing to actually be able to brush it and tie it up like my old style again. There was a bit of stiffness like the kind you feel when you've had your hair up for a long time and take it out before bed but otherwise it didn't hurt and it really helped me to see myself when I looked in the mirror again.

The shape of my head was still off, but I felt more like myself than I had in a long time and that was truly something to be pleased for.

How many staples?!

Oh yes, with all the craziness that's going on you have to worry about someone using a staple remover on your head as well! I will admit, I was incredibly nervous about this and oddly, that was probably the only thing that kept my mind off of waiting for the results! I had no idea how many there would be though, from the looks of the blue tape, it didn't look like much but when they took that tape away...

That is after half of them had been taken out. I was told the gun they use in surgery holds thirty staples so it was likely they used two whole guns. Sixty staples. It's not a thing you ever think about happening to you and even when it does it feels surreal but in the end,  it didn't  hurt much at all, only when they got close to my ear where there was more flesh, and there wasn't too many there.
I had my surgery on the Saturday, as I mentioned before, and the staples came out on the following Thursday so just about five/six days. It seemed quick to me, I was scared the scar would split, but if it's left too long the wound heals around the staples and that isn't good at all.
The nurse was really wonderful, we stopped halfway so I could take a break and have a drink. She got my ice cold water and I could feel it all along my scar! That's normal apparently but very odd indeed!
I think the whole experience took half an hour, there was no blood from the wound at all, just a couple of dots from the staples themselves. It's a scary milestone, but so good to have them out!

The wait

I think the worse part of the experience for me was the wait between the surgery and the appointment with my consultant. Since my tumour was removable, the biopsy was taken from the removed tumour and I was going to find out my grade. I knew the stats, how likely it was to be cancerous, grade 2 or grade one and I knew what each meant but I had very little idea of which it would be.
They know very little about what causes a brain tumour or how fast they grow since many can stop and start a number of times but mine was BIG and for those ten days my anxiety was through the roof. We all hoped for a grade 1, of course, but myself and my partner were less hopeful.
I was scared to sleep, fearing I wouldn't wake up, I had panic attacked where I couldn't breath and would burst into tears at random times and even though I was told to rest, it was impossible. I was prescribed antidepressants for health anxiety and tried to focus on the steps between the surgery and the results of the biopsy but it was difficult. I was still struggling to move about by myself, my head was swollen and sore and my words were muddled. I found it hard to even watch TV thanks to the stigma the tumour had caused in my eye and the swelling not allowing me to wear my glasses for too long!
One of the things I found most useful was the Headspace app, the meditation it teaches really helped but it's hard to explain how; it isn't instant, just at some point down the line you realise it has been helping and that gives you such relief! You can get the full app at a reduced price if you register with https://www.anxietyuk.org.uk/ and I would recommend it as a small way of getting some control back to your life.
In the end, it was a Grade 2, the rarest of the three but not the worse for which we were grateful. There is something like a 33% chance of re-occurrence but they took everything they could so I have the yearly scans and keep my fingers crossed, it's all I can do.
I was offered radiotherapy for any cells that may have broken away but it was impossible for them to know and radiotherapy has it's own side-effects which, in my case, didn't warrant the treatment.
Everyone is different the decisions are hard every step of the way but there is so much help out there, even a hug when you're crying because you just don't know can mean the world.

What's a craniotomy?

A question most people diagnosed with an operable brain tumour have probably asked themselves and others a time or two and probably you're not getting the answers you really want. Mine was something of a fast turnaround, I was given less than forty-eight hours notice after a cancellation. I had my surgery on a Saturday and was home on a Sunday. Crazy, right? It really was but I was relieved to be home, it was so much more relaxing to be in a place you feel safe and comfortable with the people you love.
Thank goodness we had the number for the ward I'd been on!
I woke up the first morning like this;

We were all a little bit worried! But it's completely normal, we were pleased to hear! Still a bit of a shock, the nurses on the ward were a lifeline for quite a long time and the ones at the Wessex Centre in Southampton still are, which is always a comforting thought.
I had the stockings, I had the 'careful of pins and needles in hands and feet', I had the 'washing machine' sounds in my head, I had trouble walking steadily and my speech was a bit muddled also, especially when I was tired, I couldn't open my mouth wide enough to eat much that wasn't soup of sandwiches cut into fingers.... All normal. No less terrifying, but normal.
I was lucky to be prescribed only paracetamol and codeine on leaving the hospital so my experience was fairly quick and easy but as you will see in my next post, what is really happening to your body and what your mind is making you think could happen are two entirely different things!