Brain Fog Blog

I’ve been meaning to write for a while now but in all honestly I haven’t had the to drive to put pen to paper, or fingers to keys.

I did start writing a blog back in January this was going to be around things I’ve learned since this whole ordeal started last year. I’ll get round to this at some point soon.

To say the least, the last few months have been strange.

In January I started chemotherapy, PCV chemotherapy to be specific. I have six rounds in total, each lasting six weeks in length.

I’m writing this as I start round four. Half way through!

What initially struck me when I began was that this treatment would make up most of the year for me, aside from the last three and a half months.

After overcoming that it’s then the organisation and ‘faff’ that comes with actually having to do treatment.

I take two different types of medication at the start of my round. Lomustine on just day one.

Then Procarbazine for 10 days.

Thankfully I no longer have to take the IV drug, Vincristine, anymore as it made me very sick at the beginning.

On top of this they’ve put me on steroids because of the havoc the drugs have had on my stomach.

Oh and I’m also on anti-epilepsy medication indefinitely now because I had a seizure in April (not fun!).

Pills, pills and more pills!

The first two weeks of each round are the hardest.

It’s difficult to describe how it feels, but for me in week one it’s like walking around with lead weights on your feet.

Feeling sick becomes part of your daily routine.

I sometimes get hungry but mostly don’t have an appetite. I also don’t fancy anything particular, aside from in my third round when I got the biggest sweet tooth – white magnums became everything!

Immune systems take a knocking in chemo, so I am much more fatigued than usual.

Anti-sickness meds become very helpful (another pill to take!).

As I said, the amount of drugs I am on has had a huge impact on my stomach.

During the first month of each round I have to avoid certain foods that would not work well with the chemo. I also am not allowed to drink for the first month each round, which has proven hard given the UK’s best spring on record.

Living cyclically is not easy. I’ve realised it’s the most frustrating part of this whole tumour experience for me so far.

Once I begin to feel slightly better I reach the end of the round and the whole bloody thing starts all over again.

This has been quite hard on me physically but mentally, it has taken its toll on me.

People ask me, “how are you doing?”.

I’ll reply with something generic, usually along the lines of “not too bad”.

Truthfully, if I had to summarize my feelings it’s a never-ending mixture of:

Frustrated. Tense. Sad. Happy. Nervous. Scared. Anxious. Optimistic. Pessimistic.  Exhausted. Sick. Fed up.

Those are a few words I’d use but not just limited to those.

I’d like to say it differs day to day, but at the moment it’s getting to be hour to hour.

I’ve lived with anxiety for many years now. We all get it (I think), and it’s something I’ve learned to deal with.

At the moment I feel like my anxiety is dialled up to factor 11.

After one year of living with this, having brain surgery… recovering… doing radiotherapy… recovering… starting chemotherapy… countless blood tests… scans… MRIs…

…and endless (and I mean endless) hours spent in the hospital, sitting in different waiting rooms, then talking to doctors who half the time don’t appear to even listen to you.

I am just so ready to be done with this and move on with my life.

At the moment I don’t feel I have anything profound to say or any real insight to offer.

I am just writing about my experience, or my life as it currently is. I’ve realised its okay to not be okay, and to feel your feels. Although that doesn’t make it much easier.

I started this blog to share my experience as a young person going through this, and I’m sharing it as is.

Now it’s worth saying my life is not bad at all. Even if the darkest moments there is light.

I have still managed to get away a lot in the last year, made memories with new and long-standing friends, and be with the people I love.

That said when you spend so much time lying in bed too sick to do anything you get lost in the maze that is your own mind.

I’ve been thinking a lot recently about my Dad. It’s been over one year now since he passed. I got my diagnosis just a few days before he died but decided not to tell him.

My Dad had two types of cancer in his 62 years on this Earth.

I don’t think I ever really appreciated what he had to go through and what he endured over the last decade of his life.

Physically I saw him go through hell but I never really considered what he must have had to go through mentally and the impact that all of it must have had on him.

Even when he was so sick he continued to work full time and support my Mum, my brother and me.

My Dad watched his own Dad suffer with and eventually die of cancer. And I had to do the same, although in my Grandad’s case there was more time to process that he was going to die.

For my Dad it went from hopeful-ish to dead in the space of two weeks.

I don’t have cancer thankfully, what I have is different. But I still have to do cancer treatment.

It feels cruel to me to lose a parent at aged 26. I never got to talk to my Dad about my diagnosis and every hell that unfolded after.

That is what frustrates me more than anything.

I would do anything in the world to just have one last conversation with him.

If I could, I’d tell him how much I miss him, I love him and that I wish he was here.

I’d ask him how he got through it each day in spite of all that came with doing so many treatments.

And ultimately, I’d tell him, how proud I am to be his son.