Grief vs. Belief

Life-changing events have come and gone on several occasions in my 33 years; my dad’s dementia, Mum’s fractured pelvis, and my brother’s stage IV lymphoma. Some have come and not quite gone, too – my own brain tumor still hangs around like a (thankfully now small) reminder, and that’s what led me to Elephants and Tea!

I feel a bit like you couldn’t make that series of events up if you tried.. or at least, you wouldn’t really want to. But in the spirit of Elephants and Tea, I hope to flip some pretty grim stuff on its head a little bit, because the thing I’ve mostly learned from the last few years is that there really are silver linings to even the worst things. 

Grief is one of those, but it’s also something inevitable, which has been intertwined with my young life since the age of about 23. That was when we found out that my dad’s massive heart attack had actually also been an undiagnosed stroke, which had in turn kick started early-onset dementia. I was working in London in a busy job in Central Government and returning home to Wales when I could and was in the office when Mum called me to confirm Dad’s diagnosis. 

Fast forward three years, to early 2015, with my brother living in London too. His weight loss didn’t spark any panic, because he was spending a lot of time at the gym. The only way I could get him to come over was to feed him, and one lasagna night, he showed me a little lump near his collarbone. I asked him to see his doctor – he did, and his subsequent biopsy diagnosed stage IV lymphoma. He was 19 at the time. I collected him from his first chemotherapy session just days later. Seeing my little brother hooked up to a bag of poison was not something I was prepared for. I bundled him into a taxi home, and cried in the next room while he slept it off.

November 2015 – I’m away in New Zealand when Mum says the words “I’m in hospital…” Dad, whose dementia had progressed, didn’t notice the dog lead he was holding wrapping around Mum’s legs. The dog ran off, the lead tripped Mum, and she fractured her pelvis. I travelled 36 straight hours to get home from Auckland. Mum remained in hospital for a full month. During that time, Dad had to be admitted into a care facility. How Mum coped at home by herself before that I’ll never know, but leaving Mum in a hospital ward and Dad in a respite care home absolutely broke my heart.

During that time, and for some time beforehand, I had these odd dizzy spells. Nothing dramatic, but I felt like I was on a boat sometimes when, unfortunately, I was in the office – far less exciting! I put it down to bad diet and convenience food in a busy and rushed working life, because my time was definitely not my own. I was stuck to my work phone and e-mails, but to be honest, I loved the buzz of work. 

My doctor prescribed me sea sickness tablets, which didn’t work. Some time later, I went back, and got a referral to the Ear, Nose and Throat clinic. They examined me, told me I was fine, but sent me for an MRI and some balance tests to close my case. I had a scan a few weeks later, on a Saturday (I turned up a week early by mistake!).

Monday mid-morning, the hospital called to ask me to go in on Wednesday. They couldn’t tell me why; just that I had to come and should bring someone with me. That’s when the grief crept in again – I couldn’t help but fear that I was about to lose something else. Not knowing what was wrong was unbearable, which I know many of you will identify with. I didn’t sleep at all. 

The consultant I saw that Wednesday, following an excruciating wait, told me the scan had revealed “a mass.” My case had already been referred to King’s College Hospital, and their Neuro-oncology team would be in touch. How do you tell your Mum, whose husband is declining and almost lost her son to stage IV cancer, that she may lose her daughter too?

Vicky, the Lead Clinical Nurse Specialist, invited me to clinic the following Monday and the whirlwind began; she has been a pivotal support for me ever since. The surgery date was set, I buried my head in work, and only spoke about it on a “need-to-know” basis. 

The operation was postponed on the day it was scheduled for, the adrenaline disappeared, and I crumbled into four days of sleep. This time, the grief was because I felt like I’d been robbed of the knowledge of whether I would come through this or not. Helplessness is powerful, but that was also where things changed for me.

The process kicked in again, and one month later I went back into hospital. This time, I met Mr. Gullan, and Mr. Zebian – two very different gentlemen, but with the common purpose of removing things that really shouldn’t be there from exceedingly delicate places. I chose not to go back into work for the following three weeks and spent time around town and with my Dad at his care home. I told him all about everything, and even though it didn’t make much sense for him, it was cathartic for me. I told him I’d see him in a few weeks, and I hoped I was right.

My surgery went ahead successfully – twelve hour tumor resection and Rickham Reservoir insertion – but was a terrifying experience for everyone but me. I had almost found the strength not to grieve for something that hadn’t happened yet. And whilst I do have epilepsy now, I have gained far, far more from my life ever since. There were close people in my life at that time and since who really should have been there for me, and who weren’t. I definitely grieved for that, too, and it’s taken a few years of weekly therapy sessions to come to terms with how that obliterated my confidence. I’ll always be sad about it.

I’m 33 now, and whilst I have plenty of adulthood’s hiccups to deal with, I am consciously living a life I can be proud of. I finally lost my dad on New Year’s Eve 2019, but I’m thankful not only for the wonderful life and love he gave us, but also for the fact that he died before Covid-19 ravaged the world, preventing people from seeing their loved ones in their last hours. 

Sometimes I wonder how so many different things can happen to one family, but I always come back to the realization and the acceptance that they have. It’s all taught me stuff, but particularly this: whilst grief is a very strong emotion, belief can be even stronger if you just let some in.