Jenna’s Journal - September 2021

 

Is it September already? Where has the time gone. It will soon be that time of the year, beginning with a C, that shall not be mentioned in full until December.

With this being the first Jenna’s Journal I want to just highlight a couple of events that happened during August.

First off, Yeovil Pride. The first Pride event in Yeovil happened in 2019 and coincided with the 50^th anniversary of the Stonewall Riots. This was the event that led to the launch of the Gay Rights Movement and the first Pride Marches. Yeovil’s second Pride March happened on the 21^st August and saw people from many different places coming together to celebrate being, or having family and friends, who are LGBTQ+.

For me, it was amazing seeing so many people coming together, and whether it was true or not, my impression was that there were more youngsters there than adults. Listening to the speeches by two young people I believe that the future for LGBTQ+ people is in safe hands.

The second event happened a week later and saw Yeovil’s community coming together at Yeovil Recreation Ground to celebrate its diversity. There were opportunities to sample food from all over the world, as well as workshops and entertainment putting on by members of the communities. The afternoon ended with everybody dancing in front of the stage where the entertainment had taken place.

The only downside for me was the sunburn. I always do it, go out, know I should put on the sun cream but think “nope, it will be fine” and then come home looking like a lobster.

The final event I want to highlight was run by Yeovil Creatives. Yeovil Front Yard Fest took part throughout August, with people from across Yeovil and outside, decorating their front gardens to bring a smile to people’s faces. My own front garden sported a skeleton called Rib, who enjoyed sitting in the middle of a beach scene, and a second called Bones, who spent the month buried in sand.

If you missed any of these events, check out Yeovil Pride, Yeovil Front Yard Fest and Yeovil Together on Facebook, other social media platforms are available.

How Jenna’s Journal is going to develop I don’t know. If anyone has anything that they’d like to see covered, leave a comment.

Next month a friend and I are going to be doing a Fire-walk in aid of MIND in Somerset. I’ll let you know how that goes and what it’s like to walk barefoot over embers burning at over 1,000 degrees.

 

2020

Back in 2016 I felt that I'd reached the point with this blog where I had nothing more to say and that it was time to move on.

I'd completed my journey through the medical system and come out the other side having done everything I needed to in order that I'd feel comfortable living in my own skin.

The last four years have been a challenge.

Some of my goals have fallen along the wayside. Others I've managed to achieve.

In 2017, Rhys was diagnosed with terminal cancer. On the 11th September he passed away quietly at our local hospice. The six months during which we knew that he was dying were packed full of life and memories.

Losing Rhys broke Tracey and I. Nothing can prepare you for losing a child, no matter their age. We both ended up having counselling and being prescribed anti-depressants. We've both struggled with the loss, and still do even now. We might be able to get through each day, we might be able to do all the normal things that others do but there is a large Rhys sized hole in our lives that can never be filled.

After Rhys died I started a blog as a way of helping me cope. I've imported those posts here and deleted that blog.

Just before Rhys was diagnosed with terminal cancer I had started a photography course, at foundation level. Last year I finished the course and decided that I would enrol on the first module of a photography course. I'm slowly working my way through that. I've enjoyed it, met new people through it and managed to learn so much more about the topic. I'm really enjoying it and will, hopefully, be carrying on with it over the next few years until I've completed it.

At work I've been involved with our company's LGBTQ+ network and have done a number of talks and training courses. Each has stretched me, while enabling me to share my story with others and help raise awareness of some of the issues that face the transgender community.

Which brings me to why I've decided to continue this blog.

The pandemic has given a lot of people the opportunity to take a fresh look at their lives and what they want from them. It's given us people the chance to look at the impact we have on the world around us, including our family, friends, neighbours and communities.

The events in America, and around the world, that have followed the death of George Floyd show that those minorities that are on the receiving end of hate and persecution are no longer willing to let things continue as they have been, and want change.

JK Rowling launched what people took as an attack on trans women and trans youngsters. Reading what people were saying on social media platforms like Twitter, was a tipping point for me. I've been quietly following what has been going on with regards to my community for a lttle while now.  Life has been hectic but that's no excuse. I'm lucky and privileged. I've not received the harrassment that others have.

Over the last few days I've been considering what to do and come to the conclusion that, the very least I can do is to start sharing my story again.

It might not be exciting, it might not be interesting, but it's mine and its one of a trans woman who is simply trying to have a normal life, to do things with her friends and to enjoy the world that she lives in .

Four years on since I said goodbye to this blog it's time to put fingers to keyboard and start writing again.

Broken

The last few weeks I've been in a bad place. I've kept going, despite feeling suicidal. The only thing that's kept me going is that I feel I owe things to people.

I owed it to the Burleskin girls to be at Home Farm Festival performing with them. Both in troupe routines and doing my solo.

I owed it to my coaches who have put in a lot of time and energy with my training. In the last 12 months I've come a long way from where I am physically. I'm much more capable as a triathlete than I was when I crashed last year.

Yes, it's been a year since I admitted that I needed help and started bereavement counselling and taking anti-depressants.

I owed it to work to complete the tasks I had. I owed it to colleagues to work on developing the transgender awareness workshop we put together and had been delivering. I owed it to people to support them.

I did everything I could to meet those commitments.

Until yesterday.

Things got a bit stressful at work in the morning, so at lunchtime I went out to get a bit of fresh air. I sat in the car and felt tears starting to flow, so I headed to the doctors and made an appointment to see one of the GPs. I was heading towards a breakdown I know, and if I hadn't got help then I don't know where I'd have ended up.

After making the appointment I drove, firstly home, and then to the crematorium. That was where the tears really started to flow. I miss Rhys. I hide it well, I hide the pain of losing my wingman, but I still miss him and the pain is always there, even if I don't admit it, even to myself.

So yesterday I finally broke. Not physically but emotionally and mentally.

The doctor upped the dosage on my anti-depressants, which will take a couple of weeks to kick in but that will help when they do.

I was supposed to be in Finland for the next week but the chance of me spiralling downward without anyone around to support me didn't warrant the risk so I've not gone. I've also pulled out of my remaining races this year and stopped being trained by my coaches.

That doesn't mean I'm going to stop training, it just means I'll be doing it at my pace and figuring out what I want to do as I go along.

Going forward I'm going to work on sorting out my mental and emotional health. I want to get back the strength I used to have, the strength that was at my core. I'm determined to do that.

A lot of the things I've been doing have been geared around a belief that I needed to do them. I'm changing that now. There's something I've wanted to do for a while so I'm going to do that. I'll be sorting that out next Tuesday.

From now on I'm going to make it a priority to do things I  want to do, not need to do because of a sense of obligation to others. Life is for living but it is also for enjoying. If you're not enjoying what you're doing then why are you doing it.

Don't live your life doing something you don't enjoy. Do something you love instead.

There are days...

… when I just wish I could die. Where I could just lie down and be no more. Let this world move on and leave me in the past.

Today is one of them.

I was supposed to be taking part in a sprint triathlon at Blenheim Palace this afternoon.

Last night I got all my gear ready, packed away in my transition bag. Although I should have got an early night I didn't, I stayed up later than I should.

This morning I was awake by 5am, but we stayed in bed until almost 7, enjoying having our bed back after a week where my sister and my nieces have stayed with us and the twins have slept in our bed.

Getting up I was feeling fine. No nerves, no trepidations. I was looking forward to the day.

Going downstairs I put the kettle on to boil, and put tea and coffee in Tracey's and my mugs.

Feeling a bit queasy I returned upstairs to the toilet and ended up kneeling while retching. No racing for me today.

Yesterday I'd been feeling physically uncomfortable all day but for other reasons. When I got home, and had eaten, I took some medication which sorted out the problem.

Thinking about it today, I've been behaving abnormally for me. Certain bodily functions have been out of whack recently. I've also been eating a lot more junk foods like chocolate, ice cream and crisps last thing in the evening for a couple of weeks. Similarly at work I've been eating a lot more sugary snacks than usual; biscuits, cakes (breakfast has been a couple of iced Chelsea buns on two or three occasions).

Not racing, again, today has left me feeling down. I'm sure that Paul and Darren my coaches are going to be disappointed that I've not raced again, after all their hard work getting me to where I am. I feel like I've let them down.

I feel like I've left myself down to.

I don't want to let people down like this any more. I don't want to let myself down like this any  more.

Rhys shouldn't have died when he did, he had so much life ahead of him, so much potential. If any one should have died it should have been me. I'm 52 years old, I've had a decent life, I've done plenty of things.

Today, I feel the loss of Rhys more than ever. Today, I feel like letting the world, the universe, leave me behind and let me lay down to rest forever.

Memories

When I think about Rhys, a lot of memories come to mind. Some, however, are more powerful than others.

Thomas the Tank Engine and the Magic Railroad
Rhys loved Thomas the Tank Engine when he was little. As he got older we bought him train sets that he would build in his bedroom, taking them down when he'd finished playing with them. We'd watch Thomas the Tank Engine on TV, before he grew out of it and into other shows like Power Rangers.

One Christmas we bought him Thomas the Tank Engine on video. It didn't take long before we had to play the video for him. Up until then Rhys had never sat down to watch anything that was that long. I sat down in the arm chair and he climbed up on my lap. For the next hour and a half the two of us sat there at watched the movie. Rhys's attention completely captured by it.

I don't think that either of us got so immersed in a movie again until Avatar came out and we went to see it at the cinema one Christmas. Walking out of the cinema I looked at my watch, turned to Rhys and asked him if he knew what time it was. He had no idea. When I told him, we were both stunned by how quickly the time had flown by.

Sitting in the cinema watching the trailers before the movie.
At the end of each trailer we would look at each other and then give a thumbs up, thumbs down or a shake of the head depending on whether we wanted to see the film or not. Sometimes if we really wanted to see it we'd be nodding our heads.

Mock fighting/pushing each other off the bed.
Finger Jab!

Rhys and I had a game we used to play whereby we would try to poke each other with out index fingers. Sometimes we'd use more than one finger if we were trying to keep count of how many we'd managed.

Invariably these turned into mock fights.

At times these fights would erupt while we were watching something on TV in his Mum and my bedroom. Very quickly things would escalate into wrestling matches where we would try and push each other off the bed, the winner being the one that could push the other completely off the bed, keeping just one part of the body on the bed counted as still being on it.

Watching him sleep when in hospital.
Over the years we spent so many times in hospital. Being in there was tiring at times. There's something about being in a hospital that simply induces sleepiness in even the healthiest of people.
At times Rhys would fall asleep, and I would sit in the room reading a book or doing something on my laptop.

During those times I would find myself watching him as he slept. So peaceful. Free for a short time from whatever had required a stay in hospital.

Some times I would take photos of him while he slept.

Yeovil Hospital - July 2016

St Margaret's Hospice

Frère Jacques
When Rhys was little and it was time for bed I would go with him. When he wanted me to stay with him until he fell asleep I would sing to him. Before too long we had a regular song that I would sing while stroking his head in order to relax him. Even when he was older I would sometimes sing it to him when he was struggling to go off, or his illness meant that he wanted me to stay in his room while he tried to get to sleep.

Although it started as a regular children' song I added my own verse, it went like this, the verses being sung over and over until he had dropped off.

Frère Jacques, Frère Jacques
Dormez-vous, dormez-vous?
Sonnez le matines, sonnez le matines
Ding dang dong, ding dang dong.

Little Rhys-e, Little Rhys-e
Time for bed, time for bed,
Lay your little head down, lay your little head down,
Time for sleep, time for sleep.

Rhys' Eulogy

Seventh of the first ninety-eight.

Seventh of January nineteen ninety-eight.

We’ve lost track of the number of times that Rhys uttered those phrases, or we said them.

Rhys had to deal with a lot during his life. He had Neurofibromatosis, Acute Lymphoblastic Leukaemia, a malignant nerve sheaf tumour in his stomach, a meningioma which resulted in part of his skull being removed and replaced with an acrylic implant, another nerve sheaf tumour; this time in his leg and then, as a result, tumours in his lung, mouth and finally brain.

He also suffered a major seizure some months after the operation to remove his first brain tumour.

During his life Rhys visited at least 10 different hospitals, underwent procedures and operations too numerous to count and received gallons of blood and platelet transfusions.

Rhys’ bone marrow transplant was the first time that we risked losing him. The seizure after his brain surgery was the second time. Eventually it was the mouth and second brain tumour that resulted in us losing him.

Despite all that Rhys soldiered on. I can probably count on the fingers of one hand how many times he complained, instead he dealt with everything calmly and with a smile or cheeky grin on his face.

Rhys was born on the seventh of January nineteen ninety-eight and his first few years were fairly uneventful. 

In the summer of 2000, everything changed when he was diagnosed with Acute Lymphoblastic Leukaemia. 

Despite the seriousness of his illness and the amount of time he spent in hospital we always tried to make life as normal as possible, but that would never be the case.

Rhys did so many things in his life, he had so many things he enjoyed doing and he never let the Leukaemia or tumours hold him back.

During the first weeks after he was diagnosed, and while we were still in Bristol he went, with a cannula in his hand and bandages protecting it to the zoo.

He went ten pin bowling on a Saturday morning, which was the source of our nickname Smiler for him.

He went swimming, once he had his Hickman Line removed, led to him gaining his bronze life saving certificate before he had to give up swimming due to the tumour in his stomach.

He went cycling, including taking part in several bikeathons.

He played pool, which he took every opportunity to play from the first time we stayed at CLIC House, through his many stays at Sam’s House and his brief time on Area 61 at Bristol Oncology Hospital. Something which led to his wanting to see a snooker final, something that he almost managed when he went to the World Snooker Championships in Sheffield and got a backstage tour and tickets for two of the round and quarter final sessions.

Rhys loved to cook, and made some lovely cakes for us all. He loved watching football and rugby, supporting Yeovil, Manchester United and Wales.

He loved Sci-Fi and fantasy, particularly Doctor Who, Power Rangers and Marvel and DC superheroes. Two of the last films we watched together were Guardian’s of the Galaxy Volume 2 and Wonder Woman.

Rhys had so many other experiences over the years.

Spending the morning at Yeovil Naval Air Station, getting to sit in the cockpits of several helicopters and flying the Lynx Mark 3 simulator, which resulted in him being given pilot’s wings.

Going to Barretstown in Ireland on outward bound weeks with other youngsters from around Europe with life threatening illnesses.

Being driven around Silverstone race track in a Ferrari.

After he received his terminal diagnosis he fulfilled the one wish that we’d never got around to, watching a Grand Prix. With the help of so many people who donated to a fund organised to help him achieve his final wishes he made it to Silverstone and got to see Hamilton win in style. 

The weekend was topped off with a surprise tour of the AMG Petronas team factory in Brackley. It was an amazing experience and he came home with some very special souvenirs as well as having been within touching distance of Hamilton’s car.

Even during the last weeks of his life Rhys got to experience some amazing things, Stormtroopers, owls, dogs. Life was never dull. The staff at St Margaret’s gave us the chance to spend quality time with him that we couldn’t have managed at home.

Rhys’ life was never a simple one but he made every effort to enjoy every moment of it, regardless of what he was going through. 

No matter what life threw at him though he always tried to help other whenever he could. He loved looking after the little ones, something he developed as a result of those early days in hospital. Playing with the younger kids in the playrooms often allowed their parents a chance for a few minutes break knowing that their child would be safe and sound and was being entertained. 

His experiences led him to decide that he wanted to work with children whether in a play group or as a hospital play specialist. Either of which he would have been brilliant at.

His gentleness, and the fact that he wasn’t the biggest of people, made him unthreatening to children who found him easy to get on with. It didn’t hurt that he had such a big heart, one that was filled with so much love for everyone.

His calmness and determination endeared him to everyone who met him. Rhys was the least threatening, most helpful young man you could ever meet. 

Even in his last days of life, his acceptance of his situation, and the peaceful and dignified way he dealt with everything was an incredible example. 

In the same way that Tracey and I were Rhys’s rocks, providing him with strength when he needed it, he was our rock giving us the strength to cope with everything.

Tracey and I, as well as everyone who ever knew him, have a Rhys shaped hole in our lives that nothing can fill. He won’t get the chance to do so many things now but is finally at peace and free from the cancer that affected him for most of it. He taught us so many things over the years, and even now he’s gone, his example can help us to live our lives to the full and remember that no matter what we go through we can still do amazing things.