Timeline (January - June 2017)

Having created this blog I think a bit of background of how I reached the point of needing it would be useful. With that in mind here is a timeline of the last 2 years.

January 2017

We had a couple of appointments at the during the month, but I'm not sure whether they were both for me, although I suspect one of them included a check up for Rhys.
On the 18th we were at the Bristol Royal Infirmary. This would have been an appointment for Rhys but whether as a follow up for previous surgery or preparation for his upcoming lung operation I can't remember. It was an appointment where we noticed some moles on his body that we hadn't seen before.
On the 26th we went to see Chitty Chitty Bang Bang at the Hippodrome.

February 2017

The start of the month was spent in Bristol. Tracey and I stayed at CLIC House and travelled to and from Southmead hospital where Rhys was recuperating from the operation to remove a wedge of lung and the tumour that had been spotted growing there during a chcek-up at the end of 2016.

Towards the end of the month we saw a dermatolgist at Yeovil Hospital so that they could check out the moles on Rhys' body. The decision was made not to do anything with them but to keep and eye on them and if they changed appearance to act then.

March 2017

For a couple of years Rhys had been under the care of a Neurofibromatosis consultant in Plymouth. An appointment had come through for a check-up. While we were there it was suggested that Rhys might want to be referred to a hospital in London where they could keep him abreast of anything that might be of use to him. By the time Rhys got an appointment in the post, there was no longer any point to going.

At the end of March were once again in Bristol, this time at the Dental Hospital so that they could do a biopsy on the lump that was clearly developing inside his mouth. This proved to be one of those light-hearted times because, after carefully managing to excise a piece of the tumour, the dentist managed to get it to close to the suction tube and with a "phew" noise, the tissue was sucked away.

April 2017

April saw my 50th birthday. To celebrate Tracey, Rhys and I went to Bristol for the day and visited the SS Great Britain before going to TGI Friday's for a meal.
While we were on the SS Great Britain I received a phone call from the Dental Hospital asking us to go back in the following day for a second biopsy, because there hadn't been enough of a sample following the first ne.
About 2 weeks later we were at Bristol Oncology hospital talking to one of the consultants about the test results. It was confirmed that it was a tumour and the proposed treatment was outlined. Radiotherapy followed by surgery to remove the tumour and then facial reconstruction surgery to replace the part of the jaw bone that would have to be removed.
Before we left I had a private word with the consultant and it was at this point I learned that if the treatment didn't work there was nothing else they could do. If the treatment failed then Rhys had no more than two years left.
We did have some good news that day. After so long trying to get Rhys to put weight on, and it really was  a hard task with high calorie diets, the use of nasal gastric feeding tubes and high calorie milk based drinks, he had finally reached a weight of 6 stone 13lbs. The most he'd weighed in a long, long time.
One week later we were in Taunton where Rhys underwent a PET scan so that everybody knew exactly what we were dealing with.

May 2017

On the 4th we travelled up to Bristol for some appointments, incuding one at the Eye Hospital for Tracey.=. Arrving early we went to Sam's House, a place run by CLIC Sargent, where we'd stayed many times in the past and where Tracey and Rhys would be staying for the duration of his radiotherapy.
While talking to Sharon, the manager at Sam's, Rhys began to get a glazed look about him and wouldn't respond when we talked to him. After a couple of minutes he was OK. With plenty of time before his appointment at the hospital we decided to go and get him checked out. By the time we saw one of the nurses from the Oncology team, Rhys had experienced at least a further two of these episodes.
We soon found ourselves on the Acute Oncology ward.
Tracey had an appointment at the Eye Hospital and so while she went there Rhys and I stayed on the Acute ward. By the time the doctors were able to prescribe Rhys some medication, he had suffered from between 10 and 12 further self-terminating fits. That evening I left Rhys and Tracey in Bristol and went home. The following day he was scheduled to have a scane to see if they could figure out what was causing the scans. They did and the following day I drove back to Bristol where we were told that they had found two, very small tumours on his brain. There was nothing that could be done for these tumours and so his care from this point on would be palliative. There was no point to putting him through major surgery for the tumour in his mouth and the recuperation he would have to go through afterwards. Quality of life was the important thing now, not quantity.
Radiotherapy would still happen but only two weeks of it, not the full 6 weeks that had been planned.
Rhys didn't understand what the consultant was telling us, Tracey and I both understood that we would only have our baby boy for a little while longer. Rather than watching him grow up and have a life, we would be celebrating his life through his funeral.

June 2017

While Rhys was having his radiotherapy in Bristol we had decided that he needed to know that his cancer was terminal and that he only had a while left to live. We had that conversation in the presence of three nurses that Rhys knew, two of whom he'd known for many years.
Rhys took the news exceptionally well, something he was very good at doing.
As the days passed it became clear that we would have to make arrangements for a funeral and that while it was still possible for him to do it, Rhys needed to make decisions about what he wanted.
Having gone through the funerals for both my parents in the previous years, Dad's being at the end of 2016, I knew how important it was to know somebody's wishes. So with that in mind Tracey, Rhys and I made an appointment at Wakely's in Yeovil and on the 20th were sat in a room while Matt, the funeral director talked with Rhys about his interests and the sort of things he liked. As a result of the conversation we had ideas about what the theme for his funeral would be and what his coffin my look like.
The weekend after this meeting we were in the Cotswolds so that Rhys could see one of his Great Uncles and Aunties and one of their sons.

From the moment that we knew Rhys was terminally ill there was a determination to make the most of every moment we had, to make as many memories as we could. Trips were planned and done. We went to London for a weekend and saw School of Rock. We visited Buckingham Palace, went on the London Eye, wandered around the Sea Life Museum. Everything we could do to make the weekend as full and memorable as possible.

Friends organised a concert at church which raised funds to help us fulfill whatever Rhys wanted to do. Another friend set up a fund raising page. Everybody tried to help, in whatever way they could, but Rhys was getting worse and we weren't sure how long we'd have him for. Would he be alive long enough, and would he be well enough to go to the British Grand Prix in July.

It was a tense time for everyone.

Outing the Past: LGBT History Festival

Taunton library are holding a LGBT History Festival on the 2nd February 2019. There will be a lot of events held during the day but one in particular has caused some fuss.

At some point there is going to be an appearance by Drag Queen Storytime, and some people haven't been happy about it.

Why?

This isn't an attempt to indoctrinate children using fairy tales. Maybe some of the stories will be alternatives to the ones you'd normally expect. Perhaps the Damsel in Distress or the Princess doesn't need the help of a knight in shining armour or Prince Charming because they are self confident and an ass kicking superwoman. Perhaps the tough as nails hero has a softer side to them.

If you aren't happy with that then try reading some of the original fairy tales, go and read some of the original Brothers Grimm stories and see how they really end. Not quite as happy ever after as you might think.

Children need to have their imaginations fed. They need to be taught that they can do anything5, be anything.

Girls can be powerful, boys can have a softer side, just like girls can be all sugar and spice and boys puppy dogs tails.

Fire a child's imagination and they will believe that they can be anything, if they couldn't then you wouldn't have male fashion designers and women engineers, people who are the top of their fields.

Telling a child a story isn't going to cause girls to want to be boys and vice versa. Telling them stories will help them to believe that anything is possible. And that's a world we really need right now. A world where our children can believe that they can do anything, even bring us back from the point of destroying the planet.

What if one of the children that attend a session like this is the one that comes up with an idea to combat global warming, or a way to stop us polluting the planet with plastic; a way that every human can get behind, or even stops world hunger. What if those children didn't believe that their idea wasn't possible because we stunted their imagination by telling them that it's wrong to listen to some people telling stories.

For most of the children attending an event like this, it will be a 5 minute wonder. They'll talk about it for a little while because it's different but then something else will come along to catch their attention. Others might talk about it for longer, maybe even remember it all their lives. One thing is for certain, for the parents of these children it will be something that they remember all their lives, and memories are precious because sometimes that's all you have left.

During Rhys' life he had amazing experiences. He got to fly in a helicopter and planes. He got to spend the best part of a day at Yeovilton Naval Air Station having a tour and flying the Lynx flight simulator. He even received flight wings afterwards.

He went skiing, visited Paris. Went to activity weeks in Ireland and made new friends.

Rhys was driven around Silverstone in a sports car, went to the World Snooker Championships and saw behind the scenes. He saw the British Grand Prix and had a tour of the Mercedes Petronas facility where they design, build and help race the Formula 1 cars.

He even got to meet Stormtroopers and handle owls.

Those are just some of the things he got to do, some of the things that Tracey and I have memories of.

None of those experiences influenced what he want to be in life. Rhys loved children, and children loved him. All he wanted to do was to work with children, whether as a childcare assistant or as a hospital Play Specialist.

What would his life have been like, or what memories would be have, if we'd told him that something he wanted to do was wrong, was dangerous, or he couldn't go somewhere without us.

It would be boring and sad, filled with sickness, hospitals and operations. We have enough of those memories anyway.

Memories of him crying in pain because an epidural had failed and the pain was unbearable for hours until the doctors were able to administer suitable pain relief.

Memories of him throwing up because he couldn't keep food down.

Memories of him lying in recovery rooms because he'd had surgery.

Memories of him undergoing treatment that he might not survive.

Memories of him having a seizure at 3am and sitting by his side, as fluid gushed out of his mouth, and I talked to him, telling him to hang on, telling him not to leave me, not to die.

Memories of those last few weeks in the hospice.

Memories of those last days when I prayed to God for a miracle. A miracle that never came.

Memories of him in his coffin at the funeral parlour.

Memories of his coffin, his funeral, the floral tributes.

People sharing their memories of him and how inspirational they had been to him.

So many memories that could define his life and how we see it, but all out weighed by the memories of all the good things, of the fun times. Of the love and laughter. Of seeing his eyes light up and his imagination burst out in all sorts of ways.

So when you worry that children are going to be influenced by the experience of hearing story time told by a Drag Queen, then think of what it would be like if, God forbid, you ever found yourself in the position of only having memories of your child and the things that they experienced in life.

For those parents who are in that position, memories are all they have, and it's the good ones you want to cling to.

So let the children enjoy an innocent time, listening to stories. Stories you can always sit down with them and read traditional versions of, or versions that suit your beliefs and attitudes afterwards.

And if they are not your children, well, let their parents decide what is right for them, not you, because it might just be that this is a memory that one of those parents might just end up having to cherish forever, because their child is no longer with them.

Ups and Downs

Today has been a tiring one. A day of ups and downs.

I got up around 6:30 this morning because I needed to get to the gym.

One of the ways that I've being dealing with losing Rhys has been sport.

Just before Rhys died I promised him that last year I would completed the London Marathon and every one of the Outlaw triathlons. I managed to keep the first pat of that promise and got around the London Marathon in six and a half hours. A lack of training and one of the hotest race days on record didn't help but I crossed the line. And so did Rhys.

After Rhys died we kept some of the ashes from his cremation and had jewellery made containing some of his ashes. As I ran round London I was wearing the pendant I have with his ashes. Wearing it gave me the strength I needed to keep going, and after I saw Tracey, my sister Annette and her daighters Jess and Charlotte at around mile 22, I found the energy to get me and Rhys to the finishing line. Shedding many tears as I did.

The other races simply fell apart after I crashed out on the bike leg of the first Outlaw triathlon I did. The other races just didn't happen and it's what led to me crashing and burning last year, what led to me asking one of the GPs at my doctors' surgery for anti-depressants, what led to me handing over a large number of painkillers that I'd planned to take, and what led to me seeking bereavement counselling.

Around September/October last year I decided I was going to try again with the triathlons and sought out a coach. The only way I was going to achieve my aim was if I had someone to hold me accountable with my training.

And it's worked.

As my training has progressed it's become more and more consistent. I still have a long way to go, but I'm confident that I'll get through the 4 middle distance triathlons I've entered this year and then be in a good position to retry all of the Outlaw triathlons in 2020.

So this morning found me at the gym undertaking a Functional Threshold Power bike test. 20 minutes warm up then 20 minutes of seriously hard work.

But finishing it and seeing that I'd improved, even if only a little bit made it all worth while.

The rest of the day has been tiring. I lay on the bed for 2 hours after having a shower, and dozed off for most of that.

But my mood was positive and I felt really good.

Yesterday, I finished a project I started, just after Rhys died, and finally ordered a proof copy of a photo book I'd been developing. A book that told the story of his last months.

So my mood has been really positive.

Tonight though, a combination of red wine and a few other things have started me coming down from that high. It's the silly things that are the worst. You know that they don't mean anything but they still hit you harder than you expect, still cause you to feel sad and depressed.

And sad and depressed is something that is very easy to feel, when you've lost a child and the pain is still raw.

The small things are the ones that trigger the tears. Like finding Rhys' diary and finding some of the things he'd written in it, or finding items that belonged to him that suddenly bring back memories, which start tears flowing.

At New Year I had to drive up to my sister's in Northampton to take some of the Christmas presents they couldn't fit in their car to them. It's a trip I've done many times over the years.

This time, though, was the first time I'd been up there since Rhys died. The last time I was driving along that road was when we went to Silverstone for the British Grand Prix, and then afterwards to the Mercedes Petronas factory at Brackley so that Rhys could have a tour of the facilities. Driving through the area, tears poured from my eyes and the sadness hit me hard.

Even though it's nearly 18 months since Rhys died there are still going to be firsts that I find myself doing, and the pain will hit me, and the tears will flow once again.

Tomorrow is another day, and I'll get out of bed, make Tracey a cup of tea, see her off to work and then get ready for work myself. If I'm lucky it will be a good day, if I'm not then it will be another day where I take a deep breath before I walk out the front door to face the world, another day where I plaster on a smile and drag myself through it until I get home, have food, and am able to go to bed and close my eyes and put the waking nightmare that is losing my son behind me for a few hours of blissful unconsciousness.

Becoming vulnerable

My recent bereavement counselling session highlighted that I have a tendency to talk about events in a way that doesn't reveal the true depth of the emotions that I was experiencing. I've built up walls, or surrounded myself with a suit of armour as a way to avoid being vulnerable.

Although that can be a good thing, it can also mean that when things get really bad, I don't have ways, and don't allow myself, to reach out; to allow myself to be vulernable; to get the help I need. Instead I let things get progressively worse until I reach the point where all I can see is suicide as a way out and then reach out to get help.

Not a good situation to be in because one of these days I won't reach out and, well you can guess the end result...

So why can't I allow myself to be vulnerable, why can't I take off the armour? How do I change that?

For me being vulnerable, opening myself up to people is an incredibly scary thing to do. It means opening myself up to the possibility of hurt and pain, and that is something I find difficult.

In the past I've allowed myself to let people get close to me. I've let my barriers down and they've let me down. The loss of trust is bad enough but the fact that I've opened myself up, let myself be vulnerable, shared parts of me with people; only to find those parts rejected or to find that people were dealing with those parts by treating things as a game. That leaves scars and makes you build up the walls more securely.

Rhys broke through those walls the moment I first set eyes on him. He was my life, he filled my world with love, fun and laughter. Watching what he went through during his life, seeing him in pain, sick, unable to eat, everything that the Leukaemia and tumours inflicted on him, that hurt so much.

It also strengthened the walls I'd built up because I needed to hide that hurt away. I needed to block it off so that I could focus all my strength on Rhys and Tracey. I needed to make sure that they were able to get through everything, and the only way I could do that was to become the rock that anchored us all no matter what. To be the calm in the storm.

From the first moment I knew that there was a chance of Rhys dying I had to hide that knowledge away. I kept that possibility from Tracey and Rhys until we eventually found out for definite that there was nothing further the doctors could do for him and he was given the terminal diagnosis.

Finding out that he was going to die broke through the barriers I had put up and I found myself crying on so many occasions, but the barriers were still there. I kept my tears to myself as much as I could, crying in the car or the shower, or when I was with the hospice nurses and Tracey and Rhys weren't with me.

Today, one of the journals I fill in each day asked the question, "What makes 'me' me"?

In the past I could have reeled off a list of thing. I'm a parent, I'm a triathlete, I'm a burlesque dancer, a photographer, spouse, aunty, so many different things. I'm still most of those but they are things I do, people I'm related to, and they all go towards to describing me, but they aren't necessarily 'me'.

Photoshoot at Clifton Photographic

Crossing the line with Rhys at Outlaw Half: Nottingham

Chilling the day before the Bala Middle Distance

Photoshoot at Khandie Photography

Photoshoot at Khandie Photography

I could take up different hobbies and people would describe me by those, but the core of who I, what makes me 'me', that wouldn't change.With the loss of Rhys I'm faced with figuring out who I actually am, and that is scary because I don't know if I'll like the answer, but I have to work it out.

Finding out who I am means opening myself up, taking down the walls, or as my counsellor suggested "at least making a door in them". It means becoming vulnerable and that is something that I don't know how to do.

For some time I've been following Brene Brown on Facebook. Last week I bought two of her books. I'm reading the first, "Daring Greatly". As I read it I hope I'll find ideas for how to be more open, more vulnerable, and to take the first steps on that journey to discover who I really am, now that Rhys has died.

Who was Rhys? Part 2

I recently found a USB flash drive with some things that Rhys had produced while at school. There was something that he'd written in 2007 which is a good place to start the next bit of his story.

The Day I Surprised My Dad And Mum

Two years ago on my Mum’s birthday I surprised my mum and dad by having Leukaemia. I went into hospital on the Tuesday with mum and dad and we saw the doctor, she said you will have to go up to Bristol for medicine to make you better.

Then on the Wednesday we went up to Bristol in an ambulance. The ambulance went the wrong way but my dad kept to the path. when we got there I went up to ward 34 and they put me on a bed.

What was a bigger surprise was they kept me in for 6 months. 

In 2003 Rhys finished treatment for his Acute Lymphoblastic Leukaemia. Life could get back to the sort of normality that lots of other families enjoy.

Rhys was enjoying primary school and we were enjoying a life that didn't revolve around hospitals. 

We had 18 months of that before Rhys started complaining that his arm hurt. We weren't overly concerned at the time but asked the medical team at the hospital that had looked after him if it was possible to get him checked over. Tests were performed and before we knew it we were being told that he had relapsed and the A.L.L was back.    

                                       

As Rhys described we found ourselves heading to Bristol once more. This time our stay was a lot longer because the doctors decided that they wanted to give him a more aggressive treatment, and the best way to do that was for him to spend the time in Bristol because he would be having cranial radiotherapy in addition to chemotherapy.

We were lucky because we were able to get a room at CLIC House, which is about 15 to 20 minutes walk from the Children's Hospital. At one point we found ourselves using the flat attached to the house. It was during that time Rhys first raised the possibility of dying.

No parent wants to think that their child is going to die before them, no parent ever should have to have those thoughts. Neither should a parent have to have a conversation with their child about why they think they might die. I found myself having that conversation with Rhys one weekend when I was staying with him.

It was a short conversation because Rhys' response to my asking him why he thought he might die, had someone said something to him for instance,  was "I don't know, it just popped in to my head".

Not wanting him to fixate on the idea we quietly left the subject drop and it was never raised again, at least not for another 12 years.

The 6 month stay finally ended in December 2005, allowing us enough time to pack everything up in Bristol and head home for Christmas.

The treatment protocol at the time for boys that had relapsed was two years of treatment so we once again found ourselves in the routine of daily medication regular blood tests, and those all important visits to the hospital, whether for check-ups, lumber punctures or short stays while the doctors pumped Rhys full of anti-biotics and other drugs to combat whatever infection or illness he'd picked up.

In 2007 we reached the two year milestone and treatment once again ended, but life wasn't to return to normal.

Within months of having completed treatment Rhys was having excruciating headaches. He would sometimes go to bed at night with  headache and wake up the following morning with the same one or another one. Some mornings they were so bad he couldn't get out of bed and we just had to leave him go back to sleep, ringing the school to inform them that he wouldn't be in.

Over the following months we explored every route to try and figure out what was causing the headaches. We went to the optician to have his eyes tested. We had appointments at the hospital ophthalmology department but this didn't show anything. Eventually his consultant in Bristol suggested a lumbar puncture for completeness, because the chances of it being the Leukaemia were incredibly slim due to the length of time since he'd finished treatment.

A trip to Bristol followed and Rhys underwent yet another lumbar puncture.

It wasn't long before we were back in Bristol to hear the results and they weren't what we wanted to hear. Rhys had relapsed once again.

His consultant explained to us that there were only two options, either he underwent a bone marrow transplant or we went home and it would just be a matter of time before the cancer claimed him. We did what any parent would do and choose the option that gave him a fighting chance, not a huge one. As we were told at the time, Rhys was unique. He had Neurofibromatosis. He had A.L.L, and was about to embark on his third batch of treatment. The hospital had not dealt with another child with that same history.  Rhys' chances of survival were around 20%.

From May until September of 2008 Rhys and us found ourselves in Bristol on the Bone Marrow Unit while his body was battered with radiotherapy and chemotherapy to destroy his bone marrow before it was allowed to rebuild itself thanks to bone marrow from a anonymous woman donor from the USA.

I won't describe that time in detail here because I wrote about it extensively at the time on a blog we set up for that specific purpose. That blog can be found here.

Who was Rhys?

With a blog called Surviving Rhys I should explain who he was.

Ieuan Rhys Powell, to give him his full name but everyone called him by his middle name because it was easier to say, was born on the 7th January 1998 at 12:16pm in Yeovil Maternity Hospital.

He weighed 7lb 14oz on arrival and was a decent 55cm in length, with a head circumference of 33.3cm. I still have all these little details written down.

Rhys was about a month premature because his Mum (see footnote below) had been suffering from pre-eclampsyia, which had meant a number of stays in hospital during the previous weeks. Fortunately we weren't in hospital on Christmas Day, but Boxing Day ended up being another matter, as did New Year's Eve.

After he was born, Rhys spent the first days of his life in the baby Intensive Care Unit before spending a few weeks in the flat on the maternity ward. A time that still brings back memories of nurses knocking on the door and asking what was cooking because it smelled delicious, it was a casserole, and, on another occasion, trying to walk the length of the ward while hiding wet jeans due to a nappy failure while he was sitting on my lap.

With that start in life it was no surprise that he was going to make our lives interesting.

Between his first Christmas and New Year, he developed a case of bronchitis, which resulted in us making a visit to the hospital in Cheltenham to get him checked over. We'd been staying with my in-laws in the Cotswolds at the time and were heading to Wales to stay with my parents over New Year.

In the summer of 2000, Rhys was diagnosed with Acute Lymphoblastic Leukaemia (ALL).

A few months before he was diagnosed we had gone away for the weekend to a wedding, leaving Rhys with my parents. The week after I was away on a training course and received a phone call from his Mum to say that he'd been limping and didn't want to walk, just wanted to be carried. They were taking him to the doctors.

The doctor suggested that he might have pulled a muscle or something similar and it wasn't unusual, if it didn't improve in a few days then they should take him back so they could take another look at him.Within a couple of days he was OK again.

In July, his legs hurt and we took him to the doctors who suggested that we monitor him and if it got worse take him to the hospital. That same evening we were in A&E waiting to see a paediatrician.

When she eventually arrvied we talked and she told us that she didn't like the colour on him, he was far too pale compared to his Mum and I, and she wanted to do some blood tests. We could either go home and come back in the following day, or she could admit him and they could do the blood tests on the children's ward that evening. We opted for the latter.

Once was safely on the ward in bed, and bloods had been taken, I left him and his Mum and went home.

Back then we had dial up Internet at home, which meant that when you were using it people couldn't phone you. At around midnight, the front door burst open and Rhys' Mum came in. I was needed back at the hospital because the blood results had come back and the paediatric consultant on duty wanted to talk to us about them.

Throwing on some clothes, we headed back to the hospital and shortly were sat in a room with the consultant who told us that Rhys had ALL. The shock was so much that it was all I could do to stop myself from laughing.

The doctor explained about the disease and what the immediate plan of action was. Rhys would be tranferred by ambulance to cancer ward at Bristol Children's Hospital.

Waiting until Rhys was being taken to the ambulance, I headed home and packed some bags for a few days, then drove up to Bristol and the hospital; arrving just as the ambulance crew were leaving.

The next couple of weeks were a whirlwind as Rhys began treatment and we tried to arrange for him to be transferred back to Yeovil where his treatment could be continued by the doctors and nurses there, under the supervision of the team at Bristol.

There were memorable times for him while staying in Bristol during those early days.

We saw the hot air balloons flying passed early morning when they took off from the balloon fiesta.

Rhys was allowed out of hospital and went to the zoo.

Months of intensive treatment followed before Rhys was deemed to be in remission and was switched to the maintenance treatment that would last for the next three years.

In 2003, Rhys finally came off treatment and our family life could get back to something that resembled other people's.

But the story doesn't end there and I'll continue with what happened next in another post.


Footnote:
I've mentioned Rhys' Mum in the post, by that I mean his biological mum, the person that gave birth to him and spent the majority of the time at hospital with him. Throughout his life I was the main bread winner and so had to go to work. Even so, when he was in hospital in Yeovil I spent as much time as I could, when not working, at the hospital with him.

When he was having treatment in Bristol  for extended periods and I couldn't be there with him because I had to work I would drive him and his Mum to Bristol, drive up and back during the week to visit overnight, and then go back up to pick them up at the end of the week, either to stay the weekend or to bring them home for the weekend.

Introduction

On September 11th 2017 my world came crashing down.
The journey that started on the 7th January 1998, and took a turn for the worst in the summer of 2000 finally came to and end, and a new one began.

On that day in September my son, Rhys, passed away quietly at St Margaret's Hospice in Yeovil. He was only 19.

Next Monday would have been his 21st birthday.

The last year has been far from easy for any of us. For me, well I lost my wingman and although I tried to cope, I was just a hair's breath from crashing, which I did both metaphorically and physically.

This blog is my way to explore both journeys in the hope that it will help me to make sense of things, as well as to work through some of the things that bereavement counselling is bringing up.

Happy 21st birthday Ieuan Rhys, my little man.