Home Again!

Well that worked out well.
Tracey and Rhys made their way into Ward 38 for 7:30am and sat in the playroom waiting to find out if a bed was available.
After a while the anesthetist arrived and went over everything with him. They then had to wait for Mr Edwards the surgeon.
At 9 I arrived in the hospital and found them still waiting. Another family were also waiting for a bed.
Tracey nipped out to get some breakfast while Rhys and I sat there.
The play specialist arrived and began tidying the room. As Rhys is interested in becoming a play specialist in the future they chatted about what he's doing and what he needs to do to become one.
Tracey returned and it was my turn to grab some breakfast.
As I was on my way back Tracey texted me to let me know that Mr Edwards had been in and that Rhys' operation was cancelled. There were no beds available due to the hospital being bust and there being a lot of emergency admissions. It would also take a number of hours to perform Rhys' operation so it was better to cancel and reschedule.
The operation has to be performed within 30 days of being cancelled it seems and due to the amount of time needed to complete it is likely to be at least 2 weeks away.
Its frustrating for all of us. Making arrangements for time off work, rearranging appointments, arranging accommodation, traveling to and from Bristol, preparing for serious surgery and then for it not to happen.

But we're back home and just have to wait until the new appointment comes through. 

Here we go again!

Back in Bristol so that Rhys can have the operations to remove the meningioma.
What a day its been!
Tracey drove us from Yeovil to Bristol. A nice steady trip and something she'd not done before.
After having got up very early it was a race between Rhys and I to see who could doze off the quickest so that the other would have to act has "second SatNav".
Naturally the teenager won!
A short visit with Rhys' Great Uncle Bulgaria and it was time to head for the hospital.
A change of driver and it was time for me to get us across Bristol to Sam's House.
A short, and amazingly quiet drive later and we were unpacking the car and putting our things into, yes you've guessed it, Room 10. The one we've stayed in on out last few trips to Bristol (bone marrow transplant, surgery to remove the tumour and radiotherapy after the tumour had been removed).
Having unpacked we made our way into town to grab a bite to eat at Tracey's favourite pub, Rhys' too!
Lunch over Tracey and Rhys made their way to the hospital as he had an appointment for a CT scan at 3pm. I caught up with them just as he'd finished.
Returning to the X-Ray department reception we discovered the MRI scan he also needed would be delayed due to an emergency. With that in mind we decided to pop to Ward 38 where he was supposed to be admitted and see if they had a bed for him. We'd tried to confirm that there was a bed for him, something we'd done several times over the course of the day. Unfortunately we had no luck and so Rhys and I returned to the X-Ray department while Tracey waited on the ward to find out what was happening.
Rhys' scan was delayed for ages and it was after 5pm before we found ourselves in the room with the MRI scanner, Rhys inside the machines and me at the foot of it watching him.
It is a really boring experience just watching so it must be even worse if you are having the scan and have to lie perfectly still.
Prior to the scan Rhys had bloods taken. The nurse that came do them looked at us and asked if he'd been on one of the wards at Frenchay. Rhys was so little at the time that he wouldn't remember it clearly but I said "yes, to have his tonsils removed." After all these years she remembered us.
Returning to Ward 38 we sat around for some time until a nurse confirmed that there were no beds available and he would have to go to Sam's. We would have to ring the people that deal with allocation of beds at 6:30am on Thursday morning to see where they had a bed available for him.
Another early morning!
Leaving the hospital we returned to Sam's and had a bite to eat. Rhys, as he does when we stay here, disappeared to the teenagers' room to play pool, something he thoroughly enjoys doing when we are here, or at CLIC House.
Tracey spent a bit of time when we arrived at Sam's catching up with how various people were. Lots were doing OK, but as we have experienced far too many time over the years, a number have sadly passed away, their illnesses having directly been the cause or having allowed something else to do that job.
As I sit writing this the only sounds are from the various fridge/freezers, the click of pool balls hitting each other and the clunk of balls falling in pockets. Oh, and Tracey and Rhys chatting. All else is quiet.


Thursday morning update: We rung about a bed just after 6:30.  There are still no beds available, its hoped that when day surgery opens they will be able to get Rhys a bed in there. In the meantime Rhys and Tracey have to go to Ward 38 for 7:30 and wait around in the playroom until something is sorted. We think that Rhys will be going into the High Dependency Unit following surgery so he should at least have a bed there until they can sort out a bed on another ward.

So with a click of my fingers I'll sign off for now, further updates in due course.

Edited: because my proofreaders spotted two tiny mistakes. Huh!!!

Home Run

So 6 weeks of radiotherapy have come to an end. Bags and cases packed and placed in the car. Room cleared out.
Goodbyes said to all the people we've got to know, adults and youngsters alike. Staff and residents both.

One more drive from Bristol to Yeovil and its finally time to rest and to have a proper summer break before started at college.

 

We're all going to the Zoo

Bristol Zoo exactly.

Last Sunday was Tracey's birthday. She had wanted to go somewhere and as Rhys' Aunty Annette and his cousin's Jess and Charlotte were down at Nanny and Grampy's it was easy to arrange for them to come over to Bristol for the day.

An early start for us from Yeovil still saw us arrive at Sam's nearly an hour after Annette and the girls.

After unpacking and grabbing a drink we piled into the cars and headed up to Clifton and Bristol Zoo.

Although there wasn't a queue outside the zoo the car park was already full by the time we arrived and so we parked up on the Downs before walking down to the Zoo. For once we had very little trouble parking.

For such a warm day it was really surprising that there wasn't that much of a queue to get in and once in the place was busy but not overly packed.

We took our time as we weren't in a hurry and by the time we had to leave had seen just over half of the animals.

We started off with the flamingos before looking for lions, who seemed to be hiding away. Fruit bats were next before we reached the reptile house via some very big tortoises and friends.

Rhys and I went in to have a look at the snakes, frogs, lizards, crocodiles and other reptiles. Everyone else went and sat on the grass to enjoy the sunshine. Can't think why!

Now I'm sure that I'll get in trouble for the next set of pictures but there are no pictures of snakes!!!

 
After the reptile house we visited the spiders and creepy crawlies and then the aquarium.

A bit of lunch was called for so we stopped off at the cafe and grabbed a bite to eat.

The afternoon began with monkeys. Lots of monkeys.

At one point we got separated from Rhys' Aunty and cousins. While we waited for them to find us we stopped off to listen to the talk about the lemurs. It was really crowded in the enclosure and took a while to get in and out as the doors were in an airlock type configuration where you had to close on door before the other could be opened. Stops the little rascals escaping.

Our next stop was the gorilla enclosure. At the point that we reached them they were fast asleep because of the heat. When we passed through a bit later they were moving about a bit.

The last couple of stops were the penguins and seals.

The seals were wonderful. Especially the really big one that kept barking at everyone.

Eventually it was time to start making our way to the exit as we needed to leave. Before we did we stopped to get ice-cream. Rhys and I popped to an ice-cream van to get a couple of 99s (ice cream cone with a chocolate flake for those that don't know what this is).

Rhys' cousins decided when we returned that they wanted to sample our ice-creams. After allowing Jess to have a couple of licks of mine I made the mistake of handing it to her and well...

Our trip ended with a visit to the shop to buy some souvenirs but not before we paid one last visit to the lion enclosure where there was a bit more activity.

Rhys had a lovely day with Aunty Annette and the girls. The zoo wasn't crowded so was a great place to go on a hot, sunny day.

Week 3 of radiotherapy

Its been a while since we posted anything with regards to Rhys' treatment. We're now into the third week of radiotherapy.
On Monday we were set to come up to Bristol when we received a phone call from the radiographers to tell us that the machine had broken down and that they were cancelling appointments. Rhys will have another appointment added on at the end of the 6 weeks to make up for it. With an extra day in Yeovil we decided to spend it relaxing and doing some of the things we'd wanted to do like go to the cinema.
With the sun shining in the sky we headed to Cineworld to watch How To Train Your Dragon 2.
There were less than a dozen people at the showing we went to, not surprising as it was in the middle of the afternoon.
We enjoyed the film, Rhys liked it and thought it was better than the first, I prefer the first as there was more going on with the storyline in that one.
Tuesday we returned to Bristol. On arrival at the room we discovered a note to say that there had been a phone call letting us know the radiotherapy machine was fixed and we could come in for the appointment anyway. Oh well!

Last weekend was incredibly stressful and heartbreaking for the family.
On Saturday we traveled to Portsmouth as Rhys' Grampa,  Tracey's Dad, had been taken into hospital. We arrived at the hospital in the afternoon and went to his bed on the Medical Assessment Unit. Rhys spent a bit of time at the bedside in between going to the restaurant and for short walks with various close family members.
Eventually Rhys and I had to leave to check into a hotel for the night as it wasn't good for him to stay at the hospital overnight.

We rang the local Marriot, no rooms.

Then we rang Premier Inn, no rooms in Portsmouth or Petersfield but they did have a room in Aldershot, a good 30 miles from Portsmouth. Um, pass.

Finally we managed to get a room through Ibis. Since we used to live in Portsmouth and have visited there a number of times since moving to Yeovil I knew where the Ibis was. Leaving everybody else at the hospital, Rhys and I got into our car and headed south into deepest, darkest Pompey.

Pulling up at the hotel we found a parking space and went into reception.

We explained that we had a room booked and who we were. "Sorry, we've not got any reservations in that name. Could you be booked into our Ibis Budget hotel?"

Quick phone call by the receptionist and yes, we're at the wrong hotel. Back in the car and 15 minutes later we'd parked near the correct hotel and were checking in at reception.

The room was fairly basic but good enough for the two of us to get some sleep.

The following morning we checked out as early as we could and headed back to the hospital.

Tracey's Dad was still on the ward but later was moved to a private room. Rhys went in an saw him, he was quite peaceful. 

We had breakfast before settling down to wait in the reception area. Every so often I'd pop to the room to see how things were or Rhys and I would go for a walk.

Eventually just before 3pm Tracey's Dad passed away. Rhys was in reception while the rest of us were in the room. It was very dignified and he will be missed so much by all of us, especially his daughters.

Rhys has been incredibly strong. Considering everything he had been through this year with biopsies, the operation to remove the tumour, knowing he has the meningioma and now the radiotherapy, he held himself together. He was also able to give comfort to the rest of us.

The coming weeks are going to be equally stressful, emotional and painful. Hopefully Rhys will continue to find the strength from wherever he finds it to get him through them.

40 something, 50 something

Rhys has his first session of radiotherapy yesterday morning and we go to see Dr Cameron about the results of the kidney scan.

We arrived at Sam's House Sunday evening and unpacked.  As soon as he could Rhys disappeared to the teenager's room to play pool. He's certainly making himself at home there. We saw him on and off during the remainder of the night as he went exploring the place.

There are a lot of other family's staying at Sam's and we met a few of them in the kitchen/dining area on our floor. We only saw one child, which is different to last time we stayed there. There doesn't appear to be any other teenagers staying at Sam's so it looks like Rhys might have the teenager's room to himself.

Dr Cameron came to see us just before Rhys' had his radiotherapy and told us that the scan had shown that both Rhys' kidney's were working fine, one was functioning at 40 something percent and the other at 50 something. Although they can't guarantee the effect of the radiotherapy on the kidneys they will be using a lower dose and aiming to avoid one of the kidneys as much as possible.

The rest of the day the morning was spent wandering around Ikea and doing a food shop so that Rhys and Tracey have something to eat.

Tracey and Rhys went into Cabots Circus in the afternoon after I left to make my way home. Almost as soon as I'd left Rhys started to complain about a pain in his side and so Tracey and him ended up at Oncology Daybeds so that he could be checked over. A couple of samples to check for signs of infection and he was sent back to Sam's with some painkillers which has eased the pain by the time I spoke with them about 7. 

Day 2 of radiotherapy today and hopefully Rhys will pop into Area 61, the teenage cancer unit, this afternoon and join in with their discussion group so that he has something to do otherwise this could be a long 6 weeks for him.

Time to Decamp

Suitcases are packed. Food and other necessities are in bags. Time for Rhys to head to Bristol so that he can start his radiotherapy.

Last Friday we had to go up for the planning session. All 15 minutes of it.

He had to lie on the bed while they took some measurements to make sure that everything would be lined up correctly when they start. He had at least one X-ray and then it was all done.

We were a bit frustrated because we'd expected to see the doctor but that wasn't the case.

Unfortunately that means that we still don't know what the results of the kidney scan were so we have no idea what the state of Rhys' kidneys will be at the end of the 6 weeks. The radiographer was going to contact the doctor to let her know that we wanted to speak with her. We'll be chasing that up tomorrow morning.

On Friday Tracey rang up CLIC House to confirm that we had a room and let them know that we'd be picking up the keys. She got told that although we did have a room booked that had been crossed out. Some phone calls by the staff and we found out that we were in Sam's House. The same place that we stayed when Rhys had his bone marrow transplant.

One of the staff gave us a tour so that we knew where everything was. Then she showed us to our room.

And would you believe it...

we are in the exact same room that we stayed in when he had his transplant.

6 years on and we are back in the same place. At least this time he gets to be and out and about a bit more. Who knows he might even manage to see the balloon festival and not just see the balloons flying by in the morning and evening which is what we've done every other time he's been in Bristol during treatment.