A long, long, long day.

Up by 6am, out the door by 7am. Stuck in Glastonbury traffic by 7:30. Bliss!

That was Wednesday morning.

Fortunately we managed to get passed Shepton Mallet with its very long traffic queues and managed to make good time on the rest of our journey, arriving at the vascular clinic at Bristol Royal Infirmary with literally minutes to spare for the 9:15 appointment.

The last time we'd gone up to Bristol for an appointment we'd left at 7:30 and got to the hospital on time but with the chance to park at Cabot's Circus. Allowing an extra half an hour would be a good idea we thought and it turned out it was.

After our mad rush from the car park to the clinic we found ourselves sitting around for half an hour waiting for the doctor. With a CT Scan planned for 10am and a long walk to get to the Oncology hospital we knew we'd not be able to wait any longer so told the nurse we'd have to go. Of course she couldn't allow us to do that without the doctor's permission so we found ourselves waiting while she checked only for her to return and usher us into the doctor.

Well he was brilliant and really friendly. He examined Rhys' feet which is the reason we were there, found a strong pulse but also noted the difference in temperature. After a few more questions he told Rhys that he would arrange for a repeat of an ultrasound that Yeovil hospital had performed but this time to be done in Bristol while he is up there having his radiotherapy. Just to give Rhys something to do. He also explained that Rhys could be suffering from something called Raynaud's which affects the circulation in the hands and feet. Mr A to Z Medical Dictionary ticks off another condition!

Leaving the vascular clinic we made our way through the maze of corridors inside the BRI and arrived at the oncology hospital. Rhys' CT scan went well and he emerged from the scanner room with a series of tattoos on his stomach to allow them line up the machines when he has his radiotherapy. It was a bit disappointing that the tattoo was only tiny dots and not the full blown bowling ball and pin that we told Nanny about afterwards but you can't have everything.

After the scan Jax took Rhys up to the teenage oncology unit Area 61 and showed him around. When he's having his radiotherapy he will have access to the unit and be able to join in the activities that are put on there. If there was any worry about him spending lots of time at CLIC House playing pool then those doubts disappeared when we saw the unit. I suspect that he will be spending a lot of time there, especially since they have a table football game and a pool table. I'm beginning to think he might not want to come back home to Yeovil with all of this to look forward to.

Lunch followed at Mum's favourite pub, the Bay Horse with Rhys choosing a rather tasty burger and chips.

The trip back was a lot easier as we bypassed Glastonbury by using the motorway. It was a long day and very tiring but things are finally moving getting towards the last stages of his treatment so that he can enjoy a couple of weeks recovering from the radiotherapy before his next big adventure, college.

And so it begins ...

Well the news we've been waiting for has finally arrived.
On Wednesday Rhys will be having another CT scan in preparation for starting his radiotherapy.
On July 4th, yes Independence Day in the USA, he has a radiotherapy planning appointment in Bristol and then on the 7th July will be starting his radiotherapy.
6 weeks of being zapped for a couple of minutes and several hours of playing pool each Monday to Friday.
Weekends will be spent back in Yeovil doing those things he normally does.
The 6 weeks ends just in time for him to have a couple of weeks to recover in time for the start of college.

I think he's looking forward to his time in Bristol. If the excited yelling and shouting "we're going to Bristol, we're going to Bristol" that was going on in the background when Tracey rang to let me know the news is anything to go by.

Oops

Apparently Rhys was supposed to be in Bristol today having his kidney scan, or so the phone call this afternoon to ask us why we'd not turned up for the appointment told us.
Nothing was on the calender, nothing in diaries and no letter pinned to the noticeboard in the kitchen.

We couldn't think why we'd not heard about this appointment. Then the light went on.

While Rhys was in hospital recovering from his tumour operation and we were waiting for the results of the tests on the tumour to see if they'd got everything we had received a phone call asking us to go and see the radiotherapy consultant. We'd been puzzled by that as we'd not been told that the results had come back. At the same time we received a letter notifying us that Rhys had an appointment for a renal scan.

The letter was taken up to Bristol and we asked the nurses if they could find out why he had the appointment. We never heard any more and never saw the letter again either.

It would appear that once again the NHS was being super efficient as the letter must have been the appointment for Rhys' kidney scan which the doctors had figured out he'd need before radiotherapy could begin. This must have all been sorted out before we'd been told that he'd need radiotherapy. Not knowing what was happening at the time we dismissed the appointment as someone getting dates wrong for one of the numerous scans that he was having at the time. We know better know!

Still its not a total disaster as we have a new appointment next week and hopefully this can be combined with some of the other activities that will be needed as part of the planning for his treatment.

And the future unveils itself

Today Rhys had an appointment at Yeovil hospital with Steve the consultant from Bristol that has been dealing with him and his tumours. As a result we have a clear idea of what the immediate future holds.

As the lump on his head is a meningioma there isn't an urgency to deal with it. In fact the plan for treating that is to leave it alone and just monitor it. No surgery and no radiotherapy at the moment unless further scans show that it has grown. If that is the case then it will require radiotherapy rather than surgery as the latter would require the removal of a sizeable chunk of his forehead during the operation (probably for the best really as I'm sure the temptation to ask if they could replace it with something transparent so we can make sure that his brain is still there and working at times would  be far too much to resist).

The other lumps that they found inside his cheeks, the different scans he had showed things on different sides of the face and not on the same side, will also be monitored but aren't worrying anyone at the moment.

Which leaves us with the radiotherapy on his abdomen. Once he's had a kidney scan to check which of his kidneys is the best to not nuke during treatment Rhys will be beginning his 6 weeks of radiotherapy in Bristol. With luck everything, apart from the monitoring, will be done and dusted by the August so that he has a few weeks to recuperate before beginning college.

We chatted about a few other things but the most important of these is that Rhys was given the all clear to go ten pin bowling, although they didn't say that he'd be able to play brilliantly but you can't have everything!

And the results are in

Yesterday we received a call from Father Christmas to tell us that the results of the biopsy were back. Why Father Christmas? Well the news was the best present we could have.

The biopsy showed that the lump on his head is a meningioma as we'd been told at first and not something worse which is what the doctors were worried it night be.

This means that we are back on track with the treatment as the radiotherapy can now go ahead. Treatment of the lump will still be needed but that can happen after the remains of the tumour in his abdomen have been dealt with. So we are looking forward to another trip to Bristol for some more scans and then Rhys can have the radiotherapy.

Once the radiotherapy is over then Rhys will have to have the lump removed and possibly some radiotherapy on his head but that it weeks away at the moment.


A little voice has just called out from their room to tell me to let you know that he's had to pop into hospital this week for some more tests to try and figure out why he's having some pains. This is something he's had for a couple of weeks now but yesterday morning also resulted in stomach pain that resulted in his sleeping on the couch from 4:30am to 8:30am because he wasn't able to sleep lying flat in bed.
The same little voice has also pointed out that he's ticked off another meal from his list. He had his chicken tikka masala yesterday evening.