Friday, 12 June 2015

I love a challenge

Its over a year now since my son was admitted to hospital in Bristol so that he could have the malignant peripheral nerve sheaf tumour removed from his stomach. At the same time the doctors there identified a second tumour, a brain tumour called a meningioma. After scans showed its size it was decided that monitoring was the best course of action, rather than surgery.

Last Autumn we paid a visit to the Children's Hospital so that he could have a full body MRI scan to check his stomach and make sure that there were no problems developing there and also to check the size of the meningioma. Due to a problem that he was having at the time with intense stomach pains the scan was aborted when one of the pains occurred and he could not continue to lie still any longer.

Earlier this year we noticed that the lump on his forehead seemed to have grown. We contacted our local hospital and after a bit of too-ing and fro-ing of messages between consultants at our local hospital and Bristol an MRI was finally performed in Yeovil. The consultant in Bristol reviewed them and confirmed that the tumour had grown and surgery was now required.

Cue a very worried me as there was the possibility that they would give us a date that would clash with my surgery in Brighton. Something that if it had happened would have meant me postponing my surgery as my son's health has always been a priority. Fortunately arranging when the surgeon would be able to operate took longer than expected so my operation happened.

This week we received a phone call from the Children's Hospital informing us that the operation has been scheduled for next week, Thursday in fact, with him being admitted to the hospital on the Wednesday.

When we've discussed the surgery in the past the doctors have said he will be in for about a week. As my wife says though "this is Rhys we're talking about" so who knows how long it will actually be. I'm going to be positive and work on the fact that he's admitted on Wednesday so by the following Wednesday he should be discharged and going home.

So here is where the challenge comes in.

We've got to stay in Bristol for a week. Accommodation has been sorted and as on the last few stays we are going to be at Sam's House, and in the very same room that we stayed in when he had his bone marrow transplant and also the tumour removed last year, along with the radiotherapy over the summer.

Normally none of this would be an issue, however, I've not driven since before my operation and my wife does not want to drive through Bristol so at some point on Sunday when they return from a few days away (Rhys was offered the chance to go to Silverstone race track and to be driven around in a Ferrari, something he is doing today), I will have to  get in the car and try performing an emergency stop. If I can perform an emergency stop without it being painful then I'll need to take the car out for a short drive to make doubly sure that I will be able to get us across the city. The earliest I should be driving according to my diary is the 30th July, so to get us to and from the hospital means trying to drive over two weeks earlier than that.

And then we have the other challenges.

Since I've come out of my housebound recovery phase I've not gone very far, in fact I was told short walks or car trips. Being in Bristol for a week, unless I sit around Sam's House or the hospital then I'm going to have to go for wanders into the shopping area in order to pass the time. This will involve a lot more walking than I would have done at home. All I can really do is try my best to take things easy, listen to my body and when it says rest, do just that.

I'm also still on a 3 times daily dilation schedule. According to the dates I'd worked out and marked in my diary the earliest I can switch to twice daily dilation is the 23rd June, the day before I expect us to come home. On the day that we go up to Bristol, and the day of his operation there is very little chance that I'm going to be able to dilate 3 times. On the Wednesday I'm only going to be able to manage once. On the Thursday I might be able to manage 3 times but that will depend on when his operation is and how long it takes. If its anything like when he had his tumour removed there's a distinct possibility that I might only manage once. I'm sure that it wont be an issue though as I'll be able to fit in the required dilation on the days after that, and I'll just carry on with 3 times daily after the date I can drop to twice daily for a little bit longer to make up for it.

Next week is really going to be a challenge.

It would have been even if it was just my son having the tumour removed.

It would have been even if it was just me completing my dilation schedule.

It would have been even if it was just us going away for a week.

Now its going to be so much more of a challenge.

As the expression says "May you live in interesting times" and my family and I certainly do that.

To finish off here is the second of the playlists I'm going to be adding to my posts, only another 4 to go. I'll leave you with these great songs and drag myself back to bed, its nearly 5am here and I've been up for an hour because I'm still not sleeping properly and my body seems for some reason to have decided that I need to be awake at 12:30 and 3:30am, which should be lots of fun next week. Night night.

Daydream - The Lovin' Spoonful

What A Wonderful World - Louis Armstrong

If Paradise is Half as Nice - The Amen Corner

Smoke Gets In Your Eyes - The Platters

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