Chester40 Posted October 4, 2017 Share Posted October 4, 2017 Best wishes. Sounds like every time you getting through one panic and catch a break, you get hit by another wave. Hope you get some good news and the thought people are rooting for you offered you some mental energy. Link to comment Share on other sites More sharing options...
Coneheadjohn Posted October 4, 2017 Author Share Posted October 4, 2017 Strange day today,almost 2 years exactly since we started at Birmingham after Mr Ray sent us we're sat back in his office,anyway I'll try and get to the nitty gritty which is probably as we expected. Joel's health problems at the minute are all down to years of being ill and years of surgery,nothing they can do about that. We've sat and had a good look at his MRI scans and that has helped us get a good understanding of what Joel has had done. The left side of his head is unbelievable when you look at it from the different angles. The conclusion being that Mr Irving has drilled so far in and drilled so much bone out that there is nothing left to take out,you always have to take a bit extra out around the disease to prevent leaving any cells in.This isn't unexpected but having been able to see it makes us realise the situation fully. Scan clear at the minute,if disease returns it will be untreatable. Joel will have a routine scan January then every 6 months if clear.If he becomes unwell and his issues with either ear he will go straight in and be scanned. That's it really,just taking it in. Link to comment Share on other sites More sharing options...
Chester40 Posted October 4, 2017 Share Posted October 4, 2017 Well you don't have a decision to make..which can sometimes give you some semblance of clarity and peace. The scan was clear. So you can be happy. There is nothing to be done except be glad he's free to enjoy himself. Enjoy today and tomorrow..and the day after.., hoping there's no bad news...a good lesson for all of us there I think! All the bestate. Link to comment Share on other sites More sharing options...
King Kevin Posted October 4, 2017 Share Posted October 4, 2017 4 hours ago, coneheadjohn said: Strange day today,almost 2 years exactly since we started at Birmingham after Mr Ray sent us we're sat back in his office,anyway I'll try and get to the nitty gritty which is probably as we expected. Joel's health problems at the minute are all down to years of being ill and years of surgery,nothing they can do about that. We've sat and had a good look at his MRI scans and that has helped us get a good understanding of what Joel has had done. The left side of his head is unbelievable when you look at it from the different angles. The conclusion being that Mr Irving has drilled so far in and drilled so much bone out that there is nothing left to take out,you always have to take a bit extra out around the disease to prevent leaving any cells in.This isn't unexpected but having been able to see it makes us realise the situation fully. Scan clear at the minute,if disease returns it will be untreatable. Joel will have a routine scan January then every 6 months if clear.If he becomes unwell and his issues with either ear he will go straight in and be scanned. That's it really,just taking it in. Sounds positive mate ,everyone on here hopes so and rooting for you all .When you are that close to it it's so difficult, easy to say but keep going lads. Link to comment Share on other sites More sharing options...
Coneheadjohn Posted October 4, 2017 Author Share Posted October 4, 2017 39 minutes ago, King Kevin said: Sounds positive mate ,everyone on here hopes so and rooting for you all .When you are that close to it it's so difficult, easy to say but keep going lads. That's appreciated,and it could be worse and at least we have a plan in place now. We would prefer a safety net but it is what is. Link to comment Share on other sites More sharing options...
BarrowRam Posted October 5, 2017 Share Posted October 5, 2017 Joel is a brave young man and has a family who love him so much. I hope the scans keep clear and you all start Having quality time and getting Joel to watch the rams. Link to comment Share on other sites More sharing options...
Coneheadjohn Posted October 13, 2017 Author Share Posted October 13, 2017 On 04/10/2017 at 18:51, Chester40 said: Well you don't have a decision to make..which can sometimes give you some semblance of clarity and peace. The scan was clear. So you can be happy. There is nothing to be done except be glad he's free to enjoy himself. Enjoy today and tomorrow..and the day after.., hoping there's no bad news...a good lesson for all of us there I think! All the bestate. Thanks mate,as always. Sorry,I’m a bit behind,I was going to say backward Link to comment Share on other sites More sharing options...
Coneheadjohn Posted October 31, 2017 Author Share Posted October 31, 2017 I’ll give you a brief update on Joel. Been in and out pretty consistently for routine stuff and I am waiting a call from Professor Ray as his left ear went black over the weekend. I’ve been struggling to get my head round them not treating Joel if the disease returns but we are still hopeful it either won’t or medical science will advance,recent research in California into treating Cholesteatoma with radiotherapy has failed unfortunately. Joel is quite happy that he won’t have to undergo any more surgery,for some reason(I’m assuming it’s his deafness)he thought he was going to have to go to Africa for his next operation . Certainly not up to any football at the minute but hopefully we can build him up a bit and get him to one before Christmas.Obviously none of us are going till he can manage it. Cheers Link to comment Share on other sites More sharing options...
RamNut Posted October 31, 2017 Share Posted October 31, 2017 What is the cause? presumably It is genetic? Link to comment Share on other sites More sharing options...
Angry Ram Posted October 31, 2017 Share Posted October 31, 2017 4 hours ago, coneheadjohn said: I’ll give you a brief update on Joel. Been in and out pretty consistently for routine stuff and I am waiting a call from Professor Ray as his left ear went black over the weekend. I’ve been struggling to get my head round them not treating Joel if the disease returns but we are still hopeful it either won’t or medical science will advance,recent research in California into treating Cholesteatoma with radiotherapy has failed unfortunately. Joel is quite happy that he won’t have to undergo any more surgery,for some reason(I’m assuming it’s his deafness)he thought he was going to have to go to Africa for his next operation . Certainly not up to any football at the minute but hopefully we can build him up a bit and get him to one before Christmas.Obviously none of us are going till he can manage it. Cheers Africa?? I assume South Africa? Link to comment Share on other sites More sharing options...
Coneheadjohn Posted October 31, 2017 Author Share Posted October 31, 2017 39 minutes ago, Angry Ram said: Africa?? I assume South Africa? No mate,Joel just misheard his consultant,went away and googled it and got completely mistaken. 2 + 2= 5. You can have some very entertaining conversations with Joel if he doesn’t quite get what you’re saying or read your lips. Link to comment Share on other sites More sharing options...
Coneheadjohn Posted October 31, 2017 Author Share Posted October 31, 2017 3 hours ago, RamNut said: What is the cause? presumably It is genetic? Possibly or birth defect. Link to comment Share on other sites More sharing options...
Coneheadjohn Posted October 31, 2017 Author Share Posted October 31, 2017 This is our conversation after. Nugent scores on Saturday @Angry Ram. Nugent Just scored Joel. I thought he was injured. What?(shouting)Nugent scored...reyt goal. Joel...I thought Benty was injured. No Nugent. I thought Martin was on the bench. Me(laughing).It’s ok mate,we’re winning. Joel...Nuge scored Dad,Just said on SSN,I thought I was the deaf one. Ok mate? Link to comment Share on other sites More sharing options...
Coneheadjohn Posted November 1, 2017 Author Share Posted November 1, 2017 Me and Joel en route to the hospital. I’ve got a really bad feeling about this. Hopefully I’m wrong,I’ll update this later. Link to comment Share on other sites More sharing options...
Wolfie Posted November 1, 2017 Share Posted November 1, 2017 9 minutes ago, coneheadjohn said: Me and Joel en route to the hospital. I’ve got a really bad feeling about this. Hopefully I’m wrong,I’ll update this later. Everything crossed for you all, mate. Link to comment Share on other sites More sharing options...
Coneheadjohn Posted November 1, 2017 Author Share Posted November 1, 2017 Gone straight in for a minor procedure,not sure what’s going on. Link to comment Share on other sites More sharing options...
Angry Ram Posted November 1, 2017 Share Posted November 1, 2017 17 minutes ago, coneheadjohn said: Gone straight in for a minor procedure,not sure what’s going on. Keep the faith mate. Link to comment Share on other sites More sharing options...
rynny Posted November 1, 2017 Share Posted November 1, 2017 1 hour ago, coneheadjohn said: Gone straight in for a minor procedure,not sure what’s going on. Hope all is ok. Link to comment Share on other sites More sharing options...
Coneheadjohn Posted November 1, 2017 Author Share Posted November 1, 2017 He’s back,not happy,me neither. Prof Ray has seen something in his right ear he wasn’t happy with so he’s had a local and they’ve gone in and cleaned it. The left one is infected but still warm,he’s not happy about it. We need to keep checking it,should it go cold some or all of it will have to come off,how that will affect his last surgery I’m not sure. As expected Joel won’t stay in hospital but couldn’t walk too well so I’ve had to carry him out.at least he understands how important time is now in him going into Hospital. I’ll leave you all in peace..for now,Cheers ? Link to comment Share on other sites More sharing options...
Angry Ram Posted November 1, 2017 Share Posted November 1, 2017 42 minutes ago, coneheadjohn said: He’s back,not happy,me neither. Prof Ray has seen something in his right ear he wasn’t happy with so he’s had a local and they’ve gone in and cleaned it. The left one is infected but still warm,he’s not happy about it. We need to keep checking it,should it go cold some or all of it will have to come off,how that will affect his last surgery I’m not sure. As expected Joel won’t stay in hospital but couldn’t walk too well so I’ve had to carry him out.at least he understands how important time is now in him going into Hospital. I’ll leave you all in peace..for now,Cheers ? Been looking at this post for 30 mins and can't decide how to respond.. A 'like' or a 'clap' just did not seem right. neither did a 'tear'.. Joel and you guys are really going through the mill at the moment, it must be really frustrating and worrying all at the same time. One thing I am sure about is that he has a great family around him and I am sure he pulls great strength from that. I saw the look in his eyes at Sheffield and he clearly loves being with you and doing the whole football dads and lads thing. Focus on the good things mate. Link to comment Share on other sites More sharing options...
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