Coneheadjohn Posted February 22, 2018 Author Share Posted February 22, 2018 Prof Ray’s not in till Tuesday now and he needs to go through the radiologist’s report. Be another week till we know anything. Can’t read anything into that. Cheers Link to comment Share on other sites More sharing options...
Shipley Ram Posted February 22, 2018 Share Posted February 22, 2018 Sorry to hear that, I know how hard waiting is for you all. Hopefully 3 points from Reading will distract you. Link to comment Share on other sites More sharing options...
Coneheadjohn Posted February 22, 2018 Author Share Posted February 22, 2018 15 minutes ago, Shipley Ram said: Sorry to hear that, I know how hard waiting is for you all. Hopefully 3 points from Reading will distract you. It’s ok mate,as long as we know what’s going on...cheers. Link to comment Share on other sites More sharing options...
Sith Happens Posted February 22, 2018 Share Posted February 22, 2018 8 hours ago, coneheadjohn said: Prof Ray’s not in till Tuesday now and he needs to go through the radiologist’s report. Be another week till we know anything. Can’t read anything into that. Cheers Waiting can be awful, I totally sympathise. I know they are busy and for the Doctors patients are one of many but it doesnt stop you thinking about it. When I was originally diagnosed they thought my Liver was messed up too, I had to have a Transjugular Liver Biopsy and wait for the results, I got so worked up, then got a letter through asking me to go in and see them but it was weeks away so I got on the phone and just demanded to speak to the doctor and eventually he did and said 'yeah everything is fine'. Dont think sometimes they realise the amount of stress patients and their families go through, or maybe they just become numb to it. Link to comment Share on other sites More sharing options...
Coneheadjohn Posted February 22, 2018 Author Share Posted February 22, 2018 1 hour ago, Paul71 said: Waiting can be awful, I totally sympathise. I know they are busy and for the Doctors patients are one of many but it doesnt stop you thinking about it. When I was originally diagnosed they thought my Liver was messed up too, I had to have a Transjugular Liver Biopsy and wait for the results, I got so worked up, then got a letter through asking me to go in and see them but it was weeks away so I got on the phone and just demanded to speak to the doctor and eventually he did and said 'yeah everything is fine'. Dont think sometimes they realise the amount of stress patients and their families go through, or maybe they just become numb to it. That doesn’t sound pleasant☹️. When Joel had his first MRI in January we got an appointment for the 21st of March! So I’m on the phone if needed,my main mission is to always just tell Joel what he needs to know and try and take as much of the stress out of it as possible. Sometimes I have to stamp my feet,which entails me ringing up and saying please and thankyou a lot. Are you ok mate? Link to comment Share on other sites More sharing options...
Sith Happens Posted February 22, 2018 Share Posted February 22, 2018 12 minutes ago, coneheadjohn said: That doesn’t sound pleasant☹️. When Joel had his first MRI in January we got an appointment for the 21st of March! So I’m on the phone if needed,my main mission is to always just tell Joel what he needs to know and try and take as much of the stress out of it as possible. Sometimes I have to stamp my feet,which entails me ringing up and saying please and thankyou a lot. Are you ok mate? I think you have to stamp your feet, when I spoke to the Doctor he was almost like I dont know what you are worried about its fine, Im thinking well i didn't know that did I? Considering I had been told they suspected some cirrhosis. Im not bad, lurching from one bug to another and trying to get back to work, last night with dad still hobbling and me feeling rubbish decided to just watch on Sky which I hate to do but just so tired all the time. Hope you find out something soon. Link to comment Share on other sites More sharing options...
Coneheadjohn Posted February 22, 2018 Author Share Posted February 22, 2018 Keep going mate,try and stay positive(easier said than done I know). My favourite expressions are “What does that mean?” or “Can you write it down for me”. 26 minutes ago, Paul71 said: I think you have to stamp your feet, when I spoke to the Doctor he was almost like I dont know what you are worried about its fine, Im thinking well i didn't know that did I? Considering I had been told they suspected some cirrhosis. Im not bad, lurching from one bug to another and trying to get back to work, last night with dad still hobbling and me feeling rubbish decided to just watch on Sky which I hate to do but just so tired all the time. Hope you find out something soon. Link to comment Share on other sites More sharing options...
Shipley Ram Posted February 22, 2018 Share Posted February 22, 2018 3 hours ago, coneheadjohn said: “Can you write it down for me”. Once you have it in writing google is your friend. Link to comment Share on other sites More sharing options...
Sith Happens Posted February 23, 2018 Share Posted February 23, 2018 8 hours ago, Shipley Ram said: Once you have it in writing google is your friend. This is one of those proper 'yes and no' things. I do think understanding stuff online is a skill in itself sometimes. When I was originally diagnosed 5 years ago with my condition of course I googled it, and really got in a panic at first, words like 'poor prognosis' and 'leukemia' jumped out at you, and 'average life span of 3-5 years', not something you want to read. What it did do for me is make me understand more about the symptoms etc I had, to the point that I started to feel I had been slightly mis-diagnosed, I had it all written down but as it happens on the very next consultant visit he told me exactly what I suspect that I had a slight mis-diagnosis. When I say slight 'average life span' changes from 3-5, to 10-15 years, still not something you want to read. But then sometimes you have to piece stuff together, and this is where google is not a friend because some people arent very good at it, and some with an illness focus on the negative points. What I discovered was yes the average life span is 10-15 years but actually the average age of diagnosis is mid 60's, well even your average person in your mid 60's lifespan would only be predicted lat 10-15 years anyway, but google doesnt spell this out in black and white. It is so easy to add 2 and 2 and get 5. I know a lot of people through forums who have the same sort of condition as me and they have just googled and read the headlines and gone into a panic, and thats understandable, so yes you are right, but with a 'health warning' i think. Link to comment Share on other sites More sharing options...
Coneheadjohn Posted February 23, 2018 Author Share Posted February 23, 2018 10 hours ago, Shipley Ram said: Once you have it in writing google is your friend. I’ll go along with Paul on this one. I spend far too long(most days) looking at something to try and get an answer and it has been a massive help in some ways,you just have to take it with a pinch of salt,overall I would rather be able to read all the stuff that’s out there. I think I’ve mentioned before @Mrs Cone will watch videos of the operations,not because she’s a nutter(she is),she just feels she needs to do it so she knows partially what Joel goes through, I’ve got better with it over the years. Joel’s terrible because he is deaf he doesn’t hear what the Doctors say and ends up googling something completely wrong. When am I going to Africa Dad?. You’re not Son,don’t worry. Link to comment Share on other sites More sharing options...
King Kevin Posted February 23, 2018 Share Posted February 23, 2018 Been off line for awhile only just picked this thread up ,all the best guys hope everything works out for you. Link to comment Share on other sites More sharing options...
Shipley Ram Posted February 23, 2018 Share Posted February 23, 2018 Good points John and Paul. Because I got pretty well smashed up but took a knock on the head and can't remember the incident, googling the notes is the only way I could work out what was broken (and how it was fixed) The main question for me is how close I can get to my pre accident state, so I'm not worrying as much about the prognosis and trying to work out what I've missed in the google arcticle. Good luck Paul and Joel, and stay strong John (and Mrs Cone), however painful it's been for me the mere thought of my son having the same accident fills me with absolute horror. Link to comment Share on other sites More sharing options...
Coneheadjohn Posted February 23, 2018 Author Share Posted February 23, 2018 3 hours ago, Shipley Ram said: Good points John and Paul. Because I got pretty well smashed up but took a knock on the head and can't remember the incident, googling the notes is the only way I could work out what was broken (and how it was fixed) The main question for me is how close I can get to my pre accident state, so I'm not worrying as much about the prognosis and trying to work out what I've missed in the google arcticle. Good luck Paul and Joel, and stay strong John (and Mrs Cone), however painful it's been for me the mere thought of my son having the same accident fills me with absolute horror. Hope you get fixed up,feel free to tell us about it on here if you want. Link to comment Share on other sites More sharing options...
Sith Happens Posted March 2, 2018 Share Posted March 2, 2018 Did you get to speak to the Doctor @coneheadjohn ? Link to comment Share on other sites More sharing options...
Coneheadjohn Posted March 2, 2018 Author Share Posted March 2, 2018 1 minute ago, Paul71 said: Did you get to speak to the Doctor @coneheadjohn ? We’ve heard nothing mate. I could come up with a multitude of conspiracy theories but I am hoping that they have looked at the scan and have written to us to tell us it’s ok. If I haven’t heard anything by Tuesday I will ring them,it’s impossible to call this one. Joel’s oblivious to everything I’m doing at the minute which is the main thing. As soon as we know I’ll let you know mate,good or bad. Cheers Link to comment Share on other sites More sharing options...
Sith Happens Posted March 2, 2018 Share Posted March 2, 2018 1 minute ago, coneheadjohn said: We’ve heard nothing mate. I could come up with a multitude of conspiracy theories but I am hoping that they have looked at the scan and have written to us to tell us it’s ok. If I haven’t heard anything by Tuesday I will ring them,it’s impossible to call this one. Joel’s oblivious to everything I’m doing at the minute which is the main thing. As soon as we know I’ll let you know mate,good or bad. Cheers Cheers. Yes hopefully no news is good news. I know its very different for you but I have started to work out if something seriously urgent then they are on the phone to you straight away. Doesn't stop the worry until you have been told though. Link to comment Share on other sites More sharing options...
Coneheadjohn Posted March 2, 2018 Author Share Posted March 2, 2018 2 minutes ago, Paul71 said: Cheers. Yes hopefully no news is good news. I know its very different for you but I have started to work out if something seriously urgent then they are on the phone to you straight away. Doesn't stop the worry until you have been told though. I’m feeling positive because I’ve got to,I’m sort of expecting something unexpected,which I know makes no sense whatsoever. Link to comment Share on other sites More sharing options...
Sith Happens Posted March 2, 2018 Share Posted March 2, 2018 25 minutes ago, coneheadjohn said: I’m feeling positive because I’ve got to,I’m sort of expecting something unexpected,which I know makes no sense whatsoever. Yeah it does. Link to comment Share on other sites More sharing options...
Shipley Ram Posted March 2, 2018 Share Posted March 2, 2018 12 hours ago, coneheadjohn said: It could have all been over quite easily mate. Funny you should say thay, I had a sobering conversation(one of a number with differant people) with the trafic cop a few weeks after, I asked if he still had some of my things including my helmet, he said "yes, I always keep the helmet in case the coroner asks for it" gulp. Sorry you haven't had the news as expected, but I'm happy you're so relaxed about it. Link to comment Share on other sites More sharing options...
Coneheadjohn Posted March 3, 2018 Author Share Posted March 3, 2018 8 hours ago, Shipley Ram said: Funny you should say thay, I had a sobering conversation(one of a number with differant people) with the trafic cop a few weeks after, I asked if he still had some of my things including my helmet, he said "yes, I always keep the helmet in case the coroner asks for it" gulp. Sorry you haven't had the news as expected, but I'm happy you're so relaxed about it. Are you going to carry on biking? Link to comment Share on other sites More sharing options...
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