6 May 2017 at 1:11 am #54461
I was on the old forum under my old name.. I’m Matt and I’m currently 19, a NET in my appendix caused appendicitis when I was 16 just before my final GCSE exam (ffs cells get a grip). It was removed along with my appendix, all follow-up tests including CgA and 24h 5-HIAA were totally fine, and I had a couple of CgA tests over the following year-and-a-half which were all fine. I probably should have had it checked since but eh well haha
I live for ice hockey. Currently I’m on a gap-period due to transitioning (female-to-male) and chronic illness which I’m especially struggling with right now. This time last year I started getting cluster headaches and along with a few infections, a life-threatening asthma attack, hospital for that, the clusters, and an operation which resulted in a catheter which had to be removed in A&E and.. it was basically hell and I’ve come so far since then.
I’m really just here for the information, and any input on things.
I’m open to questions if anyone has any 🙂
— Matt6 May 2017 at 10:08 am #54462
My name is Andy and it appears at your tender age and ambition you are having a very difficult time. It is great you are occupied with you Ice Hickey that is great. By what I have read you are doing a cracking job with your life despite your immense difficulties. The tests are alien to me because it seems I have a different NET that is not uncommon. The main advice is you must try and be open and talk to the right people openly and honestly if you don’t already do that way. Over my past eleven years nobody is there to hurt you but they tend to bend over backwards to help you.
Firstly, you might have a nice Doctor who is very helpful. However, if they have not got a knowledge or experience of NETS then with no disrespect your starting at a low place because of the cruel and complicated nature of NETS and the varying nature of the problem. It needs people who know the routine.
I have always been told by my Specialist and in some cases there are sad cases but this is chronic in that you deal with issues every so often but not always at short periods it is probably were you have to slow down life and deal properly. For example ease of on the hockey for a while to give your body a chance. However, don’t rule out exercise as I believe this compliments the whole job.
If you have not got one try and get a NET Specialist who can advise you and treat you with experience that is the key. I don’t know where you live but if you can get access to centre of Expertise on NETS. It makes a great difference as they know the situation and can treat. Without digressing you MUST go for that check and keep a head of the game. it is important part of the routine.
I know its not easy Matt because I had the thought years that I may not have long well keep that right out of your head. We have done even years it is not easy as you can see from my story it has not been easy and if you can see me know you would not believe my fitness and abilities recently rowing eight miles for CRUK challenge. I can do a lot more physically due to my treatment.
Just NEVER GIVE UP! because a lot of work is going into treatments for survival.
I can go on and on but due to a illness during my time I get a little tired after concentrating but don’t let this stop you contacting me with questions as I know more as I have had it for so long. I could have died three times during my time and they considered me for palliative care two years a go because all options were ending. Then my Specialist had a good knowledge and assisted me greatly.
I don’t want to bore you but I know more and will pass on what ever to you.
On Monday morning you must contact Catherine Bouvier or her great staff at the NET Patient foundation and they will help you. They have been going ten years and now are a centre of excellence. What they don’t know about NETS is not worth knowing. They know many contacts so then can direct you to the right people. They are spot on and mention my name that I put them onto the foundation. They have helped me for ten years.
If you are not happy the ask your Doctor if you can be referred to a NET Specialist. The NETS need Add to special attention by people in the know!
I am not saying it is not hard MATT at times because it is to me and my great family. That is another thing you need to help you along I have lived 11 years and I know from this site there are a lot of poorly people who have my care and best withes due to the nasty and horrible nature of NETS.
I could go on for ages as a lot has happened to me over the tears but will gladly share it with you. I may have forgotten bits but I know you have the right bits.
Another unsuspecting place to go is YOU TUBE. I don’t know if will have yours but they bundles of information on mine including. on screen leaflets and lectures on the was forward or understanding more about your NET.
You know where I am MATT.
Its not easy to deal with but if you can get your cancer stable that may be possible the you can live. I did for seven years as a Detective Sergeant dealing with serious jobs on a daily basis just me and my cancer living together.
Don’t forget your friends.
NEVER GIVE UP YOU ARE A FIT PASSIONATE HOCKEY PLAYER 🙂6 May 2017 at 1:21 pm #54463
Sorry, I should have mentioned DOH!
I am no expert but it sounds like one or more of your tumours has become lively instead of staying quiet ands giving you a quality of life.
One of my tumours kicked off two years ago and that is when I nearly died as they could not control it and that is when I got great help from some one in the knowledge that was very important.
What we believe I was of my tumours suddenly requested extra calcium in my blood. It started to rocket and began to cause me grief.
I am not saying it is definite but that is what could be happening to you causing the issues and unpleasant life at this time. I did not know if you had a NET Specialist but I would say that you need one now to calm the situation. This could be one of the hiccups that some NET sufferers like Myself have had to do in the past is get then dealt with if possible and ideally return to a better standard of life.
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