CON207 From United Kingdom, joined Dec 2003, 292 posts, RR: 12 Posted (5 years 9 months 5 days 3 hours ago) and read 2778 times:
After almost 22 years together, I have just had my world turned upside down. My husband John, has just been diagnosed with a brain tumour. It started this Sunday 16th September after he suffered a seizure whilst over at my uncle's place. He was taken to hospital and it was decided to keep him in overnight. Its as well they did!
The following day, he had appeared to be ok and after I had spoken to the doctor dealing with his case via phone, John unfortunately suffered two more very bad seizure's. I was asked to attend straight away. After a CT scan had been performed, it was then it discovered WHY these seizures had occured. A tumour has been growing for at least 6 months ,maybe longer,to the front right side of his brain. I then realised that this had been the cause of his headaches, but apart from that, there had been little warning.
I am waiting for the results of an MRI scan, which will reveal the extent of this tumour, and what the outlook will be for the future and if the Neuro-surgeon can operate. I'm devastated, as are family and friends, but I have to remain strong, which is going to be an uphill struggle. If its too dangerous to operate then we have to take it from there and see what options are available to him.
It dosen't pay to take life for granted, but you can't help thinking "Why us?". 2007 hasn't been a great year for us and now this.I feel emotionally drained already . I just wanted to share my thoughts with someone. Thanks !
Cabso1 From Canada, joined May 2005, 502 posts, RR: 0 Reply 1, posted (5 years 9 months 5 days 3 hours ago) and read 2765 times:
That's terrible news. Your husband has my prayers. It can be traumatizing moment, going through all this. But the important thing is to hold tight and just hope for the best. Hopefully the MRI will reveal that it'll be treatable. I've not been through this (touch wood) however, I do understand how a bad moment it can be.
Pope From , joined Dec 1969, posts, RR: Reply 2, posted (5 years 9 months 5 days 2 hours ago) and read 2743 times:
Quoting CON207 (Thread starter): It dosen't pay to take life for granted, but you can't help thinking "Why us?". 2007 hasn't been a great year for us and now this.I feel emotionally drained already . I just wanted to share my thoughts with someone. Thanks !
God Bless. My family and I will keep you in our prayers.
808TWA From Canada, joined Jan 2006, 701 posts, RR: 22 Reply 3, posted (5 years 9 months 5 days 2 hours ago) and read 2737 times:
May your strength grow from those around you to help deal with this awful event. My prayers are with you and your husband, and hope that the wonderful health specialists can help John make a full recovery from this awful condition.
Keesje From , joined Dec 1969, posts, RR: Reply 4, posted (5 years 9 months 5 days 1 hour ago) and read 2693 times:
CON207 sad to hear. I feel for you.
About the next phase: the process will progress regardless if you like it or not. As you say making the best of it / supporting your loved ones is the best thing you can do.
For people in the situation of your husband outside attention / support is very important, you can play a role in "mobilizing' his social environment by communicating (e.g. mailing) about how he is doing / feeling so others can take action if they feel so..
To all : don't neglect / ignore (limited) pains that occur & keep coming back, don't be tough, visit a doctor. I've seen this before, it can happen to all.
UAL777 From United States of America, joined Aug 2003, 1492 posts, RR: 5 Reply 5, posted (5 years 9 months 4 days 23 hours ago) and read 2658 times:
Quoting CON207 (Thread starter): My husband John, has just been diagnosed with a brain tumor. It started this Sunday 16th September after he suffered a seizure whilst over at my uncle's place. He was taken to hospital and it was decided to keep him in overnight. Its as well they did!
Have faith. My sister (31 yrs old) was diagnosed with a brain tumor in June 2006. She had surgery to have it removed and it has not been back since.
The usual treatment is surgical removal which has some side-effects depending in which part of the brain the tumor is located. When my sister had her surgery, the tumor was located on top of her speech/movement part of the brain. When the tumor was removed, she could not talk due to swelling of the brain. She could totally understand and comprehend what we were saying to her, she just could not form the verbal response.
There are many types of brain tumors and many are treatable.
Have hope and remain positive, because the biggest problem will be how your husband copes with the reality of having the tumor.
Find a top-notch place to perform the surgery if it is operable. If treatment in the US is an option, I would recommend MD Anderson in Houston, Texas.
Frequentflyer From United States of America, joined Jul 2005, 736 posts, RR: 3 Reply 7, posted (5 years 9 months 4 days 22 hours ago) and read 2629 times:
Hey Sue:
I so feel Sorry for this bad News.
Keep the hope alive, and be its best Ambassador to John.
EA CO AS From United States of America, joined Nov 2001, 12595 posts, RR: 64 Reply 8, posted (5 years 9 months 4 days 22 hours ago) and read 2608 times:
You and your family are in my thoughts and prayers.
Quoting UAL777 (Reply 5):
There are many types of brain tumors and many are treatable.
And I'm praying this is one of the treatable variety. Best of luck to you both.
"In this present crisis, government is not the solution to our problem - government IS the problem." - Ronald Reagan
Arsenal@LHR From United Kingdom, joined Mar 2001, 7791 posts, RR: 22 Reply 9, posted (5 years 9 months 4 days 21 hours ago) and read 2586 times:
I can feel your pain and anguish, i was in the same situation in December 2005. My younger brother was diagnosed with a brain tumour too, the wait for biopsy results was the worst time of my life, no one will understand it unless they go through it themselves. But thanks to God the tumour was benign and low grade, your husbands prognosis depends entirely on the tumour's grading. My brother had surgery, had a shunt inserted and radiotherapy, he is now well on his way to recovery and the prognosis is very good. I wish you and your husband all the best.
CON207 From United Kingdom, joined Dec 2003, 292 posts, RR: 12 Reply 11, posted (5 years 9 months 4 days 19 hours ago) and read 2518 times:
Firstly, A big heartfelt thankyou to ALL of you for your words of encouragement and to know that some of you have personally endured this yourselves.
I haven't long returned from the hospital . Family members have been visiting John to support and try to lift his spirit up.
He was in a much better frame of mind and now he is determined to fight this and which is what we all wanted to hear.
I will be passing on your words of hope, encouragement and prayers. I have to admit, I burst into tears when I read the replies.
Bev. I will be in contact and thanks for this. You know my number, as I do yours.
I will keep you informed on Johns progress.
God bless you all and Peace!
UAL777 From United States of America, joined Aug 2003, 1492 posts, RR: 5 Reply 13, posted (5 years 9 months 4 days 17 hours ago) and read 2469 times:
Quoting UAL777 (Reply 5): When the tumor was removed, she could not talk due to swelling of the brain. She could totally understand and comprehend what we were saying to her, she just could not form the verbal response.
To clarify, she regained her speech in about a week after the swelling subsided.
RedArrows From Ireland, joined May 2007, 68 posts, RR: 0 Reply 14, posted (5 years 9 months 4 days 16 hours ago) and read 2455 times:
Hey Con207,was really sad to hear about your husband.My family's been hit with something like this too.My cousin(25) recently married and father of a new born child discovered a lump and doctors now believe he has testicular cancer and he's having a scan next week so I'll be praying for both him and your husband tonight
DavestanKSAN From United States of America, joined Sep 2005, 1678 posts, RR: 15 Reply 16, posted (5 years 9 months 4 days 16 hours ago) and read 2446 times:
Good God. I'm terribly sorry to hear that news. News like that makes every other problem seem so petty. I'm grasping for words here, so I can only say how much I'm hoping that your husband will make a full recovery. I'm praying for him, you, and your family. Please know that we are all here for you, so if you're ever feeling down, we will be your support.
I hope that you and your husband will get through this, and even though we've never talked, I'm sure that you will be his rock through all of this, and guide him through it. May God watch over you and your family and help John get well soon!!!!
All the best, and God bless you,
Dave
Yesterday we've sinned, today we move towards God. Touch the sky....love and respect...Safe Star!
Vaporlock From Canada, joined May 2001, 3645 posts, RR: 58 Reply 17, posted (5 years 9 months 4 days 14 hours ago) and read 2411 times:
Sue, I am so sorry to hear about your hubby. I couldn't even begin to imagine the stress you must be feeling.
Your right about not taking life for granted....it is a very precious thing. All you can do right now is take one-day at a time and know that we are all praying for your hubby, yourself and family. It is amazing sometimes where we find the strength to cope with things that come along like this but somewhere inside we just keep going.
Please know that my prayers and thoughts are with you.
Stay Strong.....
Phyllis
Life is a bitch sometimes....Smile, laugh, play~~enjoy every moment~~life is too short!!
CON207 From United Kingdom, joined Dec 2003, 292 posts, RR: 12 Reply 20, posted (5 years 8 months 4 weeks 20 hours ago) and read 2246 times:
Thanks to all who have posted their thoughts and messages of encouragement.
Well.. the fight goes on. John is on various medication at the moment. One lot of tablets to prevent any further seizures, taken at one tablet 3 times a day(Epilim. Dexamethasone to attack the swelling and inflammation from the tumor, two of these 4 times a day. Phenytoin (not to sure what these are for), 3 taken before bedtime. In total 15 tablets a day, but there are some side effects. The muscles in his right leg have become very painful and cramp like spasms, so now Tramadon has been issued to help him get pain relief. A further 1-2 tablets 4 times aday making the total now between 19 and 23.
But Im so angry with the hospital. We had been given very little information as to the results of the MRI scan apart from that it could be seen but wasn't totally conclusive so now a second scan has been lined up. And to make matters worse, he was released from hospital unexpectedly for the time being on Friday 21st September and several letters were to be taken to his GP so that she was aware of the situation. We thought this a bit odd.
This morning , a phone call was recieved from a hospital doctor stating that they wanted him back in and that they were going to perform a biopsy on the tumor and have it analised. It has emerged that John should have never been allowed home at all as he should have been transfered Friday to Neurology and that the Neurosurgeon handling the case had assumed that he was on the ward ready for this procedure to be carried out. The bed allocated for him has been let so now John is waiting to get back in which will be any day. The Neurosurgeon wasn't pleased at all. Someone has messed this up totally here and I want answers. The doctor on the phone apolgised for the lack of information and we should have been kept totally informed at all times. No wonder John is on so many tablets as he is ( thanks to our own doctor getting on to the hospital and sorting this mess out) . Im going to lodge a complaint. Its upsetting and stressful enough as it is , but to find this out is beyond belief.
You put your trust in what you believe to experts at what they are doing and they screw up.
MBMBOS From United States of America, joined May 2000, 2562 posts, RR: 1 Reply 22, posted (5 years 8 months 4 weeks 19 hours ago) and read 2194 times:
Sue,
I don't know if there is an equivalent in UK hospitals but in the States, most hospitals and medical centers have an ombudsman, who's role it is to act as an intermediary when a family does not think they are getting adequate attention and/or information from doctors or hospital staff. In many hospitals, the ombudsman is taken very seriously and they can be quite successful in ironing out these kind of issues.
You might want to see if your hospital has an ombudsman or an equivalent position.
Rineanna From Ireland, joined Jan 2007, 879 posts, RR: 13 Reply 23, posted (5 years 8 months 4 weeks 18 hours ago) and read 2187 times:
CON207,
I really hope everything works out fine for you and your husband. I'll include both of you in my prayers tonight and every night.
Take care of yourself too. It mightn't be the same as having someone face-to-face to talk to, but there'll always be someone on here 24/7 that would be more than willing to chat with you about whatever through PMs or on this very thread if it helps.
ScarletHarlot From Canada, joined Jul 2003, 4673 posts, RR: 59 Reply 24, posted (5 years 8 months 4 weeks 17 hours ago) and read 2164 times:
Sue, I am so sorry to hear this news but it sounds like you and John are fighting this hard and I hope you will be successful. Be strong for him - we are here to listen when it gets too hard. Both of you hang in there!
Hugs,
April
But that was when I ruled the world
25 MCOflyer: Sue, Do everything in your power and let god do the rest. Also, if you write a complaint, have someone proof read it for errors. Your family is in my
26 TuRbUleNc3: I wish you and your family all the very best. I cannot begin to imagine how it feels to be in this situation. You are all kept in my prayers, may the
27 CON207: Well John has gone back into hospital today. I've not long come back home. He is now on the Neurology ward in preparation for a second MRI scan. This
28 PlymSpotter: Sue, This is really awful news to hear, I had the pleasure of meeting John when you came to the MAN meet a few years back, all I can say is that it sh
30 Diamond: Phenytoin is a generic drug used in place of Dilantin. " ... Dilantin is indicated for the control of generalized tonic-clonic (grand mal) and comple
31 WestJetYQQ: Terrible News. I had a friend with a brain tumor in the second grade. I missed a few months of school, but It was removed successfully, and he made a
32 Boeing744: Sue, I'm very sorry to hear about this news. I am not religious, but my thoughts are with you, your husband and your family in this difficult time. It
34 GOCAPS16: Hi Sue, I'm sorry to hear about your husband. I hope everything will be alright. My father was diagnosed with brain cancer in 2003 and doctors found a
35 Boeing4ever: All the best to your husband. He is in my prayers. Hopefully the tumor will be benign and operable. Thus it can be removed and it'll be a simple matte
36 Saxdiva: Sue, I can't offer anything besides best wishes, but you and your husband have those in spades. Be strong. -Leanne
37 CON207: Hello Everyone. First. I apologise for being absent . Its been another week of mayhem , and to top it all . I caught a very heavy cold making me feel
38 Femme: Sending you thoughts and wishes for then............ Claire x
39 Klaus: Don't apologize for anything. Getting well yourself is much more important. All the best to you two! Good luck with the biopsy results!
40 CON207: Femme and Klaus... Thanks for your encouraging words and to EVERYONE else. Just alittle further info as well. John has had constant,cramp-like pain in
41 DavestanKSAN: All the best with the biopsy results. I'm praying the tumor is benign . All the best to you both, and kudos to you for staying so strong. Thanks for t
42 Klaus: Ouch... cramps are nasty; If that's what it's like, targeted pain therapy really sounds like a plan to at least make it easier to live with.
43 Jpax: Sue, Brain tumors suck. I lost my ten year old brother to one after a sixteen month battle to one on April 11, 2006. It's going to be a long ride with
44 DL021: My prayers and best wishes to you, your husband and entire family. I pray that it's treatable and recovery is the future. Stay positive and strong dur
45 Jamie757: Sue and John, Best wishes to both of you, I hope all works out for the best, I have no doubt that it will! I'd love to be able to add more to my reply
46 CON207: Well, we have recieved the news we had been waiting for and I'm afraid its not good at all.To be honest, I had feared this would be the outcome. I had
47 Klaus: Indeed it is. That is a punch to the gut nobody deserves. I am very sorry. One thing to remember is that medical science is still imprecise in many w
48 CON207: Thanks Klaus. I know there are going to be times when I feel like doing this and running away, but that won't solve anything will it? Got to wait for
49 ScarletHarlot: Sue, I am so sorry to hear this bad news. It's awful to have your fears confirmed, but don't lose hope - where there's life there's hope. Stay strong
50 Nudelhirsch: Sorry to hear that! This is really terrible news. But even after that biopsy it's not time to give up yet! A friend of mine had a brain tumor removed
51 9V-SPJ: So sorry to hear about this bad news. Regarding other clinics, have you looked at options in the US or maybe even Singapore? I know that flying will b
52 Boeing4ever: Stay strong. You're husband is in my prayers. But also remember, that there is hope! Look at Nudelhirsch's story. Definately seek out a specialist. Be
53 ModernArt: If you could go anywhere in the world to get another opinion, I would suggest the Texas Medical Center/MD Andersen Cancer Center in Houston. However,
54 GSM763: First of all my deepest sympathies to you and John. Having recently had my mother go through surgery to remove a tumor in her head (thankfully it had
55 Infodesk: Reading this thread has deeply saddened me. Life is so precious and I think many of us are all guilty of forgetting that. We complain about unimportan
56 CON207: I've been reading Nudelhursch's reply with great interest and thanks so much. Well .. alittle development to update you all. Its been a couple of days
57 Klaus: And unexcusable as well. It is good to hear that he's really on your case now; All the best!
58 Mirrodie: CON207, You and your family are in our thoughts and prayers. We really wish you all the best as you go through all this and we're here to listen. mirr
59 CON207: Hello everyone Sorry its been a week since I last posted on here, but there has been nothing much to say until today. We've been to see the specalist
60 Klaus: I think your priorities are pretty much in order if this is near the bottom of things to worry about. It's good to hear that the specialists see radi
61 Dougloid: Such things are by no means the death sentence that they used to be. I've met two people who have danced with that particular Devil and walked away in
62 CON207: Hello there everyone. An interesting day. With radiotherapy looming soon, we have today been to the City hospital so that John could have a mask made
63 DavestanKSAN: Hi Sue. Thanks for the update. The mask story made me smile, I could just picture John getting the mask. I am praying this treatment will work for him
64 ScarletHarlot: Sue, thanks for the update - I am glad to hear that you are feeling more upbeat. That is really interesting about the mask! Amazing the things you nev
65 Ctbarnes: Sue, Thank you for keeping us updated as to John's condition. I read your reports for the first time and your story is truly heartbreaking. I can't im
66 Vaporlock: Sue, my prayers and thoughts are with John, Simon and yourself. As you said previously "I can only live in hope at this time and gather my strength to
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Good God. I'm terribly sorry to hear that news. News like that makes every other problem seem so petty. I'm grasping for words here, so I can only say how much I'm hoping that your husband will make a full recovery. I'm praying for him, you, and your family. Please know that we are all here for you, so if you're ever feeling down, we will be your support. 
From Germany, joined Jul 2001, 20901 posts, 
Its upsetting and stressful enough as it is , but to find this out is beyond belief. 
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