Urgent Advice Needed

Good afternoon,  In July 2018 my husband was diagnosed with a brain tumor (grade 3 Anaplastic Astrocytoma).  He had most of it removed and we had to wait a week for the bisopsy results.  My mother in law and 13 year old son were there the day we were given the results and the oncology nurse gave them to us at his bedside, there were other patients around and at no point was it suggested that my son should wait in a different room so I felt postive that the news couldn't be that bad.   She told us that his tumor was grade 3 cancer and that he would need radiotherapy and chemotherapy.  she also told us that it would come back and he would need more treatment in the future.  I did ask if the treatment would become less effective and she said no.  It was a shock and deep down I guess I knew treatment woudnt' work forever but decided to stay as strong and postive as possible.  A week later a copy of the letter from the oncology nurse to my husbands GP arrived at our house and I opened it as he was still it hospital.  It mentioned that she was unable to give us a full prognosis becasue of my son being present which made be extremly worried but again I just tried to stay positive.   A few weeks later I went with my husband to see his local oncologist for the first time and we were told that people with this type of tumor normally live for 2-3 years.  We were deverstated but had to pull ourselves together as my husband was still in the Nero Rehab ward in that hospital so we had to go back to the ward and put on a brave face.   We both agreed not to tell our son or immediate family how serious the condition was for now.  The problem is that my mother in law then turned up at the hospital with our son and my husband blurted out 'I have only got two years to live'.  It appears that in his confused state (his memory from the tumor/op etc was awful at tha time) he had forgotten what we had agreed not to tell them.   I saw the look on my son's face and panicked so I so told them not to worry as that was the absolute worse case scenario if the tumor came back as a grade 4 and that all the time it is a grade 3 it is treatable.  Since then everyone thinks he is doing so well and I don't know how long I can keep this secret for.  I am not sure if my husband is in denile or has just forgotten the full prognosis (he gets so forgetful and confused) but he talks about when he is better and how lucky he is for it not to be worse so I genuinally think he has forgotten.   He has had radiotherapy which went well but he was hopsitalised with seizures and then a wound infection so everytime I think about talking to his family about it there is more worry and I can't bring myself to tell them.   I also know that if I tell them or even my husband himself they won't be able to keep it to themselves and I desperatly want to protect my son.   He has OCD and has been worse since my husband has been ill and he saw his grandad die from pancreatic cancer so the older he can get before he has to deal with this the better.   I keep seeing information that says 2-3 years for this type of tumor but can be significantly longer and if that is the case for my husband my son could be more or less an adult before he has to know and would cope with it much better then that he would now so why cause him worry and distress unnescersarily.   Part of me feels like I am playing god but then part of me can see no good coming of telling everyone the truth either so I just dont' know what to do and need some advice.  Thank You.

 

  • Hello rw37 and welcome.  You seem to be in the middle of a messy situation when you must be feeling extremely distressed on your own behalf without having to manage everyone else.  I by no means  have the answer to all your problems but really the only responsibility I think you have is to your husband, your son and yourself.  Not having a child with OCD I don't really know what is best.  One of the first things that occured to me is that in a worst case scenario your husband may not live for as long as you believe (golly, I am so sorry to write so brutally) and you may be blamed for misleading everyone.  But that really puts you in the middle of a no-win situation when you are trying to cope with your own emotions.  I think if it was me I would hedge my bets by just telling people it is difficult to know the prognosis - which doubtless varies from patient to patient - and try to put yourself in a situation where you have a bit of peace of mind for yourself.  Does your son get any help with his OCD?  I just wondered if a bit of professional help would help him in this appallingly difficult situation.    I don't suppose this helps you much at all but you need to get yourself into a more comfortable position for yourself to cope with the situation.  Annie

  • Thank you so much for replying to my post.  my son does take Sertraline for his OCD and he has had CBD therapy in the past which has helped so it is just about managable.   He is also doing so well at school and I worry that if he knew the truth it would be too much for him right now.  My mother and sister in law both take pills for anxiety and depression and my mother in law had a nervous breakdown some years ago so her state of mind is fragile to say the least  (when my husband was first diagnosed she said if the news was bad and he only had months she would have to kill herself first as she couldn't bear for him to go before her).   Even my family don't know the full truth as my dad has been getting over cancer himself and to be honest when I visit my family my son has always been with me so I never see them on their own.  I am thinking about seeing a councellor myself but it is finding the time to do anything for myself at the moment.   I totally see your point about what would happen if the worse happens and he has less time than predicted.   Thank you for help.

  • Hi again.  Don't worry, I am not going to harangue you with more of my thoughts but just wanted to say "Look after yourself".  You are having to hold everyone else together when really - in a normal situation - you would be getting at least equal support from other family members - I exclude your son who is young and in a difficult situation himself.  So go and get counselling as you have suggested - do anything you need to get you through this.   And please know that you are always welcome here to talk things through.  Annie