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Need to off load...
Sorry to offload on you ladie but i have to get this out of my system again befor i go completely mad. My husband was diagnosed with a benign brain tumour in October, we were sent away from the hospital after diagnosis with all the platitudes of "we will keep and eye on it but its very unlikely to ever do anything, and its probably been there for many years, maybe even sisnce birth" we had to go back in January for a review scan which we fully expected to be fine and to be sent away for 12 months, however the tumour on the right side (he has 2 one on the left and one on the right) was showing signs of progression and due to its size and position it is not operable, anyway he had to go for another biopsy but we were basically told to prepare for the worst.
Anyway after 2 weeks of sheer hell we got the result that the tumour on the right is completely benign the sams as the one on the left and the consultant now thinks that there may have been an error with the first scan when they injected the enhancing dye that made it look as though it had progressed by the second scan when infact it may not have done. He was very positive about the future and said he doubted that aside from the risk of siezures there would be any complications. Hubby has to go back in June for another scan to review and keep an eye on it but assuming thats ok then we will be sent away for a year and if no changes show in 5 years then he will be discharged.
The trouble is I dont feel like i can get on with my life at the moment. Isaac will be 1 in 3 weeks and i feel like i have completely missed out on his first year, and all the things i have taken for granted in the past such as leaving the children with phil and him going swimming or to the parke with them I dont fel i can do any more just in case he has a fit or faints. My 3 year old has a playgroup outing on 13 june and parents are asked to go too to make it a family day, when i asked phil to book a day off to come he just said he didnt want to incase the outcome of his scan on 2 june isnt good::\?
Is this what its going to be like for the rest of our lives??? What if the hospital got it wrong again and the tumour has progressed. Most days I try to be positive and take on what the consultant has said and be positive but then it just hits me that he does have a brain tumour and it isnt operable so what do we do if it does change.
Sorry to sound so depressing i just really need a shoulder to cry on and there is nobody i can off load to, my parents just get impatient with me and tell me i have to get on with my life but i wish they would realise it isnt that simple, i cant off load to his parents because its their son and they must be finding it hard themselves. I really need some support and help
Anyway after 2 weeks of sheer hell we got the result that the tumour on the right is completely benign the sams as the one on the left and the consultant now thinks that there may have been an error with the first scan when they injected the enhancing dye that made it look as though it had progressed by the second scan when infact it may not have done. He was very positive about the future and said he doubted that aside from the risk of siezures there would be any complications. Hubby has to go back in June for another scan to review and keep an eye on it but assuming thats ok then we will be sent away for a year and if no changes show in 5 years then he will be discharged.
The trouble is I dont feel like i can get on with my life at the moment. Isaac will be 1 in 3 weeks and i feel like i have completely missed out on his first year, and all the things i have taken for granted in the past such as leaving the children with phil and him going swimming or to the parke with them I dont fel i can do any more just in case he has a fit or faints. My 3 year old has a playgroup outing on 13 june and parents are asked to go too to make it a family day, when i asked phil to book a day off to come he just said he didnt want to incase the outcome of his scan on 2 june isnt good::\?
Is this what its going to be like for the rest of our lives??? What if the hospital got it wrong again and the tumour has progressed. Most days I try to be positive and take on what the consultant has said and be positive but then it just hits me that he does have a brain tumour and it isnt operable so what do we do if it does change.
Sorry to sound so depressing i just really need a shoulder to cry on and there is nobody i can off load to, my parents just get impatient with me and tell me i have to get on with my life but i wish they would realise it isnt that simple, i cant off load to his parents because its their son and they must be finding it hard themselves. I really need some support and help
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Replies
I would like to think that I would try anf forget about it until i knew what the outcome was for certain because otherwise it would firstly drive me crazy but also put a cloud on all the things you should be enjoying now, being a family.
one thing i am fairly sure about is that you need to talk about how you feel cos you cant keep something like this bottled up, your parents may be a good step as they are probably saying that you need to get on with your life because it hurts them to see you in this situation without being able to help, and talking is getting on with your life because its possible that it will seem easier just by offloading every once in a while.
Im sorry i cant be of much help but wish you all the best with the results and your family
Is it possible to discuss it with your oh? I know he is going through hell but he understands the nightmare of the wait better than anyone, perhaps you can help each other by talking.
If this is not a good idea is there any sort of support group or counceller through your GP?
If not I would say get on here and rant and scream and offload as much as you need to because there is always someone on here to chat back even if they cannot offer advise they can always give support.
XXX
Try not to focus on the negative although I realise that is easier said than done.
I agree with sillymoo that is there any sort of support group that you could join maybe?
If not you know there is always here to offload as we will always be happy to listen and offer support where we can.
Big big hugs to you and your family and I'll keep my fingers crossed for you all xx
Silly moo i cant really talk to oh because if i try he just replies with "oh you think im going to die dont you", its not that i do its just that i need to talk to get things out of my system and help me feel better. I would like to see another consultant at a different hospital because we have been given so many conflicting opinions by this one and mistakes have been made that i really dont trust them, also we still dont really have a straight answer, but when i try to say this to oh he gets really down and just thinks the consultant is hiding how bad it is.
I defo feel like im going mad and in a way i would like to fast forward to june to get the scan out of the way then hopefully we will be told that there has been no change and we can go away and relax a bit, but the trouble is there is this nagging doubt in the back of my mind.
Perhaps see your gp and discuss it with them as they may be able to offer some advise or support.
Not really sure what else i can say to whats already been said but i couldnt just not say anything after reading that.
It must be so difficult for you and your oh to deal with this plus a little baby to add to the equation. I think you are thinking too much about everyone else so much so that you are forgetting that you have emotions and feelings that also need to be seen. You cannot be the only strong one in your family. I understand you cant talk to your parents but may you could try and sit down with your oh (preferably evening when lo is asleep) and just talk to him, be open and let him know how you are feeling, you cant go on like this and if you cant talk to him then it will always continue to rule your lives and will push you further apart because your feeling will eventually turn to resentment. Go on the 13th June plan things, and looks towards the future. It sounds as though you oh doesnt know how to move forward cause he is living in constant fear that the worst is going to happen, you both need to think more positive even though i know its hard but drive your strength, energy and postiveness through your lo. Move forward and look towards the future for them, both of you can do this and can get through.
In the meantime i am sending you lots of hugs and for somone that didnt know what to write i seem to of written a essay!!!!!! sorry!!!!
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