feeling low

hayley_l · Dec 28, 2007 7:37PM

I'm feeling really low and need to get it off my chest. My hubby had a fit nearly 4 months ago and since then we have been on a rollercoaster of emotional ups and downs he had a ct scan and we were told he had a 5 cm tumour and a smaller tumour, then when he saw a nuerologist he was told that the 5cm area was a cyst and had most likely been there since he was born and they were unsure what the smaller area was so after many consultations they decided to do a biopsy and it was confirmed that he has a grde 1 primary brain tumour called a gangliocytoma, it is completely benign and has a 95%chance of staying as it is now and not doing anything so only a tiny chance that it will grow or turn malignant. He has to go back for another scan in January and if nothing has changed as they expect it wont then they will leave it 9 months and then he will go onto yearly scans, they also think that this tumour has been there for several years (at least 23 and possibly longer). So the outlook is as good as it can be.

Why then do i feel so low and keep bursting into tears and feeling like we have no future. I am really struggling to cope and feel like nobody understands how i feel, i have tried to talk to my parents but my dad just basically tells me to pull myself together and learn to live with it. how do i do that. I have nightmares about losing him and being left on my own with the children which sounds really selfish as its him whos living with it but i am so scared that hes never going to see the children grow up or hes going to get really ill and i will have to watch him die. I know that its unlikely to happen but the trouble is that there is not much info available on the type of tumour he has and most of what is available says they can be completely removed with surgery, trouble with phils tumour is that it is too deep in the brain and they would risk serious damage if they removed it.

Sorry to be so down I just feel like ive got no-one to talk too at the moment

KThom122 · Dec 11, 2007 6:09PM

I can't say I know how you feel coz unless you have been through something similar you have no idea how you would react. I do tho think your feelings are normal.

I think you should talk to your GP- perhaps there is some sort of support group that could help, even just to talk to someone who is trained or has been in a similar situation may help.

Try to stay posative coz 95% chance of being ok is good.

I don't really know what else to say tbh I hope I have been of some help to you tho

Take care
Kirsty

sillymoo · Dec 11, 2007 6:19PM

I think your feelings and worries are completely understandable.
The diagnosis sounds good so try to stay positive and live for the moment, not easy to do with this all on your mind, i agree about talking to your GP to see if there is any help/support groups or just someone who has gone through the same thing.
Stay strong and feel free to offload, rant or use as a shoulder to cry on.

Bex · Dec 12, 2007 7:07AM

Hi Haley. I used to council for S.A.N.D.S and what your feeling it abs normal. You are in shock and very understandably may i add. You got the fright of your life and nobody can understand how that feels until they experience it themselves. Our family is our support machine and its not until its threatened in any way that we totally realise how much we depend on it. To discover something so scary can leave one traumatised for along time and I agree with one of the other ladies that you should seek counselling. Sometimes its not the person going through it that it affects most even tho that may sound funny. We usually worry about others more than ourselves and your reaction to this news is very normal. When people tell you to deal with it they just don't really understand and feel they are helping by saying something rather than nothing. Try not to pay any attention to negative comments tho that's easier said than done I know. Even if the diagnosis is 99% its only natural that your still scarred. Just that 1% plays on your mind. I seriously recommend that you and hubby go get some counselling. Its not a sign of weakness or being silly,it just shows you want to help and understand all roads. I wish you all the luck and don't be scarred to cry and let it out.

hayley_l · Dec 13, 2007 10:21AM

thanks for your support ladies, i have spoken to my hv who is going to try and get some counselling, trouble is phils tumour is really rare and only accounts for 0.7%of braintumours so it may be hard to come by someone who is going through the same. Also went to the gp who said she thinks i am depressed (no really!!) she has given me anti-depressants but after reading all teh side effects and im still breastfeeding so dont really like the idea of taking this sort of medication unless it is absolutely necessary, so i think i may delay taking them for a while and see how the conselling goes. Thanks again for the support.

Hayley xx

Bex · Dec 13, 2007 10:37AM

Depressed because of d sit with huby or pnd???? I was diag with a slight pnd and i managed to pull through without ant ds.....tho like i said i had it mild.I still get a little down,but i found getting out of the house helped alot. Im also still breastfeeding. Like u said see how d counselling goes first. Even if you dont find a counsellor for the exact type of tumor I thinck people who have been diagnosed with something similar will at least have some insight as to what your going through etc so im sure it will help. Good Luck.

hayley_l · Dec 14, 2007 5:30AM

hi bex. dr didnt really say whether it was pnd but tbh i dont think it is. I really think its just that i need some one to offload to whos not going to tell me i am being silly or need to pull myself together. doesnt help that his mother is a complete bitch and spent the whole of isaacs naming day slagging me off to my friends telling them how she has never done anything to offend me but i just dont seem to want to get on with her. Dont even get me started on what she has done coz i would never stop. Any way I took the decision to tell her that from now on i want nothing to do with her at all, she can still see the children but it will have to be when phil takes them to her and if she says anything bad about me when they are there like she has in the past then that will be it. Strangely enough i stayed really calm when i was telling her even tho she was telling me how evil and course and common i was and i felt sooooo much better, like a huge weight has been lifted from me. she obviously wasnt helping my situation at all. obviously i still feel bad about phil and what our future holds but hv is coming thursday and hopefully she will sort out some counselling for me and hopefully that will help some more.

Bex · Dec 14, 2007 7:27AM

Yes im sure it will help. Ohhhhhhhhhhhhhhh u poor thing wit regards d mum in law. My own mum is v v v religous and because me n oh live together she has onl y seen Leah once! His parens on d other hand are great. Good luck XXX

camlo · Dec 16, 2007 6:37AM

Hayley, so sorry to here things have been rough for you. None of us likes to think about a future without our loved ones and you have had to face the possibility. No wonder you're in pieces - even though it sounds like it is going to be OK relief can be a funny thing too. Perhaps taking control over the Mil issue will help too as you don't have to listen to her drivel anymore. Thinking of you xxxxx

Bex · Dec 17, 2007 6:40AM

Hope your feeling better Haley XXX

hayley_l · Dec 18, 2007 5:51AM

hi, feeling loads better, obviously still worried about the scan in january but if we can get that out the way and fingers x no changes then i think that will help us move forward a bit. amazing how i felt so much better since taking the decision to not see the mil, i obviously didnt realise just how much of an effect she was having on me. thanks for listening.

Bex · Dec 18, 2007 8:18PM

NO PROBS. Ur gunna have to listen to me winge at some point. so take it in hun XXXXXX

hayley_l · Dec 19, 2007 3:15PM

thanx bex. gonna winge again now coz the medication he is on for the fit that he had is causing him side effects and we have been back to the doctor loads and keep getiing fobbed off, so i sent him back today and she has just told him that hes impatient and give it time to settle. hes been on it for over 3 months now surely that is long enough! also been on the internet and it says that side effects from this medication should settle in a few weeks and one of the probs he has is serious and gp should be told straight away. also says he should be having regular blood tests to check the dose is correct and the medication suits him but nothing is being done. its like banging your head against a brick wall it seems like no body wants to listen or help they just want you out of their surgery so they can see the next patient.

camlo · Dec 22, 2007 6:10PM

Hi H, could you see a different Dr and explain how worried you are and how upsetting this has been so when you then talk about medication probs they will understand where you're coming from? Sometimes Dr's forget how serious a problem is to a patient - after all they get to see 20 patients everyday but you only get to see 1 Dr every blue moon.
Thinking of you, guess xmas morning is mad in your house??

hayley_l · Dec 23, 2007 9:31AM

hi camlo, yes we are going to ask to c a different gp coz we are getting fed up with being fobbed off. hv came round thurs and she was great really supportive and has given me loads of options and suggested that we ask to be seen at one of the big london hospitals, they should be interested coz what he has is so rare. feeling a bit more positive now and yes christmas morning is chaos in my house, pretty much like every other day really.

Bex · Dec 28, 2007 7:37PM

hey Hayley,hope u and family are doing ok,have been thinking about you and hope your all al right for now. Hope you get some good news from other hosp. Good luck hun,keep us posted or even just fro a moan xxxx

feeling low

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