Young family with brain tumour diagnoses

[Hopeful]

Hi everyone, I am 28 years old and my 32 year old husband was diagnosed with a brain tumour in December after having a seizure out of nowhere. It is unable to be surgically removed so he has had radiation and is now on chemo. We have an 18 month old son. We live in Sydney but both of our families live in New Zealand. I still find it very unreal that this is all happening to me and my little family. Anyone out there that can relate to my situation? xx

[WishingStar]

Hi, I was 32 when diagnosed with a brain tumour and a facial tumour (luckily that was benign and lead to the brain tumour being diagnosed when it was at a resectable stage). I have had one successful resection (although I now have some regrowth)- and I am learning to live with the epilepsy. I have a 3 year old daughter.I have been and continue to struggle with the what does the future hold, especially where my daughter is concerned, as my husband and I have had an incredibly topsy turvy relationship since daignosis (including separation). I have been given a time frame from anywhere from 5 years to 'if you fight it one by one' you just never know.....type scenario, and I just get....'I don't have a crystal ball' from my neurosurgeon in particular. So I have decided to live life as best as I can for now. There are others on this site who have lost loved ones to brain tumours in a much shorter time frame since I have been diagnosed. So in respect to them I will not complain. I do feel for you right know - especially as your family is away. I just wanted to reach out and give you a cyber hug so to speak. This site is a wonderful site to express your emotions and to gain support when you need it the most - you can make some absolutely wonderful friends that are going through the same thing that you are - so please, blog and continue to blog. Nicole xoxoxo

[Hopeful]

Hi Nicole thanks for your reply. So sorry to hear about your situation also. Its so hard when there are kids involved, sometimes I look at my son and my heart just breaks as I know that it is going to be hard for him to watch his dad go through this illness. Did you already have your daughter when you were diagnosed? We have always planned to have more children but all of that is on hold at the moment till we get a clearer idea of what the future may hold. And yes its a huge strain for a marriage to take, I am sorry to hear that you and your hubby have had a hard time (i can certainly understand tho). What type of tumour did/do you have? My hubby has an Astocytoma grade II. He has also been having a hard time with the seizures. He has many focal seizures a week and sometimes many a day - which all cause left sided weakness. He has just been started on epilum after being on dilantin, clonaz, and dexamethasone for months. Thankfuly the epilum seems to be making a difference and he has now been 10 days without a seizure YAY! I am sure there will still be plenty of ups and downs and more med changes etc but it is encouraging to find some improvement. Do you work at all? My hubby had quite a physical job and worked at heights so he has been told that he won't be doing that again. He has always been a very active guy and played rugby etc all his life so it has been so hard to watch him try to come to terms with all of this change. At the moment he is too lethargic and has quite a left sided weakness so he pretty much can't do much, sometimes he can hardly walk but on a good day we manage to have a little stroll. This used to frustrate him a lot but now he seems to have accepted it and is actually pretty positive at the moment. Gosh I feel like there is so much I could talk to you about! But this message is getting a little long so I will leave it there for now. It will be nice to hear from you and get a bit more of an understanding of what my husband is going through. Amanda xx

[WishingStar]

Hi again, I have an oligodendrogioma type 11/111 - the histopathologists were divided on diagosis it seems - with deletion chromosomes. Luckily (if there is such a thing) with a brain tumour (hehehe)I had a frontal lobe tumour initially that could be resected (as the benign facial tumour broke the cheek bone - lead to the CT scan that found the nasty one fairly early in the piece - another 3 months - well we all know how that story would of went). Funnily enough, I didn't initially have chemo etc as I have a private neuro who put me into some drug trials/research projects as they had such great resection and was relatively unscathed = I actually had more damage from the facial tumour resection at the time - and vertigo etc from that. Oh yeah, diagnosed xmas day 2008 (so my little girl was 18 months at the time). So I went back to work way to early etc (as a vet) and September last year started to have major seizures (found to have a small amount of tumour regrowth - they have decided to watch for now - but will eventually resect when bigger, - it is in the same place in the brain) and it has taken until now to gain control of the seizures. (6 weeks seizure free) - I am working full time (I own the clinic and have to as due to cost of running staff last year, really finacially strained, and cant sell as way to much in debt but working on it) but have vertigo, muscle weakness etc etc, double vision, and emotional outbursts from time to time (dont know wether they are just stress or the BT (brain tumour moments as my staff call them) and constant fatigue and a migraine type headache. Most of all I struggle with the loss of independance without a drivers licence - living in a country town with no public transport or even a taxi - so I have to walk - a lot - rain/hail or shine - even when I feel like crap. Most people think I am on a fitness kick as a long time on Dex and varying epilepsy meds stack on the weight - and my elderly clients in particular have commented - I saw you walking to work the other day dear - you must be feeling so much better - keep up the good work! - I just nod, feel like crying etc - but at least I can walk right now - that is important. Most of all I worry about my daughter and her future. You sound like a wonderful partner and support to your husband - it must be so difficult for you right now. Great to meet you. Take care, Nicole

[WishingStar]

Hi again, Sorry - just realised a major typo - I have no deletion chromosomes. Wish I had some of those - apparently they come in quite handy! Cyber Hug, Nicole xoxoxo

[smmee]

My husband was diagnosed with melanoma just under a year ago and we have a 1 year son and live in sydney. I know what you are going through as my parents do not live in syd (about 5 hours away) but I wish my inlaws lived in NZ. LOL they have not been much help. I find that no matter what happens you will be ok. Use this site to help you and dont be afraid to ask anyone for help.Siblings, friends neighbours and any one you can trust

[RichardSpencer]

Hello, my name is Richard. I was diagnosed with a brain tumour in 2000. It's been a long journey but I am still here talking to you. I have 2 children now (4 and a half & 19 months). Let me know if there is anything you want to know about my experience. I don't mind talking about what happened to me. Richard

[maddie86]

hi, im sorry to hear about your husband 😞 it must be hard when you have a child.. my bf has cancer and i sometimes think maybe we should have a child before anything happens.. but then everyone thinks i shouldnt.. its so hard, venting on this site helps me a lot.. i also just try and stay posative no matter what people say.. i guess its the only way to be.. best of luck xo your not alone

[Hopeful]

Hello SMMEE, RICHARD, AND MADDIE Thank you for replying to my post. I have not been on here for a while, I guess because I was trying to avoid thinking about everything for a while.....well it didn't work! Recently I had so much stress and emotion and anger build up that I broke down a bit and was not coping well at all. Things are a bit better now though as I am seeing a fantastic psychologist who is helping me so much. She has really made me stop trying to worry about the future so much and appreciate day by day. Hubby is fairly stable with his health at the moment so we have really had some time to adjust to all the changes and just learn to live with it (the seizures, lethargy, the day naps, poor mobility etc). We are getting used to our new 'normal' and just crossing fingers that nothing gets worse anytime soon! SMMEE how is your husband doing? I hope you and your little boy are doing ok xo RICHARD congrats on being here to tell your story 10 years after diagnosis. What sort of tumour did/do you have? Do you have many/any permanent side effects from the tumour or treatment? Do you suffer from seizures? That has been the hardest thing for us to learn to live with but it is strange how normal they are now haha. MADDIE sorry to hear of your boyfriends cancer. It is so hard to watch your man being ill isn't it. What type of cancer does he have? I know exactly what you mean about people judging you about weather to have a baby etc. We already have a 2 year old son but have decided to go ahead and have another baby (through IVF as hubby had to store 'the boys' before starting chemo) and I must admit I feel a bit nervous when we tell people as I am never sure if they think it is a good idea or not. But it feels like the right decision for us (not an easy one though!) we have thought long and hard about it and it just feels right. So do whatever your gut (and heart) tells you to do. I hope all is going as well as can be for all of you xo

[russ]

Hi Richard I'm new to this site so i'm not really sure what i'm doing haha. My husband was diagnosed with Primary CNS Lymphoma in January this year. He is still having treatment but we were hoping you could share your story with us. We would love to know exactly what happened with you, if you have any defecits and how you're doing today. Hope to hear from you 🙂