It's Not Fair

3 minute read time.

FormerMember

11 Jan 2012

Hi There!

I've never been a great talker. If something is on my mind I can sit for hours telling you what's wrong in my head when you ask, but I can't find the words to verbalise it. I find it easier to write things down, my mum jokes it would be easier to get answers out of me if she just text me even when she's sat in the room with me. I find writing things down easier to do, I can think about what I want to say, I don't miss anything out. I joined this community last week, so just to introduce myself, and the situation to anyone reading this that hasn't already read what I wrote, and to avoid crying as I write a fresh one, I've copied and pasted my introductory discussion that I posted below. Because as good, and cathartic, as writing may be at times, sometimes it just brings it all back to the forefront of your mind when you just need to leave it in that little box for a while just to catch a breath and feel normal.

It's not fair. It's not fair. It's not fair. Catchphrase of the week right there. I don't really know what to say, I don't know how much of a back story to give, or just what to say at all. I've always worried about my little brother, his dad (my step dad) was 57 when he was born, he was always going to lose his dad at a younger age than anyone should have to be without their dad. I never thought it would happen to me, its one of them things that happens on the news, that happens to other people. My step dad is fine, you wouldn't know he is 71 from the way he gets around. It's my own daddy that's not. He's only 48. He has never done anything wrong. I can't say that anyone deserves a brain tumour, but my dad REALLY doesn't.

He was diagnosed in February 2011 - he originally went a few weeks before but he was dismissed from the doctor's surgery with a virus!!! He went back two weeks later to see a different doctor (the doctor who has been the most amazing caring woman I have ever experienced in a doctors surgery) and was rushed to hospital for an MRI. He was still happy and positive. They booked him in to have it removed and told him he would be out by the weekend, and back on his feet in 3 weeks - he even went out and bought himself a bike to get around until he could have his driving license back. I haven't seen my dad walk unaided since February. I haven't seen him walk at all since about October.

Between 6 and 18 months I had in my head until 28th December 2011. It wasn't a long time but I felt like I had him completely ripped away from me on Wednesday. 2 months the doctor now thinks (it may be just a coincidence that he has gone downhill since they decided to end the chemotherapy but I have my doubts...) My dad doesn't know because we don't want him to give up, but all he does now is sleep. I've spent all the time possible with him since February, I've been the doting daughter by his bedside since the start, so I don't have my regrets, but I do feel that now when I know my time with him is limited, because he is always so tired, I can't spend those precious moments with him as much as I would like anymore.

I'm so lost. And confused. And angry. And upset. And feel utterly hopeless. I know it's tragic at any age, but he is just so young. I need him. I don't know how I will go on, or deal with things in life without him. It's just so unfair!

FormerMember over 13 years ago

I am new at this myself, so I can't talk much from my own experience. But I wrote to someone who is a loving, caring woman and she said a few words that helped me to realize that I have a right to feel what I feel. I can not express myself as graceful as you or her but the part that help went something like: you are grieving. You are grieving the lost of the life you had, you are grieving the future you believed you would have and you are grieving your husband (your father) even though he is still here. You have the right to grieve. You are allowed to be angry. Its okay to feel what your feeling, just be careful how you express it. You can't run around punching things. If you feel like you need to scream. you can, just pick where you do it carefully. Choose how to let it out whatever you need to but don't do it in a way that will cause harm to you or anyone else. I am much newer at this then you are. It's only been part of my world for a few weeks but feel what you feel. LOVE with all you have. I am horrible with writing things but you are impressive. These blogs have helped me greatly. So many kind people to turn to. They share what has to be the hardest thing they have ever been through. Keep writing and let the ones who know what it is like, help you. They have helped me. GOD BLESS and your family will be in my prayers.
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FormerMember over 13 years ago

Hi Lil Bit. Thankyou so much for your comment, it means a lot that not only did you take the time to read but then aswell to comment and share what you have learnt yourself. You don't have to be an eloquent writer to help people :-) Thankyou for your prayers, it is something that I struggle with now, my anger is with God at the moment, I feel lost and helpless. Without knowing your situation right now, I hope you are doing ok and coping as well as you can through such a difficult time
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FormerMember over 13 years ago

VixyLou, this posting is helping me to realise just how awful the next few months are going to be. My mama too went to the Doctors and was told on more than one occasion that she had a migrane - some bloody migrane! it was her tumour and no one picked up on it. May I ask you, is he aware you are around when he sleeps? was it a gradual turn of events? how do you cope with feeding him? If its too hard for you to answer these questions then don't. I too send you strength and support via email. I am going through what you are and it is horrible and undignified. I hate a lot cry a lot and want to die a lot. Bless you xx
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FormerMember over 13 years ago

Sweetie, don't wish to die. It is the last thing your mama would want! I know I can't preach, I've hated when people tell me to be positive and try to give me advice when they have no idea. I have no idea how it feels to be so low, I have been really really low but I have never had those thoughts so I have no advice on how to cope with them but with all my other thoughts I have found talking gets me through them. Talk about how you feel. Talk to anyone that will listen, that's what I've been doing for the past few months. If they ask, I tell... it gets it out there and although a lot of people will talk about things they have no idea about, every now and again you will heard words of wisdom that will help adjust your perspective.

In regards to my dad, he sleeps a lot now so I don't think he is aware so much any more but for a long time he would have his eyes closed but open them at the slightest movement, he was very alert to people around him. It was gradual until Christmas. Living with him I could see the changes more than other people could, but it was still a massive shock when he took a turn for the worse on 26/12/2011. He seemed to go downhill very quickly and now he just sleeps a lot. But even now, even though he sleeps so much, I grab every waking moment to be with him, and to read our childhood bedtime book to him. Its keeping those memories, and feelings alive that get me through at the moment

Victoria xx
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