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Our life with acute myeloid leukemia

Just a diary I'm keeping after we found out on 9th June 2010 (our baby's first birthday) that my other half has been diagnosed with an aggressive form of cancer and how we get by (hopefully I'll be better with this than I am with a diary :giggle: )

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0_Lisa_0
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- January 2019
Pregnancy reflection
   Tue Jan 01, 2019 8:50 pm

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+ November 2010
+ October 2010
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+ August 2010
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+ June 2010

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I come back to you with a guilt ridden confession

Permanent Linkby 0_Lisa_0 on Wed Nov 24, 2010 2:21 pm

I know that many of you will read this and judge me to be a horrible person because of it and to be honest I don't think that you have any real right to judge me until you can say you have spend time in my shoes and been through what I have these last 6 months. Much of this is self pity so if you don't care I suggest you stop reading now.
I would like to think that in the last 6 months I have been amazingly strong in the face of what I have had to deal with. This has forced me to change just about everything about myself, I had to get self motivation, be much more organised, more controlled, I had to learn to be a happier person and a good mum and I had to be more self aware, and I think I have succeeded quite well. The problem is it has also forced changes in my OH, and not in a good way, he was always a great person to be round, happy, not bothered about anything, the joker and positive. Now he is miserable, he's awful to be around, he puts his misery on me he's not the person I fell in love with anymore and I feel awful for it but he does nothing but complain and say how he can't do anything.
I know how awful I sound but no-one has asked how I am through this whole experience and when they have and tell them all the same thing: I grin and get on with it because if I don't the world may as well be at an end.
But now the end is in sight and OH doesn't want to see it and be grateful, he wants to complain about the fact I'm not at the hospital every waking hour, that I haven't phoned him to sit in silence (never mind that he also has a phone that rings out), that I haven't started a conversation about the fact that neither of us has done anything that day. I have a nerve if I let Austin sleep "late" when he has his nap, that list is endless!
Why can't he be glad the ordeal is almost over? Why can't he be happy that I have tried to keep some sort of normality in all our lives?
I know that I have to give it time when he comes out for things to go back to normal but honestly at the moment you would think we were back at the beginning and they had just diagnosed him as terminal. It has finally worn me down, I'm miserable and I don't need to be, I need to be happy and upbeat for Austin. With OH's coming home looming I just feel wore and worse, he has criticized me and my parenting far too much for someone with half a story yet he won't accept it when I tell him he is wrong. Although it sounds mean, he forgets that he hasn't watched out son grow for the last 6 months and 1 hour a day doesn't really qualify him to give me instruction. I'm sorry but the harsh reality is he will have to learn a whole new set of skills when he gets out.
I want my old OH back, the one with a happy go lucky attitude to life, I don't like the shell we have been left with, he's not a nice person.
Again I know how awful all of this makes me look but I really don't care, when you live for months being told how badly you are doing and how terrible you must be you realise that actually you are not the one doing anything wrong. I am holding it together for Austin but I'll be honest, I think I may be teetering on the edge now. What makes me a bad person is the fact that I can't help thinking of leaving. I am going to give it time but I don't know how much time I can give it. I don't want Austin in an unhealthy atmosphere and at the moment I know when OH comes home I will be down. It is going to take an incredible amount of control to ignore his jibes and the fact that he wants everything his way, he is used to having people at his constant beck and call and everything his way (and I'm not stupid enough to think I am not the same) but I can't pretend that I'm going to look after him, I have enough on my plate looking after Austin and the house.
My brain is starting to freeze up, all I can focus on is how to make things work when he comes home. It's just as well that I am so used to everyday with Austin now because I'm fairly sure I'm not all there and I feel worse for it, but there is no-one to talk to. I can't tell OH how I feel because when I do he can't just take it calmly, he takes it as personal insult that I dare to think any of these things and is quick to leap on anything he can say to make me feel bad and insult me.
Maybe I am just finally loosing my hold on reality and things wont be as bad as I fear they will be but I can't help worrying and feeling that my control over everything is going to take a battering as well as my emotions.
My biggest fear is that the man coming back to our house is not someone I know.

 

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Re: I come back to you with a guilt ridden confession

Permanent Linkby megansmummy on Fri Nov 26, 2010 9:40 am

Lisa, none of this makes you an awful person hun, and only people that have been through anything similar can truley understand and empathise with how you are feeling, people who havnt been through it can only judge based on what they know/have been through. Cancer changes everything for everyone that comes into contact with it...

Niether of you will be the same person that you were 'pre' cancer, it changes your outlook on life, what you believe in, your tolerance, your aspirations for life, your desire to change or not change things, the way you percieve people, the way you feel about other people who have seemingly easy lives...the list is endless...it changes absolutly everything...becuase its a huge life changing thing.

Your OH is a lucky man that he appears to be coming through this with good prospects for recovery...not everyone gets that chance but its easy for me and you to see that...he wont be able to even comprehend that...all he will be able to see is what he has been through...but in time that will fade as he returns to 'normal' life again...

No one can judge you for what you have both been through, whatever the decisions are that you make...you know that you have to do what is right for you and Austin and im pretty sure that deep down your OH would want the same thing...

Sending massive massive huge hugs through the laptop to you, this is such a hard time and i wouldnt wish it on anyone...i hope that your OH can find the person that he was before this all started and that you can pick up life where you left off before...at the same time some of the cnages will eventually be positive...something like this teaches you not to take life for granted...to grab it with both hands and enjoy every minute..but that wont come right away whatever the outcome :hug:

You know where I am if you ever want to chat/shout/scream or cry :hug:

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Re: I come back to you with a guilt ridden confession

Permanent Linkby winniewheresmypooh on Fri Nov 26, 2010 6:24 pm

Can't say anything any better than Tory but I did want to add that you are definetly not an awful person.You are being realistic and that IMO is a good way to be. If you thought that your OH coming home would be all roses and then found it hard that would probably be harder for you to deal with than admitting now that it will be tough.

From reading your blog I think that you have been and are an amazing person. Hopefully your DH will see that in time too.

Good luck with your journey. Huge hugs for you all.

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Re: I come back to you with a guilt ridden confession

Permanent Linkby fivefourfour on Mon Nov 29, 2010 1:20 pm

The hardest and bravest thing in life is to be honest. It doesn't make you a bad person at all. This has been a life changing experience for all three of you, (and extended family as well) and you will all need time to get used to your new life. In time, you will see your old OH more and more, but it will take time.

When you have been given bad news, you get used to that headspace, and hearing more positive news can take a long time to settle in. Then there can be survivors guilt and a sense that you're living on borrowed time etc. It doesn't excuse his behaviour, but it may explain it a bit...

You have dealt with all this so wonderfully well, and as winnie said, you are preparing for his homecoming in a realistic way, I hope that the reality is more positive and you can get back to being a threesome again.

Senind lots of hugs and best wishes. xxx

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