Coping with devastation when your life is torn apart

[Mares73]

Dear friends

Thought it was time I got back online & shared what's happened & apologize for not being around to welcome relatively new members. 

I had hoped this year I would do a lot of healing. But life can be taken off you. My husband who's been in remission from leukemia for nearly  five years we've had devastating news that it's back & acute & aggressive.Things have to move fast. Hospitalized from this time onwards for approx 9 months of intensive chemo & bone marrow transplant. Not a good outlook but somehow do I stop my mind thinking of the terrible journey ahead. Telling the kids was so hard. I feel broken in pieces.  Try to be managing in front of him but sit up & cry all night thinking how will I get through this? He's just 40 & I hate life it's torn apart & Im alone to support everyone when I'm in pieces &  queston can an manage this journey alone.

Also the civil case against the Priest who abused me is on my mind. The church have suspended him pending investigation. I haven't even written my statement so lawyers on both sides waiting on me.

And how do I get through all this & give my kids as much support as possible, watch my husband deteriorate & visit him everyday not knowing if he will survive, get through a traumatic legal case about being drugged & raped as a kid and try act normal & strong & be the one who holds it all  together?

 I try to be humble, I try to think of all who face pain but right now I am on verge if tears always, have moments I think I know I'm only holding on for everyone else or I think I'd be suicidal. I'm tired of being told I'm strong. I have a he'll of a year in front of me & I feel like life has stopped, I'm numb yet I'm hurting deeply, I'm weak when I'm going to have to be so strong.  And I don't have any real practical support. Once people know they tend to stay away. I have no close friends & where & how am I going to get through this year. I don't  want to see my husband get sicker every day when he could die from his white cells being destroyed by chemo & infection or what if there's no donor or he doesn't respond to transplant? How do I relive the abuse & trauma I went through as a young girl by a Priest I trusted how do I get justice & can anything help give me justice? Money? That doesn't come close to redemption. My husband asked me to promise I'd keep going til I got some forms of justice.

I am alone, terrified, no support.

Friends-Neil, John.Geoff, GA  & all I need you.

Mares

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[White_Rose]

Dear Mares

My heart just breaks for you. I want to help you but feel so frustrated because you are far away.

So I will talk instead. Tell me what you are doing today. What is on your list of to-dos? Talk about all the trivia, no disrespect, of your day and unwind a little.

Stop being brave all the time. We all know it's a battle you cannot win. You need to give away some of your anxiety. I know you have no extended family nearby but why not talk to your daughter/ She is 15 you say and must be as worried as you. Talking to each other may be a help to both of you, even if it means you cry together. You need a pressure relief valve. I don't mean only talking about your husband's illness. Talk about what needs to be done and how you feel.

Does your daughter know about the priest and the need to write your statement? Talk about this with her.  No need for heaps of details but she is old enough to understand and support you.  Strange though it may seem it could well help her too when she realises the pressure you are under. Teenagers are most surprising at times with their love, comfort and understanding.

From the tone of your posts I am concerned that you will collapse under the strain if you do not get that relief. And Neil is basically saying the same thing. If you feel guilty about talking to your daughter and in some way putting pressure on her, remember that she will feel more adult and responsible and probably pleased that you trust her so much.. That's important to teenagers.

Take care.

Much love

Mary

[Dennis38]

Hey Mares

hope this day finds you with your breath back. You say you  are just looking for a little hope. This will make you a bit mad and that is ok but stop looking for hope. The reason is while we are looking for hope we lose sight of what is right in front of us. We want to look "down the road" in hopes to find a cure/reason for what ever has its dark claws in us. This "looking for hope" drains us faster then running a marathon up a steep hill. We get so absorbed with "hope" and "needing hope" we lose sight of what is right in front of us and we simply stop living.

The best advice I can give you is two fold, live in this day...stop worrying about what may or may not happen. Easy to say, really really hard to do I know this. But as you deal with this day...the future will take care of itself. You will also find that you can breath a touch easier if you can make your self take each day as it comes.

Second thing, allow yourself time to stop and cry, to hold you head between your hands and simple let the grief flow instead of holding it in. Holding your pain in will not do you or anyone in your family any good.  This will sound a bit strange but maybe talk to your husband just a little about some of the "minor" worries you have, let him " fix"  a problem or two even if those " problems"  are minor things that you know how to fix..ask him it will make him feel a bit useful to you. Again kind of a man thing even when we are truly down and out it still make us feel just a little better to help out even if its just talking.

Wishing you a better day tomorrow then your last day. Always remember that we are here and to simply talk, get it all of your chest. It really does help.

[Neil_1]

Hi Maresy

Just wanted to say “Hi” and hope that the start to this week is a better one (or at least an ok one) for you and your fam.

Kind regards

Neil

[Mares73]

Dear friends well within 10 days we've gone from being a family with hopes & plans to my husband now hospitalized fighting for his life. The Dr & social worker spoke to me yesterday. They said my husband is now in isolation undergoing 5 days of intensive chemo. He will then have another marrow biopsy. If the leukemia cells are still present then a transplant won't be possible & it will be a matter of spending time with him while he's able before palliative care. Same with the transplants his only hope of survival. This is all happening so quickly I can't let it soak in. Dennis you say stop looking for hope or I'll lose what's in front of me right now. And yet what's in front of me now is two kids who aren't coping. A husband who is far sicker than he realizes because we need him to have hope & strength, the knowledge things are so serious & a civil case against a priest who abused me. Getting through each day is in the context of all that. I'm putting on the mask for everyone yet I'm literally  a bundle of nerves underneath. I really need advice/support on dealing with extreme anxiety that I wake up with, experience all day & night. It's awful & without the anxiety I think I'd be coping better inside myself. Any suggestions welcome from those who have lived on pure adrenalin.  Other weird thing is I spent all last yr looking for volunteery work I'd enjoy. Then now I've had a call that debt housing needs a site manager on on of the big tower estates in Sydney to be site manager & there are funds for programs I think would be worth running. Lots of autonomy given a volunteer role & it's exactly what I was looking for but bad timing. I'm meeting the management staff today.  One part of me things it's way too much to take on right now. Other part of me thinks if I could do a few hours each morning it may keep me focused on something else & have opportunities to not be so isolated. My family says a very ill husband, 2 kids & a court case is enough especially given I'd be working with very socially disadvantaged people. Not sure what to do. Selfishly I want to escape the pain sometimes as its all my life is full off. My son is so hateful towards me, hasn't spoken to me with anything but spite & anger telling me I'm a hopeless. He hates me & just wants his Dad. My daughter is closer & is wonderful although her anger is starting to show by blaming me & criticizing me for smallest things. I'm just so tired waking at 3rd & can't sleep again. I feel so alone. X Mares

[Neil_1]

Dear Maresy

{{Maresy}} – that’s me putting my arms around you and giving you the biggest supportive hug I can muster over this medium.  I feel you really need something like that now.  I hope you feel it.

As you know, I’ve got two children just slightly older, but I really don’t get the anger that your son is showing towards you (and nor your daughter’s recent displays either);  I don’t understand why they’re blaming you and also with the name calling.  That’s just wrong and downright hurtful.

Under different circumstances (as I’m sure you’d agree) I’d be shouting at you to jump at this Site Manager opportunity;   it does sound like a real interesting prospect.  A bit to think about though in regard to it.  You’re meeting with the staff management today – I just think there might be scope for you to give it a go.  It might be the thing to help occupy you for a while;  but then on the flip side, do you need to be on hand for hubby as well?   I’m just thinking out loud here, so please don’t be taking much of this too in depth;  because after all, this is you Mares – you’ve got to do what you feel is right and what you feel you’re able to handle.

Suggestions on living on pure adrenalin – well it can be done, but only in very short bursts and then when that runs out, you are zonked out for a while, till you recuperate.  So a more serious suggestion here would be to see if you can get an appointment with a GP asap and let them know all that’s going on;  and believe me, you’ve got heaps going on.  I really hope that you can arrange a visit very soon.

Thank you for sharing your latest update Maresy – please do all you can to keep yourself safe and healthy and KNOW inside that you are a wonderful person who needs to seek out all the help and strength from other sources at this time.  You know you have all of our full support here and if only there was something more we (I) could do, we would.

Kind regards

Neil

[Dennis38]

Hey Mares

First off I agree with Neil so giving you a tight hug as well. Now this volunteer thing might just be what you need. Sometimes it is easier to deal with other people's problems anb it gives you a break from your own. But can you break a way at a moments notice?

As for the kids anger unfortunately you are the nearest person to them. They are young(if I remember right) which means that you are the perfect outlet for the hurt and rage. Sucks I know but all you can do is hug them close and let their pain fear and rage wash over you. Do no put up eith to much name calling though you are still the MOM!

And yes I know that right now its very dark where you are at but find at least one thing to smile at even if its old family photos. It will help.  Take time out for yourself at least once a day to help recharge yourself.

[Mares73]

Dear friends well my husband had his week of intensive chemo to kill all his white cells in the hope new cells that went leukemia would grow back. But unfortunately what we were warned about has happened-he has a serious infection & no immune system to fight it. So that's the current battle to get past. Yesterday was the first day I didn't go hospital-i felt bad but I just couldn't face it. I'm so so deeply tired & very anxious. Living on nerves. My kids are absolutely awful to me-they get angry & blame me for absolutely everything. I wish I could have a break from them as well. I'm starting to feel down-think it's cause my life is filled with darkness & I'm scared because I can't afford to fall apart. I just want some time away from it all. But I've got to keep going. It would help if I had support around me but I don't.  The cancer council has a 6 week program witha counsellor so I've applied for that. Just to have someone who understands to talk to. It's getting hard like this morning I woke up & thought how am I going to get thru the  day when I don't want to face it. I can't let the darkness win yet I'm terrified that's now another battle I need to fight. Love Mares

[Mares73]

Dear friends the last few days I've felt so exhausted I haven't even wanted to go visit husband at hospital. I know I'm feeling down & very anxious & craving just being on my own for a while without everyone else's needs. My husband is now neutrophinic meaning his white blood cells are all destroyed & he has no immunity so very susceptible to infection. He's already had one severe infection caused simply by an ingrown hair. However he has now begged the Dr's to let him come home while we wait for his cells to start to grow back.  Problem is he is giving me huge list of demands for home ie trying to make it sterile so he doesn't get another infection but this is stressing me hugely. I've got kids & a dog. I can't be perfect all the time. He is very demanding & personally I think should stay in hospital where he has the best chance of avoiding infection as he has his own room & nurses on call. But I can't seem to stop the guilt that I should be Doing all the caring. I am also concerned at how flat I feel. I don't seem to have interest whereas last week I would of loved an hour to myself to read. I'm a bit lost as to how to handle the whole situation. Just feel worn down & don't even know what would cheer me up.

[Dennis38]

Hey Mares

First off a huge hug to you. Ok now then I am going to be brutally honest with you here, and do remember I am just a redneck and I call it as I see it. First a bit of info. my mother in law was dignosed with cancer and in about 2 week she passed away. Went in for a liver biopsy and she never came home. This is a woman who I actually liked better than my own mother. But as I had to tell my wife on several occiasions she had to look after herself first, then her mother.

In the case of your husband wanting to come home, I can clearly see it from his side of things as I HATE hospitals. But my dear you need to look after yourself. Which means the best thing for EVERYONE in your family is for your husband to stay in the hospital. Now he will rant and rave and say some mean things and that is just the frustration and fear coming out of him so do please try to ignore it, again very hard to do I know.

But as you stated you have kids and a dog and that is impossible to keep sterile he is just not thinking straight; The best advice I can give you is to talk to the doctors and they may be able to talk some sense into him.

The numbness is normal its a sign of the depression and stress setting in. Have you talked to the councilers you had mentioned in your earlier post or was that a social worker/ either way it would be a good idea to talk to them as they can give you a different view point as well as simply a physical shoulder to lean on and cry for a few moments. You and yours are going trhough some dark times but the beyondblue family is hear for you.

[Neil_1]

Hi Maresy

I haven't been so good of late either and this is my first post for a while;  I saw yours and just wanted to write you and say that I'm thinking of you.

This is a horrible time that you're having to deal with and the issues are coming from all angles at you.

The only good advice I can give is for you to read Dennis's post and then re-read it.  i couldn't have suggested things any better than Dennis has;  so I hope you've been able to read that and that it helped.

My thoughts are with you and your family.

Kind regards

Neil