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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[Neil_1]

Hi Maresy

Just a quick post to say that I’m thinking of you and I know that there’d be so many others on this wonderful site who are thinking of and concerned for you also.

I would assume that things are still very much in a horrible situation for you and that you would be doing it so tough.

I just hope that you’ve been able to find some kind of support for you – someone or something that you’ve found that has been able to ease things, even the tiniest bit for you.

Also please don’t feel to write back – I’m just sending this, if you’re on-line, to let you know that you’re in out thoughts.

Kind regards

Neil

[Mares73]

My dear Neil thank you so much for being such a wonderful support. No I don't have external supports except for a trauma counselor that I started seeing as part of the requirements for my civil case against the church. Yet we haven't reached that topic yet as she's so concerned about what I'm already going through. We see the haemotologist tomorrow for biopsy results & that will give us a much better idea of prognosis. My husband has had the maximum rounds of chemo. A successful transplant-which is a big ask-is his only real hope. However if we find out the chemo hasn't worked I'm not sure if they will do a transplant.

I've gone from being superwoman to an anxious wreck the past week. I feel the darkness settling in & I can't fall apart. I'm the glue dealing with everyone's needs & emotions. My biggest feeling is that of wanting to desperately escape. I want to run away & hide. It's been a year of fear, uncertainty & living in the cancer bubble. There's so much still ahead & I'm struggling badly with anxiety. I had to take my husband for his biopsy tests last week which are painful as they have to cut through bone to get some marrow & then insert needle in spine to get fluid which leaves him with terrible headaches for days. I was holding his hand whilst he struggled to stay still but in my mind I was fighting thoughts that I wanted to run out the door. Guilt but also fear.

I think of you so often & have a feeling you haven't been feeling good for some time. Probably since you lost your mum. I know your not one to open up about yourself but please know I care so much & I think of you & send you hugs. Your one of a kind Neil & the best friend anyone could have. In my thoughts, Love Mares xxx

[Neil_1]

Maresy,

Can I ask a question?  A silly thing to write, cause due to this mode of communication, I should just send off that question and await your answer. 

But me being me and also the fact that it would take too much time, while you then respond with, ‘Yes’.

And I respond back with ‘oh good’.

And then you respond back with, ‘now what did you want to ask me’.

And I respond back with ‘what?’

Cause you see by that time, I’d have forgotten all about the question that I wanted to ask you.  Confused?  I hope not.

So, back to my question:

With all that you know now re:  going to the Royal Commission and telling your story and now with all the aftermath that it’s bringing, do you feel that having done this has helped you?   I hope the answer is Yes, but from the things that you’ve mentioned, it sounds like the process could still be handled in a much better way.  I’m just wondering whether there’s any scope for you to write some kind of letter to someone who is either in charge or who is high up in the process, to detail out your experiences of this and to possibly suggest ways that they could improve it ?   I could be way off the mark here and please tell me if that’s so – but I was just thinking that out of all the crap that you’ve got happening, I thought that this process hasn’t been the best kind of situation for you either.

I couldn’t imagine the pain and difficulty that your husband is experiencing and on top of that, you’re there – just another major stressor for you.

Why does life deal such horrible blows for some people.  And yet with others that I know, they pretty much journey through life and maybe the most difficult thing they’ve had to encounter so far is like a sprained ankle or something like that.

You’ve always been amazing at picking up how I am or have been – and yes, things have been crap for me for much of this year and things are quite stressful on a number of fronts, hence why I’ve been a little quiet on the posts here of late.  But I’ve got an awesome psychologist who I’m seeing fairly regular at the moment and that’s helping to keep things relatively ok.  That plus I’m churning out some mega workouts at the gym of late as well and also pumping out a fair bit on bike riding also.

Anyway, I hope that this message helps to lift you even a smidgeon and that your upcoming weekend is as good as it can be for you.

Kind regards

Neil

[Mares73]

Dear Neil & Mary I think of you both often & feel so privileged to have you as friends. The fact your both doing it tough & haven't had a great year to date-yet you find the time to come here & support me. I am blessed.

 I'll start with me. I think I've coped to date by running on adrenaline & have always been good in crisis situations perhaps because since I was a young child I've had to be vigilant due to my father's abuse, caring for my siblings whilst my mum battled breast cancer, the abuse by the Priest, the stranger rape, dad's suicide & it goes on. But I'm feeling overwhelmed & hubbie goes in hospital for a lengthy period & bone marrow transplant Tues & I have to be there for him & the kids. What's at the crux of getting me down is I have so many chores to do & each day I procrastinate & am immobilized & can't do anything productive. My room is filled with 8 baskets of washing & I can't seem to get it done. Then I beat myself up, promise myself I'll do it the next day but the day comes & I sit worrying about all the chores instead of doing them. I hate this lack of motivation, feeling immobilized, achieving nothing. It's amazing if I even manage to get dressed properly & find it impossible to leave the house. I sound pathetic.

 Neil you are an incredibly giving, intelligent, funny & amazing person who Im so lucky to have in my life. It's been a few years now & you've been beside me all the way. How can that be measured it can't because it's beyond anything.You have endured unimaginable pain & tragedy yet you keep on fighting & giving. I don't have words to describe your influence on me.oh & yes I found Laces post & wrote to her. Now I know this has been a very hard year to date & gee I hope with all my heart it turns around. I know you have grief on so many levels that it will take time. Oh can I ask did u r dad have a transplant? Apparently the main cause of death is infection. Don't worry that you'll upset me know the risks & mortality rates. So alas pls know your in my heart & thoughts always.

 Mary you have been a loyal, caring wonderful friend whose also stuck by me. I can't thank you enough for ur support & wisdom. I'm so sorry to learn about u r breast cancer ordeal. What strength u have to survive that & keep fighting. You are inspirational.You are 1 of the very special friends I say thank you for each morning when I try think of positives in my life. 

 I've asked a few questions re motivation & Neil Re leukemia.  

Love Mares x

[Neil_1]

Hi Maresy

My Dad had two heart operations also, but neither linked with his leukaemia … he had to have a valve in his heart replaced;   first time in 1982, his valve in his heart just collapsed and it wasn’t like a heart attack or anything, he just pretty much lost his memory, which is how it all got diagnosed and assessed.   The day before, he backed the winner of the Melbourne Cup – Gurner’s Lane;  he was so happy and I’d backed Kingston Town and I was pretty annoyed.  The next day, he couldn’t remember a thing about it.

Then when his first valve replacement wore out, he got a newie and that was in 1997.

I went down to St Vincent’s to be with Mum and Dad during that time and to be waiting around during that day of the operation was, wow, a long experience and then to see Dad that evening, with tubes everywhere and as white as a sheet, was pretty confronting, but to see him through the worst of it and how he pulled through and grew stronger.  Things that will live with me forever.

He contracted leukaemia, from memory around 2003 and he battled with it and fought it off for as long as he could, till 2007.

So I suppose in a way they were transplants of the valve of his heart – his heart was fine and strong, but the collapsed valve initially was just a condition that he was born with and that it just ended up giving way – as far as we were told, for no particular reason.

With regard to the washing – I know you’ve probably thought of this, but what about cutting out the actual number of baskets that need to be done, and just try for ONE a day.  Try to see if the last thing you do before you go to bed, is to put a load of washing on.   Then after the morning breakfasts, etc, make a pact with yourself (or damnit, make it with me, Maresy – make a pact with me) that you’ll then go and hang the washing out.   Collect it in of a late arve, OR see if one of your children could help you with getting it off the line??

No doubt they’ve got a number of items in the wash as well – many hands make light work, and if the three of you could then sort through the washing, folding and the like, it sure reduces the time.

Maresy, don’t worry about ironing – it’s a much over-rated activity anyway, so just fold them the kids take theirs, you take yours - done.

Load Number One cleaned, folded and put away.

I do have another suggestion on this, but I’ve run out of characters.

Neil

[Mares73]

Well hubby had bone marrow transplant this week. Now due to the pre transplant heavy duty chemo he is getting infections & being fed by a tube. Still so far to go. I've really not been myself last few weeks, can feel the black dog dragging me down. Haven't been organized at all. Have eaten takeaway every night, have felt exhausted, house is a real mess & I feel like I'm living in chaos. Not up on what the kids need done for school, still piles of washing. I spend days at hospital & come home good for nothing. All my energy goes into my hospital visits & there's a list churning in my head of things I need to do but I procrastinate or feel too tired for anything. I did a big shop last week over $350 of food & most of its gone off which is shameful. I need to get on top of life outside of the hospital. I don't know why I'm finding this almost impossible. I haven't been able to visit hospital this weekend due to a crippling migraine so now I'm not only living in chaos but I'm struggling to get to hospital. I'm an anxious wreck of a morning not knowing how to find anything to wear as everything is in baskets washed but not sorted. I feel very very low. My kids have picked up on the chaos & my 10yr old son is telling people he's sick of eating takeaway because his mum doesn't cook. This means I'm churning through money way too fast & just found out my husband's employers insurance company will only continue to pay his salary until end of August as he has relied on it previously when he was I'll first time. This means we will have to access his super which is only $60,000 & with rent $700+ per week & no assets we are going to face financial difficulty at some stage soon. Even if my husband gets through this period the Dr's say it's at least a 12 month recovery high risk period so I have to cut spending dramatically.  And anywhere in region of hospital has high rents & given it provides security for my kids. I'm just managing to be at hospital everyday to support my husband. How am I going to support my kids & get on top of everything? I feel like I'm drowning, struggling to meet each persons needs, cook & clean & just do basic daily tasks ..I  feel like  I can't manage it all. Yet I have to. And whether I do manage it all or not-i just know I'm going to fall apart at some stage. I hate to sound so negative. Guess that's just how I'm feeling. Love mares x

[Neil_1]

Hi Maresy

I’m sorry it’s been a few days since you’ve posted and I haven’t replied back as yet, but with your latest post, I just had to try and get my words together for you.

I can’t tell you how badly I feel for you and wish so much that there was something that I could do – even if just to help in some small way.

You’ve got things going on that are massive for you to deal with and as we’ve found out, there’s little help that you’re able to obtain – little or next to none, I think I heard correctly.

I wonder and doubt very much, that your 10yo would also go on to tell his friends that his Mum is doing this because she’s absolutely exhausted and has her husband extremely sick in hospital, where she’s spending so many hours of each day, being with, plus that she’s trying to cope with all the work needed to be done in order to get me and my sister cared for, ready for school each day, fed and watered each night and that all of this is really wearing her down big time.  I wonder if he does say that?   If he does, I sure hope that he’s able to punctuate his response better than I did, otherwise, he’d run out of breath, as I didn’t put one full stop in that little rant above.

Maresy, coming here and unloading I believe is a good thing.  It sure sounds like you don’t have too many other avenues for support or any ‘sounding boards’ of people who you can vent to in person – so please come here and do that as often as you wish too.

You KNOW we’ll be here for you.

Kind regards

Neil

[White_Rose]

Dear Mares

Sorry I have not written for a while. As you say, life gets on top of life and all good intentions crumble.

I do wish there was something practical I could do for you, such as folding your washing. You don't live next door to me in Qld do you? Wouldn't that be useful?

I am going to suggest that you stop daily visits to your husband for a while. Make the visits every two days and explain the amount of work you have at home. Also explain it could be a cost savings with fares and being able to cook meals again. In fact you could cook several meals and freeze a couple for later. As Neil says, ironing is vastly over rated. Only do the essentials.

I understand how depressing it is to come home to an untidy house and I would hate it, so there is another reason for fewer hospital visits. I do understand your husband needs support, but you also need to look after yourself. Don't stay at the hospital all day. Come home and have a nanna nap before the children arrive. Mares you know you need to take care of yourself. How many times have you said that to other people? Now take your own advice.

I've finished my lecture, but I am concerned about you. I'm fine with the breast cancer now. It's a case of five years of follow up care and that's OK. I just started work with a domestic violence psych. Not sure how far I will get with this as I am so nervous about the whole thing. Second visit was today and I was so cranky and felt so embarrassed as I turned up a day early. Talk about anxious. Anyway I am keen to get through whatever process is going to happen but the psych is saying we need to establish a relationship. Trouble is, she is very nice and I feel guilty for arguing. However, I do want to cut to the chase. Having deep and meaningfuls with psychs has lost a great deal of appeal.

Take care of yourself.

Mary