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]

Dear Maresy

Great to hear from you, but I follow that up straight away with I’m so terribly sorry to read all that you posted and what’s now happening in your life.  The news that your husband has received must be so hard to comprehend for all of you.  I’m trying to drag a positive out of here and I really hope that with him being just 40, that must count for something, in that his body might be able to assist with the fight that will be needed.   But I extend my best wishes to you Mares and to your husband and to your family.

I was going to mention/suggest that would it be possible to put the written statement regarding the priest investigation on hold for a while;   as you’ve got some major family health concerns happening at this time, but I just wonder now about this as:   (a)  it could prove to be a bit of a distraction for you to be able to try and do this so that you’re not focussing on the fight that your husband and yourself have ahead of you;  and  (b) your husband also mentioned about you to keep on going with this to get the justice that you so richly deserve.

But Maresy, there’s are little petty, small issues, these two.  They’re massive biggies – but you didn’t need me to tell you that.  I just so wish you had some kind of alternative support options for yourself – someone to have a coffee with and to have a bit of an unload;   or someone to come around and help out with the kids of an evening, etc??    I’m just wondering whether Salvation Army might be able to help you out during this time?   I just had a thought that they may be able to supply someone to come by and help out from time to time – just to give you a bit of a breather;  bit of a break?

And other supports Mares – professional ones, like your GP or a psyche that you have (or are) seen/seeing?   Someone like that may also be able to provide you with some other alternative suggestions for sources of one-on-one support.

I really wish I could provide something more helpful and useful for you.

Kind regards

Neil

[White_Rose]

Dear Mares

I am so sorry that you are in this awful place. After years of hope and remission to have this drop out of the blue is horrible. Like Neil I want to give you a cuddle and chat with you. Accept my cyber hug anyway.

Do you still see your psych? This is one area to take as much advantage of as possible. Here you will be able to talk freely which I appreciate is not possible with your children. I feel you do need a safe place to talk, a sanctuary for a small amount of time where someone can help with your struggle. It's definitely worth making time for this.

There are so many things for you to do and I can imagine lying in bed trying to think of them all at once. Can I make a suggestion. Make a space for yourself for an hour or two, alone. Sit with a piece of paper and write down all the tasks you need to do. I hear you groan. But putting it on paper will help crystallise what's happening.

I expect your mind is going at a million miles an hour and getting no where. So getting a framework of some sort will help and also stop the chaotic thoughts. Once you have the list, then prioritise the items. When they are completed you can cross them off or tick them. Now that's really satisfying.

You need an anchor at this time, something to help keep you grounded and stop your head exploding. Well maybe that's bit too far fetched but I bet it feels like that. You need to feel in control.  Perhaps even a timetable for the day though this may be going too far for you. Anything that helps keep you together is good.

Also, stop borrowing trouble. You are worrying about what might happen and that is very natural but not helpful. The world may end tomorrow but we are carrying on today because we don't know. It's the same with you. You don't know what will happen and trying to prepare for every eventuality will drive you nuts. I know it's easy for me to say and hard for you to do, but please try.

Sit down, have a cup of tea (or whatever), take a few deep breaths and concentrate on realities not maybes.

I hope this is helpful. I understand how overwhelmed you feel, how unfair life is and your worries about the future. So try to keep a grasp on what is actually happening and leave the speculation alone.

My love and prayers go with you.

Mary

[Mares73]

Dear Neil & Mary thank you for your care & support. Mary I know I will be relying on lists each day to get me through. The saddest part for me is I'd felt distant from my husband for quite a while-him coping with pressures of work & me trying to manage my depression & the trauma of the royal commission etc. Then a few weeks ago we talked for hours & opened up & both felt the love that's endured through 20 years of marriage.  So both of us & the kids had a :vow renewal" ceremony where him & I renewed our vows & told kids how much our family means to us. It was so raw & intimate & special. We made plans for this year. My daughter is 15 & my son is only 10. We were so close until the news that ripped apart our hopes & dreams. My son is very sensitive & always been closer to his Dad. The only emotion he is displaying is anger. He won't talk to me & it's very hard. I will organize counseling for him

.My daughter has just started year 10 & I'm watching her closely as she's always been so very mature & responsible. But I've caught her drinking twice so I'm so worried for her. 

I don't even know how we will survive on life insurance as no sick leave covers 9 months.

The specialist is top in his field. He said without immediate treatment the leukemia would travel very fast. He said 2 things could kill my husband along the journey too much chemo so it's possible to die from infection & then he doesn't respond to the chemo which he has too for a bone marrow transplant. And if he makes it to that stage his body has to respond & not reject the new bone marrow. It's acute lymphoblastic leukemia.

As for me I know I'll have to function on auto. The kids need one parent whose ok. I'll have to find the strength. I wish I didn't have the trauma of the legal case against the priest but I'm going to do it cause my husband said it was important to him I get justice.

Justice? I want my life back. Nothing can give me what that Priest did. And nothing I do can save my husband. I'm literally sick everyday. I feel in shock. Overwhelmed at how I feel, conscious of being positive around my husband & worried about my kids. We both have tried to give our kids a life full of love instilling confidence in them. Never wanting them to feel or experience the trauma we both went through as kids. But life's dealt a hand I cannot control they are traumatized in a different way. 

How will I survive all this & keep mentally strong. I can't afford depression or anxiety I'm the anchor.

[Neil_1]

Hi Maresy

Wow, that sounded so positive and special – the renewal of vows that you all did recently.  It sure did sound so very special.

But then to receive the awful news about the leukaemia must have knocked you all for a six.  Your son and daughter, so incredibly special and loved by both you and your husband, as you say, are needing to be watched quite closely in the upcoming period and hopefully with lots of love and care and support, they may be able to get through this in their own way and without needing to resort to what it appears they may have reached out for already.  But I can only imagine how much that must be playing on your mind at the moment as well – with so many other issues that are pounding at you.

With regard to the treatment for your husband, it will be a matter of following the advice and suggestions given to you by the specialist and his treatment team and hope like crazy that things have the desired effect and that it can really make a major dent into this awful disease.

Mares, is there no other kinds of support that you could call upon to assist you – even for a short while?   This upcoming period for you is going to be very difficult, and I really think that you will need to be looked after carefully also, otherwise, things could become even more difficult for you.  I’m really concerned for you.

Kind regards

Neil

[Dennis38]

Hello Maresy

First you are in a very rough spot in life I can not imagine the pain that you and your family are currently going through so just some advice on how to survive. First with your son, he is going to be angry for a long time to be perfectly honest, its kind of a guy thing, best thing to do is as you said get him someone to talk to and this may sound a bit hard but try not to mother him to much. Be there when he cries, and be there when he lashes out. And he will lash out again its kind of a guy thing, when he does lash out A: Understand its frustration even if he spouts off at the mouth..B: Do NOT excuse it though make sure that he knows that yeah he has a right to be mad but he does not have the right to take it out on anyone.

Now as for you, instead of looking forward and thinking the dark thoughts that ANYONE would be thinking, the best thing to do is look to the next day. Do not think about next month or four months down the road. The best option for you is to kind of duck your head just a little and take one day at a time. Be there for your husband and your kids, but also give yourself the same rights that everyone in your postion has, and that is to feel upset, sad, angry, weak...expect those feelings LET yourself cry do not try to hold it that is a destructive path.

Then when you have cried yourself to sleep..wake up in the morning, wash your face, look yourself in the mirror and simply say. "I can do this." Put your brave face on and move forward. You say you are tired of people telling you that you are strong, I get that as I have had those same feelings that I would rather be weak and cry. But that thinking is wrong, it takes a strong person to cry, its easier to push the feelings deep inside us and ignore them until the pressure valve blows.

It takes a strong person to cry, sob, scream and THEN pick yourself up, blow your nose and move forward. One good tip is to try and find at least one thing a day to laugh at. It will put a smile on your face and warm your heart.

Best of luck

[White_Rose]

Dear Mares

How are you today? Not much different than yesterday?  But you have got through another day and as Dennis has said look to the next day only.

I know you are fed up with being told you are a strong person and I agree. It almost feels as though you are being told you don't need help because you can manage. Well that's not the case. We all need support, comfort and help. So if you can find someone to help a little then lean.

The renewal of your vows sounds wonderful. One good thing about this is that you had the opportunity to say you loved each other and that is fantastic. I feel inadequate because I do not know what to say. I am not the one in your position.

So please know I am thinking of you and that I am sending you lots of hugs, good wishes and prayers.

Mary

[Mares73]

Dear friends thank for your support. Neil I have a feeling you know a lot about experience of leukemia-i can't remember if it was your brother? But I think you know how we are up against a real battle now he has relapsed within 5 years. Mary & Dennis thank you for your practical advice. I think I'm still trying to get my mind around what I face this year as I have the case against the priest as well. Thee specialist is highly regarded so I'm thankful for that but he's blunt & his words keep going around my head. I said to him if you tell us N isn't going to make it longer term we would live so diffrently -live& experience things together we've always put off. And his reply was yes I suggest you do that & that's why I'm allowing N to have a week with you as a family before he comes into hospita. And he also said  like walking & knowing there's bombs planted underneath your path ie he has to respond to the chemo to have a chance. If he can survive that then next bomb is responding to bone marrow then next bomb hoping the leukemia cells don't go to his spinal chord in the meantime or no chance as that means it's gone to brain. I know I'm going to have to try focus on each stage & watch kids closely & still try get some for of justice for me from the church. But right now my stomach is in permanent knots-so anxious it's hard to even breathe properly. So many practical things to do  bank accounts, a will, bills etc all in my name. I don't have close family or friends to help me. we are due to sign a renewed 2 year lease so I won't have to worry about that. I feel so sick. Yet I know I'm good in a crisis on auto & push through my pain for him & the kids. Right now I wish I wasn't so terribly anxious. I'm a bundle of nerves ready to jump at anything. The anxiety is so pronounced. It's overtaken me. I'm not too concerned about my depression as I'm great at keeping it together for others.  I've spent a lot of my life holding in pain. I'm more concerned I write lists etc because I will cope by running on nervous adrenaline. my fear & pain will be just below the surface & hopefully I can be positive for him & then like last time walk out of the hospital tears overflowing & sit for 5 min b4 I have to get kids from school & take them to see him.

I am holding in deep pain, fear & anxiety. I will be there for him & kids. I'm good at hiding how I feel. I will also have to be strong for the case against priest. 

 I just want real hope but there's none.

Love Mares

[Neil_1]

Hi Maresy

A good memory Mares.  🙂    But it was my Dad who I lost to leukaemia and as you know, in October, I lost Mum to cancer.   The hospital (doctor) situation sounded similar to yours.  About a month prior, Mum had her last specialist appointment and my bro went with her – the spoke about how it had advanced, etc and that the specialist said that there was now no point in doing any treatment as it was too aggressive.  The question was asked about whether the treatment would help – the answer was “It would possibly help by extending things by a day … possibly”.   Blunt yes, but still, good to know;   so that way at least Mum didn’t have to go through the ordeal of treatment that most likely was going to cause more discomfort and issues, etc.   In other words, it would have done more harm than good for her to have it.   Sorry for the story on this.

At least Mares, it does sound like you’ve been given a lot of information about this so that you’re quite versed in what you’ve got in front of you – and as you say, yes you have a real battle in front of you (both).  Again there’s so little we can do as forum members, forum friends, pals, mates on this site;  but I do want you to know that you’re in my thoughts (and your family).

I think with all the things that you’ve got on your plate at the moment and in the coming weeks/months ahead, you may need to build sides on the plate to keep all the damn things on without things spilling off.

I also think (hey, I’ve just realised that I’ve thunk twice in the last two para’s – I think I should have a lie down, as I’m feeling quite light-headed and dizzy).  Now where was I ??   Oh yeah, thinking … thinking about what?    Ok ok, I think that the more that you can write here WHENEVER you feel the need to will hopefully be a good thing for you.  Cause unfortunately it doesn’t sound like you’ve got overly many ears to listen to or shoulders to lean on;   but Maresy, I want you to know that we’ll be here and we’ll do our very best to support you through all of this and beyond.

Kind regards to you my special friend

Neil

[Mares73]

Neil you truly are a special friend.  Today I've woken & am struggling to breathe  normally. This severe anxiety is really affecting me & making it hard to think straight. The reality is as you & others have said-i will need to think short term & get through each stage. Yet although I think Dennis said there's no point in thinking "what ifs", the reality is that my future & the kids future is now totally unknown & whilst things can happen to any of us, I've been told by my husband's specialist the challenges & high risks & basically that it will take almost a miracle for my husband to survive the year ahead of him. I know I will watch him deteriorate as the intensive chemo wipes out his immune system. Watching that is heartbreaking.  I know we will be living with the anxiety of whether the  chemo will work so he can have a bone marrow transplant. How could we not be anxious when he could die before reaching the stage where  a bone marrow transplant is possible? And finding a donor if we get to that stage-the anxiety of whether his body will accept or reject it. Hope & despair. And if he gets to that stage there's another 6 months of being on steroids & immune suppressants.  And if he is lucky enough to come home during that stage & just go for daily transfusions-i have experienced him being on steroids. But last time thankfully it was short term. Because I can't describe the et son he becomes on sterpids-no sign of the husband I know just extreme anger & aggression.  Six months of that & it scares the kids. But he can't help it-they just totally change his personality & we are all on edge because of his outbursts of extreme aggression. It's frightening, he becomes irrational, unable to have a conversation, just so angry, demanding & it's exhausting. So where is there any respite? Where will hope come from? Watching him daily sicker & sicker, watching the kids pain & bearing the brunt of their pain & anger. I have no hope because I know the road ahead is all at the mercy of Dr's waiting for some sign of hope. Getting through each stage is what I have to do but the reality is right now I'm facing one of the darkest times of my life. This year has already been determined & taken from us. I wish it was me. I wish I had some control but I don't.  And I'm sick to the core. I'm existing on nerves. I'm struggling to breathe. Yet I'm hiding it all trying to be the best wife & mother. Yet I've never felt so alone, afraid & desperate. I wish I could just breathe.