Who really understand

Hi Sunsarah,

I hear you and I feel your pain.

My late wife battled for 7 and a bit years before it just became too much for her.

In that time, while we tried to continue as normal a life as we could, I know that I started grieving about 2 years before she passed. In an odd sort of way, I think this actually helped me prepare for the end as it seemed to take some of the rougher edges off my emotions. My grief counsellor, after 1 session, told me that she had rarely seen anyone so deeply into the grieving process so soon.

She asked me, "How do you do it?".

I told her, "I wasn't given a choice.".

To a large extent, that is exactly how cancer impacted Margaret's, my and our lives. It took some of the choices out of how we chose to live our lives. But in doing so, it gave me the opportunity to take the one choice I would never have voluntarily picked - how to best care for my darling.

At the end of each "day" (usually around 3AM) i would give myself 5 minutes to look back on what I had done today - for Margaret, for our family and for myself. These 5 minutes were precious to me as it proved that I still had some worth or value beyond cancer.

The only advice I would offer is that it's OK to hate cancer. It's an insidious bastard that does it's level best to get in between the two of you - like a petulant teenager shouting "Me, Me, Me, Me!!!". Hate cancer by all means, but don't let the hatred of cancer come between you and loved one. Even when emotions run high, the person you love is still there.

Hate cancer. It may very well take your loved one, but don't let it take your love.

Hoping this helps,
Ewen :-)

P.S. I'm not crying, you are!!

Hi there I'm sorry you are having to go through this. I totally understand how you feel. My mum has around a month left. We were told 4 months ago about the time limit. That is what makes it the hardest as you feel so out of control. Other people cant understand how hard it is for you and how many emotions you go through on a daily basis. You feel like you are floating about in a bubble and it's not real. The tension between your family can be unbearable at times as everyone is dealing with the news differently. The only advice I can give you is to focus on making memories with your hubby and taking one day at a time. Be kind to yourself and take some time out for you. You will be grieving already. I felt the same the day after we found out about mum. I have to remind myself she is still here and to make every moment count whether it's a hard day or not. And to get the most support out of your gp and McMillan nurses. They have helpline numbers if you need someone to vent to that isn't family. I wish you and your hubby all the best. Always here if you need to talk just private message me. Lots of love to you both 

Mhairi xxx

Thankyou for your reply 

helps to know I am not alone 

sending my love to you and your mum 

here for you too if you need to talk 

xx

Hi panic 

Thankyou for your reply it’s good to feel that my feelings our quite normal I suppose we are adjusting me and hubby to our new roles he hasn’t worked since June. My hubby is an amazing man and I am hoping to motivate him to do more as he’s not as confident as previous small steps memories suppose I am also grieving for the plans we had I am in my 50s so feel young to be thinking about losing him x 

i love the idea so taking 5 minutes to look at what I have done in the day and how I helped because quite often I am looking at what I need to get done 

I am sorry that cancer took Margaret from you xx 

i am going to hate cancer but not let it take my love this statement has made be step back and look at what I have 

your post has really helped me 

hugs sunsarah 

Hi again Sunsarah,

Warning - this is a long post as these forums don't make it easy to post direct links to posts older than 12 months. I've had to copy and paste the text.

These are copies of a couple of older posts I did that really helped us enormously. They may not all be applicable, but the checklist one, however onerous, is critical that you both do this now, not later.

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CHECKLIST

As follows is a post from the Carers forum I wrote a bit over  two years ago. Seven weeks after my darling passed, this list is again proving its worth as I have a list of who I need to contact to inform them of her passing (Their end of life is not the end of your journey - nearly, but not quite).

There were four additional things we did that aren't on this list;

• Power of Attorney (control of legal and financial matters)
• Power of Enduring Guardianship (control of health and lifestyle matters)
• Advance Health Care Directive (her personal end of life choices)
• Will and Testament

These were omitted from the list as the terminology will vary and they may not be applicable in all countries.

Although it can seem cruel or heartless, the best thing to do is to get everything, and I mean EVERYTHING changed over or written down before your loved one passes.

My wife and I did this very early on and it has been a gosend for several reasons;

1. I now have a far better picture of our overall financial postition (my wife was the accountant and the brains in our outfit)
2. I've built a calendar of who has to be paid and when (eliminates surprises and help you plan better)
3. It's helped me prepare for when the worst comes to the worst.

We simply sat down and discussed how illprepared I would be if she dropped off the perch tomorrow - and I would have been.

We listed;

• all her bank accounts (BSB, account number, login ID and password)
• all her credit cards (login ID, PIN, password and which bank/account it was linked to)
• all house/contents/life insurance policies (insurer, policy number, login ID/password)
• all superannuation accounts (insurer, account number, login ID/password, attached life insurance)
• all car registration details (comprehensive insurer, comprehensive policy number, CTP policy number)
• all utility (gas/water/electricity) details (provider, account number, online ID/password, bank account for regular withdrawals)
• all email accounts (username and password, email server details)
• all onlline accounts (URL, username and password)

With all insurances and superannuation, we made certain I was named as her beneficiary.

All of her email accounts are now set up on one of my systems, so we don't miss emails any more.

We've had a secondary card issued in my name for most of her credit cards (very handy to be able to prove that"you" are "you".

Of course, doing all this meant I finally got to see all her credit card balances which, after seeing the bank balances, made a lot of sense (none of which was of the common variety). ;-) 

She says, in her defense, that they were all lovely shoes.

I said, in defense of logic, that you have not changed your name to Millicent, let alone Millipede.

Prepare - and do it as a task for both of you. Make the OH think, remember and be part of the "game". Keep them involved in their own lives.

If we hadn't done this, our lives would have resembled the insides of a zoo keepers bucket. 

Prepare. and then double check that you have gotten all the information you need and it is recorded clearly and someone other than you knows where this information is. We co-opted our eldest son on this, who was also named as a substitute Power of Attorney and Enduring Guardian.

_______________________________________________________________________________________________

IF HE GOES ON AN IMMUNO-SUPPRESANT DRUG

AKA IF YOU JUST WANT SOME PEACE AND QUIET)

As my wife is on an immuno suppressant drug, I was concerned about visitors bringing their bugs when they come visiting. Consequently, I've put a sign on our front door;

************************************

If you have
or think you have
any form of

INFECTION
COUGH
COLD
or
OPEN CUT

please DO NOT enter.
Call me on XXXX-XXX-XXX.

**************************************

This not only keeps the lurgies away from Marg, it keeps them away from me, which leaves me free to care for her.

This has worked very well so far and our in-home nursing service (Silver Chain) think it's a great idea and are using it in other homes now.

_______________________________________________________________________________________________

DIFFERENT WAYS YOUR LIVES WILL CHANGE

Welcome to the club that no-one ever wanted to join.

I can certainly relate to your circumstances. My wife was diagnosed in May 2012 with kidney cancer and, after its removal, we had 18 month of relative normalcy until it reared its head again with metastases to the spine. Since then, there have been 2 further outbreaks (paratracheal nodes and three new small tumors in her upper spine). Her cancer, like your wifes, is treatable but incurable, although the gap between the two is narrowing.

I can offer little concrete advice on understanding your feelings as each and every instance of cancer is unique, and everyones (patients and carers) journey down this horrible road is equally unique.

From my perspective, I can offer the following;

• It's OK to get angry, but get angry at cancer - not at the person that has it. 
  Cancer is an insidious bastard that has a habit of getting in between two people that love each other.
  
  
• Your relationship (both physical and emotional) with your wife will change. 
  Learn to adapt.
  
  
• Your relationship with yourself will change. 
  Make time for yourself.
  
  
• Your relationship with the world will change. 
  Stay in touch with people. It may become hard to do without compromising your time with your wife, but it is bloody important. 
  
  
• Learn about cancer, its treatment and how to best care for your wife. 
  The unknown is the greatest incubator of fear - don't be afraid to ask questions. Don't let doctors drown you in technical terms - ask, ask and ask again until you and your wife understand what you're being told. 
  
  
• Become meticulous. 
  I don't know how organized you are now, but I know how organized you will need to be. Managing specialists appointments, GP appointments, nursing appointments, treatments appointments, prescriptions, medicines, etc. will become central to your lives. A calendar app linked to all your devices will become your constant companion.
  
  
• Be prepared to step outside your comfort zone. 
  You may end up the lord of the laundry, the king of the kitchen or (but most likely and) the surgeon-general of the supermarket. You may need to absorb some of your wifes roles but always try and be aware of not diminishing or dismissing her in the process.
  
  
• Be prepared to be lonely. 
  Learn to like silence and your own company.
  
  
• Take pride in how cancer has changed you. 
  The only positive I've ever found in cancer is that it forced me to become better.
  
  
• Be hopeful. 
  Never give up on your wife.
  
  
• Be realistic. 
  Never give up until it's the right thing to do.
  
  
• Look forward to tomorrow. 
  No matter what happens, the sun will rise tomorrow. 
  As will you.

I hope this is of some assistance to you and that you and your wifes journey is as enriching and as comfortable as it could possibly be.

Hang in there buddy.

_______________________________________________________________________________________________

MOOD SWINGS (AND OTHER CHEMO ROUNDABOUTS)

Hello Kitty,

Just wait till I tell my granddaughter I've been talking to Hello Kitty - she'll be thrilled. LOL

I feel for you sweetie as I've been in a similar place to what you've described.

I tried to shelter my wife from how I was feeling as I thought she had enough on her plate without me bitching about my woes. I was doing everything - cooking, cleaning, laundry, shopping, all the financials, driving her to all her appointments, co-ordinating her meds, liaising with God knows how many doctors, nurses, clinicians, janitors, etc. and doing it all on about 3-4 hours sleep a night for pushing on 7 years.

Eventually it caught up with me and I had to accept a simple truth that applies to all carers;

If you don't look after yourself (physically, mentally and emotionally), you will end up in no fit state to look after anyone else.

I imagine that most on here have done the same and for the same reasons - protect the patient at all costs. My mum calls it being dumb for all the right reasons.

Talk to your other half.

If you're like most couples, pre-cancer, you didn't hide things from each other (mostly - some things are best left going through to the keeper ;-) ). You supported each other and made a life together.

Don't let cancer change that.

You may have the worlds best team of doctors, nurses and specialists - but the two of you are the most important people in this fight. 

Cancer is an insidious bastard that demands to be the centre of attention. Don't let it become the wall between the two of you.

The man you fell in love with is still there, but cancer insists on trying to put a layer of fear and uncertainty over everything it touches. There will undoubtedly be times that all you see is the aggression and the only thing you feel is the isolation. This is not your husband, this is the cancer making him do this.

Get angry, but get angry at cancer.

The man you love is still in there.

Talk to him.

_______________________________________________________________________________________________

CARERS GUILT (WE ALL HAVE IT, HAD IT OR ARE HEADING FOR IT)

Hi Needing Friends,

Don't feel guilty. Their cancer is not your fault.

As a carer, you have enough on your plate without wondering what a side dish of cancer would taste like.

Carers who are cancer free can never know what it feels like. All we can do is what we are already doing - caring, loving, comforting and consoling (and, internally, screaming, ranting, raving, trembling and crying).

Whatever is best for those we love.

I can only ask that you concentrate on the things that you can do and that you take care of yourself as well.

I'll leave you with the words of Mother Theresa;

Yesterday is gone.
Tomorrow has not yet arrived.
All we have is today.
Let's begin.

_______________________________________________________________________________________________

KNOWING YOUR OWN WORTH OUTSIDE OF CANCER

Hey needing friends,

Now they are grown and I wonder what the point of me will be if I lose him. 

Just this one line resonated so intensely with me and made me so sad for you.

About a year ago, I was feeling deeply depressed. My wifes cancer was progressing and we were advised that our range of future options was contracting rapidly. My greatest fear, other than my wife dying, was of my future. If I have given so much of myself to this fight, how much of "me" was there going to be left at the end?

How will I handle the loneliness, the finances, the everything? Will anyone notice me after Marg has passed? Was my worth only defined by my wifes cancer? Who will there be if I need care? Who will there be if I need comfort?

For several weeks, I was in what can only be termed a funk. Moody, miserable, irritable and not a bunch of fun to be around. It was bad and getting worse.

What turned it around was a simple call from my youngest grandson. Normally, we have one of the 4 grandkids have a sleepover every Friday night. One Thursday night, I got a call from Darcy who asked if I could have a sleepover at his place on Friday instead of him coming to our place. I reminded him that I had to stay at home to look after Nanny and Darcy said that his dad (my eldest son) was going to stay with Nanny, and he thought I needed a real rest and could sleep in his bed and keep him warm. He and the other 3 kidlets had been getting worried about me and had it all organized

I doubt I have ever felt so loved and so needed in my life.

Someone noticed and someone cared.

That simple act of loving kindness was all I needed to realize that I truly had a value that extended beyond cancer and doctors and medication and appointments and the rest of the shite that goes with this horrible disease.

Allowing cancer to depress you is like arguing with an idiot. It'll drag you down to it's level and then beat you with experience.

Don't let it beat both of you.

Find some joy in your life.

Please.

_______________________________________________________________________________________________

Make the most of your time together and take some time for yourself.

Every day, as a cancer carer, is a chance to amaze yourself with what you can actually get through. Remember those moment not as when you were wading chest deep through shite, but as yet another time shite couldn't keep you down.

I hope these are of some help or solace to you.

The sun will rise tomorrow.
As will you.

Peace,
Ewen :-)

Hello there and welcome to a group we don't want to be in. Panics' advice is sound and there is so much to adjust to and so much to be angry and sad about.

I found friends quite difficult unless they had some experience - I had to rethink what I asked or expected from people and learned to adjust around them. I found particular difficulty with people who ask relentless questions to things you don't know, want updates and information you don't have,  offer advice based on what their neighbours mother in law had........

The biggest thing for me was learning to step back and give my partner space to come to terms with his own relationship to dying. Some days I needed to be in third place.  Other days we made time to be together and cancer faded away for a little while. 

The new thing is adjusting and redefining what is a good day or what is an achievement. Today, my partner has managed to wash and dress and sit in his electric wheelchair to cook a kipper. It stank. His journey is painful emotionally and physically, and the losses around are huge, not least independence, dignity and the ability to do things for himself. 

So learning to adjust together and leave enough space for your own upset - its lonely, frightening & overwhelming. 

I am just grateful that he is mentally and cognitively intact.  We have had a ball of a year, got married and he spent his life insurance on his children. We have had time to be together and talk about how we say goodbye to each other. 

On a practical note,  we put a lot of energy and effort into getting to know what services were around and how they linked up with each other.  We both worked in the health service, so know how un-joined up and messy things can be. 

Now, we are at the stage of end of life with all the hospice and community staff being known to us. All the important paperwork is done (see Panics list above). Services and plans are in place. This is making it so much easier, but required him to be proactive and request being referred to the end of life and palliative care people early to make the relationships. The hospice at home service has been fantastic and have a big focus on enabling quality of life and living, not just a place to die. 

Sending warm wishes

Thankyou for your reply x taking sometime for me and time away from work to recharge my batteries 

we are in contact with hospice made a referral on diagnosis hubby has just looked at a group and emailed so hope this will give him a space of his own 

I find it hard because everyone is in denial or expecting all the answers from me and I am trying to come to terms with my own feelings and emotions whilst making sure everyone else is ok 

sunsarah xx