Just Feeling Lost

vixdname

Hi all,

My Dad got diagnosed with Eosaphageal cancer in March of this year.
According to the scans and endoscopies etc they reckon they had caught it early.
He went through the discomfort of having a peg feeding tube put into his stomach for calorie in take before the treatment started and to help keep his weight up as they were going to perform surgery on him a month after his treatment stopped.

He had 5 weeks of radiotherapy from Monday to Friday and weekly chemo every Wednesday also for 5 weeks.

He breezed through the chemo not losing any hair but just slightly nauseous for a day or two but nothing bad.

The 2nd last 2 radiotherapy treatments hit him hard and he was in quite a bit of pain with them.

On the 22nd of July he was not himself all day and we called an ambulance for him.
They checked all of his vitals with the only anomaly being his blood pressure being slightly low and they put this just down to dehydration as he admittedly hadnt been drinking much water the previous few days.

I got him 2 litres of water and he was going to drink them over the space of the day and he did.

At approx 5pm after I came back from briefly leaving the house and I went up to him and I sat next to him and we spoke for about 10 mins, about the kids and other usual things.

He then said to me that he was really hot so I told him Id open the 2 windows which I did I then went and got a thermometer and as I went to take his temperature I noticed he was staring into space.

I held his face and tried to get a verbal response off him but he didnt look like he could even see me, I waved my hands in front of him but no response, at this point I shouted for my sister to call an ambulance.

I asked him to not go there and then a number of times and after about 2 mins he came around slightly and was able to answer questions but all the while he was still agitated and not fully awake.

The ambulance arrived as did an advanced paramedic crew and as time went on, Dad slowly slipped back into unconsciousness and began staring up to the ceiling again.

The ambulance guy told me that my Dad was breathing via his stomach muscles and that this was a bad sign and he would only be able to do that for a short time before it go too much and breathing would stop.
He then told me to chat to my mother who was downstairs about if we wanted , if possible to resusitate Dad.

I had that horrible chat with my mam and sister and we all agreed that unless Dad could come back 100% he would not want to come back himself and Dad had always stated this.

I went and told the paramedic what was the decison and he agreed.

A Dr then arrived on scene and she told us again about making that hard decision and told us that the paramedics most likely would not be about to bring him around and even if thy could he would require 24 hour care and have no quality of life as he had up to now enjoyed.

According to drs they reckon he passed from a Pulmonary Embolism as a result of either the disease itself or the treatment.

My heart is simply broken as he was not just my dad, he was my best friend.
I'm reliving what happened over and over again in my head like my brain is trying to make sense of it all but it just doesnt make sense.

Im ok one minute then it hits me like a sledgehammer that "MY DAD" is dead and gone forever.

I love him and miss him so much and just dont know what I can do to stop hurting this much.

Im in bad form with my wife and kids who I know dont deserve being given out to but I'm living in a nightmare that theres no escape from.

Having spoken to a number of people who had loved ones suffer from that same cancer and the horror stories some of them have told me of the passing of their loved ones I know deep down my dad had a lucky escape as this type of cancer can inflict horrific deaths on it victims.

I'm sorry for the long post and I hope I didnt give too much detail but I just need to get this experience off my chest.

We had so many high hopes but all to be dashed by this unforeseen blood clot which ended the life of my beautiful dad and best friend.

I feel robbed and angry and empty.

MintyMagnum

Ye made a very difficult decision. It was very brave, loving and unselfish. In time hopefully you will be comforted by your fond memories of better days. My condolences on your loss.

Ghekko

That decision is so hard. We were asked to discuss dnr with our mum when she took ill but things also took a turn for the worse and she was taken quickly. Having just seen my mil die an awful death from cancer, I was 'glad' my mum was spared much suffering. My dad went to a nusing home and a dnr was organised when he went in. He too had a relatively peaceful death recently. It's some consolation that they didn't suffer too much but of course it's hard to believe they are gone. What you should do when you feel up to it, is write the story from diagnosis to death. Do it in stages as it will be upsetting, but it may help to get it all down on paper - write, don't type and don't worry about mistakes. When you have finished take it out every so often and read it again. It will supposedly help to process the reality of what has happened. It's your version of what's happened and how it made you feel. You don't have to show it to anyone else. Funnily enough my memory is so vague - possibly a coping mechanism - that I don't think I could do it yet. Dh did it on recommendation from a counsellor. My way of coping is to change my thought process when I do start to think of them. I realise it won't work forever though.

Lucuma

Vixdname I'm very sorry for your loss. 
You were either lucky or unlucky to be the one that was with your Dad when this happened to him. It's probably too early for you to be able to decide which one. Apparently one day we'll be glad we were with our loved ones when they passed (also my Dad in my case) but even in Year 2 of grief now I'm still not 100% at the place where I feel ''lucky'' I was there. 
The word ''lucky'' just seems like the wrong word to describe how I feel about witnessing what was probably one of the most traumatic things I've ever seen - namely the person who I loved maybe the most in this world passing away in front of me. I can't get to a place where I feel I was ''lucky'' to experience that. 
But I suppose I have enough time and distance now to at least be able to see from a logical point of view that if I had missed it it would torment me e.g. if I lived abroad and didn't make it back on time etc. It's probably one of these catch 22 things in life. If you missed it, it would torment you. But seeing it torments you too. You can't win! 
 I think the way your Dad went - having a normal everyday conversation about his grandkids with his son that he was very close to is just about as good a way as any to spend your final moments. It contained many important elements of who he was - a father, a grandfather. 

Re the circling awful thoughts: Been there. They do eventually fade. Just feel them. If you can find anyone (even an online support group for esophagal cancer maybe if you've no-one in real life) who will go to that dark place with you and let you talk about it, then take that opportunity. Those circling awful memories are a necessary part of the process. You've been through an awful trauma and your mind is trying to process it. No way around them only through them. I found the car driving to and from work a good one for letting it all out. Assuming you don't have anyone else in the car with you (!!) - Roar, Shout. No-one can hear you. Let the anger out. 
It feels weird the first time but it's healthier than carrying the anger around.

doireann08

I am so sorry for your loss.

You had such a difficult decision to make and I do think you made the right one.

My Dad passed away a month ago so I can relate to feeling disbelief, shock and feeling lost.

My Dad was diagnosed with cancer the same time as your Dad, we think that we will be prepared when they go as we have had time to process their diagnosis. But the loss of his physical presence hits hard.

What has helped me is that I still talk to my Dad, I am also going to a bereavement counsellor today. My thoughts are with you.

9or10

Sorry for your loss Vixdname.

Losing Dad's is tough.

Six years on I've no great nuggets of help, but I feel your pain.

I found:

- Time helps - not to heal but at least to scab over.
- Keeping busy helps - just something to lose your mind into for however short a time.
- Your family will help if you let them - keep em close.

I wish you all the very best.

JillyQ

Hi op

So sorry for your loss. I know what it is like to have to make the decision about resussation. I had to make the decision to keep my father alive until we were able to get my mother home from hospital in Dublin. Like you my father was my best friend. The only thing I will say is it does get easier to cope with. I'm 16 months down the line now and still get teary at times but not as often.

LegacyUser

OP, I could've written this post myself, albeit the cancer my father had was multiple myeloma. I too made the DNR decision along with my mother who barely knew what we were agreeing to it was all such a shock. It basically played out identically to what you went through. Reading through your post has left me numb as it reminds me exactly of what I felt then, and still do feel at times. I am about to reach the 10th anniversary of the death of my father, my best friend in the world, a man we thought would live forever such was his peacefulness and positive outlook.

Two nights ago, I had a dream that I was back there the night we lost him, and he was desperately wanting me to help him. Then he was staring at me glassy eyed and drifting away, exactly as you experienced. It was like I was reliving that night all over again, crystal clear. I felt the dream was almost placing doubt in me regarding our DNR decision. My father was only in his 50s, you wonder if maybe he would've been the exception and made a full recovery had he been resuscitated. But deep down I know better. You would think I'd be over it by now, but the upcoming anniversary seems to have made it fresher than ever, probably because other family members are mentioning him too.

All I can tell you is that with time, it does get easier. You stop thinking about them every single hour, and when you do think about them, it eventually becomes happy fun memories. You can recall their opinion on something in a casual way, as though they are in an adjacent room, rather than it hitting you like a ton of bricks.


On a side note, my 94 year old grandmother who had osteoporosis was unfortunately resuscitated last year, after what should've been a peaceful passing in her armchair. She survived for 14 agonising hours afterwards with every bone in her rib cage and many in her back smashed (due to the osteoporosis). She was awake in the hospital (black and blue all over), she was even able to speak to us for a couple of hours telling us she was in horrific pain, and knowing she would die at any time, she was heavily medicated and it is a memory I will never be able to forget.
Prior to the resus, she was sitting in her favourite armchair with a cup of tea surrounded by family and friends. It would've been the perfect way to pass away but instead (with people having the best of intentions) it was a horrific experience for everyone. It's good to discuss these things (DNR) when people are in good health, and know where everyone stands on such matters. I know for sure my grandmother would never have wanted to go like that.