Hi elkay,

Wow what a heart wrenching story - my heart goes out to you both and a long distance hug.

I honestly do not know what to say that would be of use to you. I lost my husband two and a half years ago, three months after diagnosis of cancer, so did not have any 'extra' time with him, he was recovering well and ready for home when he collapsed and died within twelve hours.

You have both gone through so much and know what is in store, but dealing with it is a different matter. I would be inclined to advise talking to each other as much as possible and yes crying together as I believe crying is a great stress reliever.

I am sure there are others on this forum who will be able to offer you meaningful advise so I hope they post soon. Meanwhile return here and tell us how you are feeling, quite often it helps to write your fears and concerns down. My thoughts are with you both. Rodis.

Hi elkay,

I am afraid I also don't have that experience to share for you  - other than I am also a carer (mum) to a toddler with cancer.  But I wanted to reach out in some way, to at least let you know you are in my thoughts.  Your posts have been very inspirational - managing to spend some wonderful times with your partner and seemingly to enjoy that life, even though you knew it wouldn't last.  Who knows how long your partner may still have left.  There are people who carry on for a long time - even when treatment has ended.  A lady called Tanya who once wrote on here and was declared terminal but defied the doctors for a long time.  And others.   So big hugs to you both and I hope others will be along shortly to help. Joanne x

Hi Lorraine,

That "dumping" sounds awful. I guess there is no easy way for them to say "we're giving up". But when you've lived with secret hopes behind the firm realism it's got to be a punch in the solar plexus to hear that the dark future is near.

Some things my friends have done in their own, similar, endgames:

Mike took some time to "write" (by this stage he couldn't hold a pen and could barely talk so it took a while to dictate to Polly) his own eulogy. They had decided that Polly, and their daughter Beth, would want a funeral ceremony and Mike didn't want some stranger to sum up his life. (Determined to have the last word as ever).

He also, with Polly's help, uncovered the secret that the hospice could justify giving him total sedation (making him unconscious) then switch off his breathing support. His greatest fear was a mix of being conscious when his breathing finally failed, or being conscious but totally paralysed, with supported breathing, when his heart muscles finally failed. With a great deal of sharp questioning and pushing he managed to arrange a death that he could cope with.

Geri, finally agreed to move to a bed on her ground floor. (She'd had to crawl upstairs when she could no longer walk up them). Luckily her bathroom was on the ground floor too. She was able to stay at her own home, control her own pain relief, have different groups of friends come to visit and then die in the company of her immediate family. She played Bridge with us the night before she died (pretty badly as it goes....morphine doesn't help your card playing at all!).

Reg (died last week, brain cancer) resisted and resisted going into the hospice. Refused to use a wheelchair. If he wanted fresh air in his last few hospice days they had to push his bed outside. He was a roofer by trade (tiles, lead, felt, slate whatever material), usually working at great height. His hobby/sport was mountain bike riding. The whole incapacity business was a nightmare for him. By the end his motor control was so poor that he was rolling out of bed to the floor without any intention of moving. Jean couldn't lift him back and their house was the wrong type (too small) for a hoist. So he finally had to go into the hospice.

I guess what is coming to me is that: having spent all this time planning and living the best life possible, it may be time to discuss the best death possible.

I think these could be the hardest discussions you'll ever have.

Pain relief will be an issue. Strong painkillers reduce more than sensitivity to pain.

The choices between the convenience of a hospice (for hoists, IV pain relief, easy sluicing of bedpansc etc) and the dignity  and security of home will be difficult.

The kind of line that Jean had to draw (when she'd called paramedics three times in one night to get Reg back onto the bed when he'd fallen out) is possibly better explored and agreed before rather than while it's happening. I know Jean feels she failed Reg in having to give up on his ideas of dying at home. He wasn't in a condition to tell her whether he understood, forgave her, or wanted to spare her those problems and supported her decision, by the time it was happening.

I've got no answers but I've learnt a few of the questions from the too many friends I've lost over the last few years. Where? How much control? How much pain/how much clarity? Who do I want there? How much do I want my carer to have to put up with? What kind of funeral arrangements?

As always the little beasts can creep up with new surprises to spoil whatever plans we make, and any discussion should bear that in mind, but I reckon that, when you have to accept that Death is coming down the street to knock on your door, you've got a bit of time to greet him with dignity and on your own terms. He may still crash through the window earlier and messier than you expected but when you know he's coming you can at least have clean socks on (metaphorically).

Dunno if this of any use. Really feeling for you both. Big hugs from Jan and I.

Russ

Dear Lorraine,

You hoped you would never post this discussion, but most of us who are coping with Stage 4 cancer whether as patient or carer know that it¿s coming.  I know that a similar situation is round the corner for me too.

If the Irinotecan was making Ian ill then the decision to stop it isn¿t ditching, it¿s caring, and I hope it will mean that Ian will have the chance to recover from some of the side effects for a while and have some good days with you (and the felines) in the place you love to live in.  No more waiting for a week and a half for those good days, only to have another infusion and more difficult days.

Sometimes people whose care is managed via a hospice ¿ whether as out-patients or actually staying there ¿ live longer than those who continue on more aggressive treatment.  They also tend to have better quality of life whether physically or psychologically.  There¿s an article I recommend called Letting Go by Atul Gawande, Google and you¿ll find it; the examples are all from the US but I¿m sure they¿re valid elsewhere.

I think a lot of us expect too much of medicine.  I don¿t think you do though; it seems that you and Ian expect a lot out of life ¿ you give your energy and hope - and you get a lot back.  As Newbie suggested, now is the time to plan for the inevitable so that you¿re both confident that when there are decisions to make you¿re prepared for them rather than stressed by them.

I don¿t know if this will help at all, feeling a bit (verbally) reticent.  Big hugs, though, without any of that British stiff upper lip stuff.

Expat xx

I'm cheating here - sending you guys a blanket thankyou - but I'm crying at the moment for the first time since that clinic on Monday - so you've done well, because I'd not managed to cry and get rid of some of the stress till now. 

THANK YOU, THANK YOU, THANK YOU.

Ian's getting better each day, still getting to quote him "buggered" with some exertion, just not with the least tiny exertion like last week.

You are all stars......  I'll post again soon, better and to each of you.

Hi Lorraine,

Don't feel obliged to send individual replies.  So pleased to hear that Ian is feeling less b*ggered too; that's good for both of you. It's weird when you hear 'you're looking very well' addressed to someone who has cancer; I hope it's makes him feel even better.

You said on a different thread that Ian's tumour was being tested to see if Erbitux or Vecitibix might help. My husband's side effects from that (I think you've read my posts about it) were among the most extreme the oncologists had seen; in the majority of patients it isn't that bad.

Expat xx

Just on our way to bed with a milky drink after the strangest day.  Not often you get to meet your husband's hospice nurse for the first time..

Thanks for the info on the Erbitux side effects.  That helps.  Ian's thinking he will give it a go for a while anyway and I think it will help knowing that his side effects mightn't be that extreme.  The Avastin hardly affected him until this last sixth cycle, and even then we don't know how much of that bludgeoning was because of the Irinotecan.

Thanks again.

Sorry to hear about the low count and postponed chemo.  Ian was really lucky that it never happened to him but we saw a few people sent away and you could see it threw them.  I've still got everything crossed for your return to the Motherland!!

Thank you so much - I accept your hug and hug you right back

Rodis, I'm sad for you that you didn't get any sort of remission time together.  Three months is such a short time to cope with all the emotions and then have your dreams dashed.

We met Ian's hospice nurse today - a quantum leap on the journey.  For now she will keep in touch by phone and they will watch for symptoms.  They don't, as a rule, do CT scans but she agreed the "mass" in the lymph nodes probably won't show up on x-rays so it looks like we'll be dipping into our pockets to pay for CT's as well.  Welcome to the NZ health system!  I asked if they had any idea how long Ian might be well and "they" haven't but she suggested any last hurrah-type trips should be taken pretty smartly.

I've shut the 2 1/2hr discussion out of my mind but it's bed time now and I can feel another sleepless night coming on.

There's a lot to get used to.