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Re: Our Journey without chemo

Posted: Tue Jun 21, 2016 7:58 pm
by Marmalade
I completely agree with Dandygal, as long as they want to fight then put the amour on and go into battle with and for them.

The first issue I faced was stopping myself going into battle, it's harder than people think to stand by and wait. Every time he had a symptom I wanted to 'manage' it, research it, medicate it and along the way I was driving us both mad trying to find things for him to eat and drink to keep his strength up. All that did was upset him and exhaust me so I have had to learn to take each day as it comes and roll with the tide.

For the last few days he has been having migraines so the TV has been a no no. Instead we have been listening to music. He loves opera but has a very emotional response to it at the moment so he prefers to do without. Instead we have been singing along to 'Music to watch girls by" which has some old favourite popular songs by Sinatra, Dean Martin et al. We did Irish ballads yesterday but they can be a bit maudlin after a while. Tomorrow we are going to have Meatloaf which we often played on long car journeys. We are also doing the Telegraph crossword. His sight is a bit odd so I read the clues and we reason them out together a few at a time.

Apart from the migraines which now seem to have stopped, he has definitely turned yellow. It's been happening slowly over the last 10 days and this evening he asked me what we do about it. I could only tell the truth and say 'not much, your poor old liver is struggling just like your heart and the other bits, all we can do is manage symptoms as best we can' I will let the doctor know tomorrow but at the moment he is not in persistent pain but feels light headed (low blood pressure) and very weak. He takes oral morphine for strong intermittent pain and has slow realise morphine morning and night as capsules. He can still get out of bed, get to the loo which is only for steps from the bed, walk along the landing and stand for a few moments to look out at the garden. He can sit for a while but soon wants to go back to bed where he is most comfortable. He has not needed anything for blood sugar for a week as it is consistently around 7.4mols. When I reorder his meds I will ask for liquid formats as he is now finding it harder to swallow capsules and tablets are almost impossible.

He has eaten more in the last two days, today he has eaten a whole Weetabix and milk (no sugar because he doesn't like it) and a dessert spoon of a weird old family recipe for ratatouille which contains bacon bits, green beans, raw onion and roughly mashed potatoes. It tastes better than it sounds, and was by special request but he probably won't want it again and won't eat again today or have any milky drinks. He is taking the odd half cup of tea with milk during the day and water. He just doesn't want things and we have agreed that I won't keep pestering him.

All things considered he is in fairly good spirits, just a bit down when we talked about his organs struggling and again he wishes the waiting could be over quickly. He is a super patient and tries not to make work. He worries all the time that it must be horrible for me too and tells me how grateful he is that I am there like a flash when he wakes in the night feeling ghastly. We chat and have a hot water bottle and a foot massage while we wait for food to digest and gas to move or meds to take effect. He really is a trencherman and I admire him greatly.

So, despite the forecast we have had a dry day with some sunshine, Louis is pain free, the migraines have stopped and we completed the crossword in 32 minutes flat and had a lovely sing song.

Love to you all and may you all have a peaceful night xx

Re: Our Journey without chemo

Posted: Tue Jun 21, 2016 8:52 pm
by sandraW
Marmalade you make me cry, your posts are so beautiful, you are so brave, not much option really though is there, you just have to carry on because we love them so much and just want it to be easier for them, as easy as we can make it. I just hope your beloved Louis drifts away surrounded by your love
I am here at the moment at the other end of life, the start, with a new baby, youngest son and daughter in law's and can't help but wish his granddad could have met him and wonder just what his life will hold, I just hope he finds someone to love him as much as you love Louis, sending love strength and (((hugs))) to you both sandrax xx

Re: Our Journey without chemo

Posted: Tue Jun 21, 2016 9:53 pm
by Proud Wife
Hello Marmalade

I wasn't going to post this evening as so so tired but having read today's post, i just couldn't go silently away. We already share so many similarities but I could have written that post. Identical. In the beginning I did exactly the same until I realised it was stressing hubby. I found him in tears a week or so before he went into hospital for the final time, he was listening to Andrea Bocelli Con Te Partiro (time to say goodbye). This was only the 3rd time he'd cried since diagnosis 14 months previously. I don't know if it was the chemicals released by the tumour or realisation that made him do so but I see that opera can make Louis very emotional. Inability to swallow pills, again identical but what got me the most was Louis worrying about you. Hubby did exactly the same, I too was at his beck and call when he needed something - how can you explain that our own aches and pains or whatever are NOTHING in comparison to what they have been going through? You will take a lot of comfort afterwards in knowing that you did your absolute utmost for Louis, having regrets or wishing you did something differently is going to hurt you - there's no need. You are being the most wonderful wife, best friend, carer to Louis and he knows it. That's just priceless. I've said it before and I will say it again, this is such an amazing place to be on, with the most amazing people. It's special because we all wish nothing but a peaceful passing for our loved ones even though we don't want them to go and we don't want others to have to go through the pain of loss. I'm so sad that Louis wants the waiting to be over but I can totally and utterly understand why. May you both have a peaceful night. Thinking of you my friend xx

Re: Our Journey without chemo

Posted: Wed Jun 22, 2016 7:26 am
by boa
Good morning Marmalade, I hope you and Louis had a peaceful night. Thinking of you both. Catherine

Re: Our Journey without chemo

Posted: Wed Jun 22, 2016 9:21 am
by Marmalade
Sandra, Catherine and PW, thank you, it is ridiculous but the comments left all add up to lift the spirits.

Sandra, how lovely to have a new baby in the family and to know that the baby carries some of your husbands genes. Life really does go on and I know you will see him in the little mannerisms of your children and grandchildren and know that he did not go without leaving you a small part of him x

PW, you must be exhausted, all the activity is your way of coping short term I know and I am grieving with you xx

Catherine, always such compassionate messages, so much appreciated x

Re: Our Journey without chemo

Posted: Wed Jun 22, 2016 6:48 pm
by Proud Wife
How's Louis today Marmalade? Thinking of you constantly, knowing now what you are going through and what you had ahead of you. Makes it even sadder if that makes sense? xxx

Re: Our Journey without chemo

Posted: Wed Jun 22, 2016 10:08 pm
by Marmalade
Hi PW,

My man has had a fair day. He slept like a baby all night but sadly I didn't, I thought the monitor was malfunctioning and kept getting up to check he was breathing! Ridiculous but such is life. He had a shower and a Weetabix (it is the only food he has most days) and we did a bit of crossword and watched the rain.

Around midday he had some quite bad pain which seems to be from wind mostly so we walk around a bit and cuddle warm hot water bottles but today it was a bit more so some oral morphine helped. By teatime he was back on an even keel and I read to him, we are reading Tales of Old Wiltshire, short little anecdotes about eccentric country folk. He is quite chipper this evening, he had half a cup of Horlicks and we have been watching a detective thing on the TV. Neither of us is up to EU debates!

His GP rang this afternoon to see how he was and we had a run through - she seems to think I am managing his various medications very well which is reassuring and agrees that he should have his own bed if I can manage getting him down and his feet up when he has heart episodes. He is so light weight now and I am a sturdy girl so it's not really a problem. She thinks that a drop of oral morphine last thing is a good idea if it helps him to settle and thinks he is still on reasonably low doses.

Tomorrow the hospice specialist nurse will come to see him, the people are coming to collect the hospital bed (which will give us more space) and, the new, brightly coloured fitted sheets for his non standard 3'6" bed will arrive. Louis thinks I am addicted to buying bedding and he may be right. I do like quality bedding and as it takes longer to dry, I obviously need more of it ha ha.

So, the sun came out this afternoon and Mr pheasant has been in our garden showing off his gorgeous plumage and shouting attract a new mate. We are blessed. Good night all, have a peaceful one M x

Re: Our Journey without chemo

Posted: Fri Jun 24, 2016 4:21 pm
by Dandygal76
Hey Marmalade, Did the hospice nurse come out yesterday? How did it go and is Louis pain still on an even keel? I agree, EU debates are not up on the on list of priorities at the moment - not sure it will make much difference to the NHS as a whole and certainly won't find us that cure!

I looked up 'Tales of Old Wiltshire' on Amazon because I love crossing genres and following a completely new book lead. I never stick to one type of book, fiction or non fiction. There are no reviews though so not sure how popular it is!

It was really nice and warm here this morning so I hope you got to go out in the garden. I hope you are okay. Update us when you can. x

Re: Our Journey without chemo

Posted: Fri Jun 24, 2016 6:35 pm
by Proud Wife
Thinking of you both and wishing you well xxx

Re: Our Journey without chemo

Posted: Sat Jun 25, 2016 10:14 am
by Dandygal76
I hope you are okay Marmalade, you know where we are if you need us. x

Re: Our Journey without chemo

Posted: Sat Jun 25, 2016 7:22 pm
by Marmalade
Oh how lovely to hear from you both! Such a treat.

We have had a rough couple of days with pain escalating and him starting to turn yellow but we seem to have got on top of the pain now thank goodness. Louis is weakening a bit each day and shrinking before my eyes. He likes me to be with him more, not always chatting, just being there. The specialist nurse is a good woman, Louis likes her, and she is very reassuring but is a specialist palliative nurse not a specialist in pancreatic cancer nursing. She is also fairly new to this but was previously a district nurse. Sometimes she suggests things that don't really work with PC but the GP and the doctor daughter are both very switched on. I have to say our GP is incredible, up to date and definitely working with us. She phoned me on Friday night at 9.30pm just to check we were ok for the weekend then gave me her mobile so I could ring her if I was worried at all over the weekend.

Tales of Old Wiltshire is just what my friend Frank calls a 'bog book' a thin volume, something to pick up and put down in short bursts. Not particularly well written but more interesting and better researched than most. It is

Did I say that I have a business that hand makes and sells and repairs teddy bears? Well I do, although my partner is having to do all the work at the moment. Anyway, after having cut the grass this morning for some exercise I have been making a new pattern and cutting out a bear, maybe I can attach a picture of it when it is done. Louis loves me to sit with him with my sewing. He can't chat much as it is very tiring but he says he feels better with me doing my "wifey stuff" like mending, or sewing ha ha ha.

I'm back off now to have a go at the prize crossword with Louis who has no pain today and the sun shone long enough for me to cut the grass before the deluge. Good night all of you, rest well xx

Re: Our Journey without chemo

Posted: Sun Jun 26, 2016 8:29 am
by boa
Good morning Marmalade
Louis' journey very much echoes that of my husband who turned yellow towards the end. Like Louis he just became weaker every day though he was in hospital and the the hospice. Again the nursing staff were not familiar with PC but they knew how to relieve pain which is possibly the best thing.

I don't think you have mentioned your teddy bears before. I'm a bit of an arctophile myself but I have been reducing my collection.

Your GP sounds wonderful. Though I must say our GPs are good too. I've had a bit of an issue and my GP referred me for a procedure and I got an appointment today . Didn't realise these things were done on Sundays.

Hope you and Louis have a good day.

Re: Our Journey without chemo

Posted: Sun Jun 26, 2016 3:12 pm
by Fifi
Hi Marmalade,

I think your posts and your love for Louis are just beautiful. You have the most amazing words to express your love and admiration for him. Everyone I read just makes me choke back tears, but in a good way.

I hope you have both been doing the crosswords todays, and that Louis gets more right ( men like to win don't they?)
He sounds the most loving and courageous man, and I wish him much love.

Pancreatic cancer is just the most vile heartbreaking beast there is, and absolutely no one should have this. Why cancer takes the best, I will never know.

Will be thinking of you both always.

Leila xx

Re: Our Journey without chemo

Posted: Sun Jun 26, 2016 7:32 pm
by Marmalade
Oh Leila, I am distraught because I have read some of your recent posts and I wish I could wrap you in my arms. Grief is all around us, those of us who are still caring for our loved ones are grieving for what we know will come and others for those they have lost, some days it overwhelms us. I will be thinking of you too, always xx

Re: Our Journey without chemo

Posted: Sun Jun 26, 2016 8:05 pm
by Marmalade
I am loathed to say we have had a good day as I feel it tempts fate but it seems mean not to. Woke early but grateful that I had not had the usual two hours of torturing myself in the small lonely hours of the night.

I was going to say that Louis has eaten well but you really can't say that a Weetabix, a dessert spoon of cheese sauce and a cup of Horlicks is eating well. It is however about a third more than it has been for weeks so hooray for that! He is certainly more comfortable with the higher doses of Zomorph and still seems alert most of the time. He had about 30 minutes sleep after his shower this morning but that's it really and he is doing well with the prize crossword. Yes, I do let him get the answers first, mainly because he is what my Mum would call 'properly clever'. I hate the shower because seeing the weight loss is really awful, we both see it, nod agreement but say nothing. What is there to say? I use 'My Trusty' sunflower cream on him which was developed at Salisbury Hospital for burns patients originally but now they produce it commercially for other hospitals and private use and you can buy it on line. I have everything crossed but Louis does not have any pressure marks or sores and the cream is lovely if a bit pricy.

Got washing dry, put the vac round and did a bit of weeding while Louis rested this morning and it's been the American Civil War and a good murder in Midsomer this afternoon with me hand sewing Teddy's head. Beautifully soft, lush mohair. Louis says it is a girl Teddy, he can tell by the face ha ha ha.

So, as we approach the end of another week Louis is what he describes as, 'steady'. We hope all of you and those you love have a peaceful night. God bless xx