Our Journey without chemo

[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

[Guest]

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

[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

[Proud Wife]

Thinking of you both and wishing you well xxx

[Dandygal76]

I hope you are okay Marmalade, you know where we are if you need us. x

[Guest]

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

[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.

Catherine

[Guest]

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

[Guest]

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

[Guest]

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

[sandraW]

Marmalade, thank you for the update, you make me smile and cry at the same time, we were the same with the weight loss, even though Trevor's was not too bad really but it bothered him so much, so I know how you are feeling. Please do put a piicture of your teddy when "she" is finished she sounds lovely, I have just started crocheting have made blankets for the new baby, but really fancy amigurumi and have some lovely patterns for teddies bunnies and even a unicorn.

Its so good to hear Louis is feeling more comfortable, that's all we can hope for isn't it really.

You made me smile with the crossword, Trevor was far from proper clever! but he had the amazing ability of being able to come up with the last answer that you just couldn't get, even used to do it to a friend who was a crossword fiend it used to drive him to distraction.

I hope things continue to stay steady for you both, you are in my thoughts, love sandrax xx

[Dandygal76]

Hey both, the weight loss thing is horrid isn't it. It is a big cancer label as well.. I never noticed it in people before but all those that have dealt with cancer see it a mile off and from now on so will I.

What a lovely business to make and mend teddies... beats auditing hands down! I would also love to see the end result and I have ordered that book (I can't help myself!). Always good to read something different but I will blame you if it is pants... hahaha!

I hope you are both sleeping peacefully... I think psychologically I am fretting over the scan this week so no sleep for me at the moment and up for work in 5 hours! x

[Guest]

Morning ladies,

Sandra, have you thought of making a teddy for the new baby using some item of clothing that means something to you as the paws and pads? We do classes and help people to make bears that contain some special meaning. Just before Louis became so ill I helped a great grandmother make two bears (one boy one girl) for new babies using her husbands old gardening jacket and a floral wrap of hers. They knew that hey would probably not be around when the children grow up so wanted to pass something of themselves on with what is a friend for life. The boy bear had a waistcoat and cap and the girl had floral paws and pads and wore a beautiful 2 ply cardigan knitted by Gt Grandma. I am probably not local but I can certainly advise you on fabrics, joints and eyes how to do them and send you a pattern, not sure how to give you my email but happy to do so. We call them memory bears and when people hand stitch them with us they chat, drink tea and eat hob nobs, teddy hears everything of course and takes those memories with him/her to the new baby!

Dandygirl, on your own head be it! Ha ha ha. I am so glad we don't have the stress of scans anymore, I think the worrying and waiting for results is awful and really need not take as long as they do (don't get me started on that). I hope with all my heart that it goes well and that the news when it comes is good. I won't tell you not to worry as it is inevitable but remember you are doing a great job and no one could do better.

I have decided that writing these posts is actually therapy. What I write may update you all and yes, I do want to know and do care about you and yours, I really do but my posts are really a release for me, a sort of record of the trip, a cry for help or the sharing of a small joy depending on the day. I'm ok with that, hope everyone else is…

Much love to all the brave warriors out there and hope you have a good day M xx

[Proud Wife]

Good morning to you M

That's exactly what this forum is all about! We all put it or take out whatever we need and it's whatever helps you get through this nightmare that matters. I find your posts poignant but comforting at the same time. I was going to say "entertaining" but that's not right and I'm not sure "comforting" is either - there's just something about the way you write that makes me feel as though I'm in the room with you. Perhaps it's because we share similarities in terms of our husbands and journeys I just don't know but the first thing I do each morning is come on here to see how you and Louis are holding up.

Brave warriors. Love it. Smack bang on the nose. That's what we all are.

With regard to email addresses, if you want to make contact with someone on here off the public forum, all you need do is email support and ask them to pass on your details to whoever. With regard to teddy bears, what a fabulous idea. My son and I have in the past 2 weeks, 1 day and 5 and a half hours since our world was shattered, been out buying various different tatty teddies and when he sees me so sad at night, he gives me the "It's at night time I miss you the most" for a cuddle. Strangely enough it does help. I'd never be able to make one myself but could I commission you to make one or two for us? This element would be strictly business of course. My mind is already in overtime as to what we could use to make that teddy the most "lifelike" huggable bear possible.

On that note, I will love you and leave you, wishing you both a peaceful and tranquil day. May Louis be comfortable and you both have some good quality time together.

Much love

From one PW to another xxxx

[Proud Wife]

Stupid me, the one thing I came on to post and totally forgot.

M, you say how the posts help, well I have printed off every page of hubby's story and have made a book out of it because as I struggle to understand how he could have died, I read through and remember the journey.

So , keep writing, one day you will have a smile on your face recalling the crosswords, the walks in the garden and the one spoon of cheese sauce that made you so happy to see Louis eat xxx

[Dandygal76]

Hey Marmalade... it would be good hear how you two are going when you get a chance. Thinking of you. x

[sandraW]

Marmalade,

Thanks that sounds really lovely, thank you, I was going to do something similar by crocheting small animals and using some special fabric bits for paws inside ears ect. Would love to make a Teddy but just not at at the moment I am snowed down with requests for blankets, baby jackets, but would love to give it a go with your help perhaps when the weather worsens if that would be okay. Wish I was close enough to come to a class they sound lovely, especially the chat and the hobnobs.

However the forum helps is good I found for me it was just knowing that there were people who understood exactly how I felt, and were happy for me to explain my feeling and also to explain theirs too. Hoping louis is still steady and you too love sandrax xx

[Guest]

Hello all,

I have no idea what I do all day but I seem to have less and less time for anything. I told Louis yesterday that all this loafing about watching TV with him was making me fat and lazy. He said he didn't care and I could diet later if I liked.

He has been doing well this week, eating a bit better and spending more time out of bed. It may be due to his increased morphine and having less pain or maybe his heart rate is a little better, whatever it is it is welcome!

[Dandygal76]

That is great Marmalade, I am pleased you are getting some good quality time with Louis, even if it is in front of the TV. Hopefully the weather will warm up and you will get to sit in the garden soon. I hope you are doing okay yourself and I agree with Louis... you can diet another time.

[Linda G]

Hi Marmalade, good to read that Louis is doing better. Its so good to see your loved one eat and enjoy it isn't it? You never realise until it happens how meaningful the smallest achievements are. If Louis feels better then so will you - that's just how it is. And he's right (they usually are) diets can wait. Whats important is enjoying your time together. Take care of yourself as well as Louis.

xxx

Linda G

[Dandygal76]

How is your weekend Marmalade? I hope the sun is shining there like it is here this morning and that you have a peaceful nice weekend together. x

[Guest]

Hello ladies,

It's always such a treat to hear from you. Goodness knows you have enough on your plates to think about.

Louis has not been so good these last few days. He is eating about 450 calories a day which is much better than 10 days ago but his pain is on the increase again. It is just over a week since we increased his Zomorph and at this rate we will be increasing it again in a few days as we are topping up with oral morphine. It doesn't seem to make him sleepy and doesn't seem to bung him up but that may be the home made vegetable soup which is his latest food of choice! He gets lots of wind but that seems to happen whether he eats or not. He is also getting lots of phlegm but at the moment we are not medicating that as he can spit it out and we don't want to dry his mouth up. The thing that always help to some degree is a hot water bottle wrapped in a towel. It is comforting and sometimes helps to move the wind. Although he is very alert in the daytime he does sleep at night (mostly) and takes 2 or 3 hours to clear his head in the mornings. We are guessing that this is the effect of the liver being compromised as that causes fuzzy head and he has a yellow tinge. He and the GP did a TEP non intervention form weeks ago and he is still not for stents, feeding or IV antibiotics except to relieve distress. My doctor daughter has been this weekend and we both agree that for someone who hardly eats, was too decrepit and had too many chronic health issues for chemo, he is doing remarkably well. He does get very worried about the night time as he has had a couple of his heart stop issues at night and he fears them. The new monitor means that if I even hear him wriggling about I can be there immediately. We have a comfy sofa so sometimes, like last night I just flop on that and doze with him.

There has been a lot of laughter this weekend. Louis had a big windy session last evening and Suzie, our daughter and I took no notice until a particular breaking of wind after which there was a silence and then "do you know Dad, that sounded just like the Marseillaise" I don't know why really but it had us all in stitches. Laughter is really the best medicine.

As the doc was in residence I got to spend a couple of hours shopping and mooching round the garden centre. Joy. I bought some plants for a pot outside the front door where the previous ones have gone a bit leggy (violas and lavender) and lost their appeal. I've lopped them with some shears and they will come back in time for a good show in September I hope.

Teddy is coming along, head, two arms, one leg and the body done. Popped to the shop this morning and picked up the cotton stuffing for his nose, paws and feet. The rest will be some gorgeously soft polyester so he can be washed.

We have the weekend prize crossword to complete later if the little grey cells hold out and my sister says I have to watch a TV thing about an Australian doctor/detective as I will like it…how she knows this I don't know but we can give it a whirl.

It has been sunny here today, we have laughed and we can keep Louis comfortable, that means we are content. Much love and prayers for a peaceful night M xx

Edited December 9, 2016 by Anonymous

[Dandygal76]

Hey Marmalade, long time since you posted. I have been busy with tennis lessons and helping at Cubs tonight and just thought I would sneaky peek on here. I hope you and Louis are okay. It was quite warm here today so I hope you perhaps got out in the garden to do your crosswords. x

[Dandygal76]

Hey Marmalade. I finished my post a little early before because my mum called. How is Louis' pain? It is bitter sweet isn't it that we can all laugh at such belchy windy things we would never have even discussed before PC.

I dabble in a bit of the garden as well and had bought loads of plants and veg and had saplings going into March and then all this crap happened and I ruined them all. Henry loves to grow his own pumpkin and I am afraid PC took that simple thing from us as well (for a while). If it had happened even two months before I would have planted that pumpkin and really appreciated the value of such a simple thing to grow and to do for my youngster now.

It must have also been nice to have a break with your daughter there. I cannot comprehend the hardship of you and my mum who live this absolutely 24/7... There are some rare moments now, even tonight playing a water fight at cubs, where it does not enter my head for 20 mins or so and then it does (I think also because dad is in a reasonable place right now) - you guys get no such small relief I am sure. My mum said to me it worse dealing with this when it is your parent but it isn't. My parents brought me up to strive and be independent. My mum has only known walking in and being with my dad and living 24/7 with him for the last 45 years. My life does not revolve around my parents (well that has changed a bit now and it does more so). I am used to my life with them part of it but not all of it. I feel so much for you, PW and Judith.

I hope you and Louis are having some quality time together and much love to you both. x

[sandraW]

hi Marmalade, I too am just wondering if all is going okay for you both too, hope Teddy is nearly finished now and that you did well with the crossword and that your world is still stable....

As for the wind Trevor always blamed the Creon, I remember when we shopping one day and the supermarket was remarkably empty Trevor was bending to get something out of the freezer compartment when he let off the biggest loudest raspberry ever heard, unbeknown to him there was a lady right behind him, bless her she just laughed her head off, but Trevor was so embarrassed, and I just pretended I didn't know him!

thinking of you sandrax xx

Dandygal you really are a very sensitive lovely young lady xx