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Re: Our Journey without chemo

Postby Marmalade » Thu Jul 07, 2016 6:26 pm

Hello ladies,

I am very pleased to report that Louis is continuing to have a good phase and is eating very well as long as it is all zapped in the blender. Today he has had a ginger biscuit with his morning tea, a weetabix, and get this, roast lamb and veg and gravy! He is saying he would like soup for supper. We can't explain it and he is still having very small amounts but it is 100% better than two weeks ago when all he was having was milk. He is not putting on weight but has almost stopped losing it and we are free of heart pounding and flutters, he has even lost his yellow tinge temporarily. He is pain free at the moment, God bless morphine, apart from that caused by wind and that seems to respond to a warm hot water bottle.

All this good news so why do I feel I should justify it to friends and neighbours who visit or enquire. I know it sounds completely mad but they are often quite shocked that he looks as good as he does, they seem to think he should be comatose. In fact he rarely sleeps in the day time and is very alert. The only things that are noticeable are the weight loss, the yellow tinge (sometimes) and the breathlessness if he is talking or walking round the upstairs. On the 11th of March we were told that in his condition and with the size and placement of the tumour he could expect 3 to 6 months without chemo. I feel like Gregory Peck in that film about a bomber pilot who keeps flying missions, the odds of not coming back get shorter, but I am not going to dwell on that here.

Sadly Louis does not have the energy for the stairs any more and although we have all offered to help or gets stair lift he says that although he likes the idea he knows he will feel exhausted and that he is much more comfortable on his bed. He does get out of bed during the day and sits in his chair or the sofa in his room or wanders round the upstairs. He makes a point of walking to the farthest bathroom when he has the energy although it is only three steps to the one off his room. It sounds like a mansion, it's not but it is a roomy 4 bed house so there are other rooms he can go to and sit in. I have put a big jig saw on a card table in one room. It's not ideal as he can't bend forward comfortably but he has sorted all the edging pieces which he can do on his lap. He can also see the garden from all directions and watches the birds. This week he is glued to the tennis and I can hear him giving the players advice through the patient monitor!

Teddy is finished and she is called Hazel. Just have to work out how to post a picture of her.

If Louis remains good I am going to go to a street fair tomorrow for half an hour and leave a neighbour on watch. It's only 5 minutes away but it is the street where we have our shop so would like to show my face. I have not been to work since the end of March.

Well ladies, today has been dry and humid but we are both feeling good, a chap who used to work for me in a big business in another life came by at tea time. His two boys were absolutely charming and chatted easily with Louis about their visit to the Tank Museum at Bovingdon. Interesting how children are so much less anxious than grown ups. We are feeling very blessed just now, long may it continue.

Love to you all and I wish you a peaceful evening M xx

Proud Wife
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Re: Our Journey without chemo

Postby Proud Wife » Thu Jul 07, 2016 8:08 pm

Hello M

I can't tell you how happy I am to read your latest post. I have been coming on here daily to check on you all but just didn't have the feel to post. I was a little concerned that you hadn't updated for a few days and was afraid that things weren't so great but good on Louis for the roast lamb, veg and gravy!! Everyone says this disease is a roller coaster and how true that is. It's really important for Louis to be as mobile as he can be, so little walks often, if he has the energy and breath to do so. I was told that hubby needed to get out of his hospital bed and moving around but sadly he just couldn't. So even if Louis can only manage a few steps, that's still very positive.

I really hope you will be able to get out to the street fair tomorrow. I must have missed you mentioning about having a shop, unless it was teddy bear related? Not sure if that's your hobby or business?

Hope you too have a lovely peaceful evening. Take care my friend xxx

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Re: Our Journey without chemo

Postby boa » Fri Jul 08, 2016 7:06 am

Good morning Marmalade
It's so good to read your post. PC is so unpredictable that a quality of life story such as yours is good to read and to hear Louis is eating well and pottering happily. I hope you get to the street fair and it's not bucketing rain as it is here in Fife.

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Re: Our Journey without chemo

Postby Judith16 » Fri Jul 08, 2016 1:03 pm

How wonderful to hear your news, I cant wait for mine to start eating again. Oh yes we get it all the time about how well he looks. I am sure people do expect them to be laying in bed all the time as you say.
Lets hope you get out tomorrow xx


Re: Our Journey without chemo

Postby Marmalade » Fri Jul 08, 2016 2:41 pm

I've tried everything to post the picture of teddy Hazel but I don't think this site likes pictures, I don't see any others and have tried uploading and putting them in line but no luck. I will post her on Moonraker Bears Facebook page which is public so you should be able to see her and all the other bears there.

Louis still good today but got a bit tearful when he needed help after using the loo. His muscles are so weak. It was no bother, just popped him in the shower then wrapped him in a big towelling robe and he laid on the bed to dry off, quick and not too tiring. Anyway, he is cheerful again now and looking forward to the tennis.

Much love to all M xx

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Re: Our Journey without chemo

Postby Dandygal76 » Sun Jul 10, 2016 12:00 pm

Hey Marmalade... I am not very good with IT so I cannot help with the picture but I have looked at the FB page and seen her with her pretty pink bow and flower feet. What a lovely career to have making bears. Tennis finals today so I hope Louis is well enough to be watching. It is hard on them when they have grown up in a generation where they were brought up to be strong and tough and look after us. I am sure it was very distressing for him to need help with basic needs - but we do not mind do we. I hope you are also well and doing okay. It is good that Louis is still walking about, if only a little bit, it is not nice to be bedridden.

Did you make it to the street fair? It is good for you to also get out and spend some time on you.



Re: Our Journey without chemo

Postby Marmalade » Sun Jul 10, 2016 1:02 pm

Good morning all,

Blessed Sunday morning! We had a lie in until 7.30 because we had both been restless. By 8am Louis was in considerable pain, chest, tummy and back so a quick dose of oral morphine for pain in general, hot water bottle for back and tummy comfort and our calming hand technique for sighing (sends relief messages to the brain and empties the lungs ready for some good oxygen) and even breathing for the heart/chest pain. We don't really know how much of each thing actually works but as a routine it gives us both something to do while we wait for pain killers to kick in which mercifully they did. 20 minutes later he was ready for his Weetabix, what would we do without it! Since then we have had 'quiet time'. I watched an episode of Morse and he slept very peacefully for half and hour. He is now looking at the jigsaw and cogitating on the prize crossword clues.

Yes DG, he will be glued to the mens finals!

I did make it to the street fair for half an hour and it was very busy. Nice to be out but not nice to continually have to respond to questions about how Louis is. After 30 minutes I'd had enough and was getting upset so came home. The nice neighbours who Louis sat are good people but quite stiff and formal. They want to help but have never cared for their own parents or anyone in this position. By the time I have written everything down, repeated things, reassured them and Louis it almost isn't worth the effort. I do have other friends who I think are more capable but they are all on holiday!!!

Dull damp day here today so we have declared it a day off, we are pretending we are on holiday and don't have to get dressed until later if at all and can loaf about watching TV eating blitzed ready meals and pottering. Actually, I don't like ready meals so we will have homemade soup and strawberries straight from the garden, yum yum. Hope you are all having a good day and bless you all for being there. xx

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Re: Our Journey without chemo

Postby Dandygal76 » Mon Jul 11, 2016 6:47 pm

The finals were great weren't they - I hope Louis enjoyed them. I also hope he is having a pain free day today, it does sound a bit of an ordeal waiting for the pain killers to kick in.

I do get what you say about having to update everyone with what is going on when you are out - it is hard. If I go out with friends I ban any form of cancer talk and they are very good at doing that for me. Unfortunately, having grown up in the village I can hardly step outside my front door without someone asking me for an update.

I hope you enjoyed just chilling out in your PJ's eating strawberries. You can't beat home grown English Strawberries and it was very fitting to have with the tennis on as well. x


Re: Our Journey without chemo

Postby Marmalade » Mon Jul 11, 2016 9:18 pm

Oh well, the ten good days have come to an end and everything Louis eats tastes of metal again so we did not get beyond a weetabix today and he has needed more oral morph to keep pain at bay. He spent most of the morning with what he calls 'fuzzy head', he can't clear it and his vision is disturbed including occasional short lived hallucinations. He tells me that he thought he saw me standing by the bed this morning but then realised I wasn't.
My understanding is that this is most likely to be to do with his liver function being impeded and toxins reaching the brain. It cleared at about lunch time and he feels ok again now. He really is a good and brave patient and rarely complains, just wants a bit of company and a hug when things are hard and who wouldn't?

Grand news, one of my brothers and his wife are coming on Sunday. Long journey for them but help and support for me for a couple of days and a long overdue catch up. Added to this the daughter is off shift later this week so I can have my hair cut on Friday. I'm being spoiled.

Hope all of you and those you care for have a restful night, for those who are lonely or grieving I am sending a hug, you are not forgotten, much love M xx


Re: Our Journey without chemo

Postby Marmalade » Tue Jul 12, 2016 11:34 am

I have just read that Catherine has decided to leave the forum. In the last couple of weeks several people who supported me when I first joined have decided to leave all with their own good reasons. I know some are still here and I bless them for that but today I am feeling that many of those who's stories and posts have kept me from feeling alone are drifting away...

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Re: Our Journey without chemo

Postby Dandygal76 » Tue Jul 12, 2016 11:43 am

Hi Marmalade, I know what you mean.

However, I also think that perhaps it is just the order of things. There are many old threads on here where people must have drifted away and perhaps that is a hopeful sign as well. That one day we will also move on and live differently happy lives.

At some point PC has to stop consuming us but for now... we are stuck with it. For those moving on from it, I only hope it is for good and positive reasons. x

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Re: Our Journey without chemo

Postby Dandygal76 » Tue Jul 12, 2016 11:55 am

I hope Louis is okay... it sounds lovely that you will have your family up at the weekend. There is nothing like having your own family around to help. Stay strong lovely lady. x

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Re: Our Journey without chemo

Postby Sueoliver » Tue Jul 12, 2016 12:13 pm

It is 6 months since my Mum passed away this month. I rarely post but I do read everyone's stories still. I am so glad Louis is ok and having some quality time. I do think of you all and wish you continuous strength on this journey. PC is all consuming and it is hard to get over ...if you ever do...
Love to everyone,
Sue xxx

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Re: Our Journey without chemo

Postby Wife&Mum » Tue Jul 12, 2016 3:28 pm

You are not alone Marmalade, there are still plenty of folk reading your posts, who care and wish you and Louis well, even 'though they don't respond directly. xx


Re: Our Journey without chemo

Postby Marmalade » Tue Jul 12, 2016 6:29 pm

DG you are, as always, absolutely right! I'm tired today and we had a shaky start to the day but have cheered up this afternoon and am back on form.

Hello and thank you to those who are watching and wishing us well, I feel a bit bad now because I've come across as quite needy when in fact there are many who have far less support than I have. I was just sad to lose some people who in my shrinking world have become welcome guests when they drop in on line. DG has of course put it all in context, it is good that they are moving on and we must not spend the rest of our lives living and reliving PC.

Louis feeling more human this afternoon but has been frightened by little fall, his fuzzy head and short lived hallucination so have spent virtually all day with him, watching TV (am now property buying and selling expert and can value almost any antique or curio) doing the crossword, the ironing, playing cards and generally hanging about. He always feels better when I am sitting with him, not chatting particularly, just there.

His GP rang for a chat today as she hadn't heard from us for a couple of weeks and was very reassuring that we are doing all we can and she is going to drop in for a coffee and a chat with him on Thursday. I am really impressed with the GP, very competent and exactly the right mix of honesty and empathy.

Beautiful day here weatherise and apparently we have the same tomorrow. Hope you and those you love are in good spirits. M xx