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Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Our Journey without chemo

Postby Dandygal76 » Wed Jul 13, 2016 10:15 am

Hey Marmalade, sometimes we are allowed needy moments, I know I have had them. I also know what you mean about the shrinking world and the people on here being a source of comfort. People do care on here but we all cope in our own ways and that does not always marry up to what we need individually and specifically at a point in time. But on the other hand, the fact the group is not large also makes it more personal on so many levels.

Your brother will be with you on Sunday and that will be lovely. Are you doing a nice roast dinner. My family are still sticklers for a proper Sunday roast with home made Yorkshire puds!

I am sorry Louis had a fall and is fuzzy. I think you are doing amazingly and calmness and playing cards etc is just what you need at this time. I cannot imagine what you are going through as you deal with the end stage of this disease. We are here for you. x

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Our Journey without chemo

Postby Proud Wife » Thu Jul 14, 2016 8:51 am

Good morning lovely M

Please don't ever, ever apologise or even suggest that you are coming across as needy. Hubbys moto when first diagnosed was "I'm weed and you don't get rid of weed". I am exactly the same and I Therefore I will remain on this forum because you can't get rid of me either!!

I am currently only able to access internet via smart phone which makes it really difficult to post, especially as I keep losing what I type but normal service should be resumed in about a weeks time when i can join in more of the chat.

Until then, rest assured I am only a post away from anyone that needs support and I send my love and best wishes to each and everyone of you, have a peaceful day dear marmalade and Louis, you are never far from my thoughts. Lots of love xxx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Our Journey without chemo

Postby Dandygal76 » Sat Jul 16, 2016 12:08 pm

Hi Marmalade. How is Louis doing and did you manage to get your hair cut yesterday. I hope everything is still ticking along as best as it can under the circumstances. I know I have taken a couple of days away from the research and posting but I did keep an eye on your thread to check if there was any developments. I am always in the background somewhere. I hope Louis is feeling up to your brother coming tomorrow and that you have a lovely day. x

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Our Journey without chemo

Postby Dandygal76 » Mon Jul 18, 2016 10:04 am

Hi Marmalade, how is Louis and did you have a nice weekend with your brother coming over. I hope you are all doing okay. It is such lovely weather for you to enjoy the garden with your monitor in tow. x

Marmalade

Re: Our Journey without chemo

Postby Marmalade » Tue Jul 19, 2016 1:01 pm

Morning all,

Is it warm enough for you?

Louis has been very up and down over the last few days. He is eating and drinking less and complains that his legs shake if he has to stand because he is so weak. He is also having more pain and using more oral morphine despite his slow release morphine being increased last week. Hope you are not eating because he is also very upset that he needs help to clean himself up after using the lavatory, his tummy muscles are so weak that he can't use them to push everything out so feels uncomfortable (unfinished business) and has to keep going back and forth and having numerous clean ups. It is not so bad when we are alone but having guests in the house makes it more stressful for him as he feels they may know he has a problem and is embarrassed. They didn't know of course but it has made him miserable and exhausting him going back and forth, just in case..

Last week the doctor asked him why he didn't hire a stair lift so he could go downstairs. He prevaricated but the following day asked me to investigate the possibility so I did and a nice chap has been round and quoted £40 per month and a one off up front fee of £260 for installation and removal. We can cope with that but this mooring Louis has gone off the idea, mainly because he finds sitting for more than 10 minutes uncomfortable and because he is worried about being able to get to the lavatory downstairs if his legs give out as they seem to be doing. Upstairs he is four small steps to a lavatory downstairs its longer and he would certainly not want a commode in the sitting room. So the jury is out and we shall see how he feels in a day or two.

Yes, I had a good day on Friday and got lots of jobs done including hair cut and clear glittery shellac nails! The time whizzed by too quickly! Sunday saw the arrival of my brother and his wife who mucked in as best they could although I can't find anything in the kitchen currently. Our daughter came to join us all for lunch yesterday and today brother and wife have moved on to her parents. It was wonderful to see them but I have decided that we are not going to have any more house guests apart from our daughter and her husband. No matter how people try to help they are more people to have to consider.

The washing is on the line and the house is calm so Louis and I hope to catch up on some rest (very disturbed night) this afternoon.

Hope you are all in good spirits M xx

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Our Journey without chemo

Postby Proud Wife » Tue Jul 19, 2016 3:26 pm

Hello M

Thank you for the update, not a day goes past when I don't think about you both but know that sometimes you just don't feel for posting.

So pleased you had your hair done and shellac nails! I've got wildfire red at the moment although they are starting to lift. I hope it gave you a real good boost.

What dose of slow release morohine is Louis on? Hubby went up to 160mg twice a day with 20ml of liquid morphine 3 times a day and I'm really curious to know if that was particularly high. I'm at that stage now where I'm holding a post Mortem in my head about everything, wondering if I could have done better, did hubby know his time was up etc etc but this thread is about you not me and I'm not really able to articulate how I'm feeling anyhow.

With regard to the stairlift, personally I would be scared to tempt fate. We had an OT come visit the day before hubby went into hospital for the final time. She measured up for a 2nd banister rail and left little stickers as to where the holes should be drilled. That was the first thing I saw as I came back home "after". Apart from what you say about Louis not being able to walk too far, it's far better to say every week we should have had a stair lift then have one fitted and not need it, if that makes sense? If and when walking 4 steps becomes too much of a problem you'll find a solution at that time.

I do hope you manage to have a restful afternoon and catch up on some much needed sleep. You must take care of yourself as well my fellow she lion! May you and Louis have a pleasant and peaceful evening.

I'm still on my phone rather than my computer so please forgive any typos! This small screen is driving me bonkers!
Much love xxx

Marmalade

Re: Our Journey without chemo

Postby Marmalade » Tue Jul 19, 2016 9:33 pm

A very quick note,

PW, there was absolutely nothing more you could have done. You did your best and no one can do better xx

Louis is on 80mg twice per day in capsules and circa 20ml per day oramorph. It goes up by 10mg twice per day every 7 to 10 days or has been doing so.

I have to go as we are watching Midsomer Murders together…

M xx

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Our Journey without chemo

Postby sandraW » Wed Jul 20, 2016 10:10 am

Marmalade, Just to let you know I am thinking of you and Louis too, you are never far from my thoughts. I agree about the house guests, proud men like your lovely husband just don't cope well with these kind of personal problems, that happen at this stage of illness, we understand and I am sure your guests would have understood too but Louis will have felt it greatly.
sending you both love strength and a cyber ((hug)). xx
PW Thinking of you too and sending a hug too should you need one xx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Our Journey without chemo

Postby Dandygal76 » Fri Jul 22, 2016 12:11 pm

Hey Marmalade, I hope you are both okay. You know where we are when you want to let us know how things are. x

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Our Journey without chemo

Postby Wife&Mum » Fri Jul 22, 2016 4:13 pm

Thinking of you Marmalade and Louis
W&M xx

Marmalade

Re: Our Journey without chemo

Postby Marmalade » Sat Jul 23, 2016 12:34 pm

Hello all,

How are you all doing in this heat!

My poor Louis has been feeling poorly the last few days, a mixture of nausea, tummy and back pain and just feeling "absolutely rotten". His appetite has disappeared as one might expect with nausea and getting his morphine capsules down is uncomfortable.. Our lovely GP, Helen came and as always spent a long time with us and gently examined him. Although he is not constipated his gut is just not working properly so she advised a children's suppository to clear everything through and that now might be the right time to set up the syringe driver. As I write the words my tears come because although I know that subcutaneous infusion will mean better absorption than via the gut, it has been a marker in my head since day one so, as my daughter put it, it's an unwelcome milestone. I know that there are many advantages and that if we can get his gut moving better he may perk up and eat more and need less morphine because of better absorption, but in my heart I know this is a clear indication of a new stage and one which will take him further away from me. For the first time, later today, a nurse, not me, will attend to his needs.

All the time I feel I am on a see-saw as he doesn't seem ill enough. Does that sound mad? The sun is shining, he is alert, walking a little, talking a little (gets tired talking) reading the paper, watching TV, laughing at jokes even. I know exactly where we are going but still, there is a part of me that imagines he will be better tomorrow or the next day, or the day after that maybe. How can he be so sick and yet so well? There must be so many of you out there who have felt the same.

I am even more determined to make the time we have good time and this morning we have had excitement with Louis calling me to say there was a huge (four feet) grass snake slithering across the lawn towards the house. I had left the back door open so raced downstairs to close it only to see the snake inches in front of me! I slammed the door and it changed direction along the back of the house and into the undergrowth. We have had snakes in the compost heap before but never this close to the house. Louis thinks it was after a big toad that has been keeping out of the sun in an opened bag of compost on the patio. We needed a diversion and we certainly got one!

I hope you all have a good weekend, that the sun shine warms your hearts, that those who morn find comfort in the beauty of life and that those still caring for loved ones make the most of the time.

Much love, M xx
Last edited by Marmalade on Sat Jul 23, 2016 2:22 pm, edited 1 time in total.

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Our Journey without chemo

Postby Wife&Mum » Sat Jul 23, 2016 1:28 pm

Warmest wishes for many more good times for you and Louis. W&M xx

Judith16
Posts: 25
Joined: Sat Dec 19, 2015 7:09 pm

Re: Our Journey without chemo

Postby Judith16 » Sat Jul 23, 2016 5:29 pm

Dear Marmalade
Sending you so much love and hugs. I know where you are coming from with them looking so well, though rather thin of course. Sometimes when I see him conversing with friends and family you think maybe its just a dream and you will wake up and everything will be back to normal, but then when you see them in pain, struggling to get up the stairs and not interested in everything it comes back and hits you like a ton of bricks again.

We are enjoying this weather, I have picked runner beans, tomatoes and beetroot out of the garden. I have a glut of spinach too. Lets make the most of this wonderful weather.

Have a lovely weekend xx

\Judith

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Our Journey without chemo

Postby sandraW » Sun Jul 24, 2016 11:17 am

Marmalade, I understand how you are feeling only too well, sending a big ((hug)) love sandrax xx

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Our Journey without chemo

Postby Proud Wife » Sun Jul 24, 2016 3:30 pm

Hi M

Normal service has resumed I'm pleased to say and I will be able to post more often.

I really hope Louis has perked up again? Hubby found glycerine suppositories (bought from Tesco for the princely sum of £1) very useful for having a good old clear out.

I can totally relate to what you say about Louis not looking ill enough. I have spent the past 6 weeks looking at photos over and over and over again trying to make sense of how hubby could have died. Apart from the photos from when he was diagnosed, throughout his 14 months of treatment, he never looked unwell - you'd never have known he was terminally ill. Even during his last 24 hours, because he'd not lost so much weight and always had a good skin tone, he just looked like he was sleeping.

I know this is so much easier said than done but try to see the syringe driver as something simply to make Louis more comfortable and something that he simply needs, such as meds for high blood pressure or blood glucose etc, rather than the start of a new chapter. Louis sounds in a much better place than my hubby when he had to have medication administered in this way so as hard as it is, try to take it in your stride because as you say, Louis can perk up again. Remember the word ROLLER COASTER (or is it 2 words?!!) that's what this PC journey is - there will be ups as well as downs along the way.

Looking forward to reading your next update and hoping it will be a lovely, serene and positive one.

Always here for you M

Much love xx