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Marmalade

Re: Our Journey without chemo

Postby Marmalade » Sat May 21, 2016 8:19 pm

Hi everyone and thanks for your concern

I find it incredibly touching that a group of strangers can generate such a feeling of safety and support. Funny word 'safety' but it's not easy to say things and be honest with people around us, it may be too blunt or too raw, or for fear of causing distress or embarrassment to friends. I do feel that it is safe to say what I feel on here.

Louis has been experiencing more pain and eating a lot less. He has finally accepted that we can't control his blood sugar with diet anymore and has started on Metaformin which, so far, has not had any unpleasant side effects. Hoorah for that! The 20mg of steroids caused mayhem. His blood sugar went crazy and he felt terrible so we left it off for a week. Because of the pain and lack of appetite we reintroduced it today at 5mg in the hope that it would help with any inflammation/pain. Our daughter says it has only mild pain relief properties but does help with mood and appetite so here is hoping. Because he is eating less and losing more weight everything is a huge effort for him. He is now virtually housebound because he is just too exhausted to go anywhere. For the first time he has said that he just wants it to be over, a phrase I heard often from my Dad all those years ago… I can understand his feelings.

The pain is interesting. It is in a variety of sites at different times, his back fairly consistently, his tummy becoming more frequent and his chest on and off. These pains are nearly always in the late afternoon, evening or night and never so far, before 3pm. He is convinced that it's digestive and it may well be but more creon doesn't make any difference and nor does having only light or liquid food so I'm not convinced but of course he then worries about eating anything at all…

Louis does not like 'adulterated food" no amount of cajoling will entice him to eat anything with added protein even the juices. He says that it is bad enough to be dying without having to eat that stuff, so we do our best with Horlick's, porridge, scrambled eggs, peanut butter and soup etc. He was always resistant to change and there are no signs he is going to be any different now.

He was awake for most of last night with what he describes as indigestion which turned to pain for a couple of hours between 4 and 6am. He spent today in his dressing gown but has been up and down stairs a few times and seems fairly comfortable.

Our entertainment this week has been going through some gold! Over the years he has bought and sold bits and bobs of gold, a left over from his Belgian family being made refugees twice and having only what they could carry and gold can be used in any country. Don't get excited, we are talking bits and bobs in a carrier bag not chests full of Krugerrands. Anyway, among the items was a very flimsy 1860 5 franc piece which Louis said was given to his father circa 1908 by an uncle. I love family history so set about following up on the story and getting out some very ancient photographs which had been carried to England in 1914. We passed several afternoons happily updating the family tree.

Thanks again for the concern and contacts, it all helps.

M

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Our Journey without chemo

Postby Didge » Sat May 21, 2016 8:45 pm

Marmalade, metformin is believed to restrict growth of pancreatic cancer to some extent. Perhaps that will help Louis to accept it. I do hope he can improve the pain as that can be very debilitating and I can understand how people in constant pain just want it to 'be over'. Glad you have had some enjoyable time with the gold! X

boa
Posts: 131
Joined: Thu Jul 09, 2015 1:13 pm

Re: Our Journey without chemo

Postby boa » Sun May 22, 2016 8:15 am

Marmalade, good to see your post but sorry about the pain for Louis. I'm glad you find this forum supportive as I have done. I hope today you will be good for you both. Catherine

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

Re: Our Journey without chemo

Postby sandraW » Sun May 22, 2016 9:36 am

Hi Marmalade, what a lovely thought chests full of Krugerrands still the franc piece sounds very interesting, these special times will mean so much.
Sorry to hear Louis is still in pain, its so debilitating and I to can understand his feelings, but its hard for you to hear.
Your daughter must be an absolute godsend, the steroids always sent Trevor's blood sugars sky high too, now you have reduced the dose and started the Metformin, I hope things will improve for Louis soon, it does help getting things off your chest, and knowing that there are others that understand exactly what you are going through, take care sandrax xx

Marmalade

Re: Our Journey without chemo

Postby Marmalade » Thu Jun 02, 2016 5:24 pm

Hello all,

I can't believe we are at the beginning of June already. I don't like to think about it and want to stop the clock. Since I last posted Louis has more or less taken to his bed. He comes downstairs for breakfast and lunch most days and if he feels strong enough has a walk around the garden but he is really only comfortable in bed. Despite the morphine he finds any pressure on his tummy uncomfortable and likes to be at an angle of 45 degrees. Ah yes the morphine, we had a few days on Oramorph but are now on Zomorph and Mettformin for his massively high blood sugars which were 32 (!) but are now circa 11.

Our GP came on Saturday morning and spent a long time chatting to Louis and they completed the TEP form. It was important to Louis to have this done so that there is no misunderstanding about his wishes. I have to say that the GP has been fantastic since leaving the hospital and treatment team and joining the palliative care team. She is actually on holiday in France this week so made sure we had prescriptions for all the 'just in case' drugs which I've now collected and gave me a number to get straight to District Nurses over the bank holiday.

All was well for a few days but Louis then had a bout of severe diarrhoea. We are not sure what is going on as everyone was expecting things to go the other way because of the morphine. He drank but didn't eat at all yesterday and has had little bits of starchy food today. We have our fingers crossed that it was a passing bug but our doctor daughter thinks he needs more creon and Ometprazole as he had been belching for England the day before the attack. The specialist nurse is not so sure, her rationale is he is eating less so the Creon should be ok. So, we gave him some Immodium and increased the Creon a little, it seems to have helped with the belching and uncomfortable gas. As the GP says, it's all alchemy from here in…

So, he continues to lose weight but is feeling better because the pain is under control, we are fortunate to have a good sized house so he can walk around the upstairs and he tries to go up and down stairs a couple of times a day. He has limited energy so activity of any sort is interspersed with little rests. Apart from that he appears to be content with his TV, music centre and the Daily Telegraph including crossword and being waited on. Something is happening to his eyesight though. I think maybe there was some damage from the very high blood sugars and will discuss it with the specialist nurse tomorrow. Seems to be his outer field of vision and he reports seeing shadows.

The sun is shining here this afternoon although we were promised heavy rain and Louis has just been out to admire the garden. Lovely!

M x

boa
Posts: 131
Joined: Thu Jul 09, 2015 1:13 pm

Re: Our Journey without chemo

Postby boa » Thu Jun 02, 2016 5:39 pm

Hello Marmalade, I was just driving back from shopping and thought about you and was going to post to ask how things were going but here you are! I'm glad Louis is getting some pleasure from the garden, his music and paper. The thing about pancreatic cancer seems to be its unpredictability. But you are both coping so well and I do admire you. I hope you continue to get some enjoyment together. Catherine

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

Re: Our Journey without chemo

Postby Dandygal76 » Thu Jun 02, 2016 5:49 pm

Hey Marmalade, you are both doing marvelously and I am also glad you are enjoying the garden. I just thought I would mention that weight loss etc is also a side effect of Metformin. My dad was much more comfortable when he swapped from that drug. It is probably not the same but maybe worth a thought. We also struggle with blood sugar and I think I may inquire about insulin injections and be done with it. Sending you hugs. x

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

Re: Our Journey without chemo

Postby Proud Wife » Thu Jun 02, 2016 6:34 pm

Hi Marmalade

I enjoyed reading your update! So many similarities, and I totally agree with you about GP care -v- hospital treatment team. As a diabetic myself, I know only too well that high blood sugars can make you feel really poorly. The highest I've ever been is around 24 during a short course of steroids and I felt awful. Pancreatic cancer and sugars of 32 must have been truly miserable for Louis so I'm sure that's got something to do with it. If they go high again, as much as Louis will probably hate it but it might be worth asking about insulin as to lose his eyesight completely due to diabetic complications doesn't bear thinking about, he's got enough to cope with as it is.

How are you coping? I hope you are managing to look after yourself too?

Please keep us posted xx

sandraW
Posts: 1044
Joined: Thu Oct 31, 2013 5:38 pm

Re: Our Journey without chemo

Postby sandraW » Fri Jun 03, 2016 6:27 pm

Hi marmalade,
I am sorry I missed your post. Glad to hear the GP was so caring and helpful, it must be reassuring for you that your daughter can give such informed advice too. Its good that Louis is still managing to get downstairs for some of his meals at least and a bit of fresh air in the garden, will make him feel better too.
You are doing an amazing job, but we just do it don't we, we find that inner strength to just carry on as we love them so much, we would do anything to make their journey easier.
It seems as though you just have to juggle the doses, and mixture of meds to get the right mix for that individual, but its hard just to get comfortable I know how Trevor was. Fingers crossed the increase in creon and the imodium helps to settle Louis's tummy, sending you some extra strength and a cyber ((hug)), thinking of you love sandrax xx

Fifi

Re: Our Journey without chemo

Postby Fifi » Sun Jun 05, 2016 10:19 pm

Hi,

How is the diarrhoea for Louis now? My Dad suffered terribly with diarrhoea. Loperamide is supposed to be good at stopping it, has he tried that?

It has been a nice day here today, hoping Louis was able to enjoy his gatden again today.

Leila xx

Marmalade

Re: Our Journey without chemo

Postby Marmalade » Mon Jun 06, 2016 2:52 pm

Hello all and thank you so much for your posts. I'm still getting used to support and concern from total strangers and it's wonderful! I'm thinking a lot about PW today and have tried to reply on her posts but I can't get the words right. I had to be told by the doctor daughter at the weekend to stop trying so hard. She was right of course although I thought it harsh at the time. Me fussing about and jumping on every symptom and trying to beat it is exhausting for me and for him and is probably not helping either of us. I know that anything I do cannot push back the tide and that morphine is more effective at making him comfortable than I am but its so hard not to. In my head I know that we are on run down but my heart says something different.

Enough of the maudlin stuff! The sun is shining and Louis is having a sleep after a short walk in the garden. Louis decided that the cause of his diarrhoea was the mettformin and would not take more than half the prescribed dose. The Diarrhoea stopped, he feels better generally and his fasting blood sugars have been 7.4 and then 7.2 but he was not really eating. Today they are 10.4 having had two small snacks yesterday so he says he will take 2/3rds of the prescribed dose today. I can only assume that the short foray into taking steroids sent his body into some sort of overdrive and it has taken time to calm down after stopping them. The specialist nurse is as foxed as we are. I think he is also a little bit yellow although I may just be over analysing again!

His pain is increasing and we are giving oramorph every few hours so the zomorph will need adjusting and, although he is taking a bit of food and says he can swallow, tablets and anything that needs chewing is now a problem so it's soft stuff only.

He doesn't have any bed sores and I am concentrating on making sure it stays that way and that we don't turn the room into a hospital environment with too much medical looking kit unless it cannot be avoided.

The best thing of all is that his lady hair dresser has agreed to come and cut his hair on Wednesday. She doesn't do home cuts but when I explained she agreed to come on her day off…people are so kind. Louis is delighted as he thinks he looks scruffy and my attempts to tidy his locks was not well received ha ha.

Hope you are all able to spend a little time in the sun today, much love xx

boa
Posts: 131
Joined: Thu Jul 09, 2015 1:13 pm

Re: Our Journey without chemo

Postby boa » Mon Jun 06, 2016 3:29 pm

Marmalade, thanks for keeping us up to date. It is so difficult when our head says one thing and our heart another. It's a very difficult journey. I'm so pleased that he enjoyed his walk and is looking forward to the hairdresser's visit. Catherine

Marmalade

Re: Our Journey without chemo

Postby Marmalade » Fri Jun 10, 2016 7:33 pm

This disease certainly knows how to keep you on your toes. We had a good day yesterday with Louis eating a little and not feeling too much discomfort. he gets up and comes downstairs when he has the energy and walks about the house upstairs when he can.

Then yesterday evening he started to have what he describes as "draining away" feelings. We think this is when his heart is skipping beats and his blood pressure falls. It seems to come out of the blue, sometimes with pain and sometimes not. Since he is now off all his heart medication we have been expecting this. Since then we have had a number of episodes of the same or similar thing. Sometimes we just breathe through it and sometimes we have Oramorph. Louis really wants this thing over and done with and who can blame him?

Rubbish day but that is the way of it with PC. Hoping for a quieter night for my man and a better day tomorrow.

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

Re: Our Journey without chemo

Postby Proud Wife » Fri Jun 10, 2016 10:47 pm

May your wish come true Marmalade. I hope and will pray tonight it does. 3 families and their lives about to be shattered and hearts broken.

I meant to say, not only are our men multilingual but both have younger wives too!

Take care my fellow forum family member xxx

Fifi

Re: Our Journey without chemo

Postby Fifi » Sun Jun 12, 2016 11:10 am

Hi Marmalade,

Did Louis have a better night? I hope he did.

This disease is so incredibly relentless and cruel.

Leila xx