A forum for family, friends and carers of pancreatic cancer patients

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
Marmalade

Re: Our Journey without chemo

Postby Marmalade » Sun Jun 12, 2016 3:29 pm

Hi all,

Things have been more calm for the last couple of days although Louis is eating hardly anything. I sometimes sit on the bed with him and stroke his back and can feel his bones sticking out more each day. We haven't bothered with scales for ages, sounds ridiculous but 'ages' is in fact only weeks, Louis doesn't want to know. It is only 14 weeks since the diagnosis was confirmed and we were told to expect between 3 to 6 months. I no longer push him to eat as it exhausts and upsets us both. 3 weeks ago he took to his bed to all intents and purposes. He no longer gets dressed (he does wash and shave) and spends most of his time in bed because that is where he is most comfortable.

I am afraid to say we are having a good day as it always seems to herald some dreadful and unexpected turn but so far today he has had a whole Weetabix and three forkfuls of some roasted veg that he could smell cooking and fancied. He usually does try something at breakfast but as the day goes on he just doesn't want it. I take breakfast upstairs to him at the moment as walking downstairs makes him too tired to eat. Today he came down mid morning, rested on the sofa then wandered around shuffled some paperwork for half an hour then went back up to bed. That counts as good and the exercise may help to get his gut to work a little bit.

Next week we have the local Physio/OT lady coming to 'assess' him to see what if anything she can offer in terms of aids. I think a pressure mattress may be sensible but I can't see Louis letting anyone clutter the house with bits of medical equipment. Then on Thursday it's the hospice dieticians assistant coming to 'assess' him. He is sick to death of being 'assessed' by every different discipline and wonders why they just can't have one questionnaire that they all use. I wonder that too! I tried to get the district nurse on the phone to prescribe some cream to prevent pressure sores. She refused unless she had seen him. I wanted to point out that we were talking bedsore prevention here not a prescription for smack but held my tongue, just. In the end I bought it over the counter and will get the GP to add it to the list tomorrow.

So, the sun is shining and my boy is stable, we are blessed. Sadly my heart is breaking for PW so sitting here weeping for her, for me, for Louis and for all of us who are living this nightmare. M x

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Our Journey without chemo

Postby sandraW » Sun Jun 12, 2016 11:36 pm

Marmalade, Glad the sun is shining for you today, it does help to lift the spirits a little, especially as you have a bit of stability too. You are doing such an amazing job and it just makes you wonder why the professionals seemed to make such hard work of some of the more mundane tasks. It beggars belief that DN cannot just prescribe some cream, to make Louis's care a bit easier without wasting her time and yours with a visit, when we all know they are under pressure.
It's amazing how we all get so involved emotionally with complete strangers on here, but we do, I too shed tears for all the sadness we go through, I know how much it helped me, when I lost Trevor, to know that others understood how I was feeling and what we were going through.
I hope all the assessments go well and at least provide some help or extra support to you both, take care love sandrax xx

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

Re: Our Journey without chemo

Postby boa » Mon Jun 13, 2016 7:31 am

Marmalade, I can understand your frustration and Louis' too with all the assessments that seem to be required. From my own experience I realise now that it is distressing to everyone to try to make someone eat so I think you are doing just the right thing in not pressing Louis. It's a difficult time and you are a great support for him. Catherine

Linda G
Posts: 108
Joined: Fri Sep 11, 2015 2:06 pm

Re: Our Journey without chemo

Postby Linda G » Mon Jun 13, 2016 4:38 pm

Hi Marmalade, hope Louis is comfortable today and you are able to have some quality time together between "assessments", the professionals don't make it any easier in some cases, do they?
Take care
Linda G

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

Re: Our Journey without chemo

Postby Proud Wife » Mon Jun 13, 2016 9:28 pm

Oh Marmalade, I know that feeling only too well. I read every single post on this forum from the day hubby was diagnosed until 8 months later when he'd completed 12 cycles of folfirinox and came out the other end unscathed. Only then did I dare join in the chat with the intention that hubby's story would encourage and help those newly diagnosed. I have subsequently learned that as soon as I said how good he was, his cancer started progressing. It's that fear of tempting fate that I can totally relate to so don't say it!

As I have said to DG, I will be supporting you every step of this wicked journey. All you can do is continue the wonderful love and caring and make sure Louis is as comfortable as possible. You two have such a special bond which can't be broken. Someone said to me today, he's not gone for good but he's just gone ahead of you, which I think is so apt.

The only advice I can give you right now is just to make sure you don't have any regrets, that was my biggest fear. I can put my hand on my heart and say I did everything possible and although my best was not good enough, it was not for the want of trying. I know that you are caring for Louis in exactly the same way and he could not ask for anything more.As for the professionals, you are in charge and if Louis doesn't want assessments, Louis shouldn't have them. He should be allowed to dictate how this cancer affects his life, he's earned that right.

Take care and keep us posted.

The last sentence of your last post Marmalade says it all but also tells me, what a lovely compassionate caring lady you are. Where else can a bunch of strangers share their most inner most emotions which having to explain why. We just know. xxx

T

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Our Journey without chemo

Postby sandraW » Fri Jun 17, 2016 10:39 pm

Hi Marmalade,
Was just thing of you both and hoping things are still .....stable, and that the sun is still shining on Louis and you too of course, love sandrax xx

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

Re: Our Journey without chemo

Postby Proud Wife » Sat Jun 18, 2016 9:37 am

Me too. How is Louis? How are you Marmalade?

I can't stop thinking about you because I know exactly what you are going through.

Be strong xx

Marmalade

Re: Our Journey without chemo

Postby Marmalade » Sat Jun 18, 2016 12:04 pm

You lovely people!

Louis has been very up and down recently. His irregular heartbeat is being well…irregular to the point where we wonder if he will get through each episode. He has not eaten anything more than a ginger biscuit for days but this morning he has had a ginger biscuit, a cup of tea and half a Weetabix hoorah! He has also had a shower and is now resting with the newspaper. I have really upped his creon which I empty out and put in stewed apple, since reading a post from one of the PCUK nurses. I realise now that he has been on a ridiculously low amount and it does seem to have helped this morning. I even asked the hospice dietician and she asked a GI consultant and still they were saying he only needed 10000 with snacks. Anyway, since it's almost impossible to overdose I have put it up, and our doctor daughter agrees with me and she is an anaesthetist!

A hospital bed was ordered but after six hours of being in it he begged me to let him go in his own bed - he didn't need to beg as I wouldn't have him do anything that made him less comfortable so I reconstructed his 1926 Vono frame bed (we have renewed the divan and mattress!) and the hospital bed is on the landing waiting to go back.

Our daughter sent him a handwritten letter in his card for Fathers Day, it was absolutely beautiful and about all the things they have done together that she will always cherish and it is now in his dressing gown pocket. I see him touching and patting it on and off. She is here later today and he will love that.

On advice from someone at the hospice 'caring' course I have purchased a baby monitor with a 300 meter signal so that I can be downstairs or in the garden while he is resting and not worry that I can't hear when he needs me. Very reassuring.

We will see how the day goes, I won't tempt fate. Much love to you all, M x

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Our Journey without chemo

Postby Didge » Sat Jun 18, 2016 2:00 pm

Quite a few people have asked me to come back so I am giving it a go but will probably not be on too much! Glad Louis is having a good day. Embrace every one of them! I think the hospice caring course sounds such a good idea. Much better than learning as you go along! Hope he enjoys your daughter's visit xx

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

Re: Our Journey without chemo

Postby Proud Wife » Sat Jun 18, 2016 4:06 pm

Oh Didge, welcome back. A heartfelt welcome back. I am so, so, so, so pleased to see you back here, the forum for me, was just not quite the same place without you.

As for you Marmalade, we are going to meet up one of these days! When the time is right. We have so much in common.

One thing that has kept my son and I going this past week is collecting things for a memory book I'm going to make. Keepsakes are so important. In that regard, the handwritten letter from your daughter would be something you could both cherish in the years to come as it obviously means the world to Louis. If a memory book appeals to you, perhaps Louis might want to contribute something, if it's not a too difficult question to ask him. I wish I'd had the chance to ask hubby to write a piece for the opening page.

Totally agree with you, don't tempt fate. Small small steps my friend. Thank you for the update, I was a teeny weeny bit concerned about you both xxx

Linda G
Posts: 108
Joined: Fri Sep 11, 2015 2:06 pm

Re: Our Journey without chemo

Postby Linda G » Sat Jun 18, 2016 5:50 pm

Hi Marmalade, hope Louis is comfortable and you are keeping well too. I think it was a good idea to get Louis back in his own bed, there is nothing like your own bed. I think of you often in these stressful times.
Regards
Linda G
XX

Marmalade

Re: Our Journey without chemo

Postby Marmalade » Sun Jun 19, 2016 2:07 pm

Thank you all, as always you lift my spirits simply by being there, bless you all x

Now can anyone explain this for me? in the last 72 hours Louis had had several migraines and some very disturbed vision, things appearing upside down, problem with outer field vision. He can read which is odd but sometimes closes one eye... His blood sugars have been below 10 for a couple of weeks now and 7.4 for the last few days even without Mettformin as he is not really eating. Is this vision disturbance common/usual? I will speak to the doctor tomorrow but for now he is managing. The TV appears to spark a migraine almost immediately which is pretty awful for him as at least it is a form of entertainment.

M xx

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

Re: Our Journey without chemo

Postby Proud Wife » Sun Jun 19, 2016 3:30 pm

As a migraine sufferer, Louis has my every sympathy. I have quickly learnt that PC follows no pattern at all and everyone is so different. My hubby was complaining of a blocked, popping ear which of course is nowhere near as bad as what Louis is currently going through but I only mention it as there can be such random symptoms. I do know though, if I don't drink enough, I can get a migraine, how is Louis fluid levels? Migraines can affect vision but I've personally not experienced upside down images. TV can trigger me too when I'm border line going down with one. I am really sorry that TV is causing adding to this, I know it's an important form of entertainment.

Let us know what the doctor says tomorrow. xx

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

Re: Our Journey without chemo

Postby Dandygal76 » Mon Jun 20, 2016 10:28 pm

Hi Marmalade. I hope Louis is feeling better this evening. I am always amazed at the plethora of different symptoms this disease brings - I have not heard of migraines but every day when I read a new story there is a new symptom related to this situation that I have not heard of. You and Louis are doing so well with everything you are facing and I agree with everyone, if he wants his own bed then that is where he should be, if he doesn't want an assessment then so be it. A journey without chemo should mean that Louis is supported in how he feels comfortable and what he wants. I know I take on an aggressive fight for treatment options etc with my dad but that is because my dad still wants to fight and attempt to beat this and when he is tired it is hard for him but when he is well he thanks me for fighting for him (even though he gets very moody at the time). I do understand now that when and if that changes, when and if the treatment stops then all that would matter would be making everything exactly as he wants it to be. Everything is about their choices, I break down doors but only to open choices... most of which are rejected! You are supporting him in such a loving beautiful way and I am glad your daughter got to write and say some special things that has comforted Louis and I wish you both a peaceful and restful night. x

Didge... it is great to see you back! x

Marmalade

Re: Our Journey without chemo

Postby Marmalade » Tue Jun 21, 2016 2:19 pm

Dandygirl, you are one in a million and I love you for it x