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Marmalade

Re: Struggling with it all

Postby Marmalade » Sun Jul 17, 2016 6:28 pm

Thanks for posting Judith, I think about you both.

There are lots of things available for pain so keep the pressure on the GP who is probably the person you need to be best friends with as the hospice will refer to the GP, they all share information, and as I said, do try over the counter remedies alongside, they work differently and can help. My husband often feels better when he has a couple of paracetamol alongside his morphine. Peppermint tea also good although if he is like my husband drinking or eating anything gives him gas. Sadly it's the way of things. Loads of creon helps and we open the capsules and deliver them in apple puree as Louis struggles with the big capsules. Do you have some oral morphine to top up with if the pain is not well controlled? You definitely need some. We find that Louis slow relase morphine (every 12 hours) starts to need topping up every week to two weeks. We top up with oral solution in 5ml doses for a day or two to see what level keeps him comfortable and then ask the ~GP to increase the slow release ones to that level.

Don't accept that he has to be in pain, ask for drugs that you can administer like oral morphine if he needs help and it's out of hours.

Let go and have a cry if you like, it's absolutely ok to do that!

Much love M xx

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

Re: Struggling with it all

Postby Judith16 » Sat Jul 23, 2016 4:15 pm

Hi Marmalade
Its been a difficult week for us both, but I think we are coming out the otherside. My hubbys problem he feels like he is giving in if he keeps taking more and painkillers. Plus he wasnt totally honest about the amount of pain he was in to the hospice nurses, so I got quite cross with him and told him, that I could not watch him suffering like this and he has to be more honest with everyone. He struggles that no one wants to find out what is causing the pain, they just try and cover it up with more medication. So our wishes are to find out whether the pain is caused by the cancer or something else. If its the cancer then ok, he admits that medication is the way forward, but if its and infection or a stent needed, then thats what we have to do.

So next week, his bile stent is being replaced as it is blocked. He doesnt need a duodenal stent, so that is good. He does have oxynorm, which hes is taking regulary alongside paracetamol which seems to be helping. Hes very breathless so he uses a nebuliser 2 to 3 times a day aswell.

The last two days have been much better, we are even going out together this evening to friends, I could not envisage that two days ago.

We see the hospice doctor next week, so we may get patches then, at the moment I am recording all pain medication, so they know what dose to be given.

Sending love to all xx

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

Re: Struggling with it all

Postby sandraW » Sun Jul 24, 2016 10:20 am

Judith, I hope your lovely husband continues to improve and you get out and about a bit more and that the stent helps, take care sandrax xx

Proud Wife
Posts: 727
Joined: Sun Jan 17, 2016 9:28 am

Re: Struggling with it all

Postby Proud Wife » Sun Jul 24, 2016 2:39 pm

Hi Judith

Again, echoing what I've just said to Marmalade, ROLLER COASTER. I am so pleased that you managed to go out last night after such a difficult week, how was your evening? I hope it was really enjoyable and a much needed short escape from reality.

I know what you mean about not getting answers. We were never told why hubby's tummy was so swollen when all the tests for ascites and blockages etc came back negative. It was very much, oh you've got PC that's the reason but it had to have been something specific that might have been treatable. We shall never know. I'm pleased you are pushing for answers though as to what's causing your hubby's pain and then get the appropriate treatment but I totally agree he should not have to put up with pain.

The very best of luck with the hospice doctor next week. Please update us as and when you feel you are able to. In the meantime, you are both in my thoughts and I am willing you both well.

Much love
PW xx

Dandygal76
Posts: 737
Joined: Sat Mar 12, 2016 9:49 am

Re: Struggling with it all

Postby Dandygal76 » Wed Jul 27, 2016 10:05 pm

I hope things are okay Judith. You are in my thoughts. x

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

Re: Struggling with it all

Postby Judith16 » Sat Aug 06, 2016 6:03 pm

Hi
Its been a pretty difficult few weeks, they thought Mark had a blood clot and that was why he was so breathless, it showed up in a blood test. So hours before he was due to have his stent replaced he had a CT scan on the chest. No blood clot, thank goodness, but it does mean the cancer is throwing up abnormalities in the bloood.
Mark was hoping great changes after the stent replacement in his appetite and energy, unfortunately that has not happened this time, it is gradually dawning on him, that the cancer is progressing

His breathing and breathlessness is a problem, the nebuliser helps a lot, but we are now waiting for oxygen to arrive. Our local hospice is brilliant, our nurse is in contact often and she visited us at home this week, we usually go to the hospice. We are now waiting for morphine patches too as the oxynorm and oxycodone are not helping especially at night!! Oh the nights feel especially lonely when he is in pain and you dont know what to do. I now have the info I need from the hospice.

Today was a good day to start, Mark was well enough to go to a meeting, whilst he was there i went to my wonderful wool shop for a cuppa and chat, also bought some gorgeous wool too, note to self must hide!! He the insisted on going to Tesco with me, he was in a tesco mobility scooter, brilliant. By the time we got home he was feeling pretty bad, he could barely walk to the lounge, could not breathe, very scary. Got him on the nebuliser, with ventolin and that has helped,but he has been exhausted since. Now asleep on the .sofa.

Tomorrow another day,planned a bbq with our children and grandchildren, so hopefully he will be ok.

Dandygal76
Posts: 737
Joined: Sat Mar 12, 2016 9:49 am

Re: Struggling with it all

Postby Dandygal76 » Sun Aug 07, 2016 9:20 am

Hey Judith. I hope you and Mark have a lovely day today with all of your family, it is such precious times. I am sorry you nights are lonely, my mum is the same because my dad was always the one to hold her up during the tough times but they can't be that person anymore can they. I thank god I have Steve everyday to steady my ship and I have said before this must be so much more difficult when it is your partner.

We are here though and we are willing and supporting you through these times and all that matters right now is today... that is your mantra isn't it? For today just have a wonderful BBQ with your lovely family and to hell with the rest of it.

Much love x

Proud Wife
Posts: 727
Joined: Sun Jan 17, 2016 9:28 am

Re: Struggling with it all

Postby Proud Wife » Sun Aug 07, 2016 11:29 am

Fingers crossed for that Barbie Judith, sounds just what you need.

I've asked over on Veema's thread but thought I'd ask again here in case you missed it - what does Sertraline are you on? My dose was increased once, when it didn't work for me at starting dose and the 3rd and final dose a few weeks before hubby passed.

Lots of love
xx

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

Re: Struggling with it all

Postby Judith16 » Sun Aug 07, 2016 5:02 pm

Hi PW, I have started on 50mg, though I know it shall probably go up. FYI, I took them back in 2011 not long after i was diagnosed with malignant melanoma, then due to problems with my son they were upped i think to 150 /200 . I then reduced them slowly after 3years with the help of the gp. I didn't have any problems coming off them at all.

Yes we had the bbq, it was a good time, sun eventually came out. All gone home now thank goodness, just the clearing up to do!! Think I may just take a glass of wine out to my sunny spot for a chill out before finishing off.

Dandygal76
Posts: 737
Joined: Sat Mar 12, 2016 9:49 am

Re: Struggling with it all

Postby Dandygal76 » Sun Aug 07, 2016 10:03 pm

Judith, I hope you got to have your nice glass of wine in the sun. I love that photo on your facebook page.. such a special photo. I could imagine you all sat in your garden today. Special times for a very special family. x

Proud Wife
Posts: 727
Joined: Sun Jan 17, 2016 9:28 am

Re: Struggling with it all

Postby Proud Wife » Tue Aug 09, 2016 10:59 am

Hi Judith, ah ha - then you know all about it! I'm now on 150 mg which has enabled me to cope the way I'm coping.

I think I messaged you on facebook but may have sent it to someone else by mistake as I am a facebook novice!

Would love to chat over there if you feel up to it? xx

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

Re: Struggling with it all

Postby Judith16 » Tue Aug 09, 2016 6:23 pm

Hi PW, would love to chat to you on facebook, How do I contact you? Do I need to go through here, I am quite happy to let you have my email address.

BBQ went very well, hubby was exhausted and has been paying for it since. We had an oxygen cylinder delivered to us today because of his breathlessness. We were expecting something small and portable we could take out, instead we got this huge bottle. A phone call to be made tomorrow. It has disappointed hubby as he thought with a portable oxygen we could get out more, he could barely walk across the garden today. He is fed up with just sitting and watching tv, hes not interested in anything, which is not like him at all. Tomorrow he is hoping to go into his Company probably for the last time as he cant really get up the stairs. He has been running the company for 25 years and most of the employees have been there that long too, so he feels very responsible. The other directors will take over the running of the business, but he is feeling very sad and depressed at the moment.

Its such a tough time for us and my heart goes out to each and everyone on this forum. Much love

Judith

Dandygal76
Posts: 737
Joined: Sat Mar 12, 2016 9:49 am

Re: Struggling with it all

Postby Dandygal76 » Tue Aug 09, 2016 6:37 pm

I will link you on FB now. x

Dandygal76
Posts: 737
Joined: Sat Mar 12, 2016 9:49 am

Re: Struggling with it all

Postby Dandygal76 » Tue Aug 09, 2016 6:39 pm

Make sure you check you 'others' folder but have linked you. x

Dandygal76
Posts: 737
Joined: Sat Mar 12, 2016 9:49 am

Re: Struggling with it all

Postby Dandygal76 » Tue Aug 09, 2016 6:53 pm

Judith, I am so sorry you are all going through this... it really is pants. My dad and your husband should be enjoying the fruits of all their hard work right now. Much love to you all. x