New Pain Management

Hi everyone,

Just a small update again as things move along. 

David is now being managed by the Palliative Care team, he has both a Doctor and nurses who visit a few times a week as well as being on call 24/7 which is such a great support. Poor David has been having a lot of increasing burning pain in his torso/back area lately, as well as nausea. He had been unable to sleep very well because of this, and hardly eat, which of course makes everything harder on him, he has been very weak, vomiting etc. 

When I was there one day last week and he was pretty bad, Catherine/Mum called the Palliative Care nurse who came over quickly and ended up putting a butterfly port (? I think it's a port?!) into his arm, which means that pain and nausea meds can be given via syringe (the nurse taught us both to do this). The nurse said that the other meds probably weren't being absorbed very well, especially due to all the issues in his insides, plus these new meds are more slow release so keep him a little more constant. Since then, he is feeling a bit better/less burning pain which we are very thankful for. Able to sleep better too.

They are talking about bringing in a hospital bed to the house to make things easier for David and for Mum who is the amazing nurse as well as devoted wife! We will see if/when that happens. If his pain/nausea gets really bad again, a few days in hospice to get things under control is also an option.

He is mostly sleepy, very tired and weak. But in his good moments he can still have a little chat and a smile and even a joke, and those are very precious times indeed.

Update again soon. Thanks as always for the encouraging cards and letters, the nourishing meals that help inspire David to eat when he doesn't often feel like it, the visits and texts and most of all, the love and prayers poured out on David and Catherine which is definitely lifting them up and strengthening them through this tough time. They are deeply touched and grateful for YOU ALL, and the rest of the family is on their behalf too!!!! Much love xx Kate

update

Hi all,

Sorry I have not updated in a while, there has not been much 'news' as such. Obviously David is still very unwell and in a lot of pain, exhaustion, discomfort. We have learned that is often hard to tell what is the symptom of the disease and what is a symptom of the various medications he takes. He has been on a short course of steroids for the last few weeks, and it has had the lovely side effect of giving him more energy (in very short bursts) which means he has been able to have some good conversations, short outings, etc. This has been a real blessing to him and to everyone who gets to enjoy his company! :) Some precious memories have been made.

Due to other side effects he needs to come off the steroids now but may go back on them another time... we shall see, under advice from his Doctors of course.

Over the last couple weekends, David and Catherine have had all four of the interstate kids (Iain, Woz, Meg and Anne) come to visit for a weekend which has been just lovely for them all. And a great support too!

I want to mention again how grateful C&D are for the ongoing pouring out of support, prayers and practical help. They are so touched and grateful - everyone has been amazing . David's family are always so eager and ready to do anything for their beloved brother and son.  Our beautiful church family has been quietly chugging along providing D&C with meals for months now - an incredible help and blessing in so many ways. David wants to write something to say 'thank you' to everyone via this blog, so when he gets the energy I will post that up.... keep checking back :)

I know they have also been greatly encouraged by the text messages, emails and cards arriving in the mail. Though it is not always easy to talk about what they are going through over and over to every person, I know every card that comes in the mail really makes them smile, lifts their spirits and strengthens them both in this tough journey. They definitely feel lifted up by the community around them cheering them on... so thank you all for that. If you would like to send a little card or something, please do... I don't want to post their address on the web, but you can email me on livinglovinglaughingtogetherATgmailDOTcom if you would like it, and I will email you their details.

Knowing how to respond to the common question of 'How's David?' is a tricky one. Obviously he is not doing well, and he is not getting better. But some days he is a little more energetic/comfortable/able to chat than others. Generally he is very tired, very weary, and in a lot of discomfort as the tumour grows to such a significant size and pushes all his other organs around. I can't imagine what this feels like, but I know it isn't good. He has a lot of pain and sometimes nausea. How he feels can change within minutes through out the day. Generally his energetic bursts last about 30 mins (of talk time or whatever). We have learned not to plan or predict but simply take each moment as it comes, supporting him through the down times and embracing the good ones. Catherine is working tirelessly and endlessly as his beloved wife (or 'girlfriend' as he likes to call her), carer and support. She is doing a wonderful job in an incredibly hard situation.

Thanks all, will try to touch base again soon xx Kate