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

home again

Hi everyone,

Catherine and David are now home from their coast holiday with church friends. It was a lovely time with friends, refreshing for Catherine/Mum especially to be near the beach which she loves! David had good and bad moments, as usual most of his time was spent sleeping/resting but he was able to have a few outings, like to the markets one day. Mum drove him down to the beach where they were able to sit in the car and eat hot chips together while watching the waves.

C&D spent two extra days at the coast just the two of them which was a very nice peaceful time for them to spend together. David was also able to eat quite well which is such a blessing!

They came home on Thursday. David was booked in for another chemo sessions on Friday but he has made the decision not to continue with the chemo from here on in. He gave it a go but the side effects were just too much for him to deal with on top of how wretched and weak he already feels. (Side effects like extreme nausea, flu like symptoms, throat and mouth ulcers, amongst other things). It is always a balancing act between treating the issues and the treatment causing more issues in the mean time?! It is a hard decision but everyone around David supports his right to make whatever decision feels best for him. His wonderful medical team will continue to try to keep him as comfortable as possible.

DAY OFF

In order to give C&D some quiet time together in the midst of countless appointments, phone calls and lots of wonderful visitors, we are now trying to institute a 'day off' for them each week. This is so they can just get a quiet day of rest together, with opportunity to have quality time to spend together  and a bit of 'down time' from the relentlessness that is their life managing David's condition and everything that comes with it.

The idea is that this day will generally be Mondays, so we are asking that people not visit or call them on Mondays.

This will hopefully enable them to rest and have time together on this day. Their 'day off' will sometimes change if they have to attend an essential appointment on Monday, eg this week they have an apt with the oncologist on Monday so their day off (for this week only) will be Thursday.

If you are keen to visit on another day, please contact me and I will try to sort something out if/when David is up to it.

Iain is visiting with them this weekend (he comes to town from Sydney almost every weekend and is a fantastic support) and I was over for dinner tonight too. David was well enough to sit up for dinner with us and prayed a beautiful prayer, full of thanks for all the love and support he is receiving from everyone. So, just passing on how grateful he is and how loved he feels. Thank you everyone! :)

They have quite a few appointments this week with various medical people, so no doubt I will update later in the week on any news arising from that.

xx Kate

More chemo and more holidays!

Another update!

Today David had his second chemo session. I was able to take him in for it as a dear church friend Michelle looked after my son Miles (thanks!!!), and this gave Catherine/Mum time to prepare for their trip away (more on that later). However, just the energy it took for him this morning to get up, showered, dressed and there totally wore him out and he was also feeling very nauseous and weak. Couldn't even sit up or hardly talk, poor guy. I could tell the chemo nurse was very concerned when we arrived at how bad he was, so she ordered blood tests to check if he was up to having the chemo and also checked in with his oncologist. This meant a lot longer waiting around but the plus side is they gave him a bed rather than an armchair, so he could properly sleep (woohoo, upgrade!). Oh, and after a bit of rest and a drink etc, David did start feeling better, he wasn't totally wiped out the whole time.

So, we arrived at 11am and after checking bloods and talking with his oncologist, the chemo was able to start around 2.30pm and he finally got to go home with Catherine about 5pm (I left at 2.30 to get kids from school, Mum arrived to switch over).

I just have to share this photo and give a shout out to the AMAZING, lovely and dear Cancer Volunteers at the cancer centre, These ladies are so sweet, they walk around offering to get everyone a drink, a sandwich, whatever they want. They even have *real mugs* not those tiny plastic hospital mugs and even TIM TAMS not just boring plain biscuits. You can see from this photo that they really hit the spot with David :) These volunteers are just so wonderful, they are there every day and are so caring and supportive and kind to everyone, it really melts your heart and brings a tear to the eye too, that they give their time to show some practical love to the many, many, many people there getting cancer treatment. Anyway, just had to give them a shout out! I haven't found out details of what their 'organisation' is, or if you can donate etc, but I might try to next time. I could actually go on and on about the many wonderful organisations and people who do so many lovely things for people with cancer, it has really been so heartwarming to learn about them all.

Anyway back to David... who btw is blinking in this photo because he *always* blinks in every photo! I took three photos - blinked in every one!!!!! ;)

Anyway, another good thing to come from the day was that after seeing how he was struggling with nausea and energy they proscribed him another medication which is actually some kind of steroid. It is only a short term drug (he only can take it for about 2-3 weeks) but it should not only help give him a break from the nausea but also give him more energy, appetite etc. Needless, to say we are pretty excited to see if it does have this result, even for a little while!

On the down side, blood test results showed his haemoglobin levels were very low, hence his lack of energy. So he will probably be getting a blood transfusion in a week or so.

Anyway, the other bit of news is that David and Catherine are off on holidays again tomorrow (I know, I know, life is a holiday for these two right now, heehee! Good on them!!). They are going to the coast with four or five other couples, very dear friends from church who they usually holiday with each year. So glad they will get some time together and hopefully David is ok for it, they will just see how he goes. They are going for about four nights, but C&D are planning to stay a couple more nights afterwards, just to have some time together the two of them by the beach, which will be very special. Really praying they can make some lovely memories together and David will be well enough to enjoy it, chat, maybe walk down to the beach, etc.

I think that's everything for now. Thanks everyone as always for your love, prayers, support, meals, help, calls, etc etc. Love, Kate

chemo trial

Hi all,

Firstly, David has adjusted some of his meds on Thursday (he is on so many, it's a constant juggle!) to go off one of the strongest anti-nausea meds he was on as it really made him super drowsy and groggy.

On Friday he went to hospital to start his first round of chemo. As has been mentioned before, David has previously chosen to not do chemo as he wanted to focus on quality of life. However at this stage the Doctors suggested some chemo could help stem some of the gut issues he is having as a result of the tumour, so he has agreed to give it a try. Basically, if it makes things worse he will stop, if it makes things better, he will continue. We will see.

Anyway, Anne is in town for a few days so she and Mum took David to his first session on Easter Friday - Happy Easter ;) The patients are very well looked after there. He had two bags of the chemo meds, took a couple of hours. Afterwards, he actually felt great and very chatty and alert the rest of the day!! Which was just lovely. This was likely due to going off the strong anti-nausea meds the day before (he is still on two others, I won't even try to get into the details of them all here!). Anyway. he has up days and down days and we just all enjoy the good days when he has them. But we are obviously all grateful he didn't have any immediate bad reactions to the chemo. The chemo 'round' is one day a week for three weeks, with a week's break before it starts again. We will just see how things go and of course what David decides to do along the way.

Today (Saturday) he didn't feel so good, however :(

Anne has been in town for a few days (staying after family camp) which has been wonderful. and Iain also came down for the weekend. Together they have been helping out both Catherine and David with a bunch of things which is such a blessing and huge support!

So that is where things are at for now. Will update again soon once things settle in.

Love, Kate xx

home from our family holiday

Well, we are back from our very special family holiday! We got back home yesterday afternoon.

Twenty of us (11 adults, 9 kids under 7) spent 7 nights at a beautiful farm stay/Olive grove in Kangaroo Valley. It was wonderful, with many special memories made. We weren't too sure how long we would stay or how David would go but thanks to God, he did well and we were all able to stay the whole time. Beyond grateful for this blessing!! It was a bittersweet time but also just a precious time of togetherness and memory making. It was so good and healing to be together as a family.

The days were quiet and peaceful. We spent pretty much the whole time just hanging out at the camp as there was plenty to do there and it was such a gorgeous relaxing venue in the bushland. We spotted wombats and echidnas too! The kids had a blast running around and playing and feeding the farm animals. There was lots of laughter and of course noise from the many little kids!

David did spend most of his time sleeping/resting in his little cottage. At times one of us would go in and spend a little quiet one on one time with him, and once or twice a day he would come out to the common area of the camp (an undercover area with dining table, couches, ping pong table, campfire etc) to hang out with the group which was really special too. We had a wheelchair which was a huge help to getting him around and helped him conserve his energy for chatting! We shared a lot of laughs, stories and yes, tears too.

Sitting around the campfire together one night was a really lovely time. Roasting marshmallows and potatoes and damper! He also ate really well for most of camp (each family group would make a big meal for everyone each night, so there was plenty of delicious variety to motivate him!).

On the day we were leaving he had quite a bit of pain but we were thankfully able to get him home with various driving configurations to make him most comfortable. Home now, settling back in and will see where the days to come take us. I know David was so grateful to be able to go on family camp and we so appreciated all the love and support that made it possible.

Will update tomorrow on 'the state of things' now we are home, just wanted to get this post up ASAP as I know many lovely folk are eager to hear. It was SO sweet to know so many dear friends, family and church were hoping and praying this holiday would happen. It did, woohoo!!! :) We felt you all cheering us on, your thoughts and prayers were so encouraging.



Wanted to also share these stunning family photos taken by my dear and incredibly talented sister in law, Alex. Incredibly precious images that mean so much to us all!

Our quirky, wonderful clan xx

Miles climbed onto the couch where his Papa was resting, so keen for a cuddle.

Nine little cousins :) Moments of mayhem and magic xx

heading home, and then away

Hi all,

Well, the latest is that David is doing quite well lately, he has been eating full meals and everything! Really good to see him enjoy a steak dinner :)

The medical and hospital staff have been working together to prepare David for his trip away and are comfortable with his trip and the support he has set up. They have been wonderful. 

God willing, the plan is that he will 'check out' of the hospital tomorrow sometime (Tuesday), then we all leave for our family holiday in Kangaroo Valley (2.5 hours away) on Wednesday. He will be well set up with all his medications to manage pain and nausea and our dear friend/nurse Helen O on 24 hour call if we ever feel we need more advice (as well as all his other medical support staff of course!). We will also get a wheelchair for getting out and about if he needs/wants it.

The plan is to try a round of chemo when we get back. David is just going to see how his body responds to it. 

We have lots of contingencies and support in place for while we are away. The awesome cancer care coordinator is even checking into finding a local palliative care nurse to come check in on David. The original plan was for us all (11 adults, 9 children) to stay for a week but we are going to take it very much on a day by day basis. It will be whatever it is, supporting David and Mum will come first, we may cut it short if he isn't going too well, and that will be ok. 

The place we are going is a very peaceful little 'farm stay' type place in an olive grove! Lots of animals, wide open spaces, and pools and playgrounds for the kids, and best of all, peace and quiet in the bushland for us to just hang out together. We are very much looking fwd to time to be together, make memories and support each other.

Appreciate your prayers for David and all of us over the next week. Please be aware that reception is likely to  be very patchy up there so may not be many/any phone calls or blog updates till we get back. (The owners of the cottages is aware of our situation and we have use of their landline for any medical situations).

Thanks everyone, for your ongoing support. How blessed we are to have such a caring community. We are truly grateful.

Love, Kate