lynn-from-downunder
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Hi All ,
Just letting you know that my beautiful husband passed away peacefully in hospital on the 29th December 2016. His ability to accept the knocks he was dealt, and grab what life experiences he could with both hands, was an inspiration to us all. He made sure he had a great Christmas Day with his 2 boys, Daughter in Law and myself but at 5pm that day he said he had to lie down for a nap. From then on , he went into a state of semi consciousness and because both his liver and kidney functions were declining, he deteriorated from there. Two positives- he was not in pain and his passing was not drawn out.
Thanks all of you, for your support to me during Greg’s illness and God bless those still fighting this disease and your loved ones. We are all individuals and this disease is not always a fast looming death sentence. Some people have had treatments that have made a significant impact on the length of their survival rates and quality of life. Don’t ever give up hope! There will be a Cancer Free World one day- lets hope it’s just around the corner.
Love
Lynn
Ps. Will add a little post to the Remembrance Section soon.Its been a rough week and a half since we saw Gregs Oncologist. The doc suspected that the cancer has spread to the brain thus causing Gregs lack of Co-ordination. He prescribed steroids to reduce swelling & to help him with ” normal ” body functions. These meds with the addition of a blood transfusion have made a remarkable difference ( albeit a temporary one). He’s so focused on fighting this crap disease so he can enjoy his boys company at Xmas time It was the start of the weekend when Greg started deteriorating before the steroids 1st kicked in. The pallative care nurse whos service only operates through the week during the day, called on the “Silverchain”nurses for us, where we have 24 hr access to medical care & advice. They provide an assistant nurse in the morning to shower patients and a registered nurse to visit in the late afternoon to discuss Gregs condition. If you are worried about your loved ones condition you can speak to a nurse anytime-even late at night and early morning. Because Greg has improved so much for the time being the Silverchain nurses have been put on hold. But what a remarkable system we have in place over here. Until Greg got sick I never knew anything like this existed. They provided us with equipment so speedily as well. We are still in the care of the daily community pallative care nurses though.
We had another hiccup during this time. Greg started peeing alot of blood and the drs didnt seem to know why. Turns out his INR level was too high and causing internal bleeding. Greg has been taking the blood thinning tabs Warfrin to avoid blood clots with his chronic kidney disease. So the warfrin was stopped. I need to contact Gregs kidney spec to see how long for. I was speaking to Gregs Onc tonight & he said both Gregs kidney Spec & himself think the risk of bleeding through taking warfrin far outweighs the risk of possible blood clots with Gregs condition at the moment.
Greg continues to amaze me with how he is so strong and appears to be taking all of these challenges (for want of a better word-a swear one might be good at the moment) in his stride.
Hope you can all manage to find some type of peace this Christmas whatever your situation.
Kind Regards
LynnWell I’m back.Wish I had some great news that Greg was now cancer free or that there is now an instant cure for cancer but no such luck.
Greg has deteriorated in the last week. His hands have started to get the shakes and he keeps dropping things. He has more pain and his mind is not as alert. He is not steady on his feet.
His kidney spec rang tonight to inform us that his kidney function was low and the level of cancer in his blood had skyrocketed. He wants to give Greg a blood transfusion to make him feel better thru Xmas. We see his Oncologist tomorrow & will find out more then.
Just wanted to thank Lainey especially for her last post to me and for sharing her poem.
Gregs 2 sons are coming for Xmas. I just hope Greg is ok for their visit. We may have to call an early Xmas.
God bless all of you out there fighting this disease and your families. I wish only the best for you.
Regards
LynnYes well, its 11:15pm and I cant get to sleep. My man is slowly deteriorating and I feel I am already starting to lose the man he was.He is so tired all the time and cant really do many of the things he used to love doing outside. He has lost weight and is quite pale.He is ok when awake but has lost his spark.I think thats going to be the hardest thing for me- seeing Greg decline. I already watched my mum do that for 6 weeks before she passed away from lung cancer 5 years ago.
Anyway I know we have a lot to be thankful for- that Greg has been basically symptom free for about 5 months so we could get out and enjoy life. Plus we were fortunate enough to visit his mum and dad a couple of months ago, who live away. Gregs dad passed away last week.
The pallative care nurse came to see us today-our 1st visit. We told our oncologist that Greg wants to be at home when he gets sicker so we just wanted to get this organised for when we really need their help. Our appointment with the oncologist is next Monday to find out the results of Gregs latest blood tests.
Can someone boost my spirits a little? Anyone got a good joke? A corney one that might make me smirk is ok too.
Wishing the best for everyone
LynnYes but when does a liver specialist or an oncologist say I want a biopsy of this tumour so it can be tested and possibly be used to help this particular patient.? Originally the liver specialist who operated to unsuccessfully remove the tumour in Gregs liver , told us a biopsy would not be possible to check if it was malignant. They said there were too many blood vessels in the liver to successfully get a biopsy. Also when the operation was aborted, one of my husbands lymph nodes was removed and we were told it contained CC. Could they not work out the mutation from that or does it have to come from the tumours themselves? And is it a request from a patient for a biopsy to be done and if so, is it a question of whether the patient has the funds or is LUCKY enough to find a clinical trial for the particular gene mutation they have? It would be different protocols in different countries too. Nothing is bloody easy with this disease! (excuse the languague) More questions for our Onc I suppose ,who is now on hols for a week.
Anyway Greg is continuing to improve after his op yesterday and getting back to his normal self again. Hopefully, he will be home in 4 days all going well.
Will be in touch.
Regards
LynnThanks again guys.
It’ s great for us to hear some good news for a change.
Can anyone explain the process of how drs take a sample of a tumour to see if there are genetic mutations and then what is this appropriate targeted therapy? Plus no doubt this would b costly. We do not have private health insurance. This above process has not even been suggested to us but I have read snippets on the discussion boards here. May not be an option for Greg???? Our onc has not discussed this with us. Maybe we r not as skilled up on CC in Aust as you r over there.
Anyway
Bye for now everyone.
LynnHi Guys,
Well I’m swinging from the fans right now ! (well not quite). Gregs procedure to insert a metal stent in a section of his bile duct ,went well 2day. Already the colour has started to come back in his face again.So hopefully both his kidney and liver functions will continue to improve and he will be back to how he was b4 he came into hospital.The aim is for this to last as long as possible. That is until the next challenge arises or that elusive “miracle cure” of course.
Bye for now
Lynn From DownunderThanks everyone for ur support. I’ll let u know how things go. If its good news u will hear about it soon.
Regards
LynnWell Greg had an MRI as well & yes the specs think the tumours have progressed substantially in a quick time period.There is a blockage in a few branches of major bile ducts. His jaundice has been getting worse and both his kidney and liver functions are not good. Yesterday he had about 5 turns where he was staring blankly at times then mumbling incoherently which was very difficult to watch. The drs believe it is because of the toxins in his liver that cant drain out due to the bile duct blockage.
At least we were given some hope, when we were told that the gastrointestinal spec will do the procedure to insert a stent to drain some of the bile ducts. There is a chance when they get in, that the situation may be worse than they think and they cannot do the procedure. (Please not dejevue! We have been there & done that with the liver resection op that we never had! Thats so debilitating- thinking sumthing really successful can be done only to have ur heart broken with nothing to be able to be done ar all!) We can only hope.This procedure will be attempted tom afternoon.
Today Greg had no turns and didnt have to sleep at all while I was visiting. He was a lot more alert, showered himself , had a shave and sat in a recliner doing wordsearches. He didnt want the tv connected- Our tv programs over here leave a bit to be desired. Free tv Greg says- no wonder its free. You would never pay for it!
If hes feeling ok I’ll get the tv put on for Sun, as it is our Rugby League grand final over here & Greg likes watching the footy final games.
Anyway hoping for a good result for Greg tom. I am a bit scared as I can’t bare the thought of returning home with no hope of improvement for him.
Regards LynnDecided to make an appointment today with Gregs Onc. I knew it was the only option but we were just so devastated that our long awaited trip away may be jeapordised .But our minds were really made up early this morning when Greg developed this terrible itch. He couldnt stop scratching all over his body. It was driving him mad so I took him to emergency at a nearby hospital. They took some bloods & found his kidney function was extremely low. I had also noticed over the last 2 days that the whites of his eyes were looking a bit yellow and some of his skin. His birilbin level is really high in his liver which may explain the itchiness. I left the hospital at 5.30pm & his itching had finally settled down. They took an ultra sound late this arv to see if there was a blockage in any bile ducts & if so they informed us they may have to insert a stent to open it up. The results were not available b4 I left. I will go into the hospital early to catch his kidney spec and Oncologist on their hospital rounds to find out more info.
Thankyou for your replies. I know sumtimes I get a bit lost in all the info in peoples posts but it is fantastic that people out there like yourselves take the time to read peoples many varied life experiences.It is also good that you can communicate with people that have been in similar situations dealing with this disgusting disease. I have a great lot of caring people around me but until you go through the same experiences you dont really know what people are going through.
Fingers crossed for us tomorrow.
Regards
LynnHi all,
Im a bit afraid the honeymoon phase of this horrific journey is coming to an end. My husband was dry retching early Sat morning(a wk ago) and last Thu was vomiting He was lucky to get an app to see his Onc later that day. He said he should take an anti nausea tablet before each main meal. The Onc told us the tablet would help remove food quicker from his stomach.This has helped the nausea but he has felt a bit light headed which we think is a result of this tablet. It says on the packet that it can cause a lack of alertness & Co-ordination. So we decided to only take these tablets when he actually felt sick. He has had tea tonight but says he feels bloated, so he has taken a tablet. He has also felt more tireder the last few days & has had to lie down throughout the day and has been going to bed at night earlier. We went into town to do a few things about 8.30 am a couple of days ago. We got home about 10.30am & he slept for 4 hrs.
I know we have both been looking forward to our trip away to the beach in a wks time & he keeps saying he will b ok & that we will be going. He was going to have all his scans when we got back & see the onc on the 17th of Oct. However I am wondering whether to c his Onc again soon to see if we should get scans asap to see what is going on in his body & possibly start the chemo drug Taxol as that seems to be our only option atm with his chronic kidney disease. Oh he was also complaining of aching legs when he went for a lie down today. I dont know whether to leave it a couple more days to see how he goes or whether to book him in to see his Onc again tom.Suppose Ill just have to see what my hubby thinks tom morning. We have SO been looking forward to this holiday.
Any suggestions & are his symptoms indicating cholangio progression.
LynnDerin
So happy to hear you are cancer free! May you continue to live life to the fullest. Stay happy and healthy!
What a day it will be when they find a (dare I say) vaccine or if not, a cure for all type of cancers!
Regards
LynnHi Everyone. Just wanted to let you know how blessed I am that although my hubby Greg has this hideous disesase, he has remained “Healthy” since he went off chemo in May.
We have both come to an acceptance that his condition is terminal but we have filed it in the back of our minds and continue to live relatively normal lives.
We went on our train trip to Bundaberg in June and had a great holiday catching up with Greg’s family and some old friends of his. We are off on another road trip in a few weeks time for a 5 night stay at the beach. We can’t wait!
Greg continues working in his vegie garden and looking after his fruit trees and mowing the lawn on the ride on mower. He loves doing this. We also purchased an I Pad as he loves playing games on there as well. Plus we have our two golden retrievers which he adores and are always his shadows.
I work as a teacher aide 4 days a week ,but have Fridays off. We SO treasure the little things and usually enjoy a cup of coffee at our local favourite café and go for a drive and have lunch out somewhere as well.
Greg continues to eat well. The cancer has metasticised to a few of his bones but does not have any pain. He does get tired if we have a big day out or he over exerts himself physically but I am so amazed at how well he appears to be. We know it will not last forever, but it really makes you appreciate life in general.
We did see Greg’s Oncologist 2 weeks ago. He yet again decided to delay a new chemo drug for Greg to try as he has been feeling so good and because we want to go away on our trip soon. He did inform us that the cancer level had increased a bit (from 47 to 61) which we need to keep an eye on. We will see Greg’s Onc in the middle of October and will have the full blood test, CT and bone scans to see what is going on inside his body.
Just wanted to wish each and every one of you all the best.
Lynn
Ps. These are Greg’s shadows!
Tiah
Have you tried the Olivia Newton John Institute in Victoria? They have recently been on the media informing the public of the benefits some patients have had with Keytruda. I contacted them recently via email as they were running clinical trials with Keytruda. My husband was not eligible as his kidney function is low but it might be worthwhile contacting them about your mum’s suitability.
Regards
LynnHello Again Daisy,
I can feel the frustration in your latest post about being in the dark about your mum’s condition. You need to make a long list of questions to ask and keep asking them until you get some answers. I know it must be hard for you trying to get that information. You mentioned that your mum doesn’t handle things well. Why don’t you bite the bullet and ask a few questions in front of her to the Oncology team?. People can be a lot stronger than you think. I didn’t realise my husband’s emotional strength, until he was diagnosed with a chronic kidney disease and now on top of that CC!. If you still are worried about discussing things in front of your mum, tell your Onc or someone in the team that you would really like to ask them a few questions in private. I’m sure they will be more than willing to have a chat to you when they have some spare time- out of earshot of your mum.
There is info out there on this sight and the internet but every individual is different and you need to see how the disease is affecting your mum through talking to her doctors.
Strength to you!
Lynn
