elsie
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Wow, what a surprise to see this topic – that’s my Jimmy and you have actually followed his story from diagnosis through my posts. I am essentially a very private person and used my initials as my name (LC – Elsie).
Once again, you helped Jimmy and his entire family throughout his illness. Thank you.
Leone (aka Elsie)Dear Phil
My heart goes out to you both. I have no words to express how much I feel for you or that will help with the disbelief and shock that you are feeling. But please know that I am sending you huge hugs.
Thinking of you and wishing you strength.
Elsie
(We’re from Sydney too)I’m very sorry and sad to read your latest post. I’m thinking of you both and sending hugs from Australia.
Take care
ElsieOur move to the new house went well and Jim is on the improve thankfully. Any stress or anxiety affects him badly at the moment but it is so hard to avoid it when moving. Thanks again to this board for lifting my spirits when I was down.
Jilly49 – Jill, as Lainy said start a new thread to introduce yourself and more users will read it. The people on this site have helped me enormously. It’s not easy getting info on CC in Australia and this site was like a lifeline to me when i needed it. I wouldn’t wish this disease on anyone, but it’s such a comfort knowing that Jim and I are not alone. Gem/cis chemo seems to be working for Jim but perhaps your situation is different, although I don’t understand why your doctor doesn’t think it worthwhile to try. However, I do know from experience that it is expensive for us Australians because it’s not an approved treatment for CC here yet! It sounds like you are doing well via the natural route and I am a little jealous. Jim wont have a bar of it. We asked his doctors should he watch his diet, should he cut out alcohol and the answer was: Eat what you want; Drink what you want!! So Jim does…… Good luck in you fight, your attitude sounds fantastic. And keep enjoying the shopping.
All the best
ElsieThanks for being here Lainy. Jim’s pain medication is slow release oxycontin 20mg twice a day, plus oxycodone hydrochloride (endone) 5mg for breakthrough pain. Also dexmethsone 4mg 1/2 a tab once a day, Zoton (iansoprazole) 30mg once a day but he can take another if needed, and Karvea (irbesartan) 300mg once a day for blood pressure. Also Flixotide inhaler twice a day and ventolin inhaler to help with his breathing.
Usually the endone works but yesterday it didn’t seem to and he needed to take 3 over the course of the day (he can have up to 4 a day I believe). The house we’re living in is on the side of a hill and has external and internal steps which really knock him about. The new house will be much easier for him. Frankly, I have no chance of him accepting a walker yet! But I will suggest it. I truely hope it is the stress of the last week that has caused this. As well as the move his sisters went home to England last Monday after a 6 week stay and it was emotional as it is more than likely they’ll never see each other again. Money and distance probably wont allow it. This last weeks just been a shocker and we’ve been surprised because of his good scan results.
thanks againThank you all for the information, it’s very helpful. We’re moving house tomorrow so it has been a very stressful week and Jim is not coping very well with all the activity. I just don’t understand how this cancer works. One day he is quite well and the next he is struggling to get a breath and we need to up his pain medication but it still doesn’t totally work. Yesterday was the worse day he has had and he had to ask to lean on me to walk from the lounge to the bedroom. He’s watching me pack up and move things and it’s breaking him that he can’t help. Sorry, I’m feeling down this morning and I just needed to tell someone. I’m hoping that next week when we’re in the new house that is single level (yay!) he will feel better.
Like you Margaret, he has a very special grandson and I know that he hopes to be around for the arrival of more grandchildren. Thank you for sharing your story. My heart goes out to everyone who is fighting this horrid disease. I had never realised how hard it is for people because it’s not just watching your loved one being ill, it is dealing with all the different medical people, it’s trying to cope with all the paperwork and bills and still tring to deal with normal life.
I’m sure things will be better tomorrow. Thanks for listening.
ElsieI just saw this post. That’s fabulous news and has brought a smile to my face. Thanks for letting us know.
ElsieWell, we had what we consider a win yesterday when we received the results of Jim’s 2 month scan! The oncologist told us he considers the cancer to be in the stable category. The masses in his liver and on his pancreas have only increased marginally, and the ones in his chest have stayed the same size. He does have one new small spot on the tip of his liver, but considering how quickly they were growing prior to him starting on gemcis we think it’s fabulous news and it has given us both a huge boost and the impetus to fight on. So he is scheduled for another 2 cycles of chemo and will then have another scan.
Could someone with more knowledge of gemcis than me check my understanding: Am I right in saying, when used in cases like Jim’s where the cancer has already spread, gemcis is not a cure but may slow the tumors growth in the hope of providing more time and delaying the inevitable? Does it ever shrink the tumors? Is that unrealistic? The onc was really quite happy with the results and neither Jim nor I wanted to dilute the only positive news we have had since July by asking hard questions yesterday, but now we are wondering….
Pamela – I have read your story and my heart goes out to you and your daughter. I’ve never experienced anything like this before and it sure takes courage some days. Your courage and love shines through your posts.
Margaret – Hugs from Wisconsin to Sydney! Wow thank you. In fact I do feel the support from this communtiy and everyone whenever I’m on the board. And it is a relief to be able to tap into it. Have you and Tom been fighting CC for over 3 and a half years? I admire the strength both of you must have and send you hugs back and all my best wishes for Tom. In a way I am thankful that we were warned Jim could only have a few weeks because it sure made us clean up and organise our life. It also made us determined to live life in four week blocks – to enjoy every month as if it’s our last and to see everyone we love more often. I think that worked for us but I know I am thinking further ahead after yesterday because last night I started planning Christmas.
My special thanks to Lainy. I really appreciate your positive and practical advice – not just to me but to all who post. You are brilliant.
Thanks again,
ElsieHello again. Jim has now had two cycles of chemo and is scheduled for a scan next week to see if it is having any effect. I am concerned about whether it is a good idea because I can see that his breathing is becoming more laboured and he is slowly getting weaker. He is experiencing acute pain episodes more often and can no longer walk any distance. I hope that he is not disheartened if the news is not good.
On the bright side – he is hardly experiencing any side effects from the chemo. It was found that his sore throat was caused by thrush so was quite easily treated and I hope that information may help someone else. He does have some mouth ulcers but thankfully no nausea at all so is still enjoying food and a drink!
His sisters are visiting from the Uk and whilst bittersweet it is lovely to see them enjoy their time together. After a 6 week visit they will be going home in about 8 days and I am dreading the farewell although I’ll be happy to have Jim back to myself (in between numerous visitors of course!).
I have been so busy lately that coming onto this site has only been occasional, but I am always encouraged by what I read. It is a relief to write what I feel knowing that someone else understands.
Thank you. ElsieI’ve never posted on a forum before, but I’m glad I took the plunge! I’m humbled by your responses and am surprised by how moved I feel. Thank you.
I couldn’t find Chloraseptic but bought Difflam throat spray which contains Benzydamine Hydrochloride which has helped a little and some ice blocks (popsicles) which Jim is very happy with, so I think they may become a staple in our house too. Again, thank you.
Elsie
