Caren Posted May 18, 2009 Share Posted May 18, 2009 We went to Clinic to see the Oncologist to discuss dad's recent hospital stay and while we were there the Cancer nurse ran a few tests and they readmitted him to hospital with low oxygen levels and tachycardia. They think it's caused by the tumour pressing on the valves of the heart. He will be having some radiotherapy this week for symptom control. They have explained to us that there are no more Cancer drugs to try as even while on the Tarceva the Primary tumour carried on growing and spreading and also my dad's body isn't coping well with it all. I asked to speak with the Oncologist alone and told him that I wanted the cold hard facts now. He told me that it isn't good news and that dad has a matter of weeks, possibly a couple of months, left. I know that a lot of you don't agree with asking, but I wanted to know so that I can start getting my dad's things in order. I can also see for myself at how fast he's deteriorating that it wouldn't be too much longer now. They have said that he will be staying in the hospital for at least one week to run tests and try and get his heart into a normal rhythm. While he is in there they will arrange some oxygen to be sent home ready for when he gets here. So I guess this is the beginning of a long and hard journey for my dad Quote Link to comment Share on other sites More sharing options...
jaminkw Posted May 18, 2009 Share Posted May 18, 2009 Caren, I'm so sorry the news was so grim. I can understand that seeing your father's decline and knowing they have nothing more to offer in terms of treatment, why you would ask the question. Remember though, they are giving you only a educated guess. It could be much faster or much slower. Have you given thought to contacting hospice. You can see evidence all over this site of what wonderful assistance they can offer. You also often hear appreciation from patients who adamantly didn't want them in the beginning. They seem to have a knack for winning them over. Good luck dear and take care of yourself so you have the strength to labor through this with your Dad. He is so lucky to have you. Judy in Key West Quote Link to comment Share on other sites More sharing options...
SandraL Posted May 18, 2009 Share Posted May 18, 2009 Oh Caren. I am saddened to read your update. Hopefully they can get dad feeling much more comfortable in the hospital. And then he can return to your loving home and have some good days. I wish you strength and peace. Sandra Quote Link to comment Share on other sites More sharing options...
recce101 Posted May 18, 2009 Share Posted May 18, 2009 Caren, I'm very sorry to hear this news, and that the Tarceva wasn't helpful. I wanted the cold hard facts now...I know that a lot of you don't agree with asking... I believe it was appropriate for you to ask now. I think what most of us discourage is asking about prognosis as soon as the diagnosis is made, before anyone (including the oncologist) has any idea how well a particular patient will respond to the various treatments available. My Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Patti B Posted May 18, 2009 Share Posted May 18, 2009 (((((Caren)))) I am so saddened by this news. I pray for peace and strength for both you and your dad. Please keep us posted. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
Flyman35 Posted May 19, 2009 Share Posted May 19, 2009 ((((Caren))))) I'm so sorry to hear that dad is not doing well. I pray for strength for you in the days ahead. Denise Quote Link to comment Share on other sites More sharing options...
Caren Posted May 19, 2009 Author Share Posted May 19, 2009 I would like to thank you all for your continuing support. It really does mean so much to me to know that you are all here looking out for one another. (((HUGS))) I don't really know what to think right now, or what to feel, or even how I should be feeling, if any of that makes any sense at all? I feel fine, actually, but the I feel very guilty for feeling fine and so I guess that really I don't feel as fine as I think I do. I haven't cried....yet.....I'm sure that in time there will be plenty of tears. I know that I should now maybe start helping my dad make his arrangements for his service and such but I don't know how to broach the subject with him, or even if I should be broaching it, or waiting for him to say something? I have so many questions running through my mind but I don't know how to ask any of them Quote Link to comment Share on other sites More sharing options...
dahknee Posted May 19, 2009 Share Posted May 19, 2009 Hi Caren, the end stage is never an easy or a welcome place to be, I have a good friend who lost his mom a few years back and hea talked about having a talk with his mom telling her how his life was going well as were his brother and sister. Basically they were all giving her permission to go, she had done a great job for them and they loved her and appreciated everything she had done for them. He said that she was able to talk with the family and have serious conversations and also have light conversations about their lives and she passed away that same night. He said it was almost like she had been fighting and suffering and struggling until the family gave her permission to go join their father. He told me it was a wonderful experience, (if there can be such a thing in the end). Anyway I know there is never an easy way to have the hard talks, sometimes all we can do is be straightup and start. When my mom passed away she was being treated for copd and a not too serious heart condition. Less than 24 hrs before she passed they discovered pulmonary fibrosis and she went very quickly, it was a sort of blessing in disquise because there wasn't a long drawn out painful suffering process. I'm very sorry if I may seem morbid or too personal but there really isn't much we can do to prepare ourselves for these great losses and sometimes we just have to let go and let GOD. Your dad is really lucky to have you there, caring and loving him. Isn't that all any of us want and need anyway. Take care of yourself along the way and remember you have a large community of friends here for your support and strength and Love... Donny Quote Link to comment Share on other sites More sharing options...
Caren Posted May 19, 2009 Author Share Posted May 19, 2009 Donny, You don't sound morbid at all. I am a very realistic person and I know that no matter how much I don't want my dad to die (I mean who would?) he is going to die and we need to get these things arranged so that I can carry out his final wishes to the best of my abilities. Usually I'm really up front and quite abrupt about these sort of things and I would be the one sounding quite morbid, but I feel that b/c my dad doesn't know (well in his heart and body he probably knows) or hasn't asked if they end is near then if I go in there and start talking about hospice and funerals then he's going to either think that I've given up hope, or he will know that when I stayed back to speak with the Oncologist alone this is what I was talking about. Quote Link to comment Share on other sites More sharing options...
RandyW Posted May 19, 2009 Share Posted May 19, 2009 Caren Yes its a hard conversation to initiate but it has to be done!! Get things in order now so they wont be so hard later on!!! the will and all the paperwork should be done before dad Passes away. Itis very hard to make decisions while you are grieving and emotional. I know because I did it before with my late wife..... Ask the questions. Just come out and talk with your dad about what is going on. Make the arrangements. its very hard to have to arrange a funeral while you are crying and upset about losing the person you love so very much. I have been there!! Planned a funeral at 7 o clock in the morning while half drunk!!! Not fun trust me!!!!!! Tell dad that you love him and that things are not as well as expected to be. Make sure he is not in any pain. Pain management should be Priority number one right now. keep him as comfortable as you can but keep him informed!! I know it hurts......... He is your Dad and you only get one Dad in Life!!!! Hang in there. You and Dad are in my thoughts and Prayers!! Quote Link to comment Share on other sites More sharing options...
jstdzy Posted May 19, 2009 Share Posted May 19, 2009 Hi Caren, Sorry about Dad. My Mom and I both actually filled out "living wills" together. My Mom had been very sick and I just said, "Mom with you being this sick I need to know what you would want me to do". She didn't bat an eye, just said go get some pens and lets get these filled out. Dad might surprise you too. As the others have said there is nothing wrong with asking the question of how much time. You need to know. Sending prayers to you and Dad. Dana Quote Link to comment Share on other sites More sharing options...
recce101 Posted May 19, 2009 Share Posted May 19, 2009 Caren, try something like this: Put your hand on his and say, "Dad, is there anything you'd like to talk about right now?" That might be all it takes if he's ready. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
fillise Posted May 19, 2009 Share Posted May 19, 2009 Caren, Given the circumstances I think you were wise to talk with the doctor so you could begin to prepare for what seems likely to come now. I agree with Ned, it is really only at the beginning that we caution folks about asking for a prognosis. As for what you are feeling, it's not right or wrong, it just is. I expect you will run the gamut over the next few months. As always, we will be here for you. ((((Caren)))) Susan Quote Link to comment Share on other sites More sharing options...
Barb73 Posted May 20, 2009 Share Posted May 20, 2009 Caren, With the same observations, I would have asked the questions you asked. It is important to know. Even though, as has been mentioned, no one can know precisely. Spending time doing what is needed both emotionally and materially in preparation is being realistic. Keeping you in my thoughts, Caren. Barbara Quote Link to comment Share on other sites More sharing options...
Caren Posted May 20, 2009 Author Share Posted May 20, 2009 I hate him being in the hospital. I hate not being able to take his medications and wash things through to him in the mornings and then making his breakfast and coffee. I hate this damn disease I know that he's in the best place for him, but this means that when he goes through to the other hospital (about 30 miles away) to have his radio-therapy that he will be taken in a hospital mini-bus and then basically dumped there with all the other patients needing the same treatments, until they are all ready to come back to the hospital again. I think I will speak with the Doctors and see if they can give him some mobile oxygen and we can take him through in the car. It's so hard for me to speak with anyone regarding his treatments b/c visiting hours run through school ending hour and that means that we don't get very long there b/c we have no-one to watch over the children for us. Trying to speak with a nurse or Doctor can take anywhere up to one hour before they get to you. The lack of communication really aggravates me, actually. Sorry for the little vent, but needed to let that out. Quote Link to comment Share on other sites More sharing options...
Caren Posted May 20, 2009 Author Share Posted May 20, 2009 Arghhhh.....of all the days! My son has to go to another hospital tomorrow to have 2 teeth removed. He has been on the waiting list since before Christmas and has suffered toothache on and off for a few months prior to that. So I was hoping that dad won't be sent for radio-therapy (at a different hospital) until Friday when I could go with him. They are sending him tomorrow and so I can't go, but they said that they will take him in an ambulance and he will have an escort with him at all times. So that gives me some peace of mind. I then received a phone call from the people who supply home oxygen to say that the nurse has requested them to bring the oxygen tomorrow!! I had to explain to them that while I hate to be a pain in the rear, I really can't put off this appointment for my son any longer and so could they please contact the nurse again and maybe arrange a different day. They were very good and said that they will call me later to let me know what they will be doing. I feel like I need to be split in a few different pieces right now. Oh and also, dad said that they are talking about discharging him on Friday if he isn't showing any adverse affects from tomorrow's radio-therapy session. This is great news, but it has rushed us into the surprise of redecorating and refurnishing my dad's bedroom for him. We planned on doing this over the weekend, but now my hubby has taken this evening off from College and we will be painting the room later. Quote Link to comment Share on other sites More sharing options...
fillise Posted May 20, 2009 Share Posted May 20, 2009 Hang in there Caren. It's times like these when you wish you could be cloned for all the places you need to be. It sounds like you prioritized and handled it. That's all you can do, so try not to beat yourself up for not being able to do more. I know, I know, easier said than done! Susan Quote Link to comment Share on other sites More sharing options...
SandraL Posted May 20, 2009 Share Posted May 20, 2009 Wow Karen! You have so much on your plate. And what a nice surprise for your dad on top of all that. Take a deep breath, this too shall pass! Sandra Quote Link to comment Share on other sites More sharing options...
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