jmoneypenny
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Jules,
All of us are hoping for the best for you and your dad and your whole family. We are all so familiar with your dad’s valiant struggle – I hope the transfusion helps him. We’re here for you.
-JoyceDear Patricia,
You’re absolutely right – there is no right way to go about this and no matter what we do, we go over it in our heads and regret what we did or what we didn’t do. I know this with my head but my heart gets caught up in “should haves” especially since my mother was so depressed and maybe she could have used a shoulder to cry on, instead of having to listen to me telling her it was all going to be all right. No use in regretting all this, I know! Just like there’s no use in your regretting showing your anguish to your husband. I know my mother got annoyed when a dear family friend cried in front of her but I can’t help feeling that I was a bit too strong and efficient-seeming in front of her. Oh, there I go again!!! I guess it’s just human to have these thoughts constantly playing over in your head. I know she loved me, just as your husband loved you, no matter how we acted at the end. It was probably not that important to them at that time, anyway. They were busy doing the business of dying, and we can never go there with them and understand completely what they were thinking. I remember thinking she was getting further and further away from us as she prepared to leave this world, so these mundane affairs probably didn’t have much impact on her.Thanks for your post – it helps me to exorcise some of my demons. I hope you can exorcise some of yours, too – my heart goes out to you.
-JoyceWonderful news! I’m so happy for you and your family!!! Best wishes for continued good results!!
-JoyceCdr,
Exactly!!! Go out and smash things – it may make you feel better for a while! I know I get the urge to break everything in sight, and it was especially bad right after my mother died — I just wished EVERYONE was dead!! Those strong hostile feelings are so surprising to someone who is pretty laid-back like me, but it gives me much better insight into the tantrums my 4 year old has!The person who has helped me the most is my best friend, who also hates people who “have all the answers” and try to fix things — some things just can’t be fixed. Her father died last year on Father’s Day, so she’s right there with me and we just rant and rave and cry together. It’s great to have an anger partner! And if people think you’re strange for acting out, well, that’s THEIR problem, right?
Maybe popping some bubble wrap would help??? Just thinking of ways to let off steam without getting arrested.
-Joyce
I’m so glad that you’re writing these feelings down for us – hopefully it helps YOU, but even if it doesn’t, it’s so helpful to those of us who have lost a loved one. My mother was very depressed about her diagnosis but never wanted to discuss it too much – after all, I’m still her daughter, and I know she spent most of her time worrying about me and my sister and she didn’t want to upset us. Although I’m supposedly all grown up at age 41 with a child of my own, she understood that I’m still just a baby – I was so attached to her – she was/is my best friend. So it helps to see things from the point of view of the patient, since we as survivors all wonder “what were they thinking?” and so many of us don’t have any clues and it torments us.
I know you are terribly worried about your son, so maybe the point of view of people like me can help you to understand him, too. Though he’s very young, I’m sure he would love to read your thoughts at a later date – so maybe you should continue with that journal, or write one just for him. You are putting up a courageous fight and I know he’s proud of you. He’ll be grateful for any letters/films you put aside for him so he can be close to you. Sorry to be morbid here.
It’s great that you patched things up with the pastor – it’s great that you’re mending fences, when so many people just turn bitter. I know you’re a pretty “together” person from what you’ve written, but even the most logical and rational person is thrown for a loop when confronted with a dread disease. I think it was way past time for you to have some heavy waterworks and cry your eyes out – you deserve it and you need it! You’ve probably already considered all this, but maybe a support group would help – though I think of this site as a support group, it may help to see people in person and share your thoughts. No one can go through this alone, and sometimes the people you love the most are the people you don’t want to confide in — I’m sure you can’t confide everything to your son!
Here’s hoping for all the best for you! Hugs and love going your way,
-Joyce
That is so true, Marions – though I still force myself to be in denial every day, otherwise I couldn’t cope. I keep saying “she’s not dead, she’s not dead” about my mother – but everyone has their coping mechanisms — just like you said, you have to get through one day at a time. A beautiful – and beautifully-written – post.
-JoyceDear Peter,
I’m just thrilled to hear of your success and continued well-being and I hope it keeps on like this for you until you’re at a ripe old age!!! Basically, ditto everything Marions said. People like you give us all hope.
-JoyceI totally understand that you’re holding onto hope right now, and you could be totally right – he could be getting pain from not moving around enough or sitting in the chair. Don’t let us get you down! No one knows the answers, we’re just fumbling in the dark. No need to apologize – I know the feeling of helplessness and how you desperately want to help your dad. Your love for him is admirable. Keep up the fight and we’ll be pulling for you.
-JoyceColleen,
Congrats to your husband for doing so well and actually going back to work! That’s wonderful news, very uplifting to hear when there is so much bad news going around. Best of luck for continued success !
-JoyceHello fathers daughter,
Like Jeff said, the pain could be from metastasized tumors somewhere else in the body, but it could just be from the liver – I’ve heard of “referred pain” where the pain is in the back and shoulder instead of the liver area – the nerve endings just send the pain there for some reason. It would be hard to know without MRIs or CAT scans.If your father’s too weak to go to the doctor, it’s positively INHUMANE that they won’t prescribe something without seeing him! That’s really infuriating. You may not want to hear this and HE may not want to, either, but I think hospice is your best bet. As I told my mother, hospice doesn’t mean you’re on the verge of death – it just means you refuse to get any chemo treatments. Hospice will prescribe any and all drugs that keep you comfortable, as their aim is to give you the best quality and most pain-free existence until the end. I am a great believer in hospice, as they also offer counseling and arrange for a hospital bed, oxygen, clergy, anything you need to be delivered to you. If you need meds for nausea, pain, anything – they usually find a way to get it for you. The wishes of the terminally ill and the wishes of their families should be listened to, and doctors just don’t get it sometimes.
I know hospice is a scary word and I had trouble getting my mother to accept it, but they even offer home care attendants to come in for a few hours a day and I thought they were marvelously compassionate and caring. My mother didn’t want to accept it, but I just told her that if she wasn’t having chemo and she was too weak to keep going to the oncologist and being forced to sit in a waiting room for hours, then hospice was the only way to get medical treatment and prescriptions. I guess the hospice care all depends on your area and not all of them are good, but my experience was wonderful — well, as wonderful as it can be under these circumstances.
As for the pain meds, I really don’t know of any that don’t make you sleepy. He may need to sleep a lot because of the cancer, also – my mother was very fatigued even without the morphine and hydrocodone she took, but she still sometimes felt awake and insomniac in the middle of the night, which the hospice people told me is a classic sign of late-stage cancer. Hospice explained so many things that the docs just didn’t have time for. Morphine makes you sleepy but it takes away the pain, and if the pain gets too bad, that’s all that matters at that point. I’m sure they would prescribe Megace, too, if you wished it.
I wish you the best of luck and my heart goes out to you and your family at this difficult time. Try giving your father some Prilosec OTC in the morning so he doesn’t feel heartburn or queasiness and then maybe try to give him a small amount of yogurt if you can – just small portions of something every now and then is probably all he can tolerate. Other people on this board have recommended medicinal marijuana for increasing appetite. If his stomach is swollen he probably doesn’t have much room for food and it makes him uncomfortable.
Again, all the best of luck and much love going your way,
JoyceGood for you! Hope it continues going well! By the way, hair loss isn’t a big factor with Gemzar like it is with some other chemos, I hear. There’s one amazing guy on this board, JeffG, who has had different chemo regimens for 5 years or so, and he just started losing his hair from Taxotere. So maybe you can keep your tresses.
JoyceThat’s hysterical! I have a 4 yr old girl myself and I don’t know what I”d do with a boy– though they all come with their own sets of problems, I know.
One good thing that comes from these life-changing events is that it gives us a much better perspective, doesn’t it? Worrying about a stain on the furniture or a fender-bender just doesn’t seem worth it! Then again, I would probably still worry if I had to give my daughter “the talk”!!
I remember not long after my mother’s diagnosis I was in the post office and the line was kinda long and people started getting real ugly and threatening the poor tellers and I just said, “Hey, we have to wait 20 minutes on line at the post office and some people are dying and in pain and half the world is starving and tortured and doesn’t have two cents to rub together. Get some perspective!!!! “
What you’re going through is a whole lot more important than a long line at the post office – that’s what I’m trying to say.
I’m glad you have a therapist and your son does too – you need every bit of support you can get!
JoyceHey Barb,
You must be some kind of wonderful person to have everyone doing such incredibly thoughtful things for you! It makes ME weepy just hearing about it! And of COURSE you’re young! I’m not too far behind you, so don’t say it’s old.My only tip for chemo is: make sure they give you some good anti-nausea prescription drugs. My mother had three or four prescriptions and some would work great right after chemo, some worked at other times, she just mixed and matched. You may be lucky and not get nausea, but when it hits it’s usually 2 days after treatment, because they give you anti-nausea stuff in your IV with the chemo and its effects last for a bit. And when my mother was nervous for her first chemo they put some kind of anti-anxiety drug into the mix (it may have been Ativan) – it calmed her immensely.
Good luck and let us know how it goes. You sound like you have had so much going on, it’s no wonder you feel overwhelmed.
Joyce
Oh Barb, what a horrible blow, and I do so feel for you and for your little guy! Right now you must be in shock and it’s understandable to be depressed. But don’t give up hope – there are many people on this board who have tried many different treatments – each individual responds differently, and you never know what might work for you.
Best of luck to you – you have your youth on your side too, you know, and that helps immensely in battling this disease.
Joyce
