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August 7, 2012 at 2:48 am #20530dkmcParticipant
So I am enjoying a wonderful day at Va. Beach(hat, sunscreen) with my friends & I was telling them that I wanted to plan another big trip(we love to travel) with Don. But it would make money a bit tight right now & later would be better. But he is in remission NOW. So I told Don hey we can do this, but surprisingly he said you know what it is not that important…we can go some place close to home(our area is beautiful) & have just as much fun. Which lead to this discussion…If given a melanoma stage 4 cancer diagnosis what would you do??? Quit your job & join the peace core??? But no Don really just wants “normal”. To be working, be home, plan for the future…and it got me wondering how have others responded. Sometimes you are just trying to stay alive but if relatively healthy period ??? I admit we have had some kinda weird reactions…like after my father died & Don got to word he would need a 3rd neck dissection that summer…we did the perfectly sane thing of gutting our kitchen & then 2 months later went on a wonderful trip to Glacier/Yellowstone/Tetons 3 weeks post op. Came home & a month later stage 4 diagnosis. I think the frantic activity helped us deal with it. Now this summer very calm & seeming to need family & normality. Is this a weird question? I must be thinking about life & death. There really probably is no real answer & must be very personal.
Thanks, KarenAugust 7, 2012 at 11:07 am #55779Catherine PooleKeymaster
I think it certainly feels safer to want normal when your life has all but been normal. You folks must have a lot of mental stamina to gut your kitchen during all of this. I know for myself, staying close to home just made me feel more secure while facing the unknown. The only upside to all of this is we realize and prioritize what is important in life. I hope you two enjoy the tranquility.August 7, 2012 at 11:48 am #55780jmmmParticipant I’d love to hear other responses…we’re in a similar situation (hopefully…we get scan results later today). My husband is still trying to figure out what to do with himself. He’s been “stable” since his last brain surgery at the end of November. He stopped working then and really isn’t able to go back to his engineering job (loss of some cognitive skills and side effects of Zelboraf don’t allow him to do what he did). He’s done a few “bucket list” activities…hot air balloon ride, drive-in movie, etc., but can’t figure out what to do next. Neither can I. I quit my job to care for him, but he doesn’t need care now. If we had a crystal ball and knew how much time he had, it would be so much easier:). We’re raising 3 young boys and trying to squeeze in all the memories we can with them. I think we’re both scared about going back to work, committing to anything more than a week or so in the future, planning (or even considering) something in “the future”, because we know at any moment, things can change. We have some savings that we could use for some big trips or something, but if he’s fortunate to be alive for months or even years, we’ll need the money to live on. Such difficult decisions….I’m hoping we’re not the only ones.August 8, 2012 at 7:18 pm #55781DadZGirlParticipant Living in limbo… that is what it seems we are doing at our house. My Dad is the patient and my husband and I are caring for him as a team. Thank God we have each other. My Dad says he has had a great life and does not have a bucket list. Mostly he just wants to “feel normal” like he did before Melanoma. He wants to be able to do things he used to be able to do that were “normal” like sailing his boat and working on his house. He has had very little energy since his diagnosis and we don’t know if it will ever get back to where he used to be. So we enjoy each day one at a time doing normal things like having dinner together and watching the Olympics. Each day is a gift. Sometimes I do wonder if we’re all just waiting for the next bit of news. Dad had good scan results yesterday (we expected worse) so now the three of us are kind of reeling on good news. 3 months until the next scan so I hope we can do some things like sail a boat, we’ll see. I’m sure as a patient you would just want your life back, your whole life, not just the in-between scans part. It’s such a roller coaster ride all the time. It would be nice if no one had to deal with this.August 10, 2012 at 9:55 pm #55782bettinParticipant Peter also didn’t want to travel (we travelled already a lot for treatments) but just be at home. I had a moment of ‘we always wanted to do this!!’ but it somehow didn’t seem to matter to him anymore. At some point I got suspicious that it was actually rather my bucket list than his as I felt that there were so many things we had planned but never got around to do…I now think that when you have to live with such a diagnosis you begin to realize how good your ‘normal’ life actually is and appreciate it much much more. We had some wonderful moments that will stay with me forever and I only hope I’ll be able to retain some of that appreciation for the little things in life- as in the end that seems to be what matters.August 12, 2012 at 5:24 am #55783janibraskasParticipant Today we had such a good day with all the kids and extended family, it felt like pre cancer days. Then reality hits my 39 year old husband is sick. The reality of our life. Our life has changed to next doctor appointments, and results of those. To wondering what new obstacle, we will encounter. Today was a leaky drain and my husband noticing his leg swelling. He was hoping to be able to go back to work soon. My heart breaks for him. He never had a sick day and now he cant wrestle with his four year old son. We too go in for results to his first scans on Wednesday. Requesting prayers that they will come back clear or the strenghth to handle what lies ahead. The unknown is the hardest., and reality that our life is forever changed. I eel for you all when I read your posts, I think of you often and if others are dealing with this we can too. Hugs to.you.August 12, 2012 at 11:27 am #55784Catherine PooleKeymaster We will certainly keep you in our thoughts and prayers.August 15, 2012 at 3:11 pm #55785CeceliaParticipant I have to agree with what all of you are finding. Dong things and having things don’t seem to matter that much anymore; we wonder if that is the gift God gives with cancer. Now we model our life after our beautiful golden retriever and live in the moment as much as we possibly can. I have taken on all of the research and information handling so Margaret just doesn’t have to be in cancer-world more than absolutely necessary. I think her biggest issue is trying to find a sense of purpose bigger than herself. Meditation and prayer are the only answers we’ve found.
Has anyone heard of the Camino? I think we’re all on one, and my thoughts are with my fellow pilgrims.August 15, 2012 at 4:58 pm #55786AnonymousGuest
We would like to go back to “normal’ too. Sometimes I ache for it.
Three weeks ago Rachel, our son, Matt, his main squeeze Jessica and myself went to North Carolina to spend an absolutely wonderful week with one of my brother and sister in laws. We went out to eat, cooked at home, hiked, played golf and spent a day with a rented pontoon boat on a spectacular lake. We towed Rachel around on an innertube behind the boat at high speed, twisting and turning, bouncing and splashing. She had a blast. We had whole days when we didn’t think or talk about her cancer. I actually started to live “in the day” rather than “the moment”, enjoying what was right there in front of me rather than ruminating and dreading the inevitable future. It was actually better than the old “normal”.
So this vacation was indeed a gift from God as I see it, with some hope, and experience to back it up, as to enjoying life in a different way, especially after Rachel finally leaves through that door we must all eventually go through.
And yes, there are some things that just don’t matter any more, with emphasis on the material “things” and looking back, some of the dumb stuff we used to argue about (and, actually, still do, if the truth be knowen).
But there has been growth too, especially spiritually, which is ever lasting after the material stuff has fallen to dust.
Yeah, deep down inside I know and accept that this disease has, in some ways, been a gift from God. It has changed our lives and spirits completely and forever but not without a whole lot of pain and sorrow in the process. Maybe that’s the way it’s suppose to be, no pain, no gain. I just wish there was an easier way for us here to achieve such growth.
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