How fast it all changed.

[ronandannette]

I'm overwhelmed with the support and that you all have continued to read and follow along. Thank you so much! I wish I could respond to each of you individually, but just simply don't have the capacity right now. I stayed home a little later this morning to try and get a few things done at home. It looks like a bomb hit it. Hard to imagine but my teenagers didn't miraculously turn into neat and tidy kids.

For the posters who have commented about including them - I have. They are fully aware of where things sit and what we are looking at. They also know that I will be asking more of them in terms of help around the house, more responsibility for their own needs - having had a stay at home mom for a number of years, they've grown accustomed to a level of "coddling" DH would say, I would call it support. In any case, they know that will be diminished. I also have felt very strongly about them not being sheltered from their father's diagnosis and what he is going through. When I was 18 my father was rushed to the hospital with an allergic reaction. I didn't know what was happening, just that he was in really bad shape. My mom wouldn't let me come and it was the next morning before I found out what was going on and if he had lived. That night is still so vivid and I never want my kids to go through something like that.

Ok, and now I'm off to the hospital again. As DH says - lets see what goodies are sent our way today.

I'm really proud of you for the bolded - I don't think there could be any better way to approach it than that. There have already been a few stories here about how damaging it is for kids to feel like they're isolated from the process. This is a time when you all need to pull together, including the kids and come-what-may, they'll be glad they did their part. Don't hesitate to tell them what you need from them and make sure they know they can do the same. Talk LOTS (and make them load the dishwasher and take out the garbage! )

 

[bellebud]

So happy they're thinking about sending him home, and how to 'fight' it. That's good news!

 

[Pea-n-Me]

I'm overwhelmed with the support and that you all have continued to read and follow along. Thank you so much! I wish I could respond to each of you individually, but just simply don't have the capacity right now. I stayed home a little later this morning to try and get a few things done at home. It looks like a bomb hit it. Hard to imagine but my teenagers didn't miraculously turn into neat and tidy kids.

For the posters who have commented about including them - I have. They are fully aware of where things sit and what we are looking at. They also know that I will be asking more of them in terms of help around the house, more responsibility for their own needs - having had a stay at home mom for a number of years, they've grown accustomed to a level of "coddling" DH would say, I would call it support. In any case, they know that will be diminished. I also have felt very strongly about them not being sheltered from their father's diagnosis and what he is going through. When I was 18 my father was rushed to the hospital with an allergic reaction. I didn't know what was happening, just that he was in really bad shape. My mom wouldn't let me come and it was the next morning before I found out what was going on and if he had lived. That night is still so vivid and I never want my kids to go through something like that.

Ok, and now I'm off to the hospital again. As DH says - lets see what goodies are sent our way today.

It's nice that your DH still has a flicker of humor going! That's great. (Not sure if you know, but I am a hospital nurse and take care of people with devastating diagnoses, so even that little bit of sarcasm is good, from my perspective!)

No worries about answering individually; I think I can probably speak for most of us in saying we're happy to know you're just reading. (And that maybe we can help in some small way by offering you support here.)

You sound like you're doing great, given your difficult situation. Really.

I also agree with ronandannette, that I'm so glad to hear that your kids are aware and involved. Give them some time to digest, and express/process their emotions. Then later, you can explain to them that one of the things they can do to help - that you need them to do, to help - is to help keep the house tidy because it makes it harder for you to help your husband/their Dad when the house is a mess! Get them to understand that if they could at least take care of things around the house (as best they can, including cleaning up after themselves, maybe throwing in a load of wash, taking care of the trash, etc.), that that will free you (and your mind) up a little bit to focus on the many other things you now need to do to help their Dad. You can explain to them that these things can be numerous and difficult, and that they might not even be aware you're doing them, like making phone calls, looking into insurances, making treatment decisions, booking appointments, paying bills, all that sort of thing that takes up a lot of energy and sometimes emotion at a time like this. If they could deal with the house, and their school things, that would be a little less that you have to worry about right now.

If an aunt, friend, grandmother, neighbor, or whoever, offers to help in that regard, too, consider taking them up on the offer (even though it's hard).

 

[mjkacmom]

I found this very helpful.

http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407

I’m a SAHM, and my kids don’t help much (because they are super busy and I’m not). I remember a week where I spent all of my waking hours at my mom’s (she lived 1/2 mike away, saw her everyday even before the cancer diagnosis). I was overwhelmed, and asked my kids (ages 12 - 18) to straighten out the house. When I got home that night, I found a sparkling clean house - kitchen, bathrooms, house was dusted, floors vacuumed and mopped. It meant so much. I’ve also had friends who have gotten cancer diagnosis, and people REALLY want to help. If someone asks if they can do anything, give them something to do. Drive your kids, make a meal, run errands... I’ve been a part of several meal chains, it made me feel better (and I’ve also been the recipient).

 

[fhtpdw20]

Another thing that helped us to cut down on family drama is an email after DH appointments. Most of his family lives out of our state. After his appointment/treatment, I would email all siblings at one time so all got the same information at the same time. No drama of you didn't tell me x by said y to another cause some days I did not know if I was coming or going (I work third shift). I would also add a little bit about his eating, sleeping habits, and general activity level. That way they were included in the journey and could see the progression of his health.

 

[Pea-n-Me]

Another thing that helped us to cut down on family drama is an email after DH appointments. Most of his family lives out of our state. After his appointment/treatment, I would email all siblings at one time so all got the same information at the same time. No drama of you didn't tell me x by said y to another cause some days I did not know if I was coming or going (I work third shift). I would also add a little bit about his eating, sleeping habits, and general activity level. That way they were included in the journey and could see the progression of his health.

Yes. Today, too, there is CaringBridge:

https://www.caringbridge.org/how-it-works/

 

[gemini2727]

Op, I really feel for you. It's so true how one day can change everything you've known.
I know it's different for everyone, but I just wanted to share that my father was diagnosed with a very aggressive cancer, one with a terrible prognosis, yet he is still here, surprisingly healthy, four years later. I've learned you really never know what tomorrow will bring, good or bad, and there is always a reason to have hope. Wishing all the best to your husband and all of you.

 

[excited family]

Unfortunately I know what you are going through. Another Canadian whose life has blown up in the past 3 weeks. We are waiting for my husband's biopsy results but it looks like he probably has stage 4 lung cancer which has spread to his liver. The difference is that he seems reasonably healthy besides having difficulty breathing and talking. He is still working which makes things seem surreal. I alternate between everything will be ok and what the heck am I going to do.

Like you, we have told our kids everything and prepared them for any treatment. We have not suggested that this could end badly fast. Waiting to get the results before that. I just keep asking myself why. He has absolutely no risk factors for lung cancer and no history of cancer in his family. I think that asking why distracts me from thinking about what will happen.

Since you posted it has in a strange way been supportive for me. I am not the only one going through this. If you can handle this so bravely then so can I. So thank you and I hope that you can feel the support which I have been sending you. I hope this works out as well as can be expected for both of us.

 

[Bella Paige]

My heart is with you and your husband Rodeo. I recently lost my mom to cancer and two years ago my brother in law to advanced pancreatic cancer and I have one bit of advice - no matter how much you love his doctors please consider getting a second opinion. Not because you don't trust the initial diagnosis, but to confirm it and the plan of treatment. Chances are the two opinions will agree but knowing that you made certain that you were doing the very best thing for you husband and his health. I know that my mom initially was concerned that her original doctor would be offended that she went elsewhere for confirmation but we were assured that any doctor truly concerned for the health and welfare of his/her patient would completely understand why one would need a second opinion about something so very important.
I will keep you in my thoughts and prayers.

 

[Mokat76]

Unfortunately I know what you are going through. Another Canadian whose life has blown up in the past 3 weeks. We are waiting for my husband's biopsy results but it looks like he probably has stage 4 lung cancer which has spread to his liver. The difference is that he seems reasonably healthy besides having difficulty breathing and talking. He is still working which makes things seem surreal. I alternate between everything will be ok and what the heck am I going to do.

Like you, we have told our kids everything and prepared them for any treatment. We have not suggested that this could end badly fast. Waiting to get the results before that. I just keep asking myself why. He has absolutely no risk factors for lung cancer and no history of cancer in his family. I think that asking why distracts me from thinking about what will happen.

Since you posted it has in a strange way been supportive for me. I am not the only one going through this. If you can handle this so bravely then so can I. So thank you and I hope that you can feel the support which I have been sending you. I hope this works out as well as can be expected for both of us.

Oh, no! What a terrible thing to have hit you in the face. And how odd-in a good way-you found this thread at this time. I pray for your family, too, as you navigate this. So many people are affected by this terrible disease. It sucks.

 

[sk!mom]

First, I woke up thinking of you this morning and said a prayer. I'm sure God knows who Rodeo is.

I found this very helpful.

http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407

I’m a SAHM, and my kids don’t help much (because they are super busy and I’m not). I remember a week where I spent all of my waking hours at my mom’s (she lived 1/2 mike away, saw her everyday even before the cancer diagnosis). I was overwhelmed, and asked my kids (ages 12 - 18) to straighten out the house. When I got home that night, I found a sparkling clean house - kitchen, bathrooms, house was dusted, floors vacuumed and mopped. It meant so much. I’ve also had friends who have gotten cancer diagnosis, and people REALLY want to help. If someone asks if they can do anything, give them something to do. Drive your kids, make a meal, run errands... I’ve been a part of several meal chains, it made me feel better (and I’ve also been the recipient).

Yes, Rodeo, please let those close to you pitch in. When DH was in treatment 6 years ago, it was hard, at first, to accept help because we were so used to being the ones helping. But as time went on the meals, carpool, lawn mowing and on and on made a huge difference and really strengthened some relationships to this day.

Another thing that helped us to cut down on family drama is an email after DH appointments. Most of his family lives out of our state. After his appointment/treatment, I would email all siblings at one time so all got the same information at the same time. No drama of you didn't tell me x by said y to another cause some days I did not know if I was coming or going (I work third shift). I would also add a little bit about his eating, sleeping habits, and general activity level. That way they were included in the journey and could see the progression of his health.

I agree with this to. Between my family, DH's sister, and our small circle of friends and large circle of colleagues and acquaintances I simply could not keep up with individual updates. I was hanging by a thread and run ragged. I started group texts for those closest who would receive all the details and then used FB. I wasn't sure about that at first but I keep it to only people I truly know so it worked well for updating our larger circle.

Unfortunately I know what you are going through. Another Canadian whose life has blown up in the past 3 weeks. We are waiting for my husband's biopsy results but it looks like he probably has stage 4 lung cancer which has spread to his liver. The difference is that he seems reasonably healthy besides having difficulty breathing and talking. He is still working which makes things seem surreal. I alternate between everything will be ok and what the heck am I going to do.

Like you, we have told our kids everything and prepared them for any treatment. We have not suggested that this could end badly fast. Waiting to get the results before that. I just keep asking myself why. He has absolutely no risk factors for lung cancer and no history of cancer in his family. I think that asking why distracts me from thinking about what will happen.

Since you posted it has in a strange way been supportive for me. I am not the only one going through this. If you can handle this so bravely then so can I. So thank you and I hope that you can feel the support which I have been sending you. I hope this works out as well as can be expected for both of us.

I am so sorry that you are also on this path. Cancer really sucks. Prayers for your family, as well.

 

[Runnergal]

I am very sorry to hear you are going through this. I know how you are feeling right now-my dh has been dealing with cancer for almost 2 years. It is so overwhelming at first and really feels like your world has been turned upside down. I am loving all the support you are getting from everyone. This really is a wonderful group. Not sure if anyone suggested this, but I recommend taking another person with you to appointments-a family member or close friend. It is helpful to have another set of ears when you are receiving so much information. You will put together a plan in the coming days and everything will become a little more manageable. And take care of yourself. It will be ok. It will. Hugs.

 

[lisaviolet]

I'm so very sorry to hear Rodeo. To you, excited family and Runnergal and anyone else facing such difficult times .

Another thing that helped us to cut down on family drama is an email after DH appointments. Most of his family lives out of our state. After his appointment/treatment, I would email all siblings at one time so all got the same information at the same time. No drama of you didn't tell me x by said y to another cause some days I did not know if I was coming or going (I work third shift). I would also add a little bit about his eating, sleeping habits, and general activity level. That way they were included in the journey and could see the progression of his health.

This is great advice. I did this with my family. And it helped at the time and when there were some comments after the fact (there is always one person in a family). Others could chime in "you were told" for me. It really helped take the load off. As did suggesting some loved ones talk to another secondary person for further information. As it can be draining to continue update after update over time and be a caregiver.

I've dealt with the system in Ontario for at home care/cancer so feel free to PM if I can help you meander through anything, at any time Rodeo. I want to add that the care we had at home - and at the hospital - was exceptional.

 

[rodeo65]

Unfortunately I know what you are going through. Another Canadian whose life has blown up in the past 3 weeks. We are waiting for my husband's biopsy results but it looks like he probably has stage 4 lung cancer which has spread to his liver. The difference is that he seems reasonably healthy besides having difficulty breathing and talking. He is still working which makes things seem surreal. I alternate between everything will be ok and what the heck am I going to do.

Like you, we have told our kids everything and prepared them for any treatment. We have not suggested that this could end badly fast. Waiting to get the results before that. I just keep asking myself why. He has absolutely no risk factors for lung cancer and no history of cancer in his family. I think that asking why distracts me from thinking about what will happen.

Since you posted it has in a strange way been supportive for me. I am not the only one going through this. If you can handle this so bravely then so can I. So thank you and I hope that you can feel the support which I have been sending you. I hope this works out as well as can be expected for both of us.

This gave me chills, excited family! In reading your post it does feel like we're living parallel lives and I'm so glad you're drawing support from everyone who have been so caring and continue to post here. I'm here for you too as we navigate these early days.

To those who have commented about accepting help...that is one of the things I'm most proud of. This polite "no, no I'm fine" Canadian has accepted help from night one. I just decided that I wasn't going to be prideful and try to handle it alone. The first night at the hospital, we had both cars there and when friends asked if there was anything I needed, I asked if they could take his home. They dropped their plans for the night and drove the 1/2 hour to do so.

Wednesday of this week my brother asked if I needed him to come. He lives in Boston with a young family. I asked if he was sure he could take the time away and he said "yup." So I said 'yes, please come.' He booked a flight out the next morning, managing to make it out ahead of the storm. He has been with me for every doctor visit, driven my daughter to work, renewed DH's license plate since he didn't get to it last month when he felt so lousy, visited with him when I couldn't be there tonight. Tomorrow he is helping me move DH's computers up to the dining room from his office downstairs. That is where his hospital bed will go when he comes home and he has asked if I could set them up there. I honestly couldn't have managed the past couple of days without him! He says he was happy to be here. So yes, you're all right. Being able to accept help is massively important.

DH got a new doctor tonight. He says she is much better at communicating than the last one. The doctors rotate in and out on a weekly shift. It's a strange system but in this case I'm glad for the change. She named which cancer it is but he forgot, so I'll have to wait until tomorrow for that.

 

[SirDuff]

This made me so sad! I'm sure they thought they were protecting you, though. I think much of the thinking is different today - hopefully.

My parents most definitely thought that they were doing the right thing. And, in their defense, it wasn't that they left us in the dark - they just didn't give me as much detail as I wanted (I ended up an epidemologist - so the "research" came naturally to me).

Actually, for the OP - let your kids (to some extent) guide you. My brother and I were very different. I, as noted, craved the details. My brother, other hand, was happiest with minimal details. Not suggesting letting either ignore things or be intrusive, but give them some leeway.

 

[leebee]

Rodeo65, I'm glad your kids are in the know and that your brother is there to help you through this beginning time. As someone said, after a bit you'll have a "new norm," so to speak. DH had a medical emergency of his own last winter- surgery, massive local and systemic infection, etc... not on the scale of your situation, but terrifying and dangerous. We lived 4 months of crazy-world, but looking back on it I now realize that after the first couple of weeks, we'd adjusted to a new norm. NOT an acceptable lifestyle, but at some point you are able to catch your breath again, get your feet under you, focus again, and move through the day without feeling like you are drowning- and while it doesn't make things right, it makes them easier to manage.

My best friend had pancreatic cancer when we were in our 30s. During her battle and treatments, there were about a zillion doctors: Oncologists, medication manager, pain specialist, radiologists, surgeons, social worker, psychologist... on and on and on. The BEST thing that happened for her was that her primary care doctor stayed involved. As the doc said, there wasn't anything she could do, medically, to help my friend; that was out of her realm and in the hands of the specialists. HOWEVER, this doctor became our touchpoint. If we had questions about a medication, treatment, symptom, she was there. When we had confusing medical discussions or lab reports we didn't understand, she made the time to go over things with us. When we had medical crises at 2am, we could call this woman and she moved heaven and earth to get my friend the medical attention she needed, right then. If you can keep your DH's primary care doc involved to some extent, so you know you have someone to call about whatever, whenever... it's just such a relief to know there's SOMEONE with knowledge who you can trust, call, etc., to back you up and give you direction when you really need it most.

Keep accepting help from friends. Last year I learned to accept help, and also learned how kind people are. Complete strangers were supportive. Shopping at Trader Joe's one day, I picked up some little treat at the cashier's and said "for my husband; he's been in the hospital for over a week and he needs a treat." The cashier put together a collection of treats from his station and the one next to his and said "Tell him we hope he gets better soon." It wasn't a lot- a few candy bars and a couple of small bags of crunchy things- but to me it was huge, and his kindness was overwhelming. During the first few dark weeks, when we weren't sure if DH would keep his leg or his life, I think I survived on the kindness of friends and strangers. Lean on people... we are basically good, and like to help out. (and big hugs for your brother, who is being everything a sibling should be!!)

 

[Disney_Alli]

I could very nearly have written this exact post in December about my brother-in-law. My husband and I were enjoying a lovely trip in WDW with my family when he got a call from his parents: his brother had been experiencing back pain on and off for months and chiro and massage weren't helping. Suddenly he woke up one morning and couldn't move his legs. He was taken to hospital by ambulance and then transferred to a larger hospital also by ambulance for further assessment and treatment. They found tumors in his pelvis and on his spine and immediately operated and removed basically two of his vertebra. Want the fun kicker? He was in Ireland on a NET trip and had been there for the last two years so despite his entire family being in Alberta his only current health coverage is in Ireland and all treatment would be in Ireland. His parent flew out immediately not expecting to bring him home, or to bring him home only for palliative care.

He is still in the hospital in Ireland and after 6 chemo rounds his latest scans are looking good, he's not out of the woods yet but he's pretty much only using crutches now - a huge step up from the wheelchair and then the frame he was using - and he is getting stronger every day. He's reacted very well to the chemo and has had very few side effects from it. Even if your worst fears are realized know that it's not the end.

It's been a struggle for the family having him in Ireland, his parents run a large cattle ranch and my mother-in-law has basically moved to Ireland for the foreseeable future to aid her second eldest through his treatment. His dad is home running the ranch with the second youngest while their youngest is still in college. We visited at the end of January and celebrated Ted's 27th birthday a day early. Life really can change at any moment. Their whole community came together and held a benefit that raised over $68,000 to help the family out with all the traveling expenses ensuring all the boys got out there to visit with their brother. Embrace any help that's offered and know that we're here rooting for you both as well.

 

[lisaviolet]

To those who have commented about accepting help...that is one of the things I'm most proud of. This polite "no, no I'm fine" Canadian has accepted help from night one. I just decided that I wasn't going to be prideful and try to handle it alone. The first night at the hospital, we had both cars there and when friends asked if there was anything I needed, I asked if they could take his home. They dropped their plans for the night and drove the 1/2 hour to do so.

Wednesday of this week my brother asked if I needed him to come. He lives in Boston with a young family. I asked if he was sure he could take the time away and he said "yup." So I said 'yes, please come.' He booked a flight out the next morning, managing to make it out ahead of the storm. He has been with me for every doctor visit, driven my daughter to work, renewed DH's license plate since he didn't get to it last month when he felt so lousy, visited with him when I couldn't be there tonight. Tomorrow he is helping me move DH's computers up to the dining room from his office downstairs. That is where his hospital bed will go when he comes home and he has asked if I could set them up there. I honestly couldn't have managed the past couple of days without him! He says he was happy to be here. So yes, you're all right. Being able to accept help is massively important.

How lovely Rodeo.

 

[Mokat76]

Rodeo65, thinking of you today and hoping all is going as well as can be hoped for. All my prayers and positive thoughts are still headed your way.

 

[Minnesota!]

Thinking of you!