There are many people who have asked me what they can do or say that is helpful. I’ve perused the web for other intelligent input on the subject of what to say or not to say to someone with a terminal cancer diagnosis. I now have a few weeks of experience under my belt as well.
There are a many articles, blogs, and Yahoo! Answers on this subject. I find that I, myself, have been guilty of not knowing what to say or saying the wrong things. It seems that something about cancer affects our filters/manners/politeness, and in an effort to say the right thing we say exactly the most awkward, wrong thing.
I wanted to share what we’ve found most poignant or helpful in all of this mess we’re facing. You’ll see some of these on both sides of the say/don’t say equation depending on the article/blog/answer you read. This is where we come down on things.
I don’t know what to say…
Frankly, many times Francis and I don’t know what to say to each other, our families, our friends, our colleagues, etc. Being honest about not knowing isn’t awkward at all.
This really sucks…
We agree, and it’s always nice to know others hate this as much as we do.
Is now a good time to talk about it?…
The strange thing about where we find ourselves is that each day is infected by cancer. We can’t take a vacation from it. It’s like a houseguest that we can’t get rid of and that insists on joining us for every outing. Sometimes we want to talk about it and sometimes we want to ignore it all together, try our hardest to reach back to what normal was and feel that way again – even if for just a moment.
If you have questions, by all means ask, but understand (and take clues from how much detail we disclose in our responses) we may not feel like sharing much or we may be in the mood for a mind dump. When in doubt, ask if it’s a good time.
Don’t pity us, and don’t ignore us…
As I’m sure you can imagine, we don’t need to hear how sorry people are for us because we hate this too (see “This really sucks” above). Having people tell us, “I’m so sorry” leaves me in an awkward position of not knowing how to reply to the statement.
The strange thing about cancer is that every diagnosis, every type, every individual with the diagnosis is unique. It doesn’t affect two people the same and no two people react to the diagnosis and/or treatment the same. Then you throw in the family and close friends and the experience for each member of the family and friend is equally unique.
As a result of this individuality in cancer, it’s a disease that is painfully isolating. It isolates you from family and friends because of recovery from surgeries and treatments that require quiet and rest and avoidance of germs. It has isolated us from each other because as much as we are together in all of this, only Francis knows what it feels like and only I understand what it is to be his caregiver and the one facing a future without my best friend and the father of our children.
Please don’t ignore us because you don’t want to discuss the details or because you don’t know what to say. We appreciate the effort to reach out to us or keep in touch even if we don’t always or ever respond. Each of those contacts remains a tether to a world where things aren’t as painful, sad, or dark as our world sometimes feels.
Let me know how I can help…
The outpouring of offers of help from family and friends has overwhelmed us. When we see the silver lining of a terminal cancer diagnosis it is often a renewal of our sense of hope in humanity.
I promise that if there is something that we need we will ask. Please understand that if we don’t ask we aren’t blowing you off. Sometimes it’s exhausting keeping everything I have to do to care for Francis and our children straight. Having to think of something I or we may need immediately sends my sleep-deprived and emotionally drained brain into the blankest of blank modes.
I will be honest that I feel guilty about not being able to let people help do more. I know family and friends feel guilty about not being able to help us more. Let’s agree to stop that guilt and you can just know we’ll ask and we can just know you’ll accept when we come across something specific to do. Deal?
If you would like to do something specific, see this guest post on the blog for sharing memories about Francis from our dear friends Sarah and Mindelynn or this food delivery planning page organized by our dear friend Rachel.
I’m still me even though the cancer will take me/my spouse…please don’t let it take you from me/us…
We’ve needed both time and space to deal with the bad news about Francis’s cancer together as a couple and a family. It’s what I have asked for here in the blog and something that technology allows us to maintain by silencing phones and unplugging laptops for a bit.
We still feel a great need to pull the plug and pretend to be hermits now that we’re home and reconnecting with friends. After all, Francis still has some recovery from the surgery alone, and the side effects of late stage colon cancer are new each day.
Francis has frequently commented about the pain of fading away and things related to that. I can identify only through the collective “we” and the current “I” that I know are fading away as well. Watching your spouse and the “we/I” I love fade away is painful enough, but then the things that make us who we are as individuals and who we are as a couple are also being lost. I know I can’t adequately describe Francis’s perspective and pain related to this concept, but he’s hopeful he can tackle this in a future post of his own as he works now to wrap his head around it.
To say that we need to hear from and visit with family and friends is an understatement even in the most hermitic of moments. It keeps us sane. It allows us to focus on the good in life, provides us a break from each other (yes, I still can get on Francis’s nerves and he would admit that he can be a difficult patient), and gives us the luxury of a laugh when we desperately need some comic relief (just not too hard or Francis feels like he will bust his gut – literally).
We have many requests for visits or phone calls from locals and out-of-towners. The best way to be in touch with us is to send an email to both of us or through the blog and let us know when or how (phone/in person) you’d like to visit. Include your phone number if you just want to chat. We have a long list of calls/emails/visits to return/reply to/schedule. We will get around to it, but we’re still primarily focused on giving Francis time to rest as his energy level fluctuates throughout the day.
Let me know when I can take the kids/watch the kids/come play with the kids…
This is the hardest for us. We probably worry more about how all of this is impacting them now and how it will affect the course of their lives in the future. It’s what keeps me up at night and makes me most frightened about in a future without their father.
We were fortunate to have a brief meeting with a psychologist at MD Anderson where we could discuss the children and how to do right by them. One of her many suggestions was about caretakers and strangers in and out of their lives in the coming weeks and months. She encouraged us to keep caregivers to a very small number (3-4) and keep to their current routines as much as possible. These things help them both feel loved and secure in a world that will be full of change.
On this I am inclined to be extremely protective. It isn’t because I don’t want people to watch them or play with them but because I want to protect them. I’m sure you can understand this.
In all of my protectiveness of them, I also realize that what keeps Francis and me anchored to joy and hope for the future is the sound of Couper’s little bare feet running across the hardwood floors between his room and ours, and the wrinkled-nose, five-toothed smile of Riley when she wakes from her naps or turns around and catches us watching her. Having them with us protects Francis and me probably as much as we protect them.
“Life is unchartered territory. It reveals its story one moment at a time.” – Leo Buscaglia
Our dear friend LeAnne has made us guest contributors to this blog so that we can invite you to participate in an exciting project. We (Mindelynn and Sarah) have both been friends with LeAnne for a long time, and were thrilled when Francis came into her life and swept her off her feet (we claim him as a dear friend, too). We cherish the Gibbs family immensely and, like many of you, have been humbled and inspired by the tremendous strength, courage, and grace with which they have faced this struggle, even through heartache and disappointment.
So as their community of friends and loved ones, we want to invite you to help us honor them. They say “a picture is worth a thousand words” and “the shortest pencil is longer than the longest memory.” If that is true, then documenting and preserving memories is one of the best things we can do!
To celebrate and encourage Francis and LeAnne during the difficult time, and to collect memories that Couper and Riley, future grandchildren, and generations to follow will be able to look back on and cherish, we are asking family, friends, colleagues, mentors, professors, fellow Gators, or anyone else who has some great memories of times spent with Francis to email them to firstname.lastname@example.org. These precious moments, funny stories, and cherished reflections will be put into various media that Francis, LeAnne, and their chidlren can enjoy as a family and that will be a wonderful legacy for our dear friend.
So dig out your yearbooks, go through old photos, rewind old VHS tapes, dust off old letters, pen heartfelt greetings, scrounge for old golf scorecards and ticket stubs from memorable Gator games, etc., and dive back into days past to share your warm, funny, and heartfelt memories. If there are stories that go along with the pictures, souvenirs, etc., please write them down. The more you can put the memories in context, the sweeter the recollections will be!
If there are things you have that cannot be converted to electronic form and emailed, please let us know by sending an email to the address provided above. We will figure out what to do from there.
Thank you so much for helping us bless the Gibbs family with the gift of your treaures!
Sarah and Mindelynn
“Love each other with genuine affection, and take delight in honoring each other.” (Romans 12:10, NLT)
The Gibbs family is now back home in Tallahassee. Here’s the latest information on how things have gone over the past two weeks.
The recovery in the hospital seemed to go pretty well, with a few minor exceptions. Francis will tell you that he thinks he was kicked out of the hospital a little too soon (just a week after surgery). I have to agree with him based on our experience with the smaller procedure in Jacksonville last May. Selfishly I am happy about the speedy release because I love having him home with all of us. All that aside, he’s done amazingly well at home for having undergone major abdominal surgery just a little over two weeks ago.
Toward the end of Francis’s hospitalization, there was a place along his incision that began showing signs of infection. The doctor decided that they should remove about six staples (he has two dozen, give or take) and allow the incision to reopen and heal from the inside-out. This open incision site must be packed with wet-to-dry dressing, twice per day.
As I mentioned before, a G-tube (gastrostomy tube) was placed in his stomach to replace the NG tube that was in his nose leading up to surgery. A painful reality of the G-tube is that the opening in the stomach and abdomen along the tube creates a path for stomach acid to seep out and contact unprotected skin.
This potential for leakage seems to be exacerbated by the fact that Francis continues to suffer from distention of his abdomen because of the cancer. We have to apply a cream to the site to try and protect his skin from the acid, and change the dressing at least twice per day depending on the irritation at the tube insertion site.
Francis is “fed” his TPN nutrition for 12 hours overnight. He has to have the IV bag of fluid mixed with fats, vitamins, and medication nightly. In addition, he must have the dressing on his PICC line and the caps on the lumens (see PICC line link) changed weekly. I had to get special education and a sign off from a special IV team nurse at MD Anderson to be able to manage this by myself at home. We also have a home healthcare pharmacy that is providing the TPN and weekly nursing support.
As I’m sure you can imagine, the news we got about the severity of the cancer and the heap of education we had to do in the weeks following has been overwhelming. We all craved the familiarity and comforts of home, while we feared the actual process of getting home. We were worried about the pain the change in pressure of an airplane ride would cause; we were also worried about the pain and discomfort caused by bumps and shakes of a road trip.
Ultimately, the call was up to Francis and he preferred the car to the plane. The pain caused by the pressure change from the flight to Houston wasn’t an experience he cared to repeat. We decided that following a check-up with Francis’s surgeon one week after his discharge we would start our journey back home in our car, assuming the surgeon gave us the green light.
The lovely rainy weather here in Tallahassee gave us an added logistical wrinkle – getting the rest of the family home by plane. The original plan was to have Francis’s dad and stepmom fly back to Houston on Tuesday morning, and his dad would accompany us on the drive back while Ann and my mom would travel by plane with our kids.
Unfortunately, the plane trip to Houston was delayed a day for weather. So, Francis and I decided that rather than delay the trip the extra day we should get on the road, just the two of us and have everyone else fly back by plane on Wednesday.
Francis and I arrived at MD Anderson for his follow up appointment on Tuesday morning. The surgeon told us that Francis was fine to return home, encouraging us to leave his staples in place for at least another week or two.
We returned home, I grabbed some lunch, and my mom and I packed the car to the gills with take-home nursing supplies and as much luggage from the trip as possible. We had to stop at MD Anderson’s pharmacy to pick up a few prescriptions before leaving town.
Francis and I began our drive together just before rush hour started on Tuesday afternoon. The ride was pretty uncomfortable for Francis and it had already been a long day of walking and examination. We made it to Baton Rouge, Louisiana, around 9:00 p.m. on Tuesday evening. We decided we would spend the night there and take our time getting back on the road the next day.
We departed Baton Rouge just after 11:00 a.m. on Wednesday and were fortunate to have a smooth trip along I-10, arriving in Tallahassee at 7:00 p.m. on Wednesday. That drive was much easier for Francis; he was even able to sleep comfortably for a couple of hours along the way. Since our return, we’ve all been recovering, getting back on Eastern time, and trying to get ourselves settled and organized.
Many people have been in touch with us now that we’re back home. We look forward to catching up with so many friends and family. Please bear with us as we work through Francis’s recovery from surgery and the new reality of our lives for the coming weeks and months. As I’ve said before, we are very appreciative of all of the messages, calls, etc.