I have received many responses to my first blog post about my husband’s cancer requesting more about what happened after his diagnosis and during treatment.
So here is Part 2: What Ensued After the Initial Shock Wore Off
My husband went deep into “Shock” mode. And I dug into “Get It Done” mode.
To be honest, I don’t really remember a lot about how my husband coped in those early days. He seemed to be in a total daze.
I was on auto-pilot with a major task at hand. And that task needed to be handled. NOW.
I do remember us telling the kids. They were all teens and young adults at this point. I think they all took it in stride. There were tears and lots of questions. But really, I think that after they knew that ultimately their dad was going to be ok, they were able to relax.
Teens are good at that.
So I started by making phone calls. Thankfully for us, having worked in Oncology in a large hospital system, I still kept in touch with a bunch of former coworkers and colleagues. As well we have a good friend who is a Doc who also helped with getting my husband some quick appointments.
I have to say that having worked in the medical field certainly paid off during this time. Having connections really IS that important.
I would tell anyone in a medical crisis and who needs attention-call anyone and everyone you know and use the Connection Card.
So, I started by making phone calls. Lots of phone calls. Trying to find out who would be the best doc in our area for my husband’s particular cancer.
I received several names and made appointments with three of them. One was out in the burbs near us and two were in downtown Chicago. Of course, we would see the best doctor for my husband but I did take into account the reality of the 18-mile drive into the city and the fact that we would have to pay for parking every single time we went down to the clinic. And those parking fees do add up!
Thankfully, we ended up getting an early appointment (many thanks to my nursing friends) to see the Lymphoma doc in our area and we liked him. More importantly, we liked his collaborative nurse A LOT.
This is an important point: You want to be able to communicate with your doctor’s nurse. Most docs have a nurse assigned to them that sees all of the patients with him/her. THAT is the person that you want to get to know. They are the ones who will return your phone calls; They are the ones who will tell you what type of mouthwash to buy; They are the ones who will look at the schedule and see if they can get you in to see the doctor a bit sooner; They are the ones (most of the time) who will be talking to the allied services to get you any additional assistance that you might need-think counseling, pharmacy, lab, etc.
Just quicker everything.
So, in addition to the above recommendations, I’ve put together a list of Do’s and Don’ts that, I know, helped my husband and myself along this health crisis/journey.
- Get to know your doctor’s Collaborative Nurse. In most clinics, there is the main nurse assigned to each doc. They’re like the doctors right hand. They can be of huge help to you and your loved one.
- Enable the help of friends and family who may have medical connections when looking for a doctor/ clinic.
- Let people help you and take care of you. Let a friend create a meal chain for people to drop off dinners, etc.
- By the same token, accept those gift cards for restaurants. They came in very handy and allowed our picky family members to choose what they want to eat. One less thing to think about as a caregiver.
- Let friends/neighbors clean your house or, if offered, let them hire a cleaning service. And, let them provide childcare and take over your carpool duty.
- Connect with loved ones via email or a website like Caring Bridge.com. Loved ones are concerned and want to know what’s going on. This is a way to do so without receiving a ton of texts/voicemails.
- Remember to continue to eat right and get your exercise. Even if it’s just getting outside for a 10-minute walk. It’s that important to your own mental and emotional health.
- Take care of yourself. Get some much-needed respite. It might be hard to think about, but this is essential. Caregiving is not for the faint of heart. You will need the time to regroup.
- Have a place to write everything down. Maybe a calendar, a spreadsheet? For example, there are a ton of med’s, a ton of rules about how and when to take those med’s. There can also be a lot of appointments. For some, it really does start to feel like a full-time job. Being organized will help to navigate this tough road.
1. Hesitate to get a second opinion and interview more than one doctor/clinic. It might be important for you to know your options and get a feel for the personalities of the doctor and his/her staff.
2. Try to do everything yourself. See above in the Do’s list.
3. Hesitate to call your doctor and/or your doctor’s nurse if you have any questions/concerns. They usually call back in between patient’s or at the end of clinic hours. Have your phone nearby and answer it. It is a total pain playing phone tag with medical people.
4. Forget to get your loved one, the patient, off the couch/out of bed and get outside. Even if to just sit in a chair or walk 200 yards. If the weather isn’t great, see if they’ll go to the mall to walk and sit. He/She will probably feel like crap and will not want to, but it’s important mentally for them to have a change of scenery and move their body.
5. Forget to try to keep life as “normal” as possible. Continue with family dinners, continue seeing friends, continue going to work. My husband went to work every day during his chemotherapy treatments. He was white as a ghost, had no body hair to speak of; but more importantly, he had zero energy. Yet going to work was still important to him. I remember him saying to me that he still wanted his life to be “as normal as possible”. Even if he just sat there at his desk. He was in the land of the living!
6. Go with your loved one to their appointments. Unless your person really does want to be alone, I think most people like having a support person with them at their chemo appointments, scans, blood draws, etc.
7. EVER let your loved one, or, if you’re the patient, EVER go to a doctor’s appointment without a second person. You need another set of ears to hear what the doctor is saying. I would even bring a notepad and write down what you’re hearing.
8. Forget to write down your questions ahead of time. It’s ok if you forget something, you can call or email later. You’re going to think of a question at some random time. You will be happy when, at the doctor’s appointment, you’ve got that question written down.
9. Forget to take care of yourself! This bears repeating. If you are the caregiver, or if you are the patient-please do what feels right to you. Respite, emotional support, exercise and trying to eat right can feel like just way too much- AND it’s that important. Let your family, friends, neighbors, co-workers, help you out and let them take care of you. This is not the time to say “No, thanks”. This is the time to say “Yes, please. Thank you.”
I’m sure there are some other key points I’ve left out. Please share what you think is important to remember, as well.
It was a stressful journey. But with the help of so many people, we made it through to the other side. Our family, friends, neighbors, and coworkers were amazing! We could never thank them enough for their words of encouragement, the meals, the errands they ran for us. And the notes of love and support on social media were a huge boost as well.
As well I hope this post will help just one person/family should they ever have to face a health crisis.