Bad week

[LilyMir]

I am having such a tough week. Just getting over my second UTI in as much months, a few days ago I had a virtual exercise session as part of my heart rehabilitation thingie. It felt fine though I was tired and needed to slow down sometimes. After it ended my heart remained beating quit high, like 120-130. Tried to calm down and we drove to my kids school with hubby to give him lunch in the car. As we parked I felt faint and nauseous with pounding heart beat so told my husband to call an ambulance. Fire trucks arrived first until an ambulance was found which took a while (yeah it is that bleak in BC) so I told my husband to take the lunch into the school so our kid does not freak out. Our kid was smart and was very against eating inside but dad gave him a few bites as the ambulance came and took me to ER. He then finished lunch in the car. Two days later now he wakes with blocked nose and sore throat with fever. I am gutted. I feel like to worst mama as my heart episode resolved, my ECG seemed normal and so did not even see a doctor. The ER wait time was 8-10 hours so I just left.

I feel like rubbish now having caused my kid to catch a germ it seems. Really gutted and crying my eyes out. F*** cancer and the pandemic, what a nightmare.

[Justin1970]

Hi lily 

Sorry to hear your having a tough week and that your son picked up a germ I'm glad your feeling better in yourself but sorry your sad this disease really is a nightmare and the pandemic really hasn't helped make it easier, me and my 18 year old even did all the shopping for my elderly parents and my wife's dad through the lock down and I was more vulnerable than any of them I just didn't know it at that time, try not to worry and get upset there is better times ahead,

Take care Justin x 

[Karen_L]

@LilyMir It was very smart to call the ambulance.

I urge you to call your oncologist and talk about this episode. See about having your heart checked again; it's not all that common, but sometimes Tagrisso can do something with the rhythms of our hearts.  My doc orders an EKG quarterly (at least) and I will be having an echocardiogram later this month. 

One of the hardest things as a mom is when your kid gets sick. Trust me, you can't know with certainty where he picked up that bug. (Oh, the stories I-- or any mother-- could tell.... )A few bites of lunch indoors might have been the exposure, then again, they might not. Unless you're with him all the time, there's no way to know what other moments in that day, or any day before that, were like. There's no real way to know whether he would have come down with the cold anyway. 

You know how they say in airplanes to put on your O2 mask first, then your child's? You did exactly that in the situation-- took care of your potential physical emergencies first. 

No one can do two things at once; you picked the priority. And, sometimes bad stuff happens. You've certainly had your fill of it. Can you do some slow, deep breathing to ease some of your anguish?

Hang in there.

[LilyMir]

Thank you @Karen_L, I certainly need to stop beating myself up for everything, but the guilt is just killing me. I will never know if that short exposure over lunch is what got him sick but 3 months of school went OK until this incident despite so many in his class getting sick during that period. My kiddo is a mask pro and is so smart, we have to fight him to relax his mask or ever remove it when outside home...

 I really thought it was the right call to ask for ambulance but the whole system makes you feel like an idiot. It is kind of like the paramedics were disappointed that my heart was settling by the time they arrived and the questions started about "do you have anxiety". The story of my life, years of being dismissed by doctors about feeling unwell until boom lung cancer diagnosis. Now same with tachycardia...

I have had a number of heart tests since my chemo (following surgery), which is when my tachycardia started (many ECGs, one echo, one stress test, and one 5-day holter which they told me were all normal- except sinus tachycardia ). There is even one episode of tachycardia that predated my cancer diagnosis. I guess this is why they are starting to ignore my tachycardia, which is horrifying. When I ask the oncologists, they tell me I had so many tests, much more than they usually do! When I asked for oncology cardiology referral, they saw me once and said your heart is OK. I saw another cardiologist after going to ER in the past but he said he found nothing to explain and gave me some beta blockers (did not take them). I am tired.

The 2 ECGs (before the ER one, which I don't have a copy of yet) I had since starting Tag showed normal QT interval. I asked my GP for an echo since oncology refused to do one (!!) but I have yet to receive a date since our hospitals here in BC are collapsing. This week alone 3 kids died of the flu in BC and hospitals look like war zones.

It is all nerve wrecking and seeing my boy get sick after protecting him 3 years hurt so much. His school is filled with sick kids who come despite being sick. No one masks. Teachers are sick, parents are sick yet everyone is partying like it is another universe. Even those who know I am CEV come to talk to us to tell us they have the flu. People are just so damn selfish and mean I am too tired. I hear the same stories of rampant illness from friends who have school age kids, half the schools are absent but there is no political will to reduce the misery or carnage. 

[Karen_L]

It is such a time of fear, about our disease and then on top of it, the world. I can only take care of myself, and be a good family member. Keeping that balance with a child to raise would be a huge challenge, but I know I would figure it out, because I would have to. I know you can do it too. 

The ways I deal with it seem insignificant, but they help me. I do not watch any news. I limit my time on lung cancer-related survivor forums, except this one. I belong to a local cancer support group. I see a counselor weekly. I do as much as I can online or at a distance from others, but I have decided on a day-by-day basis to do what I need to for relationships that mean the most to me, and for the rare time I do something that will bring me great joy. And I will take as many precautions as I can. Today, for example, I will meet my daughter for coffee in a large place with high ceilings. I will keep my mask on and use a straw. Saturday, I will go with my husband to a performance of The Messiah, which we have sung and love deeply. I’m nervous, but this means a great deal to both of us. I have some leadership positions that are sometimes hard to focus on, but that’s just what it is. I do the best I can.

I don’t speak much about my lung cancer or how I feel about it. People can be unintentionally mean or thoughtless. Recently, someone said something that was on my mind for a while afterwards so I wrote her how I’d felt about what she said, and speaking frankly about my despair and occasional deep fears.

I forgot that people don’t understand, that they forget we aren’t like other people. The emotional work of trying to get them to understand and remember my circumstances is not something I am willing to spend time on; they won’t and I will exhaust myself and feel bad. I will not spend my precious time on that. 

Maybe it would be helpful to you to make some conscious decisions about your situation. Who you will talk to, what your limits will be. For me, that would include examining my expectations of myself as a parent and spouse. I have made small shifts in my relationship with my husband, for example. He loves me, supports me fiercely, and stands with me, but there are some things he just doesn’t handle well. That’s the reality, one of the new realities of life with lung cancer. I didn’t choose it, but I can decide how I want to live with it.

I work hard to act consciously about my days, not react to what comes my way. I say try because I am always learning how to keep myself on an even keel. I fail sometimes, for sure. But I keep on because I want to live in peace, and with as much joy as is possible. And sometimes that’s as simple as seeing the hummingbirds at the feeder. And sometimes I have to accept that I am just having a crap day, where there is no peace and no joy. And I act as if I believe it will pass. It does, but not always at the pace I’d prefer. 

I believe you can do this too, in a way that makes sense to you. I always wish a little more peace of mind for you than seems present in what I read here. The physical stuff you’re coping with is challenging enough; I believe you when you say you are tired. You can do this, @LilyMir. You can.