Ask Leo Hanes All About Lung Cancer

Later in evening sister in law arrives with plants from her garden that she is renovating….enjoyed visit and tea and cake together

Sunday Sept 21

Awoke at 0900 —-J

Helped Trees plant all the new plants in front yard,,,, enjoyable, yet knocks me out physically

Otherwise a quiet restful day together

Monday Sept 22

Awoke at 0430 with what feels like start of head cold, sinus dried out, and raspy throat

Take a walk to canal for about 25 minutes ,,,,,,,,,,feels good

Tuesday Sept 23

Awake at 0730 ….head cold continues….

This is the first cold in almost a year….body was too busy fighting the cancer, and treatments……..so a cold is a blessing in disguise I feel….

Wednesday Sept 24

Awake at 0745 with nagging cough still hanging on

We do a major monthly food shopping trip today… Lidl, Jumbo, and local butcher

Seem to be fighting low energy levels again

Thursday Sept 25

Awoke at 0100 with major coughing, clear foamy mucus again, took 2 x 500 mg perasidimol, and was able to sleep until 0700

Went for 45 minute walk along the canal again….always refreshes me to visit the water… a favorite spot to reflect

Sheesh its almost a week since Tracy and Tim left….was great seeing them for the week……seems like just yesterday when I was just waiting for their arrival and now they been here and gone again….

After coffee, and a bite to eat we take them to the weekly market in Centrum, even though there was a light rain

Jet lag strikes…they sleep from 1300 - 1530, me too….

Sunday Sept 14

Yvonne and Gretjan visit 1130 - 1900, all 5 of us travel to Postel in Belgium for fries, and ice cream

I sleep from 1400 - 1530.…was up until 2300, actually feeling quite good again

Monday Sept 15

Up at 0730.…Tracy & Tim sleep until 1030ish,,,, jet lag diminishing

Again I slept a couple hours in the afternoon….

Tuesday Sept 16

Awoke at 0230 again with coughing, and clear foamy mucus…..

Went into the town center with Tracy and Tim to show them the sites, and enjoy lunch together

Again I slept 1600 - 1730.……seems to be a need this week again

Wednesday Sept 17

Did a 5 hour driving tour of a dike road in rural Netherlands near Leerdam, stopping for a nice lunch at a farm restaurant we had discovered on an earlier trip

Tracy and Tim made a special dinner for us tonight

Thursday Sept 18

Up at 0730, took a walk near the canal near our house, its been a while

Again slept in the afternoon 1530 - 1630.…

Enjoy visiting with Tracy and Tim

Friday Sept 19

Up at 0700 to drive Trees to work, so I can later drive Tracy and Tim to train station in Tilburg Centrum.

They are spending the day in Amsterdam, staying at the new CitizenM hotel at Schipol to catch their return flight to Canada at 0750 tomorrow

They catch train at 10:15 enroute to Schipol, I pickup Trees from work at 1230, and again slept from 1400 - 1645

It is always sad saying goodbye to family when they visit, but we must in order to greet them when they arrive next time….SMILE

It was a great week spending time with them again

Somewhat energetic again, waking at 0730, took a walk through the neighborhood to view the area where the car fire took place last night

Took apart clothes dryer to try to remedy a new noise….

Investigated lost CPP check , and recorded contact information

At 1900 noticed back/lung pain starting again, took 2 x 500 mg perasidimol again

Thursday Sept 11

Awoke at 0730.…7 year anniversary of 9/11 in NYC

Appointment with Dr Retera at 1350, reviewed CT scan, confirmed no evidence of tumor, but radiation damage is in progress ( pneumonitis ) , that could last up to a year

He prescribed an inhaler to help with cough , and breathing, and continue prednisone medication, with next appointment Oct 15.

It was somewhat a relief knowing more about the radiation pneumonitis, yet frustrating at the same time that the treatment was causing such damage

The positive is … NO tumor….SMILE

Friday Sept 12

An uneventful day….seems like the inhaler is helping relieve cough symptoms.

Looking forward to my daughter, and son-in-law arrival from Canada tomorrow

Was an uneventful day, do not recall any particular fatigue….worked online most of the day

Thursday Sept 04:

Was up at 0715, enjoyed breakfast, watched rerun of Sara Palin speech on CNN…….was feeling a little funky by about 1100, nothing really special

At about 1315 I felt a pain building in my right ribcage/lung area, that became really overwhelming , lasting intensely about an hour…a real pulling pain….it reminded my of the pain I had experience in 1982 when my left lung collapsed……..scared the bajeebers out of me.

During this I took 2 X 500 mg perasidimol, pain subsided, and I slept from 1500- 1700

2030 took another couple perasidimol before sleeping for the night, knowing I had doctor appointment tomorrow

Friday Sept 05

Up at 0800, still very aware of “pulling” in right lung rib cage area, coughing was painful, took my regular prednisone meds, and my throat gunk meds……

1030 had chest x-ray taken in prep for doctor appointment

1215 we met with Dr Retera, he shows us the inflammation/ pneumonitis area has reduced, still an area closest to esophagus remains visible.

There is an overall lung shrinkage taking place ( i.e. diaphragm is higher on right side maybe 20-25%, which helps explain shortness of breath)

Yesterdays pain is not symptomatic or consistent with the pneumonitis progress visible….we discussed the shrinkage, scarring possibly resulting in fibrosis in some area, can’t predict of course

He prescribed another round of blood tests, and another CT scan, both of which were completed before leaving hospital

Next appointment is scheduled Thursday Sept 11

Took 2 X 500 mg perasidimol before bed at 1030

Saturday Sept 06

Experiencing some agitation , and anxiety today, overall fatigue not too overwhelming……feeling like the chemo fog and or med side effects taking over again

Sunday Sept 07

Up at 0700, breakfast etc, actually feeling ok, then I laid down just for a minute at 0900 , and woke at 1145

There has been little noticeable changes in my side effect symptoms, maybe a tightness in my lung area experienced with cough still hanging on…

Trees still battling some stress symptoms, causing her emotions to spring forth surprising her once again Monday…leaving her feeling she may not have recovered as much as she thought earlier….another side effect of lung cancer is its effect on care givers and loved ones

I am anticipating my follow up appointment with Dr Retera this week - Sept 05

The roller coaster ride continues ….

Apparently the antibiotics previously prescribed eliminated the “plain old infection” possibility, leaving radiation pneumonitis as the probable cause

My next follow-up appointment is Sept 5

“Radiation pneumonitis is an interstitial pulmonary inflammation that can develop in as many as 5-15% of patients with thoracic irradiation, most often due to lung cancer, breast cancer, lymphoma, or thymoma. Acute radiation pneumonitis occurs within 1-6 months following treatment. Symptoms can include low-grade fever, cough, and fullness in the chest.”…. By emedicine.com

Here is an article that may be helpful to others :

Radiation Pneumonitis

Aug 16 - Aug 17

Trees back to work part time, will see company doctor tomorrow

I slept 2.5 hours in the afternoon

Aug 19

Started taking medication 1 x 5ng in morning, and 1 x 5 mg in the evening, proves to work better for my ups and downs

Trees sees company doctor, who acknowledges the stressful situation, will try working 3 hours x 3days per week initially , then 4 hours x 3 days

Aug 20 - 22

Continue with meds 2 x 5 mg daily seems to be keeping me smoothed out..

Still experiencing afternoon fatigue and napping a couple hours…

Aug 23 - 24

Still maintaining an energy for online working, even though fatigue still persists somewhat

Enjoyed watching the Olympics through the week, as well as the closing ceremonies

Aug 25 - 29

Nothing significant to report…..some afternoon fatigue, but the meds and side effects seem to be balanced so far…

Aug 30 -31

A quiet weekend, with normal chores and shopping Saturday morning, with a trip to a glass mosaic shop near Eindhoven in the afternoon

Some fatigue still persists, with a slight throat tickle and cough, might try taking meds 1 x 10 mg again……..