My Husband
It took several months to diagnose my husband's cancer as he also had vascular dementia with mild to moderate cognitive impairment & initially when he began to have difficulty speaking & swallowing the problem was thought to be neurological. By the time his cancer was diagnosed it had already spread to both left & right lymph nodes in his neck. When we met with the radiation oncologist we were told he could cure my husband with massive doses of radiation & any side effects were very much minimized. There was no discussion of palliative treatment.
My husband suffered without complaint through daily high dose radiation & 2 treatments every Wednesday until I thought the treatment would kill him.Which it almost did. When we went back to the clinics I would always ask him if there were any questions he wanted me to ask his doctors & it was always the same "when can I eat". In time the answer became apparent never, the radiation had destroyed his epiglottis, not a minimal side effect at all. He was kept alive with g-tube feedings which I administered for the remainder of his life. He never did have any quality of life after the radiation treatments.
Post radiation neck x-rays were clear of cancer but when I repeatedly asked for a chest CT scan due to his lymph node involvement I was denied. I was told my husband would die of something else other than cancer but to go to our family doctor if he had any symptoms such as a cough.
Less than a year after his radiation treatments a time which was a nightmare of trying to obtain some help at home with his ADL's & worrying what we were going to do as he became weaker, he did develop a cough. His family doctor sent him for chest X-ray & gave him antibiotics as it looked like he had an aspiration pneumonia again. When he wasn't any better after 2 weeks another x-ray showed something much more serious & his doctor referred him to a thoracic surgeon who ordered the CT scan of his chest. He also did a thoracentesis draining 1300 mls of bloody fluid from his right pleural space. When we returned for followup visits I always asked the surgeon what the CT scan showed but he would never tell me. I also asked him to refer my husband to palliative care but he would not until our last visit. At that visit his reply to my request for the CT diagnosis was that he just threw up his hands & said "what else could it be". He would not even look at me.
On December 25th 2016 at 8:00 p.m. my husband vomitted & aspirated. I called 911 & we were taken to emergency where my husband was finally referred to a palliative care oncologist who told me the CT scan showed my husband had stage 4 lung cancer. He was admitted to the palliative care floor & he died December 30th 2016.
I feel I failed my husband. I kept asking for a palliative diagnosis to try to provide the best care for him. It was not for him to be in hospice as I had decided I wanted him to stay at home as long as possible. At one point after seeing the thoracic surgeon I spoke with our CCAC supervisor & she added a second 20 minute PSW visit which she told me she would have to cancel if I did not obtain a palliative diagnosis soon. At this time my husband had only one to two months to live so well within the necessary 3 month criteria. I didn't even know how soon he would be leaving me since his doctor denied my request for diagnosis . I received a scheduled appointment with palliative care doctor for him the week after he died.
In a way I feel as if he died very suddenly as I was only told the truth about his condition 4 days before he died. As I was not only his wife of 40 years but also his POA I had a right to be informed of his condition & terms of treatment especially since I asked over & over again throughout his illness.
I will never understand why my questions were dismissed by my husbands doctors. I don't think he would have survived his cancer but I do think that the quality of his last months could have been much improved.
