Great confusion, great disconnect between the various doctors and treatment centres

[Alsdouble]

My wife was diagnosed with lung cancer this time last year. She breezed through chemo, and results were good. Then things were left alone, nothing happening 6 months. When discomfort returned she goes in to radiation therapy. After ten days of that here quality of life is destroyed. Can't eat, drink are function normally. Twice back in the local hospital for assessment (for the Christie), and some recovery two weeks later. And then immunotherapy. One treatment of that and she is destroyed again.. two weeks later. Back in local hospital for assessment. Chest infection. No appetite, sleeping all the time. General quality of life, bad. Her next 1/2 hour of immunotherapy in five days. I can't see her making it to that. What amazes me in all of this, the massive disconnect between the local hospital, close by, the famous Christie. not close by, and even local doctors. If there is a light at the end of the tunnel i sure cannot see it. Any observation would be welcome.

[Denzie Moderator Volunteer]

Where was the radiation? Lungs, esophagus, brain? Very sorry to read about her difficulties. What type of radiation did she have? I would challenge her doctor about receiving the immunotherapy.

[June2081]

First of all one thing I’d say to all cancer survivors is “Never give up hope” I do believe there is a direct link with this disease and mind, body soul. I can tell you I’ve been through some rough chemo, one treatment had me crawling to the bedroom but all the while I said to myself this is NOT going to beat me. I’ve been fighting this since 2012 and it’s been a roller coaster ride! My faith has grown tremendously and I find great comfort in prayer and meditation. You’re wife sounds like she’s been through a lot, keep holding on, she will be in my prayers. We/you also have to be your own advocate, just because the doctor says it doesn’t mean it’s right for her,do your research, reach out to others, get second opinions, this is your wife NOT some person with cancer! Best of luck.

[Feelingblessed2013]

I agree with both Denzie and June2018. Don't hesitate to question your wife's doctors if you feel the need. Until your wife gets some strength back and is able to be her own advocate, you need to act in that role. Does she have a primary care doctor? If she does, make sure he/she is kept informed of all her tests, treatments, cancer care, and is kept current on her condition. Don't hesitate to ask if the doctors are sharing info, don't forget, they work for you and your wife.

You said that after chemo, she was left alone, that nothing happened for 6 months. That doesn't sit well with me. For me, once treatment ended there was a CT scan every 3 months for the first 6 months or so, then it was pushed out to every 6 months. After a few years of scans and still NED, it was pushed out to once a year.

As far as her not eating, when I was going through chemo all I was able to eat was an occasional bowl of chicken noodle soup. Most of the time I drank Gatorade and Boost, I would sip on the Gatorade all day, and usually had 1 or 2 Boosts every day. There are other nutritional drinks out there that she can try, I used boost because it's the only one out there that's safe for lactose free diets.

[Alsdouble]

Interesting comments. I find dealing with 'the Christie' a total frustration. She actually has two appointments this week on 2 consecutive days for CT scans at both the local hospital and Christies, despite many attempts to sort things out. Contacting them by email I was forced to use an encrypted email service which got me absolutely nowhere. They may be doing great things but I find them ignorant and totally up themselves. Myself, as 'the husband' well, data protection is a wall they love to use to avoid answering questions.

She is a little better today, I'm glad to say. In actual fact it would be accurate to say we do not actually know what is going on, and I'm not sure they do either. However, if I was paying for this, and not an NHS patient I rather think they would to back flips to cater to our every need.

[PegD]

Is it possible that she might be experiencing pneumonitis caused by radiation and potentially exacerbated by immunotherapy? I understand that on a scan, pneumonitis can easily be confused with pneumonia or chest infection. Steroids are typically used for pneumonitis. I hope she is doing better. Please let us know.

[Alsdouble]

She is much improved after the antibiotics. In a meeting with specialists at the Christies yesterday steroids were ruled out. She had been advised to restart taking steroids again at the local hospital. (She also had blood tests and and X-Ray, all ok.) She now has 1 week to the next half hour immunotherapy. In the mean time regular blood tests and a CT scan locally. Fingers crossed. No pain no gain they say...we maybe they are correct.