Hi all, Not sure whether I have been here or not. Had upper right lobectomy Aug 5. They thought it was just in the lung and i'd be 'cured'. It was also in the lymph nodes so now scheduled for my second of 4 rounds of alimta and pemetrexate nov 5. I am all alone and nobody will help me. Have called social workers, local agencies, was even given palliative care. I have no vacuum to clean, no washer and dryer and 3 animals so we sit in filth. Can't work so soon house will not be an option to llive in....electric, taxes, etc. Not sure what my point is . I also cannot breathe. I was sent home Aug 13 after lobectomy Aug 5. Was back in ER Aug 25 from pleural effusion. Was able to breathe after that. FOR 3 WEEKS.. then I got a sore throat, had trouble breathing. Been on 3 courses of steroids and antibiotics. This is not normal. They are calling it a COPD flare. Never had this in my entire life. Got xray. Have elevated hemi diaphram. I am thinking of not doing anything else. No chemo, nothing. If I can't breathe and even TRY to take care of my animals, why do chemo which will make me worse with no help either aide-wise or financial to hire someone to do everything I did. Soon yard will be tagged by city for high grass and added to my tax bill. Any thoughts? i am rambling I realize. sorry. I have no family, no friends, absolutely nobody. seems they have left me to die a miserable death alone. heck, even local humane society wouldn't bring me food for my poor rabbits.
Stage III nsclc, lobectomy and now chemo - Lung Cancer Support
Stage III nsclc, lobectomy and now chemo
Hi, Julieann. I am sorry you are feeling so down right now. Lobectomy is a really difficult surgery, and I am not surprised that you are not "over it". Pleural effusion is very uncomfortable and also a symptom I had that let to my lung cancer diagnosis years ago. I also had the chemo treatment combination you described. I did six rounds of it, though, because I was able to tolerate it well and thought that would provide the best chance of shrinking my cancer. My palliative care doctor and nurse were great at helping me manage the side effects of treatment. Ask them, or your oncologist, about respiratory therapy or other help with the "I can't breathe" feeling. Some medications (anti-axniety qualities) can help with that also. My onco-psycologist/therapist remains an important part of feeling well emotionally. Can the hospital social worker help you qualify for disability if you are unable to work? There is an organization called Cleaning for a Reason that provides cleaning services for cancer patients. I don't know anything about the application process, but you could find information on their website. Do you belong to a church or faith community? Many have groups who prepare meals for people in their community going through an illness or grieving a loss...maybe they could get you on their list. If you are seriously considering not going forward with more treatments, social work and/or palliative care could help you think it all through to make the decision that is best for you. It sounds like you need more resources to help you get through it. I hope you are able to connect with some. Cancer really does stink. I am sorry.
Thank you! Neither my pulmonogist, oncologist or primary EVER suggested respiratory therapy. Hmmm...oncology social worker just threw a homeless shelter phone number at me. All the help she ever did! The nurse is the one sending off applications for a food grant for my pets even. Palliative care did nothing.. cancelled my appt with them . Seems they have left me to die. I must've pissed off someone powerful is all I can think. Well, going in for 7 hours of chemo today. Ended up in the ER last Thursday16 days after first chemo for a blood clot in the vein they put the chemo! Superficial thrombosis so they are just gonna do another doppler this Friday with that. Just hopeless. I do have a cpl wks left w/ an online counselor w/ Jasper Health.. She got me 2 cleaning sessions w/ Cleaning for a Reason but my house is too dangerous. I was in the process of remodeling and have floors and ceilings out so that isn't an option. This is just wild sitting here in a dangerous house ppll can't come in and I can't fix now. I just need meals. Don't even have dishes now. They got so dirty and moldy i had to throw them out.
Sorry that you're so alone and struggling. It sounds as if you've had a rough ride - I had my upper left lobectomy in Dec 2010 but from 2015-2019 had several nasty chest infections that hospitalised me. They led to the feeling of being unable to breathe you describe and in 2019 after lots of tests was told I had ILO (a form of vocal cord dysfunction) and since described as breathing pattern disorder. Many (including me) didn't really appreciate what they've gone through with lung surgery and end up with some type of post surgery anxiety/trauma when the shock hits our minds of what happened or might have been. Anxiety doesn't help our breathing either - sadly so it's important to breathe more effectively - often by slowing our breathing and breathing deeper.
I was signposted to various online resources to help me relearn how to breathe better - as I wasn't using my diaphragm properly and breathing really shallowly through the neck and intercostal muscles.
Steroids and antibiotics are the usual treatment they give me too but they change the antibiotics each time to see if they can 'guess' what is causing the infection.
I hear your pleas for help and in your shoes I would be fighting - when I learned how few patients are diagnosed early enough to have a lobectomy it made me even more appreciative. of the opportunity of a second chance at life. UK lung surgery is mostly keyhole rather than the open surgery I had so people usually recover quicker with lower risk of infection. Having had Pleural effusion your fear is understandable - most recover from that too.
Chemotherapy is often given to 'mop up' any stray cells and as yours was in your lymph nodes that would be the treatment to kill off those cells if they've spread there. It certainly sounds as if you're quite overwhelmed physically and emotionally at the moment.
Surgery is usually carried out with curative intent so unsure why you would have had palliative care - are you being treated at a specialist centre or a local district hospital? Some treatments may be referred to as palliative to relieve the symptoms rather than the inference we often take that means imminent end of life care. I was treated at a local district hospital and sent off to various different hospitals for scans, appointments, surgery etc with follow up by a visiting consultant at the local hospital. I was given the run around compared to those I've spoken with who were treated at specialist cancer centres and didn't have access to a specialist lung cancer nurse. Do you have one of those you could contact?
Are there any animal charities/sanctuaries in your area? they often have volunteers who may be willing to either come in and look after the animals or temporarily home them whilst you recover.
In the UK there is also a disconnect between social and medical care as well as between primary and secondary care and often one won't intervene if it thinks another is already in the frame . Sorry I'm unfamiliar with your care system but if you could maybe get somebody to advocate on your behalf that may help. Have you contacted the lung cancer charities? they may have further suggestions. Hope you can get some help soon - your animals maybe give you a reason to fight and have treatment being offered but that's always a personal choice but at the stage your cancer is likely to be, it wouldn't usually be a reason to give up to die. Many even at stage iv have treatment, respond and do ok - some travelling, active etc. Having been given potential curative treatment and offered further treatment it doesn't seem to me that it's worth giving up on that option but I do understand that once our thoughts sink, they can quickly become a downward spiral if we don't get some support. Do reach out to the charities to see if they can help on your behalf. good luck.
It looks like you may be in the US? Have you connected with the American Cancer Society? They have a 24 hour help line and may be able to suggest resources in your area. cancer.org/support-programs...
But if you're in the UK, it looks like the equivalent is MacMillan: macmillan.org.uk/healthcare...
Also, if you are in the US are you being treated at a cancer center? There should be a social worker to work with
Also try Asthma+lung UK which is a merged charity from Asthma UK and British lung foundation which has a lot of information about different lung conditions, symptoms and ways to ease them.
Right upper lobectomy
Update on my mum with stage IV NSCLC
Breathlessness after pneumothorax and lobectomy/ segmentectomy 
I need advice on managing chemo side effects for a stage four NSCLC patient 
