I'm so scared, it's been 7 weeks now since my mum was fist diagnosed with NSCLC, we are no further forward, she has been so so poorly with her kidneys, nausea has been horrendous, shes fading away before our eyes and there doesn't seem to be any urgency to make her better.
They have seen a blockage and 1cm lesion on my mums kidney, we was told on Monday that it could be cancer, and it might not be, she would have radiotherapy due her kidneys not being good, a mri on her brain and an appointment with the radiotherapy consultant, and was sent home in agony and non the wiser as to what was going on.
The MRI scan appointment came and went, without our knowledge we phoned and left voicemails, emails to find out when the appointment was to be told it was 2 days ago and we had not been informed, I'm beginning to lose all hope and faith in the hospital now.
Mum and Dad went again to the hospital yesterday, only because my sister had finally got through to someone and said her treatment had been unacceptable, we have now been told that mum will be having chemotherapy, they cant tell us if it's cancer in her kidney still until next week and she has a mri brain scan on Tuesday now.. and Thursday they should have everything, so I am now going to this appointment with them, I need to know mum can have treatment with a chance of living and not just to exist, I'm done with feeling positive because I am so terrified
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LemonDropsDreamToo
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What deplorable communication practices that hospital has. There should be a patient rights advocate there. Go to that person and complain. My experience when we had to utilize the advocate during my mom’s treatment was very good.
Are you in the UK? Using the word mum makes me think so. If yes, contact the Roy Castle Lung Cancer Foundation. They will help you get answers. They can be found here at this website by clicking on the icon that looks like 3 rows of 3 bubbles or Communities (depending on which version you are using).
Yes in the UK, mums under one of the best hospitals but it doesn't feel this way right now. I've contacted our specialist nurse and I will also be contacting the Patient Rights like you have told me too, it's called PALS in the UK xx
Lemon don't be frightened that hospital and those Dr's I am so appalled. I would tell you to get a second option but they've messed around with her so long. Don't be frightened do what Denise said get a patient advocate they will help you get things done. Like I said don't get frightened get mad and tell them to tell you everything that's going on exactly what is happening with everything and her kidneys. They get paid to help your mom. It's your right and I wouldn't leave until I knew everything that's happening with your mom. Being scared gets you nothing but being mad does.Because there afraid of being sued. Stand up and do this for your mom and your family. As a matter of fact the family should go with you and the Dr's you don't leave until theve told you everything. Love susiejo1948
I've contacted the specialist nurse this afternoon and I will also be going with my mum and dad on Thursday, I will refuse to leave the meeting room until they can give answers/timelines and when my mum is going to start treatment. In the UK protocol is 62 days from diagnosis to starting treatment we have until March 25th, I get that.. But what I dont get is telling my mum for the last 3 weeks she may possibly have kidney cancer and yet no one has chased up her referral, it was only looked at yesterday, why do we have to wait until the 14th to be told the outcome, I need my mum to fight this and have the strength to see this through, at the moment its heartbreaking to see my mum so helpless. my mum deserves to have a chance and I just feel so helpless, I'm so scared SusieJo xxx
I am so sorry your mum has been treated this way. It is good you will be there for her at next appointment. Have your list of questions written out. It is easy to forget things when you are feeling emotional. Ask doctor if results are available to them yet and if so, it would be beneficial to your Mum’s health to not have the stress of waiting. Has she had any genetic testing? That helps determine the best treatment plan. I was diagnosed with stage 4 NSCLC in 2013 and obviously outlived the 8 months I was given. Don’t let statistics quoted overwhelm as each person is different and more people are surviving lung cancer. I am glad you are seeking an advocate to help with communications at the hospital. Being scared is a normal reaction. To keep this emotion from putting you into total panic mode, you are doing it right by seeking support and information. It is easier to handle the known and having so much unknown is why the fear is trying to overwhelm you. Hang in there!
Please do not be afraid to make a lot of noise - at this point you have nothing to lose. It might be prudent to schedule a second opinion now in case you end up needing it in the future. If you don't get satisfaction from the doctor and the hospital, you might want to think about changing doctors. Also, use the fear - turn it into action - write down all of your concerns so that you don't forget or get sidetracked, and make sure everything is addressed.
I am the caregiver of a NSCLC patient; while,I am sorry you have had this abominable neglect, the key is to research, stay focused and wrote every question you have down and demand answers. Also understand that the system is not human based until you make the oncologist actually see you mum and connect. That is when it changes. Hope is so elusive, treatment so personal, love so crucial.
The Cuban vaccine (CimaVax) is not currently approved in the US. It's currently bring tested in it's first US trial at Roswell in NY. Personally it's not something I'd consider (based on following patients who tried tt without a good response). I'll continue to follow the trial and do hope in time it may be able to help others. Right now I think we have better options available.
your mom deserves so much more, raise hell if you have to it is a year after my diadnosis and i'm still finding i have to fjight to get my treatments. i get them but i have to stay on top of it.
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