Losing Hope: Poor Quality of Life After Cancer

Hello! I don't know if you know who I am, so let me introduce myself. My name is Anita, Anita Brown; I am married and have a son called Ashleigh. Ashleigh became a dad this last year, and I became a Nana. I was diagnosed in 2016 with small cell bladder cancer that had spread to my lymph nodes, liver, and bones. I have outlived my initial prognosis, but we don't know anything about my future. I have said before that we are living in "limbo land," making the most of every bit of life we can.

What about quality of life?

But what about quality of life? What about when your illnesses really start to have an impact on "having a life?" What happens then? Since October when I was unlucky enough to catch the flu, my health has been appalling. I have spent weeks - no MONTHS - resting. I get better for a day or two, and then it is downhill from there. Coughing, not coughing, full of mucus, clear - every day it's something. I finally went to the doctors and was sent for a chest X-ray. The X-ray came back clear. I was still coughing to the point where I started to get very dizzy and sometimes passed out when I coughed. This was January 2020.

An episode sent me to the emergency department

I had an "episode" at my mother's which resulted in my family calling 111. For those who don't know, 111 is a UK service that you can call for advice, and if they think it is serious, they will tell you to go to the hospital. We went through some questions, and the woman told me to go to my nearest A&E (Accident & Emergency Department) within the hour. Upon arriving, I was seen by a doctor who said I definitely need to be checked out. I sat for 4 hours until I was seen. The doctor was curt as I explained my issue. He scoffed and said, "No one can have a cough or a cold for this long." I repeated myself. You could see he was looking at me like I was wasting my time and his. Turning up to A&E with a cough!

Feeling dismissed and humiliated

I was mortified. He said that my chest sounded clear, which I had already told him. And then he said that my heart sounded okay but, with a big sigh, he said he would do an echocardiogram "to put my mind at rest." I felt humiliated. Shamed. He left the cubicle, so I put my shoes and left. I left that hospital with tears in my eyes and shattered hope. I think since then I have refused to go to our doctor because all I get told is that it will get better in a few days. A FEW DAYS!!! This is knocking up 4 and a half months!

Feeling miserable for months with no improvement

For the last few weeks, I have had a sore throat, sometimes the roof of my mouth, and sometimes the bottom. I've been doing nasal drops twice daily and well as nasal flushing (yuck, yuck, yuck). I have felt dreadful. My body has no energy and by gosh, it's like swallowing razor blades. Sometimes the food doesn't stay down. While brushing my teeth last night, I noticed a yellow lump at the very back of my mouth/cheek area... and wow, another on the other side. It's gotten so bad that this morning, I asked my husband if he could call the doctors to make me an appointment. My lovely neighbor took me as I am not allowed to drive because I will cough and maybe pass out. THAT'S NOT GOOD! So until I find out what going on, I won't be a danger to myself or others (plus the doctor said best not to drive, too).

I was not taken seriously at another appointment

If I am honest, I think the receptionist had a guess that I may have tonsillitis when making the appointment, so tonsillitis is what the doctor wanted to see. I DON'T have tonsillitis. I had to point out the pus-filled things in my cheeks. She mentioned bacterial infection and then uttered the words, "Well, what with all your other conditions..." and left the conversation at that. She told me to take some acetaminophen and ibuprofen and go to bed.

My neighbor stood up for me

My wonderful neighbor stood up for me and said, repeatedly, about this illness having gone on since October. And all the doctor could say was, "Your tonsils aren't swollen." Okay, so maybe they aren't swollen, but what about the things in my cheek, the pain I feel in my throat? What about the headaches? The feeling ill? WHAT'S GOING ON? I feel deflated. Written off.

My quality of life is rubbish

I feel that they see the words "advanced cancer" and that they just write me off. Either I'm too difficult to treat and they can't be bothered or that they just think, "Why bother, she is going to die anyway"? This time, right now, is about my quality of life. MY QUALITY OF LIFE! Let's focus on the quality of my life, shall we? Other than a few days here and there, my quality of life is being impaired by my illnesses, some of which have been inflicted during chemo and bladder cancer.

I want compassion and a better quality of life

I WANT a better quality of life. Otherwise, what is the point? No, I'm not suicidal. I just want someone to see 'me,' all of me and my symptoms and be compassionate and understanding about what it's like to live with an advanced cancer. I'm trying not to panic with every twitch, and I certainly don't go to the doctor every week. In fact, I just don't see the point in going anymore because no one seems to be able to take me seriously or believe what I am saying.

I know my body, but I am angry and tired

And... I AM GETTING ANGRY! FRUSTRATED! Tired...I'm getting tired. Why am I having to constantly fight to be listened to by my doctor? Why should I be made to feel that I know NOTHING about my own body when I was peeing blood for over 6 months before I was diagnosed with bladder cancer? I feel that I am being fobbed off. But the worse thing is, I have no energy to fight them anymore. I have no energy to try and convince them that something is going on. After all, I asked my doctor if I had erythromelalgia 2 years before a consultant diagnosed me. So, I feel I know my body, thank you!

I deserve better

I have even been told, by a doctor, that I "didn't know where my kidneys were." I've only 26 years of experience in UTIs, kidney stones, etc. after all. I have lost faith in the medical world. They may have kept me alive for longer, but this quality of life isn't the one I want. Nor is it the one I deserve. I'm not one to be pushing or rowdy, that just isn't me. I don't like confrontation nor standing up for myself either really. Usually, I get angry, shout a bit, and then cry. Then somehow, I come away looking like an idiot. I think I have to get tough! I JUST DONT NOW HOW TO.

Living better after cancer

We are living so much longer now with so many different types of cancer. We NEED to start getting the 'aftercare' of cancer right. The 'living' with cancer - but not living in pain or fear - actually living. We shouldn't be made to feel that we "don't matter." We deserve to be heard! Otherwise, I feel that we are just waiting to die!