Hi SB,
Yes, I think there are many people who refuse treatment and they have the right to do so. It is a very personal choice. My husband and I had talked about euthanasia as neither of us ever wanted to end up in a nursing home. We were traumatised by the nursing homes my mother had been in for 10 years after a stroke. Witnessed so many horrendous things and some wonderously kind and gentle people who helped my mother greatly in the best nursing home. I did not ever want to put that strain on my children as it was such an anxious, stressful and at times, heart breaking time.
I had surgery and radiotherapy in 2019. I had discussed with my husband, euthanasia again. I said I could not go through that again and would prefer euthanasia. When the situation actually arose, I could not decide to do it. When we calmly talk about it, unemotionally we're both absolutely sure. When it actually happened and I received a bad diagnosis, I could not leave him or my family willingly. It was all in the timing. It was my husband's last day at work as he was retiring and the work extravaganza Christmas party that day. He didn't get home until after midnight and I pretended to be asleep. I could not tell him on that day. We had bought a motor home and decked it out and we were just so excited to travel all around Australia with our dogs.
As it was just before Christmas and it was the first Christmas that we were not hosting Christmas dinner. I just had not been well enough and one of my daughter's hosted it. It was also the right time as they had teenagers by then and life changes and they needed to create their own traditions. I did not tell my children until they were all back from holidays. I only had my husband to talk to during that time and it was a vry dark time as you don't know anything at this point and that is a hard place to be right before Christmas when everything closes and you just have to wait until you can get an appointment to start talking about a plan. We did get through that time with some dark humour, visited the local cemetary and made plans about dying.
When the surgeon outlined the plan, I was already sick with apprehension. This time there would be chemotherapy and I'd seen people go through it and disappear. I did not know how I would be able to get through it. All my stress, anxiety and fear from every other traumatic medical encounter just came rushing back and it was just overwhelming. I am warned twice about sepsis and how quickly it comes on and by then it is too late and you could die. At those points I thought, just let me die quickly as it would be more merciful.
Radiotherapy went really well. Next week they will be making a new mask - one you lie down on - again as the tumour has shrunk again. It has to shrink to be able to go onto surgery.
Unfortunately the Chemotherapy did not go so well. I had a severe adverse reaction to the steroids in tablet form you get before they start the chemo IV - supposed to make you stronger and be able to deal better with the chemo. I had both the physiological and psychological side effects of the steroids. Swelling of feet and ankles - 3 weeks of it now - severe mouth ulceration and pain right up to Mucositis Grade 3. I just can't even think of all the physical ones. Psychological side effects were the worst. After first dose I could not sleep or turn my mind off as it began spinning out of control. I couldn't remember anything, hold a thought or keep on track with what I was talking about. No sleep over a 24 hour period and then 2 hours and the same again the next day. Without sleep my brain was just in a manic, out of control spiral and I could not stop talking or writing. I thought I had developed sudden dementia or a brain tumour and it was terrifying. Many other side effects as well. I am writing this at 5.20a.m. so probably not the best time for clarity. Symptoms were so severe that the Radiotherapy nurses did an investigation into Chemotherapy department which is not their job but thank goodness they did and they were spot on with what had happened and when. They put a warning on my file Extreme Sensitivity to Steroids and listed some of the side effects. I thought that would be great but that label will only come up in Radiotherapy Department - no where else as computers between the two were unable to communicate.
I've made an urgent appointment with Oncologist to talk about the next cycle which begins the following week. I cannot and will not have steroids again. It was extremely traumatic. I have not seen him or heard from him since the day of first consultation. He might say - no steroids - no chemo. I don't know but I will never go back to the hell I was in during the first round of chemo.
Again, I absolutely understand your point. Quality of life over quantity. I don't regret trying especially because the Radiotherapy is going really well. This is the best I could do and I have explained over and over again to my family, no you don't understand how strong and terrifying that adverse reaction was. I can never have that poison in my body again.
Enjoy your time every day and make sure everyone knows how much you love them and also allow yourself to grieve too. At one point I realised I was grieving about me leaving my husband of 50 years and his bewilderment in the world without me. We can only do the best we can and hopefully leave a legacy of good memories, love and strength you gave them stays with them throughout their grief. I wish you the very best on your journey, which is yours alone. You get to choose what is right for you.
