Hello lovely peeps. I almost cried with joy when I found this group and am annoyed I didn't join before now, but I guess this is a process, and I'm so ready to speak to and help others if I can. I started with stage 3 breast cancer four years ago, had the full works, mastectomy, lymph node removal, a/c chemo etc. Within a year it had returned to my chest wall and lymph nodes in my neck at which stage I was told I am now stage 4 and terminal. I was given a rough estimate of 15 months to 2/3 years. Initially when I got the cancer I was all gung-ho and went to war. I had just lost my father, whom I adored to Multiple Myloma. Had to be treated in the same place. It was very hard emotionally. I'm still grieving four years later and feel now, I was in a daze the first time around and ashamed to say, I didn't really care or understand what was happening I was so sad. Since the terminal diagnosis I am struggling big time mentally and emotionally more than anything else. I began to withdraw from family and friends due to the constant questioning about the diagnosis. In truth, I'm not supposed to be here but I still am. My quality of life is poor since the second round of treatment. I barely got through it. I kept rejecting the drugs or reacted to them. I now have a very poor immune system. Every time I step outside I get an infection, cold, flu, I seem to be sick all the time. I've spent 15 months trying to explain to family and friends about stage 4 BC. I can look well one day and be out of action the next. Fatigue is a real problem. I went through months of severe depression and was amazed at how little help there is to manage this most important side to it. My frustrations with family and friends have boiled over, only making things more tense between us. My children are always angry, they minimize the illness and even told others I could live for years and years. This isn't true because my cancer journey was not straight forward. I have asked them over and over to not spring surprise events on me or call whenever they see fit, but this too is literally ignored. I can't bear to let people see me when I am vulnerable and upset, but they just can't understand it. How can they. I barely understand it myself. As a result I feel this inner loneliness, that no amount of people can heal. I have a very strong spiritual faith, this gets me through a lot. My best friend is furious with me for not attending events and recently insisted I get out of the house for fresh air. I'd just fought off a five-week long chest infection that almost landed me in hospital. I went out, but now I have that chest infection back, and I finally lost my temper with them. They're not speaking to me now and this hurts hugely. I've gone to all things that I could go to. I have explained that chest infections etc are so dangerous to me now. My CT's have been good, the cancer has not advanced to the major organs yet, but it will. My intentions (and the doctors agree) are that I try to stay out of the hospital for as long as possible. Why can't people understand this? I took the treatment which was not a cure, just life-prolonging, to stay alive. Had I not taken it I wouldn't be writing this. It feels no matter what I say or do, I am trying to please everyone and it's not possible. I've had to get tough and learn how to use the word 'No' . I'm a fiercely independent lady who never had to ask for anything and find it so hard to ask for help. But I find when people say to me what exactly do you want/need, they rarely deliver. They have their own ideas. I guess I feel I'm being held responsible for my illness and also to somehow magically cure it, with positivism, good diet, long walks. How does one explain what this does to your mind? I'm in a place of acceptance and peace and trying to stay there, but don't feel any comfort, real support or compassion. I also feel the physical loneliness of this disease, I often want to say to people it's not contagious! I'm so joyful I found this closed group and hope I can speak honestly and freely to others and perhaps support some of you on this precarious, confusing journey. Today I am going to have a luxurious bath and change my bed linen, for me this is good, for those around me it probably looks like a minimal effort. I see others climbing mountains and running marathons to raise funds, and I feel so useless and powerless all over again. Any advice would be so greatly appreciated, but just to write this out for me, is such a relief. God bless all of you. You're not alone. xx
Dear
i hope it’s been cathartic for you to say what has been on your mind all this time without the fear of being judged by others.
at my crafting class at my local hospice we have many amazing ladies with secondary breast cancer, some of whom have been attending for as much as two years despite their individual prognosis.
before I started attending the hospice I had no support and it’s been a life enhancing experience enabling me to continue with treatments I was finding difficult and de facto extending my life.
i have blood cancer but understand and share some of your experiences, but have learnt to put myself first and forgive non sufferers for their misplaced but well intentioned attempts to help me. They can’t understand the daily pressures of living with a terminal prognosis and that positivity is not a cure for cancer.
now is the time for you to create your own environment and do the things which enable you sustain a good quality of life even if this means setting to one side things or people who either can’t or won’t respect your philosophy on life.
Dear
its good to hear we’re on the same page, for now just try to live each day on its own merits, some will be good and some will bad but there is joy to be had out of life whatever the circumstances, so hang on in there and with the help and advice of my fellow incurables you will have many happy days to enjoy as you move forward.
Hello Caitlin2020,
I was so touched by your post as I could recognise many of the reactions you have been getting. I think you are right, it is really difficult for loved ones to have the slightest inkling of what it is like with this prognosis. People seriously don't know how to react or to do what they think is best. I've had a mixed reaction from my tribe. Everything from being really, really helpful and asking when appointments are so they can give me a lift to completely stopping all communication once I told them my cancer had returned. It's bewildering.
I'm still blown away by friends and acquaintances saying how well I look or even comment how healthy I seem. Obviously there is a preconceived stereotype of how a cancer patient should look, especially a terminal one. It's not helped by the fact that us patients can flicker from really poorly one minute to managing a short walk the next.
I think you are doing the right thing creating ground rules for your family and friends. Making everything on your terms is really important. You need to be able to feel that what you do is in your control and events can be cancelled at the last minute without people feeling hurt or offended. It just piles on the pressure to the person who is ill. I think people are doing what they think is best but really they should ask you what you think is best.
You're not alone either
Fish 
x
Hi J,
How spot on are you! I call them my children, but they're adults. Typical Mom. 
There is no other way, but our own way, and this will differ from person to person. It's the only way to feel you have a modicum of control. I have searched high and low for a sounding board. Even counsellors don't understand at times.My children are used to having a strong Mom, so yes, I agree, it is denial, at least that's what I believe. Maybe I've been trying to force the issue, but lately I am falling ill a lot, so there's really no need for me to do this anymore. At first I felt so rejected and unloved. I couldn't comprehend why anyone would be like that. I do now. They're scared, terrified, it's as simple as that. Sometimes, we have to allow ourselves just be whatever way we are, and more importantly, to allow others into that world so they can see too. I'm not good at that. Been trying to protect everyone, bar myself. What an emotional rollercoaster this is. Thank you so much. I wish you a lovely evening. xx
