Advise? I'm not ready

Hello Pat051, I’m sorry to read about your position, I’m hoping that writing it down has given yourself some clarity about what you want to do, what your next step is.

I remember how hard it was for me hearing the words incurable and someone telling me I had less than 12 months. No one told me to get my affairs in order though, but actually I did do my will and power of attorney at that time as it seemed good to focus on the things I could control and make easier, as I had not started treatment and knew treatment didn’t work for everyone. I didn’t get to a stage of planning a funeral, (that’s interesting I didn’t say my funeral, I guess I wasn’t ready then and I’m sure not ready now). Part of that was because I felt a funeral was for family to say goodbye to me how they wanted to rather than for me to plan a goodbye to others. My metastatic melanoma diagnosis was in 2015, and my experience is in my profile, I have not had the spread that you have had and I’m not sure what I can say to help.

Should you get a second opinion?  how do you stay strong for your family? How do you stay strong for yourself? What should you do? I think they are all answers only you can work out.

You mention that the drs were confident in your treatment until recently, but you haven’t said which treatment(s) you’ve had. You say, what they want to do is not for treatment but rather an experiment, I’m not sure what you mean by that as you haven’t said what the next plan is.

 I’m thinking that perhaps you have been on ipi nivo, and now that there has been a further spread the plan could be continue on the same treatment for a bit longer, stop treatment and deteriorate at an unknown speed, or to find out if there is another treatment, perhaps a clinical trial, which again may or may not be successful. 

I had jitters when I started Dabrafenib in 2015, not knowing if it would work, left despondent 9 months later when a scan showed it was no longer working, but also full of hope and apprehension when I started Pembrolizumab. I'm thinking that you are feeling that raw mix of emotion and need a bit of time to talk or write through it before you feel happy with your decision. 

My thoughts are

• the Macmillan support line 0808 808 0000 might help you talk it through.
• the Living with incurable cancer forum - patients only has people with various cancers who have experience of coming to terms with their diagnosis and changing treatments and starting clinical trials. I’ve been in but also quiet in that group for many years and have experienced members getting to the last treatment stopping and their encouraging words are still there for people to look back on as well as the support of those going through it, so that group is an option for you.
• your own team can recap what they are proposing and why, to get things straight for you, you can call them inbetween booked appointments when you have further questions, they also have a remit for psychology support. I had counselling arranged through my GP.

I dont know if what I’ve said is a help or a hindrance or if anyone else can add something from their own experience. I’ve just taken a long time to say I’m sorry for what your going through, I can imagine some of what you are feeling, and hope you work things through soon, but you will work things through.

Hi Pat051,

I am on Xgeva injections for bone mets, and was offered palliative radiation if I have pain, which I don't have, so maybe you could ask your doctors about these treatments or a clinical trial. 

Because I feel good, its too easy for me to tell you to keep on a treatment. However, I had an experience with my father who was 93, with a different condition, who chose his time to pass. He was not willing to live a debilitated life and at his age I think his doctors agreed it was his "out". But you are young with the pain making you feel old.  Your family should respect your wishes but please listen to them and take their support. End of life is part of life and we've never done this before. I wish you the grace as you walk your path. I'm right behind you!

Love, Cindy