For people living with incurable cancer only
This group is aimed only at people who have had an incurable diagnosis themselves, as we have had feedback that they would like a safe space to share their feelings openly among themselves.
If you have a loved one with incurable cancer, you are very welcome on the Online Community as a whole, but we would ask that you respect the wishes of people with incurable cancer and not post in this particular group. Instead, you will find really good support in the Carers group, the relevant cancer type group and the supporting someone with incurable cancer group.
Hi Tamencio and welcome to this group! I am so sorry you find yourself being a carer and a patient, life just isn't fair! It must seem as if everything is against you at the moment but there's always hope and a lot of the people in this very group will testify to that! It's a roller coaster at the start but once you have started your treatment and you get into a routine, I hope things will settle down for you and things won't look as bad as they do now! There are plenty here past their "sell by date" of which I am one.. We are all here to help and support one another so feel free to ask anything, any time, there's usually someone here, day and night! It's not an easy road but try to take it a step at a time, day by day at a time and I do hope you will feel less scared!
Love Annette x
Hi Ellie, As I read through our welcoming comments and advice and kind words, I wondered how daunting it might feel to see words like terminal and will and writing letters and travel insurance. I remember when I was first diagnosed - similar to you in that my breast cancer is in my spine and last year moved to my liver - that anytime anyone used these words or gave me suggestions my insides lurched and I felt so very panicky and destabilised. Many of us have been on this journey for a few years. I was told I had a year and I am here 22 months down the track very well and not looking one iota like I have cancer. We've gone through the panic and the displacement feelings and the horrid weight of grief. We go back there still some days. But. We've being doing this for a while and we've found ways of learning to manage with an incurable disease. Over time. With friends. With counselling. With meditation. With thoughts and processes. And with grief. I just wanted really to sit next to you and quietly say I'm sorry you're here, and I'm glad you are. Go slowly. Let yourself take one day at a time. Every feeling and every emotion is real and expected and held here by those of us who have been exactly where you are. I hope you find the emotional energy to reach out to maybe a MacMillan counsellor or go and see one. It has made all the difference to me, and even more so in the beginning.
Hello Robyn. Thank you for your reply. I have read your profile and saw that you were on Palbociclib. I was as well for a year, paid for by my insurance company who then withdrew the treatment a couple of months ago and wont pay for any more, although they are still happy to take payment each month. I am currently on Exemestane. I had a blood test done yesterday and will find out the result of that next week and will see the Consultant next month. She was talking over the phone of putting on Tamoxifen which I had been on for 5 years after my initial breast cancer which at the time was aggressive and oral chemo. It was held at bay for 8 years. My biggest fear that it would return happened but i was told that bone cancer was treatable but not curable. I made my peace with that and a had a good year until now. I have according to the Consultant a slight spread and she wants to find out if its from the breast cancer or something new. I dont know how long I have and I dont want know. I am so frightened at what the future holds that I find it hare to live in the day. My husband says I dont smile or laugh anymore. It's hard on him and i wish i could have a mind shift but the thoughts seem to consume my every waking moment. Keep well.
Ellie I am so sorry it is having such a consuming effect on you and hope that you will find a release strategy that helps you. I have found being open about it with my friends and family to the point where we joke about things has helped. Also writing things down and then filing it away so you do not dwell on it helps me. My husband has learnt that words, which are hard to find anyway, are often not helpful but a nice meal out or arranging a visitor helps. His secret weapon is a text to my daughter and then my grand children ring me. I know some people find massage or music helps. My strongest ally is my faith and prayer and the love of others.
I was surprised to here the Palbociclib was stopped I had that for a while but it did not agree with me and I went onto Ribociclib which at the lowest dose was working great. However I am now being told that will be stopped due to recent events which is another story.
I find it is very difficult to get the medics to tell you anything and in my experience they seem to very seldom talk to each other so the information is often contradictory.
I think it is important to feel you are on the best medication possible and I know this involves costs but I think sometimes it is false economy as when I am well all I need is the meds and nothing else when I get poorly I need hospital care. Also why should we be fighting for quite basic drugs if they are very beneficial.
I am going to try to find out if the drugs actually were working as I was told they were and if so I will try to fight to get them reinstated.
I am profoundly moved by your words. Thank you
What is a community champ?
Thank you it makes me feel so much better and less alone. I am trying to be a mum to our son, whose father passed away in June last year. We were such a happy little family then from 2017 until now everything has been turned on it’s head. I am trying to keep a routine in place for him as he has just started high. School. I didn’t expect to be a mum. I thought that boat had sailed. I met my husband when I was 44 and he was 39. I have been blessed having him in my life, he was my best mate and biggest cheerleader. I love my son so much and want us to enjoy our time together.
I had a very tough childhood and choose to work for thirty years with vulnerable adults and children , trying to offer them the help that I did not receive when a child. I had gone through looking after my husband with pancreatic cancer, sorting everything out , working and looking after our son. I miss him terribly but thought we were beginning to see some light. I had no significant symptoms , then developed sepsis at the beginning of August and after extensive tests was told it was a stage 4 womb cancer. My chemo starts on Thursday and I am a little bit afraid. Sorry if that sounds silly. Thank you again and take care. Tamencio xxx
Tamencio, your story has stopped me and I feel quiet inside for the grief and fear you must be feeling. Nothing of what you've said sounds silly. It sounds real and heart breaking. You sound as if your life has been lived for others and now that you've nursed your loved husband I can't imagine how it felt to receive news of your own cancer. Especially when you have a son.
Often when I hear the stories of others in here I am quietened and so reminded how courageous we are, how much pain is carried when we've loved. I can't change a single thing about your life, but I can tell you that your life has been seen by another and solemnly acknowledged for what is inside it. Being afraid is so normal. I hope this community of people is a support to you with ideas and the kindness and compassion of a common journey.
Thank you Robyn
i needed to be able to talk to others in a similar place to myself. Thank you for your support, love and kindness.
with love and best wishes
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