Accepting the end is near

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It’s probably great that there aren’t too many recent posts here. It means people are living with or being cured more frequently than in previous years. However for those of us who are sailing off into the sunset it seems an even lonelier little boat to be on. 
I was diagnosed Oct 22 and it was a total shock. l was 55 had just moved across the country, from Brixton, South London to Scarborough, North Yorkshire. I had just brought a big house ready to start a huge renovation project with a 5 year plan to take me to early retirement at 60. Instead l was told l had stage 4 anal cancer. What followed was a stoma then 5 months of radiation and chemo the aim being to shrink the tumor prior to an operation with the aim being to cure me. Unfortunately it was not be the disease had spread to my liver 6 months of weekly chemotherapy therapy followed, but again the results were not what was hoped for and the lymph nodes around my liver were now infected. A last ditch effort was made in March to try immunotherapy with only a 1 in 4 chance of success. Wednesday 3rd of July treatment stopped and l was told the tumor in my liver had tripled in size. I now only have weeks possibly months to live.

l thought l might freak out, but l am surprisingly calm,  quiet accepting and relaxed about it all. Unfortunately everyone around me is not handling it well at all. They all appear to be in denial and this is making it really hard for me. However l am coming round to the idea that helping those around me begin to feel how l do about it all is the last little job l have to do before l shuffle off this mortal coil. 
l would love to hear from anyone else going through this last stage of their cancercoaster ride or the loved ones of someone who have just died. Any advice or simple reflections on their experiences would be really appreciated. 
kindest Regards 

simon

  • Hi Simon,

    It’s Megan here from Macmillan’s Online Community team. I saw your post and wanted to offer some support whilst you are waiting for other group members to reply. I’m sorry to read what you’re going through and how the reactions of those around you are affecting you. It can be an emotional time for you and your loved ones, so I am glad you are reaching out for some support.

    I would like to share some resources that may be helpful for you to share with your loved ones alongside making sure you have access to additional support.

    There is our End of life guide that is for anyone who may be approaching the end of their life. It includes information about coping with the news and the reactions of others, and how you can put your feelings into words.

    Additionally, the end of life information on the Macmillan website includes guidance for managing relationships, preparing a child for loss, and sorting out your affairs. There are different categories which you can access by clicking here.

    There is also information for people caring for someone nearing the end of life on our supporting a loved one who has incurable cancer page. You are welcome to share it with your family and friends if you feel they need some support.

    We also publish blogs on a range of topics in our Community News Blog. There is a ‘Supporting someone section which may be helpful for your family to look especially our Anticipatory grief blog.

    Please remember Simon that alongside posting here on the Community, you may benefit from having a chat with our Support Line teams as our support advisers can offer emotional support and practical guidance. Your family is also welcome to contact the Support Line teams as it’s a confidential space for everyone effected by cancer to access support.

    You can chat with the support teams here at Macmillan by posting in our Ask an Expert section on the Community from Monday to Friday, or by contacting the Macmillan Support Line 7 days a week from 8 am to 8 pm. To contact the Support Line please call 0808 808 00 00, send an email or use live webchat during the opening hours.

    I do hope this information can be helpful to you and your family and if you need any further support, please use the contact detail mentioned above or email community@macmillan.org.uk.

    Best wishes


    Best wishes, 

    Megan
    Macmillan's Online Community team

  • Note from Community team - post moved from inactive forum. 

  • I stumbled across this post.  I couldn't pass by without noting the eloquence.  Acceptance is a key part as you articulate so well.  I hope others around you can reach that point too, because it must be a burden you can do without.   I have no relevant experience or insights to share.  Sending you best wishes. 

  • Hello Simon

    As Mmum has said, reaching an acceptance of your situation is  key to having a peaceful and calm 'journey' on your cancercoaster ride. Although all of us will have to face this (we are not immortal!) even in this forum, few people post about end-of-life prospects, or their own death. It is very hard to be open and honest with each other, because we don't want to offend, or hurt others' feelings. I wish there was a separate forum for those of us who are at this 'end of life' stage.

    I reached an acceptance of my own incurable diagnosis quite quickly, but, like you, those people around me haven't reached that stage yet, and try to deny that my future is limited. It does make it very difficult to hold conversations with my loved ones, and I too get frustrated, and feel I can't fully express myself with them.

    It also means I can't plan fully for the time ahead, as I need those around me to respect my wishes concerning treatment, palliative care, nursing at home etc. I have a clear idea of how I would like my future to pan out, but this needs others to agree!

    I do think that having paperwork in place, clearly stating your wishes, is a good place to start a dialogue with family and friends. Even the act of writing things down has helped me to clarify my thoughts and feelings.

    If it would help you to have conversations about this, feel free to 'friend' me so that we can private message each other.

    I do hope you can go forward Simon feeling calm, accepting and peaceful, and that you do help those around you to reach this too. 

    Best wishes 

    Kate 

  • Hi Scoo33 I am so sorry to hear this news that words dont really cut it  or  make it any easier. What I can say is acceptance makes the whole process much more appealing. We are all going the same way and it's just a matter of time. I was told in January that I am incurable but have numerous sites and am brown bread. This has now changed to not toast yet apparently but any hope is better than no hope imho. I think being content in your mind helps and you sound like you are there if that makes sense. When I was told I made plans straight away doing my Will and leaving my body for medical research , So no funeral BS ,They can have a party, holiday, meal whatever they want I am not bothered its their choice. I have my scan on Sunday morning and as you know things can change like flicking a switch. My brother in law has the same thing and told me he is terminal but  fortunately in remission at the minute. He told me to read a book by Liam Ryan Cancer 4 Me 5 After extra time. Which I am half way through but he had a 5 % chance or less to survival so my way of thinking is to be positive and if I am going it's not going to be without a fight to the end. Acceptance is one thing , Surrender is another , You can only do your best  Regards Minmax     

  • Hi Simon,

    I too am accepting of what lies ahead and with that acceptance, for me at least, has come empowerment. I have taken control of my dying/death so I go on my terms and this has necessitated getting those I love and care for on-side. Can’t really say that was a defined process but it probably helped that my wife worked in wills and probate. Your loved ones will always wonder how life is going to be without you but ensuring all the legal and financial stuff is sorted can only ever be a good first step.

    With my friends I have never shied away from the reality of my situation; at times probably sharing more than some of them were comfortable with but it does mean they have had to confront my reality too. In that regard I suppose you might say I have gained their acceptance through ‘force’, although the friendships remain strong.

    Lastly, and this is something I have learned along the way, it really is good to talk be that as a family, in a support group or with professionals. With dialogue acceptance will, hopefully, follow.

    All the best.

    Maninbath

  • I’m afraid I have no experience or anything to help you but I wanted to 
    Thank you for your post . I have just returned from the GP surgery after asking him to put a DNR in place and also the instructions about my end of life care. My daughter came with me as I wanted to spare my husband who is my rock and agrees with my decisions just felt it easier if he wasn’t there . 
    I am finding it hard to accept what is the inevitable outcome even though at the moment I am in active treatment which is palliative chemo . With a very poor prognosis . Your post was so informative and helpful and I will read it again and probably again . 

    I have three grown up children two are getting their heads around the situation my youngest son  is struggling. I can tell he doesn’t want to talk about it so we don’t. I worry about him but he has a very supportive wife who I know understands him and will be there for him . 
    I will keep you in my thoughts together with those around you and wish you well on the journey that we will all take . 

  • Hi Hilo13

    I am in a similar situation to you....my husband is 15 years older than me. We haven't been married very long. I think my husband was expecting that I would be looking after him in future years, and that he would be the first to 'go'. When I got my incurable diagnosis out of the blue, it took him completely by surprise, and even after 2 years, he still hasn't fully accepted the situation. He finds it really hard to talk about my prognosis, and wants to believe that I will somehow recover. This makes it almost impossible to have conversations with him about my future care, and wishes.

    Like you, I'm in the process of filling in forms to go in my medical notes, though I still need to discuss these with my husband. 

    Being able to communicate with your loved ones is so important. I hope you are able to have some supportive conversations with your younger son at some point, when he is ready.

    I wish you well on your journey too!

    best wishes

    Kate

  • Just to let you know my husband is 80 11 years older than me we have been married for 31 years ( if I make it to December) we always presumed that I would look after him . But we don’t get to call the shots will keep you in my thoughts . Chris 

  • I hope it goes peacefully and as painlessly as possible. Facing reality helps me. In fact my recent oncologist thinks I'll hang around a while but the previous one pretty much said goodbye (I'm assuming you've checked it all out). I find friends and family are mostly in denial (or with some weird ones, in competition!). My dear late husband died from cancer just a few years ago. I was distraught but his calm, philosophical approach made all of it easier and I treasure those months when we got more time together. Getting things sorted out calms me but I appreciate I'm not yet quite in your position. Thank you for posting. It helps us all face reality calmly.