what do you wish someone told you at the beginning?

hi 

the little i know is that my wife was called into hospital 10 days ago and told she had stage 4 cancer with about 3 months to live. im finding little bits out each day as shes starting to process stuff. 

so the first evening on my own and i find myself signing up here. glancing thru a few posts the compassion, humanity and mutual support is very clear - and already comforting in dealing with my current isolation (i ve not told anybody  - what do i say when the answer to pretty much ever question would be 'i dont know'?), so thanks.

its also clear that some people have been at this for quite a while. to you much respect and a question; given what you now know, what you have been through, what you face; given that lot, what do you wish someone had told you when you first heard that the love of your life has cancer?

thanks            

  • Oh I’m so very sorry to hear about your wife and her prognosis.  That is so very hard and such a lot of pain to get your head around.  I don’t know what advice might be helpful but I can dump a lot of thoughts here.  First I would recommend going to her appointments with her (in person if they let you with current restrictions, or at least be on speakerphone.). Two listeners is better than one, especially when your minds will be reeling.  Bring a notebook and take notes because you won’t remember what was said.  Also write your questions down before the appointments because otherwise they all seem to run out of your head.  It is hard to get the right demeanour- I find most helpful is to mimick the emotions of my husband, with perhaps just a slight bend towards the positive.  When he is sad and down I let him talk and don’t try to say it will all be ok.  If he says he is angry and it isn’t fair, I agree with him.  When he has a good day I try to stay cheerful too.  However you need to take care of your emotions too.  I found when I was away from my husband I would randomly burst into tears (all the pent-up ones I had held in).  Be ready to be her advocate with healthcare, friends and relatives.  Don’t be afraid to tell people exactly what is helpful (and what is not helpful) for her and for you.  Three months is a tragic prognosis and also very uncertain.  One friend of ours was given 2 months and sadly passed away in 4 days.  A neighbour’s brother was given 3 months and is still going strong a year later.  We’ve had two close friends die in hospice… the hospice units are brilliant for both patients and family in coming to terms with their prognosis and making the most of the remaining time.  I’m not an expert but people with a terminal diagnosis often want to hear their life has made a difference, and that they will be remembered.  Several people have found their relative/spouse with cancer has become bitter and angry even with the people they love most.  If you don’t experience that, that’s great then, but if you do know that it is more common than you might expect and there is help and sympathy here.  I see a therapist and that has been very helpful.  All my sympathy and best wishes to you for what lies ahead.

  • I’m sorry you find yourself here and that your wife has received such a difficult diagnosis.
    My husband has stage 4 lung cancer (inoperable and incurable) and my honest answer to your question is I wish someone had told me it was all a mistake. But that wasn’t going to happen but now I wish someone had said “This isn’t the life and future you planned but it is important to make the very most of the time you have and do things together and with your family”

    I say this because we spent too much time being scared to do anything and allowed our life to become ruled by his treatment regime. So far his treatment seems to be helping to slow the growth and spread of the cancer and we are now “doing” things to make the best of whatever time we have together, they may be simple things like planning a “movie” night at home or a weekend away (within an hour or so of home so it’s not too far to travel). The treatments now are so much better and I sincerely hope your wife is able to have some treatment to help her gain some time and that you both make the most of that time together. 
    I have found this community invaluable for support, sharing and caring. 
    Grassn

  • Hi Cah

    i am so sorry you are in this situation...... life is so cruel with no rhyme or reason ......as all of us on here can vouch for

    the one thing I wish someone had told me....... the consultant had made a mistake........ but I suppose that goes for all of us

    stay strong....... when you lose the love of your life at any time must be devasting but to lose them to this word cancer ...... no words to describe it ......plans just ‘thrown aside’ in a heart beat

    Remember all of us here share your pain and do not hesitate to use this community spirit to somehow give you the strength you need 

    Take care

    Bess

  • Hi Cah

    a warm welcome to the community. So sorry to hear about your wife's diagnosis. Nothing prepares you for hearing that news.

    My husband was diagnosed with a stage 4 brain tumour in early Sept 2020. His diagnosis was terminal from the start. Two days before his surgery to debulk the tumour, he had a seizure and to be brutally honest, the man I knew disappeared then. He has never been quite the same person. The craniotomy also unavoidably resulted in further changes. 

    At first he didn't want folk to know about his diagnosis but slowly he told his circle of friends. He had me sworn to secrecy. Then the night before his op, he posted a lengthy message on his social media.SO unlike him as he is no fan of FB! I've kept it all off my own social media as I feel I have told all the friends who need to know just now face to face or via private message.  It definitely takes time to get your head round the situation and there's no right or wrong length of time for it to take. When I have spoken to friends and work colleagues I've been open and honest. That's something other people can struggle to deal with because they don't know how to respond. 

    Eighteen months down the line, those early days feel like a lifetime ago. He was given 12-15 months so we are currently living in limbo. My perception of our experience of the NHS isn't a positive one. We've been passed from pillar to post- 10 hospitals, 4 separate oncologists and no consistency - so I do feel out on a limb at times. That's where this community has been fantastic -there's always been someone around on here to offer support.

    I've accepted out fate but I wish that someone had explained how hard this rollercoaster ride is on the family. I wish someone had let me know just how patient I would need to be. I wish someone could explain to me what to expect. I guess I can sum it up  as I wish there had been someone there to hold my hand. 

    Everyone's journey is different. Each situation and relationship unique. As an indie author, I have been working on a  "thing" (blog/book) that I hope to complete once this journey is over and I've found my feet that will hopefully help others with how to cope with this journey and also raise some funds for charity. It's not  a story I would want to earn a penny from. Time will tell if I find the courage and strength to complete it. 

    It’s always good to talk so please remember you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    For now, I'm sending you both a huge virtual hug. Stay strong. Be patient and hold onto your sense of humour. (Dark humour has got us through a few dark days)

    love n hugs

    Wee me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi cah it's so sad to hear another person is facing the heartbreak this disease brings.

    I wish I had been told to enjoy every minute. Now that my husband and I are enjoying borrowed time I wish I hadn't fussed about stupid things and just and relaxed every moment realising I may soon be begging for that time again. 

    Much strength and courage to you and reach out for help. You can't do this on your own x

  • Hi cah,

    Like everyone here, I am sorry to hear your news and agree with all the advice given by others.  For myself, my husband was diagnosed with prostate cancer 12 years ago and after treatments had a good quality of life and I was able to keep him positive throughout.  However, 2 years ago the cancer had advanced into his bones and in the time since then he has had all available treatments and is now palliative care and terminal.  

    I wish when he received his new diagnosis 2 years ago that someone had told me the person that I loved may disappear, and that it is important to build a support network for us both.  I wish someone had told me how hard it would be to look after my husband in his darkest days (he became depressed immediately after his diagnosis and no amount of medication or counselling has helped him with this); how difficult it is to help someone when they are pushing you away; how scared and frightened my husband would feel.  Above all, I wish someone had been able to tell me that it's perfectly natural to cry, to feel anger and resentment, to despair, to feel guilty, to grieve for someone who is still alive, and every other emotion in between.

    You will no doubt experience many of these feeling cah, as has every other carer on this forum, but I hope you can take some time out for yourself and also keep in touch on the forum.  There are many people here who will understand exactly what you and your wife are going through and are always willing to lend an ear.

  • Gosh my heart goes out to all of you who have responded to this post. The advice and ideas given have resonated with me too. Cah, I am so so sorry for your situation. What cruel news to process. As you will have read, everyone here are so supportive of each other. Caring for the person who has the other half of your heart while they become iller and slip further away from you is a terrible kind of torture. Especially when you have no one around you to confide in. When my partner first had his diagnosis he didn't tell anyone for a long time and I didn't feel right to without his family knowing. It was so isolating but macmillan was here for me every step of the way, just to listen when all I wanted to do was cry and curse, to offer good support and advice when I was ready.

    Sadly we all know there is nothing anyone can say to make it better but we are all here for you and having a network of people who do actually understand the terrible situation we are all in can sometimes ease your soul just for a moment. 

    Keep strong when you can, reach out when you need and treasure all the small joys you still can share. 

    Fae