Trying to hold it together.

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Hi all

I’m new to the forum and have pretty much done everything I can to work out how to handle my emotions but I am mentally exhausted.

My wife has stage 4 bowel cancer for the second time. Sadly this time there is no curative care and she has reacted badly to the chemo routine so the palliative care is also significantly impacted. She has now been registered disabled due to the effects of the chemotherapy I am her sole carer and also work full time. (We have no bubble)

I was coping up until the new year when I was offered a promotion at work. We lost 2 out of 6 people in the department and I was told that there were no options to recruit so the 4 of us that were left would have to cover 1 additional site 200 miles away. I repeatedly asked for 1 person to support but nothing was provided. My wife’s condition deteriorated in January and after speaking with her about it, we agreed I would not be able to cope with everything and maintain my health (physical and mental) so I declined the offer.  This was when the problems begun.

Within days, I was being excluded from discussions and while the words “what can we do to help” were spoken, the actual support has been non existent.

Discussions about reducing my department further have been had without my input, a new manager with less skills and experience than me has been recruited and consultants brought is to offer the expertise support that I could not get (so the steps to replace me have already started) The situation has continued to deteriorate to the level where I feel I have been completely ostracised and the atmosphere is getting toxic.

This came to a head on Friday when the site leader asked how I was. At the time, my wife was back in hospital and I was talking on chat to the Macmillan support team. I was asked what can we do to help to which I replied you are the problem. You have given no help and no support at all.

I walked out before I lashed out.

My wife has no idea how much I’m struggling. It would destroy her if she knew what I was going through. I have spoken to MIND as my head is out of my control now. I’m scared.

Please talk to me.

  • Hi BlueDane, I am so sorry to hear about your wife and your struggle with work. I cannot offer a solution but only my heartfelt support in the form of somebody listening. My husband has only recently been diagnosed with pancreatic cancer which is inoperable and I’ve only just stopped constantly crying. You sound very brave and have good communication between you and your wife. Can MacMillan advise you on work and any benefits you may be eligible for. 

  • Hey BlueDane,

    Unfortunately, you're caught where a lot of carers have been caught; your heart says "home", your head says "work" and your work says "work harder". As an outside, I can't offer you any advice other than do what's best for your wife and for you. 

    When you say "My wife has no idea how much I’m struggling. It would destroy her if she knew what I was going through.". Like you, I thought I had to keep everything from Margaret. Where it all went pear shaped was when I reached my physical and emotional limits. When Marg asked why I hadn't said anything before, my only answer was that I was trying to protect her.

    In her inimitable fashion, she gave me the boot up the backside I obviously needed. She said, "I need caring, not protecting. WE are in this mess together, just like we have been in everything else".

    And she was right (as usual). Throughout our married lives, we had discussed everything. No trouble was tackled alone and no joy was not shared.

    You may have the worlds greatest team of oncologists, doctors, specialists and nurses, but the two most important people in this fight are you and your wife.

    Don't underestimate her strength and don't overestimate yours.

    The woman you love is still in there. Talk to her.

    Hang in there mate.

    Peace,
    Ewen :-)

    The day after your journey ends, the sun will still rise.
    As will you.
  • Hi Bluedane,

    I can't really give you any advice except for saying that what we often find is that patients know the situation they and their families are in and don't say anything because they want to protect them, and the family members don't say anything because they want to protect the patients. But I think it's like Ewen says: She is there, you are a team, it's the two of you in this, talk to her. I am sure she knows that you are struggling - and if not, then it is important to let her know. I would like to recommend a book here which I have read over and over in the process of becoming a death doula. The book is by Kathryn Mannix and it is called "With the end in mind".

    Love

    Mel

    I don't like the term "moving on" because it sounds to me like we are leaving our loved ones and the life we had with them behind. I like the term "moving forward" as it implies that, while life goes on, our loved ones are still with us in our hearts and minds. 

  • hi @blueDane - I feel a total connection - I recognize colleagues who may feel they are trying to protect you very much like you feel you may have been trying to protect your wife. Been there done that.

    Don't worry Steve - his wife has cancer - let's take the pressure off Steve - well it absolutely sucks and I seriously discussed at one point walking away from work and going for a constructive dismissal/indirect disability discrimination case - my boss even said he would not blame me if I did.

    My main advice would be ring the helpline and ask to talk to the work support service Talk to your HR department or (if you have it) your employee support service about what you need but also what you can do.

    You are clearly a great asset to your company and it would be a big loss to them if you were to go, but they are hurting a little too as they did not manage to get what they wanted and they are struggling with how to help.

    You might also like to talk to carers uk and their work and career services. All too often employers look at carers and disabilities and look at what they cannot do - we know what we cannot do - but we can also gain strength and bring talent to the workplace.

    I have talked at my work about how I cope with my wife's diagnosis and every thing else going on in my life - my colleagues call me inspirational.

    We can do this - as they say

    Sometimes in our lives
    We all have pain
    We all have sorrow
    But if we are wise
    We know that there's always tomorrow
    Lean on me
    When you're not strong
    And I'll be your friend
    I'll help you carry on...
    For it won't be long
    Till I'm gonna need somebody to lean on
    Please swallow your pride
    If I have things you need to borrow
    For no one can fill
    Those of your needs that you won't let show
    <<hugs>>
    Steve

    Community Champion Badge

  • Thank you all for your kind words 

    a year in lockdown makes the world a very lonely place. Work was my escape, the 1 place I felt I could make a positive impact. I am also considering the constructive route (disability via association) 

    right now, I just take 1 day at a time a try to achieve something.