Cancer

Mrs L had her oncology appointment today. The news was much as we expected – her cancer is aggressive and resistant to treatment. I have watched her health fall off a cliff pretty much since November. She is weakening by the day and beyond palliative care and pain management, that’s all we have left. Indeed, the consultation seemed to be more about how she felt and what drugs they could giver her rather than the details of the scan.

She had asked the hospital transport to take the both of us to the hospital and when they arrived, they weren’t expecting the two of us. We negotiated with them and I helped her to the ambulance. After waiting around for the usual late running, we were told that we would be collected at half past five. At  six, we enquired again only to be told we would have to wait until half past eight… Had we not chased, we would have not been told that. So we got a taxi and paid through the nose to get home.

The misery of the cancer is bad enough, but this indifferent incompetence just adds to the overall agony of the process. We have spent decades working and paying into the system. Now, when we need it, we find ourselves underwhelmed by the service we receive.

Colour me unimpressed. Right now, the world seems to be a bleak place indeed.

36 Comments

  1. I have been there and done that and I am full of sympathy. In your circumstances people can often seem indifferent. I can only suggest that you focus on each other, rally your true friends (this is when you’ll find out who they are) and ignore a world that seems uncaring. Good luck.

  2. I’m so sorry to learn of your personal tragedy. I hope the end can be as painless and dignified as possible

  3. but this indifferent incompetence just adds to the overall agony of the process.

    As so many others of her commentators I followed (and witnessed) some of the misery the NHS put Anna Raccoon through:

    so she was taken by ‘urgent’ ambulance to the local hospice: “Priscilla Bacon” in Norwich, a 30 minute journey with blue light.

    I’ll say this publicly and I mean it; I truly admire G for not punching the 2 jobsworths who felt they couldn’t carry the Raccoon up a garden step without not only an additional paramedic team in attendance but a health and safety assessment too. 4 bloody hours it took to get a dying woman to the hospice. If I had been G the sentence “’ere you can’t talk to us like that!” would have been followed by the sound of…let’s just leave it there (for legal reasons) and say that G is a better man than me.

    I hope I’m wrong, truly I do, but chances are you will have to fight for the simplest things, for the merest hint of compassion, for your wife.I wish you the strength required.

  4. @LR,

    Sorry to hear that, I have prayed for you both.

    The misery of the cancer is bad enough, but this indifferent incompetence just adds to the overall agony of the process. We have spent decades working and paying into the system. Now, when we need it, we find ourselves underwhelmed by the service we receive.

    Sums up the “envy of the world” NHS. Some employees do care, too many inc nurses etc are box-tickers.

    When you have time, consider a living will/dnr for MrsLR.

    God bless

    P

  5. So sorry. I hope that your wife is given the treatment she needs to be as comfortable as possible and that the clinicians treating her are compassionate. As Tom says, ask your friends for support, true friends will rally.

  6. I suspect there are many like me who can’t think of anything adequate to say but are thinking of you and Mrs L.

  7. So sorry to hear the news. Can’t add anything to what Tom wrote. Remember to take care of yourself to be able to support your wife.

  8. Dreadful – we’ve been through it and the medical staff we encountered varied enormously. Some knew exactly what to do and say in all circumstances, others should have chosen a different career.

    I hope you get some respite from the decline.

  9. Very sorry to read this, Longrider. Your lady will be in my prayers and I hope she has a peaceful passing.

    As for ‘the envy of the world’ — I think that is a topic best left for another time.

    Best wishes,

    opsimath

  10. So sorry to hear your dreadful news, Longrider.

    Having watched our daughter’s mother-in-law succumb to cancer a year or so back, I’d offer the advice that however Mrs L wants things to play out, those who love her should do all they can to play things her way without offering alternatives or advice.

    To add to the discussion. Our daughter-in-law down in Brisbane (33 years old and mother to a 9 month old baby girl) is having her third set of chemo for colon cancer, having had her large intestine and part of her liver removed in November less than two weeks after the diagnosis. She and our son have been very happy with the care she has received so far. We are all currently hoping for a positive outcome to the treatment.

  11. Hopefuly the bleakness will be tempered and perhaps lightened a bit by knowing we are all with your wife and you on this sad occassion.
    Try to take the time you both have left together to make some very positive memories.

  12. I’m so very, very sorry to hear this. It’s unconscionable that the uncaring bureaucracy of the NHS makes people’s bad situation just that little bit worse… ?

    I hope that the time she has left with you and the cats is as comfortable as modern pharmaceuticals can make it. MacMillan nurses, I hear, are worth their weight in gold.

  13. Thankyou all. I understand that people don’t know what to say in these situations and I’m no different. I’m merely using this space to vent. I’ll go crazy if I don’t.

    • No, vent all you like. There are no words to offer. No empty soothing platitudes for such tough times. All I can offer is this; hang in there, we’re rooting for you.

      Fingers, toes, nostrils and eyes crossed for you both. Good luck.

    • It’s natural to rage against cancer and rage needs to be expressed. Many of us here will empathise as well as sympathise with you.

    • Venting is good.
      Everyone here is on your side and on your wife’s side. We are the friends you’ve probably never met. We are here for you to lean on, to vent to and give you whatever support we can.
      We’ll always be here.
      Stay strong.

  14. LR, pardon me for asking, but which part of the country are you in? I only ask because we used to transport my mother around in the car (and we have a folding wheelchair), and we learned to cope with her oxygen flask and the logistics of transfer to and from the car. Amateurs yes, but smart amateurs. I’d hate to find out later that you were right here in our neighbourhood all along and we didn’t offer any practical help.

  15. {{{L and Mrs. L}}}

    The most important thing of course is to be with her when she needs you as there’s nothing worse than to be medically helpless and dependent upon strangers who may or may not treat you well. You become afraid to ask them for all the little but important things you need because you’re so terrified that they’ll become annoyed with you and won’t respond at some point when truly desperately need them. But it’s also important that when you or others are with her that she doesn’t feel that she needs to “entertain” you: she needs to know that she can sleep and that you’ll be there content and reading a book just in case she suddenly wakes and needs you. Meanwhile, if you can show staff that you’re quiet and a help rather than a hindrance they’ll be more likely to bend the rules and let you stay at times when visitors might not normally be allowed.

    And the next most important thing, as others have mentioned, is to make sure that she’s in charge of whatever decisions about her care and her drugs need to be made. She may need you to push the docs/aides as her advocate, but she needs to feel confident that the decisions will be hers.

    – Michael

  16. I am so sorry to hear this, LR, and, like many others, I seek wise and clever words of consolation that just don’t come (or don’t come out right). Thinking of you both. Stay strong.

  17. I have no wise or clever words for you, but i wish your lady wife and your good self all the best from the bottom of my heart.

  18. Having been there more than once with close family members, my sincere sympathy and thoughts are with you both.

  19. Been there, done that. My very best wishes to you both. (And, as someone else has said, remember to take care of yourself.)

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