Could there be more?

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I sat last night on the edge of the bed and tried to talk to Adam about what the doctor had said to us when we were at the hospital on Tuesday. I was hoping that he would be able to see it from another angle, to give me something to work on, or believe. I tried putting my understanding of what was said in several different ways, but all of came to the same point. “That we had been told there was nothing they would do, as they weren’t prepared to operate on me, for anything other than a total emergency, and therefore, I was on my own. It wouldn’t matter how bad things got, how much pain I was in, or anything else. They quite simply wanted me to take more and more Morphine, to try and cover the pain, until I died.” He annoyingly just kept saying the same thing, “I can see why someone might have taken what he said that way”, then went silent. Even when I pushed by saying things like, “Well, is there any other way of seeing it?” He just sat there silent, offering me nothing at all. I could come to no other conclusion than, he had also taken it that way, but was desperately trying not to say it, because if he did, he would then have to admit, what was happening.

This is where Adam and I are so different. I don’t have a problem with saying that basically, I am being left to die. My guts are being expanded every day because the nerves won’t push the stools through, it just compacts them until everything is pulled tight. It has become increasingly painful over the last 4 years since it started and like all skin, there will be a limit to how far it will stretch. If any part of it fails, well the issues of a perforated bowel, are something no one wants. It is a fact that more and more nerves ending die daily throughout me, the time will come when those in my gut, are diminished to a point that they won’t trigger enough muscles, to do anything worthwhile. But long before either of those things happen, I am going to find it increasingly hard to breathe. I already have problems thanks to the pressure from below, pushing upwards on a weakened diaphragm and lungs, which have their own issues with dying nerves. It doesn’t matter what the doctors want to do or not, I am dying. On Tuesday, they just added another way that it might happen, that I hadn’t quite grasped. So Morphine, here I come.

I had thought that Wednesday was going to be just a day. The carer was due here to give me a shower, but having got through last week, I was feeling much better about the whole thing. I haven’t exactly been thinking about their visits, but slowly, whenever I found my thoughts in their direction, I was gradually feeling calmer as the days ticked on. Even when I started laying out my clean clothes and making sure all that was needed, was on hand for her arrival, there was calmness that was totally missing from last week. I guess that our brains work on these things without us even knowing. As the day ticked on, I have to admit there was a slight apprehension that grew, but it was just slight. I kept myself busy as always, but as 4 pm arrived, so did my first attack of nerves, nothing over the top, just enough to know it was there. It wasn’t until much later when Adam came home, that I found the perfect example of what had been happening to me between 4 pm and her arrival.

Adam is the sort of person, who if he is expecting someone to call, reacts to almost every sound from the road outside, by standing and staring out the window, to see if it is them. Clearly, I’m not going to keep going back and forward, I’d be exhausted, but I still do the same sort of thing internally. So here I was, sat here, winding myself up every few minutes and being ready to head to the intercom to let her in. I waited and waited. 4:30, 5 pm, 5:30 all came and went, and no sign of her, just me getting more and more stressed. Then the front door opened, 6pm and Adam was home from work. He took one look at me and knew exactly where I was, on the point of tears. He made a phone call, but only managed to get connected to an answerphone. Adam was furious in front of me, but when at 6:30 the doorbell rang, he became his usual amiable, jovial self. Two and half hours late and there was the carer as though nothing had happened. She said that she hadn’t been told about the need to be here at 4pm, but I found that hard to believe, as Jane, the carer who was here last week, knew all about it. By that point, I was so tired, so wound up and totally unable to even think about going in the shower, help or not.

Adam eventually spoke to someone at their office on Thursday, and they too said that the stress on timing, hadn’t been passed on to them. They have also reassured him that this will not happen again and that I will be seen as near to 4pm as possible. All we can do is wait and see what happens, but right now, I’m not exactly filled with optimism.For weeks now, I have been searching for the point where life will just feel normal, not stressed, not tied up in things to do and I can just have what feels like a restful day. Somehow, I don’t see that happening anytime soon.

 

Please read my blog from 2 years ago today – 18/06/2014 – Home to Mother

Teressa called last night to let me know that she and John will be here at the beginning of August for a week. I guess we will be able to spend quite a bit of time together as unlike Christmas the rest of the family and friends in Scotland will be working. She always sounds so happy these days, not like when I would hear from her when she was married to her first husband, then she always sounded…..

26 thoughts on “Could there be more?”

  1. I’m in nearly same situation, just a different problem. A few months ago before my 16th birthday I was told that my heart failure had proceeded to another level and that there was nothing they could do to help except drugs.
    I used to find it bitterly amusing that was all they had to say about it, I mean I’ll probably die before graduation and all I get is meds? But I get now that’s it not there fault.
    The point is I haven’t really been able to find another way to look at the whole thing, but I just try to zoom on the whole at least I’m still alive thing. If you find some sort of solution to this whole thing let me know.
    I wish you the best 🙂

    Liked by 3 people

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    • Having been on the verge of death my entire life (I’m now 55) due to a persistent birth defect impacting my lungs, I accept that medicine is still more an “art” in many ways, and not an exact science.

      I’ve got a well-intentioned but idiotic lawyer telling me to sit and do nothing which might jeopardize my getting disability benefits (a guarantee of a faster road to perishing), and I’m at the point where there’s not a lot more the medical profession can do for me as I don’t like any of their choices and won’t allow a lung transplant.

      @AKA_The_Author, you have the right idea to find a whole other way to look at things. You’re alive, despite all expectations, and finding a way to take joy in your surroundings and LIVE vs. merely exist is the best goal I’ve found for keeping on. We all just need to accept that we never get enough time, and set some goals to achieve while we’re here. Take care of yourself.

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      • I know that I will accept this, just as I have accepted everything else life has thrown at me. I’m still here and I got here because I chose to live the best I can. Nothing has really changed, other than the fact I have been given another way to leave this life, it was there, I just didn’t know. 🙂

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  7. I agree, the doctors seem to think the answer is stuffing you and me with drugs. It doesn’t seem right. Amanda is a huge support, but not much she can say at this point. I hope your pain calms down at times so you can enjoy part of a day 😦

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    • It’s hard to accept in this time of so many medical advances, that so many of us land up with nothing but painkillers. If they killed the pain, then fine, but at best they bring it to a level were it is bearable.

      I guess there is little that anyone can say. I was pushing Adam in a way to see if he could find a glimmer of hope that I had missed. Now all I can do is work on accepting yet another thing I never thought I would have to face.

      Here’s to the good days, nay they still out number the bad for both of us. (((Hugs)))

      Liked by 2 people

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      • I agree, I tell my wife everday that they can do heart transplants, but nothing for the pain except make us dizzy so we sleep, but having the good days makes it worth while and I hold on to that. Hopefully, Adam will give you the support you need. I know it is very hard for the supporters and caretakers as well. ((Huge Hugs to you)))

        Liked by 1 person

  8. Hiya, could nt reply to yesterday’s blog it must have been difficult to witr but glad you did.
    Today’s reading gives me a sense of the brutality of it all. As for morphine well there should be something better in 2016, enough said on that. I ve had these problems with carers and their good deeds but the office gets in the way of rotas……many reasons why. One carer said I could ask for a print out of times and dates, as I m entitled to? I never have yet but soon will when I get regular care, hopefully, I now know they can turn up 10 or 15 mins late and some once they have good relationship with you will come early prob get your stuff set out with you, if yo want. Also the hour I get is only 50 mins for various understandable reasons. Hitches here happen. I hate reading what’s happened to you it’s plain and simply wrong where is the care, sensitivity and care. You end up so tearful and I find that if TLC and co ordination happened at least that helps in some way and that is common sense.

    Take care and sending
    love and Pamela special hugs (((Hugs)))

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    • There will always be days when carers arrive late, but two and half hours late, to me is unacceptable. Their bosses have said that in future they will be here as close to 4 pm as possible. As I said, all we can do is wait and see what the reality is. I am just at the start of this whole system, so what the truth of it is, who knows.

      You hear so much of bad, but like everything else, there has to be the good out there as well.

      Take care (((Hugs)))

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      • Yes there is defiantly good. Two and a half hours is totally unacceptable and wrong, I even fret at 10 mins late. It has left me in melt down the alot. If you get on well with your carer and thir agency is a good one and do their best do be consistent as they can be, nothing can be better. It is a wait and see but I guess you know more than too well how operations work in the job you did.. I really hope you get some rest form all this all this upheaval its terrible. I hope some laughter arrives in the end as that is the best tonic as you know. I ve only had tasters in system but about to embark on more so yes reality is key to finding out. thanks for having courage to share with the world to extent whoever reads it, the amount of followers you have is estonishing!!😀👍🏼Your blog is helpful to me sharing the negative and positive of the whole lot of chronic illness. I m glad you are assertive too and Adam working with you. (((hugs))) gently a 1000 times X

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  10. Can this be an option for you? >> http://www.ohri.ca/newsroom/11092004.asp
    It is a major experimental procedure being performed in Canada in an effort to reverse the progression of MS with patient-derived stem cells.
    I am sorry if it is not feasible or if you have already looked into it… I just truly wish there could be more done than just leave you with more drugs. **gentle hugs**

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    • At the moment it is still in the experiment stages. It may well be too late by the time it has been tried and tested enough, for it be a treatment as such. It does look incredibly hopeful for those who have been just diagnosed, or not even diagnosed yet.

      If I was offered it, I would of course say yes, but you have to be offered these things. I have already had one experiment treatment, they did knock out my immune system with chemo. 3 years of spaced out treatments. For me, even that was amazing, it gave me my life back, but it’s a one off treatment. Without it, I doubt I would still be here. 🙂

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  11. Hello,may I call you Pam?.I don’t know if this will help you but do you know that Morphine contributes to constipation in a similar way to Codiene??It might be worth a word with your Gp.Sending love and thoughts.Nancy.

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    • I am very award of that, but I don’t suffer from constipation. My stools are perfectly soft, as I explained in the second paragraph the problem is totally down to dead nerves which aren’t sending the messages to my muscles. The stools are remaining inside me far longer than is normal. The result is the few parts of me gut that are working, are trying to push forward through dead area’s. The result is they bunch up, stretching the gut and causing me huge amounts of pain. That’s why I am in danger of my guts bursting at some point, there is a limit to how far anything can stretch.

      If you go back one post, I outlined exactly what happened at the hospital this week and how it was my consultant who wants me to increase the Morphine and is happy for me to take as much as I need. There is no other options left for me.

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  12. Nothing is more heart wrenching than when a doctor tells a patient, “there’s nothing we can do,” or “there’s nothing we can do unless you’re already half dead.” It’s infuriating and stressful and all kinds of other things.

    I have gotten these responses time and time again. It never gets easier. Even after I was told I had a tear in my spinal cord, after 30 hours in the ER and excruciating pain the best they could tell me was to start taking anti-depressants and up my painkiller. Especially due to how cold doctors can be when saying these things, it feels as if the world is falling apart.

    I can’t say I’m sorry or that I’m praying for you or any of that generic phrasing, because it just feels so insincere. But I can tell you that you have my empathy and my concern. If anything, I can at least assure you that you are not alone, my dear friend.

    Have you tried any sort of “alternative” ways? I know many are skeptical of herbs, homeopathy, acupuncture and other such treatments, but throughout my life (at least here in America) I have come to find that while standard medicine is wonderful it can often be narrow minded. Acupuncture has surprisingly helped my nerve pain more than cortisone or painkiller ever has.

    ~Eleanore

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    • Thank you and I do mean that as you are one of the few, not to use those phrases. Over the last 30+ years, I have tried so many thing, but unlike you, I haven’t found anything that has actually made a difference. It didn’t stop me from trying a few when my guts first started to cause problems, with little luck. I had come to the conclusion that they only worked if you believe in them. Then I saw someone giving a dog acupuncture and it worked for the dog. It made me think again, I guess with my nerves being so fragmented, that their maps of the nervous system, doesn’t match mine any longer.

      Thank you for caring. (((Hugs)))

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      • You know, I honestly am still unsure about it. Some days I feel like it definitely relieves my nerve and muscle pain for at least a few days and other days it feels as if it doesn’t help at all. But considering all of standard medicine has left me hanging on a cliff time and time again, I figure alternative ways can’t do much worse than not work. I don’t know a ton about how nerves function (I barely understand my own nerve damage) but I suppose that might be true. I know so many people in so much pain which such little help, and it breaks my heart into a thousand pieces. It doesn’t help that I’m one of them, because I feel as if I am helpless to help them. But I do care, I promise you. If that’s all I can give, I give my empathy as much as I can. You’re welcome. ❤

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