I woke yesterday morning, not sitting on the edge of the bed, but slowly and through one of the most vivid and weird dreams I have had in years. I’m not going to do what most of you expect, so don’t wait for the gory and bizarre details, as there won’t be any. It’s enough to say that I couldn’t work out, to begin with, whether I was asleep or awake and that hasn’t happened to me since I was a kid. This time, I wasn’t flying or being chased by monsters, I was just there, I was so there. Is it really too much to ask for two nights in a row, where all I do is sleep, blissful sleep, straight forward sleep, two nights without something odd or distressing happening.
When I spoke to the district nurse the other day about the problems I am having, what I didn’t know, was one of the other district nurses on my team, used to be on the Neuro team. She was here today and we talked through my health in general and all the changes that I have noted in the last couple of months. I was quite sure that she was going to say the same as all the others, that being reassessed was the smartest move possible, and she did. The really good thing was, for the first time in years, I was talking to a medical person, who actually knew what PRMS was, without my having to explain all the details. I have become so used to having to explain every stupid nuance, but we could just talk. It also explained why I hadn’t half of the questions I had expected from the other district nurses, she has clearly explained it to all the others. In fact, the nurses have all surprised me at one point or another, by things they clearly knew about me, but were waiting for me to bring the subject up. I knew nurses had to know the relevant issues to their patient’s treatment, and as they are attending to administer enema’s, well how much did they really need to know. Within a couple of weeks of their first visit, I knew they had been reading the details, in fact, some really knew my details. I don’t know where they found the time, but some had gone back years.
Today, though, we just talked about what had worked and what hadn’t. There was no surprise at any of it, until, I told her that I had gone through the chemo treatment. When I had it, it was still in the trial stages in the UK, it hadn’t been given the full approval and I was considered as a Guinea pig. I know that chemo sounds scary, but honestly, it was the best treatment that I was ever given. No side effect, nothing horrid or scary other than watching bright blue liquid going into your veins, while nurses wore enough protective clothing, to enter the core of a nuclear power station, anytime they got anywhere close to it. Not only has it permanently slowed down the rate of progression, I even went into remission for about a year. When the treatment ended, it slow started again, but I don’t have the slightest doubt in my mind, I would be dead by now, if I hadn’t said yes, to being a Guinea pig. The bad news is, you can only have it once. Clearly, our chat has got me thinking, but the main topic has been, would I be prepared to be a Guinea pig again, or not.
It’s a big question, one that most never get asked. When I was asked the question 12 years ago, at that time there didn’t even seem to be a point in questioning the pros and cons. I didn’t have the slightest issue in saying yes to his first offer, but Dr. O’Leary insisted I knew every single one of them. He told me that the chemo would do damage to some of my internal organs, the one most in danger would be my heart. I still didn’t hesitate, I wanted it. I had to go through a battery of tests, just to make sure I could take the treatment before we went ahead. Clearly, I survived and more, but oddly, I don’t know if I would be so keen to be a Guinea pig again. I’ve spent much of the day thinking about it and I really don’t think I would say, yes, again, without a hell of a lot of convincing.
I don’t know what has changed, or why I would hesitate. I have run the question around in my head again and again, but every time, I hit that hesitation point and I don’t totally know why I can’t get past it. You would think that I would jump at it, just as I did the first time, but now, I would be scared of taking that step. Something keeps telling me, that unless they could guarantee, that I would go into remission, the risks now, are just too great. The whole idea of being held as I am now, for even longer than my condition would normally, I honestly don’t think I could handle that. There is one thing living with what nature has chosen for you, but totally another one, in medicine, making it worse. Don’t get me wrong, I’m not trying to hurry my way out of this world, but I have reached a point where the balance has changed.
The medical world appears to me, to these days sees the prolonging of life, as a wonderful thing, regardless of the quality of that life. It about a six months now since I set up my DNR. When I did, I was quite clear in my mind that the only thing that I was saying no to, was having someone jumping up and down on me, or attaching me to machines, that without, I wouldn’t be alive. My health has gone downhill so much in that time, that now, I feel that I couldn’t go through a treatment, that did nothing other than extending my life as is. I don’t know if Adam would totally understand, but I hope that he would, just as he learned over the years I have been ill, that a DNR isn’t a desire to die, just an insurance policy against being forced back into a life, that nature has clearly declared is over.
Please read my blog from 2 years ago today – 08/10/2014 – Being people friendly
Thank you to the two people who left comments yesterday, they both quite beautifully illustrated just how strong that feeling of guilt is, whether totally created by ourselves or fed by others. As I said yesterday it is one thing that no matter how much we try to apply logic to our situations, or we are loved, guilt just…..
the medical world does seem to have this odd obsession with prolonging life, no matter the quality of it. with my copd, I should probably go have an advanced directive drawn up and take control of my own fate (at least in that one regard). thank you for sharing this, it’s the kind of stuff I’m don’t really get to talk about in my own home. I have no doubt Sunshine would respect my wishes, but he is horrified every time we talk about these possibilities. Reading your words, I am reminded that I am not alone.
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You are far from alone, I know that because so many talk to me about this very thing. My husband has accepted the DNR, or as you call it, an advanced directive. If you are in the UK, all you have to do is talk to your Dr. If they agree with your reasoning, and that your health is poor enough, they do the paper work and hand you the signed form. There is a comfort in know that it is done, as I said, since mine was sorted out, I haven’t thought about it. If it is what you want, you have to make your partner talk about it, whether they want to or not, for your own peace of mind.
As our health changes, we know in ourselves what is right for us. Which is why, I no longer feel that being a Guinea pig, would be appropriate, things have changed and I feel differently.
Take care 💞
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Beautifully worded post, you’re absolutely right, we must balance quality of life vs just prolonging it. It leads to some hard decisions, but, as I know from losing my mum this year having a DNR in place made things so much calmer and more peaceful. She was ready to go and she slipped gently away holding my Dad’s hand, rather than being attached to machines. An absolute blessing.
It is something that more and more of us will be faced with, as Drs get better and better at keeping people alive. It used to be so simple, our time ran out and that was it. Now they say they can keep us alive to be 100, a 100 and fit and enjoying life, wonderful, a 100 and sat dribbling in a chair, not knowing who anyone is, well the question has to be asked, is that what any of us want? 😌
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Reblogged this on Musings On My Life.
Thank you again for sharing another of my posts, I really appreciate it, and thank you for your constant support. 💞
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I’m happy to help. People with “invisible” illnesses, and even those with highly obvious ones, don’t often get to tell their stories.
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Hello Pam, have read your blog and have to say I agree with it wholeheartedly.I also have made the same decisions and made it clear to family it’s what I want and not what they would have me do.I found a very helpful book called Now I’m Dead.It sets out what sort of service I want,where to find papers etc.whose to have what that’s not covered by the will.It also tells about registration of death etc.Ive always done it before,and who I’d like to be informed etc.It might be of interest to you and will perhaps cover things you haven’t thought about.Sending love and thoughts as always.Nx
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Thanks Nancy, I like you have already sorted out what happens after. It is really what happens before that I am more looking at now. As said in my post, the quality of life is so important, and that chat with the Nurse, prompted a lot of things I hadn’t thought about before. 💞
The reality is that medicine is about “saving” and “prolonging” life. Doctors focus on the illness and not the individual. So prolonging life regardless of the quality is the aim. Its the patients that are then left to navigate the poor quality life and go on.
I live in a society where DNR is not an option. It’s not even a discussion that is taking place. The only persons fighting for quality of life are those working in palliative care who have the person and not the diagnosis/es at the center of treatment.
I applaud you for making sure you remain at the center of your treatment.
I think that it is something that all of us, regardless of where we live, should fight for. Families mean well, but unless you have lived this way, you can’t possibly understand the truth behind it. 😦