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Monday, August 20, 2007

Letting People Die

My mother, as some of you have read, is suffering from lung cancer. She doesn't want to treat the cause but has reluctantly agreed to some palliative care. She has chosen to treat each symptom independently, as though there's no link between each of her ailments. She refuses to have scans to determine tumour size/location. Instead she is treated for her COPD and breathlessness.

I've learned to go along with this. I've learned she wants to go down this road alone. I've learned all I can do is sit on the sidelines. I've learned she wants nothing more of me than to be ready for the inevitable and to step in to handle things when it happens.

I totally agree with non-intrusive treatment for something they are pretty sure she won't survive. They'd love to get in there with their knives and radiotherapy and chemotherapy. I agree with her not wanting to go down the route my father was pressured into taking. I'm also glad I was with her when she was told about the disease and, by being there, was able to be an independent support for her, helping her weigh up her options and ultimately form an opinion against the surgeon's counsel. At times it was downright bullying and she was reluctant to discuss anything but surgery as an option. My mother decided she didn't want any treatment for the cancer.

As part of the arrangement, it was agreed that I would receive copies of her medical reports from her GP and her consultant specialist. Well, her GP has failed to keep his end of the bargain but her specialist does include me on all three-monthly reports. The latest one is a bit vague. For instance: "She denies weight loss, chest pain or haemoptysis." Does that mean they're not monitoring her weight? And that they suspect chest pain and coughing up blood but she's refusing to admit to it? Are their asses covered by saying "she denies" when asked these things? But to not even monitor her weight?! How can that be useful in her treatment?

They've added another inhaler to her existing medications. They wouldn't be doing that if things were unchanged, in fact they have noted: "Reduced air entry". One thing that stands out for me is that there very specifically is no 'Prognosis' indicated on the report. And I have learned that if my mother doesn't wish to know herself, they won't release the information to me, either.

So I guess I just have to read the reports as they come in and make my own determination of the situation.


Evening said...

May you and your mother have many peaceful days together.

anna said...

I had no idea. I'm so very sorry. You're handling this so well and you are, once again, an inspiration.

Sunny Delight said...

I can only make a small attempt to imagine how you are feeling...the mixture of emotions...

The relationship you have with your mother is an uneasy one at best...yet you love her...you wish for her only the best...

I hold out the hope, that if she is receiving palliative care then she is at least not in physical pain.

One of the things I have surmised from your writing of your mother, is that she attempts to a stubborn degree, to keep her independence.. and is this she is also. She knows she will die of her illnesses. You, too know this. I wish for your sake, that there was some way to achieve a meeting of your hearts, but I fear that will not be so. I so wish you could have that.

From the report you sited, this line,"She denies weight loss, chest pain or haemoptysis." Here in the states that would mean...they are monitoring her, but she is not admitting to what is obvious to her doctors. Which is her right. If she wishes no curative treatment. I have a strong feeling this is much harder on you, than it is on her.

I can only let you know, I love you, and wish I could take your worry and pain away...but I cannot. Oh how I wish I could though.

D said...

Fiona - see yet another rabbit out of the hat. So sorry to hear this news I hope that you get to spend some extended and quality time wth your Mom (and perhaps sister too)

sophie n said...

i'm so sorry to hear about your mother...i too had no idea...


Jonas said...

Sometimes it's simply time to die. It's sad to learn that horrible truth...but it's TRUTH. I hope your Mom finds peace somewhere in her dwindling days. I hope you find peace, too, Fiona.

And the wheel of life keeps turning...

freebird said...

How hard for you to have to witness this from the sidelines, and yet still be fed bits of half-information. Would it be possible for you to ask the specialist exactly what they mean by those comments? Not that it's going to help anything - except maybe your understanding of the situation.
I feel for you, Fi.

Miranda said...

Im so sorry to hear (((Big hugs)) everyone above has already said it.

Anonymous said...

I didn't realize that your mother had cancer. Sorry to hear it. There's not to much you can do. She doesn't want treatment. Lung cancer isn't painful as I recall, except you get short of breath. I'm sure the doctors are monitoring her. There's not much they can do if she refuses treatment. Even if she denies having any symptoms, it doesn't make any difference. She's still going to die of the cancer.

I think it's harder to watch someone you don't like die than someone you love. Sounds wrong but it's not. When someone you don't like dies you have lost the chance of ever making it right and that hope lives, whether you know if or not.

Do what you need to do so that you have no regrets when she dies.

Fiona said...

Thank you all for your supportive comments. I didn't realise I had failed to explain the gravity of my mother's illness before. One of these days I'll write of my parents' illnesses in more detail. It's a cautionary tale.

Evening - thank you, I think maybe we've found as much peace as we can, for us.

Anna - I'm the coper in the family, always have been. I don't know any other way to handle it, sometimes I think I try to do too much.

Sunny - I guess I want to know so I can help her to prepare. And all of us. My father at least gave us that, the ability to be involved in his life in a meaningful way, in a way we could understand and help and come to terms with what he was facing, with him. My mother has always sought to exclude us. I know I must stop trying to understand this as though it was me in her position, I'd be more like my dad. Thank you for always being there for me in such a meaningful way :)

D - well I never realised this was a rabbit, but reading back I guess I never sat and expounded on what was going on :)

Soph - thank you :)

Jonas - I know, sadly I've faced it more in the past five years than I have my entire life. And I know there will be more. It is part of life's cycle and as natural as birth. It's still hard though. After my mother passes, I'm hoping for a holiday from death for a while.

FB - I'm lucky to get what I do, it took a lot of letter writing and convincing just to be included on the three-monthly reports. My mother has a tendency to lie to the doctors, to the point she puts herself at risk. I think that's what annoys me the most. I guess it's her way of either avoiding the truth, or keeping us away from it.

Miranda - hugs and thank you :)

Deb - she continues to smoke, a lot, and can hardly walk five metres without having to stop and catch her breath. They found the tumour when her voice went. Some days she can hardly talk, others she's not too bad. I believe the thing with lung cancer is that it has a tendency to metastasize to the brain. That worries me the most I think. I don't really know what to look out for. I think, honestly, her death may come from pneumonia, with the state her chest is in. Perhaps that would almost be a blessing. It does feel harder watching her die than what my dad went through, on some level. At least he pulled me in and even let me help with his medication when I was visiting. Although people might think that would be worse, it isn't. To be able to tend to him meant so very much to me. He allowed me that expression of showing love for him. Thank you for your words Deb.

George said...

So sorry Fi. I think it better if she leaves with dignity rather than a failed case of therapies.

In my little opinion, I think she has chosen well ... it is what I would do too

Fiona said...

I totally agree George. In fact it was with my help that she chose this route. But by keeping us out, she leaves us in the dark as to how to help her prepare or deal with day to day problems. She tells her neighbours more than she tells me. It hurts to be excluded and to just, I guess, one day get a call from a neighbour.

Fusion said...

I didn't realize either Fiona. I know things have not been good between you and her, but I hope they smooth out before she is gone.

Fiona said...

Thank you Fusion. I decided the other day to just be her daughter from now on. So I called and we chatted. I didn't let her upset me. And I'm in the midst of writing her a letter with which I shall enclose a photo of the man I love...and tell her about him. Thank you for your good thoughts :)


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