fuck cancer

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Oh Nath...I'm so sorry.

I'm still wrestling with the realities of palliative sedation. I think that's on the cards for my mother inlaw, this from you Nath makes me feel less conflicted about it. I know that you are right.

set the controls for the heart of the sun (VegemiteGrrl), Monday, 24 June 2013 23:29 (ten years ago) link

I don't know if I'm going to have my mother in law for much longer. It seems like maybe a matter of days now. she's fading so fast. I hate to clog this up, but i don't know where else to go to let these things out of me. I wrote a whole bunch of stuff down and if it's okay I'm just going to put it here to get it out of me.

I Am A Child

I was 15 when my grandmother passed away. Growing up, we had been very close. Many weekends I had spent at her house where she taught me how to sew, how to bake, how to do crosswords. We played scrabble together, watched the matinee movie on tv together for Saturday lunch. If I stayed long enough she would take me to church with her on Sundays. She always assumed I would be bored, and tried to get me to go to Sunday school instead…but her grandiose church with the incense and the stained glass windows was what I loved. I didn’t care if what they said was kind of long and boring, I loved sitting in the church with my Nan. It was and still is one of my favorite places. My personal place of holiness.

She had been on dialysis for kidney failure for a number of years, but she got very sick when I reached my teens, and was eventually hospitalized, and that was where she died.

I don't remember a lot of her illness. Nan changed a lot when she got sick. She stopped wanting to read, or do crosswords, and didn't seem very interested in talking much...and one of the last times I visited her, she didn't know who I was at all, and was talking to me about people she went to school with. It scared me enough that no-one really expected me to see it worsen.

I think it was a function of my age that I didn’t really think about her dying. And if I did, I didn’t have much of a logical connection to what that really meant, how that would feel. But it hit me hard, like a punch in the stomach, when they lowered the coffin and it made its way out of the chapel to the crematorium. I had a visual cue that told me I wasn't going to see her again. The realization hurt so much, and scared me, as abrupt and painful is someone had just torn off my arm.

The terror I felt at my grandma suddenly not existing anymore stayed with me for a long time, manifesting into a lifelong fear of death and dying that had started when I was very young and became a fear that could wake me from my sleep with a full-blown panic attack. But that was a thing I tried to keep inside. I didn’t know how to make it stop, or go away, so I just tried not to think about it.

Flashforward to 37 year old me.

In an unlikely but wonderful turn of events, over the past 10 years my mother in law has slowly been filling in the hole that was left after my grandmother’s death.

For one thing, she was roughly the same age as Nan. Her personality was completely different to Nan’s – Nan was a very proper lady, not prim or even stern, but just … very even. Practical and no-nonsense. Mauraid was effusive, full of hugs and bursting to overflowing with love and praise for her own immediate family, as well as me, the interloper. I wasn’t a stranger with Mauraid, I was her daughter. But her age afforded me the same gift of wisdom and experience that my Grandmother had. I have a voracious appetite for knowledge and unfettered curiosity - Finally, a new person who had been places, seen thing, who could fill my bucket with new stories of a different life, a different childhood, new other worldly experiences.

We played scrabble together. We talked about the books that we read. We watched movies together. And we shared a lot of time together. She drew me into her family and loved me like a daughter, and I relished the warmth of having that kind of love so far away from my family.

The greatest gift we shared was when we began to go to church together at Christmas. Neither of us regular church goers, but this time together was us going to say hello to the people far from us – I could commune with the memory of my grandmother, and Mauraid could commune with her brother who had passed a few years before, and her mother who had died when Mauraid was a young girl of 21. That was the time when we were closest, and I felt like I had gained a new power, a power to harness my past and steer it in a new direction.

Time is a wheel. And our wheel of fortune took a turn for the worse. A year ago, my mother-inlaw was diagnosed with Stage 3 pancreatic cancer. The prognosis was 3 months. At first it was a blow, for her, for our family, everyone. I feared the worst and struggled not to grieve her daily. Yet, even through the wheel had spun us down to the depths, it slowly was spinning her, and us up out of the bad. Undertaking a strange and rather radical homeopathic therapy, my mother in law surprised her doctors, and us, and lived for another year after her diagnosis with no growth in her tumors.

The year lulled me back into the routine of our life, and I got used to the idea that we might have her around for a while, despite the initial scare.

Oh, cruel fortune.

We all tell ourselves stories so that we don't have to face the inevitable truth. But the truth had arrived. Mauraid’s tumors were now growing, her pancreas was obstructed, and the wheel had again begun turning downwards once more. Much as I wanted to hide from it, the truth was here and bearing down.

Terminal stages of an illness causes a remarkable shedding of niceties. Not only in family, but in the patient. At least, that’s what I have seen in my family. Mauraid most noticeably. Where once she had not wanted to talk about what would happen if it got worse, where the knowledge of the growth inside of her had kept her awake at night and scared her to tears, she was now steely and resolute in her acceptance of what she now saw as the inevitable end.

My denial of the truth was now seeming almost quaint, childlike…and kind of sad. The more my world was challenged, the more flimsy it felt…and the more lost I felt. I couldn’t hang onto this idea that Mauraid was going to live forever. Yet in spite of what I could see happening right in front of me, I was still clutching tightly to my fear of death with both hands.

I've watched her get more and more frail...more and more tired...She can no longer digest any food. Her eyesight is worsening. I can hear her teeth when she talks. Physically, it seems like she just melts a little more every day. Conversation grows increasingly difficult. She trails off in mid sentence, her mind like tufts of dandelion seeds on a windy day.

Where at 16 I was on the fringes of my grandmother's last days, now at 37 I have a front row seat. I have sat with her as she as she told me plainly, with overwhelming love how much I mean to her, her hopes for my future. She has talked openly about how ready she is for her imminent end while gently holding my hand, imploring me not to be sad as my tears of fear and denial fell freely.

With Mauraid now, I am again a child.

When it first became clear that Mauriad was heading towards her last days, I wanted to pull the emergency brake. I wasn't ready, I needed more time to prepare for the truth. But life, as we know, and death, are just not like that. You don't get to choose what you're a part of. You can only choose to participate or withdraw. I love her too much to withdraw...so, here now I find myself walking into the water with her.

Every step that I'm taking with her fills me with terror, dread, fear, knowing that I am walking towards an eventual end where she is no longer walking beside me. I cannot shake that same terror I felt when I realized I would not have my grandmother anymore. I am full of selfish fear of letting go. But it’s a whole different thing when you know full well that your fear of letting go is completely futile. The heart wants what it wants, and Mauraid wants to go. And go she will.

My friend's mother said that working through suffering together is one of the most beautiful parts of being human.

Seeing the fraction of what I have seen, I know that to be true.

I have seen what strong stuff this woman is made of.. In her final days, she has proved to be stronger than the sum of all of us. She is ready. Seeing unwavering resolve every day is challenging my fear of letting her go, like grease slowly working its way into a long-rusted hinge.

I realized that as much as part of me wishes that I could detach like my 16 year old self and hide from the grownup realities of death, I'm mostly glad that I'm bearing witness to these adult experiences. I don't feel any more grownup for having seen them, I certainly don't enjoy them while they are happening, but I am beginning to understand that maybe my fear of death is more an echo from my childhood, a last remaining vestige of youth; the more time I spent with Mauraid in her final days, the more it seems to me that age and a certain kind of wisdom turns that childhood monster behind the closet door into a new brightly-lit doorway out of the darkness...a place where death becomes a well-lighted passage out of the dark, sad, lonely wilderness that is terminal illness.

set the controls for the heart of the sun (VegemiteGrrl), Monday, 24 June 2013 23:31 (ten years ago) link

Wow VG, you brought tears to my eyes. That is one of the most beautiful pieces of writing I've read in a long time.

Much love to you and your family <3

just1n3, Tuesday, 25 June 2013 02:39 (ten years ago) link

what a brilliant, and very heartbreaking, post VG.

this hit hard.

When it first became clear that Mauriad was heading towards her last days, I wanted to pull the emergency brake. I wasn't ready, I needed more time to prepare for the truth. But life, as we know, and death, are just not like that.

this is my world to the power of x.
1 year on the speed of the loss of lucidity still hurts as i was denied the chance to say some final words of love.

cheers for posting this VG ...

mark e, Tuesday, 25 June 2013 09:21 (ten years ago) link

Coming from you that means an awful lot, mark. Thank you :)

set the controls for the heart of the sun (VegemiteGrrl), Tuesday, 25 June 2013 16:43 (ten years ago) link

Mother in law passed away on Thursday night.

I visited her on Tuesday after I posted the story above, and she had completely deteriorated -- they had a hospital bed in the room, oxygen machine, and she on pain meds so pretty much out of it, but she was still breathing regularly. It was a horrible shock, but also the flag that we didn't have a lot of time left with her. We got a phonecall Wednesday morning that she was only breathing once a minute, and we drove right over. That morning we all thought that we would be saying final goodbyes by lunchtime. We stayed til 10pm that night, she had made no change. We went home and tried (and failed) to sleep, and came back first thing the next morning. Still no change. The hospice nurse visited, and said based on her vital signs she would have said she only had maybe an hour or two at best...the fact that she'd been holding out for 36 hours that way was unusual. All we could do was keep up the pain meds so that her breathing, such as it was, wouldn't become labored, and that eventually whatever was keeping her ticking along like a metronome would eventually let go. We left that night at 9pm...and at 11:50pm we got the call that she had finally passed.

Even though we knew it was coming, it was still sad, as expected. But going through this whole experience, it was about the nicest kind of sad I've felt, in that she wasn't in any pain when she did go, that we had all been together at the house with her, and taking care of each other while we were taking care of her because there were huge stretches of time where there was literally nothing we could do except, just be together. And as a family we hadn't been together like that, talking, laughing, sharing stories, hanging out, for over a year. So it was a strange kind of gift that she gave us.

But she left us some incredible memories too. That woman kept everything of sentimental value to her, from Mr Veg's first ever preschool artwork, her own baby booties and baby blanket, boxes upon boxes of photos, a handwritten 'memory book' of stories from her childhood that she'd been filling out over the past couple of years...and the greatest treasure of all, my brother in law last night found a stack of love letters, from my father in law to her, written in 1964 one month after they met, up until a few months later when he proposed to her and they married. They're so beautiful and simple and full of life and love and youthfulness.

The saddest now is going to be helping my father in law. He has dementia -- not so bad that he doesn't know where she is, but we have to give him a list of 'events' to tell him where she is now, what's going to happen to the ashes, when the funeral will be, etc...and he has to consult that list many many times throughout the day to keep his compass pointed in the right direction. The stress has rattled him to his core. Occasionally he gets so anxious he forgets that she's gone and we have to tell him again, or he'll forget completely where he is for a moment. It's so hard for him right now. To have him look at you and say "I never wanted to see this day" with tears in his eyes is just, it breaks my heart.

seriously, fuck cancer.

set the controls for the heart of the sun (VegemiteGrrl), Monday, 1 July 2013 01:47 (ten years ago) link

I'm so sorry, Veg. Love to you and yours.

emil.y, Monday, 1 July 2013 01:58 (ten years ago) link

oh vg ..

<3

fuck cancer.

mark e, Monday, 1 July 2013 07:10 (ten years ago) link

<3

dj hollingsworth vs dj perry (darraghmac), Monday, 1 July 2013 07:41 (ten years ago) link

Very sorry to hear that Veg, all the best you and your family <3

Le Bateau Ivre, Monday, 1 July 2013 10:42 (ten years ago) link

Heartfelt condolences to you and your family, VG.

that mustardless plate (Bill A), Monday, 1 July 2013 11:59 (ten years ago) link

In some ways having the time time to say goodbye is better than someone being hit by a bus with no warning. Not a lot of ways, though; fuck cancer, and my condolences to you and yours, VegemiteGrrl.

Andrew Farrell, Tuesday, 2 July 2013 12:14 (ten years ago) link

I'm so sorry VG.

how's life, Tuesday, 2 July 2013 12:21 (ten years ago) link

Sorry to hear, VG. Fuck cancer and fuck dementia too, since you mention it.

slippery kelp on the tide (a passing spacecadet), Tuesday, 2 July 2013 12:39 (ten years ago) link

Love and hugs to you and your family VG. What you describe was very similar to my sister's passing; tragic, and utterly devastating, but containing pinpricks of solace here and there. I'm glad it was as positive as possible for her - pain-free, peaceful, surrounded by family, etc. Your support for your father in law will be so vital from now on, and you are a legend for being there for him. Those love letters sound beautiful.

franny glass, Tuesday, 2 July 2013 13:15 (ten years ago) link

Fuck cancer and fuck dementia too, since you mention it.

^ I fully endorse this post. Sorry to hear your bad news VG and wish you the best with your FIL.

Filk Hollins (NickB), Tuesday, 2 July 2013 13:45 (ten years ago) link

thx guys :)

set the controls for the heart of the sun (VegemiteGrrl), Tuesday, 2 July 2013 16:41 (ten years ago) link

four weeks pass...

so, one year on ..

yes, life is easier.
the never ending darkness has subsided.
however, that does not take away the never ending impatience with the needs of being a single parent.
i mean, seriously, can someone pleas please please answer the 146 questions that mk2 asks every day..
it's exhausting.
oh, and scary and unexpected discovery that i have become a threat to all married couples in my local vicinity.
i.e. a few drinks last week ended up with an old friend laying into me as he thought i was coming onto his wife.
the fact is that she has recently recovered from cancer, so i was complimenting her on this aspect of her life.
next thing i know, her husband is full on in my face and threatening all manner of chaos ..

adult life sucks.

mark e, Wednesday, 31 July 2013 22:48 (ten years ago) link

adults suck. they don't have to suck you down with them.

good wishes sent your way.

UMA DAS MELHORES MUSICAS DELA (Noodle Vague), Thursday, 1 August 2013 00:36 (ten years ago) link

jeez talk about piling on

threatened adults can go fuck themselves

the pen is mightier than the penisword (VegemiteGrrl), Thursday, 1 August 2013 03:17 (ten years ago) link

Got an IM this afternoon from an ex who I'm still friendly with...

She has stage IV brain cancer rapidly spreading through lymph nodes and bones, her Dr. told her she has 3-4 months tops.

What do you even say? I tried to stay positive but man do I feel incredibly miserable.

Jersey Al (Albert R. Broccoli), Friday, 9 August 2013 02:27 (ten years ago) link

Hey Mark, I hadn't paid much attention to this thread in the beginning because frankly...it's a hard one for me because I've walked a million miles in your shoes. I have the answers to those 146 questions...but they never seem to make sense.

It gets better.

the rofflestomper (dandydonweiner), Friday, 9 August 2013 03:14 (ten years ago) link

so there i am chillin' in the west wing to some old school rawkus grooves feeling good.

i walk into the tv room to find mk2 watching some old home videos that bh had filmed.

the sound of her voice and bammmm.

impact : massive downward groove.

i hate unexpected triggers.

18 months on and this shit still hurts hard.

time for a top up and an increase in volume.

mark e, Saturday, 17 August 2013 19:59 (ten years ago) link

aw mark :(

set the controls for the heart of the sun (VegemiteGrrl), Saturday, 17 August 2013 20:46 (ten years ago) link

i went into my deleted voicemails and found one from my mother-in-law, and I've kept it so I can hear her voice

i feel weird abt it but I dont like just ~going on~ with life, not having some tangible part of her still with me.

set the controls for the heart of the sun (VegemiteGrrl), Saturday, 17 August 2013 20:49 (ten years ago) link

:( Take care, Mark.

the supreme personality of Godhead : a summary study (a passing spacecadet), Saturday, 17 August 2013 20:57 (ten years ago) link

all ok now ..

a year ago i would have fallen into a dark hole for days, whereas now, i can cope ..

was just the trigger that hit ..

never expected it given the 18 months ..

mark e, Saturday, 17 August 2013 21:12 (ten years ago) link

My sister's birthday today, the first since she passed. She would have been 40. My parents had her partner and son over for birthday cake.

I live in a different country so I couldn't be there. Settled for having spaghetti for dinner - her favourite, and what we always had on her birthday.

franny glass, Saturday, 17 August 2013 23:46 (ten years ago) link

three months pass...

My mum has just got a diagnosis of grade 2 invasive lobular breast cancer last week :( My step-dad is planning to re-mortgage his house to pay for some private treatment known as Targeted Intraoperative Radiotherapy. I am phoning some UK private healthcare companies tomorrow to find out the cost etc. Anyone know anything about this type of treatment? It isn't available on the NHS but seems to be more commonly used in Germany + the USA.

Damo Suzuki's Parrot, Sunday, 17 November 2013 21:13 (ten years ago) link

http://www.ncbi.nlm.nih.gov/pubmed/23037497
http://www.ncbi.nlm.nih.gov/pubmed/24224997
http://www.ncbi.nlm.nih.gov/pubmed/24225155

Concept seems to be limiting radiation exposure (and side effects thereof) while producing equivalent benefit. Evidence doesn't look overwhelming either way. Don't think it's standard of care even in the US given the way this evidence is reported.

What's his rationale for wanting to pursue this option?

Plasmon, Monday, 18 November 2013 00:33 (ten years ago) link

They seem to think this is the best treatment, based on reading an article about successful trials of this treatment, cut out of a tabloid newspaper and passed on to them by a friend. That type of solid medical research! I think the 'one-stop' aspect is appealing to her and she is terrified of how much the intensive 6 week chemotherapy is going to hurt.

Damo Suzuki's Parrot, Monday, 18 November 2013 12:11 (ten years ago) link

couldn't you get another oncologist's opinion about this before they proceed with it?

Nilmar Honorato da Silva, Monday, 18 November 2013 12:13 (ten years ago) link

like a third party who doesn't have any institutional/emotional/financial investment in providing or not providing this new treatment?

Nilmar Honorato da Silva, Monday, 18 November 2013 12:14 (ten years ago) link

you and your family have my sincere best wishes anyway, whatever treatment is chosen

Nilmar Honorato da Silva, Monday, 18 November 2013 12:20 (ten years ago) link

^ all of what he said. good luck with everything dsp

but my heart is full of woah (NickB), Monday, 18 November 2013 12:27 (ten years ago) link

It's not meant to be an alternative to chemo (which aims to treat distant micro-metastases) AFAICT, but to whole breast irradiation (which treats local/regional disease, in the breast and/or axilla).

Many cases of local breast ca are treated without chemo, or with long-term hormonal treatments like tamoxifen, which isn't what most people imagine if they think of "chemotherapy".

Whole breast radiation can go on for weeks, so maybe that's what they meant. Don't tend to think of radiation treatment as being very painful, but experiences vary, no doubt.

Does she have an oncologist she trusts? AFAIK NHS paid docs would have no financial interest in steering her one way or the other.

Plasmon, Monday, 18 November 2013 13:55 (ten years ago) link

Thanks for your input/well wishes Nilmar,Nick + Plasmon. I am getting the feeling that this TARGIT thing is not as widely accredited as she has been led to believe I am still waiting for two private hospitals to return calls and their call centre staff had never heard of it, one of them was googling it while we talked. Also I think she is making some wrong assumptions about the treatment she is going to get because she referred to it as '6 weeks of chemotherapy'. Just by chance there is a program on the beeb tonight about bogus medical companies ripping off cancer sufferers. I think her relationship with doctors are just as bad as mine Plasmon, nod along, make eye contact and smile politely and phew.. glad that is over. The only reason they caught the cancer at this stage was through a screening program that was being run in the area and a friend twisted her arm to attend, luckily.

Damo Suzuki's Parrot, Monday, 18 November 2013 20:46 (ten years ago) link

Hmm. There might be 6 weeks of chemo as part of the treatment plan too, but that wouldn't be replaced by TARGIT.

It's sometimes reasonable to forgo chemo if the year-by-year risk of metastasis is low, the benefit is limited, and/or the patient's general state of health and overall function increases the morbidity of treatment. I would think grade 2 disease would make them that much more likely to recommend a full regimen of treatment.

The oncologist should be willing to meet with family (along with the patient) to discuss the options, especially if it becomes clear that she doesn't fully understand what she's being told.

Hope it works out OK, best wishes.

Plasmon, Monday, 18 November 2013 23:03 (ten years ago) link

This TARGIT treatment has not gone past trial in the UK, there is nowhere that does it. Just enquiring about it led me to a remarkable lady from a private company in Liverpool who gave my mum a good pep talk free of charge and told her she is lucky the cancer has been found the opposite side of her heart. She is a top girl who went way beyond what she is paid to do and cheered my mum up without soft-soaping anything.

Damo Suzuki's Parrot, Wednesday, 20 November 2013 23:55 (ten years ago) link

That sounds a bit wank, but she really cheered her up. More than any of of us could do.

Damo Suzuki's Parrot, Thursday, 21 November 2013 00:04 (ten years ago) link

nothing is wank that makes people feel better when they're going through this, it's very tough and sad and frightening. my very best wishes to you and your mum.

estela, Thursday, 21 November 2013 00:10 (ten years ago) link

estela otm

set the controls for the heart of the sun (VegemiteGrrl), Thursday, 21 November 2013 00:21 (ten years ago) link

There are so few people who can pull that off really well. Hooray for help from unexpected but effective places.

ljubljana, Thursday, 21 November 2013 03:57 (ten years ago) link

Just got off the phone from my mother and she is better than last week. She has chosen a mastectomy, rather than targeted surgery and is feeling happy. I am so glad she has cheered up, because last week she was so fearful. It sounds like the cancer can be dealt with at this stage with one removal. I told her, you could cut anything off me right now, I wouldn't give a shit. Anyway we had a good laugh.

Damo Suzuki's Parrot, Saturday, 30 November 2013 01:23 (ten years ago) link

glad to hear she's doing better :)

set the controls for the heart of the sun (VegemiteGrrl), Saturday, 30 November 2013 01:32 (ten years ago) link

wishing the best for her, DSP

eclectic husbandry (Dr Morbius), Saturday, 30 November 2013 03:30 (ten years ago) link

all the best

the objections to Drake from non-REAL HIPHOP people (Alfred, Lord Sotosyn), Saturday, 30 November 2013 03:38 (ten years ago) link

Indeed!

Ned Raggett, Saturday, 30 November 2013 03:46 (ten years ago) link

one month passes...

And fuck you again for taking someone away too soon, cancer, and fuck you again.

http://blogs.dallasobserver.com/dc9/2013/12/benjamin_curtis_rip.php

Ned Raggett, Monday, 30 December 2013 23:11 (ten years ago) link

neds on the money.

fuck cancer.

mark e, Monday, 30 December 2013 23:48 (ten years ago) link


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