I've been at it since November 2010. I don't want this to be what I'm remembered for.
I know the Ship is not the whole of your life, but I'm pretty sure, that in this corner, at least, it's not going to be all you're remembered for. By anyone.
Feel like I should say more but there are no words, really...
@Rossweisse, I will always remember the delight of sparring with someone who could school me in snark. But I will also never forget to enjoy life, thanks to the kintsugi of you.
Daughter-Unit and her dear hubby found out today that their sweet, sweet kitty has cancer. The vet took out one tumor, but the other involves his left eye and possibly his brain. He'll see a veterinary oncologist Thursday. Poor boy. My poor kids.
@Rossweisse, I will always remember the delight of sparring with someone who could school me in snark. But I will also never forget to enjoy life, thanks to the kintsugi of you.
Thank you, RooK! I have enjoyed it greatly, and I trust we're not yet entirely done. And I thank you for "kintsugi."
Martin, I'd let you have an hour or so. Thanks!
JJ, I am so sorry about the kitty. The ills of animals and small children are always the hardest, because there's no way to explain things to them. At least I can understand, on an intellectual level, what's happening to me.
(My left iliac crest (I had to look it up) is fractured, and they can't get me into radiation until Thursday. I get two treatments before I go out of town, and six upon my return the following week. Ouch, dammit.)
Well, I had my trip to Santa Fe, and had increasing difficulty in walking around as it went along. On Friday last I had a CAT scan, where they discovered multiple fractured bones in my pelvis.
They can't do any more radiation in that neighborhood (I had my last treatment for that one yesterday), so I was sent to a team of specialists who burn out tumors and then put cement into the cracks between bones. They can only do one small section at a time, and they go for the most painful spots first.
So on the 24th, I will have a procedure on the tumor in my left hip socket, which is currently keeping me from walking with any degree of ease or comfort ("gimping" is more like it). I'm hoping they can do at least one more section before I take a long-planned trip to London in late September. Walking is necessary there!
The hardest part in all this has been the realization that I have to accept, and even request, help from others. One of my neighbors has been magnificent. She's even going to buy some bottles of my house red for me!
Rats!
But that cementing technique sounds promising. Will remember it if I get to that situation.
Remember people LOVE to help. It's part of our monkey past. Living in a group that you want to flourish, you help members who need it).
Keep a list. People always say "Ask me if you need anything"; so do it. It gets easier I have found. Like you I am independent with a capital "I". But seeing how HAPPY it makes people to be given something they can do for you has converted me. In the Biblical sense of turned me right around!
Sitting here while my dad rests. Hard to see the days filled with drugged drowsiness. But comfort from pain is all important. Feels like a twilight of sorts. Am thankful for this community at my fingertips. This is largely a solitary time and yet profoundly important.
My surgery just got moved up to Monday morning (right after my oncologist offered to prescribe a wheelchair for me). That's a relief.
RooK, I'm planning to ask a tall neighbor to come and change a battery in a wall clock I can't reach. It's getting a little easier to make these requests as it goes along.
The wheelchair sounds great.
Saving your energy for the things that bring you most life and joy is a good management strategy I reckon.
And I agree with RooK. Never feel you have to host people- make 'em work. It is a way to honour you and say what they want to say- without words.
...
And on my mums birthday 2 days ago, (died 15 months ago from cancer), as I sat with my dysfunctional family, once again, I thanked her and cursed her cancer for her leaving.
Death does not end relationship. There is a mum sized hole left behind. I picture a garden.
It's quite beautiful. It's framed with the achievements of my children and family, like little wild flowers. The stories, the brag dad moments, the proud husband celebrations and the 'look at me, look at me' bits as well. And as I have just discovered, watered with the odd tear.
And it is a place of gentle quiet joy.
And in my work I get to visit it often. And that is ok.
For our relatives past and present.
For our friends, for those who have shared their story, in all the different ways.
For those who are a part of our story, living and loved.
For our gardens, the flowers and brambles, wild and fecund.
My surgery just got moved up to Monday morning (right after my oncologist offered to prescribe a wheelchair for me). That's a relief.
RooK, I'm planning to ask a tall neighbor to come and change a battery in a wall clock I can't reach. It's getting a little easier to make these requests as it goes along.
When are you going to stop being stoically amazing?
One is born with "the gift" (??) and it developes with and is reinforced by the experiences with which one is presented.
Or in plain language you just get moreso with what gets dumped on you , often time after time in a neverending spiral so you never know from what direction (or person) it's going to come at you next.
So, if we have been honest to ourselves and solid in our praxis all our lives we react to cancer (diagnosis and ongoing disease or threat of) as we react to everything else . No big changes. Just a bit of fine-tuning - like developing the skill of asking for specific help from a specific person with regard to a clock. Or for myself just an hour ago arranging with a person I trust (but whom noone else will think of chasing up) to destroy particular journals when The Time Comes
"People" have put all sorts of labels and praises and criticisms (usually implied) on me since I began my Cancer Journey (as they insist on calling it because they think is my whole life which it isn't). Part of the process for me is to remain true to myself and not get carried away by their weird "praise" or bizzzarrrrre suggestions of New Directions (nutritional, psychological or whatever)
Just keep on being yourself, Rossweisse.
It's the only way.
It always was the only way.
Martin, I am not stoic, let alone "amazing." (Ornery, yes.)
I do not want a wheelchair unless I'm at an airport or (for now) heading to a procedure at a hospital. I want to stay in my house, with my cats and my things, until the end, if possible.
..."People" have put all sorts of labels and praises and criticisms (usually implied) on me since I began my Cancer Journey (as they insist on calling it because they think is my whole life which it isn't). Part of the process for me is to remain true to myself and not get carried away by their weird "praise" or bizzzarrrrre suggestions of New Directions (nutritional, psychological or whatever)
Just keep on being yourself, Rossweisse.
It's the only way.
It always was the only way.
Trudging along 'way behind ya....Galilit
Hang in there, Galilit.
I used to whine about all sorts of little ailments; no more. One positive thing I've gained from this is an appreciation of what matters.
I know what you mean about "people." There's a lovely woman in my cancer support group who is dead set against eating dairy products, and can recite a laundry list of Bad Things about them. I don't care. I have Stage IV cancer. My life is being measured out in months. I like yogurt and cheese and cream in my coffee and ice cream, and I am going to consume them. And I'm going to drink my daily two glasses of the House Red, because I enjoy it.
Yeah...food...having been way Ahead of The Times and eating "natural" since long before you could get almond milk in a supermarket, way before gluten-free was "a thing", and "coconut sugar" had not yet been thought of ... I just love those who have been vegans for 7 1/2 months telling me what to eat. Especially when they were the people who either secretly admired me or thought me weird when they ate meat and store-bought bread 35 years ago. My answer to them is "If I had not been doing all those things all those years I'd have had cancer earlier and have been dead by the early 1990's"
I am a plain goat/sheep yoghurt-eater and I have an ice cream from a Little Place Near Here every week and will continue to do so. It's such a treat and I support a small business who provide employment for local youth as well.
The "compliments" annoy me more though. I have been an exceptional, radical, brave person all my life and I will live this particular period of my life the same way. (Did I also mention my modesty?!)
Whatever else it may not be it is still my choice how I manage my life. And it is not my job to give anyone an explanation why I got cancer 3 times and why by implication whatever it is that you have been so enthusiatically doing for the last 9 weeks will keep you cancer-free ie Not Like Me
And anyway I do not consider myself as "having cancer".
As my first oncologist said "You "have cancer" till you get you first treatment (usually surgery for breast cancer). Then you are "a woman in treatment"
Just over a year after oesophageal cancer got my father a friend of my age has lost his father at much the same age as mine (possibly down to old age, mind). Then I got home to find an email telling me that someone I once met and had a wonderful conversation with (about the joys of super-slow leg spin in cricket, because we both bowl it) has terminal cancer.
I've been fundraising this year in Dad's memory, my job involves working with what one day may well be cancer drugs, but right now it just feels so fucking inadequate.
Yeah, it's a word chucked at me a lot too.
There is something in it. But it's mostly used by the pathetic to excuse themselves or the self-deluded to suck off your energy.
The phrase "take it with a grain of salt" springs to mind
(I am allowed to say things like that in HELL, aren't I?)
I’m recovering from surgery on Monday, in which several pieces of my disintegrating pelvis were cemented back together. I may need another procedure (or three), but I’m hoping that this will get me walking well enough to go to London as planned next month. Thank you for asking!
OK. Was given permisssion to continue Palbociclib/Ibrance.
My bloods seem to regain their same level. (I had thought they might just go down and down ie recovering a little less completely every cycle)
Feeling pretty confident and will have my 1/2 tsp of whisky tonight (last day of the cycle ie after 7 days recovery)
I go ahead and enjoy my nightly wine regardless of where I am in the Xeloda cycle. (I missed Monday because of the surgery, so my week now starts on Tuesday.)
I think there comes a time when it no longer matters what it says on (or what is in) The Bottle, but when it simply behoves us to praise God/gods for Bottles!
Virtually all my treatments and procedures, with the lone exception of the double mastectomy, have been outpatient, but you can become part of a community in Radiation. Everyone has a treatment at the same time, in the same place, for days on end, and people get to know each other. The caregivers build even more camaraderie, it seems to me, than the patients, since we only sit and chat for so long until we're taken to be zapped.
I'm still friends with an African-American woman who had treatments at the same time as me during my first cancer. I brought her flowers when she had her last treatment and got to ring the bell. She and her caregiver came back a week later and did the same for me when it was my turn. We call each other "twin," because our timing and attitudes were so matched up.
In other cancer news, I had a brain MRI this morning, and my internist just got me the results: "Everything's fine; nothing has changed." The brain tumor is behaving itself and staying dead, just the way we want it.
I just learned that in my recent surgery (in which tumors were burned out and some of the pieces of my pelvis were cemented back together), seven tumors bit the dust. Unfortunately, they can't do anything with my sacrum; it's "entirely metastatic tissue." But I'm getting around a bit better than I was now. Thanks be to God and good doctors.
Gosh you are brave! Taking an interest in the gory details.
This time around (#3) I am not even looking at my bloods - I just do the test (counts) through my "port" at the hospital and they go straight to the oncologist. Who then hopefully says "Fine!" or "Stable".
It is, thank you. If my still-new chemo pills work, that should slow down the spread, and if they can keep doing the burn-the-tumors-and-cement-the fractures thing, I can hope I won't be completely crippled. I want to maintain some independence.
I haven't bothered about the specifics of my blood counts for years!
Martin, if you're addressing me, yes, I will accept "amazingly ornery." Thank you!
What was supposed to be a quiet week dedicated to getting ahead with work is instead turning into another big Medical Festival. I saw another (very cool) doc in the Interventional Radiology practice this afternoon, who says that he or his colleague can do another cementing procedure either late this week or early next. I have to get a CT scan for that. (No contrast this time - yay!) Because my hands, arms, and feet are constantly prickly and feeling "asleep," my oncologist has ordered a full-spine MRI. This is horribly long to accomplish and next to impossible to schedule, so they're going to do it on Sunday morning. (I have to miss the first full choir service of the program year. Curses!)
The very cool IR doc says that they can help for now, but that since my sacrum is one big mass of tumors, it's inevitable that the crud is going to move further into the bones in that neighborhood. At least he - and my other amazing physicians - are willing to give me the Unvarnished Word and not sugarcoat things. For that, Deo gratias.
My goal right now is to fly to London as planned on the 24th . As long as I can walk, however slowly, I should be okay.
I rarely post here as I have nothing I can say, but I want to just say, as GG did, you rock. All of you. Such strength. Such good humour. Such strength. Yes, I want to say it twice. This thread can be heartbreaking to read, even though I do not "know" you offline, but your strength here, and your sharing of the terrible journey, does inspire. And give an insight into this wicked disease.
I just have to be able to walk a little better than I'm doing now to manage London. I think I may be taking more taxis (read: taking taxis instead of the Tube) on this trip.
Comments
I know the Ship is not the whole of your life, but I'm pretty sure, that in this corner, at least, it's not going to be all you're remembered for. By anyone.
Feel like I should say more but there are no words, really...
Gentle virtual hugs are always welcome.
Thank you, RooK! I have enjoyed it greatly, and I trust we're not yet entirely done. And I thank you for "kintsugi."
Martin, I'd let you have an hour or so. Thanks!
JJ, I am so sorry about the kitty. The ills of animals and small children are always the hardest, because there's no way to explain things to them. At least I can understand, on an intellectual level, what's happening to me.
(My left iliac crest (I had to look it up) is fractured, and they can't get me into radiation until Thursday. I get two treatments before I go out of town, and six upon my return the following week. Ouch, dammit.)
They can't do any more radiation in that neighborhood (I had my last treatment for that one yesterday), so I was sent to a team of specialists who burn out tumors and then put cement into the cracks between bones. They can only do one small section at a time, and they go for the most painful spots first.
So on the 24th, I will have a procedure on the tumor in my left hip socket, which is currently keeping me from walking with any degree of ease or comfort ("gimping" is more like it). I'm hoping they can do at least one more section before I take a long-planned trip to London in late September. Walking is necessary there!
The hardest part in all this has been the realization that I have to accept, and even request, help from others. One of my neighbors has been magnificent. She's even going to buy some bottles of my house red for me!
But that cementing technique sounds promising. Will remember it if I get to that situation.
Remember people LOVE to help. It's part of our monkey past. Living in a group that you want to flourish, you help members who need it).
Keep a list. People always say "Ask me if you need anything"; so do it. It gets easier I have found. Like you I am independent with a capital "I". But seeing how HAPPY it makes people to be given something they can do for you has converted me. In the Biblical sense of turned me right around!
Blessings
IJ
My surgery just got moved up to Monday morning (right after my oncologist offered to prescribe a wheelchair for me). That's a relief.
RooK, I'm planning to ask a tall neighbor to come and change a battery in a wall clock I can't reach. It's getting a little easier to make these requests as it goes along.
Saving your energy for the things that bring you most life and joy is a good management strategy I reckon.
And I agree with RooK. Never feel you have to host people- make 'em work. It is a way to honour you and say what they want to say- without words.
...
And on my mums birthday 2 days ago, (died 15 months ago from cancer), as I sat with my dysfunctional family, once again, I thanked her and cursed her cancer for her leaving.
Death does not end relationship. There is a mum sized hole left behind. I picture a garden.
It's quite beautiful. It's framed with the achievements of my children and family, like little wild flowers. The stories, the brag dad moments, the proud husband celebrations and the 'look at me, look at me' bits as well. And as I have just discovered, watered with the odd tear.
And it is a place of gentle quiet joy.
And in my work I get to visit it often. And that is ok.
For our relatives past and present.
For our friends, for those who have shared their story, in all the different ways.
For those who are a part of our story, living and loved.
For our gardens, the flowers and brambles, wild and fecund.
You are part of my story, and I give thanks.
When are you going to stop being stoically amazing?
One is born with "the gift" (??) and it developes with and is reinforced by the experiences with which one is presented.
Or in plain language you just get moreso with what gets dumped on you , often time after time in a neverending spiral so you never know from what direction (or person) it's going to come at you next.
So, if we have been honest to ourselves and solid in our praxis all our lives we react to cancer (diagnosis and ongoing disease or threat of) as we react to everything else . No big changes. Just a bit of fine-tuning - like developing the skill of asking for specific help from a specific person with regard to a clock. Or for myself just an hour ago arranging with a person I trust (but whom noone else will think of chasing up) to destroy particular journals when The Time Comes
"People" have put all sorts of labels and praises and criticisms (usually implied) on me since I began my Cancer Journey (as they insist on calling it because they think is my whole life which it isn't). Part of the process for me is to remain true to myself and not get carried away by their weird "praise" or bizzzarrrrre suggestions of New Directions (nutritional, psychological or whatever)
Just keep on being yourself, Rossweisse.
It's the only way.
It always was the only way.
Trudging along 'way behind ya....Galilit
Martin, I am not stoic, let alone "amazing." (Ornery, yes.)
I do not want a wheelchair unless I'm at an airport or (for now) heading to a procedure at a hospital. I want to stay in my house, with my cats and my things, until the end, if possible.
Hang in there, Galilit.
I used to whine about all sorts of little ailments; no more. One positive thing I've gained from this is an appreciation of what matters.
I know what you mean about "people." There's a lovely woman in my cancer support group who is dead set against eating dairy products, and can recite a laundry list of Bad Things about them. I don't care. I have Stage IV cancer. My life is being measured out in months. I like yogurt and cheese and cream in my coffee and ice cream, and I am going to consume them. And I'm going to drink my daily two glasses of the House Red, because I enjoy it.
Keep on being yourself, Galilit!
Rossweisse // No surrender!
I am a plain goat/sheep yoghurt-eater and I have an ice cream from a Little Place Near Here every week and will continue to do so. It's such a treat and I support a small business who provide employment for local youth as well.
The "compliments" annoy me more though. I have been an exceptional, radical, brave person all my life and I will live this particular period of my life the same way. (Did I also mention my modesty?!)
Whatever else it may not be it is still my choice how I manage my life. And it is not my job to give anyone an explanation why I got cancer 3 times and why by implication whatever it is that you have been so enthusiatically doing for the last 9 weeks will keep you cancer-free ie Not Like Me
Yay! for No Surrender!
IJ
And anyway I do not consider myself as "having cancer".
As my first oncologist said "You "have cancer" till you get you first treatment (usually surgery for breast cancer). Then you are "a woman in treatment"
I reckon oncologists, doctors and nurses spot me right off as my "type"
I've been fundraising this year in Dad's memory, my job involves working with what one day may well be cancer drugs, but right now it just feels so fucking inadequate.
AG
Oh, organizers for the Komen Race for the Cure.
There is something in it. But it's mostly used by the pathetic to excuse themselves or the self-deluded to suck off your energy.
The phrase "take it with a grain of salt" springs to mind
(I am allowed to say things like that in HELL, aren't I?)
How are you doing?
My bloods seem to regain their same level. (I had thought they might just go down and down ie recovering a little less completely every cycle)
Feeling pretty confident and will have my 1/2 tsp of whisky tonight (last day of the cycle ie after 7 days recovery)
I think there comes a time when it no longer matters what it says on (or what is in) The Bottle, but when it simply behoves us to praise God/gods for Bottles!
Blessings
IJ
The Cure For Racism Is Cancer -Tony Hoagland
You rock.
IJ
Virtually all my treatments and procedures, with the lone exception of the double mastectomy, have been outpatient, but you can become part of a community in Radiation. Everyone has a treatment at the same time, in the same place, for days on end, and people get to know each other. The caregivers build even more camaraderie, it seems to me, than the patients, since we only sit and chat for so long until we're taken to be zapped.
I'm still friends with an African-American woman who had treatments at the same time as me during my first cancer. I brought her flowers when she had her last treatment and got to ring the bell. She and her caregiver came back a week later and did the same for me when it was my turn. We call each other "twin," because our timing and attitudes were so matched up.
In other cancer news, I had a brain MRI this morning, and my internist just got me the results: "Everything's fine; nothing has changed." The brain tumor is behaving itself and staying dead, just the way we want it.
Thanks for that piece RooK
This time around (#3) I am not even looking at my bloods - I just do the test (counts) through my "port" at the hospital and they go straight to the oncologist. Who then hopefully says "Fine!" or "Stable".
Good news on the whole for you, innit tho'?
I haven't bothered about the specifics of my blood counts for years!
What was supposed to be a quiet week dedicated to getting ahead with work is instead turning into another big Medical Festival. I saw another (very cool) doc in the Interventional Radiology practice this afternoon, who says that he or his colleague can do another cementing procedure either late this week or early next. I have to get a CT scan for that. (No contrast this time - yay!) Because my hands, arms, and feet are constantly prickly and feeling "asleep," my oncologist has ordered a full-spine MRI. This is horribly long to accomplish and next to impossible to schedule, so they're going to do it on Sunday morning. (I have to miss the first full choir service of the program year. Curses!)
The very cool IR doc says that they can help for now, but that since my sacrum is one big mass of tumors, it's inevitable that the crud is going to move further into the bones in that neighborhood. At least he - and my other amazing physicians - are willing to give me the Unvarnished Word and not sugarcoat things. For that, Deo gratias.
My goal right now is to fly to London as planned on the 24th . As long as I can walk, however slowly, I should be okay.
Thank you for letting me whinge!
I rarely post here as I have nothing I can say, but I want to just say, as GG did, you rock. All of you. Such strength. Such good humour. Such strength. Yes, I want to say it twice. This thread can be heartbreaking to read, even though I do not "know" you offline, but your strength here, and your sharing of the terrible journey, does inspire. And give an insight into this wicked disease.
Godspeed to London, Ross.
I just have to be able to walk a little better than I'm doing now to manage London. I think I may be taking more taxis (read: taking taxis instead of the Tube) on this trip.