Within a dreadfully sad context and all looking for a better tomorrow - you people, all of the contributors here, have my best wishes and highest regard.
My oldest and dearest friend is shortly to have maxillo-facial surgery for another horror no-one should suffer (ameloblastoma), let alone a woman in her best years. I have found so much of what you share above helpful, as one who cares & will contribute to care. Thank you all for the lessons from experience - taken seriously.
My oldest and dearest friend is shortly to have maxillo-facial surgery for another horror no-one should suffer (ameloblastoma), let alone a woman in her best years. I have found so much of what you share above helpful, as one who cares & will contribute to care. Thank you all for the lessons from experience - taken seriously.
That's great, tasty shakes are easy to digest, and help keep blood sugar levels nice and high while feeding the brain during 'chemo-brain-time' when in the dip between chemotherapy sessions.
What a week. My wife went to hospital at 2pm last Monday, had a nuclear dye injection, then a session with a humongous x-ray camera to map out the position of her lymph nodes. She was admitted to surgery the following day, and within two hours she had had her second mastectomy. I got a text from her at lunchtime saying that the general anaesthetic was wearing off. She looked great, and was ecstatic to be finally free of cancerous tissue.
As her patient's escort, I was able to stay in the hospital's onsite accommodation, and just ate and ate in the dining room to keep my strength up. She was discharged the next day at 2pm, and we drove home. Of course, the house was by now freezing cold, so while she sat in the pickup truck nice and toasty drinking tea, I was running around, unpacking everything, making the stove fire, boiling up hot water bottles, while cooking supper. She had fallen asleep, and after I woke her up, we sat in the truck watching the twilight - so grateful to be home. Yesterday was just lovely, like as if we had never been way.
She is sitting up fully dressed in a chair beside the stove reading a book, while I'm writing this, and it is bliss.
ToS
ToS that sounds fantastic.
We are on to round two. She is tired and sleeping a lot, but still eating well. I made her scrambled cheese eggs and a baked potato for dinner.
I'm waiting for the Neulesta Onpro to beep to take it off her arm. Her cell counts were good last Wed before the Thursday treatement.
I have three days left to work this year before I go on vacation till Jan 2, so I will have more time soon.
We are on to round two. She is tired and sleeping a lot, but still eating well. I made her scrambled cheese eggs and a baked potato for dinner.
I'm waiting for the Neulesta Onpro to beep to take it off her arm. Her cell counts were good last Wed before the Thursday treatement.
I have three days left to work this year before I go on vacation till Jan 2, so I will have more time soon.
ToS - lovely report; best wishes for a comfy & forgettably-complete recovery.
From my end - L is spending the w/end with our daughter, pending further investigative op this Monday (10th Dec). We'll obvs be watching, waiting, loving, hoping & supporting what happens & what is found regardless.
This too shall pass.
From my end - L is spending the w/end with our daughter, pending further investigative op this Monday (10th Dec). We'll obvs be watching, waiting, loving, hoping & supporting what happens & what is found regardless.
This too shall pass.
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Thank you for your kind words, they are much appreciated.
I must confess that I had to look up ameloblastoma, and for an attractive woman in her prime, that is a really tough call to have to contend with. Still, if it has been caught early, there is a lot that can be done for her. She will still be gorgeous, but in a different kind of way, and more so.
It reminds me of a story I heard about the model Naomi Campbell. She has a face of almost perfect symmetry - a very rare phenomenon. If you look at pictures of her, she has a small scar over an eyebrow. Her modelling contract stipulates not to have it retouched from photographs, as she feels that this slight imperfection draws attention to her beauty. As a photographer/optical painter, I believe this to be true. I constantly look for beauty and true beauty is always nestled within imperfection. Over time, your friend can be convinced of this and thus enable her to overcome her instinctual fear of rejection. I know it's tough, but you can get used to anything.
ToS
ToS- Your thread was obviously overdue, thanks for taking the step to create it. Fortunately we have the Lounge as an appropriate place for conversation, and this is a good place to be. Anyone who is reluctant to share their medical situation can read these posts and know that a caring soul is only a post away if they want someone to talk to.
I wish the best for all the members here and their loved ones. Keep your chins up and moving forward.
I was in the Oncology office yesterday for labwork, and went into the chemo room for the first time since May. Looking at chemo patients for the first time without being pumped full of the toxins myself, I realized how difficult it must be for caregivers to watch their loved ones go through this process.
From a patient's point of view:
You know your caregiver is there for you. You know they love you and are willing to deal with whatever crazy mess comes along. You know they worry for you and worry about you. But you may not know what they really see. What they have to witness and can't help but wonder while managing to put on a geniune smile for you. You absolutely appreciate them, but it's hard to know just WHAT to appreciate.
Since this thread has started, I make sure to tell my wife how much I appreciate her putting up with me through this. Even though I'm doing fine at this point, I'll tell her again when I get home tonight.
I wish the best for all the members here and their loved ones. Keep your chins up and moving forward.
I was in the Oncology office yesterday for labwork, and went into the chemo room for the first time since May. Looking at chemo patients for the first time without being pumped full of the toxins myself, I realized how difficult it must be for caregivers to watch their loved ones go through this process.
From a patient's point of view:
You know your caregiver is there for you. You know they love you and are willing to deal with whatever crazy mess comes along. You know they worry for you and worry about you. But you may not know what they really see. What they have to witness and can't help but wonder while managing to put on a geniune smile for you. You absolutely appreciate them, but it's hard to know just WHAT to appreciate.
Since this thread has started, I make sure to tell my wife how much I appreciate her putting up with me through this. Even though I'm doing fine at this point, I'll tell her again when I get home tonight.
tsmith1315, it was TheGimp who takes credit for starting this thread, and I guess it all fell together because there certainly is a need for the kind of help and insight becoming available here.
Yes, being in the chemo-room is tough, knowing some will make it through, while some will not. You can see it in the nursing staff too, it's incredibly tough for them. I've seen caregivers either freeze or go to pieces when faced with a reality they are unprepared to cope with.
A friendly neighbour kindly gave my wife a teddy bear to tuck under her arm after her first mastectomy. So 'Ted' would come with us to the chemo-room. When I was a kid, I used to make puppets and give puppet shows, and became quite good at mimicry and ventriloquism. And of course, Ted became a chemo-room star, talking back to my wife, cracking jokes, inspecting the nurses handiwork, playing peekaboo and having a laugh with other patients. What a naughty little bear! Yes, Ted certainly helped me get through the day.
What I'm getting at is refusing to become a victim, refusing to see your loved one as a victim, enabling the person you are caring for, not to see themselves as a victim, and adamantly refusing to allow the surrounding world to even dare look at either of you as victims. No, sod that - we are survivors and thrivers who lust for life, and that in itself will help the patient and their caregiver to make it through, for when somebody falls seriously ill, dignity means everything.
Anyway, this thread is a safe place. The forum moderators know it, and will protect it for us.
ToS
ToS- thanks for your support, in making such a space. And your second-last para above is spot-on.
Here the good news is - Monday's op proved much less invasive than expected, and feared. Some more bone/gum tissue and one (more) tooth taken; all sent for path work-up and we'll know soon if that's the end of the matter and the whole thing excised and at an end; oh how I sincerely hope so.
And I whole-heartedly wish the same for everyone posting here, waiting on such things.
But fr us the better news is - the patient is home as of yesterday midday, and now resting (inbetween scowling vigourously at the prospect of only consuming soupy soft stuff in the Christmas season...)
Here the good news is - Monday's op proved much less invasive than expected, and feared. Some more bone/gum tissue and one (more) tooth taken; all sent for path work-up and we'll know soon if that's the end of the matter and the whole thing excised and at an end; oh how I sincerely hope so.
And I whole-heartedly wish the same for everyone posting here, waiting on such things.
But fr us the better news is - the patient is home as of yesterday midday, and now resting (inbetween scowling vigourously at the prospect of only consuming soupy soft stuff in the Christmas season...)
And I knew that, my apologies to TheGimp for misdirecting the credit.
IMHO, that is the single most important piece of advice a patient and caregiver can heed.
One's attitude is a huge factor in how well you get where you're going. The patient doesn't need to hear that "victim" perspective, and the caregiver doesn't need the confusion that brings. Chins up and moving forward, there's no place for pity.
example-
My brother called once early on in my chemo, thinking about me, and started to tell me how sorry he was, etc. I stopped him cold and said, "Man, it's no big deal. We've had hangovers this bad." (Which is the truth, they just didn't last as long) And then we started talking about music, which was more more productive for both of us.
Martin, that's good news indeed! Fortunately there are lots of good soft soupy things to eat and it's the right time of the year for them.
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Here the good news is - Monday's op proved much less invasive than expected, and feared. Some more bone/gum tissue and one (more) tooth taken; all sent for path work-up and we'll know soon if that's the end of the matter and the whole thing excised and at an end; oh how I sincerely hope so.
But for us the better news is - the patient is home as of yesterday midday, and now resting (inbetween scowling vigourously at the prospect of only consuming soupy soft stuff in the Christmas season...)
Martin, that is all very good news indeed. It may be helpful when your friend has her next hospital appointment, if she can see the x-rays or ultrasound scans so as to fully convince herself that what has previously been bothering her, is now - gone. Or, she might not even want to even think about it. It's up to her, it's her choice, but to have the option is in itself, empowering.
And if she is grumbling about food, it definitely means she is on the mend!
ToS
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Wonderful news Martin.
At first I was hesitant to start this thread, as it could easily have been misconstrued as a pity thread.
I was reaching out because I had no experience in how to deal with this situation and did not have any inkling as to what to expect.
Thank you all for being open and non-critical in your responses, and I hope I am helping others to whatever degree I can in their journeys as well.
Raisen bread pudding anyone?
I bake raisen bread and give it to friends and my family around Christmas. It is a childhood memory from my grandmother making it. I use a recipe from a cookbook my mother wrote and gave to each of my siblings and myself.
To make pudding, slice the raisen bread, and tear it up into small pieces and place in a baking dish. Mix milk, sugar vanilla, and eggs for a pudding and pour over the raisen bread. Bake at 350F in a pan of water for 45 minutes.
Make a lemon sauce of lemon juice, sugar, lemon rind and corn starch, and simmer until it thickens.
Pour the lemon sauce over the servings of pudding.
At first I was hesitant to start this thread, as it could easily have been misconstrued as a pity thread.
I was reaching out because I had no experience in how to deal with this situation and did not have any inkling as to what to expect.
Thank you all for being open and non-critical in your responses, and I hope I am helping others to whatever degree I can in their journeys as well.
Raisen bread pudding anyone?
I bake raisen bread and give it to friends and my family around Christmas. It is a childhood memory from my grandmother making it. I use a recipe from a cookbook my mother wrote and gave to each of my siblings and myself.
To make pudding, slice the raisen bread, and tear it up into small pieces and place in a baking dish. Mix milk, sugar vanilla, and eggs for a pudding and pour over the raisen bread. Bake at 350F in a pan of water for 45 minutes.
Make a lemon sauce of lemon juice, sugar, lemon rind and corn starch, and simmer until it thickens.
Pour the lemon sauce over the servings of pudding.
I totally understand your expressed concern and slight reticence; for my own part - while not the first time I've seen something so heartfelt posted on a forum - it is the first time I've participated perhaps for very similar reasons. Your post came along when perhaps I (we) needed to vent also - so thank you.
Nice recipe; and more important - best wishes for you & yours meanwhile.
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It's not pity, but empowerment as is what we really need, and reaching out is the very first step towards that empowerment. You, I, we are not alone in this respect. I will say it again, you've got guts, kiddo.
Yesterday was a wonderful day. Ten days after my wife's second mastectomy, it was time to remove the dressing from the wound. I washed her hair and gave her a stand up bath. The bedding had been changed and a set of clean clothes were laid out. Photographs were made. Then I slowly and carefully removed the dressing to see what is now her second scar. It looked good, a nice clean line with no signs of swelling or infection. After cleaning away the detritus, more photographs were made, this time with her looking and smiling at the camera. Then I applied a fresh dressing and helped her dress. She looked and felt a thousand times better.
My wife has now 'gone flat'. She has decided that she really likes it. I have decided that I really like it. We are not alone. There is a growing movement amongst women whom when they discover they have breast cancer, decide to have not just one, but both breasts removed, and elect not to have reconstructive surgery, which quite often causes considerably more problems than it solves.
The reasoning behind 'going flat' is that it empowers the woman and enhances her survival. A woman is thus re-entitled by going flat, by not wearing prosthetics unless she wants to, and by purposely dressing as a flat chested woman, thereby enabling her to redefine and explore her new sexuality and social identity. It is a total win scenario, by which a woman with breast cancer regains control of her destiny by rewriting her life's story on her own terms. I have become convinced of this. Women who choose to go flat are fantastic, and I am immensely proud of my wife. She is both awesome and beautiful, and I rejoice in her boundless courage, even on a bad day.
Thank you for the recipe for bread pudding, my mother used to make it, and I can smell it now as I write.
ToS
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I am happy that your wife is doing better. I continue to keep you both in my prayers.
Day 9 of treatment 2.
She is starting to feel better, eating better and staying up more.
I made raisen bread (6 loaves) and cookies (18 dozen) today. More baking tomorrow so I can ship boxes to my siblings on Monday for my annual Christmas presents. My mother used to send Christmas boxes to all of us with raisen bread and cookies. When I was in the NAVY, it was a bright spot in a rather dreary existence. Unfortunately I lost my mother to Ovarian Cancer when I was 29. Since then I have taken up the tradition,and will do so for as long as I am physically able.
My daughter texted me today, she has started the Raisen Bread tradition and is making two batches to give to friends.
It is nice to see a tradition continuing through generations.
Day 9 of treatment 2.
She is starting to feel better, eating better and staying up more.
I made raisen bread (6 loaves) and cookies (18 dozen) today. More baking tomorrow so I can ship boxes to my siblings on Monday for my annual Christmas presents. My mother used to send Christmas boxes to all of us with raisen bread and cookies. When I was in the NAVY, it was a bright spot in a rather dreary existence. Unfortunately I lost my mother to Ovarian Cancer when I was 29. Since then I have taken up the tradition,and will do so for as long as I am physically able.
My daughter texted me today, she has started the Raisen Bread tradition and is making two batches to give to friends.
It is nice to see a tradition continuing through generations.
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What a year from hell. It started with the announcement i'd be out of a job before the year was done. My job would be outsourced and now I'm recovering from Cataract surgery on both Eyes.
Just a few short weeks ago I was working away from home trying to do as much for my former boss as possible before leaving to start a new job. I got out of Christchurch airport, rental car keys in hand and found I couldn't read the signposts indicating which row the car was parked in. It was a very bright sunny day and the glare from all the cars in the sun was too much. I got directions to the car and sat in it wondering if I should hand the keys back or call a doctor or just what i should do. I drove very slowly out of the car park until there was less glare and drove on to Lyttleton harbour. I was there to fix up some drawings. Outside again in the bright sunshine I found I couldn't see where I was trying to focus on the drawings. Just impossible to read, a blur. An appointment with my GP the following Friday and another just a week later with a consultant and I was booked to have both lenses removed and replaced in two separate operations just a week apart. It all happened so fast it almost took my breath away. I'm only 50 but this type of rapid development of cataracts is a direct consequence of 25years of prednisone use. Whilst waiting for the operation I found it difficult to cross the road because of how foggy my eyesight was in the centre of my vision. Surgery and hi tech modern lenses have all now been paid for from the redundancy payout I collected.
I've now got new lenses in both eyes that have given me better than 20/20 vision and corrected the astigmatism I've had in both eyes. My eyesight is now better than its been in over thirty years. I can see anything I could want near or far without glasses. It's all happened so fast it's nuts. I had a full eye test back in June that picked up nothing.
The first eye operated on looks almost normal now, the second still looks like i've been punched in the face but feels fine. Waking up and not needing glasses feels very strange - driving without them feels like it ought to be illegal. The lenses are Occulentis comfort Edof with one eye set for distance and intermediate and the other for intermediate and near focus. They call it "Comfort Blended Vision". They couldn't promise me I wouldn't need glasses for close work because it doesn't deliver that for everyone.
If my Amp Camp Amp arrives in a weeks time I'll be soldering it up without the need for glasses. I might dig out some safety goggles though. In the mean time the world is a brighter more beautiful place and I'm taking time to enjoy the delicacy of the flowers in the garden and the view across Wellington harbour from where I work. Short walk along the beach each workday is nice too. Peace and goodwill to all this holiday season
Just a few short weeks ago I was working away from home trying to do as much for my former boss as possible before leaving to start a new job. I got out of Christchurch airport, rental car keys in hand and found I couldn't read the signposts indicating which row the car was parked in. It was a very bright sunny day and the glare from all the cars in the sun was too much. I got directions to the car and sat in it wondering if I should hand the keys back or call a doctor or just what i should do. I drove very slowly out of the car park until there was less glare and drove on to Lyttleton harbour. I was there to fix up some drawings. Outside again in the bright sunshine I found I couldn't see where I was trying to focus on the drawings. Just impossible to read, a blur. An appointment with my GP the following Friday and another just a week later with a consultant and I was booked to have both lenses removed and replaced in two separate operations just a week apart. It all happened so fast it almost took my breath away. I'm only 50 but this type of rapid development of cataracts is a direct consequence of 25years of prednisone use. Whilst waiting for the operation I found it difficult to cross the road because of how foggy my eyesight was in the centre of my vision. Surgery and hi tech modern lenses have all now been paid for from the redundancy payout I collected.
I've now got new lenses in both eyes that have given me better than 20/20 vision and corrected the astigmatism I've had in both eyes. My eyesight is now better than its been in over thirty years. I can see anything I could want near or far without glasses. It's all happened so fast it's nuts. I had a full eye test back in June that picked up nothing.
The first eye operated on looks almost normal now, the second still looks like i've been punched in the face but feels fine. Waking up and not needing glasses feels very strange - driving without them feels like it ought to be illegal. The lenses are Occulentis comfort Edof with one eye set for distance and intermediate and the other for intermediate and near focus. They call it "Comfort Blended Vision". They couldn't promise me I wouldn't need glasses for close work because it doesn't deliver that for everyone.
If my Amp Camp Amp arrives in a weeks time I'll be soldering it up without the need for glasses. I might dig out some safety goggles though. In the mean time the world is a brighter more beautiful place and I'm taking time to enjoy the delicacy of the flowers in the garden and the view across Wellington harbour from where I work. Short walk along the beach each workday is nice too. Peace and goodwill to all this holiday season
I had a back problem, treated with a week of prednisone. Sometime after I realized I couldn't see well. Put it off because the back was too bad to sit for exam. When I finally went, the doc said I should not be driving. Cataracts. Like you, they bam-bam replaced both lenses, and sight was immediately better.
My friend had just been through this process and was a great help.
Been nearsighted all my life so not groping for glasses every morning is strange. I do not bother with glasses for daytime driving; the residual error is legally nil.
The lifelong nearsightedness was perfect for reading so I read bare-eye, now I'm using $1 reading specs just like everybody my age.
Specific adaptation: I got my new prescription (hint of astig) made with a 1.75 ADD, to focus at 24 inches, my PC eye-monitor distance. I keep these at the PC. I need the distance correction. For reading text the small astig fix helps.
YES, get $1 reading specs!! You were losing accommodation before, now you have none of your own, that fancy 2-step for general life, but for close-up you need readers. Also for solder-splash and clipped leads! On the US market, the "reading power" is the inverse of the focal length in meters. Or hold the lens to the sun and focus on a wall. Assuming you have "infinity focus" bare-eye, a 3X (13") reader will focus you for stuff about a foot from your eye. I sometimes stack a 3.5 and a 1.5 (5X) for very close work.
My friend had just been through this process and was a great help.
Been nearsighted all my life so not groping for glasses every morning is strange. I do not bother with glasses for daytime driving; the residual error is legally nil.
The lifelong nearsightedness was perfect for reading so I read bare-eye, now I'm using $1 reading specs just like everybody my age.
Specific adaptation: I got my new prescription (hint of astig) made with a 1.75 ADD, to focus at 24 inches, my PC eye-monitor distance. I keep these at the PC. I need the distance correction. For reading text the small astig fix helps.
YES, get $1 reading specs!! You were losing accommodation before, now you have none of your own, that fancy 2-step for general life, but for close-up you need readers. Also for solder-splash and clipped leads! On the US market, the "reading power" is the inverse of the focal length in meters. Or hold the lens to the sun and focus on a wall. Assuming you have "infinity focus" bare-eye, a 3X (13") reader will focus you for stuff about a foot from your eye. I sometimes stack a 3.5 and a 1.5 (5X) for very close work.
Steve, last year I was diagnosed with the beginnings of cataracts in both eyes. I realised this one day at dusk while lifting pieces of coal out from a black scuttle into our stove. I couldn't see the outlines of the individual pieces within the shadow areas of the scuttle, and so was unable to grip them effectively with a pair of tongs.
As I am a photographer, I sensed something was wrong, and as I was just starting to struggle a bit with an otherwise excellent set of varifocal glasses, I had a full medical check up with our local, truly superb optometrist. She told me that my near vision had shifted by only 1/3 diopter in seven years, but continually working outdoors in strong sunlight was beginning to take its toll on the lenses.
It cost me a small fortune, but my current prescription with state of the art Zeiss optics is just phenomenally good. I can now see like a child through a giant picture window as if it wasn't there.
I also got myself a set of what I call my 'American Pensioner' sunglasses. They are huge, and completely fit over my new glasses. I absolutely love them. They cover almost half my face, and have side lenses too. Made of high impact optical quality Polaroid plastic, completely UV protective, and have a +3 stop neutral density factor with an excellent neutral colour balance. The really great thing about them is that when out and about in 'contre-jour' lighting conditions they markedly reduce contrast, and certainly make it a lot easier for me to see details within highlight and shadow areas.
Northern Scotland, like New Zealand has a lot of UV light bouncing around, and I look at my new sunglasses as an essential for driving, walking and picture making - anything to prevent the cataracts developing any faster than what they are going to. Besides, if you are now glasses free, it is a really great idea to wear protective goggles when doing soldering or being active in your workshop.
Good luck, and glad to hear another artist getting their sight back.
ToS
As I am a photographer, I sensed something was wrong, and as I was just starting to struggle a bit with an otherwise excellent set of varifocal glasses, I had a full medical check up with our local, truly superb optometrist. She told me that my near vision had shifted by only 1/3 diopter in seven years, but continually working outdoors in strong sunlight was beginning to take its toll on the lenses.
It cost me a small fortune, but my current prescription with state of the art Zeiss optics is just phenomenally good. I can now see like a child through a giant picture window as if it wasn't there.
I also got myself a set of what I call my 'American Pensioner' sunglasses. They are huge, and completely fit over my new glasses. I absolutely love them. They cover almost half my face, and have side lenses too. Made of high impact optical quality Polaroid plastic, completely UV protective, and have a +3 stop neutral density factor with an excellent neutral colour balance. The really great thing about them is that when out and about in 'contre-jour' lighting conditions they markedly reduce contrast, and certainly make it a lot easier for me to see details within highlight and shadow areas.
Northern Scotland, like New Zealand has a lot of UV light bouncing around, and I look at my new sunglasses as an essential for driving, walking and picture making - anything to prevent the cataracts developing any faster than what they are going to. Besides, if you are now glasses free, it is a really great idea to wear protective goggles when doing soldering or being active in your workshop.
Good luck, and glad to hear another artist getting their sight back.
ToS
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