Totally agree with posting at all times whether happy or sad. Isn't there a saying about that? <quickly googles and finds it> "Joy shared is joy multiplied. Grief shared is grief divided."
Re. the lymphodema, think about getting a dietitian to give you a few minutes to see if there are things you are eating that might be making it worse or things you could be eating that would make it a little better. It might be worth it if only to give you a bit of respite from the worst of it. I deal with swelling/lymph stuff on a daily basis but not lymphodema so ymmv.
Thank you all for your encouraging words and thoughtful advice. (@Bishops Finger, I reserve the right to substitute a good red wine or single malt Scotch for GIN, but I take your meaning, and I'll run - figuratively speaking - with it.) The lymphedema (compression stockings? really? in a hot and muggy summer?) and pins-and-needles neuropathy may be the worst challenges yet, but I'll do my exercises and hope to exorcise them.
pins-and-needles neuropathy may be the worst challenges yet, but I'll do my exercises and hope to exorcise them.
Rossweisse, I have had indiopathic neuropathy for a number of years in my legs, hands and feet. I have found applying the over the counter creams you rub on for arthritis seems to give me some relief, as does the exercise. Both better then the pain pills that seem to be all the medical profession has to offer for neuropathy pain. Oh yes red wine and single malt too, I am sure are prescribed as well.
I have found applying the over the counter creams you rub on for arthritis seems to give me some relief,
I had good results from Tiger Balm when it got really bad (along with a sprained ankle). I used the white cream not the red one - anything's worth a try, I think
Rossweisse, I can only add my best wishes and hopes for ease and relief, and add once again my thanks for the grace, patience, and courage you offer up in this, your challenging and difficult journey.
Ross - all best wishes in your continuing battle with the lymphedema. I send you some soothing misty rain from Devon. BTW, over here it is definitely past whisky time....
My PET CT (ie Cancer Scan of Whole Bod, all terribly technical in state of the art Machine that goes "bzzz, bzzzzzz, bzzz" every few seconds) came back ... and the family doctor summed it up with the word: "STABLE"
I won't read the whole document myself - I did read my first 2 but it is tedious and lousy quality print-out that will have me at the optician if I am not careful!
My thanks to the supportive members of #teamRossweisse; you mean more to me than you can know.
I ask your prayers for Christina: My friend/neighbor down the street is coming home from Florida (where she and her husband are establishing residency) to support her daughter - one of my younger daughter's erstwhile classmates - as Christina, a dear friend of hers, dies from ovarian cancer at age 25. It has ripped through her body in short order, and she's just entered hospice.
It was bad when my friend/neighbor's mother was diagnosed with pancreatic cancer in her late 80s; it was bad when I was diagnosed with breast cancer at 58. It's a horrible disease at any age or stage. But it is just obscene when a young woman who has barely begun her life is felled by it. God damn it.
Kristina (I guessed wrong about the spelling of her name) died on Monday afternoon, after fewer than 24 hours in hospice. Her parents are trying to be strong. Her mother asked her friends to come and choose the dress in which she is to be buried; they complied, and then went to the home of one of their number and got sensibly drunk, because how do you deal with that at such a young age? Damn it!
Catching up with the thread and praying that light perpetual shine on Kristina and that her friends and parents may be surrounded by love and support. Lord have mercy, just 25?!?
For Marvin's dad.
In thanksgiving for Galilit's good news.
I have found applying the over the counter creams you rub on for arthritis seems to give me some relief,
I had good results from Tiger Balm when it got really bad (along with a sprained ankle). I used the white cream not the red one - anything's worth a try, I think
I've been following this thread and I add my prayers.
I have diabetic neuropathy that has gotten rather bad. Personally I find stimulant creams like Tiger Balm or Icy Hot tend to set off the nerves and worsen it. YMMV. I haven't tried Aspercreme. But I have been having some luck with CBD topical cream. That's a compound from hemp with no THC involved. If your jurisdiction allows it, you might give it a shot. It works pretty quickly for me, although it seems better for recovery after a day on my feet rather than warding off pain when I'm on the hoof.
I have a new kind of diabetic neuropathy that just started this past Monday. It's a weird pain on the inside of my left thigh. Feels as though someone is slamming a jagged needle into a vein. Highly unpleasant. I have found great relief from this and other aches by using a topical cream made from emu oil (?!), Eucalyptus, menthol, and both CBD and THC. The THC dose is not enough to make a person high and it's applied to the skin...I am so very happy I live in Washington state, where such things are legal. Ross, not sure where you live, but if you're interested, let me know and I can tell you the name of this stuff. I love it for arthritis, neuropathy, and my fibromyalsia.
Cannabis derivatives (CBD oil etc.) are now legal in the UK, AIUI.
I've tried what was advertised as a fairly high strength CBD capsule to relieve my muscle pains, but found that it didn't really help. I suspect that it may not have been quite as hefty as described...and the capsules sold in High Street shops like Ho**and & Ba**ett are too weak (and expensive!).
I further suspect that smoking cannabis might actually be better for me, IYSWIM, but I do NOT intend to go down that road, where all sorts of problems lie.
At the risk of my being accused of junior hosting, please, peeps, take great care about using anything recommended by others.
Medicinal cannabis has been legal in Wales for some time, though it wasn’t in England. (The powers that be seem to turn a blind eye to the recreational type as well, unless you’re growing and/or dealing significant amounts.)
Hope the heat hasn’t made the lymphedema worse, Rossweisse...
Thank you, @Aravis. I'm mostly staying indoors (I go out for medical appointments, church, and the occasional fun outing with friends), and I'm being self-indulgent about the thermostat settings for the air conditioning. I really can't keep it as high as I used to.
I have new, incredibly tight compression stockings that are helping to control the lymphedema, although I'm still stuck in yoga pants. The needle-stabbing neuropathy is really the worst part of all this; there is not much to be done about it, and even I find it hard to joke about.
At least my eyelashes are coming back! I find that amazingly good for my morale.
This comes with every kind of disclaimer and is absolutely not advice. In fact, the best advice is to have a GP with an enquiring mind, and at last, we have one.
A couple of months ago I had another vicious episode of stabbing pains in the legs - the worst I could remember. It happened after receiving a new hip-to-toe stocking for the lymphoedema to a higher compression spec than before. The conclusion was that, since I was also experiencing severe lower back pain, a nerve from the leg was trapped by the compression and acting as if the pain originated in the leg. The higher compression was almost certainly the cause. I stopped using that stocking and the pain went away fairly quickly (with some help from a muscle relaxant and an anti-inflammatory). It's all about side effects of side effects of treatment, starting with melanoma in a completely different area. I also learned that lymphoedema is aggravated if you get cellulitis, but that's another story. As I said, that's my experience. Anyone else's explanation may be completely different. Then there's the radiation burn playing up again, and the arthritis. Call me Job.
It sounds like you have had an incredibly difficult time. I deeply wish you some relief from these burdens - but perhaps that isn't possible.....
That is kind of you, but moaning about it can sometimes make us laugh at ourselves too when we see what we just wrote. And sometimes we share tips that turn out to be useful. The recurring useful advice seems to be the consumption of red wine.
Please pray for L, who I mentioned before. Her operation is today. I'm not sure how radical the surgery will be. Please pray also for the her as the process unfolds. Whatever it brings.
Please pray for L, who I mentioned before. Her operation is today. I'm not sure how radical the surgery will be. Please pray also for the her as the process unfolds. Whatever it brings.
I have good news: Yesterday morning's ScanFest showed that the tumors in liver and lung are stable; the brain tumor is staying dead, and hasn't sprouted any little friends. Deo gratias!
(Of course, my bones are probably continuing to get worse, but we didn't do a bone scan this time, and I refuse to worry about it right now. I'm busy.)
Ross - so pleased to hear that things are stable. All good karma being sent across the pond to you....
ThunderBunk - Glad to hear that things seem to have worked out positively for L.....
Comments
Re. the lymphodema, think about getting a dietitian to give you a few minutes to see if there are things you are eating that might be making it worse or things you could be eating that would make it a little better. It might be worth it if only to give you a bit of respite from the worst of it. I deal with swelling/lymph stuff on a daily basis but not lymphodema so ymmv.
I had good results from Tiger Balm when it got really bad (along with a sprained ankle). I used the white cream not the red one - anything's worth a try, I think
((Rossweisse))
((all in need))
Rossweisse, that just sucks - I'm so sorry
All others dealing with this horrible disease
I won't read the whole document myself - I did read my first 2 but it is tedious and lousy quality print-out that will have me at the optician if I am not careful!
Thanks for Thoughts and Prayers, to all !!!!!
@Graven Image, can you suggest specific products?
My thanks to the supportive members of #teamRossweisse; you mean more to me than you can know.
I ask your prayers for Christina: My friend/neighbor down the street is coming home from Florida (where she and her husband are establishing residency) to support her daughter - one of my younger daughter's erstwhile classmates - as Christina, a dear friend of hers, dies from ovarian cancer at age 25. It has ripped through her body in short order, and she's just entered hospice.
It was bad when my friend/neighbor's mother was diagnosed with pancreatic cancer in her late 80s; it was bad when I was diagnosed with breast cancer at 58. It's a horrible disease at any age or stage. But it is just obscene when a young woman who has barely begun her life is felled by it. God damn it.
For Christina.
#teamRossweisse
Rossweisse, the two brands I have used are Icy Hot, and Aspercreme. They both have helped about the same.
RIPARIG.
At least the poor lassie had family and friends to be with her.
For Marvin's dad.
In thanksgiving for Galilit's good news.
For Rossweisse, as always. Shatter glass, girl.
I've been following this thread and I add my prayers.
I have diabetic neuropathy that has gotten rather bad. Personally I find stimulant creams like Tiger Balm or Icy Hot tend to set off the nerves and worsen it. YMMV. I haven't tried Aspercreme. But I have been having some luck with CBD topical cream. That's a compound from hemp with no THC involved. If your jurisdiction allows it, you might give it a shot. It works pretty quickly for me, although it seems better for recovery after a day on my feet rather than warding off pain when I'm on the hoof.
I've tried what was advertised as a fairly high strength CBD capsule to relieve my muscle pains, but found that it didn't really help. I suspect that it may not have been quite as hefty as described...and the capsules sold in High Street shops like Ho**and & Ba**ett are too weak (and expensive!).
I further suspect that smoking cannabis might actually be better for me, IYSWIM, but I do NOT intend to go down that road, where all sorts of problems lie.
At the risk of my being accused of junior hosting, please, peeps, take great care about using anything recommended by others.
But you all know that.
Hope the heat hasn’t made the lymphedema worse, Rossweisse...
I have new, incredibly tight compression stockings that are helping to control the lymphedema, although I'm still stuck in yoga pants. The needle-stabbing neuropathy is really the worst part of all this; there is not much to be done about it, and even I find it hard to joke about.
At least my eyelashes are coming back! I find that amazingly good for my morale.
A couple of months ago I had another vicious episode of stabbing pains in the legs - the worst I could remember. It happened after receiving a new hip-to-toe stocking for the lymphoedema to a higher compression spec than before. The conclusion was that, since I was also experiencing severe lower back pain, a nerve from the leg was trapped by the compression and acting as if the pain originated in the leg. The higher compression was almost certainly the cause. I stopped using that stocking and the pain went away fairly quickly (with some help from a muscle relaxant and an anti-inflammatory). It's all about side effects of side effects of treatment, starting with melanoma in a completely different area. I also learned that lymphoedema is aggravated if you get cellulitis, but that's another story. As I said, that's my experience. Anyone else's explanation may be completely different. Then there's the radiation burn playing up again, and the arthritis. Call me Job.
That is kind of you, but moaning about it can sometimes make us laugh at ourselves too when we see what we just wrote. And sometimes we share tips that turn out to be useful. The recurring useful advice seems to be the consumption of red wine.
I have good news: Yesterday morning's ScanFest showed that the tumors in liver and lung are stable; the brain tumor is staying dead, and hasn't sprouted any little friends. Deo gratias!
(Of course, my bones are probably continuing to get worse, but we didn't do a bone scan this time, and I refuse to worry about it right now. I'm busy.)
She is out of surgery and doing well. That, I'm afraid, is as much as I know.
Deo Gratias indeed for your news. Praying that the lymphoedema may ease, at least in its effects on your wellbeing.
Deo gratias!!
ThunderBunk - Glad to hear that things seem to have worked out positively for L.....
Continued prayers for Ross and L....