Supplies? What do I need to have in hand?

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Supplies? What do I need to have in hand?

by Lawgirl2831 on Tue Jan 07, 2020 08:43 PM

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My 78yo dad was just diagnosed with rectal cancer and is starting radiation and chemo tomorrow. Plan is to do surgery after 5-6 weeks of the radiation/chemo. What do I need to have on hand throughout all of this to help with comfort, pain, etc? Etc? For ease, assume cost is not a concern Lotions? Pillows? Chairs? Heating pads? Ice packs? New bed mattress (his is very old)? B if comfy “lazy boy” chair? Any ideas would be so appreciated! What helped you or your loved one?

RE: Supplies? What do I need to have in hand?

by jimmy66 on Thu Jan 16, 2020 07:03 PM

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On Jan 07, 2020 8:43 PM Lawgirl2831 wrote:

My 78yo dad was just diagnosed with rectal cancer and is starting radiation and chemo tomorrow. Plan is to do surgery after 5-6 weeks of the radiation/chemo. What do I need to have on hand throughout all of this to help with comfort, pain, etc? Etc? For ease, assume cost is not a concern Lotions? Pillows? Chairs? Heating pads? Ice packs? New bed mattress (his is very old)? B if comfy “lazy boy” chair? Any ideas would be so appreciated! What helped you or your loved one?

Good Afternoon lawgirl,

First, I am sorry to hear of your father's diagnosis.

Here's my 2¢...I'm in my early 60's, stage 2/3 rectal cancer. I did the first two phases of treatment (radio/chemo & surgery) in late 2017. I refused the 3rd phase of the more invasive chemo. I have much more to say on this, but to answer your question first...assuming he goes ahead with phase 2 (surgery), and even phase 3 (heavy duty chemo), he won't need anything until after the stoma reversal. Then he will need A&D ointment, medical gloves, adult diapers and pads. He will also need pysllium husk and loperamide. And he will need these forever...get a prescription for the lopermide - that's how much he will need it.

You did not provide any info, so I'm am guessing his surgery is to save the anus. If not, the above doesn't apply as he will have a permanent colostomy bag. My doctor was able to save my anus, so the above applies to me and others with my outcome.

Now for my rant regarding his situation, and this is not advice, just my perspective (and I fully expect backlash). Just some things to think about, to consider...

I had highly skilled doctors, but my decisions were based on fear more than anything else, much to my regret.

I am highly suspicious of the percentages they will throw at you, e.g. 20% will have a complete clinical response to phase one. What that means is surgery may not be necessary and a "wait and watch" approach may be the better choice, especially at his age. I had the surgery, and the pathology came back negative, meaning no cancer cells left behind (but accuracy???); in other words, my surgery was not necessary. I want to stress here that is my perspective, my attitude towards my situation. Current treatment standards (in the US and worldwide) dictate the approach/options that I was given, and took...and I have regretted it ever since. My life revolves around a toilet, my sex life is over, urination is painful, but tolerable. I can no longer work at my profession...I loved my life before, not so much now. If I could go back in time, I would only have done the phase 1 treatment, and let nature take it's course. I, personally, would rather have a few good years versus 10 or 20 bad ones.

I fully admit my rant comes from a place of anger...

But my point to all of this is, AFTER PHASE 1, DEMAND A COLONOSCOPY AND A SCAN FOR THE LYMPH NODES. I did not, nor was it suggested by my doctors, and I will regret that until the day that I do die.

Yes, a colonoscopy and scan is not 100%. But they would have found no sign of the cancer, and I would have taken the odds AND NOT TAKEN THE SURGERY.

The wait and watch approach is gaining more prominense in cancer treatment centers, both here (at the nations finest cancer centers) and abroad.  I fully anticipate it becoming a standard option, sooner than later.

At your father's age, it should have been discussed by your surgeon and radiation/oncologist.

I had a couple of opinions...none of them told me how miserable life would/could become after my procedures...shame on them.

Your father will, of course, have to take into account his religious beliefs, his views on how he wants to live his life in old age, etc., but, again, I strongly suggest you discuss the wait and watch approach with him, your family, your doctors (they will probably resist...).

I will forever regret my choice, it is my sincere hope that he makes the choice that is most comfortable TO HIM, NOT THE DOCTORS.

All my best to you and your family,

jimmy

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