Once you get relief then you will be on that rep....trust your guts and speak your mind.

keeping you in my thoughts

HB

Wow !! that really had to be a shock. Did she seem to realize her cancer was so far along??


Gerry

Pam,

I am so sorry to learn of your continuing issues. Hopefully, the reps will get their act together.

Believe me, i understand your reluctance to take the oxy; expecially because of the constipation issues. In 2012 wound us in the ER because of being impacted. Since I am on Oxycontin every 6 hrs (240mgs total daily); In an effort to avoid this happening again, I now take the Miralax twice a day (1 full dose and one half dose). It does make going out very iffy; but for me, the pain would even be worse. I also take Vallium which really helps for spasms/anxiety. For sleep, use Ambien CR. It is a lot of meds; but at least the pain is more tolerable; without them pain would be much worse.

You have so many areas to deal with. I am really gald you have a place here at Nt to be able to share and discuss what you are going thru. You express yourself so well.



Gerry

No Ger, sadly, the cancer had progressed. This we knew, but had no clue it was that far gone and her death imminent, and they paid $19,500k up front for this new treatment regime on December 22nd (its not available in the public benefit health scheme) to commence. She had just the one treatment and I'm sad, so sad she had to endure all the toxicity that goes with the treatment in her final days. No one would have opted for that had it been known just how far gone she was. We talked about the treatment and feared it would be harsh. The money is irrelevant in the big scheme of things, just harsh that with payment accepted and the mix prepared it so raised their hopes only to have them shattered within days. A cruel reality sadly so many have to face. Yes, it truly was a shock, even when Brian phoned, I thought he was just going to say hi and pass the phone to Barb. Score once again for the reaper.

Thanks Pam,

That touched "home" a bit for me. I had cancer surgery Sept., 2012. My surgeon had recommended I see an Oncologist and a doctor for Radiation treatment. I had told him I did not want any treatment. (lympnodes were clear; but the tumor that was removed was fairly large). He said he was "okay" with my decision; but first he wanted me to talk to the above doctors and if I still felt the same; at least he felt I was making an informed decision. He said when I came back for my next appointment, he had wanted me to have already seen both doctors.

I did as he suggested and saw both the Oncologist and Radiation doctors as
suggested. I still came up with the same answer; "I did not want to go thru treatment". After I told him this; he said I would have been very very
sick had I had treatment. He wouldn't say this to me prior to my seeing the doctors. He at least felt I was now making an "informed decision" and had not wanted to influence me either way.

I just feel all too often many go thru awful side effects with the hope of being cancer free. Much of their decent time is used up being terribly sick from the treatment.

I read an article a while back that mentioned research done on many cancer patients. There was a large % that thought if they had treatment their cancer would be cured. This article mentioned ...all to often doctors give patients hope and need to be more up front with them giving them a better idea of what lays ahead and how good their chances were at curing their cancer.


Gerry

Yes they do indeed need to be more upfront, I'm so sorry you have to go through all that you do Ger. You have to wonder sometimes what is gods plan for us who suffer with this often unbearable pain. Are we the guinea pigs for future life and the trials we suffer are paving the way for better health for them. You have gone through so very much.

To my mothers horror, but more recently acceptance, I've said that if it comes to chemo I will not be participating, the pain I live with now will not be cured, I awake from my bed every day often thinking what time will it be when I can get back in. I will not go to bed during the day, an ingrained habit left over from childhood. My waking moments long for the moment my evening drugs kick in and knock me out, for however brief that often is. The peace that comes with being knocked out beckons me throughout the day. Sadly, my pain wakes me, or as I more recently learned, I'm still crying in my sleep. Anyway, I won't be taking chemo so that I can continue to live this pain filled life. I know that sounds selfish and I don't mean to denigrate anyone else who undertakes chemo, for most, it is a cure to live a pain free and wonderful life. It's just not for me.

Hugs to you Gerry, this life that has chosen us obviously didn't pick us at random, I read these posts and I can see, really see there are many of us on here who are battlers and survivors. It must be gods plan, I hope so, and I hope when we face our final moments all will be revealed.

Pam, a big part of my decision was exactly what you mentioned. With this 24/7 pain and doing/taking whatever I can get thru the day is not one that I am looking to add to with Chemo (especially 6 months of nausea ).


Also the Chemo, as the Oncologist I saw was very nice; did say if I did the Chemo; there was a good chance one of the side effects (Peripheral Neuropathy) would get worse.

I, like you, do not lay down during the day; but do look forward to bedtime when along with my pain meds, take
Ambien Cr which does allow me 5 or 6 hours of pain free sleep . Tho I do dread most mornings getting up and facing another day.

I do believe at the end of this journey we are on; we wil have our reward.



Gerry

Amen! and AMEN!
Beautifully said, Ger

Agreed in all ways possible...... and that is no fluff!

So, the long awaited for appointment with my PM arrived yesterday, I say long because his secretary seemingly was unaware he had treated me in hospital in January as I was admitted under my treating NS, who spoke directly with my PM on the phone and my PM did the nerve block at one of the hospitals he practices at. The hospital will have billed medibank direct on his behalf and possibly only his accounts team were aware. Still, I'm sure he has a diary that she manages?

I followed his directions to the letter on discharge and as requested sent an email explaining any noted changes etc, the email went to his secretary (as I expected it would) no response, I phoned, the secretary briskly says he has actioned the medication authority request in the last paragraph. I get the feeling she is about to hang up. Great, but what about my pain that has increased and is increasing by the day. She says "oh he only reads 2 paragraphs at the most" I reply, it was only 2 paragraphs with the first paragraph explaining my pain.. Oh, I will have to find it and highlight the first paragraph then for him to read and he can call you back.

2 hours later she calls and says he can't do anything over the phone and we have a cancellation appt on Monday. Did I mention she's faffing around and making that Hmph sound, you know the one that people make when they don't really believe you...

Off we go to the appt along with the X-rays, sure enough there is the email and paragraph highlighted. He looks at me, then at my husband and says "hmm how do you feel, you don't look to well". "Have you had a fever?" I'm thinking, is he talking about me or my husband. "Let's have you up on the bed and have a look at you". Oh, it must be me then.

So, up on the bed, quiet for a moment and he touches a spot on my lower back, I nearly hit the roof, crickey that hurt. Touches somewhere else, somewhere else and somewhere else, yes there is pain in those places, I've marked them on the body chart in red. Silence, he goes back to the spot, touches it again, I come back down from the roof a moment later. He says "that tender spot is where the pedicel screw is" I think you have an infection.

Now I've spent most of the weekend in bed knocked out with meds. I took my full dose of painkillers on Saturday, slept all afternoon, got up at 7pm so I could take hubby to the pub and he could enjoy the game, have a drink and get back home safe n sound. We get home safely and I'm straight back to bed, up at 1pm Sunday and back in bed by 5pm Sunday. I've slept the whole time, oblivious to what's going on around me, never ever done that before. (Oh, his team won, happy days, awesome game, even I enjoyed the first twenty minutes, then I went and had a rest in the car and back in to get him when the game finished).

So back to my PM, he says we will do another block the next level up, he calls my rep there and then and asks her to call him back about the paddle, then he says he will also speak with my NS about doing the paddle as he can do the block and NS can do the paddle at the same time.

We go out to the secretary for her to schedule the procedure, I'm confused as I don't know what procedure is happening and I'm not feeling particularly well. The secretary flicks around the Screen and cheerfully says, ok booked you in for March 19th and follow up Dr appt June 6th.....

Great, I'll just put my pain on hold for 6 weeks, let's remember the 2nd nerve block was supposed to have been done one week after he did the first one on January 21. Do I sound disillusioned? I am, I'm feeling like a person who is about to once again enter the wonderful world of merry go round the hospital Pam once again not being believed.

I say to the secretary, so what procedure is he doing, she has the paper in her hand. I get the humph again and she whisks away, comes back and says the nerve block. So we have been stood at the counter now for ten minutes since we left the PM office. By chance (thank heaven) he comes out, puts his hand on my shoulder and says I will call you with the results of the blood test and we will get this procedure done quickly so we can get you feeling better, he looks at the secretary and says when are we doing it. She replies march 19, I think time stopped, he looked at her, silence fell, other patients waiting all look to the desk. He says slowly, when? She fans herself and says, ah I will uhm! I uhm.

He interrupts and says we will get you in on the other list, I have two lists, we will call you with an appointment. It won't be that far away.

So, I'm home, had another nights sleep courtesy of the hated knock out pill and I will go have the blood test shortly, I'm feeling really low and despondent. Feel queasy still which I've felt all weekend and had put down to just general malaise, maybe I do have an infection?

I just want my life back, I want to be able to go out, talk to people, meet people and have a laugh without having to go lie down in my car. My poor husband, how much more can he endure. I'm sure another round of hospital merry go round Pam not being believed will be the final straw.