"Sue Saddened Wife" Continuation Thread

I haven't told him what the oncologist said and I won't. He is already making plans for a trip in the fall. I saw again, in the naturopath's eyes today, the same sympathetic look. It is hard to explain...maybe "pitying" would be more accurate. He has a wonderful nurse infusionist. She said to me that she thought he looked and seemed improved from a week or so ago. But today he had diarrhea again. He had two veggie juices so maybe this is why. No more juices for a while. What annoys me is the way the oncologist seems to think I haven't considered Don's passing. Like I am Pollyanna or delusional. I told him I am not delusional or in denial, I just believe that we need to BELIEVE and owe it to those we have promised to support in sickness and in health to do our utmost to help. Not just give up and call in the palliative people. Today, I spoke to yet another oncologist whose wife had breast cancer and who is having her treated in Mexico. Funny that, isn't it? This is the fourth one. I wonder if he recommends Mexico to his patients when he "runs out of options." They just give up on you here Don's eyes have sunken because he is so thin. I don't like it, but he is cracking jokes and had a good lunch and breakfast. Tomorrow we pick up andrographis, a Chinese herb that has been shown effective in halting cachexia. Hoping it will work. ETA Don't use andrographis as it boosts testosterone.

Post Edited (Moonlitnight) : 7/2/2015 9:43:40 PM (GMT-6)

Sue, I asked the oncologist (we were emailing each other as evidently he is not prepared to pick up the phone) WHO is responsible for looking and acting on Don's blood test since he needs iron/haemoglobin/transfusion whatever and NO REPONSE. Monday morning we see the GP who is shaking his head over all this. He doesn't get why the oncologist isn't taking any action either. I am going to call the palliative guy to see if he can arrange for some action. Don says, "We'll use him but ignore the doom and gloom talk." Last night I woke with a panic attack. Cool, calm me... the person people turn to in a crisis. Pillar of strength and calmness and all that. I can't even cry unless it's over some silly sentimental commercial or something. Tears, as Krissy said, are important and their chemical makeup has been shown to differ depending on the emotion. Sad tears contain stress hormones and other not-so-good chemicals. I am afraid to cry. Sometimes I have a little snivvel but that's it.
Enjoy the sunshine. I am going to buy some flowers today (very late this year).

Susan, how is Don's kidney? xx

Yes I am smiling...thank you! I am also boiling hot. It is 85 degrees in the house and like a swamp. I am so glad that the drain procedure went OK.

The oncologist emailed. He will have one of "his team" call us Monday to get Don in for blood tests to see if he is low on iron and/or needs a transfusion or two. I will email him tomorrow night as a reminder and tell him we don't want to fall through the cracks yet again. My dear friend (a retired nurse) emailed me to make sure he is having enough water. Apparently it's a guy thing to not drink enough. He has been slightly worse today - very sallow and weak. He did eat very well though - the usual large brekky - stopped off for poached eggs and a bowl of fruit for lunch while in the US (*sigh*) and then actually ate all of his dinner, which is a rare event. Also had 1/3 glass of Guinness, which he loathes. I guess this is a good thing.

Thanks for the pep talk, Susan. Glad things went well for your Don today! Hugs to all.

Hopefully there are a few more fish today. Today is day 2 on zytiga for Dave.We have decided 6 am for the timing of those because of the need for the stomach to be empty. Its either 1 hour before or 2-3 hrs after food. Then because we have to travel to appointments this timing will be better for Dave. I will alot of the days need to wake him up to take those pills and I hope hevcan just go back to sleep until his usual wake time. Pills drive me crazy at times with food , without food, the times to take them and the quantity of them.We average 16 pills a day before cancer Dave was on nothing!
One thing I noticed on Gary was the liver mets that is about the same time Dave has had that show up on his ct scan .Dave if he had been diagnosed with
when he probably had PC would have been in 2010 in 2009 he was probablyearly stage. The problem with Dave was that missed opportunity to get the PC when we had more options. I was telling a girl I used to go to the gym with yesterday about Daves idiotic medical care and

Hi Sue,
I remember the zytiga on empty stomach and prednisone with food. Now it's anti nausea every six hours. It sure worked though. I hope Dave gets similar results. He doesn't have lung mets, does he? We were trying to catch trout, I like German browns. I caught 4 today and Gary caught 1. Trout for dinner! Yea.

Antonia ; Do you have home care in place for Don? They should have that there and they should be able to cover alot of day to day drugs. I am glad hs apetite is ok ? I know the megace is pricey the prednisone would probably do the same to build appetite .
Beth sound like fishing was better today. As anyone heard how Krissy and Paul are ? Hope all is going well
Well I hope Don can get control of the pain Antonia . Wishing everyone a good week coming up. We had torrential rain all weekend and it was coolas well . sunshine for tomorrow !! ((HUGS )) from me to you

Antonia the oncologist can order what they call home care .It is a nurse who comes once a week or there abouts. She does B/P charts all the meds you are on. They delivered a emergency response box here a couple of weeks ago it has catheter something to help with stopping choking plus some other meds. We have decided that Dave will stay home and not go to hospice. , or hospital if we can avoid it . The home care nursing will come in daily as you need them and hospice care will provide care in a sense that someone would stay with Dave so I can still get errands done. Because Dave is not 65 the home care drug plan covers it all fragmin.pain pills , megace and almost everything else that are dr prescribed. The cost last year alone for drugs covered was 34,000 dollars. Do you have acess to a social worker at the hospitals cancer centre? I see no reason why these drugs are not being covered for you . I know the don't cover homeopathic things but for sure find out about home care. Dave feels very strongly that we shouldn't be left I dire straits becauses of cancer. We are supposed to life in a Country that supposedly has great medical.....I know for certain I dont feel bad having coverage and neither will you. Yes a million times over we would do everything to keep our men alive but being 80, broke and living on the streets should never have to be the story for any of us wives. Please Antonia find out about some assistance I don't know how any one can afford to pay what you are paying and pay bills plus put food on the table. Take care and hope this Info can help. I will google later to see if I can bring up BC programs. Love and Hugs 💙 XOXO Sue

Well the new PSA is 2,835 up from 2,389 just a few weeks ago. Antonia found out our oncologist is out of the office for over 2 weeks ..nice that he informed us of that . So who in the H is looking after Daves results and doing his file? .
Wait I forget he doesn't really want Dave as a pateint seeing as he dumped us into pallitive care Well I just wanted to vent, I have a killer head ache and will fill you in tomorrow. Bloodwork for us again tomorrow.Have a good night everyone💙💙💙

Yes your oncologist isn't the only one . When I called there yesterday the secretary told me me ya well you know he is away for over 2 weeks! News to me ! So have no idea who we actually have ...no one I guess. Sounds like Don is not getting very good care either.i hope he gets the transfusion today. It does help make them feel better . I can tell by the breathlessness In Dave its been 2 weeks since his last one. Today we did bloodwork again and o Thurs I will request the hemotologist gets those results because some one other than us should be looking at hemoglobin and platelets levels. It is crazy the way I feel most of the time about the care Dave has had. Here it is you have some one with the worst possible prognosis and its just like ....oh well!
love being sent and I am hoping Don can rally!

Yes Dave is always cold so the heat wouldn't hurt his feeling except he does get soaked when he is sleeping. It is better as last summer he would just be soaken wet all the time . The eating well is important,. Dave is eating better since the addition of prednisone .When I look at him he looks as far away from dying than what one could be . I so hope next summer we are saying remember when! This summer has been very cool here and LOTS of rain.Well bed time for me. Have a good night Love and Hugs Sue 💙 XOXO

We are back home and Don is really tired out. The three units took from 8:30 until 5 to drip in. He is still experiencing diarrhea and is feeling completely rotten because of it. I have checked everything he is getting in his supplements and food and nothing appears to be causing it. Today, he had none of my food or supplements and got a bad bout of it at the hospital. More at home. The haemoglobin level isn't measured until Tuesday. We learned that his platelets are now low and his neutrophils too. That will also be addressed next week. Fun and games... He does look a better colour though. xx

I am really mad. Don was given Flomax a couple of months ago. For reasons unknown, I missed looking up the SEs and reduced red and white blood cells are among the most common. I am taking him off it, since no one except the prescribing doctor, with whom we have no more connection, put him on it in the first place. The reduced flow is due to the prostate bulging into the bladder and he has an appointment (with yet another urologist) six weeks away. Diarrhea, unfortunately, is not an SE of this drug.

Post Edited (Moonlitnight) : 7/4/2015 8:20:53 AM (GMT-6)

Carol, that is good news that Steve is getting some form of treatment that is appealing to you. May I know what symptoms are apparently "more than 50% from cancer"? I am assuming fatigue. Don is so fatigued and has very high LDH. We start a new treatment next week but, when successful, it has often caused tumour lysis syndrome, which can be very dangerous, even fatal. The challenge is to monitor it closely as we can't have four blood tests a day, although I do have potassium and uric acid meters which I will use constantly. I will be discussing this with the palliative doc Tuesday, to see if he will step in if we have an emergency. But enough about us, I am also pleased that your ctca doc is caring. It is so very important to have someone who shows even an ounce of interest in survival.