Joan is doing it tough this morning...two major vomits, extreme tiredness and weakness. Yesterday, for the first time, she told me that she wanted to be finished with all this.
This morning I took her to one of her sewing groups to say goodbye and donate a heap of books.
Last night we signed up with the Silver Chain Palliative Care Unit. Read about it on the Family Blog.
Saturday, February 12, 2011
Wednesday, February 9, 2011
ACTIQ
Yesterday was busy. We had a 3pm appointment with our financial adviser and headed off a bit earlier to collect some painkiller meds at St John’s. I helped Joan shower for the first time since diagnosis. Even a simple shower is enough to tire her so much that she has to return to bed. We have decided to contact the Silver Chain and discuss what services we need for Joan to remain at home.
The medication is named ACTIQ and is a controlled drug which is supposed to be one of the strongest self-administered pain killers. Each packet contains 3 units (something like a small lollipop) which is rubbed into the inside of the cheek. It takes about 15 minutes to dissolve and in the initial tryout yesterday, worked for about 45 minutes. Each package costs $186.10 and we pay only $5.60 because the Oncologist is prescribing it as palliative medication.
The pain Joan is experiencing is in her shoulders and lower back. We are hoping that it is not bone metastases from the liver and just muscle pain. I have given her quite a few massages and they give temporary relief. She is having a Bowen massage session on Friday morning.
Later in the afternoon, Joan’s friend Juliet visited with a lovely beef casserole for us. She is aware that Joan is having great difficulty eating anything and I will enjoy the meal(s) and not have to tell porkies about how much Joan liked it.
The medication is named ACTIQ and is a controlled drug which is supposed to be one of the strongest self-administered pain killers. Each packet contains 3 units (something like a small lollipop) which is rubbed into the inside of the cheek. It takes about 15 minutes to dissolve and in the initial tryout yesterday, worked for about 45 minutes. Each package costs $186.10 and we pay only $5.60 because the Oncologist is prescribing it as palliative medication.
The pain Joan is experiencing is in her shoulders and lower back. We are hoping that it is not bone metastases from the liver and just muscle pain. I have given her quite a few massages and they give temporary relief. She is having a Bowen massage session on Friday morning.
Later in the afternoon, Joan’s friend Juliet visited with a lovely beef casserole for us. She is aware that Joan is having great difficulty eating anything and I will enjoy the meal(s) and not have to tell porkies about how much Joan liked it.
Monday, February 7, 2011
Abdominocentesis
More than 7 litres of fluid was drained from my abdomen from Friday to Sunday. When I got home I weighed myself, and the 4 kilos I had put on over the past week or so had disappeared along with the fluid.
The drain was removed yesterday and a waterproof patch put on, but the fluid was still coming out. Kevin has a blow by blow description:
"The abdominocentesis tube out of her abdomen was removed and a large waterproof’ dressing stuck over the hole in her stomach. By the time we had arrived home the fluid pressure has forced a leak in the dressing and urine-looking fluid was running like a Queensland flood. We rang the Oncologist and he suggested we go to our pharmacy and get lots of gauze pads and change the dressing regularly until the flow slowed down.
After several attempts at stemming the flow we resorted to large incontinence pads. When Joan was in bed the flow slowed and the pad almost held the spillage overnight. This morning we rang the Oncologist’s office and the nurse/receptionist told us to come in immediately. The fix was to clean up the area around the hole and attach a small bag which can be emptied easily. There is a spare bag for me to use if somehow we damage the one stuck on Joan’s belly."
We have emptied the bag once this afternoon and the flow seems to have slowed considerably.
Apart from the visit to the hospital for the bag, I have spent most of today flat on my back with my feet raised on a pillow. I am very tired and my feet and lower legs are still swollen. Apparently this has little to do with the abdominal fluid and the remedy is basically what I have been doing today.
I still have no appetite, but I think my hair is getting thicker. I don't notice any on the pillow any more, and my scalp doesn't shine so much.
The drain was removed yesterday and a waterproof patch put on, but the fluid was still coming out. Kevin has a blow by blow description:
"The abdominocentesis tube out of her abdomen was removed and a large waterproof’ dressing stuck over the hole in her stomach. By the time we had arrived home the fluid pressure has forced a leak in the dressing and urine-looking fluid was running like a Queensland flood. We rang the Oncologist and he suggested we go to our pharmacy and get lots of gauze pads and change the dressing regularly until the flow slowed down.
After several attempts at stemming the flow we resorted to large incontinence pads. When Joan was in bed the flow slowed and the pad almost held the spillage overnight. This morning we rang the Oncologist’s office and the nurse/receptionist told us to come in immediately. The fix was to clean up the area around the hole and attach a small bag which can be emptied easily. There is a spare bag for me to use if somehow we damage the one stuck on Joan’s belly."
We have emptied the bag once this afternoon and the flow seems to have slowed considerably. Apart from the visit to the hospital for the bag, I have spent most of today flat on my back with my feet raised on a pillow. I am very tired and my feet and lower legs are still swollen. Apparently this has little to do with the abdominal fluid and the remedy is basically what I have been doing today.
I still have no appetite, but I think my hair is getting thicker. I don't notice any on the pillow any more, and my scalp doesn't shine so much.
Saturday, February 5, 2011
Human Albumin
When I left Joan this evening she was having a two-unit infusion of Human Albumin.
The fluid drain is still in and the total is now over 5 litres. When the flow slows down to a dribble, the tube will be removed and if the Onco thinks she is strong enough, she can come home. She still has swollen feet and legs from fluid retention.
Joan has discussed the disposal of her quilting/sewing books and numerous lengths of fabric. Her plan is to offer them to her many fellow stitchers for the price of a donation to the Cancer Council. Her sewing machines will be sold.
This morning when I visited her, I firmly believed that she was not going to be able to come home again. She was agitated, in pain and had a ghastly pallor. This evening she is feeling and looking better and we hope she can come home tomorrow. This dose of protein should help. The shift during the day to a private single room also cheered her up.
The fluid drain is still in and the total is now over 5 litres. When the flow slows down to a dribble, the tube will be removed and if the Onco thinks she is strong enough, she can come home. She still has swollen feet and legs from fluid retention.
Joan has discussed the disposal of her quilting/sewing books and numerous lengths of fabric. Her plan is to offer them to her many fellow stitchers for the price of a donation to the Cancer Council. Her sewing machines will be sold.
This morning when I visited her, I firmly believed that she was not going to be able to come home again. She was agitated, in pain and had a ghastly pallor. This evening she is feeling and looking better and we hope she can come home tomorrow. This dose of protein should help. The shift during the day to a private single room also cheered her up.
Wednesday, February 2, 2011
No more chemo
That's the good news. Looking forward to growing my hair back and regaining my appetite.
And the bad news? 12 months of chemo and radiation have failed to destroy the cancers. Last week's CT scan showed that the disease has progressed in both liver and lungs and there are now some lymph nodes involved. My CEA reading is again elevated - I wasn't told by how much.
The oncologist has given me "months". I intend to make the most of whatever time I have left.
And the bad news? 12 months of chemo and radiation have failed to destroy the cancers. Last week's CT scan showed that the disease has progressed in both liver and lungs and there are now some lymph nodes involved. My CEA reading is again elevated - I wasn't told by how much.
The oncologist has given me "months". I intend to make the most of whatever time I have left.
Monday, January 31, 2011
Tears in the Keyboard
Tomorrow Joan has a blood test prior to seeing the Oncologist on Wednesday. He will have the results of the CT scan and we hope that it shows at least a slowing of the tumour growth. The recent SIRT treatment which was aimed solely at the 30-something liver tumours may give us hope for more time together.
This morning there were tears as we both thought, without words, that The Man will be giving us bad news. I think Joan is ready to forgo further treatment if the oncologist decides that it will not help. In that case, we will ask about a time span and try and do a couple of things on Joan’s bucket list.
Tears in the keyboard.
This morning there were tears as we both thought, without words, that The Man will be giving us bad news. I think Joan is ready to forgo further treatment if the oncologist decides that it will not help. In that case, we will ask about a time span and try and do a couple of things on Joan’s bucket list.
Tears in the keyboard.
Saturday, January 29, 2011
Nearly the end of the cycle
I went to have a CT scan yesterday, after I had had a Bowen massage. Gail was able to relieve most of my aches and pains (leftovers from the fall, I am sure). I managed to mess up the CT appointment time again. I was convinced it was at noon and arrived 15 minutes early. WRONG! I was supposed to be there at 10.45 and had been noted as a no show. I burst into tears. However, they managed to fit me in and I had the scan.
We are hoping that this one will show the SIRT has had some effect on the liver tumours. The last scan, back in October and before the radiation, was not good - some of the liver tumours had coalesced and the lung tumours had grown. When I had my last blood test almost 3 weeks ago the CEA was higher than it has ever been, but the doctor said then that sometimes the tumours release more antigen as they die. I hope this is the case.
I will have another blood test on Tuesday and see the oncologist on Wednesday before I have another infusion. My hair loss has slowed considerably, but I expect that will resume with the next dose. I am still really tired and spend most of my time asleep or in a chair. Gail commented that I have lost muscle mass in my legs and shoulders and recommended that I make a greater effort to exercise - even walking a couple of times around the clothesline. I promised I would try.
We are hoping that this one will show the SIRT has had some effect on the liver tumours. The last scan, back in October and before the radiation, was not good - some of the liver tumours had coalesced and the lung tumours had grown. When I had my last blood test almost 3 weeks ago the CEA was higher than it has ever been, but the doctor said then that sometimes the tumours release more antigen as they die. I hope this is the case.
I will have another blood test on Tuesday and see the oncologist on Wednesday before I have another infusion. My hair loss has slowed considerably, but I expect that will resume with the next dose. I am still really tired and spend most of my time asleep or in a chair. Gail commented that I have lost muscle mass in my legs and shoulders and recommended that I make a greater effort to exercise - even walking a couple of times around the clothesline. I promised I would try.
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