Saturday, February 26, 2011

Farewell my Joan

Our beloved Joan has passed on. She left us at 6.20pm yesterday.

We went into battle against the beast knowing that any treatment could only give us extra time. She was able to see our daughter married and participated in social events up until the last few weeks.

We will miss her terribly every day.

Monday, February 21, 2011

Beloved wife and mother

Joan is still with us but the Silver Chain nurses have told us that it is only hours before she goes.

See the Family Blog.

Wednesday, February 16, 2011

Stressed out

Joan is still in hospital at St John's. This is probably the first time in my life that I have felt real stress. See the family blog.

Monday, February 14, 2011

More hospital

Joan has had to be re-admitted to hospital for an infusion of electrolytes and X Rays of her chest and bowel. It is thought that she has a bowel obstruction. She is fasting until tomorrow morning before having the X Rays. The decision was made by the Silver Chain nurse who listened to her bowel gurgling to find that above a certain position there was movement, but down lower no movement or noises. We will know tomorrow. The Oncologist had previously told us that the bowel tumour was probably restricting the bowel, but to insert a stent was not practical as the bowel is constantly moving to move food 'down the line'.

Saturday, February 12, 2011

Palliative Care

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.

Wednesday, February 9, 2011


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.

Monday, February 7, 2011


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.

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.

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.