I should have gone first.
Take heart that aggressive treatment for your cancer will probably reap results.
Tuesday, May 10, 2011
I am sorry.
I should have gone first.
Take heart that aggressive treatment for your cancer will probably reap results.
Wednesday, March 9, 2011
Blog is terminated
I will no longer post on Joan's Cancer Blog.
The Lock Family Blog will continue with frequent postings including reflections on my dear wife.
Kevin
The Lock Family Blog will continue with frequent postings including reflections on my dear wife.
Kevin
Thursday, March 3, 2011
requiescat in pace
The journey through cancer therapy was long and hard. The number of tumours in her liver alone totalled 30 and surgery was not an option.
Joan was accepted onto a trial using Folfox6. That was later changed to two other regimes and she was accepted into the SIRT program where minute irradiated spheres were inserted into her liver. Unfortunately nothing worked and she suffered greatly from the side effects.
Even though she lost her appetite and could eat very little she still collected recipes from the newspapers.
She was able to participate in some group functions until quite near the end of her journey.
Today is her funeral service and we are holding a wake at our place for her. my loss is almost unbearable.
Joan was accepted onto a trial using Folfox6. That was later changed to two other regimes and she was accepted into the SIRT program where minute irradiated spheres were inserted into her liver. Unfortunately nothing worked and she suffered greatly from the side effects.
Even though she lost her appetite and could eat very little she still collected recipes from the newspapers.
She was able to participate in some group functions until quite near the end of her journey.
Today is her funeral service and we are holding a wake at our place for her. my loss is almost unbearable.
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.
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.
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.
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
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.
Sunday, January 23, 2011
Home again
I came home Friday afternoon after 3 and a half days in hospital. Much relieved. The reason I was in hospital was that I fell in the bathroom on Tuesday morning and bumped my head. This is the result.
I couldn't get up, so we had to call an ambulance and they took me to emergency at Fremantle. They whacked on a collar and I had an X-ray of my neck and a CT scan of my skull. Both were OK, but they decided to contact the oncologist and he said to send me to St John of God, Subiaco for observation. There are more details on the family blog. I felt fine the next day, except that I was aching all over, both from the fall and from having to lie so still for so long on the very hard emergency ward trolley.
The one advantage of being in St John's is the food, which is remarkably good. You fill in the order form, then it arrives at the appropriate meal hours or days later. No need to think any more, and since I often don't feel like eating something a while after I have told Kevin I would like it, I could eat more. Not that my appetite even approaches previous levels, but I managed at least some of every meal - especially the sweets. Net result: 2 kilos, and I had nothing at all on Tuesday!
The gash is healing nicely and I will get the stitches out on Thursday.
I still have quite a bit of hair and it doesn't seem to be falling out in handfuls anymore. While a couple of people have suggested shaving it all off, I think I will hang on to what is there a bit longer.
I couldn't get up, so we had to call an ambulance and they took me to emergency at Fremantle. They whacked on a collar and I had an X-ray of my neck and a CT scan of my skull. Both were OK, but they decided to contact the oncologist and he said to send me to St John of God, Subiaco for observation. There are more details on the family blog. I felt fine the next day, except that I was aching all over, both from the fall and from having to lie so still for so long on the very hard emergency ward trolley.The one advantage of being in St John's is the food, which is remarkably good. You fill in the order form, then it arrives at the appropriate meal hours or days later. No need to think any more, and since I often don't feel like eating something a while after I have told Kevin I would like it, I could eat more. Not that my appetite even approaches previous levels, but I managed at least some of every meal - especially the sweets. Net result: 2 kilos, and I had nothing at all on Tuesday!
The gash is healing nicely and I will get the stitches out on Thursday.
I still have quite a bit of hair and it doesn't seem to be falling out in handfuls anymore. While a couple of people have suggested shaving it all off, I think I will hang on to what is there a bit longer.
Monday, January 10, 2011
Losing it
My hair that is. In the middle of last year my hair thinned considerably ( see a photo here), but it never got to the stage where I needed a scarf or wig to hide a bare scone. I also never noticed it actually falling out.
This time it IS noticeable and I may need scarves and wigs. Kevin noticed it first. I had been sleeping and had perspired on my pillow so he put it out in the sun - and there were handfuls of hair there. I brushed my hand over my sweaty neck and came away with more handfuls of hair. Any time I run my fingers or a brush through a bunch of hair comes away.
At this rate I will be bald in a week.
This time it IS noticeable and I may need scarves and wigs. Kevin noticed it first. I had been sleeping and had perspired on my pillow so he put it out in the sun - and there were handfuls of hair there. I brushed my hand over my sweaty neck and came away with more handfuls of hair. Any time I run my fingers or a brush through a bunch of hair comes away.
At this rate I will be bald in a week.
Saturday, January 8, 2011
Food again
We celebrated our 45th wedding anniversary yesterday with a visit to a Vietnamese restaurant. I managed to eat quite a lot. We started with pork and prawn spring rolls. There were 4 in a serving and I ate all of one. Mains were seafood braised with vegetables, yummy sliced pork cooked in a sweet-sour sauce (nothing like the deep fried pork pieces with a pineapple laden sauce that is served up under the name in most Asian eateries) and prawns in a coconut curry sauce. I was able to eat some of everything and enjoy it. Kevin has photos of us and the food on the family blog.
I am really tired again today. I did two loads of washing this morning AND hung it out, so there is some excuse, I suppose. It annoys me that I have to pace myself so much - I was going to go and do some grocery shopping as well, but just couldn't summon up the energy. Instead I sat and reread another of the JD Robb "in Death series". I am doing a lot of light reading - it doesn't matter if I doze off. I can pick them up without having to go back to find the thread again.
We see the oncologist on Wednesday and I expect to have another dose of irinotecan. I will have a blood test on Tuesday - I hope the tiredness is not due to a low blood count.
I am really tired again today. I did two loads of washing this morning AND hung it out, so there is some excuse, I suppose. It annoys me that I have to pace myself so much - I was going to go and do some grocery shopping as well, but just couldn't summon up the energy. Instead I sat and reread another of the JD Robb "in Death series". I am doing a lot of light reading - it doesn't matter if I doze off. I can pick them up without having to go back to find the thread again.
We see the oncologist on Wednesday and I expect to have another dose of irinotecan. I will have a blood test on Tuesday - I hope the tiredness is not due to a low blood count.
Sunday, January 2, 2011
Update
Happy New Year! I hope 2011 will be much better than the year just gone - I firmly believe it couldn't be worse. We usually have New Years Eve here, but I didn't feel up to it so we went to a friend's house. I faded about 8pm, so we came home and fell asleep in front of TV. I woke up to the sound of fireworks in Sydney (three hours ahead in time), so we wished each other Happy New Year and went to bed.
I am feeling much better than I did when I last wrote about Irinotecan and my reactions to it. My appetite has improved (well, it's better than it was a week or so ago) and I have no diarrhea. I am, however, really tired and am sleeping heaps (up to 16 hours a day - just like the cat!)
I am managing to eat quite a lot of fresh vegetables and seafood, as well as cereal and fruit for breakfast. No red meat. Eggs are problematical. Maureen suggested eggflips, but I loathed them when I was cancer free, so I can't see being able to take them now, especially since I vomited up the last lot of scrambled eggs I ate. Hard boiled seem OK. I had some pizza the other day, though I had to leave the anchovies.
I can always eat more when we are out. When we were at a friend's house on New Years Eve I ate quite a bit - especially naughty stuff that I would have avoided when I was so overweight. Like the fresh strawberries topped with tiny meringues - yummy! I ate five. I think the reason I can eat more in such situations is that I am not involved in either the preparation or smelling the preparation (if Kevin does the cooking). However I had quite a big bowl of salad and prawns this lunchtime which he made. Very nice, too.
I am feeling much better than I did when I last wrote about Irinotecan and my reactions to it. My appetite has improved (well, it's better than it was a week or so ago) and I have no diarrhea. I am, however, really tired and am sleeping heaps (up to 16 hours a day - just like the cat!)
I am managing to eat quite a lot of fresh vegetables and seafood, as well as cereal and fruit for breakfast. No red meat. Eggs are problematical. Maureen suggested eggflips, but I loathed them when I was cancer free, so I can't see being able to take them now, especially since I vomited up the last lot of scrambled eggs I ate. Hard boiled seem OK. I had some pizza the other day, though I had to leave the anchovies.
I can always eat more when we are out. When we were at a friend's house on New Years Eve I ate quite a bit - especially naughty stuff that I would have avoided when I was so overweight. Like the fresh strawberries topped with tiny meringues - yummy! I ate five. I think the reason I can eat more in such situations is that I am not involved in either the preparation or smelling the preparation (if Kevin does the cooking). However I had quite a big bowl of salad and prawns this lunchtime which he made. Very nice, too.
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