It's been a week since the last posting and my sense is that Richard is progressing well physically. Tummy infection almost all healed up and dry. We're just changing a small dressing after Richard's shower every day. The saintly district nurse, Theresa is confident with my handling this so she might not be back until we think we can stop the dressing altogether. We're hoping that will be sometime next week. It's an important date as that is when Richard will be able to get back to swimming, an activity he is longing to resume to build up his strength and just for the shear pleasure. We've been assured that he can do this safely with his feeding tube...no problem. We might just put a gauze pad over the site and then put a waterproof bandage over it so there is no chance that it gets snagged on anything.
The cough is diminishing though there has been only slight progress with getting any phlegm up. Three days ago was the best day for that and we thought we were on a roll. Two big globs and three smaller ones in the morning. Extraordinary!! Fabulous! Hurrah! It came after Richard had been doing his inhaling of hot steaming water infused with Olbas drops. But with subsequent sessions nothing has come up. We will persist and have a few other "products" approved by Dr. Kon which we will try.
The cough is what has been getting Richard down as it uses alot of his energy and is often painful to his healing incisions. He has gone from 4000mg of paracetamol a day to just 1500 which is an amazing reduction. I have to keep reminding him that if he is feeling a bit rotten sometimes he needs to recall that the paracetamol is not masking the pain in the same way anymore! Other gentle reminders from Helen, Dr. Kon's sweetly mannered secretary, lovely nutritionist Stephanie (she and Andy flew to Thailand last night for a week..) and the queen of Practice Managers, Melinda are all encouraging Richard to accept that he is doing really well and that progress is typically slow with such a serious operation...and, the chest infection WILL GO!
It seems clear that as the antibiotics (he's on a second week long course, I think just for good measure) tend to be depressants and coupled with the trauma of the surgery as well as the huge physical adjustments regarding energy levels and physical abilities, it's no wonder he feels down alot of the time. When the sun comes out, quite literally, his mood changes. Sadly, February in southern England doesn't promise that much sunbathing time! Should we go to Spain? Morocco? Some perfect beach? We do drift there in our minds with some storytelling/visualization sessions which seems to help.
Despite eating really well Richard has lost five pounds over the past week. I put this down to a bit of diarrhea brought on most likely by the antibiotics, a bit of an interruption in the switch from Skandishakes to Fortisips and Calogen shots, the new nutrition supplements and possibly the final loss of extra body fluid as his ankles and legs have finally stopped swelling up when he is inactive. He's stopped wearing the tight white stockings. I'm pretty confident he can gain the weight back as his appetite is good.
Richard has an appointment to see Prof Hanna next Wednesday and then Dr. Kon the following Friday for a chest xray. I imagine an appointment with Prof David Cunningham, Richard's oncologist will come shortly thereafter.
So, today we are surrounded by colourful, fragrant cut flowers and blossoming bulbs of every variety courtesy of so many deeply loving friends and listening to lovely calming music. Richard is reading the Saturday papers as I type. What could be nicer? Oh...I think he's hacking up a glob! That's even better!
Saturday, 26 February 2011
Saturday, 19 February 2011
Eleventh Day at Home
Sorry not to have posted for the past three days. Been busy!
Richard's Wednesday appointment with Prof Hanna went well. Though exhausted while sitting in the waiting room, when we were called he walked up the flight of steps to be greeted by Melinda and Prof Hanna. A real showman! They were impressed. Prof Hanna reviewed everything with Richard and told him he was very pleased with the pathology reports on the bits they had removed. Apparently it shows that the cancer is very chemo sensitive which is good and if I have this right, cancer cells were not found in the extremities of the bits they removed, a very good sign. Generally very pleased with everything except the cough and continuing infection in the chest. So he said he'd set up an appointment with a chest specialist colleague at St. Mary's Hospital. Prof Hanna and a nurse inspected the belly incision and changed the dressing. They did their fair amount of poking and prodding and seemed pleased enough saying we should just keep having the district nurses attend to it. Prof Hanna said yes, stop the antibiotics for the tummy incision.
We went down a block on Harley street to see Haley, the Speech and Language Therapist for a very brief consultation in which it was decided that everything was going so well we'd wait for a few weeks before booking another appointment.
Ate out at our local with a friend and went to bed fairly early at our flat in London. Around 2:30 Richard had a coughing attack which did expel the largest amount of mucus to date, from his lungs. But it was pretty uncomfortable for him. For most of the rest of the night he sputtered and coughed trying to get more up but with not much success and we both were drained by the morning.
Despite that we got on with the day and Richard walked to his barber Michael, a good ten minute walk away while I ran some errands. Richard returned to the flat accompanied by the loving presence of Michael. His kindness is healing.
Richard got driven back to the country by a friend while I went to an appointment regarding the JoseLondon Show which I am helping to hang in April. I returned to the tail end of a lunch party with three friends which Richard had organised. We had a good, relaxed evening and a pretty good night's sleep as compared to the previous one.
On Thursday the dressing was changed and it's looking better. Melinda called and said she had an appointment for Friday afternoon to see Dr. Kon, the chest specialist at St. Mary's. We also booked an appointment to see lovely Stephanie, the nutritionist as she also offices at St. Mary's. We spent the day carrying out our routine tasks, medicines, flushes of the jujostemy (feeding) tube, meals, puddings, snacks, skandishakes, walking outside, rest, breathing exercises blah, blah, blah. Francois is cooking us delicious food, Caroline is keeping us in clean clothes and bed linen and Mark and Maisie are getting the Walled Garden into a productive state. Rosa and Yooee are watching after us in their wonderful doggy fashion.
So, after a not so good night sleeping-wise because of the cough and having lunch with a good friend who drove down from London, we drove in to the city and saw Stephanie (some new nutient rich drinks to substitute for the skandishakes) and Dr. Kon who after examining Richard wrote out a prescription for an antibiotic to fight what is technically still pneumonia, the slight infection sitting in his right lung, the one which they had to collapse for the operation. He didn't seem too concerned and expected that it should show signs of improvement in two or three days. I frantically ran to fill the prescription while Richard waited in the car and by 8pm he had the first two 5ml spoonfuls in his mouth and we drove back to Whithurst to have Francois' cottage pie and cauliflower cheese followed by amazing custard from our very own chickens eggs.
Had a bit better night, though still not great and carried on with the day seeing the wonderful district nurse at 11am for a dressing change. Things are slow but improving.
Have been having a few guests for small lunches and some friends just stopped by for a drink so it has been a nice mix of quiet and active times.
We both are trying to learn to be patient and not allow fear to overshadow the light of love all around.
Richard's Wednesday appointment with Prof Hanna went well. Though exhausted while sitting in the waiting room, when we were called he walked up the flight of steps to be greeted by Melinda and Prof Hanna. A real showman! They were impressed. Prof Hanna reviewed everything with Richard and told him he was very pleased with the pathology reports on the bits they had removed. Apparently it shows that the cancer is very chemo sensitive which is good and if I have this right, cancer cells were not found in the extremities of the bits they removed, a very good sign. Generally very pleased with everything except the cough and continuing infection in the chest. So he said he'd set up an appointment with a chest specialist colleague at St. Mary's Hospital. Prof Hanna and a nurse inspected the belly incision and changed the dressing. They did their fair amount of poking and prodding and seemed pleased enough saying we should just keep having the district nurses attend to it. Prof Hanna said yes, stop the antibiotics for the tummy incision.
We went down a block on Harley street to see Haley, the Speech and Language Therapist for a very brief consultation in which it was decided that everything was going so well we'd wait for a few weeks before booking another appointment.
Ate out at our local with a friend and went to bed fairly early at our flat in London. Around 2:30 Richard had a coughing attack which did expel the largest amount of mucus to date, from his lungs. But it was pretty uncomfortable for him. For most of the rest of the night he sputtered and coughed trying to get more up but with not much success and we both were drained by the morning.
Despite that we got on with the day and Richard walked to his barber Michael, a good ten minute walk away while I ran some errands. Richard returned to the flat accompanied by the loving presence of Michael. His kindness is healing.
Richard got driven back to the country by a friend while I went to an appointment regarding the JoseLondon Show which I am helping to hang in April. I returned to the tail end of a lunch party with three friends which Richard had organised. We had a good, relaxed evening and a pretty good night's sleep as compared to the previous one.
On Thursday the dressing was changed and it's looking better. Melinda called and said she had an appointment for Friday afternoon to see Dr. Kon, the chest specialist at St. Mary's. We also booked an appointment to see lovely Stephanie, the nutritionist as she also offices at St. Mary's. We spent the day carrying out our routine tasks, medicines, flushes of the jujostemy (feeding) tube, meals, puddings, snacks, skandishakes, walking outside, rest, breathing exercises blah, blah, blah. Francois is cooking us delicious food, Caroline is keeping us in clean clothes and bed linen and Mark and Maisie are getting the Walled Garden into a productive state. Rosa and Yooee are watching after us in their wonderful doggy fashion.
So, after a not so good night sleeping-wise because of the cough and having lunch with a good friend who drove down from London, we drove in to the city and saw Stephanie (some new nutient rich drinks to substitute for the skandishakes) and Dr. Kon who after examining Richard wrote out a prescription for an antibiotic to fight what is technically still pneumonia, the slight infection sitting in his right lung, the one which they had to collapse for the operation. He didn't seem too concerned and expected that it should show signs of improvement in two or three days. I frantically ran to fill the prescription while Richard waited in the car and by 8pm he had the first two 5ml spoonfuls in his mouth and we drove back to Whithurst to have Francois' cottage pie and cauliflower cheese followed by amazing custard from our very own chickens eggs.
Had a bit better night, though still not great and carried on with the day seeing the wonderful district nurse at 11am for a dressing change. Things are slow but improving.
Have been having a few guests for small lunches and some friends just stopped by for a drink so it has been a nice mix of quiet and active times.
We both are trying to learn to be patient and not allow fear to overshadow the light of love all around.
Tuesday, 15 February 2011
A Full Week at Home
Hard to believe we have been back home for a whole week and it's three weeks ago, as I write this, that Richard was in a deep, anesthetized sleep with Prof Hanna working diligently over him!
I think, even to Richard, it feels like our feet are at last, once again on the ground. The pesky cough is still there but diminishing. The belly infection is almost gone. Today Elizabeth from the District Nurses Assoc. came in to change his dressing. I called her a Kiwi when she is from Cape Town...oops! She only needed to put a small dressing on the lower half of the incision.
Richard is sleeping 9 hours a day, about seven at night and then a two hour nap in the late morning...eating extremely well (it almost feels like what he normally ate before the op!) doing what one does in the bathroom like he was before the op, exercising well (walked to the first cattle grid on our drive, about 500 yards, and back in the late afternoon sunshine yesterday) and it seems to me, processing the whole experience emotionally and spiritually in a healthy way.
Tomorrow we go in to London to see Prof Hanna and then Haley, our Speech and Language Therapist. I think they will both be impressed by his progress. We'll spend the night in our flat and a friend will pick Richard up and drive him back to Whithurst while I attend an appointment and dive back down a little later.
There seems to be alot less of a pressing nature to write about. Thank goodness!
PS - Nurse Ratchett has gone away to harass some other needy invalid but I fear she could show up unannounced at any time!
I think, even to Richard, it feels like our feet are at last, once again on the ground. The pesky cough is still there but diminishing. The belly infection is almost gone. Today Elizabeth from the District Nurses Assoc. came in to change his dressing. I called her a Kiwi when she is from Cape Town...oops! She only needed to put a small dressing on the lower half of the incision.
Richard is sleeping 9 hours a day, about seven at night and then a two hour nap in the late morning...eating extremely well (it almost feels like what he normally ate before the op!) doing what one does in the bathroom like he was before the op, exercising well (walked to the first cattle grid on our drive, about 500 yards, and back in the late afternoon sunshine yesterday) and it seems to me, processing the whole experience emotionally and spiritually in a healthy way.
Tomorrow we go in to London to see Prof Hanna and then Haley, our Speech and Language Therapist. I think they will both be impressed by his progress. We'll spend the night in our flat and a friend will pick Richard up and drive him back to Whithurst while I attend an appointment and dive back down a little later.
There seems to be alot less of a pressing nature to write about. Thank goodness!
PS - Nurse Ratchett has gone away to harass some other needy invalid but I fear she could show up unannounced at any time!
Sunday, 13 February 2011
Fifth Day at Home
The sun came out yesterday and we took the opportunity to get outside and enjoy it. Between walking up and down the drive we sat in the rose garden and luxuriated in the warm sunshine listening to the birdsong all around.
At 3:30 Stephanie the nutritionist who works with most of Prof Hanna's patients, and her boyfriend Andy arrived having driven down from London. What a great couple. Andy drove around the area looking at homes for sale while Stephanie quietly and patiently sat with Richard and me, answering all our questions and asking Richard her own assessment questions. The outcome was a new eating regime which liberates us from the fast paced two hour feeding schedule. Instead, seeing that Richard is doing really well and eating most everything, we are back on a five small meals a day (plus puddings) plan, plus one of the scandishakes. Basically this is what we used to do anyway! Breakfast, mid-morning snack, lunch, mid-afternoon snack/tea and then dinner. Both lunch and dinner can be followed by puddings 45 minutes later. Takes a huge amount of pressure off both me and Richard who was finding it hard to keep up. Little by little his meal portions will get bigger but really, he's doing amazingly well right now! We just had a roast Sunday lunch of chicken, potatoes, broccoli au gratin and carrots with a creamy mushroom gravy. Yum...
The ticklish cough plaguing Richard, Stephanie said was absolutely typical for this op and she immediately suggested drinking small sips of ice water. Richard found instant relief from this simple advice. She wants us to flush out the feeding tube three times a day and in a few weeks, when everyone is satisfied with Richard's nutritional progress she will just gently pull it out. Any holes in the lower intestines close within seconds and the outer skin closes within a few hours. Sounds like science fiction but we believe her.
Mother Teresa was in again and changed the dressing on Richard's belly which is looking alot better. Having a look this morning there is hardly any sign of discharge so we wait for Theresa to return to change it tomorrow.
Unbeknown to me Richard called the out-of-hours doctor to come listen to his cough so mid-morning yesterday Dr. Young arrived (nice blond young lady doctor) listened, looked, probed and said all looked well and getting some simple cough linctus (syrup) would help. Done! Richard again, greatly relieved by a professionals advice.
Had a few lovely visitors yesterday and will have about ten today spread out over the afternoon. It been a good pace and feels very right.
At 3:30 Stephanie the nutritionist who works with most of Prof Hanna's patients, and her boyfriend Andy arrived having driven down from London. What a great couple. Andy drove around the area looking at homes for sale while Stephanie quietly and patiently sat with Richard and me, answering all our questions and asking Richard her own assessment questions. The outcome was a new eating regime which liberates us from the fast paced two hour feeding schedule. Instead, seeing that Richard is doing really well and eating most everything, we are back on a five small meals a day (plus puddings) plan, plus one of the scandishakes. Basically this is what we used to do anyway! Breakfast, mid-morning snack, lunch, mid-afternoon snack/tea and then dinner. Both lunch and dinner can be followed by puddings 45 minutes later. Takes a huge amount of pressure off both me and Richard who was finding it hard to keep up. Little by little his meal portions will get bigger but really, he's doing amazingly well right now! We just had a roast Sunday lunch of chicken, potatoes, broccoli au gratin and carrots with a creamy mushroom gravy. Yum...
The ticklish cough plaguing Richard, Stephanie said was absolutely typical for this op and she immediately suggested drinking small sips of ice water. Richard found instant relief from this simple advice. She wants us to flush out the feeding tube three times a day and in a few weeks, when everyone is satisfied with Richard's nutritional progress she will just gently pull it out. Any holes in the lower intestines close within seconds and the outer skin closes within a few hours. Sounds like science fiction but we believe her.
Mother Teresa was in again and changed the dressing on Richard's belly which is looking alot better. Having a look this morning there is hardly any sign of discharge so we wait for Theresa to return to change it tomorrow.
Unbeknown to me Richard called the out-of-hours doctor to come listen to his cough so mid-morning yesterday Dr. Young arrived (nice blond young lady doctor) listened, looked, probed and said all looked well and getting some simple cough linctus (syrup) would help. Done! Richard again, greatly relieved by a professionals advice.
Had a few lovely visitors yesterday and will have about ten today spread out over the afternoon. It been a good pace and feels very right.
Friday, 11 February 2011
Third Day at Home
Things are going very well!
Physically, the little infection of the belly incision is responding well to the antibiotics and the dressing changes, the coughing is far less as Richard has learned to sit up straight or stand up when it is a problem. Slouching around on the sofa aggrivates it. (His lungs are telling him to give them space to expand!) Mother Teresa (one of our lovely Distric Nurses) was here with a colleague, Sister Sue who gave Richard a good going over and said his lungs sounded really clear. We think his coughing may be more a function of his recovering/reconnecting nerves in his throat area. The diarreah (Richard HATES me to blog about this...oh well, he isn't reading it!) has more or less gone as he is off the food bag and eating relly well.
Emotionally, yesterday was a bit tough and we were a bit weepy in the late afternoon. Gratitude, exhaustion, loss, fear of the future, processing the long days in intensive care under an oxygen mask...who knows what produces our emotional dips. But, we know they are a part of the process and a very important part to experience fully so that we can move on to something else, most often gratitude, joy and love.
So many lovely cards and amazing flowers/blosoming spring plants arriving and affirming we are surrounded by love. Amazing! Wonderful, easy visits by friends and realtions make for a real healing atmosphere.
I've become (AM!) Nurse Ratchett with my black notebook full of charts documenting Richard's nutritional progress, medications, dressing changes, weight, temperature, feeding tube twice daily flush, loo habits, exersize regime, etc (can you think of anything else I should be measuring??) and orders to "sit down and eat" or "sit up straight". All motivated by wanting a sense of well-being to be the norm. It's coming, slowly and steadily.
Physically, the little infection of the belly incision is responding well to the antibiotics and the dressing changes, the coughing is far less as Richard has learned to sit up straight or stand up when it is a problem. Slouching around on the sofa aggrivates it. (His lungs are telling him to give them space to expand!) Mother Teresa (one of our lovely Distric Nurses) was here with a colleague, Sister Sue who gave Richard a good going over and said his lungs sounded really clear. We think his coughing may be more a function of his recovering/reconnecting nerves in his throat area. The diarreah (Richard HATES me to blog about this...oh well, he isn't reading it!) has more or less gone as he is off the food bag and eating relly well.
Emotionally, yesterday was a bit tough and we were a bit weepy in the late afternoon. Gratitude, exhaustion, loss, fear of the future, processing the long days in intensive care under an oxygen mask...who knows what produces our emotional dips. But, we know they are a part of the process and a very important part to experience fully so that we can move on to something else, most often gratitude, joy and love.
So many lovely cards and amazing flowers/blosoming spring plants arriving and affirming we are surrounded by love. Amazing! Wonderful, easy visits by friends and realtions make for a real healing atmosphere.
I've become (AM!) Nurse Ratchett with my black notebook full of charts documenting Richard's nutritional progress, medications, dressing changes, weight, temperature, feeding tube twice daily flush, loo habits, exersize regime, etc (can you think of anything else I should be measuring??) and orders to "sit down and eat" or "sit up straight". All motivated by wanting a sense of well-being to be the norm. It's coming, slowly and steadily.
Wednesday, 9 February 2011
First Full Day at Home
Richard slept a full six hours while 700ml of food was pumped in. We're hoping he can get off this food as one side effect is diarrhea. His nutritionist said he could stop the food if he ate 8 small nutritious meals (each meal being about 1/4 of an average main meal portion) plus two Scandishakes (high nutrition drinks) and two litres of liquids during the day. That means every two hours starting at 7am. He missed two mini meals as I thought he only needed six a day, but he has done all the rest so tomorrow at 7am we only have to put the pump on for two hours of food. Hopefully that will be the last of the food pump and it's side effects. This food is effective as we noted today that Richard hasn't lost any weight over the past two weeks. Amazing!
The district nurse, Theresa, came to change Richard's dressing today and found it still a bit weepy so
we're treating it with antibiotics. The same thing happened when he had his laparoscopy back in October. We were also told by our local GP, to stop eating dairy for a few days and eat a little rice and pasta. On Friday we have a 12:30 appointment in London with a nutritionist who works very closely with Prof Hanna and who is the expert in dealing with Richard's post-operative condition. I think with her guidance we will get to our wellness goal even more quickly.
Richard listened to lovely music and napped a bit through the day. He walked back and forth from the morning room to our bedroom about ten times which is actually quite a bit of walking. Tomorrow we will get out and I want to get Richard in the woods as they are filling up with bird song, itself a healing treatment for those who take it in.
I worked out a food plan and menus with Francois so we can get these mini meals together with not alot of fuss. Wrote a medication and sleep log so we can help the nutritionist and clinicians with their assessments of Richard's progress.
The lesson Richard is learning from all this is patience...trusting the a little movement in the right direction is good enough.
The district nurse, Theresa, came to change Richard's dressing today and found it still a bit weepy so
we're treating it with antibiotics. The same thing happened when he had his laparoscopy back in October. We were also told by our local GP, to stop eating dairy for a few days and eat a little rice and pasta. On Friday we have a 12:30 appointment in London with a nutritionist who works very closely with Prof Hanna and who is the expert in dealing with Richard's post-operative condition. I think with her guidance we will get to our wellness goal even more quickly.
Richard listened to lovely music and napped a bit through the day. He walked back and forth from the morning room to our bedroom about ten times which is actually quite a bit of walking. Tomorrow we will get out and I want to get Richard in the woods as they are filling up with bird song, itself a healing treatment for those who take it in.
I worked out a food plan and menus with Francois so we can get these mini meals together with not alot of fuss. Wrote a medication and sleep log so we can help the nutritionist and clinicians with their assessments of Richard's progress.
The lesson Richard is learning from all this is patience...trusting the a little movement in the right direction is good enough.
Tuesday, 8 February 2011
Two Weeks After the Operation
Richard sits beside me here at Whithurst sipping a chocolate high nutrition Scandishake and watching "Big Fat Gypsy Weddings" (rather reluctantly) on the tv after eating two poached eggs just laid today by our chickens.
Yes, we're back home! A huge step that a week ago would have been difficult to imagine.
I'm too exhausted to blog...it's 11:35 pm, Richard is sleeping comfortably in bed. All is well.
Yes, we're back home! A huge step that a week ago would have been difficult to imagine.
I'm too exhausted to blog...it's 11:35 pm, Richard is sleeping comfortably in bed. All is well.
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