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.
Monday 7 February 2011
The Thirteenth Day
Richard did it! He passed the "swallow" test!
After a relaxed night, lovely care and Richard's determination to get his lungs expanded by doing blowing exercises and walking the halls as much as possible we were taken via ambulance (a cab would have done just as well!) to Wellington Hospital at 2pm accompanied by the wonderful Sheila, Richard's day nurse. After a little kerfuffle finding the correct building and with nerves almost as bad as the day of the surgery Richard had the test which had him sitting in a chair and being xrayed while he attempted to swallow some well masticated strawberry and yoghurt. Apparently it went down the right way! He has to swallow twice after every intake as the liquid tends to "pool" a bit after the first swallow right now. Then he should cough. It will all get better with practice. I was nearly jumping up and down with joy as I sat and listened to Haley's report as she went over everything with Sheila. She's happy if Prof Hanna is happy to take off the "nil by mouth" designation. Richard was quietly jubilant.
So back at our little nest in the hospital Richard rested on the bed for a bit taking everything in and then had a couple little sips of apple juice. Melinda Ziff, Prof Hanna's Practice Manager came in for a chat and said Richard could have consomme, jelly, and ice cream right now and if they go well, graduate on to mashed and minced foods. She's organising us to meet the nutritionist who knows the most about this particular operation later this week. Harley Street Clinic has a good nutritionist who we have met with and who we will see tomorrow at 2:30 before we leave for interim instructions.
So, over then next 24 hours we will be processing tomorrow afternoon's departure and the transition from cocoon to hurly-burly world.
A bit sad to leave all the loving, kind, skilled nurses, doctors, technicians, cleaners, porters and caterers but we know it's the appropriate move and feel up to the challenge. Over the next week or so Richard will still be given food and water via the tube into his lower intestine but the amount will gradually be reduced as he takes more and more of his sustenance through his own mouth, until the bag is no longer necessary. Prof Hanna wants to fatten him up so he can do well through the next cycles of chemo so wants to make sure Richard is doing well with eating before he takes out the tube.
Besides the fabulous medical care we want to thank all of you who have been silently intending, praying, wishing good things, focusing good energy on your mental picture of Richard. It all seems to be working in concert to produce a picture of steady recovery to health.
After a relaxed night, lovely care and Richard's determination to get his lungs expanded by doing blowing exercises and walking the halls as much as possible we were taken via ambulance (a cab would have done just as well!) to Wellington Hospital at 2pm accompanied by the wonderful Sheila, Richard's day nurse. After a little kerfuffle finding the correct building and with nerves almost as bad as the day of the surgery Richard had the test which had him sitting in a chair and being xrayed while he attempted to swallow some well masticated strawberry and yoghurt. Apparently it went down the right way! He has to swallow twice after every intake as the liquid tends to "pool" a bit after the first swallow right now. Then he should cough. It will all get better with practice. I was nearly jumping up and down with joy as I sat and listened to Haley's report as she went over everything with Sheila. She's happy if Prof Hanna is happy to take off the "nil by mouth" designation. Richard was quietly jubilant.
So back at our little nest in the hospital Richard rested on the bed for a bit taking everything in and then had a couple little sips of apple juice. Melinda Ziff, Prof Hanna's Practice Manager came in for a chat and said Richard could have consomme, jelly, and ice cream right now and if they go well, graduate on to mashed and minced foods. She's organising us to meet the nutritionist who knows the most about this particular operation later this week. Harley Street Clinic has a good nutritionist who we have met with and who we will see tomorrow at 2:30 before we leave for interim instructions.
So, over then next 24 hours we will be processing tomorrow afternoon's departure and the transition from cocoon to hurly-burly world.
A bit sad to leave all the loving, kind, skilled nurses, doctors, technicians, cleaners, porters and caterers but we know it's the appropriate move and feel up to the challenge. Over the next week or so Richard will still be given food and water via the tube into his lower intestine but the amount will gradually be reduced as he takes more and more of his sustenance through his own mouth, until the bag is no longer necessary. Prof Hanna wants to fatten him up so he can do well through the next cycles of chemo so wants to make sure Richard is doing well with eating before he takes out the tube.
Besides the fabulous medical care we want to thank all of you who have been silently intending, praying, wishing good things, focusing good energy on your mental picture of Richard. It all seems to be working in concert to produce a picture of steady recovery to health.
Sunday 6 February 2011
The Twelfth Day
A lovely relaxed Sunday following the best sleeping night yet.
Five visitors at a good pace. A nap in the early afternoon followed by an "outing" down to Starbucks on Marlybone High Street accompanied by a wheel chair for a little assist. Then a drive around Regents Park just to see the sights of the world at large denied over the last twelve days. This was possible as Richard is taken off the feeding bag for four hours every day. It was fun and restorative.
Just saw a team of doctors and the Sister on duty doing their rounds. Did a little drink test and Richard's swallowing, though better, is still bit lazy. It will come as the nerves and muscles get ever more used to their new situation.
Chest infection under control, more protein showing up in the blood tests, all good indications.
We're looking forward to another good night's sleep and then seeing the nutritionist and the physiotherapist and then on to the swallow test. We've got our work cut out for us on the start of another work week!
Five visitors at a good pace. A nap in the early afternoon followed by an "outing" down to Starbucks on Marlybone High Street accompanied by a wheel chair for a little assist. Then a drive around Regents Park just to see the sights of the world at large denied over the last twelve days. This was possible as Richard is taken off the feeding bag for four hours every day. It was fun and restorative.
Just saw a team of doctors and the Sister on duty doing their rounds. Did a little drink test and Richard's swallowing, though better, is still bit lazy. It will come as the nerves and muscles get ever more used to their new situation.
Chest infection under control, more protein showing up in the blood tests, all good indications.
We're looking forward to another good night's sleep and then seeing the nutritionist and the physiotherapist and then on to the swallow test. We've got our work cut out for us on the start of another work week!
Saturday 5 February 2011
The Eleventh Day
Everything proceeding well for a projected Tuesday morning discharge. Sounds sticky, but I'm confident it will all go smoothly!
Prof Hanna said Richard could go home on Tuesday after the Wellington visit but I think Richard wants to process this transition home very deliberately. A rather new approach for our dear Richard!
Yesterday, after a full day of 12 visitors, physio, nebulisers, drips, etc, etc we both got better sleep than any day previous. I missed the nutritionist meeting but there will be another on Monday and Francois took audio notes on his iphone which he then email to me. Amazing! Dr. Patel came while I was gone to examine Richard and said regarding his pneumonia, "a lesser man would probably have succumbed."
Today, when I left around 3:30 to come to the flat we'd already had nine visitors, a shower, dressing changes, meds, a walk around the corridors and a meeting with Dr. Patel, the day duty doctor and Prof Hanna who all arrived around the same time. They agreed to take Richard off a few medications and proceed towards a Tuesday discharge. Prof Hanna examined Richard's incisions and had the sister on duty take out all the staples in both the front and back incisions. So now he only has a dressing on his front incision as it is not yet completely dry, but that's it! Still has his iv port on right wrist and the feeding tube but we're getting there.
Apparently, regardless of the outcome of the swallowing tests on Monday we will go home and Richard will start to drink and then eat slowly with special techniques determined by the test data, all the while supported by the nutrition from the feeding tube. I will be administering the food which is to be delivered along with the pump to Whithurst on Monday. I've been watching and training with the nurses and feel pretty competent. Prof Hanna told me I would have no problem...it's not at all difficult and you can't really mess anything up.
Richard and I were talking about employing a private nurse for a few days or a week but Prof Hanna smiled and said we didn't really need to, we would be able to handle it easily. I know he's right and I feel he knows how important it is that we assume the responsibility for Richard's well being as soon as possible. The final step will be my releasing Richard to assume that responsibility for himself just as soon as he feels ready. Might have to give him (and myself) a little nudge but it will be a gentle one! All will be accomplished in the fullness of time.
Thank you all for your continuing prayers and good energy!
Prof Hanna said Richard could go home on Tuesday after the Wellington visit but I think Richard wants to process this transition home very deliberately. A rather new approach for our dear Richard!
Yesterday, after a full day of 12 visitors, physio, nebulisers, drips, etc, etc we both got better sleep than any day previous. I missed the nutritionist meeting but there will be another on Monday and Francois took audio notes on his iphone which he then email to me. Amazing! Dr. Patel came while I was gone to examine Richard and said regarding his pneumonia, "a lesser man would probably have succumbed."
Today, when I left around 3:30 to come to the flat we'd already had nine visitors, a shower, dressing changes, meds, a walk around the corridors and a meeting with Dr. Patel, the day duty doctor and Prof Hanna who all arrived around the same time. They agreed to take Richard off a few medications and proceed towards a Tuesday discharge. Prof Hanna examined Richard's incisions and had the sister on duty take out all the staples in both the front and back incisions. So now he only has a dressing on his front incision as it is not yet completely dry, but that's it! Still has his iv port on right wrist and the feeding tube but we're getting there.
Apparently, regardless of the outcome of the swallowing tests on Monday we will go home and Richard will start to drink and then eat slowly with special techniques determined by the test data, all the while supported by the nutrition from the feeding tube. I will be administering the food which is to be delivered along with the pump to Whithurst on Monday. I've been watching and training with the nurses and feel pretty competent. Prof Hanna told me I would have no problem...it's not at all difficult and you can't really mess anything up.
Richard and I were talking about employing a private nurse for a few days or a week but Prof Hanna smiled and said we didn't really need to, we would be able to handle it easily. I know he's right and I feel he knows how important it is that we assume the responsibility for Richard's well being as soon as possible. The final step will be my releasing Richard to assume that responsibility for himself just as soon as he feels ready. Might have to give him (and myself) a little nudge but it will be a gentle one! All will be accomplished in the fullness of time.
Thank you all for your continuing prayers and good energy!
Friday 4 February 2011
The Ninth and Morning of the Tenth Day
Are we all getting a little "blogged out"?
Richard's been doing his physio, walking around, blowing in this little tube game-like thingy (technical term) trying to cough and generally being a good boy. It's paying off and his breathing is alot less congested sounding to me...no rattling chest. All his functions are good and he's gaining more strength every day. Just an hour or so ago after his shower, dressings changes and new clothes Francois and I walked with a tubeless Richard (they just disconnect the food bag) around the ward corridor, stopped in to say hi to Paul, another patient of Prof Hanna's who's had the same op and who thinks he's being discharged today, carried on down the lift to the reception area for a breath of air, strolled back to the ICU ward where he got a hug from Googoo, one of his magnificent nurses and then went back upstairs to the room. 20-25 minutes of good exercise. I took his blood saturation levels when we got back and they were at 94-95...excellent. He's still having to take a tiny bit of oxygen when he's laying down as lungs don't operate at full capacity in that position.
Richard slept more last night. About three hours from 10:30 - 1:30 and then probably another hour or so in there til 7am. So that's getting better. No strangled/coughing in the night either, thank goodness.
The outpouring of loving concern expressed in flowers, plants, cards, crystals, rose water sprays, books, etc is overwhelming! It has made a very beautiful physical display on his wide window sill. Visits are flowing with a healthy, reasonable pace...we just wish we had some more chairs!
Richard is scheduled to go to the Wellington Hospital at 2:30pm, this coming Monday for an assessment of his swallowing function in the specialist unit. Haley, his Speech and Language Therapist, comes from there and it is where they can then see via xray and some special liquid what's actually happening and then be able to treat it with specific exercises. My feeling is that they are also just giving it time to repair naturally, as the inner bruising of the controlling nerve and muscle tissue subsides. He gets to ride there in an ambulance which he's quite looking forward to!
Claire, his physiotherapist told him today that he was doing well and to keep up his hourly blowing/sucking exercises, keep walking and to stretch his limits just a little each time being careful not to overdo it.
There's supposed to be a training meeting with his nutritionist this afternoon so we can be prepared for the eventuality of his eating and drinking at home even if that, for the moment, is hooking up the nutribag.
All seems to be moving in a positive direction.
Richard's been doing his physio, walking around, blowing in this little tube game-like thingy (technical term) trying to cough and generally being a good boy. It's paying off and his breathing is alot less congested sounding to me...no rattling chest. All his functions are good and he's gaining more strength every day. Just an hour or so ago after his shower, dressings changes and new clothes Francois and I walked with a tubeless Richard (they just disconnect the food bag) around the ward corridor, stopped in to say hi to Paul, another patient of Prof Hanna's who's had the same op and who thinks he's being discharged today, carried on down the lift to the reception area for a breath of air, strolled back to the ICU ward where he got a hug from Googoo, one of his magnificent nurses and then went back upstairs to the room. 20-25 minutes of good exercise. I took his blood saturation levels when we got back and they were at 94-95...excellent. He's still having to take a tiny bit of oxygen when he's laying down as lungs don't operate at full capacity in that position.
Richard slept more last night. About three hours from 10:30 - 1:30 and then probably another hour or so in there til 7am. So that's getting better. No strangled/coughing in the night either, thank goodness.
The outpouring of loving concern expressed in flowers, plants, cards, crystals, rose water sprays, books, etc is overwhelming! It has made a very beautiful physical display on his wide window sill. Visits are flowing with a healthy, reasonable pace...we just wish we had some more chairs!
Richard is scheduled to go to the Wellington Hospital at 2:30pm, this coming Monday for an assessment of his swallowing function in the specialist unit. Haley, his Speech and Language Therapist, comes from there and it is where they can then see via xray and some special liquid what's actually happening and then be able to treat it with specific exercises. My feeling is that they are also just giving it time to repair naturally, as the inner bruising of the controlling nerve and muscle tissue subsides. He gets to ride there in an ambulance which he's quite looking forward to!
Claire, his physiotherapist told him today that he was doing well and to keep up his hourly blowing/sucking exercises, keep walking and to stretch his limits just a little each time being careful not to overdo it.
There's supposed to be a training meeting with his nutritionist this afternoon so we can be prepared for the eventuality of his eating and drinking at home even if that, for the moment, is hooking up the nutribag.
All seems to be moving in a positive direction.
Thursday 3 February 2011
The Eighth and morning of the Ninth Day
Things seem to be progressing nicely now.
I got back to the hospital around 4:30 yesterday afternoon. Jill, Richard's sister and Mike, her partner were there with him having a good visit. He'd already had three other visitors and was to have two or three more during the course of the afternoon and early evening. More lovely cards and beautiful flowers arrived...his window sill is chock a block.
He'd had more physio and they had reduced his oxygen to just 2% indicating that his lungs are doing what they need to. No real news on the eating and drinking front as I think they are just giving it a few days to allow the natural healing to occur when everything will reset itself.
Francois has been a guardian angel and keeps everything ticking over in a positive way. He left to stay in our flat, I got some dinner sent in and Richard fell into a delicious early sleep. We decided "sleep when sleepy" was the best policy in trying to get back to a pre-operative pattern. The peace and quiet in the room was palpable.
Dr Patel and the duty doctor came in for a visit and said things were looking good and then a bit later Prof Hanna came in and Richard exhibited his re-found agility by standing up and running a bit in place. Prof Hanna again indicated that if things keep going the way they are Richard might be discharged by the weekend. He must be pretty confident that his eating and drinking are going to be restored momentarily. But he said, we won't rush anything. He'd be sure everything was a "go" before discharging. Brilliant!!!! Prof Hanna told us he was off for Edinburgh to lecture on Thursday and would return late Thursday or Friday morning to see Richard.
Rosalind, our sweet night nurse got Richard's three things, paracetamol, antibiotics, food bag and nebuliser all done and dusted so we could get to sleep straight through. Richard had a little choking fit as the nebliser started to bring things up his bronchial tubes, which is a good sign. We're more relaxed now so, it came and went without incident.
The night was easier for both of us but I think a normal sleeping pattern will be a week or so away.
This morning Richard had a sponge bath by two lovely nurses, had his dressings changed, given new stockings and gown and all his morning medicines. The "Impovement of the Day" award goes to having the oxygen taken away as his oxygen saturation level is now normal! One less tube! Now he just has the feed bag to drag around. Perhaps this experience is teaching Richard patience as he has been an excellent patient throughout!
Richard says he is going to be able to tell visitors that he has to go to sleep when he feels tired because there does seem to be the danger of numbers of well intentioned friends showing up at the same time. If that happens to anyone who is yet to visit, please know that Richard does want to see you but his healing process is still very much on-going and rest is a huge part of it so "short and sweet" is what it must be. Literally, just seeing your faces and hearing your voices for a minute or two is enough right now. There will be plenty of time for real visiting later on. And if I have to, God forbid, I might ask that some people come back another day if it feels like it's getting to be too much. (What me, a control freak?? How very dare you!) To avoid this I ask that you call or text Richard's mobile 07770225536 or the room 415 phone before you come up to the room. You all are a big part of the healing process too but the balance has to be right.
I just had lunch around the corner and the waiter who is a friend of ours has a new tattoo on his arm. "Memento Vivare". Remember to live. I will tell Richard.
I got back to the hospital around 4:30 yesterday afternoon. Jill, Richard's sister and Mike, her partner were there with him having a good visit. He'd already had three other visitors and was to have two or three more during the course of the afternoon and early evening. More lovely cards and beautiful flowers arrived...his window sill is chock a block.
He'd had more physio and they had reduced his oxygen to just 2% indicating that his lungs are doing what they need to. No real news on the eating and drinking front as I think they are just giving it a few days to allow the natural healing to occur when everything will reset itself.
Francois has been a guardian angel and keeps everything ticking over in a positive way. He left to stay in our flat, I got some dinner sent in and Richard fell into a delicious early sleep. We decided "sleep when sleepy" was the best policy in trying to get back to a pre-operative pattern. The peace and quiet in the room was palpable.
Dr Patel and the duty doctor came in for a visit and said things were looking good and then a bit later Prof Hanna came in and Richard exhibited his re-found agility by standing up and running a bit in place. Prof Hanna again indicated that if things keep going the way they are Richard might be discharged by the weekend. He must be pretty confident that his eating and drinking are going to be restored momentarily. But he said, we won't rush anything. He'd be sure everything was a "go" before discharging. Brilliant!!!! Prof Hanna told us he was off for Edinburgh to lecture on Thursday and would return late Thursday or Friday morning to see Richard.
Rosalind, our sweet night nurse got Richard's three things, paracetamol, antibiotics, food bag and nebuliser all done and dusted so we could get to sleep straight through. Richard had a little choking fit as the nebliser started to bring things up his bronchial tubes, which is a good sign. We're more relaxed now so, it came and went without incident.
The night was easier for both of us but I think a normal sleeping pattern will be a week or so away.
This morning Richard had a sponge bath by two lovely nurses, had his dressings changed, given new stockings and gown and all his morning medicines. The "Impovement of the Day" award goes to having the oxygen taken away as his oxygen saturation level is now normal! One less tube! Now he just has the feed bag to drag around. Perhaps this experience is teaching Richard patience as he has been an excellent patient throughout!
Richard says he is going to be able to tell visitors that he has to go to sleep when he feels tired because there does seem to be the danger of numbers of well intentioned friends showing up at the same time. If that happens to anyone who is yet to visit, please know that Richard does want to see you but his healing process is still very much on-going and rest is a huge part of it so "short and sweet" is what it must be. Literally, just seeing your faces and hearing your voices for a minute or two is enough right now. There will be plenty of time for real visiting later on. And if I have to, God forbid, I might ask that some people come back another day if it feels like it's getting to be too much. (What me, a control freak?? How very dare you!) To avoid this I ask that you call or text Richard's mobile 07770225536 or the room 415 phone before you come up to the room. You all are a big part of the healing process too but the balance has to be right.
I just had lunch around the corner and the waiter who is a friend of ours has a new tattoo on his arm. "Memento Vivare". Remember to live. I will tell Richard.
Wednesday 2 February 2011
The Seventh and morning of the Eighth Day
Couldn't get online last night...sorry.
It's all getting to be a bit of a blurr.
Yesterday all the doctors agreed that Richard would be better off upstairs in a private room rather than remaining in ICU even though the outcome of his pneumonia was not completely certain. Richard told them that he had not slept a wink in four days. This, undoubtedly has been affecting his thinking, his mood, the entire healing process. While doctors and nurses have been telling him that he is going to be fine, not to worry, he has been fearing the opposite.
All his vital signs are good. He's a bit anaemic and the congestion in his lungs has not shifted significantly, plus he still cannot eat or drink. Sounds horrible, but considering what his body has been through and that he is now only connected to oxygen (only 6% as opposed to 15% three days ago), feeding tube into upper intestine (2000kcal a day with hydration) and has a cannula on his right hand with ports to connect iv antibiotics and paracetamol , (his only pain killer) that's not too bad! He says he's doesn't feel hungry and is constantly swishing water about in his mouth and then spitting it out to keep it moist and feel like he's drinking. He looks entirely normal (why are some of you laughing?) to me! His mobilization is improving exponentially. He's going to the loo on his own. We put the little two pronged nose oxygen nozzle on him today so his face has been freed up. So, really allot of progress.
Yesterday he had his SALT assessment by a lovely Kiwi, Hilary. Essentially what it showed was that his epiglottis (muscle flap) and vocal chords which overlay each other and keep food and liquids flowing into the esophagus and not the bronchial passages is not functioning properly at the moment which the doctors believe is down to bruising of the muscles and nerve, so they're doing some more investigations and frankly just waiting to see if it corrects itself which is what I think will happen. This is why he can't eat or drink yet and also why he hasn't been able to perform the helpful act of coughing up the phlegm in his lungs. It will get better each day is what I believe and what the doctors have told us.
Just two more things before nap time.
Please text me before coming in to visit. There is the potential for visitations to get out of hand and Richard, as most of you know, has a hard time restricting his socializing! He's indicated to me that it's not quite time to open the doors fully. Both of us though, want to say how much everyone's incredible outpouring of love has meant. The prayers that people are saying for Richard all over the world, just that positive intention, like someone holding your hand when you are scared, is getting through. Thanks for the cards, beautiful flowers, supportive emails, texts and telephone calls!!!
Lastly, the roller coaster ride nature of Richard's journey so far was reflected in a frightening incident last night which ultimately resolved itself in a positive affirmation. Around 10pm after getting settled in the private room and meeting our night nurse, Beverley, Richard was dosing and I was trying to get on the computer. His yawns sound a bit like someone is stabbing him right now for some reason but they come and are over in a few moments. This particular yawn though kept on, and I looked up to see him writhing in his bed gasping and trying to cough. I ran to the bed and pressed the nurses button and gently hit his back and said, calm down, I'm getting the nurse, you'll be ok all while he was gasping for breath in an extremely distraught way. It seemed like something had gotten loose in his chest and was clogging his airways. Beverly came in a minute or so and by that time he had recovered somewhat only to have two more fits which he said he could feel coming and which ended in a little bit of discharge. We asked that a doctor be called and calmed ourselves down as his breathing resumed in a normal way. About 30 minutes later Prof Hanna, who had been doing his rounds, and the duty doctor came into the room. Prof Hanna sat on the bed and listened to the story and examined Richard. I told him about his SALT assessment earlier in the day when Richard had drunk three tiny sips of a starchy liquid, two of which seemed to go down the bronchial passages, or so the therapist said. Dr. Hanna after a few minutes deliberation said. You're fine. Don't worry. If that happens again just try to be calm. Nothing can go wrong. He smiled and said, you're doing well. You might even be back home by this weekend! Richard rolled his eyes a bit in humoured disbelief. And so it goes.
I was able to spend the night on a cot in his room and had my eyes and ears attuned to him the whole night just in case there was another episode which, thankfully, there wasn't. We both slept fitfully, but for Richard, I think cumulatively he must have gotten a good four or five hours sleep.
So today there is another SALT consultation, the doctors pow wow, the physio, a few scheduled visitors, and hopefully some more sleep!!!
Francois came up from Whithurst and is staying with him in the room while I get some sleep in the flat and gather a few things together. Francois got me on the hospital wifi so I should be able to post more regularly.
Lastly, the roller coaster ride nature of Richard's journey so far was reflected in a frightening incident last night which ultimately resolved itself in a positive affirmation. Around 10pm after getting settled in the private room and meeting our night nurse, Beverley, Richard was dosing and I was trying to get on the computer. His yawns sound a bit like someone is stabbing him right now for some reason but they come and are over in a few moments. This particular yawn though kept on, and I looked up to see him writhing in his bed gasping and trying to cough. I ran to the bed and pressed the nurses button and gently hit his back and said, calm down, I'm getting the nurse, you'll be ok all while he was gasping for breath in an extremely distraught way. It seemed like something had gotten loose in his chest and was clogging his airways. Beverly came in a minute or so and by that time he had recovered somewhat only to have two more fits which he said he could feel coming and which ended in a little bit of discharge. We asked that a doctor be called and calmed ourselves down as his breathing resumed in a normal way. About 30 minutes later Prof Hanna, who had been doing his rounds, and the duty doctor came into the room. Prof Hanna sat on the bed and listened to the story and examined Richard. I told him about his SALT assessment earlier in the day when Richard had drunk three tiny sips of a starchy liquid, two of which seemed to go down the bronchial passages, or so the therapist said. Dr. Hanna after a few minutes deliberation said. You're fine. Don't worry. If that happens again just try to be calm. Nothing can go wrong. He smiled and said, you're doing well. You might even be back home by this weekend! Richard rolled his eyes a bit in humoured disbelief. And so it goes.
I was able to spend the night on a cot in his room and had my eyes and ears attuned to him the whole night just in case there was another episode which, thankfully, there wasn't. We both slept fitfully, but for Richard, I think cumulatively he must have gotten a good four or five hours sleep.
So today there is another SALT consultation, the doctors pow wow, the physio, a few scheduled visitors, and hopefully some more sleep!!!
Francois came up from Whithurst and is staying with him in the room while I get some sleep in the flat and gather a few things together. Francois got me on the hospital wifi so I should be able to post more regularly.
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