The 22nd of March start date for the final three cycles of chemo was postponed until today, a week later. This, after we had driven up the night before, gone to the Marsden, given blood to be tested and had a somewhat lousy night's sleep at the flat before returning the following morning to the third floor Private Day Patients room for the treatment. Lovely Claire put the cannula in Richard's arm and then we waited for a bit. Dr Mochlosky, one of Prof Cunningham's team came and told Richard that his red blood cell count was low, at 10 whatevers, when it should have been around 12. He was anemic and it was borderline blood transfusion territory. Because Richard was feeling exhausted the team decided to put it off for a week much to our secret delight. A good call, we both thought. Time to consolidate Richard's recovery, let the much improved cough lessen even more and just have some time off.
So the past week Richard laid out in the spring sunshine which there thankfully was plenty of. He got a tan so doesn't look so anemic.
In my zeal, on Tuesday I called our sweet nutritionist Stephanie and told her of Richard's anemia. She said she would send me some diet advice and would order some iron pills to help. We got iron rich animal derived foods (haem iron)...liver, red meat, and combined with iron rich vegetable foods (non haem iron) like tomatoes to help boost things. On Friday we got the iron tablets and Richard took one in the afternoon. Almost straight away he got diarrhea but we didn't put it together until Sunday night that the tablets probably were the cause. I will try to remember to read the tablet literature next time though in the list of side effects it lists constipation and then diarrhea. Who knew?
This morning in his special chair at the Marsden he was once again readied with the cannula. We hadn't made it in the previous afternoon so we had to wait for blood tests. But then, when Dr J (another of Prof Cunningham's team) heard about Richard's continuing diarrhea he ordered an xray and asked that he be moved to a private room in case he had the norovirus.
It turns out that the xray showed there is still a little infection in his right lung which Dr. J didn't seem too worried about. Surprisingly, and in a rather contradictory way, his red blood cell count is now at 11.2 which Dr J said was about as good as it gets so soon after a surgery like Richard's. It was decided not to put him on antibiotics until they do a molecular test on a stool sample but did prescribe some anti-diarrhea pills. We are to call early Thursday afternoon to see if the diarrhea has subsided so we can go back in to start the chemo on Friday.
It's amazing how spirits dip and then soar with different medical pronouncements. Boo, that there is still some indication of a chest infection. Yipee, that the red blood count is up to 11.2! Hard to find the path to emotional well being within the twists and turns of bodily changes. There does seem to be some consolation though, that in a few short months the treatment will be done and the prospect of health will be realised.
On the lighter side, Richard is making some amazing sounds as his newly arranged esophagus and stomach are marrying with their surroundings. His cough has turned into a kind of growl with quite a few subtle nuances. Very handy to fend off muggers!
He's often really physically tired and feels fed up with the whole thing. Wants to get rid of his feeding tube which he is faithfully flushing three times a day. Wants to be able to travel again. Wants to be able to sit on the rider mower and do the whole lawn in two hours like he used to (he did one hour last week and then had to stop, exhausted). Everybody keeps reminding him that he's doing brilliantly after 14 hours of surgery but sometimes that's not enough to pick his spirits up. He acknowledges it could be worse as we watch the news reports from Japan and Libya... and the days pass with the promise that one day we might hear the pronouncement that he is cancer free. We talk about the fact that on that day he might just step off the corner and get hit by a bus! The moral of course is, live in the present moment as that's all there ever is. Easy to say.
Tuesday, 29 March 2011
Saturday, 12 March 2011
Staying the Course
Two weeks has passed and Richard's physical state has changed significantly in some areas and not too much in others.
His belly incision dried up a while ago, so no more dressings and he finally got to get into the pool! Since the week before last he's worked up to over fourty laps (about 45' lengths) which he does gently and takes him 30 minutes. He then does push ups and has gotten up to 10 at a time. Not bad, most people would agree! He's not being fanatical about it and in fact has not swum for the past two days.
He also is no longer on any pain medication. That stopped about ten days ago and he seems not to miss it at all. I have also stopped filling in my endless charts as there doesn't seem to be much point. Richard is seeing to his three daily flushes of the jejostomy (feeding) tube, he gets his antibiotics three times a day and his new congestion medicine two times a day and takes his tummy acid pills in the evening just before bed. He's also been largely responsible for his mid-morning snack, his supplement drinks, his yokut (active culture yogurt drink) his mid afternon snack (tho' this one is harder to remember as napping sometimes interferes) and his twice daily steam inhalations. Besides all this Richard has also resumed driving and took himself to the Loxwood Surgery to see his GP so he coould listen to his chest. He's quite good at picking people up at the train station, as well!
His weight has stayed about the same after he lost that five pounds a couple of weeks ago. To me he appears to be eating quite well. He has diarreah about every other day but we put that down to the antibiotics.
We saw Dr Kon, his chest doctor, at St. Mary's a week ago and after taking an xray and letting us examine it with him he concluded that it would be best to continue the antibiotics for another two week course as, though improved, there is still a bit of infection in the lungs... mostly in the right one which had been collapsed for the op. So, I guess, technically Richard still has pneumonia. Dr. Kon also gave Richard a perscription for something that is supposed to help expectorate the mucus sitting in the lungs. So far it is not hugely apparent that it is having any effect. Richard is still coughing what seems to me less, though Richard declares is still the same. I do know that it now only takes him about 15-30 minutes of coughing to settle at night and then he is quiet and peaceful until about 7:30am.
This past Wednesday we went in to see Prof Hanna on Harley Street. Richard was feeling particularly exhausted (I think from the swimming) so just decided to lay down on the floor in front of the receptionists desk using my backpack as a pillow. Richard is still a wonderful eccentric. I had to just smile and nod my head at the smart ladies and gentlement who arrived and found a body in the fetal position laying at their feet!
Inside the treatment room Prof Hanna asked how everything was going and stitched back the three places on the jejostomy tube that keep it attached to Richard's skin so it won't come out. The previous week Richard was doing a flush in a rather relaxed position and not having much success getting the plunger down. I noticed that the tube was coming out (about 1 1/2") of his belly. That's when I screamed at him to get up! I thought that it was just a short length inside and was ready to pop out but have since found out that its about 12" of tube inside him, so no wories.
Prof Hanna thinks Richard is doing really well and again said he was not suprised that Richard developed pneumonia after the op but they had to do it when they did.
Yesterday we saw Prof David Cunningham, Richard's excellent oncologist at the Royal Marsden. He reviewed a CT scan Richard had done on Wednesday before seeing Prof Hanna. It showed two little patches of infection in both lungs but everything else seemd good. The chemo is now set to begin March 22nd if Richard's chest has suitably improved.
I think the continued chest problems which manifest as a cough and a slightly painful tightness are getting Richard down psychologically. That's also coupled with knowing he has to get through the 63 days of chemo which Prof Cunningham has warned might not be tolerated quite as easily as the first rounds. There is also the risk that Richard will become neutropenic (no immune system) and pick up pneumonia again during the chemo. So, for the past few days he's felt pretty down and today disolved into tears muttering that he didn't think he could make it. I, of course, try to rationalise with him....that he IS doing better; there IS progress with the chest infection; his cough IS a lot less. But I realise what I realy need to do is just listen and acknowledge his suffering and fear.
We talk about going away to the sun for a few days but the prospect of getting on an airplane which at the best of times usually ends up giving Richard some illness, makes us reconsider. There has been some idle talk about renting a private jet! Who knows. I think I'll just have faith and hope that a benign power will work this one out for us.
His belly incision dried up a while ago, so no more dressings and he finally got to get into the pool! Since the week before last he's worked up to over fourty laps (about 45' lengths) which he does gently and takes him 30 minutes. He then does push ups and has gotten up to 10 at a time. Not bad, most people would agree! He's not being fanatical about it and in fact has not swum for the past two days.
He also is no longer on any pain medication. That stopped about ten days ago and he seems not to miss it at all. I have also stopped filling in my endless charts as there doesn't seem to be much point. Richard is seeing to his three daily flushes of the jejostomy (feeding) tube, he gets his antibiotics three times a day and his new congestion medicine two times a day and takes his tummy acid pills in the evening just before bed. He's also been largely responsible for his mid-morning snack, his supplement drinks, his yokut (active culture yogurt drink) his mid afternon snack (tho' this one is harder to remember as napping sometimes interferes) and his twice daily steam inhalations. Besides all this Richard has also resumed driving and took himself to the Loxwood Surgery to see his GP so he coould listen to his chest. He's quite good at picking people up at the train station, as well!
His weight has stayed about the same after he lost that five pounds a couple of weeks ago. To me he appears to be eating quite well. He has diarreah about every other day but we put that down to the antibiotics.
We saw Dr Kon, his chest doctor, at St. Mary's a week ago and after taking an xray and letting us examine it with him he concluded that it would be best to continue the antibiotics for another two week course as, though improved, there is still a bit of infection in the lungs... mostly in the right one which had been collapsed for the op. So, I guess, technically Richard still has pneumonia. Dr. Kon also gave Richard a perscription for something that is supposed to help expectorate the mucus sitting in the lungs. So far it is not hugely apparent that it is having any effect. Richard is still coughing what seems to me less, though Richard declares is still the same. I do know that it now only takes him about 15-30 minutes of coughing to settle at night and then he is quiet and peaceful until about 7:30am.
This past Wednesday we went in to see Prof Hanna on Harley Street. Richard was feeling particularly exhausted (I think from the swimming) so just decided to lay down on the floor in front of the receptionists desk using my backpack as a pillow. Richard is still a wonderful eccentric. I had to just smile and nod my head at the smart ladies and gentlement who arrived and found a body in the fetal position laying at their feet!
Inside the treatment room Prof Hanna asked how everything was going and stitched back the three places on the jejostomy tube that keep it attached to Richard's skin so it won't come out. The previous week Richard was doing a flush in a rather relaxed position and not having much success getting the plunger down. I noticed that the tube was coming out (about 1 1/2") of his belly. That's when I screamed at him to get up! I thought that it was just a short length inside and was ready to pop out but have since found out that its about 12" of tube inside him, so no wories.
Prof Hanna thinks Richard is doing really well and again said he was not suprised that Richard developed pneumonia after the op but they had to do it when they did.
Yesterday we saw Prof David Cunningham, Richard's excellent oncologist at the Royal Marsden. He reviewed a CT scan Richard had done on Wednesday before seeing Prof Hanna. It showed two little patches of infection in both lungs but everything else seemd good. The chemo is now set to begin March 22nd if Richard's chest has suitably improved.
I think the continued chest problems which manifest as a cough and a slightly painful tightness are getting Richard down psychologically. That's also coupled with knowing he has to get through the 63 days of chemo which Prof Cunningham has warned might not be tolerated quite as easily as the first rounds. There is also the risk that Richard will become neutropenic (no immune system) and pick up pneumonia again during the chemo. So, for the past few days he's felt pretty down and today disolved into tears muttering that he didn't think he could make it. I, of course, try to rationalise with him....that he IS doing better; there IS progress with the chest infection; his cough IS a lot less. But I realise what I realy need to do is just listen and acknowledge his suffering and fear.
We talk about going away to the sun for a few days but the prospect of getting on an airplane which at the best of times usually ends up giving Richard some illness, makes us reconsider. There has been some idle talk about renting a private jet! Who knows. I think I'll just have faith and hope that a benign power will work this one out for us.
Thursday, 10 March 2011
Coming Soon!
...new post on Saturday to include..." I screamed, 'Stand up quickly Richard, your feeding tube is coming out!' " and " he said he'd done 30 laps and 8 press ups..." and "I'll drive myself to the surgery!"
All this and more in Satruday's (12 March 2011) post!
All this and more in Satruday's (12 March 2011) post!
Saturday, 26 February 2011
Good Days, Bad Days
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!
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, 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.
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