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!
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