Monday 18th to Sunday 23rd March 2008
I am up to London for a day’s work. I have a meeting two floors up from my office and another in the afternoon at Scotland Yard, which gets me out again. With plenty of background reading to do at home, Easter and our week in La Gomera to come, I shall not be back in the office for two weeks. In the evening we go to Worthing and meet up with Matthew and co. to see Joseph and His Amazing Technicolour Dreamcoat. It is Ella’s birthday and this is her special birthday treat. It was great, but bless her, she fell asleep half way through the second half of the show!
On Tuesday I have the Citroen serviced, do some paperwork and then go to Brighton for my Pentamidine nebuliser. As usual the taste is bitter and I cough up loads of stuff on the way home – and yet more productively with my physio once I am home. I work all day Wednesday background reading for my project, while Tina has a day out in Tunbridge Wells with cousin Jane. I get a call to tell me that my Dermatologist’s appointment is on 11th April. That is quick. I am still to hear from the ENT people about an appointment for my sinus problem! Incidentally, my sinuses seemed to have unblocked some days back and I stopped using the nose drops. However, a few days later, back it came and so I am back on the nose drops again. It seems to have regressed quite a lot – which is slightly uncomfortable and very annoying.
Thursday morning is my Brighton clinic and I see Tim Corbett. My weight is 75 kgs – no change in two weeks. It takes three attempts to get blood from me today! My blood results are good – Wbc: 3.1; Neuts: 1.6; Lymph: 1.1; Hbn: 12.9; Plt: 77. My neutrophils have stayed constant remarkably for the past four weeks without any GCSF injections being necessary - all very good news. Tim comments on my sinusitis persisting, because my immune system recovery is slow. The more detailed breakdown of my white cells indicates this and shows that and I need to remain on Ciprofloxacin (or similar), Voraconozole and monthly Pentamidine and Vigam for the time being. Tim says it could be a year before I can come off these. He has yet to get a full response from Mark Jackson on my changing over to Colomycin, which needs a nebuliser being supplied as well. I hope to hear more on that later. Apart from the usual rattles in my chest, there are no problems with my physical examination. Tim agrees that a dermatologist should look at the place on my head, albeit it is has reduced in size and appearance. He will send me a copy of his GP letter so that I have it with me when we go to La Gomera, should I need it for any adverse reason. I will take my supply of Amoxycillin with me anyway, just in case I pick up a cold. I am to see him again in three weeks.
We have Easter weekend away at Linda’s in Leicestershire and we leave after breakfast on Good Friday morning and have a really enjoyable time. On Saturday Tina, Linda and Anita go shopping to Nottingham, while Bob, Paul, Tom and I go to the pub. I later find out that three pints of Pedigree at lunchtime is just a little too much for me in my slightly dodgy state of health. I am a little subdued for the rest of the day! We wake on Easter Sunday to a carpeting of snow, but it is gone by late morning. We have a good circular walk along the towpath to Shackerstone and back – about two and a half miles - with a stop for refreshment in the village. This is followed by plenty of lung evacuation physio! My sinuses are still playing up. We drive home on Monday morning and the day turns into a clear bright afternoon but still with a wintry feel about it. Can’t wait to fly off on Wednesday for a week of sun, rest and recuperation.
Monday, 24 March 2008
Thursday, 20 March 2008
Back to Work – Week Two
Monday 10th to Sunday 16th March 2008
I spend Monday at home doing odds and ends. I do a couple of hours work reading documents relating to my project. I am already feeling rather full stomached - or is that my stomach is shrinking again? - after only two days without Omeprazole, so I resume my tablet in the evening. It was worth trying, if only to see that I still need it!
I am up to the office on Tuesday. Martin has generously increased my daily fee and has had a contract drawn up. I get hold of some more background information for my project and go over to the offices on the Embankment to sign my contract. So here is a little more exercise for me, but I am tired in the evening. I am at home again on Wednesday. I do some sorting out reference my resuming self employment, including talking to Graham Hole over my likely tax and national insurance needs – very timely as it is budget day! I have two very productive lung physio sessions. I guess there is no end to this!
I work from home on Thursday but go to the doctor as I have a troublesome place on my head which has been there for about two years. It started off as dry skin, but has gone on to be irritating and occasionally sore and scabby. It has become a larger scabby place in the last few days and I didn’t want to wait another week until I say Tim Corbett. I am reassured that it is non-problematic sun damage. I get a referral to a dermatologist at Brighton and some anti-biotic Bactroban ointment to ensure any potential infection is dealt with.
I go to the office on Friday. I have a big coughing-up session about 11.30am, but I am able to find somewhere quiet for it, fortunately. Otherwise it is an uneventful day and evening, although I have to do my physio when I get home. I am very pleased with my first two week’s back at work and I think that I can manage whatever comes as long as I know my limitations.
Saturday is a relaxing day in preparation for Ella’s 7th birthday fancy dress party this evening down at Worthing. We go as cowboy and cowgirl - complete with hats! It is the usual children’s birthday chaos with Charrise doing a great job keeping everyone entertained and in order. Matthew and co. come to us for Sunday lunch and afters. It is a lousy day, so we don’t venture out. I do an hour of physio in the late afternoon. It is quite difficult and I am also tired. I fall asleep twice, hence half and hour becomes one hour! The nasty place on my head seems to be easing with the regular use of the ointment.
I spend Monday at home doing odds and ends. I do a couple of hours work reading documents relating to my project. I am already feeling rather full stomached - or is that my stomach is shrinking again? - after only two days without Omeprazole, so I resume my tablet in the evening. It was worth trying, if only to see that I still need it!
I am up to the office on Tuesday. Martin has generously increased my daily fee and has had a contract drawn up. I get hold of some more background information for my project and go over to the offices on the Embankment to sign my contract. So here is a little more exercise for me, but I am tired in the evening. I am at home again on Wednesday. I do some sorting out reference my resuming self employment, including talking to Graham Hole over my likely tax and national insurance needs – very timely as it is budget day! I have two very productive lung physio sessions. I guess there is no end to this!
I work from home on Thursday but go to the doctor as I have a troublesome place on my head which has been there for about two years. It started off as dry skin, but has gone on to be irritating and occasionally sore and scabby. It has become a larger scabby place in the last few days and I didn’t want to wait another week until I say Tim Corbett. I am reassured that it is non-problematic sun damage. I get a referral to a dermatologist at Brighton and some anti-biotic Bactroban ointment to ensure any potential infection is dealt with.
I go to the office on Friday. I have a big coughing-up session about 11.30am, but I am able to find somewhere quiet for it, fortunately. Otherwise it is an uneventful day and evening, although I have to do my physio when I get home. I am very pleased with my first two week’s back at work and I think that I can manage whatever comes as long as I know my limitations.
Saturday is a relaxing day in preparation for Ella’s 7th birthday fancy dress party this evening down at Worthing. We go as cowboy and cowgirl - complete with hats! It is the usual children’s birthday chaos with Charrise doing a great job keeping everyone entertained and in order. Matthew and co. come to us for Sunday lunch and afters. It is a lousy day, so we don’t venture out. I do an hour of physio in the late afternoon. It is quite difficult and I am also tired. I fall asleep twice, hence half and hour becomes one hour! The nasty place on my head seems to be easing with the regular use of the ointment.
Wednesday, 12 March 2008
I Get Back to Work after 14 Months
Monday 3rd to Sunday 9th March 2008
After living with my sinusitis for over four weeks, at last I have a CT scan on my sinuses on Monday afternoon. I am told that a scan result will be with my consultant for my Thursday clinic. I do a bit more clearing of the garage.
I go up to Earls Court on Tuesday for my first working day for 14 months and to discuss a contract and what Martin and Steve want me to do. I take the 8.26am train, getting to the office at 9.45am. Just right for me, except that I have to catch the school bus from here! I have an hour or so in the office chatting with the old team before Martin and Steve arrive. All seven of that main team are in and make me very welcome. I am made even more welcome by Steve and Martin. It is great to be back, but even nicer is the warmth of that welcome from the top duo. Almost brought a tear to the eye! Martin has an interesting project for me looking into consultation arrangements across London. I don’t have the complete specification today but it looks like six months’ work to me. My plan is to take early opportunities to get out and about and see how I cope with walking the streets of London, climbing up and down tube station stairs and generally exercising myself as I predict quite a bit of my future working life this year will be. I am free for the afternoon, so I test out my stamina straight away, by travelling across to Holborn to meet up with an old analyst contact from my 2006 project. It is a very worthwhile visit in all respects. I walk a total of about two miles, some of it unnecessary as I go to the wrong station for my train home. It is quite exerting and I cough up a load of gunge sitting on the platform at St Pancras, but I consider that I passed the test. I catch a bus home from the station and get home at 7pm. Quite a day!
On Wednesday I finish sorting out the garage contents and take a load of rubbish to the tip. I leave a message on Pete Korell’s blog, including asking him to email me if he has time.
I have a morning clinic at Brighton on Thursday and see Sangeeta. My CT scan shows that the right drainage hole is still blocked, but I have to say that it is feeling slightly better. Carry on with the nasal drops. She tells me that I have an appointment with the ENT team in the pipeline for sometime soon. My blood results today are - Wbc: 3.3; Neuts: 1.7; Lymph: 1.2; Hbn: 13.3; Plt: 96. I do not need a GCSF injection and can wait for the next clinic in two weeks to see how the neutrophils progress. I am to continue with the Pentamidine nebuliser, which I am scheduled to have in two weeks time. I then go to Staplefield for lunch with another former work colleague Dave Scales. We go back to 1976 in the Burgess Hill CID, when he was my boss, but we haven’t seen each other since May 1997. It’s really great to meet again and we do an immense amount of catching up.
I have another day in London on Friday, getting up early to catch the 7.19 train. The team has organised a national conference of Neighbourhood Policing and I have a sitting and listening day. It is very relaxing and I make a couple of useful contacts for my impending project! I even have a chat with Tim Godwin who comes in the do the closing speech - yet another blinder of course! He is delighted that I am back. We babysit for Matthew and Charrise in the evening, including my driving them to and from their friends. Today is another test for me, as not only do I have a day in London, but I drive a total of 76 miles, half of which is after midnight and an hour or so dozing on the settee!
We have Tony and Pam visit us for the weekend. We meet up at the Royal Oak for lunch on Saturday and have a leisurely rest of the day with plenty of chatting. We have an energetic walk on Sunday morning up at Wakehurst Place. It isn’t that we walk very far, but the first half is mainly downhill and so the second half is mostly uphill - and very steep at that! Another test for my dodgy lungs! My stomach has seemed to be well back to normal for the past two months, so I decide to stop taking my daily Omeprazole tablet ands see what happens. For the first time in my living memory there is only one club from the top flight - Portsmouth - in the semi-finals of the FA Cup. The others are West Bromwich, Cardiff and Barnsley - who beat Liverpool and Chelsea in their last two ties.
After living with my sinusitis for over four weeks, at last I have a CT scan on my sinuses on Monday afternoon. I am told that a scan result will be with my consultant for my Thursday clinic. I do a bit more clearing of the garage.
I go up to Earls Court on Tuesday for my first working day for 14 months and to discuss a contract and what Martin and Steve want me to do. I take the 8.26am train, getting to the office at 9.45am. Just right for me, except that I have to catch the school bus from here! I have an hour or so in the office chatting with the old team before Martin and Steve arrive. All seven of that main team are in and make me very welcome. I am made even more welcome by Steve and Martin. It is great to be back, but even nicer is the warmth of that welcome from the top duo. Almost brought a tear to the eye! Martin has an interesting project for me looking into consultation arrangements across London. I don’t have the complete specification today but it looks like six months’ work to me. My plan is to take early opportunities to get out and about and see how I cope with walking the streets of London, climbing up and down tube station stairs and generally exercising myself as I predict quite a bit of my future working life this year will be. I am free for the afternoon, so I test out my stamina straight away, by travelling across to Holborn to meet up with an old analyst contact from my 2006 project. It is a very worthwhile visit in all respects. I walk a total of about two miles, some of it unnecessary as I go to the wrong station for my train home. It is quite exerting and I cough up a load of gunge sitting on the platform at St Pancras, but I consider that I passed the test. I catch a bus home from the station and get home at 7pm. Quite a day!
On Wednesday I finish sorting out the garage contents and take a load of rubbish to the tip. I leave a message on Pete Korell’s blog, including asking him to email me if he has time.
I have a morning clinic at Brighton on Thursday and see Sangeeta. My CT scan shows that the right drainage hole is still blocked, but I have to say that it is feeling slightly better. Carry on with the nasal drops. She tells me that I have an appointment with the ENT team in the pipeline for sometime soon. My blood results today are - Wbc: 3.3; Neuts: 1.7; Lymph: 1.2; Hbn: 13.3; Plt: 96. I do not need a GCSF injection and can wait for the next clinic in two weeks to see how the neutrophils progress. I am to continue with the Pentamidine nebuliser, which I am scheduled to have in two weeks time. I then go to Staplefield for lunch with another former work colleague Dave Scales. We go back to 1976 in the Burgess Hill CID, when he was my boss, but we haven’t seen each other since May 1997. It’s really great to meet again and we do an immense amount of catching up.
I have another day in London on Friday, getting up early to catch the 7.19 train. The team has organised a national conference of Neighbourhood Policing and I have a sitting and listening day. It is very relaxing and I make a couple of useful contacts for my impending project! I even have a chat with Tim Godwin who comes in the do the closing speech - yet another blinder of course! He is delighted that I am back. We babysit for Matthew and Charrise in the evening, including my driving them to and from their friends. Today is another test for me, as not only do I have a day in London, but I drive a total of 76 miles, half of which is after midnight and an hour or so dozing on the settee!
We have Tony and Pam visit us for the weekend. We meet up at the Royal Oak for lunch on Saturday and have a leisurely rest of the day with plenty of chatting. We have an energetic walk on Sunday morning up at Wakehurst Place. It isn’t that we walk very far, but the first half is mainly downhill and so the second half is mostly uphill - and very steep at that! Another test for my dodgy lungs! My stomach has seemed to be well back to normal for the past two months, so I decide to stop taking my daily Omeprazole tablet ands see what happens. For the first time in my living memory there is only one club from the top flight - Portsmouth - in the semi-finals of the FA Cup. The others are West Bromwich, Cardiff and Barnsley - who beat Liverpool and Chelsea in their last two ties.
Monday, 3 March 2008
A Week in the Garage and some Movement with the Sinusitis
Monday 25th February to Sunday 2nd March 2008
The initial plan to get up to London to discuss my return to work with Martin has to be put off for a week, so the main theme this week is clearing out the garage! It has been used as a store for convenience and a most annoying collection of rubbishy items for well over a year. Time for a “Spring” clean. Of course I have to be careful about damaging or cutting my hands and overdoing things with my energy levels still below par. But I bang my head on the garage door instead and need a plaster on it for the rest of the week! Anyway I do a steady two hours on Monday, Tuesday and Thursday mornings, after a short walk out and my lung clearing physio. On Tuesday evening I get a call from Tim Godwin. He says he wants me back at work on Monday! Ha, ha - just a small matter of a contract is needed, but a great motivation nonetheless. I get another nice message on my blog from Pete Korell in Wisconsin. He is about to see a consultant in Wilwaukee on the prospect of a transplant, but first had to negotiate permission with his insurance company. Not the best thing to have to do when you are ill as well! We don’t realise how lucky we are in the UK until we hear these stories. Anyway Pete, hope you get all the right answers and you are able to go through to your transplant.
Tina and I do two fast trips to the local tip on Wednesday morning with all the stuff I have rooted out of the garage. Then I see Richard Cook, my GP, about my sinusitis. This has been with me for very nearly four weeks and I am getting fed up with it! The nose spray we bought from the chemist has not made any effect. He prescribes me some Mometasone, a steroid based spray and some more antibiotics, this time Doxycycline for seven days. We go to cinema for the first time for about 18 months, if not longer, to see Oscar winning Daniel Day-Lewis in “There will be Blood” - superb. Whilst garage clearing on Thursday morning and doing some essential nose blowing, my left ear pops for the first time since in these past four weeks. At last! In fact it happens three times. Just goes to show what the proper medication can do in just two days!
On Friday I have my Day Unit appointment for my monthly Vigam immunoglobulin infusion plus a blood test. It is another four hour session. My blood results today are - Wbc: 3.9; Neut: 2.5; Lymph: 0.9; Hbn: 12.5; Plt: 104; and CRP: 16 - so I don’t have to take home any GCSF, but the CRP shows that I still have infection in me. My weight today is 74.7kgs - up slightly from last Friday. It is worth recording that my current daily medications are anti-viral, anti-fungal and anti-biotic, namely Aciclovir 200mg 3 times daily, Voriconozole 200mg twice daily and Ciprofloxacin 500mg twice daily. Additionally I have Omeprazole 20mg once daily and a garlic pearl twice daily for my stomach. Then it is Vigam and Pentamidine once monthly.
We have dinner at Val and Michel’s on Friday evening, meet up with Lu and Roger for lunch at the Royal Oak on Saturday and a fillet steak dinner at home that evening. Sunday being Mothers’ Day, we go down to Matthew’s for lunch of a superb Jamie Oliver Italian leg of lamb - absolutely delicious! Matthew and I take Ella and Mia on their bicycles to the local park on a fairly chilly afternoon. It certainly blows the cobwebs out of my lungs! Needless to say I get home for a big lung evacuation session. I am certainly getting plenty out from in there lately. Better out than in as they say. My sinusitis is still very much with me, well over four weeks since it started, but I am feeling a few movements from the congestion up there, so the medicine must be working.
The initial plan to get up to London to discuss my return to work with Martin has to be put off for a week, so the main theme this week is clearing out the garage! It has been used as a store for convenience and a most annoying collection of rubbishy items for well over a year. Time for a “Spring” clean. Of course I have to be careful about damaging or cutting my hands and overdoing things with my energy levels still below par. But I bang my head on the garage door instead and need a plaster on it for the rest of the week! Anyway I do a steady two hours on Monday, Tuesday and Thursday mornings, after a short walk out and my lung clearing physio. On Tuesday evening I get a call from Tim Godwin. He says he wants me back at work on Monday! Ha, ha - just a small matter of a contract is needed, but a great motivation nonetheless. I get another nice message on my blog from Pete Korell in Wisconsin. He is about to see a consultant in Wilwaukee on the prospect of a transplant, but first had to negotiate permission with his insurance company. Not the best thing to have to do when you are ill as well! We don’t realise how lucky we are in the UK until we hear these stories. Anyway Pete, hope you get all the right answers and you are able to go through to your transplant.
Tina and I do two fast trips to the local tip on Wednesday morning with all the stuff I have rooted out of the garage. Then I see Richard Cook, my GP, about my sinusitis. This has been with me for very nearly four weeks and I am getting fed up with it! The nose spray we bought from the chemist has not made any effect. He prescribes me some Mometasone, a steroid based spray and some more antibiotics, this time Doxycycline for seven days. We go to cinema for the first time for about 18 months, if not longer, to see Oscar winning Daniel Day-Lewis in “There will be Blood” - superb. Whilst garage clearing on Thursday morning and doing some essential nose blowing, my left ear pops for the first time since in these past four weeks. At last! In fact it happens three times. Just goes to show what the proper medication can do in just two days!
On Friday I have my Day Unit appointment for my monthly Vigam immunoglobulin infusion plus a blood test. It is another four hour session. My blood results today are - Wbc: 3.9; Neut: 2.5; Lymph: 0.9; Hbn: 12.5; Plt: 104; and CRP: 16 - so I don’t have to take home any GCSF, but the CRP shows that I still have infection in me. My weight today is 74.7kgs - up slightly from last Friday. It is worth recording that my current daily medications are anti-viral, anti-fungal and anti-biotic, namely Aciclovir 200mg 3 times daily, Voriconozole 200mg twice daily and Ciprofloxacin 500mg twice daily. Additionally I have Omeprazole 20mg once daily and a garlic pearl twice daily for my stomach. Then it is Vigam and Pentamidine once monthly.
We have dinner at Val and Michel’s on Friday evening, meet up with Lu and Roger for lunch at the Royal Oak on Saturday and a fillet steak dinner at home that evening. Sunday being Mothers’ Day, we go down to Matthew’s for lunch of a superb Jamie Oliver Italian leg of lamb - absolutely delicious! Matthew and I take Ella and Mia on their bicycles to the local park on a fairly chilly afternoon. It certainly blows the cobwebs out of my lungs! Needless to say I get home for a big lung evacuation session. I am certainly getting plenty out from in there lately. Better out than in as they say. My sinusitis is still very much with me, well over four weeks since it started, but I am feeling a few movements from the congestion up there, so the medicine must be working.
Tuesday, 26 February 2008
Good News - I Can Go Back to Work
Friday 22nd February 2008
We are away at 9am on Friday for my appointment with Steve Devereux at Kings. It is school half term this week and we get to our parking place in 65 minutes - a record! We bump into Ron and Linda Chamberlain in the coffee shop area. By coincidence Linda has an appointment this morning as well. Ron says Cobham is still not the same since Eve died. We meet Steve Devereux’s secretary, Judith, as arranged over the telephone. I wanted to meet face to face with her as she has always been really helpful over the phone. She is delightful. We also have a chat with Andre Jansen, the transplant co-ordinator. He is sorry that my transplant cannot go ahead but he offers us to call him anytime we need someone to talk to. Isn’t that great. We see Steve Devereux, who is pleased with how things are going for me, putting aside the loss of the transplant. He explains that I will not be eligible for the Revlimid clinical trial as it will not focus on patients who have already been treated with CamPred. However he is hoping that he will be able to negotiate an arrangement with a drug company. He is of the opinion that Revlimid is appropriate for me as a maintenance treatment with the expectation that it would be able to extend the remission period I get from Campath. He would not wish to have to use it is a further treatment once my condition has regressed - whenever that might be. Revlimid is not immune suppressive, on the contrary, if anything, it does the reverse. It comes in tablet form and would not interfere with my normal daily / weekly regime. He feels that time is not particularly pressing and hopes to update me next time we meet. We discuss Mark Jackson’s report and I say how helpful it was for me, enabling me to put a proper perspective on the state of my lungs. Can I go back to work? Yes! I tell him that Omeprazole was a three day miracle cure for my eating disorder, giving me a very enjoyable Christmas lunch. On the state of the congestion in my head, he tells me that I have sinusitis and explains how that has come about. I need nasal drops to help clear the sinus drain holes. However he forgets to give me a prescription! So we buy a nasal spray at the village chemist - hopefully it will be good enough. My weight today is 74.5 kgs, which is up by over a kilo from three weeks ago. I am to see Steve Devereux again in two months.
We are away at 9am on Friday for my appointment with Steve Devereux at Kings. It is school half term this week and we get to our parking place in 65 minutes - a record! We bump into Ron and Linda Chamberlain in the coffee shop area. By coincidence Linda has an appointment this morning as well. Ron says Cobham is still not the same since Eve died. We meet Steve Devereux’s secretary, Judith, as arranged over the telephone. I wanted to meet face to face with her as she has always been really helpful over the phone. She is delightful. We also have a chat with Andre Jansen, the transplant co-ordinator. He is sorry that my transplant cannot go ahead but he offers us to call him anytime we need someone to talk to. Isn’t that great. We see Steve Devereux, who is pleased with how things are going for me, putting aside the loss of the transplant. He explains that I will not be eligible for the Revlimid clinical trial as it will not focus on patients who have already been treated with CamPred. However he is hoping that he will be able to negotiate an arrangement with a drug company. He is of the opinion that Revlimid is appropriate for me as a maintenance treatment with the expectation that it would be able to extend the remission period I get from Campath. He would not wish to have to use it is a further treatment once my condition has regressed - whenever that might be. Revlimid is not immune suppressive, on the contrary, if anything, it does the reverse. It comes in tablet form and would not interfere with my normal daily / weekly regime. He feels that time is not particularly pressing and hopes to update me next time we meet. We discuss Mark Jackson’s report and I say how helpful it was for me, enabling me to put a proper perspective on the state of my lungs. Can I go back to work? Yes! I tell him that Omeprazole was a three day miracle cure for my eating disorder, giving me a very enjoyable Christmas lunch. On the state of the congestion in my head, he tells me that I have sinusitis and explains how that has come about. I need nasal drops to help clear the sinus drain holes. However he forgets to give me a prescription! So we buy a nasal spray at the village chemist - hopefully it will be good enough. My weight today is 74.5 kgs, which is up by over a kilo from three weeks ago. I am to see Steve Devereux again in two months.
I Definitely Feel On The Up
Monday 18th to Sunday 24th February 2008
I get my copy of Mark Jackson’s letter following the consultation with him last Tuesday in his chest clinic. It underlines all the points he made to me. I then get in touch with Steve Devereux’s secretary, Judith, at Kings and she gives me an appointment with him for Friday morning - which is great. I want to see if he will give me clearance to go back to work as well and this will enable me to move quickly if he says yes - which I am hopeful he will. We have been thinking we deserve another trip to La Gomera, what with everything we have been going through. I fix a week from the Wednesday immediately following Easter.
On Tuesday I meet up with old colleague Chris Pascoe for lunch in Lewes. We chat over latest happenings for both of us. I then have my Pentamidine nebuliser in the Elton John Unit, at Brighton courtesy of Abbie. What with my nasal / sinus trouble, I am quite woozy afterwards and have a sit down for a while before leaving. I am already coughing up loads of stuff on the drive home and when I get home my lung evacuation is 250% more than usual. This is the power of the nebuliser, even though it is not its intended outcome! I feel a bit unwell for the rest of the day. I am sure Pentamidine is good for me, but it sure doesn’t make me feel good!
Next day Tina and I do a two mile fast walk to get the blood circulating and I feel good afterwards. I receive a Google Alert from the MedicalNewsToday website about Campath and its potential usage for earlier CLL intervention where fludarabine is not appropriate. A clinical trial compared Campath with Chlorabucil in previously untreated patients with B-cell CLL. What draws my attention, however, is the higher overall response rates and the mention of a median “remission” period of two years. Interesting.
I am back to the RSCH on Thursday morning for a clinic with Tim Corbett. My blood results are good - Wbc: 3.7; Neuts: 1.9; Lymph: 1.2; Hbn: 13.4; PLT: 108. He decides that I should wait until next week’s blood test before having a next GCSF injection. He wants to get back to Mark Jackson about his recommended substitution of Colomycin for Ciprofloxacin. So I am to stay on Ciprofloxacin and Voriconozole for another month. He also wants to have a more detailed analysis of my blood results to see whether I need to continue on Pentamidine and Vigam, but to have the Vigam due for me next week anyway. He checks out my sinus / ear congestion and wants me to have a CT scan on my sinuses. Although I am having no pain from my sinuses, I still have ringing and some discomfort in my left ear and very reduced hearing from it. The right side is considerably better. It is a real bind and wish it could be sorted out. Tim agrees with Mark Jackson that it would be good for me to get back to work as long as I am aware of the potential for infections.
We have a quiet Saturday. Anna, Nick and Eva are with us until tomorrow morning, when they leave for France and Spain. I have another two mile walk in the morning, which makes me feel good. The evening is electrified by England beating France at the Stade de France - a repeat of the World Cup semi-final. We have Sunday lunch at Matthew’s. I feel rather tired through the afternoon, so we come home and I have a couple of hours’ sleep. This is my first afternoon snooze for nearly two weeks. However after my lung evacuation physio on a couple of afternoons this week I have felt so knackered that I have laid on the bed to relax afterwards and dozed off for 15 minutes or so. Under the circumstances I think that is forgivable.
I get my copy of Mark Jackson’s letter following the consultation with him last Tuesday in his chest clinic. It underlines all the points he made to me. I then get in touch with Steve Devereux’s secretary, Judith, at Kings and she gives me an appointment with him for Friday morning - which is great. I want to see if he will give me clearance to go back to work as well and this will enable me to move quickly if he says yes - which I am hopeful he will. We have been thinking we deserve another trip to La Gomera, what with everything we have been going through. I fix a week from the Wednesday immediately following Easter.
On Tuesday I meet up with old colleague Chris Pascoe for lunch in Lewes. We chat over latest happenings for both of us. I then have my Pentamidine nebuliser in the Elton John Unit, at Brighton courtesy of Abbie. What with my nasal / sinus trouble, I am quite woozy afterwards and have a sit down for a while before leaving. I am already coughing up loads of stuff on the drive home and when I get home my lung evacuation is 250% more than usual. This is the power of the nebuliser, even though it is not its intended outcome! I feel a bit unwell for the rest of the day. I am sure Pentamidine is good for me, but it sure doesn’t make me feel good!
Next day Tina and I do a two mile fast walk to get the blood circulating and I feel good afterwards. I receive a Google Alert from the MedicalNewsToday website about Campath and its potential usage for earlier CLL intervention where fludarabine is not appropriate. A clinical trial compared Campath with Chlorabucil in previously untreated patients with B-cell CLL. What draws my attention, however, is the higher overall response rates and the mention of a median “remission” period of two years. Interesting.
I am back to the RSCH on Thursday morning for a clinic with Tim Corbett. My blood results are good - Wbc: 3.7; Neuts: 1.9; Lymph: 1.2; Hbn: 13.4; PLT: 108. He decides that I should wait until next week’s blood test before having a next GCSF injection. He wants to get back to Mark Jackson about his recommended substitution of Colomycin for Ciprofloxacin. So I am to stay on Ciprofloxacin and Voriconozole for another month. He also wants to have a more detailed analysis of my blood results to see whether I need to continue on Pentamidine and Vigam, but to have the Vigam due for me next week anyway. He checks out my sinus / ear congestion and wants me to have a CT scan on my sinuses. Although I am having no pain from my sinuses, I still have ringing and some discomfort in my left ear and very reduced hearing from it. The right side is considerably better. It is a real bind and wish it could be sorted out. Tim agrees with Mark Jackson that it would be good for me to get back to work as long as I am aware of the potential for infections.
We have a quiet Saturday. Anna, Nick and Eva are with us until tomorrow morning, when they leave for France and Spain. I have another two mile walk in the morning, which makes me feel good. The evening is electrified by England beating France at the Stade de France - a repeat of the World Cup semi-final. We have Sunday lunch at Matthew’s. I feel rather tired through the afternoon, so we come home and I have a couple of hours’ sleep. This is my first afternoon snooze for nearly two weeks. However after my lung evacuation physio on a couple of afternoons this week I have felt so knackered that I have laid on the bed to relax afterwards and dozed off for 15 minutes or so. Under the circumstances I think that is forgivable.
Monday, 18 February 2008
Never Underestimate the Power of Positive Thinking
Monday 11th to Sunday 17th February 2008
I have another quiet Monday with a surprise phone call from Cliff Holman. We go back over 40 years to initial police training and he had been in touch before Christmas when he had heard of my predicament of last year. It is really good to get calls like this. It does wonders for my morale. My friend Colin also rings me. He has been out of hospital a week now and is feeling a lot better, even managing a walk to the village yesterday - about a half mile each way. That is really good news.
Tuesday is a big day and I have given it a section of its own. We have lunch at Jeremy’s with Keith and Wendy on Wednesday - superb as ever. Keith has to start six weeks + daily radiotherapy treatment next week and they are moving house on the Wednesday as well. We hope all goes well. Yet more 40+ year old friends. Buoyed up by the good news from Dr Mark Jackson, I resolve to start getting myself a bit fitter, so I have my first leg stretching walk on
Thursday. I do just short of two miles on a bright, but cold, day, with a nasty east wind. I feel better for it, but wake up in the night with cramp in the lower shin and then in my feet. Aaaagh! Linda and Paul come down today for the weekend. I have decided to go up to the Princess Royal Hospital at Haywards Heath for the blood tests I have on the weeks I do not go to the clinic at Brighton. If I time it right the wait in the bloods room is so much shorter. So in the morning I have my check and call the Day Unit for the results later on. They are - Wbc: 4.2; Neut: 2.4; Lymph: 1.3; Hbn: 12.6; and PLT: 113. I am surprised that my neutrophils are as high as 2.4, since my last GCSF was seven days ago. I will hold on for my GCSF for a few days. This could be promising for the eventual return to some kind of “normality” in my immune system.
All four of us set off about 7.15am on Friday for a day trip to Calais. I have a neck and shoulder massage during the crossing! We eat well at Le Detroit as usual and then do a big shop at Sainsbury and Auchan. The day goes very well. We have a mooching around kind of Saturday with a pub lunch at the Royal Oak. I have also resolved to stop the afternoon sleep sessions I have been used to these past few months. If I am going back to work, it’s no good wanting to have a kip all afternoon! Thinking my breathlessness and tiredness was due to my Bronchiectasis and that it would be a feature of my life from here on, I had allowed myself to get into a bit of a rut. I have not had an afternoon sleep since Tuesday! It’s all mind over matter. Never underestimate the power of positive thinking! I should have remembered - after all it is my motto!
We have a quiet Sunday, including a brisk two mile walk and I give myself my GCSF injection. Anna, Nick and Eva arrive late evening from Mull. They are having a couple of weeks or so break driving down through France and into Spain. I still have my “head cold” or whatever it is, with my head full of catarrh, a buzzing in my ears and reduced hearing especially in the left ear. This has now been going on for over two weeks. I am in no discomfort except for the buzzing and the poor hearing. However I still have the sensitive skin issue that started back in October and I am still using Doublebase daily to ease the itchiness I feel on my head, neck, shoulders and waist areas. Needless to say I am still successfully evacuating lots of gunge from my lungs every day.
I have another quiet Monday with a surprise phone call from Cliff Holman. We go back over 40 years to initial police training and he had been in touch before Christmas when he had heard of my predicament of last year. It is really good to get calls like this. It does wonders for my morale. My friend Colin also rings me. He has been out of hospital a week now and is feeling a lot better, even managing a walk to the village yesterday - about a half mile each way. That is really good news.
Tuesday is a big day and I have given it a section of its own. We have lunch at Jeremy’s with Keith and Wendy on Wednesday - superb as ever. Keith has to start six weeks + daily radiotherapy treatment next week and they are moving house on the Wednesday as well. We hope all goes well. Yet more 40+ year old friends. Buoyed up by the good news from Dr Mark Jackson, I resolve to start getting myself a bit fitter, so I have my first leg stretching walk on
Thursday. I do just short of two miles on a bright, but cold, day, with a nasty east wind. I feel better for it, but wake up in the night with cramp in the lower shin and then in my feet. Aaaagh! Linda and Paul come down today for the weekend. I have decided to go up to the Princess Royal Hospital at Haywards Heath for the blood tests I have on the weeks I do not go to the clinic at Brighton. If I time it right the wait in the bloods room is so much shorter. So in the morning I have my check and call the Day Unit for the results later on. They are - Wbc: 4.2; Neut: 2.4; Lymph: 1.3; Hbn: 12.6; and PLT: 113. I am surprised that my neutrophils are as high as 2.4, since my last GCSF was seven days ago. I will hold on for my GCSF for a few days. This could be promising for the eventual return to some kind of “normality” in my immune system.
All four of us set off about 7.15am on Friday for a day trip to Calais. I have a neck and shoulder massage during the crossing! We eat well at Le Detroit as usual and then do a big shop at Sainsbury and Auchan. The day goes very well. We have a mooching around kind of Saturday with a pub lunch at the Royal Oak. I have also resolved to stop the afternoon sleep sessions I have been used to these past few months. If I am going back to work, it’s no good wanting to have a kip all afternoon! Thinking my breathlessness and tiredness was due to my Bronchiectasis and that it would be a feature of my life from here on, I had allowed myself to get into a bit of a rut. I have not had an afternoon sleep since Tuesday! It’s all mind over matter. Never underestimate the power of positive thinking! I should have remembered - after all it is my motto!
We have a quiet Sunday, including a brisk two mile walk and I give myself my GCSF injection. Anna, Nick and Eva arrive late evening from Mull. They are having a couple of weeks or so break driving down through France and into Spain. I still have my “head cold” or whatever it is, with my head full of catarrh, a buzzing in my ears and reduced hearing especially in the left ear. This has now been going on for over two weeks. I am in no discomfort except for the buzzing and the poor hearing. However I still have the sensitive skin issue that started back in October and I am still using Doublebase daily to ease the itchiness I feel on my head, neck, shoulders and waist areas. Needless to say I am still successfully evacuating lots of gunge from my lungs every day.
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