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.
Tuesday 26 February 2008
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.
Thursday 14 February 2008
A Big Day - an Appointment with the Chest Consultant
Tuesday 12th February 2008
Tina and I go down to Brighton General Hospital for a 4.10pm appointment with Dr Mark Jackson, the chest consultant. I had spoken with him briefly back in November when I had my bronchoscopy and liked him.. He turned out to be even better than that! We had not even 0.1% hope or expectation that he would disagree with Steve Devereux about the risks involved with going into a stem cell transplant. Therefore there was less likelihood of our being disappointed with what he had to tell us. In fact it turns out to be informative, helpful and positive in lots of ways. Firstly, his opinion is to strongly advise against the transplant as the risk would be too great, although not quantifiable in any percentage terms. His main concern, over and above the risk of Pseudomonas, is that I would get a recurrence of the fungal infection, Aspergillus, which could set up a fatal septicaemia. We discuss the history of my Bronchiectasis, with the thinking that it could have started as long as five years ago or so, when I had a persistent chesty cough some months before my initial CLL diagnosis. The Pseudomonas would definitely have come along much later, taking advantage of my low immune system and the condition of my lungs.
Not surprisingly, he finds a load of crackles in my chest. He also identifies that I have classic Brochiectasis finger nails - which is called “clubbing“. Apparently they run level with the backs of my fingers instead of there being a dip at the quick. I could not see what he means, but he makes a point of showing the feature to the three student doctors who are sitting-in on the consultation. He has of course courteously asked me if I minded them seeing me stripped to waist - they were all young ladies! I say that I am sure they had all seen a pigeon chest before!
He tells me that whilst my Bronchiectasis could get worse, the daily lung clearing physiotherapy and keeping a watchful eye for possible infection, are the right things to do to keep on top of it. The more I allow secretions to accumulate, the greater risk that they might become infectious. But I must live with the Bronchiectasis for the rest of my life and therefore live with the need for daily lung evacuation. He says it a good idea to have a few phials at home, should a sample be needed. He will also recommend to the Haemotology Team that I come off Ciprofloxacin and go on to Colomycin by nebuliser. The reason for this is that Ciprofloxacin is more appropriate as a treatment medication, with Colomycin as a prophylactic. Should I get an infection, it could then be treated with Ciprofloxacin, otherwise the only treatment available would be hospitalised intra-venous anti-biotics. Another piece of better news is that my latent Pseudomonas and Aspergillus are not infectious to other people, so I will now be able to take Communion wine. I ask him whether the Bronchiectasis is the cause of my daily tiredness or the breathlessness I experience when walking up hill. Not so! I have lost no lung capacity and my blood/oxygen levels are very good. My tiredness and breathlessness is more likely the result of my past year’s treatment, which will have taken an awful lot out of me.
The last piece of news is the icing on the cake, as I tentatively ask his opinion about my going back to some part-time work. I explain what this would entail and his response is that he thinks it would be very good for me, as it would help me build up my strength. Wow! That is so much better than I expected. I will of course check this out with Steve Devereux when I next see him at Kings, but it gives me such a lift. Tina and I leave really encouraged by everything he said. He will send me a copy of his letter to the Haemotology Team.
Tina and I go down to Brighton General Hospital for a 4.10pm appointment with Dr Mark Jackson, the chest consultant. I had spoken with him briefly back in November when I had my bronchoscopy and liked him.. He turned out to be even better than that! We had not even 0.1% hope or expectation that he would disagree with Steve Devereux about the risks involved with going into a stem cell transplant. Therefore there was less likelihood of our being disappointed with what he had to tell us. In fact it turns out to be informative, helpful and positive in lots of ways. Firstly, his opinion is to strongly advise against the transplant as the risk would be too great, although not quantifiable in any percentage terms. His main concern, over and above the risk of Pseudomonas, is that I would get a recurrence of the fungal infection, Aspergillus, which could set up a fatal septicaemia. We discuss the history of my Bronchiectasis, with the thinking that it could have started as long as five years ago or so, when I had a persistent chesty cough some months before my initial CLL diagnosis. The Pseudomonas would definitely have come along much later, taking advantage of my low immune system and the condition of my lungs.
Not surprisingly, he finds a load of crackles in my chest. He also identifies that I have classic Brochiectasis finger nails - which is called “clubbing“. Apparently they run level with the backs of my fingers instead of there being a dip at the quick. I could not see what he means, but he makes a point of showing the feature to the three student doctors who are sitting-in on the consultation. He has of course courteously asked me if I minded them seeing me stripped to waist - they were all young ladies! I say that I am sure they had all seen a pigeon chest before!
He tells me that whilst my Bronchiectasis could get worse, the daily lung clearing physiotherapy and keeping a watchful eye for possible infection, are the right things to do to keep on top of it. The more I allow secretions to accumulate, the greater risk that they might become infectious. But I must live with the Bronchiectasis for the rest of my life and therefore live with the need for daily lung evacuation. He says it a good idea to have a few phials at home, should a sample be needed. He will also recommend to the Haemotology Team that I come off Ciprofloxacin and go on to Colomycin by nebuliser. The reason for this is that Ciprofloxacin is more appropriate as a treatment medication, with Colomycin as a prophylactic. Should I get an infection, it could then be treated with Ciprofloxacin, otherwise the only treatment available would be hospitalised intra-venous anti-biotics. Another piece of better news is that my latent Pseudomonas and Aspergillus are not infectious to other people, so I will now be able to take Communion wine. I ask him whether the Bronchiectasis is the cause of my daily tiredness or the breathlessness I experience when walking up hill. Not so! I have lost no lung capacity and my blood/oxygen levels are very good. My tiredness and breathlessness is more likely the result of my past year’s treatment, which will have taken an awful lot out of me.
The last piece of news is the icing on the cake, as I tentatively ask his opinion about my going back to some part-time work. I explain what this would entail and his response is that he thinks it would be very good for me, as it would help me build up my strength. Wow! That is so much better than I expected. I will of course check this out with Steve Devereux when I next see him at Kings, but it gives me such a lift. Tina and I leave really encouraged by everything he said. He will send me a copy of his letter to the Haemotology Team.
Tuesday 12 February 2008
A Head Full of Stuff and a Week of Food
Monday 4th to Sunday 10th February 2008
During this week I have had a very interesting comment on my blog from Pete Korell of Wisconsin USA. Pete, firstly, I hope you had good news about your impending transplant. Yes, I would very much like to read your blog, so please can you post your details next time you view this. Do you have similar problems to me - a protein 53 defect with 17p and 11q deletions? I would also be interested to see if our age and health profiles are similar.
I have a quiet Monday at home, brightened by a call from Martin Stevens, asking how things are for me. He had been stunned to get the news of my transplant cancellation and again told me that as and when I was up to it, there was work for me to do with his team. Just what I wanted to hear! My head cold - or whatever it is - has continued right through the weekend. I have some suspiciously bright yellow catarrh coming from the nasal area, my head feels like it is full of cotton wool and I cannot hear very well. Apart from that I have no temperature and do not feel unwell, but I guess I have an infection there of some sort. I will see the team at Brighton tomorrow about it.
I go down to the RSCH on Tuesday for my Pentamidine nebuliser at 10am. I get a real soaking walking from the car to the Elton John Unit thanks to driving rain off the seafront. Then I am told that, due to sickness, the session has had to be cancelled. I go up to the Day Unit to have my head checked out. I have blood and nasal samples taken and am later seen by Sangeeta. I have an upper respiratory tract infection and am prescribed the anti-biotic Augmentin for seven days. As I am leaving the hospital I bump into an old work colleague, Brian Cartmell. We go right back to my first policing days in the late 60s! Unfortunately Vi has broken her wrist in a fall and is being treated here today.
We get a big surprise on Wednesday with a visit from John Mason, my best man from 40 years ago(!). We had lost touch over the past ten years or more, other than through Christmas cards, but Tina had put a note on our last card and John responded. We had lunch out courtesy of John. He has all but retired from his chiropody and lower limb surgery work after a 40 year career. It was really good to see him.
I am down to the RSCH again on Thursday for the morning outpatients clinic and am seen by Tim Corbett. My blood results today are - Wbc: 4.1; Neuts: 1.9; Lymph: 1.7; Hbn: 12.6; and PLT: 103. So I give myself a GCSF injection in the afternoon. As the fungal infection issue from last October / November has now settled, Tim is going to take me off Voraconozole and put me back on Itroconozole - as I now only need a prophylactic rather than a “treatment” medication. Deep joy - I don’t think! I am to have weekly blood tests and fortnightly outpatient clinic attendances from now on. We have supper and cards with Cath and Jim. Great fun!
This is turning out to be a week of much feeding - and the weather has changed to clear skies. Tina walks to work yet again on a bright sunny Friday morning. I am taken out for lunch by Simone and Ian, my old team from my last year at Lewes. It is really good to hear their latest news. In the evening we go down to Worthing for dinner out with Matthew and Charrise, to celebrate Charisse’s birthday of yesterday. A superb restaurant - called Food - and a very good meal. With two meals inside me today, I am fit to burst! It proves that I haven’t quite got all my appetite back yet!
I spend Saturday at home. It is a shame not be able to get out for a good walk in this lovely Spring-like weather, but I am still finding it quite hard just walking up the road to get my newspaper. I am still doing my lung clearing exercises once or twice daily and having an hour or more sleep most afternoons. We have Sarah and Paul over for dinner in the evening and I am not to bed until 1am - remarkable! We go to 10.30am Mass on Sunday and have Lynn Ross for lunch.
During this week I have had a very interesting comment on my blog from Pete Korell of Wisconsin USA. Pete, firstly, I hope you had good news about your impending transplant. Yes, I would very much like to read your blog, so please can you post your details next time you view this. Do you have similar problems to me - a protein 53 defect with 17p and 11q deletions? I would also be interested to see if our age and health profiles are similar.
I have a quiet Monday at home, brightened by a call from Martin Stevens, asking how things are for me. He had been stunned to get the news of my transplant cancellation and again told me that as and when I was up to it, there was work for me to do with his team. Just what I wanted to hear! My head cold - or whatever it is - has continued right through the weekend. I have some suspiciously bright yellow catarrh coming from the nasal area, my head feels like it is full of cotton wool and I cannot hear very well. Apart from that I have no temperature and do not feel unwell, but I guess I have an infection there of some sort. I will see the team at Brighton tomorrow about it.
I go down to the RSCH on Tuesday for my Pentamidine nebuliser at 10am. I get a real soaking walking from the car to the Elton John Unit thanks to driving rain off the seafront. Then I am told that, due to sickness, the session has had to be cancelled. I go up to the Day Unit to have my head checked out. I have blood and nasal samples taken and am later seen by Sangeeta. I have an upper respiratory tract infection and am prescribed the anti-biotic Augmentin for seven days. As I am leaving the hospital I bump into an old work colleague, Brian Cartmell. We go right back to my first policing days in the late 60s! Unfortunately Vi has broken her wrist in a fall and is being treated here today.
We get a big surprise on Wednesday with a visit from John Mason, my best man from 40 years ago(!). We had lost touch over the past ten years or more, other than through Christmas cards, but Tina had put a note on our last card and John responded. We had lunch out courtesy of John. He has all but retired from his chiropody and lower limb surgery work after a 40 year career. It was really good to see him.
I am down to the RSCH again on Thursday for the morning outpatients clinic and am seen by Tim Corbett. My blood results today are - Wbc: 4.1; Neuts: 1.9; Lymph: 1.7; Hbn: 12.6; and PLT: 103. So I give myself a GCSF injection in the afternoon. As the fungal infection issue from last October / November has now settled, Tim is going to take me off Voraconozole and put me back on Itroconozole - as I now only need a prophylactic rather than a “treatment” medication. Deep joy - I don’t think! I am to have weekly blood tests and fortnightly outpatient clinic attendances from now on. We have supper and cards with Cath and Jim. Great fun!
This is turning out to be a week of much feeding - and the weather has changed to clear skies. Tina walks to work yet again on a bright sunny Friday morning. I am taken out for lunch by Simone and Ian, my old team from my last year at Lewes. It is really good to hear their latest news. In the evening we go down to Worthing for dinner out with Matthew and Charrise, to celebrate Charisse’s birthday of yesterday. A superb restaurant - called Food - and a very good meal. With two meals inside me today, I am fit to burst! It proves that I haven’t quite got all my appetite back yet!
I spend Saturday at home. It is a shame not be able to get out for a good walk in this lovely Spring-like weather, but I am still finding it quite hard just walking up the road to get my newspaper. I am still doing my lung clearing exercises once or twice daily and having an hour or more sleep most afternoons. We have Sarah and Paul over for dinner in the evening and I am not to bed until 1am - remarkable! We go to 10.30am Mass on Sunday and have Lynn Ross for lunch.
Monday 4 February 2008
Another Quiet Week - I Get my Chest Consultant Appointment
Monday 28th January to Sunday 3rd February 2008
I take Pauline to see Colin Dunbar in hospital at the PRH. Poor Colin has been in for over two weeks and we only heard on Friday. I think he enjoyed the visit and gets out soon. I am down to Brighton again on Tuesday for a blood test, which shows that my counts are holding up well - Wbc: 5.3; Neuts: 3.5; Lymph 1.1; Hbn: 11.8; PLT: 118. So I hold back on the GCSF until my Friday blood test. I get my chest consultant appointment by letter today for two week’s time. This is good as I really want to know as soon as possible whether there is any - even forlorn - hope of the possibility of my lungs being up to the bone marrow transplant at any time in the future. Alternatively I want to know what I can do to make life at least reasonably bearable given the current state of my lungs. I even want to check out what chance I could get back to work on a two / three day per week basis, or if travelling to London is not a runner. I need to get a fresh sickness note from my GP. In the absence of Richard Cook, a colleague gives me one for three months. This makes sense as I am in the throes of being less CLL and more Bronchiectasis plus there is the possibility that I might be able to get back to work around April time.
Tina is off on Wednesday. We have a visit from Jane and Richard and we have lunch at the New Inn with them. I really enjoy my lamb - plus two pints of Harveys! I am definitely back on track with my taste buds and appetite. Incidentally I am having a can of Old Speckled Hen each evening, except when I have already had a midday beer. I am hoping this will help with my efforts to put on a bit more weight and supplement my fried breakfasts and porridge. I am sure it all helps. We have decided that we will go on the pilgrimage to Lourdes that is being organised jointly for later this year by our parish priest and the priest from the East Worthing parish - where Matthew lives.
On Friday I go down to the RSCH for a three hour session with Vigam - my monthly immunoglobulin infusion. My blood test results today are - Neuts: 2.2; Hbn: 12.5; PLT: 123; and I have a CRP reading of 23 - the first CRP reading for ages. I am not surprised as I have had quite a bit of catarrh in the head since yesterday. I will see how things go. Despite all my diligent eating and drinking my weight today is 73.2 kgs. This is a kilo less than when I came back from our week on La Gomera. My GCSF injection today is the first since last Friday. So it looks as though this is dropping back to being a weekly necessity, rather than every three or four days.
I have a survey and estimate for loft and cavity wall insulation from the company linked to the offer from our District Council. It is a good deal but there will be the additional expence of having our loft floor raised if we want to continue using it - which we do. Add to that the electric rewiring we need and we will be making some considerable investments into our home during the first half of this year. But we will be safer, warmer and saving energy bills in the long run. A few months after stopping work last January, I applied for Incapacity Benefit, having been advised by the Job Centre Plus contacts that I would qualify. Well I soon found out that I didn’t, although I was no longer required to pay the £9 or so monthly stamp with the Department of Work and Pensions covering this for me. I recently received a 20 page detailed questionnaire about my “Incapacity”. Not really wanting to fill it in, I spoke to a helpful person at the regional office, with the result that I am going to ignore it at least for the time being.
We have the weekend away at Pam and Tony’s in Thanet and as ever thoroughly enjoy ourselves. We get there about 4pm, have lots of chats, enjoy a few drinks and have a superb confit of duck - homemade by Tony. He is such a good cook. Tina goes to the Minster “Minster” on Sunday morning but finds there is no Mass and a quick visit to Minnis Bay is very cold and windy. We go to the Dove at Dargate for an excellent lunch and bid our farewells there, having talked about getting away for a few days in the May half term week to Honfleur. At the risk of repeating myself too many times, my week still features my daily or twice daily lung clearing physio, plus an hour or so sleep.
I take Pauline to see Colin Dunbar in hospital at the PRH. Poor Colin has been in for over two weeks and we only heard on Friday. I think he enjoyed the visit and gets out soon. I am down to Brighton again on Tuesday for a blood test, which shows that my counts are holding up well - Wbc: 5.3; Neuts: 3.5; Lymph 1.1; Hbn: 11.8; PLT: 118. So I hold back on the GCSF until my Friday blood test. I get my chest consultant appointment by letter today for two week’s time. This is good as I really want to know as soon as possible whether there is any - even forlorn - hope of the possibility of my lungs being up to the bone marrow transplant at any time in the future. Alternatively I want to know what I can do to make life at least reasonably bearable given the current state of my lungs. I even want to check out what chance I could get back to work on a two / three day per week basis, or if travelling to London is not a runner. I need to get a fresh sickness note from my GP. In the absence of Richard Cook, a colleague gives me one for three months. This makes sense as I am in the throes of being less CLL and more Bronchiectasis plus there is the possibility that I might be able to get back to work around April time.
Tina is off on Wednesday. We have a visit from Jane and Richard and we have lunch at the New Inn with them. I really enjoy my lamb - plus two pints of Harveys! I am definitely back on track with my taste buds and appetite. Incidentally I am having a can of Old Speckled Hen each evening, except when I have already had a midday beer. I am hoping this will help with my efforts to put on a bit more weight and supplement my fried breakfasts and porridge. I am sure it all helps. We have decided that we will go on the pilgrimage to Lourdes that is being organised jointly for later this year by our parish priest and the priest from the East Worthing parish - where Matthew lives.
On Friday I go down to the RSCH for a three hour session with Vigam - my monthly immunoglobulin infusion. My blood test results today are - Neuts: 2.2; Hbn: 12.5; PLT: 123; and I have a CRP reading of 23 - the first CRP reading for ages. I am not surprised as I have had quite a bit of catarrh in the head since yesterday. I will see how things go. Despite all my diligent eating and drinking my weight today is 73.2 kgs. This is a kilo less than when I came back from our week on La Gomera. My GCSF injection today is the first since last Friday. So it looks as though this is dropping back to being a weekly necessity, rather than every three or four days.
I have a survey and estimate for loft and cavity wall insulation from the company linked to the offer from our District Council. It is a good deal but there will be the additional expence of having our loft floor raised if we want to continue using it - which we do. Add to that the electric rewiring we need and we will be making some considerable investments into our home during the first half of this year. But we will be safer, warmer and saving energy bills in the long run. A few months after stopping work last January, I applied for Incapacity Benefit, having been advised by the Job Centre Plus contacts that I would qualify. Well I soon found out that I didn’t, although I was no longer required to pay the £9 or so monthly stamp with the Department of Work and Pensions covering this for me. I recently received a 20 page detailed questionnaire about my “Incapacity”. Not really wanting to fill it in, I spoke to a helpful person at the regional office, with the result that I am going to ignore it at least for the time being.
We have the weekend away at Pam and Tony’s in Thanet and as ever thoroughly enjoy ourselves. We get there about 4pm, have lots of chats, enjoy a few drinks and have a superb confit of duck - homemade by Tony. He is such a good cook. Tina goes to the Minster “Minster” on Sunday morning but finds there is no Mass and a quick visit to Minnis Bay is very cold and windy. We go to the Dove at Dargate for an excellent lunch and bid our farewells there, having talked about getting away for a few days in the May half term week to Honfleur. At the risk of repeating myself too many times, my week still features my daily or twice daily lung clearing physio, plus an hour or so sleep.
Saturday 2 February 2008
A Quiet Week - My Chest Stitches are Taken Out
Monday 21st to Sunday 27th January 2008
I have a Monday afternoon clinic appointment at the RSCH, mainly for a check on the Hickman line site, and am seen by Vicky Tindell. There are no problems with the repair to the site and the stitches are due out on Thursday. Surprisingly my neutrophils are high, at 8.6, with the other counts as - Wbc: 11.8; Hbn: 11.8; and PLT: 120. It is decided that I should now start coming to the Thursday morning outpatients clinic on a weekly basis starting 7th February.
We have lunch at the Royal Oak at Wineham on Wednesday to discover that the well over 50 year Peacock family tenancy has come to an end. Tim bowed out in late November and a young couple has taken over, but are changing nothing! We meet Tim as we are leaving and he greets us as long lost friends. Tina even gets a kiss! I cannot wait to tell Mike Pont down in deepest France.
I am back to the Day Unit on Thursday to have my stitches out. They come out with ease. I am left with a small stab wound type of scar. Tina likes to liken it to a duelling scar! There is also still an amount of bruising from the removal procedure, but otherwise everything there is ok. My neutrophils are back to normal this time. My blood counts are - Wbc: 4.5; Neuts: 2.9; Lymph: 1.1; Hbn: 11.8; and PLT: 118. I do a bit of shopping in town before my appointment - a camera case and two long-wanted books. I keep my walking to a minimum as I am still conscious of my coughing, or having something in my lungs that may want to get out (!). I also have a persistent sense of a “taste” of the gunge in my lungs coming up to the back of my throat. It is quite off-putting.
I see that my recent correspondent, John Clark, has answered the question I asked of him on my blog. He found me through the CLL Google Alert he subscribes to. Although I have used Google Alerts for work related things, I had not thought of it in respect of my CLL and learning more. Thank you John. I am pleased to hear that your treatment is going well. Incidentally if you or anyone else would like to make more direct contact with me or other CLL patients, the CLL Support Association may assist via email. Their website has a section titled “Patients Stories”, where my entry indicates that contact can be made through the association.
I hear from the Radio 4 programme “The Material World” of an interesting development involving the taking of garlic (pearls) in the treatment of cystic fibrosis for children. A doctor in Nottingham (I believe) is to run a clinical trial with it. The similarity - in some respects - between cystic fibrosis and bronchiectasis suggests to me that perhaps garlic pearls may help me, so I am starting taking two a day. I look up a couple of items on the internet to find that Norwegian experiments on mice two years ago had shown the potential of garlic, but the equivalent dosage for an average adult was 50 bulbs per day! I must ask Dr Jackson what he thinks.
I am still having to clear my lungs at least once per day. I do this on the bed. My physio method is still productive, so I guess I am doing it right. Strangely I am bringing more stuff up from my right lung than my left - another question for Dr Jackson. The physio - or more significantly the attendant coughing - is tiring and I am still having at least an hour and a half sleep most afternoons when I am not out doing something. We have Cath and Jim for supper Saturday evening and otherwise it is a quiet weekend.
I have a Monday afternoon clinic appointment at the RSCH, mainly for a check on the Hickman line site, and am seen by Vicky Tindell. There are no problems with the repair to the site and the stitches are due out on Thursday. Surprisingly my neutrophils are high, at 8.6, with the other counts as - Wbc: 11.8; Hbn: 11.8; and PLT: 120. It is decided that I should now start coming to the Thursday morning outpatients clinic on a weekly basis starting 7th February.
We have lunch at the Royal Oak at Wineham on Wednesday to discover that the well over 50 year Peacock family tenancy has come to an end. Tim bowed out in late November and a young couple has taken over, but are changing nothing! We meet Tim as we are leaving and he greets us as long lost friends. Tina even gets a kiss! I cannot wait to tell Mike Pont down in deepest France.
I am back to the Day Unit on Thursday to have my stitches out. They come out with ease. I am left with a small stab wound type of scar. Tina likes to liken it to a duelling scar! There is also still an amount of bruising from the removal procedure, but otherwise everything there is ok. My neutrophils are back to normal this time. My blood counts are - Wbc: 4.5; Neuts: 2.9; Lymph: 1.1; Hbn: 11.8; and PLT: 118. I do a bit of shopping in town before my appointment - a camera case and two long-wanted books. I keep my walking to a minimum as I am still conscious of my coughing, or having something in my lungs that may want to get out (!). I also have a persistent sense of a “taste” of the gunge in my lungs coming up to the back of my throat. It is quite off-putting.
I see that my recent correspondent, John Clark, has answered the question I asked of him on my blog. He found me through the CLL Google Alert he subscribes to. Although I have used Google Alerts for work related things, I had not thought of it in respect of my CLL and learning more. Thank you John. I am pleased to hear that your treatment is going well. Incidentally if you or anyone else would like to make more direct contact with me or other CLL patients, the CLL Support Association may assist via email. Their website has a section titled “Patients Stories”, where my entry indicates that contact can be made through the association.
I hear from the Radio 4 programme “The Material World” of an interesting development involving the taking of garlic (pearls) in the treatment of cystic fibrosis for children. A doctor in Nottingham (I believe) is to run a clinical trial with it. The similarity - in some respects - between cystic fibrosis and bronchiectasis suggests to me that perhaps garlic pearls may help me, so I am starting taking two a day. I look up a couple of items on the internet to find that Norwegian experiments on mice two years ago had shown the potential of garlic, but the equivalent dosage for an average adult was 50 bulbs per day! I must ask Dr Jackson what he thinks.
I am still having to clear my lungs at least once per day. I do this on the bed. My physio method is still productive, so I guess I am doing it right. Strangely I am bringing more stuff up from my right lung than my left - another question for Dr Jackson. The physio - or more significantly the attendant coughing - is tiring and I am still having at least an hour and a half sleep most afternoons when I am not out doing something. We have Cath and Jim for supper Saturday evening and otherwise it is a quiet weekend.
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