Friday 10th October 2008
I am posting this entry before trying to catch up the past three weeks for reasons which will be obvious. It is a big “Red Letter” day today with news from the West Sussex Primary Care Trust saying they will fund my Revlimid!!!! As you can imagine Tina and I jumped for joy. I have a huge thank you to send to Colin Ross of Horsham for his determination in taking the PCT to the High Court and winning his case. He opened the door and it is possible I am the first person to walk in after him – so to speak. I shall be discussing next moves with Tim Corbett et al on Monday. It was nice that Tim left a message on our answerphone as well, in case we hadn’t heard. Today is a long session at the Day Unit, so up earlier than usual to get there for 9am. I have a bag of platelets and then a session of Vigam. I am checked over by Dr Jo and mention the discomfort in my left upper chest and shoulder, which I have put down as a legacy of the acute constipation I had on Sunday. I have an ECG test which shows normal. My blood results today are - Wbc: 6.2; Neuts: 0.4; Lymph: 5.7; Hbn: 8.1; PLT: 13; CRP: 48. So my neutrophils are up from 0.1 on Monday – good news! – but I am anaemic again and will have a transfusion of red cells on Monday. My platelet count is still extremely low, but the blood test was taken before today’s transfusion, so the count could go up by Monday. My weight today is 75.6kgs but some of it is fluid on my legs. Now where has that come from? I eventually leave the hospital about 3.30pm and we arrive home to be greeted with the letter from the PCT. I call Matthew and text Anna and lots of family and friends with the good news. Keith drops by on his way home to join our celebration. I have a half glass of wine but later feel rather woozy. Perhaps I shouldn’t be drinking any alcohol at all while I am on Thalidomide! I had better check that out and see if it will also apply to Revlimid. I hope not!!
Sunday 12 October 2008
Friday 3 October 2008
A Second Week in Dock
Monday 15th to Sunday 21st September 2008
I sleep last night for an uninterrupted three hours from midnight to 3am, which is a real bonus. But I am still here after a week in which very little progress seems to have occurred. This view is shared by John Duncan, who is the duty ward consultant this week. He puts in place a plan to try to move things on. I am to have a CT scan of chest and sinuses, a referral to the chest consultant with a view to a bronchoscopy, a review of my current anti-biotics and I need to be given some platelets. I find that the cannula on the back of my right hand has leaked while I was having my morning infusion – all over my blanket and sheets! Not sure how much went in my vein!! I have a visit from Jim late morning and do a little work in the afternoon, filing the returned questionnaires relating to my project. Kate gets my fourth cannula into place on the back of my left forearm. It is a very good site and a good vein – and gives me more freedom of movement than any of the previous cannulas have done. My blood results are Wbc: 3.5; Neuts 0.0; Hbn: 10.4; PLT: 21; CRP: 174. So here I am with my immune system right on the floor! Tina visits in the evening after work. She can only get away at 6pm, so it makes for a long evening for her. My temperatures today have ranged from 36.9 to a peak of 38.4.
I am awake at 5.15am Tuesday morning coughing up lots nasty sputum, some of which is bloody. There is a lot of activity for me today with my going on to the anti-fungal, Ambisone, 215 mgs once daily - it looks like a large bag of liquid sherbet!! – I have a CT scan of my chest and sinuses and then have a PICC line fitted into my right upper arm. This is great as it is becoming extremely difficult to get into my veins. At last I am able to have Immodium and take one capsule after lunch. My blood results today are – Wbc: 2.4; Neuts: 0.0; Lymph: 2.0; Hbn: 93; PLT: 16; CRP: 153. My weight is 74kgs. I have two bags of platelets. A count of 16 is amazingly low. They definitely need beefing up ahead of the bronchoscopy I will have tomorrow and had to be transfused before the fitting of the PICC line. I get a chance to see the x-ray showing where my PICC line has gone inside my chest – up the main vein in my right arm and down into my chest just to the right of my sternum. Tina is joined by Mia Morris when she visits in the evening. Six hours after my PICC line is fitted I am getting soreness on my skin from the Dermafilm dressing that has been used. I knew this would happen as it was the same last April when I had my first one. So the dressing is changed to the type used with cannulas, although Dermafilm is still needed to cover the entry site as, being transparent, it means that the site is always visible. We will have to see how this works, but by 3am it is worse and the site is redressed again. I am nil-by-mouth from midnight ahead of the bronchoscopy first thing in the morning. I have two big sweats during the night and have two changes of T-shirt. My temperature today is checked six times and goes from 37 to a peak of 38.5 at 9.45pm.
No breakfast for me Wednesday morning and I am away to the Endoscopy Department just after 8.30am. I think the annoying secretions that have been tickling my throat for the past week seem to have gone - if so, that is very good news. Also it appears that the one Immodium capsule yesterday has worked! Hurray! I am in for the Bronchoscopy at 9.30am and out in 20 minutes. The actual procedure takes about 10 minutes. Kate Hurt is the practitioner with Mark Jackson looking on. Once again it is a most appalling experience and I am coughing and spluttering as the scope goes down the back of my throat. They get a suitable amount of samples of gunge for analysis and I am soon out into the recovery room. Unlike the last time, my recovery is comfortable and I am able to rest, read, do some Sudoku and I have no nasty after effects. Whilst lying there I have the urge for some proper fish and chips and resolve that Tina and I will have some together tomorrow evening. I am there for two hours getting over the sedation and having my blood pressure, oxygen levels and temperature regularly checked. In fact my oxygen level dips, so I have to have 4 litres of oxygen given to me before I can go. After lunch I have my PICC line dressing changed again and it is decided that it must be changed everyday to avoid my skin getting cut. My blood results today are – Wbc: 2.0; Neuts: 0.0; Lymph: 1.7; Hbn: 8.0; PLT: 27; CRP: 165. My weight is 74kgs. By late afternoon the news abroad is of world finance in total chaos. Lloyds TSB is “encouraged” by the government to take over HBOS at a good price per share by today’s values but less than a quarter of its valuation earlier this year. The US government comes out with a multi-million rescue package for the giant insurance company AIG. There seems to be no end in sight for what is the worst financial crisis since 1929. At 9pm I have a unit of red cells, with two more to follow first thing tomorrow. My temperature shows signs of improvement as I have no 38 degree peak today and it ranges from 36.7 to 37.8. However I am still having big sweats late evening and during the night, with a change of T-shirt being needed.
I am told by Kat on Thursday morning that the CT scan indicates that I have a bacterial infection, rather than fungal. However they want to see the results of the bronchoscopy samples before drawing any definitive conclusions. My blood results today are – Wbc: 2.2; Neuts: 0.0.; Lymph: 1.8; Hbn: 8.5: PLT: 18; CRP: 140. So my platelets are still only 18 after two units were pumped into me ahead of the bronchoscopy. What’s going on? I ask myself. My weight is again 74 kgs. Peter visits in the morning, just in time to share a cafetiere of coffee with me. Suzanne is still snuffling with the leftovers of her cold so she is having a stroll on the seafront. We have a good chat about all this dodgy dealing that has brought the ceiling crashing down on top of the world of finance. Peter always worked in rock solid government bonds and triple A company bonds. Not for him all this spivvy short selling and derivatives. Sr Pete also comes in to give me Holy Communion. After lunch I have visits from Vincent Meagher and Bill Swallow, so I have plenty of company today. Tina arrives about 6.30pm with our fish and chips and we indulge ourselves with the best meal of my stay so far! A bottle of Muscadet would have gone down well with it as well!!! But you can’t have everything. At 9pm my PICC line dressing is taken off to show that the area immediately around the entry site is pink and sore and that there are three separate small places below the securing plate where the skin has been cut into - all this since yesterday afternoon. Lucy redresses it with Mepore and with no Tegaderm at all. This means that the entry site is no longer visible, but at least the chances of further skin damage should be minimised. My temperatures today are 36.7 on three occasions and a maximum of 37.4. I have no sweats to speak of and do not have to change my T-shirt at all. This is all promising news. I sleep on the bed from midnight to 2am and then change into pyjamas and get into bed for the first time since I was admitted. I sleep soundly until past 5am. Things are definitely improving!!
It is Friday and I am still coughing up loads of bloody sputum when I stir in the morning, so that side of things does not seem to have changed. By 11am I have brought my blog right up the date at last!! I am seen by John Duncan who tells me I now have 0.1 of a neutrophyl – yippee!! – and that my CRP is down to 89. This is all good news but I still have inflammation in my lower lung. The team will review my treatment plan on Monday. He has stopped the Clarithromycin tablets. My blood results today are – Wbc: 3.1; Neuts: 0.1; Lymph: 2.9; Hbn: 11.1; PLT: 17; CRP: 89. My weight today is 73 kgs. I have a big sweat mid afternoon and my temperature peak before it must have been quite high but of course it isn’t possible to know what it was. My guess is that it was over 38. I get a phone call from Anna in Palm Springs – which is nice. They are off to Yosemite, Sequoia and Kings before taking the Amtrak to New York and home. I then have visits from Mia Morris and Fr David. It is most amusing as Niamh Dineen, the trainee nurse, is tending to me at the time. Fr David recognises her surname as coming from west Cork like him. It transpires that he knew her late uncle, who was a priest and then realises that he knew her father as well – what a small world! Tina is in to see me about 6.45pm and after that I have a quiet evening and night, dozing and listening to my i-pod. My temperatures today have ranged from 36 to 37.1, give or take that likely higher spike in the afternoon.
I trim my beard Saturday morning, which makes me feel a lot tidier. The big news today is the letter from the West Sussex PCT saying that they have put back their PIN panel’s considering my appeal “in order for specialist advice to be sought”. Strikes me they should have sought specialist advice in the first place, then they might have made the right decision. They have obviously been badly stung by the loss of their High Court case. I say “good”. I have a visit from Peter Felchlin at lunchtime. Marva and he had a good time in Bath and Cornwall and were able to find Wakem family gravestones in Cornish churchyards dating well back into the 18th century. We are shortly joined by Matthew, Lily and Mia. Lily enjoys her rides on my moving bed, which she remembers from 18 months ago. Mia is far less keen. My blood results today are – Wbc: 2.9; Neuts: 0.1; Lymph: 2.4; Hbn: 10.7: PLT: 19; CRP: 50. So that is more good news on the level of infection, which has now been going down day by day. My weight today is still 73kgs. Tina and Marva visit me around 4pm and the rest of the day I spend quietly, reading and listening to the Ryder Cup golf on the radio. My temperature today varies from 36.3 to 37.4 and no sweats.
I am seen again by John Duncan on Sunday morning. With things progressing, albeit very slowly, they will be looking to discharge me next week, possibly towards the end of the week. They could continue giving me anti-biotics in the Day Unit but the key issue is to get my chest right first and to be sure that the infection is not fungal as well as bacterial. My blood results today are – Wbc: 2.1; Neuts: 0.1; Lymph: 1.6; Hbn: 10.4; PLT: 17; CRP: 32. My weight is the same – 73 kgs. I do some work on my project for a few hours either side of lunch and at 3pm have a bag of platelets. Sarah cleans and redresses my PICC line. It is looking good and the soreness has lessened. Tina, Marva and Peter visit after having lunch with Matthew and the girls at Shermanbury. I say my farewells and bon voyage to the Felchlins as they fly back to LA tomorrow. I have another quiet evening listening to the USA beating Europe in the Ryder Cup. I doze through to 1.30am and then take to my bed. This is only the second time so far in these past two weeks. I sleep very well.
I sleep last night for an uninterrupted three hours from midnight to 3am, which is a real bonus. But I am still here after a week in which very little progress seems to have occurred. This view is shared by John Duncan, who is the duty ward consultant this week. He puts in place a plan to try to move things on. I am to have a CT scan of chest and sinuses, a referral to the chest consultant with a view to a bronchoscopy, a review of my current anti-biotics and I need to be given some platelets. I find that the cannula on the back of my right hand has leaked while I was having my morning infusion – all over my blanket and sheets! Not sure how much went in my vein!! I have a visit from Jim late morning and do a little work in the afternoon, filing the returned questionnaires relating to my project. Kate gets my fourth cannula into place on the back of my left forearm. It is a very good site and a good vein – and gives me more freedom of movement than any of the previous cannulas have done. My blood results are Wbc: 3.5; Neuts 0.0; Hbn: 10.4; PLT: 21; CRP: 174. So here I am with my immune system right on the floor! Tina visits in the evening after work. She can only get away at 6pm, so it makes for a long evening for her. My temperatures today have ranged from 36.9 to a peak of 38.4.
I am awake at 5.15am Tuesday morning coughing up lots nasty sputum, some of which is bloody. There is a lot of activity for me today with my going on to the anti-fungal, Ambisone, 215 mgs once daily - it looks like a large bag of liquid sherbet!! – I have a CT scan of my chest and sinuses and then have a PICC line fitted into my right upper arm. This is great as it is becoming extremely difficult to get into my veins. At last I am able to have Immodium and take one capsule after lunch. My blood results today are – Wbc: 2.4; Neuts: 0.0; Lymph: 2.0; Hbn: 93; PLT: 16; CRP: 153. My weight is 74kgs. I have two bags of platelets. A count of 16 is amazingly low. They definitely need beefing up ahead of the bronchoscopy I will have tomorrow and had to be transfused before the fitting of the PICC line. I get a chance to see the x-ray showing where my PICC line has gone inside my chest – up the main vein in my right arm and down into my chest just to the right of my sternum. Tina is joined by Mia Morris when she visits in the evening. Six hours after my PICC line is fitted I am getting soreness on my skin from the Dermafilm dressing that has been used. I knew this would happen as it was the same last April when I had my first one. So the dressing is changed to the type used with cannulas, although Dermafilm is still needed to cover the entry site as, being transparent, it means that the site is always visible. We will have to see how this works, but by 3am it is worse and the site is redressed again. I am nil-by-mouth from midnight ahead of the bronchoscopy first thing in the morning. I have two big sweats during the night and have two changes of T-shirt. My temperature today is checked six times and goes from 37 to a peak of 38.5 at 9.45pm.
No breakfast for me Wednesday morning and I am away to the Endoscopy Department just after 8.30am. I think the annoying secretions that have been tickling my throat for the past week seem to have gone - if so, that is very good news. Also it appears that the one Immodium capsule yesterday has worked! Hurray! I am in for the Bronchoscopy at 9.30am and out in 20 minutes. The actual procedure takes about 10 minutes. Kate Hurt is the practitioner with Mark Jackson looking on. Once again it is a most appalling experience and I am coughing and spluttering as the scope goes down the back of my throat. They get a suitable amount of samples of gunge for analysis and I am soon out into the recovery room. Unlike the last time, my recovery is comfortable and I am able to rest, read, do some Sudoku and I have no nasty after effects. Whilst lying there I have the urge for some proper fish and chips and resolve that Tina and I will have some together tomorrow evening. I am there for two hours getting over the sedation and having my blood pressure, oxygen levels and temperature regularly checked. In fact my oxygen level dips, so I have to have 4 litres of oxygen given to me before I can go. After lunch I have my PICC line dressing changed again and it is decided that it must be changed everyday to avoid my skin getting cut. My blood results today are – Wbc: 2.0; Neuts: 0.0; Lymph: 1.7; Hbn: 8.0; PLT: 27; CRP: 165. My weight is 74kgs. By late afternoon the news abroad is of world finance in total chaos. Lloyds TSB is “encouraged” by the government to take over HBOS at a good price per share by today’s values but less than a quarter of its valuation earlier this year. The US government comes out with a multi-million rescue package for the giant insurance company AIG. There seems to be no end in sight for what is the worst financial crisis since 1929. At 9pm I have a unit of red cells, with two more to follow first thing tomorrow. My temperature shows signs of improvement as I have no 38 degree peak today and it ranges from 36.7 to 37.8. However I am still having big sweats late evening and during the night, with a change of T-shirt being needed.
I am told by Kat on Thursday morning that the CT scan indicates that I have a bacterial infection, rather than fungal. However they want to see the results of the bronchoscopy samples before drawing any definitive conclusions. My blood results today are – Wbc: 2.2; Neuts: 0.0.; Lymph: 1.8; Hbn: 8.5: PLT: 18; CRP: 140. So my platelets are still only 18 after two units were pumped into me ahead of the bronchoscopy. What’s going on? I ask myself. My weight is again 74 kgs. Peter visits in the morning, just in time to share a cafetiere of coffee with me. Suzanne is still snuffling with the leftovers of her cold so she is having a stroll on the seafront. We have a good chat about all this dodgy dealing that has brought the ceiling crashing down on top of the world of finance. Peter always worked in rock solid government bonds and triple A company bonds. Not for him all this spivvy short selling and derivatives. Sr Pete also comes in to give me Holy Communion. After lunch I have visits from Vincent Meagher and Bill Swallow, so I have plenty of company today. Tina arrives about 6.30pm with our fish and chips and we indulge ourselves with the best meal of my stay so far! A bottle of Muscadet would have gone down well with it as well!!! But you can’t have everything. At 9pm my PICC line dressing is taken off to show that the area immediately around the entry site is pink and sore and that there are three separate small places below the securing plate where the skin has been cut into - all this since yesterday afternoon. Lucy redresses it with Mepore and with no Tegaderm at all. This means that the entry site is no longer visible, but at least the chances of further skin damage should be minimised. My temperatures today are 36.7 on three occasions and a maximum of 37.4. I have no sweats to speak of and do not have to change my T-shirt at all. This is all promising news. I sleep on the bed from midnight to 2am and then change into pyjamas and get into bed for the first time since I was admitted. I sleep soundly until past 5am. Things are definitely improving!!
It is Friday and I am still coughing up loads of bloody sputum when I stir in the morning, so that side of things does not seem to have changed. By 11am I have brought my blog right up the date at last!! I am seen by John Duncan who tells me I now have 0.1 of a neutrophyl – yippee!! – and that my CRP is down to 89. This is all good news but I still have inflammation in my lower lung. The team will review my treatment plan on Monday. He has stopped the Clarithromycin tablets. My blood results today are – Wbc: 3.1; Neuts: 0.1; Lymph: 2.9; Hbn: 11.1; PLT: 17; CRP: 89. My weight today is 73 kgs. I have a big sweat mid afternoon and my temperature peak before it must have been quite high but of course it isn’t possible to know what it was. My guess is that it was over 38. I get a phone call from Anna in Palm Springs – which is nice. They are off to Yosemite, Sequoia and Kings before taking the Amtrak to New York and home. I then have visits from Mia Morris and Fr David. It is most amusing as Niamh Dineen, the trainee nurse, is tending to me at the time. Fr David recognises her surname as coming from west Cork like him. It transpires that he knew her late uncle, who was a priest and then realises that he knew her father as well – what a small world! Tina is in to see me about 6.45pm and after that I have a quiet evening and night, dozing and listening to my i-pod. My temperatures today have ranged from 36 to 37.1, give or take that likely higher spike in the afternoon.
I trim my beard Saturday morning, which makes me feel a lot tidier. The big news today is the letter from the West Sussex PCT saying that they have put back their PIN panel’s considering my appeal “in order for specialist advice to be sought”. Strikes me they should have sought specialist advice in the first place, then they might have made the right decision. They have obviously been badly stung by the loss of their High Court case. I say “good”. I have a visit from Peter Felchlin at lunchtime. Marva and he had a good time in Bath and Cornwall and were able to find Wakem family gravestones in Cornish churchyards dating well back into the 18th century. We are shortly joined by Matthew, Lily and Mia. Lily enjoys her rides on my moving bed, which she remembers from 18 months ago. Mia is far less keen. My blood results today are – Wbc: 2.9; Neuts: 0.1; Lymph: 2.4; Hbn: 10.7: PLT: 19; CRP: 50. So that is more good news on the level of infection, which has now been going down day by day. My weight today is still 73kgs. Tina and Marva visit me around 4pm and the rest of the day I spend quietly, reading and listening to the Ryder Cup golf on the radio. My temperature today varies from 36.3 to 37.4 and no sweats.
I am seen again by John Duncan on Sunday morning. With things progressing, albeit very slowly, they will be looking to discharge me next week, possibly towards the end of the week. They could continue giving me anti-biotics in the Day Unit but the key issue is to get my chest right first and to be sure that the infection is not fungal as well as bacterial. My blood results today are – Wbc: 2.1; Neuts: 0.1; Lymph: 1.6; Hbn: 10.4; PLT: 17; CRP: 32. My weight is the same – 73 kgs. I do some work on my project for a few hours either side of lunch and at 3pm have a bag of platelets. Sarah cleans and redresses my PICC line. It is looking good and the soreness has lessened. Tina, Marva and Peter visit after having lunch with Matthew and the girls at Shermanbury. I say my farewells and bon voyage to the Felchlins as they fly back to LA tomorrow. I have another quiet evening listening to the USA beating Europe in the Ryder Cup. I doze through to 1.30am and then take to my bed. This is only the second time so far in these past two weeks. I sleep very well.
The Ceiling Falls In
Monday 8th to Sunday 14th September 2008
I work from home on Monday. Doing my physio around 12.30pm I realise that there is a change in the quantity and nature of the gunge I cough up – the official terms are “sputum” and “expectorate”. As the afternoon progresses I am constantly coughing up more stuff, then feeling fluey and muzzy headed. I check my temperature around 4.15p – mid 37s – and by 5pm it is 38. What an unbelievable reaction after just one short course of the steroid. I call the Day Unit and am advised to check in through A & E but that a bed was available in the Medical Assessment and Surgical Unit (MASU). Tina and I check into A & E and are immediately attended to, which is excellent. After preliminary questioning, I am cannulated with remarkable ease by the nurse. Even more remarkable, it is my right arm. This is the first successful entry into a vein in my right arm for the first time this year. I have a chest x-ray and am seen by a doctor who tells me I have “pneumonia” in my right lung. I later find out that pneumonia – which has quite dramatic connotations – is a generic term for chest infection, but that of course isn’t explained – an unnecessary cause for anxiety in my opinion. My temperature at 8pm is 39 – I have never had that before – and at 10pm is down a bit to 38.2. I am prescribed Clarithromycin 500mg tablets twice daily, 1 gram of intra-veinous Amoxycillin three times daily and put on a large saline drip. My blood results are soon with me – Wbc: 20.7; Neuts: 1.2; Lymph: 19; Hbn: 9.3; PLT: 42; and CRP: 88.
I am moved to MASU at 11pm, Tina leaves for home and I try to settle down for the night. This is more easily said than done as I am coughing and spluttering all the time, especially when laying horizontal. So I prop myself up, but I cannot sleep. Around 4.30am I coughing up stuff big time and it makes my shoulders ache so much I have paracetomol. I have a big head sweat around 6am and my sputum is now rather bloody. I had arranged five appointments in London today and tomorrow and have to walk up to the 6th floor foyer area to get a signal on my phone. Luckily I am able to get through to everyone to cancel. I get sympathetic responses. But this is a real nuisance as it took me ages to make the appointments in the first place and I will have to start again, as and when I am back on my feet. Kat sees me at 10.30am, changes me on to Tazocin – three times daily - and orders another saline drip. I am later seen by a new haematology consultant – well new to me – Timothy Chevassut. At 12.30pm I am moved to the Haemotology Ward in the six bed room they share with Renal. My lunch is lousy. I realise that I have not done my physio since Monday morning, so have a big session. I have intra-veinous Gentamycin – once daily - added to the Tazocin. Tina arrives late afternoon. I am feeling absolutely knackered and my temperature at 6pm is 39.9. Now that is HIGH! I have two paracetomol and a big sweat. I am dozing so much that when Tina leaves for home I am asleep. That is the first time that has ever happened. By 11pm my temperature is 38.2 and I am given a bag of platelets. I then get the shivers and shakes, as if I am hot and cold at the same time. Jess tells me it is “rigour” which can occur as the body cools down from a high temperature. She gives me a couple of paracetmol and it soon stops. But it was a funny experience while it lasted. I have more sweats through the night and have to change my T-shirt twice. I am feeling really grotty.
My early morning temperature check on Wednesday shows me still up at 38.3. I have a home-supplied breakfast of yogourt, muesli and mango. It is much better than the hospital food. By 10am my eyes are not focussing well, I am feeling weak headed and very dozy. My blood results today are – Wbc: 9.9; Neuts: 0.6; Lymph: 8.2; Hbn: 6.9; PLT: 42; and a CRP reading of 434. So I am neutropenic and seriously anaemic, with a very high indication of infection. Secretions are trickling in at the bottom of my throat, from where I don’t know and these are making me cough involuntarily, which then brings up stuff from lower down. This makes the muscles in my stomach, chest and diaphragm very sore. I get a surprise visit from Matthew in the morning - which is great – and we are shortly joined by Tina. I am seen by Timothy Chevassut and team. He cannot say for certain what the cause of the infection is, but its following immediately on the steroids cannot just be coincidental. I am to have two units of red cells, GCSF daily and to resume my colomycin by nebuliser. I am told that I will be here for a week. On the positive side my appetite has not been affected, although the taste of water is not too nice. So I am drinking diet coke and ginger beer, which taste much nicer. I have two very productive physio sessions and resolve to maintain this regime throughout my stay. Tina comes in at 5pm and she helps me to have my first wash. I have been too unsteady on my feet to have a shower or wash properly. I have anti-biotics and then blood, meanwhile my temperature moves from 38.7 to 38.1 to 36.9. By midnight the anti-biotics has one certain effect – I now have diarrhoea! I cannot sleep and sit up reading and doing Sudoku until 4.30am, coughing and spluttering.
The big story today is the High Court decision that West Sussex PCT must fund the supply of Revlimid to Colin Ross of Horsham, who has multiple myeloma. His consultant had unsuccessfully gone through the application and appeal process but Colin Ross had decided to challenge the PCT’s decision. I will be keen to read the full judgement as it has major implications for me, with my appeal supposedly being heard on Friday. It is difficult to know at this stage if any form of precedent has been set.
Thursday morning, my temperature at 6.30am is 37.6 and my diarrhoea continues - with regularity! It is beginning to give me a lot of discomfort. I duly supply a sample. I have established my breakfast regime of yogourt, bran flakes, cut fruit and honey. I get a text message from Anna in Los Angeles, which is lovely. My blood results today are – Wbc: 4.3; Neuts: 0.4; Lymph: 3.7; Hbn: 8.2; PLT 27; and CRP down to 299. My weight is 80kgs, but I put two or three kilos down to fluid in my legs from the steroid. I had noticed on the weekend that the backs of my thighs and knees had tightened up slightly. Sister Peter comes in late morning and gives me Holy Communion. She is such a lovely person. I have another two units of red cells starting around 2pm, but running slowly because of my temperature. This is followed by the Gentamycin, three hours of Vigam – my monthly dose – and then the Tazocin. It is all over by 2.15am – 12 hours of continuous infusions! Over that 12 hours my temperature is checked six times and varies from 36.8 to 38.5. Meanwhile in the late afternoon Tina is in and I can have another wash. In the evening I start back into John O’Farrell’s very amusing “An Utterly Impartial History of Britain – or 2000 Years of Upper Class Idiots in Charge”. I had a very sweaty night, changing my T-shirt twice, regularly having to visit the toilet and having some really weird dreams.
Friday morning starts with Tazocin, followed by another saline drip as I am at risk of dehydrating with all my diarrhoea. My physio is still rather painful and not helped that I have extra secretions finding their way to the back of my throat and making me cough involuntarily and earlier than I want to during the exercises. I have to rest up afterwards as it is very tiring. Timothy Chavassut changes me from Tazocin to Meropenem three times per day, as this may be more effective. I am also to resume Colomycin using my own nebuliser machine. My blood results today are – Wbc: 2.6; Neuts: 0.2; Lymph: 2.1; Hbn: 9.4; PLT: 18 (YES – 18!!!); CRP: 190. I am moved to room 3 mid afternoon and at last having some privacy. This gives me my own bathroom and I wash myself for the first time. I am recannulated for the second time since I have been here. Two days seems to be the limit the nurses want to risk with a cannula so as to prevent any additional infection. Tina is with me early evening and Matthew calls by later as Charrise is singing in Kemptown. He fixes my i-pod, which had refused to get going for me. I now can have music on tap. I have a bag of platelets to move my count up from an unprecedented 18. My temperatures today have hovered around 37.1 and 37.4 but peaked once at 38.4.
Today is the day West Sussex PCT is supposed to hear my appeal. I would be surprised if they do in fact hear it. I think it more likely they will delay it while they take legal advice following the decision of the High Court. If they turn me down, I would see it as a “knee jerk” reaction. The countrywide debate on funding of “individual needs” drugs is still bubbling, with the highly respected Kings Fund saying that people who can afford it should be allowed to “top up” the funding of non approved drugs, although they should also pay for their ongoing treatment relating to their condition. But they should not lose their rights to other forms of free NHS provision - as seems to be the case at the moment. Sounds like two-tiers could be forcing its way into the NHS and that would be really bad news.
By Saturday I think I am beginning to feel a bit better in myself, no doubt because of the four units of red cells I have been given. It does not mean that any of the symptoms I came in with have changed at all, because they have not, although my taste for water has improved slightly. My blood results today are – Wbc: 2.9; Neuts: 0.6; Lymph: 1.2; HBN: 9.4; PLT: 27; CRP: 191. My weight is 80kgs. This is high for me and probably due to fluid in my legs as a result of the steroids last week. Have I mentioned that before? I can’t remember. Tina, Marva and Peter come late morning. M & P flew in from LA last evening and are staying with us this weekend and next. Just our luck I should be in here! They bring me a super book “All the Saints of the City of the Angels” – an artistic tour of the many LA streets which are named after saints. It is beautifully illustrated from paintings by the author and tells fascinating stories of the respective saints and the streets themselves. Mary Alston from work joins us just before they leave and so at last meets Tina. About an hour later, as she is going, in come Tony and Pam. This is all very nice. Meanwhile I have five attempts made to get a blood sample from my arm to check on my Gentamycin levels – ouch!! My temperatures today are measured six times and vary between 37 and 38.2. I am still sleeping upright to minimise my coughing. This tends to give me neck ache over time, such that by 5.20am I have a headache and am given two Paracetomol to get rid of it.
Chaos breaks out on the international money markets on Sunday morning as the long established US bank Lehman Brothers goes belly up. It is another victim of the sub-prime mortgage scandal and the horrendous mess that banks all over the world have got themselves into by selling clients debts to other banks and engaging in dead dodgy financial dealings. Meanwhile the US government forces Merrill Lynch to be taken over by the Bank of America - one of the more solid operators over there. My bloods today are – Wbc: 1.9; Neuts: 0.1; Lymph: 1.7; Hbn: 8.9; PLT: 18; CRP: 146 - so no real change there, although I feeling much stronger in myself. My weight has dropped to 77kgs with the loss of the fluid from my legs. I have Holy Communion from Sr Peter at midday and after lunch and my physio I find I am in the frame of mind to resume typing my blog. I have to catch up from Tuesday of last week, just before the start of my new treatment, so there is plenty to be done. Tina, Marva and Peter arrive mid afternoon after having lunch at Matthew’s. Tina has brought in a CD which John Searle recorded for me this morning of the folk Mass he led to celebrate Racial Justice Sunday - what a lovely idea! It was also a Mass said for Tina’s parents, John and Eve, so all very appropriate. My temperature is measured four times today and range from 37.3 to 38 – still too high.
I work from home on Monday. Doing my physio around 12.30pm I realise that there is a change in the quantity and nature of the gunge I cough up – the official terms are “sputum” and “expectorate”. As the afternoon progresses I am constantly coughing up more stuff, then feeling fluey and muzzy headed. I check my temperature around 4.15p – mid 37s – and by 5pm it is 38. What an unbelievable reaction after just one short course of the steroid. I call the Day Unit and am advised to check in through A & E but that a bed was available in the Medical Assessment and Surgical Unit (MASU). Tina and I check into A & E and are immediately attended to, which is excellent. After preliminary questioning, I am cannulated with remarkable ease by the nurse. Even more remarkable, it is my right arm. This is the first successful entry into a vein in my right arm for the first time this year. I have a chest x-ray and am seen by a doctor who tells me I have “pneumonia” in my right lung. I later find out that pneumonia – which has quite dramatic connotations – is a generic term for chest infection, but that of course isn’t explained – an unnecessary cause for anxiety in my opinion. My temperature at 8pm is 39 – I have never had that before – and at 10pm is down a bit to 38.2. I am prescribed Clarithromycin 500mg tablets twice daily, 1 gram of intra-veinous Amoxycillin three times daily and put on a large saline drip. My blood results are soon with me – Wbc: 20.7; Neuts: 1.2; Lymph: 19; Hbn: 9.3; PLT: 42; and CRP: 88.
I am moved to MASU at 11pm, Tina leaves for home and I try to settle down for the night. This is more easily said than done as I am coughing and spluttering all the time, especially when laying horizontal. So I prop myself up, but I cannot sleep. Around 4.30am I coughing up stuff big time and it makes my shoulders ache so much I have paracetomol. I have a big head sweat around 6am and my sputum is now rather bloody. I had arranged five appointments in London today and tomorrow and have to walk up to the 6th floor foyer area to get a signal on my phone. Luckily I am able to get through to everyone to cancel. I get sympathetic responses. But this is a real nuisance as it took me ages to make the appointments in the first place and I will have to start again, as and when I am back on my feet. Kat sees me at 10.30am, changes me on to Tazocin – three times daily - and orders another saline drip. I am later seen by a new haematology consultant – well new to me – Timothy Chevassut. At 12.30pm I am moved to the Haemotology Ward in the six bed room they share with Renal. My lunch is lousy. I realise that I have not done my physio since Monday morning, so have a big session. I have intra-veinous Gentamycin – once daily - added to the Tazocin. Tina arrives late afternoon. I am feeling absolutely knackered and my temperature at 6pm is 39.9. Now that is HIGH! I have two paracetomol and a big sweat. I am dozing so much that when Tina leaves for home I am asleep. That is the first time that has ever happened. By 11pm my temperature is 38.2 and I am given a bag of platelets. I then get the shivers and shakes, as if I am hot and cold at the same time. Jess tells me it is “rigour” which can occur as the body cools down from a high temperature. She gives me a couple of paracetmol and it soon stops. But it was a funny experience while it lasted. I have more sweats through the night and have to change my T-shirt twice. I am feeling really grotty.
My early morning temperature check on Wednesday shows me still up at 38.3. I have a home-supplied breakfast of yogourt, muesli and mango. It is much better than the hospital food. By 10am my eyes are not focussing well, I am feeling weak headed and very dozy. My blood results today are – Wbc: 9.9; Neuts: 0.6; Lymph: 8.2; Hbn: 6.9; PLT: 42; and a CRP reading of 434. So I am neutropenic and seriously anaemic, with a very high indication of infection. Secretions are trickling in at the bottom of my throat, from where I don’t know and these are making me cough involuntarily, which then brings up stuff from lower down. This makes the muscles in my stomach, chest and diaphragm very sore. I get a surprise visit from Matthew in the morning - which is great – and we are shortly joined by Tina. I am seen by Timothy Chevassut and team. He cannot say for certain what the cause of the infection is, but its following immediately on the steroids cannot just be coincidental. I am to have two units of red cells, GCSF daily and to resume my colomycin by nebuliser. I am told that I will be here for a week. On the positive side my appetite has not been affected, although the taste of water is not too nice. So I am drinking diet coke and ginger beer, which taste much nicer. I have two very productive physio sessions and resolve to maintain this regime throughout my stay. Tina comes in at 5pm and she helps me to have my first wash. I have been too unsteady on my feet to have a shower or wash properly. I have anti-biotics and then blood, meanwhile my temperature moves from 38.7 to 38.1 to 36.9. By midnight the anti-biotics has one certain effect – I now have diarrhoea! I cannot sleep and sit up reading and doing Sudoku until 4.30am, coughing and spluttering.
The big story today is the High Court decision that West Sussex PCT must fund the supply of Revlimid to Colin Ross of Horsham, who has multiple myeloma. His consultant had unsuccessfully gone through the application and appeal process but Colin Ross had decided to challenge the PCT’s decision. I will be keen to read the full judgement as it has major implications for me, with my appeal supposedly being heard on Friday. It is difficult to know at this stage if any form of precedent has been set.
Thursday morning, my temperature at 6.30am is 37.6 and my diarrhoea continues - with regularity! It is beginning to give me a lot of discomfort. I duly supply a sample. I have established my breakfast regime of yogourt, bran flakes, cut fruit and honey. I get a text message from Anna in Los Angeles, which is lovely. My blood results today are – Wbc: 4.3; Neuts: 0.4; Lymph: 3.7; Hbn: 8.2; PLT 27; and CRP down to 299. My weight is 80kgs, but I put two or three kilos down to fluid in my legs from the steroid. I had noticed on the weekend that the backs of my thighs and knees had tightened up slightly. Sister Peter comes in late morning and gives me Holy Communion. She is such a lovely person. I have another two units of red cells starting around 2pm, but running slowly because of my temperature. This is followed by the Gentamycin, three hours of Vigam – my monthly dose – and then the Tazocin. It is all over by 2.15am – 12 hours of continuous infusions! Over that 12 hours my temperature is checked six times and varies from 36.8 to 38.5. Meanwhile in the late afternoon Tina is in and I can have another wash. In the evening I start back into John O’Farrell’s very amusing “An Utterly Impartial History of Britain – or 2000 Years of Upper Class Idiots in Charge”. I had a very sweaty night, changing my T-shirt twice, regularly having to visit the toilet and having some really weird dreams.
Friday morning starts with Tazocin, followed by another saline drip as I am at risk of dehydrating with all my diarrhoea. My physio is still rather painful and not helped that I have extra secretions finding their way to the back of my throat and making me cough involuntarily and earlier than I want to during the exercises. I have to rest up afterwards as it is very tiring. Timothy Chavassut changes me from Tazocin to Meropenem three times per day, as this may be more effective. I am also to resume Colomycin using my own nebuliser machine. My blood results today are – Wbc: 2.6; Neuts: 0.2; Lymph: 2.1; Hbn: 9.4; PLT: 18 (YES – 18!!!); CRP: 190. I am moved to room 3 mid afternoon and at last having some privacy. This gives me my own bathroom and I wash myself for the first time. I am recannulated for the second time since I have been here. Two days seems to be the limit the nurses want to risk with a cannula so as to prevent any additional infection. Tina is with me early evening and Matthew calls by later as Charrise is singing in Kemptown. He fixes my i-pod, which had refused to get going for me. I now can have music on tap. I have a bag of platelets to move my count up from an unprecedented 18. My temperatures today have hovered around 37.1 and 37.4 but peaked once at 38.4.
Today is the day West Sussex PCT is supposed to hear my appeal. I would be surprised if they do in fact hear it. I think it more likely they will delay it while they take legal advice following the decision of the High Court. If they turn me down, I would see it as a “knee jerk” reaction. The countrywide debate on funding of “individual needs” drugs is still bubbling, with the highly respected Kings Fund saying that people who can afford it should be allowed to “top up” the funding of non approved drugs, although they should also pay for their ongoing treatment relating to their condition. But they should not lose their rights to other forms of free NHS provision - as seems to be the case at the moment. Sounds like two-tiers could be forcing its way into the NHS and that would be really bad news.
By Saturday I think I am beginning to feel a bit better in myself, no doubt because of the four units of red cells I have been given. It does not mean that any of the symptoms I came in with have changed at all, because they have not, although my taste for water has improved slightly. My blood results today are – Wbc: 2.9; Neuts: 0.6; Lymph: 1.2; HBN: 9.4; PLT: 27; CRP: 191. My weight is 80kgs. This is high for me and probably due to fluid in my legs as a result of the steroids last week. Have I mentioned that before? I can’t remember. Tina, Marva and Peter come late morning. M & P flew in from LA last evening and are staying with us this weekend and next. Just our luck I should be in here! They bring me a super book “All the Saints of the City of the Angels” – an artistic tour of the many LA streets which are named after saints. It is beautifully illustrated from paintings by the author and tells fascinating stories of the respective saints and the streets themselves. Mary Alston from work joins us just before they leave and so at last meets Tina. About an hour later, as she is going, in come Tony and Pam. This is all very nice. Meanwhile I have five attempts made to get a blood sample from my arm to check on my Gentamycin levels – ouch!! My temperatures today are measured six times and vary between 37 and 38.2. I am still sleeping upright to minimise my coughing. This tends to give me neck ache over time, such that by 5.20am I have a headache and am given two Paracetomol to get rid of it.
Chaos breaks out on the international money markets on Sunday morning as the long established US bank Lehman Brothers goes belly up. It is another victim of the sub-prime mortgage scandal and the horrendous mess that banks all over the world have got themselves into by selling clients debts to other banks and engaging in dead dodgy financial dealings. Meanwhile the US government forces Merrill Lynch to be taken over by the Bank of America - one of the more solid operators over there. My bloods today are – Wbc: 1.9; Neuts: 0.1; Lymph: 1.7; Hbn: 8.9; PLT: 18; CRP: 146 - so no real change there, although I feeling much stronger in myself. My weight has dropped to 77kgs with the loss of the fluid from my legs. I have Holy Communion from Sr Peter at midday and after lunch and my physio I find I am in the frame of mind to resume typing my blog. I have to catch up from Tuesday of last week, just before the start of my new treatment, so there is plenty to be done. Tina, Marva and Peter arrive mid afternoon after having lunch at Matthew’s. Tina has brought in a CD which John Searle recorded for me this morning of the folk Mass he led to celebrate Racial Justice Sunday - what a lovely idea! It was also a Mass said for Tina’s parents, John and Eve, so all very appropriate. My temperature is measured four times today and range from 37.3 to 38 – still too high.
I Start My New Treatment
Monday 1st to Sunday 7th September 2008
I am catching up on this week’s blog entry more than two weeks later than intended for reasons that will be obvious in my next week’s entry. I cancel my appointments in Tottenham for the day as I am going down to the RSCH in Brighton for my blood transfusion. Terry and Lesley call by in the morning as Tina has asked Terry if he could help us out with taking some stuff to the tip. They stop for coffee on the way back. Tina drops me off at 1.15pm for my transfusion. My two units only take three hours this time as they are now able to separate out the red cells from the other blood products, so that I do not need quite the quantity I had before. Clever aren’t they? I am on the phone quite a bit making work appointments for this week and next. I am still weary for the rest of the day.
On Tuesday I am back to Brighton for my monthly Pentamidine nebuliser, followed by clinic with Tim Corbett to discuss my new treatment regime and to collect my medications. My lymphocyte count is up to 18.7 and my platelets are down at 42, although the neutrophils are holding up at 1.8. Tim makes the point that there may be a risk of infection associated with my being treated with Dexamethasone (a steroid), due to my already compromised immune system. How prophetic that turns out to be!! There is also a risk of blood clotting with the Thalidomide.I should go on to aspirin to thin the blood when my platelets count goes above 50. They are well below that mark today so I must await developments. The regime is 10mgs of Dexamethasone for four days every two weeks, to run for two or three months, with one daily dose of 50mgs of Thalidomide ad infinitum – or until approval for Revlimid comes through – ha ha!!
I have a day in north London on Wednesday and work from home on Thursday and Friday and start the treatment Thursday morning. The big breakthrough news off the CLL Google alerts today is that scientists in Cardiff University and the Institute of Cancer Research have identified six genes associated with CLL, which could increase a person’s risk of contracting it. This is of course only the first tentative step towards a potential prevention programme, but could give encouragement to future generations.
We have a day shopping in Tunbridge Wells and meet up with Carol for lunch. I am looking for a decent pair of brown ankle boots, but decide to reflect on the prices asked - £100 and £120!! I am finding that my taste buds are changing a bit – water, Smoothies and even beer. I am also getting hiccoughs - all down to the steroids. However the good news is that after only two days medium sized “Henry” in my left armpit has reduced significantly in size – amazing. The Thalidomide, which I take in the evening, is, as predicted, giving me heavy eyelids and a general drowsy effect mainly overnight, rather than running into the day. I have my last dose of steroids on Sunday morning and we have Matthew, Charrise and the girls for lunch. Everything seems hunky dory.
I am catching up on this week’s blog entry more than two weeks later than intended for reasons that will be obvious in my next week’s entry. I cancel my appointments in Tottenham for the day as I am going down to the RSCH in Brighton for my blood transfusion. Terry and Lesley call by in the morning as Tina has asked Terry if he could help us out with taking some stuff to the tip. They stop for coffee on the way back. Tina drops me off at 1.15pm for my transfusion. My two units only take three hours this time as they are now able to separate out the red cells from the other blood products, so that I do not need quite the quantity I had before. Clever aren’t they? I am on the phone quite a bit making work appointments for this week and next. I am still weary for the rest of the day.
On Tuesday I am back to Brighton for my monthly Pentamidine nebuliser, followed by clinic with Tim Corbett to discuss my new treatment regime and to collect my medications. My lymphocyte count is up to 18.7 and my platelets are down at 42, although the neutrophils are holding up at 1.8. Tim makes the point that there may be a risk of infection associated with my being treated with Dexamethasone (a steroid), due to my already compromised immune system. How prophetic that turns out to be!! There is also a risk of blood clotting with the Thalidomide.I should go on to aspirin to thin the blood when my platelets count goes above 50. They are well below that mark today so I must await developments. The regime is 10mgs of Dexamethasone for four days every two weeks, to run for two or three months, with one daily dose of 50mgs of Thalidomide ad infinitum – or until approval for Revlimid comes through – ha ha!!
I have a day in north London on Wednesday and work from home on Thursday and Friday and start the treatment Thursday morning. The big breakthrough news off the CLL Google alerts today is that scientists in Cardiff University and the Institute of Cancer Research have identified six genes associated with CLL, which could increase a person’s risk of contracting it. This is of course only the first tentative step towards a potential prevention programme, but could give encouragement to future generations.
We have a day shopping in Tunbridge Wells and meet up with Carol for lunch. I am looking for a decent pair of brown ankle boots, but decide to reflect on the prices asked - £100 and £120!! I am finding that my taste buds are changing a bit – water, Smoothies and even beer. I am also getting hiccoughs - all down to the steroids. However the good news is that after only two days medium sized “Henry” in my left armpit has reduced significantly in size – amazing. The Thalidomide, which I take in the evening, is, as predicted, giving me heavy eyelids and a general drowsy effect mainly overnight, rather than running into the day. I have my last dose of steroids on Sunday morning and we have Matthew, Charrise and the girls for lunch. Everything seems hunky dory.
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