As many of you will know, I am not having an easy time. I am not sleeping, I am in constant pain despite various palliative intervention. I had radiotherapy but apart from suffering the side-effects, I am yet to experience the reduction in pain I was promised. However, this is moreorless what the doctors predicted. I have tried various sleeping pills but the pain and coughing override each time and I find myself awake, sitting up, trying to find things to do to pass the time. I say that I take day by day but in truth, it is moment by moment because I have no idea how I will feel at any given time during the day or night.
Many of you are praying for my recovery. This is not going to happen and to be honest, I would prefer it if you were all to pray and hope for a quick end to this. I am ready for all this to end. I don’t want any more weeks or months of suffering. I don’t want to be in hospital being fed through a tube. I have lost 12 kg, I am finding it hard to even sit down as there is no cushioning. I struggle to keep food down and tend to vomit quite regularly. Hence the loss of weight and the doctors’ suggestion that I be tube fed but with what quality of life will I be left?
My voice is never going to return. The ENT department says that the paralysis is too far gone for them to do any further operations. Because the vocal cords are so far apart, they are not protecting my airway and I risk aspirating when eating and drinking. I had an assessment in hospital and it seems that at the moment, provided I take care, I will be okay for now.
Many people want to come and see me...please understand that I am in a lot of pain, struggle to sleep and can throw up at any moment. I am trying to fit people in but at the moment, my priority is my family.
I am fading, so will stop this blog now. Hopefully have more strength to write another one soon with more positive things to say.
Please collectively will me to my end. I have had a great life, I just want peace now.
Love you all
Goose
Tuesday 31 August 2010
Wednesday 18 August 2010
Healthy People
There was a time when I was healthy. I could eat, drink, dance, run, work 24/7 and still be full of energy and of course, pure mischief. Now, when I sit in a train, tube, bus or someone’s car, I look at healthy people and wonder why I can’t be like them? A lad carrying two tennis racquets buzzing to go thrash his opponent, women cycling in central London, fat babies wriggling, people getting out and about and walking with that strut of good health that I have not known for a few months now. I say a few months, but there have been days when I have been able to sit through an entire meal and eat it, walk without pain, and sleep almost the whole night through. Now, unfortunately, night time is just one long walk of pain but sadly, the end of gallows plank seems still too far away.
Last night, in my similar situation, I wrote a short affirmation to myself, to the people who love me and the people whom I love dearly. I affirmed that I would fight harder, that I would rise above this constant pain and nausea. The vomiting happens often enough and is almost always triggered off by anxiety or not being able to eat. It happens after a fit of coughing and can be quite unexpected. Nothing too ghastly and I am amazed at how many of my friends can cope with me doing it in front of them. It brings some stomach pain relief although I must admit that the tummy issue is doing so much better, particularly when I can remember to take my movicol in the morning. Such disgusting stuff to drink at 8am that it is no wonder I often forget.
Right now it is 01h45, I have just vomited but drank some more milk, took some more painkillers and am waiting for them to kick in for the next 4 hours if I am lucky. I was often accused of snoring...this is more of a luxury now. I would love to keep you all awake at night snoring loudly. It would mean that I am “healthy” again. I am beginning to make the error of associating health with normality. By this, I tend to see myself as abnormal now as compared to healthy people. I can’t, however, wonder which hidden illnesses people might have while they go along their daily lives and then one day like me, wham...guess what: you have xyz, and that’s not all...
I started this blog at least 3 nights ago, the 16th. It is 01h00 of the 19th and I have just had my complimentary 30 minutes’ sleep. I no longer lie there trying to fight the lack of sleep; I now just turn on the light and do something. Last night I wrote a whole lot of names on postits with the idea of continuing my labelling of my “estate”. Sounds quite silly but over the years, I have accumulated so many beautiful objets d’art and been given so many amazing gifts, I kind of want them to go to the right people. Fortunately, my family is a trusting one and are not in the least concerned about a “bamba zonke” affair when I die, that is, a “grab-all” with one member of the family hanging onto one end of a cooking spoon and another saying “I’m sure he would have wanted me to have this”. To some extent, I am going to have to leave it to the family to just decide but the major stuff has all being sorted out. The two major items I treasure are my ‘cello (Alexandre) and my piano. I have another piano in Zimbabwe which was coming to me directly from my mom but I guess she and I will have to think that one through again. My other old ‘cello which my late grandfather repaired is somewhere in South Africa and I intend leaving it with the person who has it as I had always said this would be the case. So, last night I wrote names down on postits, they all looked crowded and today, only managed to stick one label on! I deliberately tried to stay awake all day and managed, thinking I would sleep all night tonight but no such luck.
I had hoped to get the radiotherapy over and done with tomorrow but after a frustrating day of waiting, found out around 5pm that it was scheduled for Monday. I am under no illusions as to the side effects, nausea, possible more vomiting and losing my hair but I don’t care as long as I get some pain relief. The disease has spread into my bones, L3, and I think, the sacrum. Not being a medical doctor I can only relate what I think I am told. My main wish is to recover enough to make a final trip to South Africa and Zimbabwe. Thereafter, sorry folks, I want a rapid departure. I don’t want this to drag on any longer than necessary as I have very little quality of life right now. I exist, I am not living.
Many people have kindly offered to visit me and please don’t take my request for you to wait a bit, personally. I have absolutely no voice, am prone to constant coughing every time I try to speak and vomit at a moment’s notice. Not exactly how I want to be seen. I am, however, going to make more of an effort to allow family to visit as I have been protecting them too much from what is actually happening, updating them by carefully-worded texts.
All things considered, I had a fairly pleasant day. It was sad saying goodbye to Bjorn Boes a Dutch friend who was once a couchsurfer (look him up on youtube, he is quite famous). He was great at doing my shopping and helping me with daily stuff but also at staying out of my way most of the time. Once again, I realise that I need to let my family into this more...they don’t mind making the journey to come and see me and would love to help. Generally, I try to remain independent. My main concern is eating. I have to force myself to eat anything. It took me a whole hour to eat one slice of toast cut into four pieces. Sometimes I cut it into even smaller pieces. I now weigh 63kgs, my comfortable weight was always 64 but during chemo, with the steroids, I gained up to 71kgs. I am back on steroids but still no appetite, mainly lunch and evenings. Part of this is lack of exercise...a vicious circle. I cannot exercise due to back pain and breathlessness so I sit around or walk around the house to get my metabolism going but more often than not, end up coughing or doubled over the toilet bowl. I have to say, if you’ve never looked under the rim of your toilet bowl, put some gloves on, get an old toothbrush and mask and get scrubbing. You will be horrified at what is actually there. Don’t waste money on those cleverly advertised products, do it the “how clean is your house” way but have a brave stomach to hang onto.
After radiotherapy I am hoping to be moved into the local hospice for symptom control as I am sure I will need some TLC from some professionals. Thereafter, let’s hope I can reduce my pain load to enable me to make that African trip.
This is not quite the end although you might get that idea from reading this blog. I have my affirmation but also please understand that I want peace now, I want rest, I want a life that is worth living. I feel bad saying that when I know that there are people with worse illnesses than I have, who cope day by day with handicaps and other awful challenges. I have had a good life, at least I have chosen to turn the bad parts into good and celebrate the good parts even more. I am ready, and I would really like you all to start preparing yourselves too in whatever way you do best. I have a beautiful friend who says she buries her head in the sand like an ostrich when it comes to my mortality and I chuckle to myself and think, yeah well, just as well your bottom is as beautiful as your head because either way, I’m still going to have a great image of you to take away with me. I can see her blush at her desk as she reads this.
Thank you once again for reading!
Your skinny but juicy goose.
Last night, in my similar situation, I wrote a short affirmation to myself, to the people who love me and the people whom I love dearly. I affirmed that I would fight harder, that I would rise above this constant pain and nausea. The vomiting happens often enough and is almost always triggered off by anxiety or not being able to eat. It happens after a fit of coughing and can be quite unexpected. Nothing too ghastly and I am amazed at how many of my friends can cope with me doing it in front of them. It brings some stomach pain relief although I must admit that the tummy issue is doing so much better, particularly when I can remember to take my movicol in the morning. Such disgusting stuff to drink at 8am that it is no wonder I often forget.
Right now it is 01h45, I have just vomited but drank some more milk, took some more painkillers and am waiting for them to kick in for the next 4 hours if I am lucky. I was often accused of snoring...this is more of a luxury now. I would love to keep you all awake at night snoring loudly. It would mean that I am “healthy” again. I am beginning to make the error of associating health with normality. By this, I tend to see myself as abnormal now as compared to healthy people. I can’t, however, wonder which hidden illnesses people might have while they go along their daily lives and then one day like me, wham...guess what: you have xyz, and that’s not all...
I started this blog at least 3 nights ago, the 16th. It is 01h00 of the 19th and I have just had my complimentary 30 minutes’ sleep. I no longer lie there trying to fight the lack of sleep; I now just turn on the light and do something. Last night I wrote a whole lot of names on postits with the idea of continuing my labelling of my “estate”. Sounds quite silly but over the years, I have accumulated so many beautiful objets d’art and been given so many amazing gifts, I kind of want them to go to the right people. Fortunately, my family is a trusting one and are not in the least concerned about a “bamba zonke” affair when I die, that is, a “grab-all” with one member of the family hanging onto one end of a cooking spoon and another saying “I’m sure he would have wanted me to have this”. To some extent, I am going to have to leave it to the family to just decide but the major stuff has all being sorted out. The two major items I treasure are my ‘cello (Alexandre) and my piano. I have another piano in Zimbabwe which was coming to me directly from my mom but I guess she and I will have to think that one through again. My other old ‘cello which my late grandfather repaired is somewhere in South Africa and I intend leaving it with the person who has it as I had always said this would be the case. So, last night I wrote names down on postits, they all looked crowded and today, only managed to stick one label on! I deliberately tried to stay awake all day and managed, thinking I would sleep all night tonight but no such luck.
I had hoped to get the radiotherapy over and done with tomorrow but after a frustrating day of waiting, found out around 5pm that it was scheduled for Monday. I am under no illusions as to the side effects, nausea, possible more vomiting and losing my hair but I don’t care as long as I get some pain relief. The disease has spread into my bones, L3, and I think, the sacrum. Not being a medical doctor I can only relate what I think I am told. My main wish is to recover enough to make a final trip to South Africa and Zimbabwe. Thereafter, sorry folks, I want a rapid departure. I don’t want this to drag on any longer than necessary as I have very little quality of life right now. I exist, I am not living.
Many people have kindly offered to visit me and please don’t take my request for you to wait a bit, personally. I have absolutely no voice, am prone to constant coughing every time I try to speak and vomit at a moment’s notice. Not exactly how I want to be seen. I am, however, going to make more of an effort to allow family to visit as I have been protecting them too much from what is actually happening, updating them by carefully-worded texts.
All things considered, I had a fairly pleasant day. It was sad saying goodbye to Bjorn Boes a Dutch friend who was once a couchsurfer (look him up on youtube, he is quite famous). He was great at doing my shopping and helping me with daily stuff but also at staying out of my way most of the time. Once again, I realise that I need to let my family into this more...they don’t mind making the journey to come and see me and would love to help. Generally, I try to remain independent. My main concern is eating. I have to force myself to eat anything. It took me a whole hour to eat one slice of toast cut into four pieces. Sometimes I cut it into even smaller pieces. I now weigh 63kgs, my comfortable weight was always 64 but during chemo, with the steroids, I gained up to 71kgs. I am back on steroids but still no appetite, mainly lunch and evenings. Part of this is lack of exercise...a vicious circle. I cannot exercise due to back pain and breathlessness so I sit around or walk around the house to get my metabolism going but more often than not, end up coughing or doubled over the toilet bowl. I have to say, if you’ve never looked under the rim of your toilet bowl, put some gloves on, get an old toothbrush and mask and get scrubbing. You will be horrified at what is actually there. Don’t waste money on those cleverly advertised products, do it the “how clean is your house” way but have a brave stomach to hang onto.
After radiotherapy I am hoping to be moved into the local hospice for symptom control as I am sure I will need some TLC from some professionals. Thereafter, let’s hope I can reduce my pain load to enable me to make that African trip.
This is not quite the end although you might get that idea from reading this blog. I have my affirmation but also please understand that I want peace now, I want rest, I want a life that is worth living. I feel bad saying that when I know that there are people with worse illnesses than I have, who cope day by day with handicaps and other awful challenges. I have had a good life, at least I have chosen to turn the bad parts into good and celebrate the good parts even more. I am ready, and I would really like you all to start preparing yourselves too in whatever way you do best. I have a beautiful friend who says she buries her head in the sand like an ostrich when it comes to my mortality and I chuckle to myself and think, yeah well, just as well your bottom is as beautiful as your head because either way, I’m still going to have a great image of you to take away with me. I can see her blush at her desk as she reads this.
Thank you once again for reading!
Your skinny but juicy goose.
Thursday 12 August 2010
UCH
On the Saturday morning I had my first enema. I was beyond caring about dignity; I just wanted the pain to stop. I must say, the adult pampers have a certain je ne sais quoi to them and I proudly wore mine all day. It was a huge relief (in terms of cramps and pain) to finally evacuate some of the accumulated constipation. However, one was not enough and unfortunately I was not able to get another one while in hospital. I am still fighting this battle and apparently it is going to take quite a while. Sorry to have to discuss my plumbing so openly but these blogs were meant to be honest and to tell both the good and the bad.
In the ward there were a few nutters. We started off with an alcoholic who kept trying to visit us all and open the windows to escape despite his individual nurse hanging onto him. After swearing at us all (patients and staff included) and redecorating the entire bathroom in a shade darker than magnolia, he was escorted upstairs to the holding bin. The gentleman next to me was once a principle dancer for some major ballet companies, had released a best-selling single (although hearing his rendition of “Summer time” I wondered how true that might have been. The man directly opposite released copious amounts of gas which became wetter and wetter until the nursing assistants had to do the inevitable bed bath duty. Another one came in mid-night and seemed harmless. The next day, a charming and very posh and wealthy gentleman came in. One wondered why he hadn’t heard of BUPA but he was very entertaining, calling all the pretty nurses “darling” and asking for their telephone numbers (he was 86) and being so polite. A true gentleman! His daughter clearly loaded up on hot potatoes before each visit as she “oh daddied” him this and “oh how ghastly daddied” him that. Listening to the conversations of British people from all walks of life was entertaining and I could see why some of the nurses appeared to enjoy their job. The ballerina next door kept ringing his boyfriend to ask why he had left him behind in Cuba and how the hell was he supposed to get back to London on his own (the nurse eventually confiscated his mobile phone at 3am). Sleep was not possible for the three nights I was there...chatting and groaning and snoring patients, chatting nurses, endless blood pressure readings, new admissions, by Monday I was driven insane.
Had some lovely but emotional visits on Saturday. Managed to hold it together during first Tony’s then my parents’ and sister’s visit but by the time my younger bro Michael, my sister-in-law Alka, Adam, Vicki and their baby tigger others known as Daniel arrived, I was a wreck and we all kinda balled our way through the visit. There were some smiles, though, mainly from Daniel. Rob, Alex and Mark then popped in for a sedate and less tearful visit. Sunday’s visiting brought along rob and Alex with almost all of my couchsurfers followed by John and Richard.
Monday, I waited impatiently to be seen by an oncologist all day and eventually decided to discharge myself. I finally saw an oncologist at 4pm who agreed that there was no point in me sitting there doing nothing so John arranged for Richard to collect me and the doctor discharged me.
Since leaving the hospital I have been very fragile and prone to anxiety attacks, but slowly building up strength, learning to eat again and fighting the constipation battle. Visited a hospice today where I will be go for pain control. It is St. Christopher’s and appears rather nice. Most rooms are individual and it is local to my area. Starting a new pain-management regime soon and seeing a radiotherapist on Monday with the view of starting radiotherapy on the third lumber which is where the cancer is now sitting.
This blog is factual, no humour I am afraid, just a true reflection of how I am feeling right now. I need to build up my strength and above all, my confidence and morale.
Love to all,
Goose
In the ward there were a few nutters. We started off with an alcoholic who kept trying to visit us all and open the windows to escape despite his individual nurse hanging onto him. After swearing at us all (patients and staff included) and redecorating the entire bathroom in a shade darker than magnolia, he was escorted upstairs to the holding bin. The gentleman next to me was once a principle dancer for some major ballet companies, had released a best-selling single (although hearing his rendition of “Summer time” I wondered how true that might have been. The man directly opposite released copious amounts of gas which became wetter and wetter until the nursing assistants had to do the inevitable bed bath duty. Another one came in mid-night and seemed harmless. The next day, a charming and very posh and wealthy gentleman came in. One wondered why he hadn’t heard of BUPA but he was very entertaining, calling all the pretty nurses “darling” and asking for their telephone numbers (he was 86) and being so polite. A true gentleman! His daughter clearly loaded up on hot potatoes before each visit as she “oh daddied” him this and “oh how ghastly daddied” him that. Listening to the conversations of British people from all walks of life was entertaining and I could see why some of the nurses appeared to enjoy their job. The ballerina next door kept ringing his boyfriend to ask why he had left him behind in Cuba and how the hell was he supposed to get back to London on his own (the nurse eventually confiscated his mobile phone at 3am). Sleep was not possible for the three nights I was there...chatting and groaning and snoring patients, chatting nurses, endless blood pressure readings, new admissions, by Monday I was driven insane.
Had some lovely but emotional visits on Saturday. Managed to hold it together during first Tony’s then my parents’ and sister’s visit but by the time my younger bro Michael, my sister-in-law Alka, Adam, Vicki and their baby tigger others known as Daniel arrived, I was a wreck and we all kinda balled our way through the visit. There were some smiles, though, mainly from Daniel. Rob, Alex and Mark then popped in for a sedate and less tearful visit. Sunday’s visiting brought along rob and Alex with almost all of my couchsurfers followed by John and Richard.
Monday, I waited impatiently to be seen by an oncologist all day and eventually decided to discharge myself. I finally saw an oncologist at 4pm who agreed that there was no point in me sitting there doing nothing so John arranged for Richard to collect me and the doctor discharged me.
Since leaving the hospital I have been very fragile and prone to anxiety attacks, but slowly building up strength, learning to eat again and fighting the constipation battle. Visited a hospice today where I will be go for pain control. It is St. Christopher’s and appears rather nice. Most rooms are individual and it is local to my area. Starting a new pain-management regime soon and seeing a radiotherapist on Monday with the view of starting radiotherapy on the third lumber which is where the cancer is now sitting.
This blog is factual, no humour I am afraid, just a true reflection of how I am feeling right now. I need to build up my strength and above all, my confidence and morale.
Love to all,
Goose
Accident and "emergency"
This is a follow-up from the Sense of Humour blog which ended with my awful Sunday night of stomach pain.
Woke up on the Monday feeling much better, which is when I wrote that blog and still had some sense of humour. From lunchtime on Monday 26th July, I started vomiting every time I tried to eat something. This went on all afternoon and the final straw was not being able to keep down a cup of rooibos tea and two tiny pieces of dried toast. I felt absolutely awful. I could not keep any of my painkillers down so not only did I have the terrible stomach cramps, I also had back pain that was getting worse by the minute. Reduced to tears, I rang Alex and asked if he and Rob would drive me to A & E as soon as possible. They were having dinner with Lin-Pan but came over straight away and we left for Kings College Hospital, myself armed with a bucket just in case. In retrospect, we should have headed for UCH which is where all my documents reside.
Well, as expected, A & E was full of (dare I be so prejudiced) chavs who’d been smacking each other or OD-ing on various substances. The receptionist took my details and promised that I would be processed quickly. I was in a lot of pain and felt as if I would throw up any minute but nothing was coming out every time I went to the bathroom. I finally saw the pre-admission nurse who was a South African and who promised to get things moving quickly. We were sent through to the next waiting section where there was a woman in a wheel chair, doubled over, holding her guts and groaning and moaning. Eventually, a nurse told her to follow him to a cubicle and she hobbled out of her wheelchair, still bent over and followed him. Perhaps they’ve seen this woman before and know her story but for us, sitting there watching it for the first time, it was not very reassuring.
After what seemed like ages, I was finally placed in the “minors” section as there were no more beds in the "majors" section. Of course, this drops your rating in terms of urgency. A nurse (yet another South African) set up a drip but that was all he could do while I waited for a doctor. I do not exaggerate when I say that the pain was driving me insane. I could not lie, sit or stand as each was as uncomfortable as the next. Alex kept rubbing my back and Rob tried to calm me down and get things moving but it was a long wait before a doctor finally appeared to examine me. She was good, said that she was going to get me some morphine for pain relief and that was the last we saw of her! Eventually, another nurse appeared with some morphine I had to restrain myself from snatching it out of her hand and drinking it straight down. She seemed surprised at the amount I wanted (needed) and I cannot describe the sense of relief when suddenly, the agonising pain started to disappear. I was then sent for an x-ray which was done efficiently and with the least amount of discomfort until the porter wheeled me back to my cubicle. Not long after the x-ray, the pain returned as apparently, the morphine had a short life-cycle. I started pacing again, groaning, lying down, standing and sitting up, waiting to see what would happen next. My previous doctor was replaced by another one who seemed a lot more experienced and he re-examined me and mentioned that my stomach was extremely distended and that the stomach pain was due to a combination of accumulated constipation and over use of ibuprofen. He said that the blood tests and x-rays did not show anything alarming but that he would keep me in overnight and administer another and longer lasting pain killer. This took a while to arrive but once it did arrive and was administered, I relaxed and was taken to a private room where surprise: another South African nurse took care of me. It was about 2am by this time. Rob had gone home post x-ray and Alex took a taxi home. Poor guys, having to spend an entire evening with me in agony and knowing that they had work the next day...total legends they are! Once they’d got my drip working properly and turned the light out, I fell asleep almost immediately.
I woke up early in the morning with some back pain and rang for the nurse who first told me that I would have to wait until 8am to see the doctor but then she changed her mind and gave me a painkiller. Saw two excellent doctors, the first saying that I was too unwell to go home and she would have to admit me but wasn’t sure whether to admit me under oncology or not, but when the consultant came around 2 hours later, he examined me thoroughly and said that he thought I could go home but if I wanted, I could stay. I opted for home and left around noon armed with yet another huge bag of medicines. The whole ordeal took a lot out of me and to be honest, really frightened me as I began to wonder if this was how it was all going to end.
Little did I know that the same scenario would repeat itself last week Friday. Once again, I could not keep anything down. This time, I decided to take a train to UCH once I felt that I was safe to travel without throwing up all over the place. Unfortunately, the chaos was worse there than at Kings. I was in agony waiting to see the nurse first and after several people being called in before me despite me arriving there early, I demanded to be seen by a nurse. Tony arrived shortly after that. It was not long before I was seen by a doctor whom although beautiful , decided to be very thorough as she hadn’t been on the job for too long. She made me follow her butterflying fingers with my eyes among other strange tests. At one point, I started vomiting again and she rubbed my back while Tony got me some tissues. How anyone can watch someone else vomit is beyond me. She finally organised a shot of morphine and I was taken through for an x-ray. While in the x-ray room, I started shivering and shaking uncontrollably, my teeth literally knocking together. I thought that I was entering into a grand mal epileptic seizure. I felt so cold but the radiographers seemed unperturbed. By the time they let me out, I was shaking even more. It subsided and then started again; unfortunately, my doctor was not there to witness it. Tony (a medical doctor) thought it might have been my reaction to the high dose of morphine or that I went into shock. The pain returned shortly after that and my one of my oncologists arrived at that moment. Bloods were taken and the doctor agreed that I should be admitted into hospital until Monday. As you can imagine, I was not the world’s happiest chap around but if it meant getting the pain under control then I was prepared to do it.
I was wheeled into the Acute Admissions Unit ward around 7pm. Tony got me a TV card and sat with me until approximately 9pm. During this stage I had to have more bloods taken as apparently the previous ones had coagulated (?). A junior doctor fresh off the graduation podium made a determined attempt but finally gave up and looked for a friend, equally fresh, to have a go. He finally succeeded. A line was put in and I was put on a drip and told I was a “nil by mouth” patient. All drugs thereafter were administered either IV or IM.
I will admit to being a total wimp and allowing myself to get into a right state about the pain and being in hospital. I had no idea that it would be so noisy, making sleep impossible. The poor night nurses had their work cut out for them with me ringing the bell each time I felt uncomfortable or in pain. I didn’t realise, though, that they had reduced the amount of painkillers they were giving me which then explained why I was still in so much pain. However, this was a good thing because I now realise that my back pain can be controlled with less tramadol than had been prescribed. The only two remaining pain issues were the stomach and the left buttock where the pain was still intense. The butterfly doctor came upstairs and re-examined me assuring me that I would see her or one of my oncologists first thing Monday morning so that I could be released. Unfortunately, she missed the “nil by mouth” instruction so her prescription had to be changed which of course, meant that I had longer to wait for pain control. More hospital news to follow shortly.
Woke up on the Monday feeling much better, which is when I wrote that blog and still had some sense of humour. From lunchtime on Monday 26th July, I started vomiting every time I tried to eat something. This went on all afternoon and the final straw was not being able to keep down a cup of rooibos tea and two tiny pieces of dried toast. I felt absolutely awful. I could not keep any of my painkillers down so not only did I have the terrible stomach cramps, I also had back pain that was getting worse by the minute. Reduced to tears, I rang Alex and asked if he and Rob would drive me to A & E as soon as possible. They were having dinner with Lin-Pan but came over straight away and we left for Kings College Hospital, myself armed with a bucket just in case. In retrospect, we should have headed for UCH which is where all my documents reside.
Well, as expected, A & E was full of (dare I be so prejudiced) chavs who’d been smacking each other or OD-ing on various substances. The receptionist took my details and promised that I would be processed quickly. I was in a lot of pain and felt as if I would throw up any minute but nothing was coming out every time I went to the bathroom. I finally saw the pre-admission nurse who was a South African and who promised to get things moving quickly. We were sent through to the next waiting section where there was a woman in a wheel chair, doubled over, holding her guts and groaning and moaning. Eventually, a nurse told her to follow him to a cubicle and she hobbled out of her wheelchair, still bent over and followed him. Perhaps they’ve seen this woman before and know her story but for us, sitting there watching it for the first time, it was not very reassuring.
After what seemed like ages, I was finally placed in the “minors” section as there were no more beds in the "majors" section. Of course, this drops your rating in terms of urgency. A nurse (yet another South African) set up a drip but that was all he could do while I waited for a doctor. I do not exaggerate when I say that the pain was driving me insane. I could not lie, sit or stand as each was as uncomfortable as the next. Alex kept rubbing my back and Rob tried to calm me down and get things moving but it was a long wait before a doctor finally appeared to examine me. She was good, said that she was going to get me some morphine for pain relief and that was the last we saw of her! Eventually, another nurse appeared with some morphine I had to restrain myself from snatching it out of her hand and drinking it straight down. She seemed surprised at the amount I wanted (needed) and I cannot describe the sense of relief when suddenly, the agonising pain started to disappear. I was then sent for an x-ray which was done efficiently and with the least amount of discomfort until the porter wheeled me back to my cubicle. Not long after the x-ray, the pain returned as apparently, the morphine had a short life-cycle. I started pacing again, groaning, lying down, standing and sitting up, waiting to see what would happen next. My previous doctor was replaced by another one who seemed a lot more experienced and he re-examined me and mentioned that my stomach was extremely distended and that the stomach pain was due to a combination of accumulated constipation and over use of ibuprofen. He said that the blood tests and x-rays did not show anything alarming but that he would keep me in overnight and administer another and longer lasting pain killer. This took a while to arrive but once it did arrive and was administered, I relaxed and was taken to a private room where surprise: another South African nurse took care of me. It was about 2am by this time. Rob had gone home post x-ray and Alex took a taxi home. Poor guys, having to spend an entire evening with me in agony and knowing that they had work the next day...total legends they are! Once they’d got my drip working properly and turned the light out, I fell asleep almost immediately.
I woke up early in the morning with some back pain and rang for the nurse who first told me that I would have to wait until 8am to see the doctor but then she changed her mind and gave me a painkiller. Saw two excellent doctors, the first saying that I was too unwell to go home and she would have to admit me but wasn’t sure whether to admit me under oncology or not, but when the consultant came around 2 hours later, he examined me thoroughly and said that he thought I could go home but if I wanted, I could stay. I opted for home and left around noon armed with yet another huge bag of medicines. The whole ordeal took a lot out of me and to be honest, really frightened me as I began to wonder if this was how it was all going to end.
Little did I know that the same scenario would repeat itself last week Friday. Once again, I could not keep anything down. This time, I decided to take a train to UCH once I felt that I was safe to travel without throwing up all over the place. Unfortunately, the chaos was worse there than at Kings. I was in agony waiting to see the nurse first and after several people being called in before me despite me arriving there early, I demanded to be seen by a nurse. Tony arrived shortly after that. It was not long before I was seen by a doctor whom although beautiful , decided to be very thorough as she hadn’t been on the job for too long. She made me follow her butterflying fingers with my eyes among other strange tests. At one point, I started vomiting again and she rubbed my back while Tony got me some tissues. How anyone can watch someone else vomit is beyond me. She finally organised a shot of morphine and I was taken through for an x-ray. While in the x-ray room, I started shivering and shaking uncontrollably, my teeth literally knocking together. I thought that I was entering into a grand mal epileptic seizure. I felt so cold but the radiographers seemed unperturbed. By the time they let me out, I was shaking even more. It subsided and then started again; unfortunately, my doctor was not there to witness it. Tony (a medical doctor) thought it might have been my reaction to the high dose of morphine or that I went into shock. The pain returned shortly after that and my one of my oncologists arrived at that moment. Bloods were taken and the doctor agreed that I should be admitted into hospital until Monday. As you can imagine, I was not the world’s happiest chap around but if it meant getting the pain under control then I was prepared to do it.
I was wheeled into the Acute Admissions Unit ward around 7pm. Tony got me a TV card and sat with me until approximately 9pm. During this stage I had to have more bloods taken as apparently the previous ones had coagulated (?). A junior doctor fresh off the graduation podium made a determined attempt but finally gave up and looked for a friend, equally fresh, to have a go. He finally succeeded. A line was put in and I was put on a drip and told I was a “nil by mouth” patient. All drugs thereafter were administered either IV or IM.
I will admit to being a total wimp and allowing myself to get into a right state about the pain and being in hospital. I had no idea that it would be so noisy, making sleep impossible. The poor night nurses had their work cut out for them with me ringing the bell each time I felt uncomfortable or in pain. I didn’t realise, though, that they had reduced the amount of painkillers they were giving me which then explained why I was still in so much pain. However, this was a good thing because I now realise that my back pain can be controlled with less tramadol than had been prescribed. The only two remaining pain issues were the stomach and the left buttock where the pain was still intense. The butterfly doctor came upstairs and re-examined me assuring me that I would see her or one of my oncologists first thing Monday morning so that I could be released. Unfortunately, she missed the “nil by mouth” instruction so her prescription had to be changed which of course, meant that I had longer to wait for pain control. More hospital news to follow shortly.
Thursday 5 August 2010
Sense of humour
Many of you have complimented me on my ability to keep my sense of humour throughout this rather awful illness. Well, last night (Sunday 25th), during one of my marathon pain sessions, I tried to find something humorous about what I was going through. I have to admit, I might have failed the challenge.
I woke up at 1.25 having had almost an hour and a half sleep, and as I wasn’t in acute pain yet, I thought this would be a quick change-over: have a quick pee, pop one mild painkiller and be asleep in no time. Except this time, the pain decided to move. It wasn’t where it should’ve been, i.e. down the left side of my body extending into my leg, oh no, it decided to centralise around my abdomen. If any of you has had a stomach ulcer, you will know about the type of pain I am describing. I warmed up my usual cup of milk, took 2 Tramacet, 1 Lansoprazole, a glug of Gaviscone and a couple of Rennies and lay there waiting for the pain to go. But this pain had decided to stay, and stay it did, right through to about 10 this morning. I had noticed, at dinner the night before, that I could barely manage a few mouthfuls of lasagne but put that down to my lack of appetite in the evenings. In retrospect, that was a warning sign of the night that was to come.
Why does pain seem so much more intense at night? Is it because you are so desperate to sleep and stress yourself out by thinking about this, or is it just that pain feeds on darkness. I found, for example, that every time I turned the light on and tried to read, it seemed better. The minute I turned the light off, I would end up groaning again and hunting for the light switch in the dark. A bit like when you’re a kid and there are monsters under your bed. Why do we torture ourselves by counting the minutes and the hours, by focussing on the pain, its intensity, its duration etc., rather than simply accepting that at some stage, it will pass? I have this fear of A & E, of being admitted to hospital via an ambulance and having doctors and nurses I don’t know prodding about, asking questions, and keeping me overnight in some dodgy hospital. On so many of my pain-filled nights, I have wondered why I don’t just call for an ambulance, then I think “yeah but what will you tell them and what will they do? Won’t they just give you the same painkillers your oncologist has given you and then keep you in for observation?” I guess that unless I try it some time, I’m never going to know.
Back to the sense of humour...well, if any of you has taken Tramadol or any codeine-based medication, you should know that constipation is one of the side effects. Sitting on the loo at around 3am willing something to come out...anything really, I wouldn’t have minded at all, I remembered some midwife telling a young mother who was giving birth to push down as if she were trying to make a pooh...I wondered, the lady was trying to give birth, the medical expert told her to try to have a pooh instead, so should I push down as if I were trying to give birth rather than have a pooh? Would the opposite work in my case? My giggle at that thought soon changed to a painful groan as I did indeed deliver triplets in one go! So much for the agiolax that a friend kindly shipped over for me from South Africa, granules that look like bisto gravy powder and which you MUST swallow with a whole glass of water (and then spend the rest of the day picking the remaining granules out of your teeth), designed to “soften your stool”...it used to work, except it always – without fail – chose to soften one’s stool in the early hours of the morning. This time, it got its timing right, but failed to deliver on the promise of a softened stool. I hate false advertising and can go quite insane with rage every time I see a “vanish” ad with its “stain-seeking intelligence” so when I’ve gone to the trouble of carefully swallowing a tablespoon of rabbit pellets, I expect a softened stool as a result or a toilet bowl full of rabbit droppings, not something only a mother elephant could love! And all this with no epidural or episiotomy? Still, that killed about an hour or so of my sleepless night and took my mind off my abdominal pain. Apologies to a friend’s mom who would definitely regard this as “toilet humour”.
Back in my loft I considered doing some self-portraits, nude, of course, to kill some time. I positioned the mirror carefully, adjusted the lighting to soften the edges when in fact, the soft and saggy bits like my belly probably required harsh lighting to firm them up a bit, and then abandoned this idea because I thought, imagine if you die tonight and you are discovered in full rigour mortis, 6B pencil clutched in your paw, gazing into a mirror with some dodgy self-portraits lying about? I thought that perhaps I could leave a note assuring police officers that no foul play had taken part and that in fact, it was just a bit of self-play, then that brought along more possible accusations and embarrassment for the family and couchsurfers who would have had to deny all knowledge of the fact that I had suddenly developed a penchant for drawing myself nude...I am not so good at faces but I thought that the art critiques would see the distorted faces in my drawings as a reflection of the pain I was suffering. And what would I call this series of drawings which would be discovered next to my body (which hopefully, will not have kept behind any agiolax in its system)? Fortunately, I did not get beyond position one and there are no nude sketches to be sold as the next best thing to Picasso.
Speaking of nudes, I once covered a friend in blue paint, pressed him onto three very large sheets of paper and sold the painting at an Art Exhibition for around R25 (he bought the painting himself!). My mother and sister-in-law are taking painting classes and this reminded me of my years of trying to become an artist, as in one who paints and draws, not tinkles on the piano and ‘cello. For years I have sketched and painted and not exhibited much of my finished works mainly because they were quite rubbish, but the other day, going through some boxes, I found an old sketch book with some rather good drawings from one of the life drawing classes I attended in London. Chatting to my sister-in-law the other day (my youngest brother’s wife), I encouraged her to take up Life Drawing but warned her of all the old women and men you get to draw...none of our models were under 90 which for beginners helped a bit as you just did a lot of shading-in because of shadows caused by overhanging flesh and folds and wrinkles. I took my hat off to these models who were prepared to take off their clothes and not just their hats, but while my Life Drawing skills improved, I decided against signing up for the following term’s classes mainly because the art teacher was too vague about technique and kept saying: “draw what you see”. That always got my goat because as a music teacher, if you told your students to “play what you hear”, you wouldn’t get very far...those pupils who heard multiple voices in their heads would be at an unfair advantage as they’d be playing quartets and complicated fugues whereas those who heard a single voice or sound, would only be able to play boring solo melodies. However, I never did adopt this approach with any of my pupils so I cannot claim to be an expert on that.
It’s when I cannot sleep that I miss my cousin William who sadly passed away four years ago. He was an insomniac and was always willing and keen to discuss family members (mainly their breasts) at 3 in the morning. I wondered which of my couchsurfers I would wake up if I really didn’t want to be alone and I must say that as they all work, none of them came up trumps. I guess I need another Antoine who liked dancing until 7 in the morning or Remi who loved telling stories until the cows came home. Bart has a loud warning system on his phone which screams “message, message!” if you text him and I didn’t want to wake him up during his night shift at work (yes, he sleeps through most of his night shift) and all my other friends who say “you should just call” had me wondering, should I? I was tempted to put it to the test and ring them up and say “hi, I know you’ve got to wake up in a few hours to go to work but I thought I’d ring you up and tell you how much pain I am in and how I am going crazy waiting for it to stop.” It’s a bit like that stupid question someone asks you: “are you sleeping?”
This blog was written around the 1st of August but you’ll need to read the next one because it is the sequel to this blog.
As always, thanks for reading
Your waddling
Goose
I woke up at 1.25 having had almost an hour and a half sleep, and as I wasn’t in acute pain yet, I thought this would be a quick change-over: have a quick pee, pop one mild painkiller and be asleep in no time. Except this time, the pain decided to move. It wasn’t where it should’ve been, i.e. down the left side of my body extending into my leg, oh no, it decided to centralise around my abdomen. If any of you has had a stomach ulcer, you will know about the type of pain I am describing. I warmed up my usual cup of milk, took 2 Tramacet, 1 Lansoprazole, a glug of Gaviscone and a couple of Rennies and lay there waiting for the pain to go. But this pain had decided to stay, and stay it did, right through to about 10 this morning. I had noticed, at dinner the night before, that I could barely manage a few mouthfuls of lasagne but put that down to my lack of appetite in the evenings. In retrospect, that was a warning sign of the night that was to come.
Why does pain seem so much more intense at night? Is it because you are so desperate to sleep and stress yourself out by thinking about this, or is it just that pain feeds on darkness. I found, for example, that every time I turned the light on and tried to read, it seemed better. The minute I turned the light off, I would end up groaning again and hunting for the light switch in the dark. A bit like when you’re a kid and there are monsters under your bed. Why do we torture ourselves by counting the minutes and the hours, by focussing on the pain, its intensity, its duration etc., rather than simply accepting that at some stage, it will pass? I have this fear of A & E, of being admitted to hospital via an ambulance and having doctors and nurses I don’t know prodding about, asking questions, and keeping me overnight in some dodgy hospital. On so many of my pain-filled nights, I have wondered why I don’t just call for an ambulance, then I think “yeah but what will you tell them and what will they do? Won’t they just give you the same painkillers your oncologist has given you and then keep you in for observation?” I guess that unless I try it some time, I’m never going to know.
Back to the sense of humour...well, if any of you has taken Tramadol or any codeine-based medication, you should know that constipation is one of the side effects. Sitting on the loo at around 3am willing something to come out...anything really, I wouldn’t have minded at all, I remembered some midwife telling a young mother who was giving birth to push down as if she were trying to make a pooh...I wondered, the lady was trying to give birth, the medical expert told her to try to have a pooh instead, so should I push down as if I were trying to give birth rather than have a pooh? Would the opposite work in my case? My giggle at that thought soon changed to a painful groan as I did indeed deliver triplets in one go! So much for the agiolax that a friend kindly shipped over for me from South Africa, granules that look like bisto gravy powder and which you MUST swallow with a whole glass of water (and then spend the rest of the day picking the remaining granules out of your teeth), designed to “soften your stool”...it used to work, except it always – without fail – chose to soften one’s stool in the early hours of the morning. This time, it got its timing right, but failed to deliver on the promise of a softened stool. I hate false advertising and can go quite insane with rage every time I see a “vanish” ad with its “stain-seeking intelligence” so when I’ve gone to the trouble of carefully swallowing a tablespoon of rabbit pellets, I expect a softened stool as a result or a toilet bowl full of rabbit droppings, not something only a mother elephant could love! And all this with no epidural or episiotomy? Still, that killed about an hour or so of my sleepless night and took my mind off my abdominal pain. Apologies to a friend’s mom who would definitely regard this as “toilet humour”.
Back in my loft I considered doing some self-portraits, nude, of course, to kill some time. I positioned the mirror carefully, adjusted the lighting to soften the edges when in fact, the soft and saggy bits like my belly probably required harsh lighting to firm them up a bit, and then abandoned this idea because I thought, imagine if you die tonight and you are discovered in full rigour mortis, 6B pencil clutched in your paw, gazing into a mirror with some dodgy self-portraits lying about? I thought that perhaps I could leave a note assuring police officers that no foul play had taken part and that in fact, it was just a bit of self-play, then that brought along more possible accusations and embarrassment for the family and couchsurfers who would have had to deny all knowledge of the fact that I had suddenly developed a penchant for drawing myself nude...I am not so good at faces but I thought that the art critiques would see the distorted faces in my drawings as a reflection of the pain I was suffering. And what would I call this series of drawings which would be discovered next to my body (which hopefully, will not have kept behind any agiolax in its system)? Fortunately, I did not get beyond position one and there are no nude sketches to be sold as the next best thing to Picasso.
Speaking of nudes, I once covered a friend in blue paint, pressed him onto three very large sheets of paper and sold the painting at an Art Exhibition for around R25 (he bought the painting himself!). My mother and sister-in-law are taking painting classes and this reminded me of my years of trying to become an artist, as in one who paints and draws, not tinkles on the piano and ‘cello. For years I have sketched and painted and not exhibited much of my finished works mainly because they were quite rubbish, but the other day, going through some boxes, I found an old sketch book with some rather good drawings from one of the life drawing classes I attended in London. Chatting to my sister-in-law the other day (my youngest brother’s wife), I encouraged her to take up Life Drawing but warned her of all the old women and men you get to draw...none of our models were under 90 which for beginners helped a bit as you just did a lot of shading-in because of shadows caused by overhanging flesh and folds and wrinkles. I took my hat off to these models who were prepared to take off their clothes and not just their hats, but while my Life Drawing skills improved, I decided against signing up for the following term’s classes mainly because the art teacher was too vague about technique and kept saying: “draw what you see”. That always got my goat because as a music teacher, if you told your students to “play what you hear”, you wouldn’t get very far...those pupils who heard multiple voices in their heads would be at an unfair advantage as they’d be playing quartets and complicated fugues whereas those who heard a single voice or sound, would only be able to play boring solo melodies. However, I never did adopt this approach with any of my pupils so I cannot claim to be an expert on that.
It’s when I cannot sleep that I miss my cousin William who sadly passed away four years ago. He was an insomniac and was always willing and keen to discuss family members (mainly their breasts) at 3 in the morning. I wondered which of my couchsurfers I would wake up if I really didn’t want to be alone and I must say that as they all work, none of them came up trumps. I guess I need another Antoine who liked dancing until 7 in the morning or Remi who loved telling stories until the cows came home. Bart has a loud warning system on his phone which screams “message, message!” if you text him and I didn’t want to wake him up during his night shift at work (yes, he sleeps through most of his night shift) and all my other friends who say “you should just call” had me wondering, should I? I was tempted to put it to the test and ring them up and say “hi, I know you’ve got to wake up in a few hours to go to work but I thought I’d ring you up and tell you how much pain I am in and how I am going crazy waiting for it to stop.” It’s a bit like that stupid question someone asks you: “are you sleeping?”
This blog was written around the 1st of August but you’ll need to read the next one because it is the sequel to this blog.
As always, thanks for reading
Your waddling
Goose
Friday 23 July 2010
Hospitals
My relationship with hospitals goes back a long way. When I was a child I suffered from some silly kidney issue where my kidneys produced too much protein. This meant that I spent a faire amount of time in hospital and as a young child my main aim was to get well enough to go home. I still recall the feeling of abandonment, of despair and of desperation each and every time family would visit and then have to leave me behind. The power that a doctor who popped in from time to time, had over whether one stayed or went home was a power which I felt was wielded too strongly against me. This was the “Coloured” and “Indian” hospital in Rhodesia (The Lady Rodwell, I think it was called). Nurses were dressed smartly with little white hats, white outfits, cloaks and badges and if you cried too much or didn’t eat your dinner, you were threatened with a visit from matron, who would descend upon you in her blue cloak and give you a telling off. Although I was so unhappy, I was well looked after, partially because several of the nurses, matrons and assistant nurses (they wore pink, I think) knew my parents and grandparents.
Today, hospitals have changed. I won’t even mention what Zimbabwe hospitals are like now, but in the UK, nurses wear overall type outfits, crocks or trainers and one cannot (at least I couldn’t) distinguish rank. This past Sunday, after telling my psychiatrist friend Tony about how much pain I had been in, he decided that we should go and see the resident oncologist at UCH. After Tony rang her, she rang me and said that I should come in straight away. When we arrived there, we were met by a rather unpolished receptionist whose catch line was and still is: “who are you?” I am sure she doesn’t realise how rude she is being and I was tempted, once I heard her say it again yesterday, to point this out. But I didn’t.
My visit to UCH for my operation started at 06h50 when Adam met me promptly in reception downstairs. We went upstairs, got the “who are you?” treatment and eventually, a nurse popped her head around the door and said she was making my bed. After a fair amount of time, Adam wondered if she was literally making it from scratch using steel (you can’t take these engineers anywhere). Once inside the bed area, I was handed one of those embarrassing hospital gowns and a pair of paper underwear, most certainly not Calvin Klein’s brand either. I was also promised a pair of DVT stockings which I had to wear throughout my visit and a pair of non-slip slippers...you could easily do a pirouette in a pair of those but as my bottom was exposed in paper undies, I decided not to demonstrate to Adam or the two beaten-up patients opposite me. A promising start with my throat specialist Mr. (don’t call me doctor, I’m a surgeon) Vaz, and being told I was no. 2 on the list, I thought yay, Ads can escort me to the theatre before having to go to work. However, this was not to be because by 08h40 I had clearly been moved well down the list. By 11h00 I was in agony with pain all down my left side (it has spread into my left thigh and buttock) and asked the nurse who was looking after me if I could take something for it. He said that unless I was cannulised there was no way but then another nurse in blue overalls arrived and said that I could take two tramadol with a little sip of water.
Unfortunately, the tramadol did not kick in by the time I was finally walked to theatre so I was hobbling along and just desperate to get knocked out by the anaesthetist. A nice surprise to see my sister Heather and my niece Fredalyne sitting in reception. They thought I had already been operated on but alas and alack, I was on my way. They were invited along for the walk, 14th floor to 2nd floor and were advised to go away for about 2 hours. Once in the theatre waiting bay, I was sat in front of a TV with as poor a reception as received Nick Clegg at a recent Royal do. All of us with our gowns, stockings and a few exceptions to the non-slip slippers, trying not to make eye or lower-body contact by staring at the TV screen. When I was called in, it all happened very quickly. After trying to anaesthetise me, the anaesthetist had to put a local anaesthetic into my cannula because of the pain that the anaesthetic was causing. Thankfully, he didn’t make me count down and I cannot recall anything other than waking up in the recovery room, not a pleasant place to be (although one should be grateful to actually end up in the recovery room rather than the morgue!). I was wheeled back to my ward where my sister, niece and Tony were waiting. I was still in great pain as the tramadol hadn’t seemed to kick in. I was also drowsy so my visitors didn’t stay long. Heather bought me some grapes at my request and the nurse told me that unless I ate most of them and some dinner later on, I would NOT be allowed out that night. I heard the guy opposite me being offered a snack box so I asked for one too. It had cheese and crackers, an apple and a packet of crisps. I managed the cheese and crackers and ate most of the grapes. Mr. Vas popped in to see how my voice was and it was stronger but unless it improves in the next few days, I doubt that I would call the operation much of a success. I am still dehydrated and need some strepsils so things might still improve. I know, however, that singing is out of the question. The doctor had said that he might need to operate twice and I have a review with him in 3 to 4 weeks’ time. Having eaten my hospital dinner which comprised lasagne, smash and boil the eff out of broccoli, I was allowed to go home with Tony at 7. Pharmacy, as usual, was late in dispensing drugs.
It was great receiving a huge number of texts, emails and facebook messages wishing me a speedy recovery, including one from someone with whom I haven’t connected in about 17 years. It is now 05h13 and I have done my usual cup of hot milk thing when I wake up in the middle of the night and now I am ready to go back to sleep. Today, Reinhardt and Rob have organised some renovations to my loft room and I am very excited to see what the extra space is going to offer. Next on the list is the bathroom. I cannot wait to have a decent bathroom, particularly one with a shower that allows you to regulate the water temperature!
Thank you all, once again, for your amazing love and support. Without you, I could not do any of this at all.
Your honking but not-yet-speaking
Goose
Today, hospitals have changed. I won’t even mention what Zimbabwe hospitals are like now, but in the UK, nurses wear overall type outfits, crocks or trainers and one cannot (at least I couldn’t) distinguish rank. This past Sunday, after telling my psychiatrist friend Tony about how much pain I had been in, he decided that we should go and see the resident oncologist at UCH. After Tony rang her, she rang me and said that I should come in straight away. When we arrived there, we were met by a rather unpolished receptionist whose catch line was and still is: “who are you?” I am sure she doesn’t realise how rude she is being and I was tempted, once I heard her say it again yesterday, to point this out. But I didn’t.
My visit to UCH for my operation started at 06h50 when Adam met me promptly in reception downstairs. We went upstairs, got the “who are you?” treatment and eventually, a nurse popped her head around the door and said she was making my bed. After a fair amount of time, Adam wondered if she was literally making it from scratch using steel (you can’t take these engineers anywhere). Once inside the bed area, I was handed one of those embarrassing hospital gowns and a pair of paper underwear, most certainly not Calvin Klein’s brand either. I was also promised a pair of DVT stockings which I had to wear throughout my visit and a pair of non-slip slippers...you could easily do a pirouette in a pair of those but as my bottom was exposed in paper undies, I decided not to demonstrate to Adam or the two beaten-up patients opposite me. A promising start with my throat specialist Mr. (don’t call me doctor, I’m a surgeon) Vaz, and being told I was no. 2 on the list, I thought yay, Ads can escort me to the theatre before having to go to work. However, this was not to be because by 08h40 I had clearly been moved well down the list. By 11h00 I was in agony with pain all down my left side (it has spread into my left thigh and buttock) and asked the nurse who was looking after me if I could take something for it. He said that unless I was cannulised there was no way but then another nurse in blue overalls arrived and said that I could take two tramadol with a little sip of water.
Unfortunately, the tramadol did not kick in by the time I was finally walked to theatre so I was hobbling along and just desperate to get knocked out by the anaesthetist. A nice surprise to see my sister Heather and my niece Fredalyne sitting in reception. They thought I had already been operated on but alas and alack, I was on my way. They were invited along for the walk, 14th floor to 2nd floor and were advised to go away for about 2 hours. Once in the theatre waiting bay, I was sat in front of a TV with as poor a reception as received Nick Clegg at a recent Royal do. All of us with our gowns, stockings and a few exceptions to the non-slip slippers, trying not to make eye or lower-body contact by staring at the TV screen. When I was called in, it all happened very quickly. After trying to anaesthetise me, the anaesthetist had to put a local anaesthetic into my cannula because of the pain that the anaesthetic was causing. Thankfully, he didn’t make me count down and I cannot recall anything other than waking up in the recovery room, not a pleasant place to be (although one should be grateful to actually end up in the recovery room rather than the morgue!). I was wheeled back to my ward where my sister, niece and Tony were waiting. I was still in great pain as the tramadol hadn’t seemed to kick in. I was also drowsy so my visitors didn’t stay long. Heather bought me some grapes at my request and the nurse told me that unless I ate most of them and some dinner later on, I would NOT be allowed out that night. I heard the guy opposite me being offered a snack box so I asked for one too. It had cheese and crackers, an apple and a packet of crisps. I managed the cheese and crackers and ate most of the grapes. Mr. Vas popped in to see how my voice was and it was stronger but unless it improves in the next few days, I doubt that I would call the operation much of a success. I am still dehydrated and need some strepsils so things might still improve. I know, however, that singing is out of the question. The doctor had said that he might need to operate twice and I have a review with him in 3 to 4 weeks’ time. Having eaten my hospital dinner which comprised lasagne, smash and boil the eff out of broccoli, I was allowed to go home with Tony at 7. Pharmacy, as usual, was late in dispensing drugs.
It was great receiving a huge number of texts, emails and facebook messages wishing me a speedy recovery, including one from someone with whom I haven’t connected in about 17 years. It is now 05h13 and I have done my usual cup of hot milk thing when I wake up in the middle of the night and now I am ready to go back to sleep. Today, Reinhardt and Rob have organised some renovations to my loft room and I am very excited to see what the extra space is going to offer. Next on the list is the bathroom. I cannot wait to have a decent bathroom, particularly one with a shower that allows you to regulate the water temperature!
Thank you all, once again, for your amazing love and support. Without you, I could not do any of this at all.
Your honking but not-yet-speaking
Goose
Thursday 15 July 2010
Mind over matter
A very talented musician, intelligent and wise friend (Errol) said to me, over breakfast or dinner in France, “you have a strong mind and it is your mind that is going to get you through this challenge.” He pointed out that I have a rational mind and that while I think things through and like things “ordered”, sometimes I might need to just allow nature to take its course and not be disappointed when I cannot find an explanation for why things like pain persist. In a nutshell, he was speaking about mind over matter and the power of positive thought. This conversation came about while discussing the severe pain I have been experiencing of late, mainly lower back and kidney pain on the left side of my body. I was saying that while I can continue to fill myself with various painkillers of different strengths, I wanted to know what is causing this pain in order to treat the cause, not the symptoms. Errol’s wife Sue (ex-prima ballerina, excellent cook, baker and loving friend), a pharmacist friend Pam (brilliant song-writer and party-animal of note), and a doctor friend Robert (gentle, caring and very good at logical diagnoses), all worked together during my week in France to ease my discomfort and to help eliminate the pain that sometimes had me turning in circles, mainly in the middle of the night.
Back in England, another close friend asked me why I don’t call someone or wake someone up when I am in such pain and I explained that firstly, as there is nothing that anyone can do to help stop the pain it is simply distressing for this person to have to observe someone you care about writhing in agony and feeling absolutely helpless, and secondly, I do not want anyone to see me in such pain because I rotate my body and move about in such undignified positions in a desperate attempt to gain a modicum of comfort. My GP, pharmacist and advice from friends, have all helped me to manage my pain more effectively and I am pleased to note that I now tend to wake up around 5am and not 3am in pain. I have also decided to seek alternative non-drug pain control in order to avoid feeling like a total zombie all day long. Afternoon naps are taking the form of a coma which leaves me feeling much worse than if I hadn’t had the nap in the first place. Mild exercise is definitely on the cards and lots of vitamins and energy-boosting foods too. By focusing my mind on pain relief, I will pull through this part of my challenge.
Anyway, this blog is not meant to be about pain or trials and tribulations. It is about encounters. As those of you who read my last blog will know that I was in the south of France, Villeneuve-Loubet to be exact. Installed in the most charming loft which came with air-conditioning, I spent a lovely week resting, reading, eating amazing food, chatting to friends, and meeting the local villageois. Sue knows everyone in the village and I met most of her friends. There was Aida from Senegal who gave me a CD of songs written by her son and who said to Sue: “il est très beau” (yes, she had been to specsavers!), her grandson Tony who drew me a lovely picture, Sara, a young Arab girl, and many other villageois who owned businesses from restaurants to dog parlours. Unfortunately, with my husky voice and lack of energy, I was not able to talk the hind leg off a donkey as I usually do.
I was able to contact Robert, a doctor friend of mine thanks to Sue’s investigative skills and we had a lovely reunion in the village followed by a helpful visit to the local pharmacy for medicines. I also spent a day and night with Pam who introduced me to a lovely extended family, part Moroccan, to celebrate a birthday and watch the cup final. Turned out that their son Romain was at the Nice Conservatoire where I was once a student. And then, the cherry on the cake: Alistair Whitehair. I taught Ali French (International Baccalaureate) for 2 years at Whitgift school, pushed him hard in terms of grammar, vocabulary and pronunciation and he has been working in Marseilles for about a month now. Ali took the time to travel down to see me and we spent the day in Nice and the evening in Villeneuve-Loubet with Sue and Errol. Ali was the captain of my day House and as he was then, he is still someone of the highest quality and integrity. His French is excellent and it was indeed a pleasure conversing almost entirely in French with him for the whole day. All in all, my trip to Villeneuve-Loubet was awesome despite hearing some devastating news from one of my couchsurfers - Emilien - who had to return to Paris to face a family crisis. I am pleased to say that he is coping much better with this tragic event and will be returning to the couchsurfing fold in a couple of weeks’ time. Another set of bad news included the death of Angie Milligan, a dear and most caring and loving lady with a charming Irish accent, who sadly died of lung cancer. That really upset me as I was very close to the whole family. Angie always used to say “don’t put it down, put it away”. She made lovely chocolate cakes and quiches and full English breakfasts with black pudding, after Sunday mass.
Returning home was lovely. I was kidnapped within minutes of getting home by Alex who cooked me a lovely hot curry which we shared with the ever gorgeous Sarah. Back at 5A, I sat with my couchsurfers (one of whom doesn’t really appreciate that I use that that term affectionately but he’s decided that “squatter” is worse), catching up on their news. The next morning I had my pre-op assessment which involved answering a load of boring questions as well as a physical examination. For those of you who don’t know, the op will be done on the 23rd of July and I might have to stay overnight in hospital depending on my reaction to the anaesthetic. While I am hoping that the operation will be a success and give me all or most of my voice back, I am not particularly looking forward to it. It will be conducted under full anaesthetic, something that concerns me, my lungs being in their current state of disrepair. However, my friend John is an anaesthetist and is confident that all will go well.
Morse is whistling away from the living room, demanding his apple and other forms of breakfast snacks so I had best get out of bed and deal with his requests. He has sent John and Richard away to Portugal so that he and I can party the week away. Perhaps we’ll have some vodka shots to wash the apple down followed by a wild and splashing swim in his water bowl. I was impressed at how many CD covers he had managed to chew his way through yesterday...he clearly does not approve of John and Richard’s choice of music.
Until next time, start strengthening your mind. Focus on something you think you cannot do, and work towards doing it. Don’t let trivial issues get you down, use your mind and the power of positive thought to tackle the bigger issues. Love yourself and don’t wait for others to love you first. Lastly, if there is someone you really care about, spend the day thinking about them, willing them to call you. If they don’t, then just call them.
Love in abundance
Megga-goose
Back in England, another close friend asked me why I don’t call someone or wake someone up when I am in such pain and I explained that firstly, as there is nothing that anyone can do to help stop the pain it is simply distressing for this person to have to observe someone you care about writhing in agony and feeling absolutely helpless, and secondly, I do not want anyone to see me in such pain because I rotate my body and move about in such undignified positions in a desperate attempt to gain a modicum of comfort. My GP, pharmacist and advice from friends, have all helped me to manage my pain more effectively and I am pleased to note that I now tend to wake up around 5am and not 3am in pain. I have also decided to seek alternative non-drug pain control in order to avoid feeling like a total zombie all day long. Afternoon naps are taking the form of a coma which leaves me feeling much worse than if I hadn’t had the nap in the first place. Mild exercise is definitely on the cards and lots of vitamins and energy-boosting foods too. By focusing my mind on pain relief, I will pull through this part of my challenge.
Anyway, this blog is not meant to be about pain or trials and tribulations. It is about encounters. As those of you who read my last blog will know that I was in the south of France, Villeneuve-Loubet to be exact. Installed in the most charming loft which came with air-conditioning, I spent a lovely week resting, reading, eating amazing food, chatting to friends, and meeting the local villageois. Sue knows everyone in the village and I met most of her friends. There was Aida from Senegal who gave me a CD of songs written by her son and who said to Sue: “il est très beau” (yes, she had been to specsavers!), her grandson Tony who drew me a lovely picture, Sara, a young Arab girl, and many other villageois who owned businesses from restaurants to dog parlours. Unfortunately, with my husky voice and lack of energy, I was not able to talk the hind leg off a donkey as I usually do.
I was able to contact Robert, a doctor friend of mine thanks to Sue’s investigative skills and we had a lovely reunion in the village followed by a helpful visit to the local pharmacy for medicines. I also spent a day and night with Pam who introduced me to a lovely extended family, part Moroccan, to celebrate a birthday and watch the cup final. Turned out that their son Romain was at the Nice Conservatoire where I was once a student. And then, the cherry on the cake: Alistair Whitehair. I taught Ali French (International Baccalaureate) for 2 years at Whitgift school, pushed him hard in terms of grammar, vocabulary and pronunciation and he has been working in Marseilles for about a month now. Ali took the time to travel down to see me and we spent the day in Nice and the evening in Villeneuve-Loubet with Sue and Errol. Ali was the captain of my day House and as he was then, he is still someone of the highest quality and integrity. His French is excellent and it was indeed a pleasure conversing almost entirely in French with him for the whole day. All in all, my trip to Villeneuve-Loubet was awesome despite hearing some devastating news from one of my couchsurfers - Emilien - who had to return to Paris to face a family crisis. I am pleased to say that he is coping much better with this tragic event and will be returning to the couchsurfing fold in a couple of weeks’ time. Another set of bad news included the death of Angie Milligan, a dear and most caring and loving lady with a charming Irish accent, who sadly died of lung cancer. That really upset me as I was very close to the whole family. Angie always used to say “don’t put it down, put it away”. She made lovely chocolate cakes and quiches and full English breakfasts with black pudding, after Sunday mass.
Returning home was lovely. I was kidnapped within minutes of getting home by Alex who cooked me a lovely hot curry which we shared with the ever gorgeous Sarah. Back at 5A, I sat with my couchsurfers (one of whom doesn’t really appreciate that I use that that term affectionately but he’s decided that “squatter” is worse), catching up on their news. The next morning I had my pre-op assessment which involved answering a load of boring questions as well as a physical examination. For those of you who don’t know, the op will be done on the 23rd of July and I might have to stay overnight in hospital depending on my reaction to the anaesthetic. While I am hoping that the operation will be a success and give me all or most of my voice back, I am not particularly looking forward to it. It will be conducted under full anaesthetic, something that concerns me, my lungs being in their current state of disrepair. However, my friend John is an anaesthetist and is confident that all will go well.
Morse is whistling away from the living room, demanding his apple and other forms of breakfast snacks so I had best get out of bed and deal with his requests. He has sent John and Richard away to Portugal so that he and I can party the week away. Perhaps we’ll have some vodka shots to wash the apple down followed by a wild and splashing swim in his water bowl. I was impressed at how many CD covers he had managed to chew his way through yesterday...he clearly does not approve of John and Richard’s choice of music.
Until next time, start strengthening your mind. Focus on something you think you cannot do, and work towards doing it. Don’t let trivial issues get you down, use your mind and the power of positive thought to tackle the bigger issues. Love yourself and don’t wait for others to love you first. Lastly, if there is someone you really care about, spend the day thinking about them, willing them to call you. If they don’t, then just call them.
Love in abundance
Megga-goose
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