Tuesday, 31 August 2010

The end

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


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.

Thursday, 12 August 2010


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,

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.

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