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

Goose

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

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

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

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

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

Tuesday 6 July 2010

Poland

I am writing from a lovely loft room in Villeneuve-Loubet (France), home to my friends Errol and Sue. Many years ago when I was a student at the Conservatoire in Nice, Errol and Sue were my refuge. I was always able to escape the boredom of public holidays by popping in to see them. But this blog is about Poland, not France, so I will speak about the loft room and this trip in another blog.

Last weekend I flew to Katowice in Poland to stay with Bart (one of my wonderful couchsurfers) and his family. Until I met Bart, for me, Poland was “that place” where Auschwitz was situated and whence came all our plumbers in London. The few Polish people I had met in London hadn’t seemed particularly friendly and I must admit that I hadn’t formed a positive opinion about Polish people based on my limited experience. However, in retrospect, this opinion was not justified as I recall having spontaneous drinks with a group of Poles who were renting rooms in the same house as my German friend Patrik in Brighton and they were extremely friendly. To be honest, I think that I allowed one or two minor encounters cloud my opinion, something we tend to do too often in life: judge an entire race by one or two negative representatives.

Before leaving for Poland, I asked Bart to inform his mother that I was not a big eater. I did this because during a visit to Prague with Vojtech, I was faced with table after table of wonderful but enormous servings of food. Since stopping the steroids, my appetite has not been huge and I was worried about causing offense. Well, Bart’s wonderful mother was not to be deterred. She produced amazing food and wanted to feed me from the moment I arrived. What a lovely family: the expression “the apple doesn’t fall far from the tree” is so true. In London, Bart has been very caring and generous and has also shared his excellent sense of humour with us all. His family, from parents, sister, grandmother to aunt and uncle, showed the same high level of generosity, friendship, warmth and humour. Despite the language barrier (my “Polish in 60 minutes” didn’t work but only because I was too lazy and did 10 of the 60 minutes), we had many a laugh around the table. Bart was a great interpreter but was reluctant to interpret some of my comments about him to his family. I would have loved to have been able to recount anecdotes about Bart’s life in London, spin a yarn or two about him, and embarrass him a little, but alas, 10 minutes of “Polish in 60 minutes” only allowed me to greet and to say thank you! Bart’s grandmother was very much like my mom’s mother. I have been so lucky having known three awesome grandparents. I am always taken aback by people who have not had good experiences with their grandparents as they could and should play such a vital role in a child’s life. I tried to persuade Bart’s gran to come back to London with us and she jokingly agreed as long as we bought her a ticket. The whole weekend, I was spoiled rotten by Bart and his family and must say that the level of hospitality and friendliness was simply wonderful.

In terms of visiting Poland, one of my main interests lay in the second World War and the “final solution” regarding the Jews. On Saturday, Bart, his sister and I visited Krakow. After wondering around the town square by foot and visiting the market, we took one of the electric city tour cars. Both Bart and I got a little bored about the number of Churches and their history (Poland was a very religious country). From my point of view, it wasn’t that I was against all the Churches, it was just that there were so many and I was impatient to get to the Jewish quarter and to also see the remains of the ghetto that was erected to contain the Jewish people. All in all, the tour was very interesting and the story about the dragon (not to mention the statue of the dragon spitting fire), was endearing. After a late lunch we went to visit a salt mine. I recall threatening my students with banishment to the salt mines of Siberia but I had never visited a salt mine before. When we descended the 800+ stairs to the bottom of the mine, our guide was brilliant despite the rude tourists who spoke over his voice. One particularly funny comment he made was: “At this salt mine you can lick anything...EXCEPT the guide!” It was, once again, an interesting visit.

We arrived back at Bart’s home to find a barbecue in process and some of his relatives visiting. They were keen to know more about me and through Bart’s skilled intrepreting, we had a great evening of chatting, laughing and eating. We were viciously attacked by mosquitoes before moving indoors and I had a funny lump on my head where one mosquito had a go (my hair is extremely short as Adam, my barber, was not concentrating...he had also created two interesting – but very different - hair sculptures above each of Bart’s ears).

On Sunday, Bart and I woke up early for our visit to Auschwitz. The visit lasted approximately 3 hours and was everything I expected it to be. While waiting for the visit to start, I asked myself why I was there...I was thinking in terms of how people “rubber neck” when driving past a gruesome car accident on the highway. Why do we want to see the misfortunes of other people? Are we all inherent voyeurs, and was I in Auschwitz as a voyeur, someone who wanted to look in from the outside and in some way, both bask and squirm in the misfortune of millions of Jews? The guide’s opening remark put my visit into perspective. He said: “Auschwitz is NOT a tourist attraction; it is a reminder of what can and did happen. It was about one simple objective: the extermination of the Jewish race.” The guide reminded us, throughout the visit, about how cold-blooded and simplistic this objective remained. I kept my emotions in check despite the obvious evidence of the suffering and humiliation that the prisoners, both Jewish and non-Jewish, suffered. I thought about current attitudes towards the Roma, in England and elsewhere in Europe, about how we regard them with suspicion, and how the Germans extinguished so many of them based on the exact same suspicions and disdain we sometimes show for their race. It made me reflect on how dangerous racial prejudice can be in the hands of someone with power (and I am not speaking about colour, but about race and ethnicity). In fact, any prejudice for that matter. I used to tell potential couchsurfers (and in fact my students) that they had to leave all their prejudices outside the door to my house or classroom, that tolerance was my core value, and seeing the results of incomprehensibly destructive prejudice was a stark reminder to myself of the need to guard against the ever-present temptation to show prejudice, no matter how mild. We ended our tour with a visit to Birkinau, and to be honest, the open space, the barbed wire fencing and the wooden sheds which housed the prisoners, had more of an impact on me than Auschwitz in terms of being able to picture the level of degradation the Jews and other “unwanted” races had to endure. Seeing the offloading ramp/area where people were divided into groups, and seeing the communal toilets and the incinerators which had been destroyed by the Germans when they realised their time was up, brought it all home more realistically.
We returned to Bart’s home in time for a lovely lunch and sad drive to the airport to say goodbye and to fly back to London. All in all, an excellent trip, my first to Poland, and a truly great experience.

Health-wise, it has been a bit of a struggle of late. Coughing has been debilitating and back pain has been, at times, excruciating. It is all on the left hand side of my body. I saw my GP who has prescribed a stronger painkiller but we really need to get to the cause of the pain...scans a couple of months ago showed my spine and liver etc clear of cancer but I think that further investigation is needed as there has to be a reason for such pain to be present. As always, I am well looked after by friends and family, and my couchsurfers (read ‘wonderful friends’) are as attentive as ever. Good news is that I have a date for surgery on my vocal cords: Friday 23rd July. I have a pre-hospital assessment on the 14th. I cannot wait to see if the op is successful as I am desperate to get my some or all of my voice back. It has been approximately 10 weeks now that I haven’t been able to speak properly and it is tiring, frustrating and getting in the way of my desire to coach as much as possible.

Some days I feel strong and believe I can last “forever”, and others, particularly when I am writhing in agony because painkillers haven’t kicked in yet, I wish it were all over sooner rather than later. I still have plans to travel more and have no intention of leaving this earth until I have had a good trip to Zimbabwe and South Africa, as well as NYC and other places. Right now, I can look forward to a relaxing week in the South of France, being spoiled by Sue and Errol.

Whatever it is that you are doing, do it with love, passion and enjoyment, or don’t do it! As a coach, I know that even if you think you hate your job or your life, upon closer inspection, you will find that you only hate certain aspects of your job or life and those aspects can be changed or improved. Often, it is a matter of changing your perception and attitude before further positive change can take place and you can start loving what you do. It is not where you do something that matters, it is what you do and how you do it that matters. So fill your lives with love, passion and laughter and if you don’t know how to do it, find someone to teach you how. I recently said goodbye to Remi, a 21yr old French couchsurfer whose level of self-confidence and enthusiasm for life was a huge lesson to me. I learned to stop moaning about unimportant things, or at the very least, to look at them differently. Remi broke every rule within my “book of rules” yet I learned so much from him, not all good - in which case I was able to become the teacher - and the main thing I learned, was to seize the moment, to open up my mind and to live. In his last days in London, Remi told me: “I will not say no to anything that my friends or people suggest to me in London”. Alarm bells rang in my head and I tried to lecture him on the inherent dangers...blah blah blah...Well, of course he ignored my lecutring, but he also left London safe and sound, having had the most amazing experiences, all of which he recounted to me, often between midnight and 4 in the morning, and I listened without prejudice, just neutral interest and a certain amount of envy. All the worrying about his safety and possible disastrous outcomes was unnecessary.

So, once again, I encourage us all to live life with passion and enjoyment...we don’t know, each and every one of us (not only those of us who have been given a time-limit), when we will “pop our clogs” so why waste time being miserable?

Until the next time

Much love from

Megga-goose

Wednesday 30 June 2010

Ear, nose and throat

As most of you know, I lost my voice over 2 months ago. I kept telling myself that it would come back eventually and indeed, some days it seemed stronger than others. However, more often than not, it remained not more than a husky whisper. This has had a direct impact on my coaching...how ironic that just when I have access to clients, I don’t have a voice. I managed to do some coaching sessions but I found it rather difficult to inspire confidence in my clients when each time they saw me, I still had no voice and didn’t seem to have a medical reason for it (I haven’t shared my illness with my clients, for obvious reasons).

Today, I saw an ENT specialist at UCL. I was seen promptly at 14h40 (as per my appointment time) by a very friendly and extremely good doctor. Despite my apprehension of having a tube inserted through my nose into my throat, he put me at ease and I decided to trust him. After a quick nasal spray, he inserted his camera and all I felt was a tickling sensation and a slight pushing feeling. The trainee nurse got to have a look up my nose/down my throat too (why would you want to do that?). The doctor sang a note and asked me to imitate him. He was surprised to discover that it was my right vocal chord that didn’t move at all with my left vocal chord wobbling a bit and trying to move towards the one on the right. Both the ENT specialist and the oncologist had thought I had left laryngeal nerve palsy. The plan is now to operate as soon as possible, with an overnight stay in hospital. We agreed to try to get this done mid-July when I return from France, providing I can get a place at UCL. If the doctor I saw today cannot fit me into his own surgery schedule, I will have one of his colleagues perform the operation. He hopes to restore most if not all of my voice strength. This is good news as I really did not wish to remain voiceless for the remainder of my life!

This coming weekend I will realise a long-term wish: I am visiting Poland and will visit Auswitch. I have always been interested in German and European history and this will give me a closer look at that horrific example of human behaviour. My tour guide and translator will be Bart, one of my wonderful couchsurfers. I will stay with him at his parents’ home, my only concern being made to eat a lot. When I visited Vojtech’s family in Prague, the table was constantly covered in food and being a small eater but not wanting to cause offense, I have asked Bart to forewarn his mother that I won’t be eating large amounts! All in all, it is going to be a great weekend.

Sitting on the lawn in Berkley Square having lunch today with Adam, I mentioned to him that I need to set myself some objectives as I feel that I am becoming a little complacent, ill or not! I find that the day flies by and at the end of it, I haven’t achieved much. While I acknowledge my need to rest, I equally acknowledge my need to remain focussed and to set and to achieve objectives. That is the core of coaching, helping clients to set goals and to achieve them effectively. I have many things that I would like to achieve and do not need to sit on my laurels doing nothing about it. Getting my voice back will be a huge source of motivation. Until then, I am looking forward to a week in the south of France. I still have further travel plans and am particularly keen to spend some time in Paris as I have not seen my Parisian friends in absolute ages, years in fact!

Until the next blog, if you have a voice, sing, sing well, sing badly, who cares, just sing out loud, in the shower, in the car, in your lover’s ear when he or she is trying to sleep, just sing, tune in to Magic FM and croon away to love songs, sing with the birds first thing in the morning...as the coke advert used to go: “I’d like to teach the world to sing, in perfect harmony...”

Much love

Husky Goose

Sunday 20 June 2010

Smile

Smile, though your heart is breaking
Smile, even though it's aching

When there are clouds in the sky, you'll get by
If you smile through your pain and sorrow,
Smile and maybe tomorrow,
You'll find the sun come shining through for you

Light up your face with gladness
Hide every trace of sadness
Although tears maybe ever so near
That's the time you must keep on trying
Smile, what's the use in crying
You'll find that life is still worthwhile
If you'll just smile..

That's the time you must keep on trying
Smile what's the use in crying
You'll find that life is still worthwhile
If you'll just smile.

I was driving to Brighton today to collect Rob and Alex after their London to Brighton bike ride in which they participated to raise money for cancer awareness (these guys are just amazing). The radio was playing father’s day requests and someone requested the song Smile. I hadn’t heard this song for ages and I croaked along in my non-existent voice and was reminded of the need to smile. Sometimes, it’s hard to find something to smile about, or so we tell ourselves, but if we’re really honest, there are so many good memories within us that we have no excuse for not finding a reason to smile. In Africa, many black children live in abject poverty, have lost parents to HIV/AIDS, have been physically, sexually and mentally abused and yet what happens every time there is a documentary on these kids? We see smiles, smiles and more smiles. If you have never seen a fat black baby smile then go out and find one today. I know that sounds racist and generalised, but while I know that there are children of all nationalities and shades of colour who do smile, I am always struck by the African child’s ability to smile through his or her tears. Children don’t need Madonna to adopt them and surround them by multimillion dollar gadgets and media, they just need a few plastic bags to make a soccer ball, and someone to give them at least one meal a day in order to get them to smile. Why do we adults find it so difficult to smile more? Maybe it is because we know better, we know what a cruel world this world can be, but that’s all the more reason for us to show some teeth and smile. It always makes us and everyone else feel better. I love drawing smiley faces, known as “smileys” on every note I leave for people...one of my friends once wrote: “As Angus would say, :)”...Sometimes my smileys really get that goofy look and other times they’re less successful; but, I love drawing smileys and putting them on everything. Two of my fellow housemates have started doing them too and it is not uncommon to find a smiley post-it hidden in my pocket or hidden in my laptop when I open it. It never fails to make me smile when I receive one, particularly when they are there as a surprise.

I sat through the last of my chemotherapy treatments last week Wednesday. My chemositter was Brent, a friend from Cape Town. Like all my previous chemositters, he got to see me at my worst, hating every minute of it and just wanting to get out of there. Brent has re-named me, giving me my new Xhosa name of “Patience”! Clearly, I am lacking in that department and demonstrated it by wanting to connect my own bag of flush and de-cannulise myself as I couldn’t wait any longer for the nurse. I just wanted to get out of that hospital as quickly as possible but also had a bit of a wait for my medication to come down from pharmacy. I will go back sometime this week to say a proper thank you to the nurses who looked after me as they have been truly amazing. The side effects have been at their worst but at least it was the last treatment and it can only get better, if even only for a short while. The plan is to see the ENT specialist on the 30th about my voice (been almost two months now without a voice) and then see the oncologist on the 2nd of August for a review. Insh’Allah, I will not have to have any further treatment for at least 6 months although I think I am being rather optimistic there. I have a nebuliser now and have already had requests for it to be used as a hubbly-bubbly! The nebuliser has been helping a bit with the shortness of breath so that’s another positive thing to add. All in all, I am looking forward to no more chemo in my system. I am a completely different person when not under the side effects of chemo.

My travel plans are all coming together. I am off to Nice on the 6th of July for a week, then Germany on the 2nd of August for about a week too. New York is still being planned and there will be other short trips, depending on my health. I am still able to see one or two clients from time to time but it isn’t great as I have no voice and this influences the dynamics of our coaching sessions and is not really ideal.

Someone asked me the other day, “How do you cope being at home all day? How do you stop yourself from getting bored?” I guess that I have had to find other ways of occupying myself. I write a lot, I read, I learn languages (Polish in 60 minutes!), I make scrap or “memory” books filled with photos and stories and other “stuff”, I take care of the house, I play piano and ‘cello (not much though), I write material for coaching, visit people and receive visitors, and more importantly, I prepare for the “end” in terms of trying to get everything in place. I don’t often feel bored or depressed, I somehow manage to stay busy and occupied. Having worked and studied at the same time all my adult life, the last three years have taught me to be more resourceful with my time and to set objectives and plans for the days or weeks ahead. It is a rare privilege to be able to plan your own time without the constraints of a daily job and I am well aware of that privilege and therefore make the most of it.

So, the thought I’d like to leave with you this time is: smile more and work and stress less! Create quality time for yourself and make the most of every free moment you have.

Thank you for reading

Much love

BoodaGoose (an adaptation of an Algerian footballer’s name) :)

Friday 11 June 2010

Light up (Run)

Snow Patrol wrote a song called Run (Light up) and while I love their version, I have to admit that I love Leona Lewis’ version more. I listen to this song over and over again and I wonder what it would sound like with my niece Adela singing it? Maybe one day, we’ll all get to find out. I love the way the words in the chorus go: “light up, light up, as if you have a choice...” On a few evenings, I have sat with a couple of friends at the piano and sung this song, me mainly singing harmony. Actually, it was with Rob a few times and then with James too. And that’s the thing, sometimes we just have to lighten up, pretend that we have a choice in the matter because I suppose in the end, we do. We might not be able to choose the end result but we can choose the way that we get there or the route we take. We can choose to travel peacefully.

I had a wonderful trip to Spain last weekend, compliments of Morse. Actually, Morse came down with a cold so he sent John and Richard to Spain as my guardians. I think Morse just fancied staying home with the gorgeous Catherine (Richard’s sister) and deliberately pulled a sickie! Bird-flu, he claimed. Anyway, my first trip to Spain and what a wonderful place to start: Barcelona. I was truly stoked by that city. From the moment we landed I just felt great. We had a lovely hotel right in the city centre. We went out for a walk in the warm air, had dinner and drank some sangria. I loved the vibe, the buildings and that was just based on the glimpse I had at night. The next day, after a huge breakfast, we visited a nice cathedral with a garden courtyard with geese inside! We then went on the city bus tour and I loved being able to sit at the top of a bus and just look, see and smell. The sun was shining and it was a glorious day by all accounts. I managed to find a couple of lovely little colourful (read orange) treats for myself, my favourite being a little coffee cup in an odd shape (I was able to find some orange sugar sachets to go with it). Yes, I am orange-crazy. Later that day, we jumped on a train to Sitges where we stayed in this really cool modern hotel. We went out for dinner and I managed to get most our bill cancelled because I told the manager that both Richard and I could make better paella than his chef! We got a complimentary cheese cake thrown in for good measure. The next day it rained most the day in Sitges so we sat around the hotel after a wet walk-about and just chatted before I took a train back to the airport to return to London. Queasy-jet managed to only leave Barcelona well after midnight, a delay of about 2 hours but as I don’t live too far from Gatwick, I got home around 2.30. So, Spain is awesome and I want to return there some time, probably to Barcelona again. Thank you once again, Morse, John and Rochard!

On Monday (7th), I had my pre-chemo oncology appointment. I saw the registrar, someone I had actually seen before for an emergency consultation. He was very thorough and has made arrangements for me to see an ENT specialist to explore the cause of my prolonged voice-loss. He has also written to my GP asking him to organise a nebuliser for me which will certainly help with my breathing. Chemo took place on Wednesday and as usual, I managed to work myself up into a knot before the day even arrived. Kerry was my volunteer chemo-sitter this time and she got there before me and witnessed the whole fire-engine saga which resulted in all our chemo treatments being delayed by an hour and a half. I had Taj as my nurse and she only had one failed attempt at cannulising me. The old veins are not coping too well but there is only one treatment left. I have to admit, I feel absolutely rotten following this treatment. I had so much luck with cycle 5 but cycle 6 has gotten off to a terrible start. I don’t need to go into the details as it is similar to before. I can only sit and wait for this final cycle to be over. The good thing is that when it gets too tough for me to handle on my own, I can almost literally hand over to someone else. It’s a bit like running a relay, when you’ve pushed yourself to the limit and you come around the corner, there is someone waiting with his/her hand stretched out and you can just pass the baton and take some time out. I have so many friends and family members willing, ready and able to take the baton from me and I am learning to pass it on, to share the pain as much as I want to share the joy and the love. Last night, after almost 3 hours of agonising pain in my back and no more strong painkillers left, I just said “I give up” and I woke up one of my couchsurfers and said, “You’ve got to take this pain from me now, I can’t any take anymore.” And, it was pretty much what happened. We dug around to find what else I could take, sorted out some more cushions and pillows, hot drink, some encouragement, and I was able to fall asleep. However, I was up early and straight off to the Pharmacy to stock up.

In life, whatever we do, whether we choose to live alone, live with someone, have boyfriends, girlfriends, get married and breed (this always makes me smile when I say this) or just get married and not breed, we must make sure that there is someone to whom we can pass the baton when we get tired or feel we need a break. This has been one of my biggest blessings in life, always having someone who will stand by me and lift the load off my shoulders. But we also have to learn how to do this, it doesn’t always come easy to say “I am weak right now, I need your strength”. I always felt better fixing other people’s problems, helping others, being the strong one and now I have had to learn to accept that the roles have reversed. But this is a nice feeling, it is nice to help and allow oneself to be helped in return.

Once again, thank you for reading.

Your Barcelona Cathedral

Goose

Monday 31 May 2010

Euphoria

It has been some days since I’ve had my feet “on the ground” so to speak. A couple of days ago I celebrated my 43rd birthday (although I have been claiming I am 34 because I’m “dyslexic”). I had my birthday lunch with Adam, something I’ve been fortunate to do for a number of years now. I then had a visit from Sue and Errol who had just flown in from Nice. We tucked into Rob’s amazing chocolate cake and caught up after so many years of not seeing each other. Then, in the evening, several friends came over to celebrate the rest of my birthday. We had a lovely time, the house was filled with beautiful and frankly awesome people until quite late, actually. As usual, I got spoilt rotten and we danced to “doo bee doo bee”. It was lovely to have some of my previous couchsurfers there as well. All in all, my house filled with beautiful, awesome and amazing people!

On Saturday, we had a family braai (BBQ) at my younger brother’s house. It was great seeing many family members in one place and once again, I sat there marvelling at the extent to which family will extend a hand of kindness, the effort my sister-in-law, sister, mother and brother had put into making the day so special for me. Talking to everyone was not easy as I had little voice and got rather breathless. I managed to sneak a quick nap next to baby Daniel until he woke up and his dummy went into over-drive. He was a huge hit with everyone at the braai. He is indeed a beautiful baby, full of smiles. It’s simple, really, happy parents equal happy babies.

As I said, I haven’t had my feet on the ground for well over a week. I seem to stumble from one loving person to another. Every day, I am blessed with some act of kindness: whether it is a cup of tea, cup of coffee or a hot chocolate made for me by one of my couchsurfers, a gift or a sneaky note of encouragement hidden somewhere in my room, visits from friends who were just “passing by”, messages, letters, texts, phone calls which I cannot answer, emails, just love, love and even more love. I feel as if I have smoked a massive spliff (which I haven’t!) and feel I should be bobbing up and down to Bob Marley’s song “one love, one heart, let’s get together and feel alright”.

I am house-sitting for Tony at the moment and loving the feeling of space which his house gives. Sitting in the conservatory part of the extended kitchen, I can see all the way up the garden, I can sit out in the sun when it puts in an appearance, I can pop into the TV room and watch 4 DVDs one after the other or spend ages watching Property Ladder or Grand Designs on Sky, or just lie on one of the sofas or the bed reading book after book. Now some of you might be thinking, what a lazy sod! I do, however, work as well. I am writing my own coaching programme for online coaching as I know that my voice is going to keep disappearing so I need to have some means of earning an income. I also work on people’s CVs and assist the odd student or two with his/her university dissertation. All in all, I am learning to relax, something which I didn’t always do. I tend to do two or three tasks at once but little by little, I am learning to just stop buzzing around, to stop feeling that I should or must do something, and to just do nothing. I get breathless quickly and have some pain in my chest when I breathe deeply so it does me good to sometimes just chill. The back pain is better controlled now that I have stopped trying to be superman and take my painkillers regularly. I am also sleeping well.

I had a fun trip to the JobCentre Plus the other day. Because they hadn’t booked me for my medical, I had to have a “let’s get you back to work” interview. Well, I turned up as instructed, sat in the waiting room and chuckled at Joe Bloggs who was saying: “I ‘aint gonna work for less than 10 quid an hour”...”But sir, you have NO qualifications and you’ve not lasted long in ANY of the jobs we’ve sent you to”...”I don’t give a monkey’s, i ‘aint working for less than 10 quid an hour”... Priceless! Anyway, my turn came and the lovely lady who was my “case worker” looked at my dossier and said: “Oh dear! My husband died of cancer...” and proceeded to spend 10 minutes telling me about her late husband’s cancer, how he died, how she missed him, etc etc. I listened patiently, whispered a word or two of encouragement and waited for us to deal with my “getting back to work” interview. She asked me what sort of job I would like to do. I said that I would like to do what I am qualified to do: coach, and to continue being self-employed. She said, “What’s your highest qualification?” I said “PhD” and she said “What’s that?” I was tempted to reply: “Pretty Huge....” but stopped myself in time. Anyway, to cut a long story short, she said that they had no intention of getting me back to work as it was clear that I was unfit for work (which is what my GP had put into writing) and that I had to have my final medical to sign me off permanently. She was very sweet, I must admit and I admire the good that they try do at the JobCentre. They don’t deserve the abuse they get from people who do not want to work. I intend, however, doing as much coaching as my health permits. I just have to notify the DWP if I earn more than £93 per week!

On Friday, I am off to Spain. Morse is taking me which means we have to find someone to look after John and Richard, making sure they’re fed and watered every day and haven’t “done poops” in their cage! I’m sure that Eliana, the Polish cleaner, will manage. Morse and I are off to Barcelona for some serious sun-tanning! Back on Monday, straight to the oncologist who will be someone I don’t know but as I am starting my final chemotherapy cycle, I don’t really care. I am having an x-ray tomorrow and will see the results on the 7th.

So, while this is a slightly random blog this time round, I am happy. I have been given enough money for my New York trip for my birthday (thank you, friends and family); I have new furry Polish slippers and a beautiful musical instrument that makes thunder, loads of chocolate and am just one spoiled child, really! I am smiling, I am at peace, and I want you all to be equally happy in your lives.

Thanks for reading

Megga-Goose

Saturday 22 May 2010

Sunshine

It has been a love-filled week but my cup runneth not over: I want more! Now, before you start thinking that I am speaking about “fleshly” love let me disappoint you and state clearly that I am speaking about the love that has flowed from friends and family in abundance this past week. I have been spoiled rotten in terms of lunches, flowers, spontaneous visits, a bag full of lemons and two bottles of honey, sneaky tarts and chocolate biscuits waiting for me in the morning, a huge box of krispy cream doughnuts (which means another sarcastic comment about weight-gain from the nurse on the 7th of June), hugs, endless texts from my mother (I complain but secretly love receiving them), loads of facebook messages from one particular friend, a beautiful house and garden to stay in for a couple of weeks, just endless expressions of love! My heart is bursting with it all and on a sunny day like today, you couldn’t feel better!

I am staying in Tony’s house, sitting in the incorporated “conservatory” part, sunshine beating on my back, listening to Classic FM, a cheeky espresso by my side, feeling full of energy (maybe the espresso was a little strong), feeling healthy, no nausea (!!), just wanting to run the London marathon (as if!). There is a French market (hon hon hon) down the road so I shall have to make a few purchases in the cheese and saucisson department and have a true Provençale meal tonight.

Last night, I had a happy dream. I dreamed that I had gone back to visit Somerset College in Somerset West, a lovely school where I was once Director of Music. In the dream, there were people who shouldn’t have been there but it was nice to see them all. The school had put on a concert under their new DOM and we were attending the concert. I remember the opening songs sung by the choir: "Bridge over Trouble Water" and then a snazzy version of “Take a chance on me”. This is where, in my dream, Clare Coughlan (who had nothing to do with Somerset College but who is a friend from way then – Zimbabwe music camp days and the International School of South Africa) and I ended up skipping down the aisle dancing to “take a chance on me” before being dragged back to our seats and being told off by her mum! A very special appearance in the dream was David Stephens an ex-pupil who died tragically several years ago. David used to love singing and was one of my favourite pupils because he would always just sing whatever I suggested and never ever complained. I also remember Tim Nel singing a solo in the dream. Tim didn’t take singing lessons with me but was a strong feature in the 160-odd sized choir and his dad made excellent wine! "Smiley" Shannon was in the soprano section too. As usual, with dreams, once you try to describe them or write about them, they start to fade (at least I find that happens with my dreams). My friends Rob and Alex featured very strongly in this dream, although as with Clare, they had nothing to do with Somerset College. I woke up this morning with Abba’s “take a chance on me” in my head...what a lovely, catchy tune! I shall have to dig out the old Abba CD and have a boogie.

So, what does one do with a lovely summer’s day, no fixed plans, a huge house and beautiful garden, and unfortunately, no voice? Invite friends over for a whispering session, or as Brandon put it so hilariously: we can just sit and stare at each other! Friends have suggested learning sign language: I assume, therefore, that you will all learn it with me because it will look silly me signing away and you staring at me blankly wondering what on earth I am saying? I should really learn to sign because my cousin’s daughter can only communicate by sign language and I always feel like I’m letting her down when I cannot speak to her. I would love to know what’s going on inside her head...but can you teach an old dog new tricks?

Back to what to do today. Well, for starters, nothing. Just sit here and follow the sun around the room like a gecko or other-type lizard. I have thousands of avant-garde films to get through, thousands of books to read, and thousands of friends and family to see. But maybe I’ll do none of the above? Maybe I’ll do something different, daring? Maybe I will head into Camden Market and taste some food? Or go to Kentish Town and play the wonderful ‘celli dating back from the 1600s or just stay home and chase the sun, eating French baguette, French cheese and some tartiflette? Lovely to have all these choices and the option to choose none of them at all.

Right, I am about to raid Tony’s fridge for breakfast. I assure you that it shall not be something healthy and boring like cereal or oats porridge! More likely potato waffles with fried egg and a dollop of mayo perched on top.

Wishing you all a sun and love-filled weekend

The basting goose

Wednesday 19 May 2010

Mellow Magic FMdf

When I moved into my flat in Crystal Palace, I sat up most the night in the large bay window, listening to Mellow Magic FM. All the oldies, the ballads that I either grew up with or heard throughout the many years for which I’ve been around. I always sing along, either singing the melody or the harmony. Singing has been a major part of my life, not just as an aspiring singer taking lessons and singing exams, but as a singing coach. Since January, I have lost my singing voice...even when I have my speaking voice, there is insufficient strength in it for singing. This has been one of my major frustrations about my illness...not being able to sing in a variety of styles, loud opera, warm ballad, jazzy crooning, the whole shebang. Now, I can only manage a gentle falsetto when I am fortunate enough to have my speaking voice.

It is 22h42 on the 19th May and I am lying on my bed listening to Mellow Magic. At home, when we eat together, we turn off the television and put on Mellow Magic and we always comment on how they play the same songs every day, weekdays and weekends. The younger readers among you will be thinking, “get a life”, but there is something so relaxing about our Mellow Magic Moments.

It was a difficult start to last week. I must admit that for the first time since my diagnosis, I was afraid and I was also angry. These are two emotions that I hadn’t really felt much before then but it hit me strongly at the start of the week. By late week I had calmed down and was back to being happy and bubbly and full of nonsense as usual. Chemo last Wednesday went smoothly despite a nervous nurse ripping my veins apart for about 45 minutes trying to put a line in. My principal chemo-sitter was Vojta who was told to stop looking at what the nurse was trying to do because it made her nervous, and we had an appearance put in by the lovely Dr. Katz who left in frustration after watching the nurse trying to cannulise me. The whole process took an hour longer than normal but I arrived safely chez Morse later in time for my afternoon nap and for one of his lovely dinners (sausage casserole). Morse not only swears regularly now, he also counts to 5...possibly as a warning to John and Richard to stop and listen to him! The amazing post-chemo news of the week was that not once did I have any nausea! It might have something to do with an extra drug I was given but it was pure bliss not feeling as if I were about to barf any minute. I wait to see if I have the same luck following today’s treatment.

Speaking about today, I booked my favourite nurse yesterday, Ferdie, who is such a laugh a minute. My chemo-sitter today was my cousin Delevine who spoiled me rotten afterwards, taking me out for lunch in the gardens of a lovely pub near Selsdon, I think. I kept falling asleep during it but the scampi and fries were delicious. I got home around 2pm and slept like a log until after 5. It was difficult waking up but I managed and had a lovely meal prepared by Lio, one of my great couchsurfers. Last night’s dinner was hamburgers prepared by Benja. I have put on 2kgs since falling ill and it shows! We always have cake or dessert in our house! Still, I’m not complaining.

This week, I managed to coach one client and also had a lovely meeting with one of the sponsors. Some lovely things were said about my coaching but modesty will stop me from quoting exactly what was said. Suffice it to say, I was mega-chuffed.

Last night I watched a documentary on Zimbabwe which was quite disturbing despite me being more than familiar with events in the country. My eldest niece is moving back there tomorrow and while it is so sad to see her go, I wonder what sort of adventure it will be for her. I consider myself so British when I am living here and am proud to be multi-cultural and be a citizen of more than one country. But there is something about Africa that calls me back, particularly when I am not feeling well. I think it is the sunshine. I feel completely different the minute I see and feel the sunshine. We all do. While the weather in Africa at the moment is cold, wet and downright miserable without central heating, I still long to be on an aeroplane flying “home” for a visit. And I will do that, hopefully for one visit in September, and one in December, health and finances permitting. I have this urge to travel at the moment. Short city breaks...Rome, Paris, Amsterdam...and longer journeys...the States, Canada, India...and I will travel, even if it is the last thing I do!

I have been clearing out the eves of my loft, creating more space and decluttering. This has brought me face to face with many scrap books, photos, objects, letters, cards...a whole gamut of “things” that I have collected and kept over the years. Some of you would be surprised about notes I found you’d written me over 20 years ago. Some wonderful blackmail material (in the nicest way possible) and some really touching moments. I am looking at ways in which I can keep most or all of these memories for you after I am gone but then again, you probably have your own memory banks and won’t need these reminders at all.

I am going to face some challenging moments ahead, let’s have no doubt about that. But, with the love and support that I receive from you all, from all corners of the world, how can I allow myself to be afraid? I simply have no need to be afraid, I simply have to trust in you all, and to trust in myself, in my ability to face whatever comes my way. Together, we can do it!

Thank you once again for reading

Your golden goose

Tuesday 11 May 2010

Prognoses

Something I used to hate doing as a teacher was giving a student a predicted grade. While you had to be realistic, you were also aware that should you be too realistic or too harsh, you didn’t leave any room for improvement. In other words, let’s say that pupil x’s papers were lost or for some reason, the exam couldn’t be written, the predicted grade would probably be considered. In addition, some universities use the predicted grade as part of evidence upon which they base their entrance applications. I guess it is the same with a doctor giving a prognosis. If he/she is too realistic, his/her patient might give up hope and deteriorate more rapidly than if he/she gave a more conservative prognosis. On the other hand, if he/she did not base the prognosis on the medical facts and the general statistics available either through research or personal experience as a consultant, then he/she risks giving false hope to the patient. I’m rambling, I know, but bear with me, I’ll get there. I’m just trying to understand how to react to prognoses from the other side of the fence, as a patient, not as a teacher.

Since my diagnosis, I have tried to pressurise my consultant oncologist to give me a prognosis, a clear picture of how HE saw my health progressing or regressing. Each time, he was evasive and pointed out that while there were statistics, he was in no position to actually predict the future. He was very good at changing the dialogue, at deflecting my direct questions. Normally, as part of my personality, I would probe and insist on direct answers as I hate beating around the bush. I want to know facts, the truth, in order that I might react accordingly. But what are the facts? Over 9 years ago, my cousin Bertram was given 6 months to live, a prognosis based on his diagnosis of stomach cancer. It has been a huge challenge to him but he is still alive and has managed to beat the odds. Other people I know have gone quickly, according to the predicted time frame suggested by their doctors. I don’t think that statistics or predictions can be considered facts, and unfortunately, in many cases of cancer and other illnesses, doctors can only go by their experience, by what they’ve learned and researched, and by patterns they observe in their patients. What might be the case for one patient might not be the case for another.
I have heard the expression that cancer is a silent killer. You often don’t know that it is there until it is too late. We’ve all heard stories of people who have gone in for some random test or symptom, only to find that they have cancer. My consultant thinks that my cancer developed within 6 months. As much as I hated the publicity (and admit to strongly disliking her) that Jade Goody received during her fight against cancer, in retrospect, I realise just how suddenly it can appear and just how rapidly it can overcome the person who has it. I often wonder why scientists can create test-tube babies, clone sheep and do myriad other amazing things, but cannot find a cure for cancer? I cannot understand how or why with all the time, money and effort that goes into cancer research, scientists cannot come up with something...but then again, I suppose that they have come up with some amazing results, just not enough yet to save those with terminal or incurable cancer. I used to, and still have the cynical view of cancer in the sense that no matter how long you escape it, the inevitable is going to happen. Once you have it, it might not get you now, or for the next few years, leaving you in remission, but it will come back and it will come back stronger and you will not defeat it. I feel bad writing this as I feel as if I am disrespecting those people who have cancer and who feel and believe differently, cancer survivors, my cousin being one of them. However, I am not saying that we should all just give up and say “oh well, what’s the use of fighting it if it’s going to kill me in the end anyway...”, to the contrary, I’m just trying to find a way to say: “we all know how this is going to end and maybe we should start talking about it.”

Every time I try to talk about my impending death with friends or family, they immediately put a positive spin on everything and even go as far as saying “you’re going to make it”. My sister and one or two friends have reacted differently and have allowed me talk about it. I’m not criticising anyone or suggesting that avoidance – in this case - is the wrong approach, I’m just saying that sometimes I want someone to be realistic with me, to acknowledge my need to say out loud: “I know how this is going to end” even if I am prepared to fight it all the way. I need to talk about how I want to die and what I want to happen after my death. I need to talk about who wants what of the few possessions I own, about what kind of “service” I want...I need to talk to you to reassure myself that you are going to deal with my death in a healthy way, not in the way that I dealt with my grandfather’s death for many years, hanging onto pain and sadness and loss instead of moving on, of celebrating life rather than mourning death. I need to know how you really feel, even if it means that we end up crying together, because I know that it will make us more prepared and stronger for having had the conversation.

Today, I saw Dr. Lee, the senior consultant whom I have never met before although he has been my consultant oncologist on paper. I had been quite stressed about this appointment as I knew that he would have the results of my latest chest and abdomen scan and that he would make the decision as to whether or not to proceed with the final two cycles of chemotherapy. Dr. Lee was as friendly as Dr. Forster whom I’ve been seeing until now, but I sensed that with Dr. Lee, if I asked him direct questions, I would get direct answers. You see, there is a cultural difference here. Dr. Lee is Chinese, not even British-born Chinese, whereas Dr. Forster is pure British. Now before you think I am about to make racist assumptions, I will admit that I am perhaps making a cultural assumption but it is an assumption based on my experience of living and working with British people over the last seven and a half years or indeed, for most of my life. Dr. Forster was always careful to be polite, to look on the bright side, to smile and not actually say anything too upsetting. Dr. Lee, however, just said it straight out. No hesitation, no sugary coating, just answered my direct questions with direct answers. And while I didn’t like what he said, I appreciated at last having a frank conversation about my health. Yes, I am speaking about my prognosis. I am not going to tell you what he said and I will reiterate that he was only saying what he knew from experience, not fact. He did make it clear that there was no way of knowing exactly but in his experience, that was what he thought. I need to emphasise to you, friends and family, that I am not going to let this information affect me negatively; it is information that I needed in order to have a reality check, in order to have a clearer and more honest framework on which to base my future plans. As I said in previous blogs, one should always remain positive and there is always hope for a miracle cure, whether through medicine or through alternative measures.

Over the weekend, I coughed a lot more than usual and reminded myself to gargle or to get out my stash of strepsils. But of course, laziness set in and I didn’t do either. The result? I have lost my voice again. The oncologist gave me an antibiotic to help fight the chest infection that was causing the cough to be so active so hopefully, if I am able to shut up for a few days, I will get my voice back a lot more quickly than the last time I lost it. Unfortunately, I had to cancel my clients for today but at least I got some rest. Although the results of my last scan show that little change has taken place since the last two cycles of chemotherapy, I agreed to go through with the last 2 cycles which I start tomorrow. I’m not going to moan about it as this was entirely my choice, not an easy one to make, but the right one. I have nothing to lose and possibly something to gain from going through with the treatment. Dr. Lee has said that if at any stage I change my mind, then I can withdraw. So, tomorrow I shall head off to the Rosenheim building once again and hopefully have enough voice to give the nurses a run for their money. My chemositter for tomorrow is meant to be Vojta and I might stay with Morse in Liverpool St afterwards. Nothing confirmed yet. It was really great to see David McGregor (ex Bishop’s Stortford College) yesterday when he accompanied me to my oncology appointment. I hadn’t seen David for at least 5 years; he is in the final stages of his medical degree. It was nice to be able to chat to him about my appointment with the oncologist. Each day I realise just how blessed and enriched I am by all the amazing people in my life.

Right, let me sit back and watch some television while my numerous couchsurfers look after me. What a life!

Until next time,

Au revoir.

Wednesday 5 May 2010

Dreams

Two nights ago I woke up frightened by a dream I had just had. My heart was pounding, I was breathless, and had to go downstairs for a glass of water. I wished that someone had been awake to keep me company but the one couchsurfer who would have been awake at that time, has left. The dream involved me watching my own death but while that was strange enough, the frightening part was watching my body thrash about as it waited for (what seemed) my spirit to depart. On the other hand, it could have been that I hadn’t yet died and the thrashing about was me in my last throes of death. I remember clearly the smell of death, bodily fluids leaking, and the second me trying to cover the body and get it to lie still, trying to put some dignity back into death. But the body would not lie still and the first me would not die. Fortunately, I woke up then. Now, my “religious” (I’d rather say “believer”) friends might interpret this as a sign that we are more than flesh and blood, that there is an after-life and that it was indeed my soul that was troubled, perhaps at facing the less pleasant of the two paths we might take after death. I will admit that I did give this train of thought my full consideration once I had calmed down. I also thought back to what might have prompted this dream, writing – in my diary – every step of the dream before it faded away, and I think I understand most of why I had the dream. I believe that it was mainly prompted by the high level of stress I have experienced lately, worrying about family issues, my health, my lack of sleep due to lower back pain which spreads round the left side of my body to my lower stomach (I take a pain killer every four hours), worrying about taking pain killers and so on and so forth. Now, you might be saying, hang on, he is a coach, surely coaches don’t sit there worrying, they focus on the solution, not on the problem (you’ve heard me say it often enough)? And yes, you are right. However, I have had a general feeling of malaise lately that I cannot shake off and this has dominated my thinking processes and inhibited my ability to function. I simply do not have the energy to do much. I have, since getting home Sunday night, had random bursts of energy which do not last long and any human interaction that lasts longer than an hour has a big impact on me and it seems to take ages for me to recover my energy. I hate, and I repeat hate writing about this. In fact, this is the first blog that I am forcing myself to write and will have to force myself to publish. I prefer writing about positive issues, about positive dreams and aspirations, about strengths, not weaknesses, about moving towards something good, not away from whatever bad issue or place is behind me.

So, what is the solution, Mr. Coach? Well, in terms of energy, for starters, I am going to start popping Vicki’s magic pills that she so lovingly orders for me. They are natural vitamins and actually help (when you take them regularly). I am also going to start eating a proper breakfast and lunch every day. I think two waffles covered in (my now finished) speculoos (sugary-sweet sesame seed paste like peanut butter only available in Belgium, hint hint) for breakfast do not constitute an energy-creating most important meal of the day. A slice of toast for lunch is also not going to help despite the fact that I snack on seeds and nuts during the day. So, my diet (read nutrition, not weight-loss) needs attention and I actually went to Sainsbury’s yesterday evening with a more sensible head on my shoulders than before. I also intend getting out of the house even if it is as cold as it has been lately. I have not been exercising, mainly because I have not felt that I had the energy to do so, but this is more the reason for exercising...to break this malaise or feeling of lethargy, I need to get my body and mind working again and a walk or two will not kill me.

A friend wrote to me recently and among all the thought-provoking things she said, she spoke about the expression “what doesn’t kill you will make you stronger”. She had spontaneously used this expression in response to sympathy she had received from a neighbour recently. My friend decided that she does not like this expression and wondered why she used it so spontaneously. I use it too. In fact, I have adapted it in terms of my illness to something like: “if this doesn’t make me a better person, then nothing will!” But what am I saying? That I wasn’t a good person before I got diagnosed with cancer, or that we need some tragedy to make us better people? And in terms of the other expression, do we need bad things to happen to us to make us stronger? Can we not become better people just because that’s the way we should be anyway or do we need to have a clock ticking, warning us of our impending death before we kick our butts into action and start cleaning up our act? Something else people (and I) keep saying is, “well we’re all going to die some time; we could get hit by a bus, for example.” But do we think about what we’re saying, or do we just rattle off these expressions without a second thought?

Back to dreams. I noticed that one of my nieces has two dream-catchers in her room. You know, those hanging things that look like a spider’s web which apparently catch your dreams (and do what with them?). I wondered about them and thought about installing several in my loft to catch some of the bad dreams I have. The good dreams I’ll keep for myself, thank you very much, but the bad ones, the dream catcher can have.

Forget dreams, let me share some nice realities with you before you think that I have had an awful week and am ready to give up on life. Last week Wednesday, I took a bus to visit Adam’s wife and son, Vicki and Daniel. Now, I am not good with really young babies; I don’t know how to hold them and at the first sight of tears or vomit and I literally throw them back at their parents and leave on the next bus or train. So, I confess I was slightly pleased that little Daniel was asleep when I got there as that meant I wouldn’t have to worry about whether or not he would like me, or if he would cry or throw up or both. But before I left, Vicki took me upstairs to see if Daniel was awake and when we opened the door and his black-out blind, we found this gorgeous little creature lying on his side, holding his mobile in his cot, and beaming with a smile from ear to ear! Well, “slat my dood met 'n pap snoek” (slap me silly – knock me dead - with a wet snoek – a type of yummy South African fish) I was almost moved to tears. Yes, I’m such a girl! This little 6-month old baby was all smiles, no tears, no vomit and thanks to pampers that flex but do not leak (according to the advert), he even smelt nice! And smile and smile some more he did. For the entire time that I held him as best one can hold a rubbery child who can suck his own toes, or his mother threw him into the air (don’t parents realise that us non-breeders freak out when they do this no matter how much their kid might be gurgling and wetting him or herself with the pleasure of being thrown ceiling high? I mean what if you miss on the way down? Okay, I am exaggerating, in case any of you work for child protection!), he smiled or rather, he beamed. I even thought, gosh, I want one of my own now, and I haven't thought that in ages! Anyway, Daniel’s big smiles have lived in my heart all this week and when things have been tough, I have remembered that shy, friendly, almost adult-like smile...like he knew something we didn’t...that he gave his mom and I. What a blessing. If I knew how to put a photo into this blog, I would put one up of him smiling. Other nice moments include the lovely food my family cooks (I am really lucky to come from a family that knows how to eat well and cooks accordingly), the spontaneous visits from Rob and Alex who both keep me and my couchsurfers entertained, evenings around the table with my couchsurfers, various visitors I’ve received or people whom I have visited. If I were to name you all, it would take a while.

Update on the cancer: I am seeing my oncologist on Monday. At this appointment he will give me the results of my last scan and make the decision about the chemotherapy. You all know how I feel about that so I won’t repeat myself. I will let you all know on Monday evening how that goes but don’t forget that although my appointment is for 3pm, I probably won’t get home before 7pm at the earliest as he always runs 2 to 3 hours behind.

It is now 06h16, I have been awake for over two hours now and need to go back to sleep. Thank you for reading and please do feel free to comment or to email me for individual responses. I take a while to reply but I do get there eventually.

With love and peace
Goose