Friday 23 April 2010

Early Warning Systems

It is quite amazing that our bodies have built in early warning systems. In this instance I am referring to what happens when you are asleep and you’re dreaming that you’re a fireman putting out a fire. You uncoil your hose (steady!) and start spraying the flames then you increase the water pressure and it is at that moment when you wake up in a sweat realising that you’re actually an accountant, not a strapping fireman with a good length of hose, and that you are about to pee in your bed. I had a similar dream last night except that I dreamed that I was not feeling well, as in feeling like I was going to be sick. In my dream, I had dragged myself to the loo and was sitting on the bath draped over the bowl (I think we have all been through this after a night on the tiles) but I didn’t actually get sick in my dream (thank goodness). I felt it building up and that’s when my early warning system kicked in and I was able to roll off the bed and grab the dirt-bin nearby. Fortunately, it was a false alarm but I did lie there for ages too scared to go back to sleep as the nausea was quite extreme.

Pleasant reading so far? I sometimes wonder, when I’m writing this blog, if I should say what I’m thinking or really feeling, or if I should filter out things that others might find be uncomfortable reading. Actually, having allowed myself to be open to all sorts of emails, chats, advice, comments etc from friends over a range of topics (such as the future of my soul, my stupidity for eating meat when it clearly (?) contributes to the cause of cancer) I think fair is fair and if I can take it, then I can give it back. I want this blog to be a reflection of my current views on things past, present and future. I retain the right to change these views as I either grow up more or learn more about life. I also hope that you will all continue to share your views and thoughts with me as I embrace it all in the spirit in which it is offered whether I agree or not.

The word learning has triggered off another train of thought. I love coaching one client in particular at the moment because she is just growing as a person and professional from session to session. She is opening herself to learning more and more. Anyone who knows me well will know that I love learning. I am curious about so many things that if I had a brain big enough (several CT and MRI scans have squashed this ambition), I would study a huge range of topics and languages, and maybe even learn some maffs (maths) while I am about it. I use to love the way my inner-city pupils would say “maffs” or “I live in For’en Heaff (Thorton Heath)”. Anyway, while looking at different goals my client was surprised when I asked her to list three types of goals: Achievement Goals, Learning Goals and Enjoyment Goals. She had no idea that Enjoyment Goals existed. How often do we actually plan to enjoy ourselves, whether it is during the week, the weekend, month or year? Or do we just leave it to chance? I know that this weekend is going to be sunny but I haven’t actually decided what I am going to do for fun. I have a scan on Saturday afternoon but that’s hardly going to be the highlight of my weekend! Well, I should hope not! There is a possible braai (barbecue) at Rob and Alex’s on Sunday (email me if you want directions haha), a visit to Vojtech in Brighton on Saturday before or after the scan but what if I planned something special for myself, like a jaunt along the Thames, an outdoor concert/gig? What I mean is an hour or two of me time! Time that I spend alone enjoying my own company, whether outdoors creating havoc or indoors eating a sneaky magnum in my special spot in my home...

I am finding myself becoming increasingly protective of my time and hesitate to accept long-term arrangements. I am also enjoying having those moments when I can be alone to do something, no matter how trivial, on my own. I am turning off my mobile more often (I could never have done that before) and no longer feel guilty about not always answering my telephone every time it rings. Friends leave messages, salesmen don’t, and even my mother has overcome her maternal instincts and allows me to not reply immediately to texts or messages. This is a huge turn around on my part. I was always quick to freak out at people who did not answer their mobiles or who did not respond to a text within a “reasonable” time (“what is the point of having a mobile phone if you don’t bloody well answer it?” I used to scream at the offending person, very often Adam!). I still respect appointments and do use my phone to ensure that pre-arranged events take place as planned, but I am realising that I had become so attached to this device and that it was no longer just a tool designed to help me communicate better, but had become an instrument of intrusion. I have no intention of throwing away my mobile or of not using it regularly, I’m just saying that if you text or call me and I don’t reply or answer for a day or two, don’t be alarmed. If I am ill or gone to be with the budgies in the sky, there is a mechanism in place that will alert you to this fact so don’t panic.

Okay, let’s talk about the big C. Not going to lie to you, I have HATED the last 10 days. Chemotherapy on both Wednesdays has brought the usual challenges. To the extent, however, where I know for certain that I no longer want to do this. I hate the person I am forced to become through the side effects caused by chemotherapy and while I know that it is doing me good, I simply and plainly do not want any more of it. I am having a chest and abdomen scan Saturday afternoon and am seeing my oncologist on the 10th of May. He will make a decision, based on the scan, if he is going to complete the six cycles or stop after this one, the fourth (which I have just completed). I will leave the decision entirely up to him and will not let him know how strongly I am against the treatment because I know that that will influence his decision (he has made that clear in previous appointments). I do not feel strong enough to go through another 4 weeks of chemotherapy. You might think and believe that I am strong enough and yes, I can and will do it if I have to but I must warn you, I shall be kicking and screaming my way through it. The oncologist will decide if having the last two cycles will do more good than bad (my liver and kidneys do not enjoy chemo) and if that is his professional view, then I will abide by it and see it through. But, let’s all hope it isn’t and I can say that I have done with chemo for a while!

I am itching to travel. My weekend in Germany and Belgium courtesy of friends has got me started. Interestingly, Morse (the parrot) has suggested to his friends John and Richard that we should go to Spain for a long weekend in May. Morse is still working on it (he has to repeat things several times before John and Richard learn) so fingers crossed! I have never been to Spain and would love a cheeky weekend away in some sunshine. I have whipped out Tony’s “Spanish in 60 seconds” dvds and should be fluent before you can say "bob’s your uncle". This reminds me of a time when I was forced to teach beginner Spanish (having no clue about Spanish). I learnt on the wing, so to speak (actually, I am not sure about that expression but I think it is as close as I’m going to get), and practised before each lesson. Two problems: firstly, no-one told me that the Spanish don’t say the letter “v” (which becomes “b”) so fortunately, I stopped our counting lesson at number 19(!), and secondly, come parents’ evening, a Spanish mother rattled off at me in Spanish and I had to confess that I hadn’t a clue about what she was saying, although I did say "si, si" a few times! The kids knew that I couldn’t speak Spanish (it was a 6-week taster course to help the students decide which foreign language they wanted to choose) but this particular sprog later confessed that he told his mom that Spanish was my mother tongue just to see me squirm. Anyway, Polish in 60 minutes, Spanish in 60 seconds, Farsi in 60 years, bring it on. I want to speak them all!

Back to travel, I want to fly to Nice to see Sue and Errol and a budgie-yellow loft room with a quick train trip to Antibes to sing and dance with Pam. I want to go to Amsterdam, to Paris, to Brussels, to Berlin and Cologne, to Glasgow, to Oxford, anywhere that involves an adventure. I also want to stay at home a lot and visit locally. A lot of this is brought on by the sunshine. Excitement is in the air. Elections are coming up, volcanic ash is dispersing, babies are being made and being born (I am watching one friend’s flat stomach with growing interest), people are smiling again in London, I saw our brand new tube doing its trial run through Norwood Junction, the tree outside my property is flowering and my chilli tree is coming alive again, producing green chillis. Unfortunately, the African Violet has finally given up the ghost and cannot be revived but I have plans to put some multi-coloured flower-thingies (have no idea what flowers/plants are called) in the bowl instead.

I am raring to go; I am keen to purge myself of this toxic waste and move, live, fly, learn, laugh, cry and only then, die!

Thank you for reading

All my love and respect

Goose

Wednesday 14 April 2010

Chemo 4

Eurostar does some strange things. On Monday, hurtling back from Brussels I watched District 9, not my usual choice of film but the South African humour was great. We pulled into Lille and looking through the window, I noticed no passengers on our platform but loads of passengers staring longingly at our train through the glass partition separating the two platforms. Om ‘n lang storie kort te maak (to cut a long story short), our train pulled in on the wrong platform and we had to wait 20 minutes for the station authorities to open the glass partition and allow the passengers onto the train. I got in late, was 45 minutes late for my oncologist appointment but that didn’t make any difference because my oncologist was running his usual 2.5 to 3 hours late. I had an interesting discussion with one of the nurses today who encouraged me to write to the CEO to complain. I heard them giving the same advice to other patients on Monday. The long waiting period means that people cannot plan ahead. I have seen elderly people parked in a wheelchair from 2 ‘til 6 waiting to see their doctor or waiting for transport. The doctors and nurses are good but I do think they need to sort out this waiting period as it is bad enough going there in the first place without having to wait long hours for a 10 or 15 minute chat. I still, however, would not spend money on private medical care!

Today’s chemo went smoothly. Passed all the bloods so the chemo was there waiting and I was able to get started immediately. My chemo-sitter today was Pete and he was on time and cheerful as usual. He told me to stop being a girl about needles and made me drink gallons of water! But he was a great companion and helped make the time fly by. I was pleased that Pete was there when I had a chat with one of my oncologist’s nurses. I had been mulling over my doctor’s suggestion that he might stop treatment after this cycle. My argument was that I had prepared myself for 6 cycles and therefore should go through all 6. In addition, I thought that the extra 2 cycles would zap the cancerous cells even more so that they wouldn’t come back so soon. The nurse explained that sometimes, having the 2 extra doesn’t make much difference at all and in fact, as chemo does some general damage while doing a lot of good too, the doctor would make a judgement call after the next scan. It is true that my liver and kidneys have taken a battering from the chemo and this is something on which that they have to keep a close eye. I asked the nurse how long she thought it would be before the cancer would reactivate and she said that in some patients, it is 3 months, in others 6 months and in others, much longer...there is no way of telling. Bearing in mind that we don’t know how long it took my cancer to activate, I understand my doctor’s reluctance to put any time frames on my condition. I was, however, pleased that the nurse was willing to speak about other cases in general. I also feel at ease now about the chemo possibly ending after 4 cycles, and not 6. I am no longer, however, totally at ease about my own prognosis. I am listening to my body very closely and while it is saying good things to me, my appointment on Tuesday brought on more possible complications. However, the two medical specialists are finally going to communicate with each other and that can only put me in a better position. The coughing has returned the last few days and this is discouraging. I don’t know, I am still positive, cheerful and optimistic, but I also need to be realistic and unless a miracle takes place, which is quite possible, it is going to be a difficult road to travel. I think that what I need to do is wait patiently for the next scan (in 2 weeks’ time) and for the oncologist’s decision about the chemotherapy based on the scan (10th May is my next appointment), before worrying about what might happen. I need to take one day at a time and put into practice this thing called patience that I have been learning!

I have felt a fair amount of discomfort tonight but I am about to take my happy pill and sleepy anti-sickness pill so I should crash soon. So far, the dreaded hiccoughs have not arrived and insh’Allah they will not arrive before tomorrow morning at least (and I mean late morning, not 2am!).

Good news tonight, my cousin Chantelle finally gave birth to a huge 3.1kg baby named Eva. I have to post the Pepper Pig dvds to my godchild Maya quickly so that she will have her own distraction!

Right, bed time for me. If anyone would like to chemo-sit next week in central London (Warren St/Euston), it starts at 11 and should be finished by 12h30. You need to be non-squeamish about needles and be cheerful (if you’re not hard on the eyes then that helps too). Haha, that was cheeky. So, drop me a line and I will put names in a bag if I get more than one response!

Sleepy but ever alert

Goose

Saturday 10 April 2010

Change

I’ve never been good at accepting change. I hate it when people leave, when things don’t according to plan, when I find myself in a different place, with different people. I guess that one of my challenges has been to accept the changes that cancer – or any other illness – brings to your life. Having said that, I have striven to maintain my life as it always was, despite this illness. This brings me to another issue...I no longer feel justified in calling what I have, an illness. I do not feel ill and I do not look ill. In fact, the only reason I resent chemotherapy is that it makes me feel and look ill. Consequently, between treatments, I often forget that I have cancer. I think that this is a good thing. I am not, in any way, in denial. I know what is in my lungs, and I know that I could win or lose this battle at any time, but I also know that my body is saying to me: you’re doing alright! All the feedback I am getting from my lungs is positive. My coughing has reduced, I can walk up the escalator without collapsing at the top, I can carry bags back from Sainsbury’s, and horror upon horror, I am putting on weight again! I had a laugh with my barber last week as we compared double chins (he is 23 and proved to me that everyone has a double chin if they put their head down). Incidentally, Adam (my barber) and I cannot gossip about his brother Evan any more when he is cutting my hair because in the new shop, Evan has put in CCTV and apparently asked Adam why he is always telling customers (in other words, me) all his secrets!

Back to change. One of my couchsurfers is leaving this Tuesday. There have been occasions when I have welcomed a departure of one of my couchsurfers, but more often than not, I hate it when one of them leaves. We become a unit, a family, we learn to look after each other and we also learn when to give each other space. When one leaves, I feel what a parent must feel when one of the fruits of their breeding leaves home. Yet, we always keep in touch and yes, you do “get over it” and in no time, a new couchsurfer arrives with his or her own interesting personality and you move on.

Some changes that people have to face in their lives involve a lot more pain than losing a cheeky couchsurfer. Close friends of mine in Belgium have recently returned their son Timothée to Mother Nature. Having carried Timothée for 6 months, having known a lot about him via the amazing medical tools that exist these days, and having forged a relationship with him, my friends had to accept that he was not meant to be part of their physical life. Visiting them in Brussels this weekend, I am encouraged by the way in which they are adapting to this change, embracing their grief but at the same time, speaking about the future. Our minds and bodies have an amazing way of adapting to change and although it is considered a cliché, time does heal all wounds provided that we let it do this. We need to accept the challenges and sometimes negative changes that life throws at us, and more importantly, focus on the positive changes that lie ahead. This does not mean forgetting the past, but it does mean remembering the good parts in order to find the strength and encouragement to move forward. I believe that my friends are able to move forward towards a new and brighter future, rather than moving away from a painful past. Thinking about them as well as a certain young person in South Africa who is going through a painful breakup, I cannot help wishing that I could just “fix” it for them and anyone else who is facing painful challenges and changes. Just wave some magic wand and make it all better. All we can do for them is wish them strength and vision for the future. Believe in the ability of your mind and body to adapt to change and wait patiently or impatiently for time to do its healing thing.

Something that bothers me slightly about this blog is that I worry that people might think that I have turned into some kind of saint or authority on everything. A few of my friends have assured me that I could never aspire to sainthood – which is entirely true – and as for knowing everything, once again, life has a way of bringing us down to earth every time we get too arrogant. I have a young friend who crosses the fine line between confidence and arrogance and by his own admission people occasionally don’t like him because of this. However, people sometimes look up to you and in a sense, build you up which can lead to you becoming if not exactly arrogant, a little over self-confident. I remember learning the expression about realising that people have “feet of clay”, in other words, no matter how much you look up to someone or build up their image in your mind, they are simply human. My concern was that somehow, in my blog, I was giving the impression that I had all the answers, that I was this super-person who was told he was dying but has managed to accept this, cope with it, fix his own and the world’s problems, offer parting pearls of wisdom to everyone and who was going to part peacefully on towards sainthood. Nothing could be further from the truth (now I’m worried if that should be farther, rather than further!!!). I am often struck dumb with no answers to give, I am often angry and frustrated over silly and inconsequential issues, I still get a little nasty when I feel threatened, and there is still so much work to do and so many things to learn about life. I don’t want this blog to become a preacher’s pulpit; it has been and always will be a typed (and control-z) representation of my random and sometimes focused thoughts which, by virtue of my ability to never shut up, hopefully gives you all a serious and humorous outlook on what is going through my ever-busy mind and life.

As I said earlier, I am in Brussels, having raided my friends’ fridge and food cupboard. I woke up before 5am with the munchies (who would have thought that herbal tea could have the same effect as other natural herbs?), so I went downstairs to see what I could find, made myself a coffee and decided to write. My friends have redecorated one of their loft rooms for me and I love the colour (I would call it budgie green but that’s because I love budgies). Ha! I have just thought about Falcon College, many years ago, a great school in Zimbabwe. One of the activities the boys could choose was Falconry. For some reason, the boys called their falcons “budgies” (or maybe it was the jealous non-falconers who called them that). I remember a story about a certain Julian Stewart (I may be wrong) crying because another boy’s budgie ate his budgie. Budgiebalism rather than cannibalism! The sick part of me found that rather hilarious. Anyway, back to my budgie-green loft bedroom. As most of you will know, I love my own loft room in London and if I had my own way, I would get everyone who owns a loft to turn it into my guest room. There is something about being in the roof space that appeals to me. I can see the tops of trees, the sky and both at my place in London and this place in Brussels I can see and hear aeroplanes flying over the house. There is something cosy and safe about being at the top of the house. I love houses, consider myself a latent property developer and apart from lofts, I also love basements which I think should always be turned into wine cellars and entertainment rooms (for those of my doubting friends, remove the images of hooks, whips and chains attached to the wall that I KNOW you’re imagining I would have in my own cellar – I am well over that fantasy!). Houses in Europe tend to have both lofts and cellars. I guess that in Africa, you’d cook yourself live living in a hot roof space, and in England, most our houses are divided into two or three apartments so the chances of you having both are slim. Wherever I have lived, I have always created one special space for myself. In my little flat in Mafikeng, I had a tiny corny just outside my bedroom which I called my “sulking” corner. It had an antique armchair, a stunning lamp (which Pete and Karen made for me years ago and which I still have), and a selection of leather-bound books placed on a glass-topped table. That is where I would read quietly or just sit and think. In my current house, it is my loft room that is my special room, adorned with scarves of mainly orange colours, but with a new addition of a mainly (budgie) yellow Kenyan wrap which Ian and Storme gave me a week ago. My piano, ‘cello and guitar all have special scarves draped over them, and I guess the violin is coming out of storage – don’t worry, I shan’t torture anyone by playing it – to prop up the Kenyan wrap. I wonder if you have a special place in your own home? If you don’t and feel so inclined, maybe stake a claim on a spot and put your mark on it...something that will make you want to go there to be alone with your thoughts and secret pleasures.

This week is going to be challenging and will involve changes to my currently peaceful life. I have to return to London tomorrow and head straight to my oncologist, have blood tests, see my chest specialist on Tuesday, welcome a French friend and say goodbye to another French friend (I don’t deal drugs, I deal Frenchies), and face my chemo treatment on Wednesday which brings its own set of unpleasant challenges and changes in the days that follow. But, I can and will embrace it all as much as I don’t want to do so. It won’t be fun but it won’t be half as bad as I will make it out to be either. So, my dear friends and members of my dear family, it is 7am in Brussels, time for me to go back to sleep. Wishing you all an amazing end to your weekend,

Your orange-zest flavoured

Goose