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
Monday 31 May 2010
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
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
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.
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
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
Subscribe to:
Posts (Atom)