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
Wednesday, 30 June 2010
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) :)
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
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
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
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.
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