Monday, 13 May 2013
Coke Floats & Chemo: Five Days
Coke Floats & Chemo: Five Days: It's a five day countdown to "Play Day" when Coke Floats & Chemo opens at the Brighton Fringe, and it is getting all very ...
Five Days
It's a five day countdown to "Play Day" when Coke Floats & Chemo opens at the Brighton Fringe, and it is getting all very exciting, nervewracking, and there is still so much to do. I was trying to stay focused and on-task with one of my several-pages-long-to-do lists steering me in the right direction when the postman brings the letters. I really should say "THE" letter.
It's the copy of the letter from the Consultant Oncologist to my GP, stating exactly where we're at with my cancer, following the meeting we had a couple of weeks ago where both WM and I came out feeling confused, and with totally different understandings of what had been said.
Well now it's all in black and white so there is no confusion, but more than a little bit of shock. Reading the letter, "Treatment" is the word that has caused us such confusion. Yes, they think the cancer spread to my spine has been "treated" but treatment does not have the same meaning as "cured".
It was probably there already when chemo started, and all chemo can do to bone metastatic disease is to slow it down and reduce the size of the tumour, it cannot cure it completely.
The letter makes it very clear that I now officially have Stage IV metastatic disease, which is the terminally ill variety. The letter also very kindly states that I took the news "very courageously". It's easy to be courageous when you don't fully understand.
It's good to know what the bottom line is. I can now look the enemy in the eye and get on with fighting it on the beaches or whatever.
Terminal illness takes various forms though. There is the Hollywood romantic version where the beautiful heroine lies on deathbed with her nearest and dearest gathered around, looks fragile and angelic, says a last line of wisdom that will change everyone's life for the better forever, and then she swoons towards a quick and painless death.
I really don't want that one.The one I want is this: "Shame she didn't see the nightbus coming when she was leading the hokey cokey dancing over Waterloo Bridge, but she was 94, she's had a good life, and what was that nonsense she tried to tell us all those years ago about terminal cancer?"
There is a load of stuff I can do to help me stay strong, boost my immune system, and delay the onset of the end, and quite frankly, right now I feel so fit and well and energetic that I think I could keep going for a load more years. That's the irony, after months of breathlessness and fatigue and feeling like death-warmed-up, the very week we had this fateful meeting with the Oncologist it was like a switch had been turned back on, and my energy levels and wellness just flooded back in, making me feel better and fitter and younger than I have for several years before I ever got diagnosed.
So back to the cancer curing diet I've yo-yoed on about for several months. Slowly but surely this time, introducing 2 or 3 more elements every couple of weeks or so to ensure I don't completely set myself up to fall right off the wagon. I'm very pleased so far with my progress, I'm drinking 3 cups of green tea every day and going on the exercise bike twice a day too - and I've kept this up consistently for a fortnight.
The real hardcore weaponry against cancer is the conventional medical treatment, and I'm really lucky to be getting the very latest, best and most effective of everything on offer. All the other little bits and pieces I can do for myself aren't a substitute, but could help to influence the outcome for two reasons. Firstly, they can be effective, secondly, it gives me a sense of empowerment, of being in the driving seat and in some sort of control, all things that are really important if I am to keep going for years upon years.
So what is the bottom line? The average length of life past this specific diagnosis is a bit more than 2 years. However, some manage 10, and with new treatments, that 10 may stretch to 15. Well I never intended to be average, so I'm aiming for 30.
Meanwhile, back to Coke Floats & Chemo, this is the week I should be having a ball, and I'm not going to let some silly words on a page rain on this week's parade.
Last week, we were on Ridge Radio, with the lovely Dave Roberts during his "Music for Grown Ups" slot. It was a really fun evening, with my daughter Francesca (who is also in Coke Floats & Chemo), the fabulous Alice, and miniYvonne who made some really rude gestures on air. If you'd like to listen to it you can, here's the link:-
If you want to come and see me make a complete idiot of myself on stage, we're at the Brighton Fringe this Saturday, 18th May, performing two shows at 1.00pm and 3.00pm at The Friend's Meeting House. Tickets are only £5.00 and the show lasts about 50 minutes. It would be lovely to see you there. If you do come, please come and say hello afterwards, that would be really good. The link for tickets is:
It's the copy of the letter from the Consultant Oncologist to my GP, stating exactly where we're at with my cancer, following the meeting we had a couple of weeks ago where both WM and I came out feeling confused, and with totally different understandings of what had been said.
Well now it's all in black and white so there is no confusion, but more than a little bit of shock. Reading the letter, "Treatment" is the word that has caused us such confusion. Yes, they think the cancer spread to my spine has been "treated" but treatment does not have the same meaning as "cured".
It was probably there already when chemo started, and all chemo can do to bone metastatic disease is to slow it down and reduce the size of the tumour, it cannot cure it completely.
The letter makes it very clear that I now officially have Stage IV metastatic disease, which is the terminally ill variety. The letter also very kindly states that I took the news "very courageously". It's easy to be courageous when you don't fully understand.
It's good to know what the bottom line is. I can now look the enemy in the eye and get on with fighting it on the beaches or whatever.
Terminal illness takes various forms though. There is the Hollywood romantic version where the beautiful heroine lies on deathbed with her nearest and dearest gathered around, looks fragile and angelic, says a last line of wisdom that will change everyone's life for the better forever, and then she swoons towards a quick and painless death.
I really don't want that one.The one I want is this: "Shame she didn't see the nightbus coming when she was leading the hokey cokey dancing over Waterloo Bridge, but she was 94, she's had a good life, and what was that nonsense she tried to tell us all those years ago about terminal cancer?"
There is a load of stuff I can do to help me stay strong, boost my immune system, and delay the onset of the end, and quite frankly, right now I feel so fit and well and energetic that I think I could keep going for a load more years. That's the irony, after months of breathlessness and fatigue and feeling like death-warmed-up, the very week we had this fateful meeting with the Oncologist it was like a switch had been turned back on, and my energy levels and wellness just flooded back in, making me feel better and fitter and younger than I have for several years before I ever got diagnosed.
So back to the cancer curing diet I've yo-yoed on about for several months. Slowly but surely this time, introducing 2 or 3 more elements every couple of weeks or so to ensure I don't completely set myself up to fall right off the wagon. I'm very pleased so far with my progress, I'm drinking 3 cups of green tea every day and going on the exercise bike twice a day too - and I've kept this up consistently for a fortnight.
The real hardcore weaponry against cancer is the conventional medical treatment, and I'm really lucky to be getting the very latest, best and most effective of everything on offer. All the other little bits and pieces I can do for myself aren't a substitute, but could help to influence the outcome for two reasons. Firstly, they can be effective, secondly, it gives me a sense of empowerment, of being in the driving seat and in some sort of control, all things that are really important if I am to keep going for years upon years.
So what is the bottom line? The average length of life past this specific diagnosis is a bit more than 2 years. However, some manage 10, and with new treatments, that 10 may stretch to 15. Well I never intended to be average, so I'm aiming for 30.
Meanwhile, back to Coke Floats & Chemo, this is the week I should be having a ball, and I'm not going to let some silly words on a page rain on this week's parade.
Last week, we were on Ridge Radio, with the lovely Dave Roberts during his "Music for Grown Ups" slot. It was a really fun evening, with my daughter Francesca (who is also in Coke Floats & Chemo), the fabulous Alice, and miniYvonne who made some really rude gestures on air. If you'd like to listen to it you can, here's the link:-
http://www.mixcloud.com/musicforgrownupswithdaverobert/yvonne-newbold-talks-about-her-battle-with-cancer-her-positive-attitude-and-writing-a-play/
Dave took some lovely photos afterwards, and Francesca and Alice should really have known better than to let me manage miniYvonne - she looks very drunk and disorderly in the photos of just the two of us. Please notice the interchangeable hat and wig - we really could be twins!
We're also being featured on several websites, this one, Broadway World, has used the press release I sent out in it's entirety, which is lovely:-
So, got to go and learn some lines. At this rate, I'll be making them up and talking nonsense on Saturday. "So, what's new?" did I hear you whisper?!
Saturday, 11 May 2013
Coke Floats & Chemo: My first year of cancer
Coke Floats & Chemo: My first year of cancer: Guess what I did this week? I had my first haircut for over a year! Yes it's growing back at long last! I was really lucky and found a p...
My first year of cancer
Guess what I did this week? I had my first haircut for over a year! Yes it's growing back at long last! I was really lucky and found a post-chemo trained expert who has a salon less than half a mile from my house. What do you think?
Today is the first anniversary of my diagnosis. This time last year, like virtually everyone else who is told they have cancer, I never expected to still be alive a year later. Now that I understand so much more about breast cancer and its treatment, I can see how crazy that fear was, but at the time it was very real indeed. I can recall every tiny nanosecond of that day in full technicolour and bose surround sound, and in some ways it seems like only yesterday, and in others, it feels like it was hundreds of years ago.
Yesterday it was 34 years since my mum died, and again, some parts of that day are still so raw and real that I can almost feel and taste them, but in other ways it seems so long, long ago. It's funny how we measure our lives in easy-to-manage blocks of time and bestow certain feelings of sadness or happiness on certain dates of the year depending on what happened to us on corresponding dates in previous years. Of course I thought of my mum yesterday, and I thought of my diagnosis today, but I actually think of both my mum and my cancer everyday, so that's nothing special. If a year with cancer has taught me anything, I think it's taught me to grasp and cherish every moment of happiness whenever I can, with no guilt or fear whatsoever, providing it doesn't hurt anyone else, . So, despite the dates, I've had two very lovely days.
A year ago I was on the floor in shock and disbelief, fear and sadness. I couldn't even have begun to realise how things would be now, exactly a year later, with a comedy show based on my first year with cancer from what I've written in this blog, with me being well enough to play myself, and to be having the time of my life doing it.
This week has started to go a little bit crazy, with interviews on radio and in the local newspaper, being recognised by a stranger because of the newspaper photo, my story featuring on websites, and even complete strangers twittering about it. People have been so enthusiastic and warmly supportive of what we're doing with the play, it's actually very humbling. I suppose it is a bit unusual, maybe there aren't that many funny plays about cancer performed by the person they are about, but I suppose cancer has made me see it differently. Having cancer has in some senses been liberating, I am now longer held back by what people might think or say, because it does give a sense of focus, a sense that time may be running out, and you have to live and enjoy and experience whatever comes your way.
The coming week is going to get progressively crazier still. There are several medical appointments, various appointments for the children, two nights' rehearsal, a stack of beyond urgent paperwork to get done and dusted, lines to learn, facial expressions to master to go with the lines I'm still learning, a very fancy and rather exciting reception with the Mayor of London, Boris Johnson, on Tuesday, and a dog to care for too.
The dog. Oh he is a naughty one. He's picture-box gorgeous to look at, and 80% of the time he is adorable, great fun, affectionate and lovely, but at 5 months he still has some very aggressive moments and still bites sometimes, which considering how big he is going to be, is a complete no-no,. I have had most of my lymph nodes removed from my arms, so I'm at a very high risk of any cut becoming seriously infected very quickly, which is a bit of a worry. We've had a dog trainer in, we attend dog obedience classes in the park every week, and next week, he is going to live with the trainer for 5 days, a sort of "doggy boarding school. We're doing everything by the book, being consistent and focussed on training, but he is a particularly lively and dominant little fella, so we haven't quite completely cracked this dog-owner malarkey yet. Maybe things will get better once he has his bits chopped off, and he really does happen to be probably the very best looking dog in the whole neighbourhood. Perhaps he just came with more personality and character than we were bargaining for, but in the end, hopefully that will mean he fits even more perfectly into this funny little family of mine.
Today is the first anniversary of my diagnosis. This time last year, like virtually everyone else who is told they have cancer, I never expected to still be alive a year later. Now that I understand so much more about breast cancer and its treatment, I can see how crazy that fear was, but at the time it was very real indeed. I can recall every tiny nanosecond of that day in full technicolour and bose surround sound, and in some ways it seems like only yesterday, and in others, it feels like it was hundreds of years ago.
Yesterday it was 34 years since my mum died, and again, some parts of that day are still so raw and real that I can almost feel and taste them, but in other ways it seems so long, long ago. It's funny how we measure our lives in easy-to-manage blocks of time and bestow certain feelings of sadness or happiness on certain dates of the year depending on what happened to us on corresponding dates in previous years. Of course I thought of my mum yesterday, and I thought of my diagnosis today, but I actually think of both my mum and my cancer everyday, so that's nothing special. If a year with cancer has taught me anything, I think it's taught me to grasp and cherish every moment of happiness whenever I can, with no guilt or fear whatsoever, providing it doesn't hurt anyone else, . So, despite the dates, I've had two very lovely days.
A year ago I was on the floor in shock and disbelief, fear and sadness. I couldn't even have begun to realise how things would be now, exactly a year later, with a comedy show based on my first year with cancer from what I've written in this blog, with me being well enough to play myself, and to be having the time of my life doing it.
This week has started to go a little bit crazy, with interviews on radio and in the local newspaper, being recognised by a stranger because of the newspaper photo, my story featuring on websites, and even complete strangers twittering about it. People have been so enthusiastic and warmly supportive of what we're doing with the play, it's actually very humbling. I suppose it is a bit unusual, maybe there aren't that many funny plays about cancer performed by the person they are about, but I suppose cancer has made me see it differently. Having cancer has in some senses been liberating, I am now longer held back by what people might think or say, because it does give a sense of focus, a sense that time may be running out, and you have to live and enjoy and experience whatever comes your way.
The coming week is going to get progressively crazier still. There are several medical appointments, various appointments for the children, two nights' rehearsal, a stack of beyond urgent paperwork to get done and dusted, lines to learn, facial expressions to master to go with the lines I'm still learning, a very fancy and rather exciting reception with the Mayor of London, Boris Johnson, on Tuesday, and a dog to care for too.
The dog. Oh he is a naughty one. He's picture-box gorgeous to look at, and 80% of the time he is adorable, great fun, affectionate and lovely, but at 5 months he still has some very aggressive moments and still bites sometimes, which considering how big he is going to be, is a complete no-no,. I have had most of my lymph nodes removed from my arms, so I'm at a very high risk of any cut becoming seriously infected very quickly, which is a bit of a worry. We've had a dog trainer in, we attend dog obedience classes in the park every week, and next week, he is going to live with the trainer for 5 days, a sort of "doggy boarding school. We're doing everything by the book, being consistent and focussed on training, but he is a particularly lively and dominant little fella, so we haven't quite completely cracked this dog-owner malarkey yet. Maybe things will get better once he has his bits chopped off, and he really does happen to be probably the very best looking dog in the whole neighbourhood. Perhaps he just came with more personality and character than we were bargaining for, but in the end, hopefully that will mean he fits even more perfectly into this funny little family of mine.
Sunday, 5 May 2013
Coke Floats & Chemo: Coke Floats & Chemo
Coke Floats & Chemo: Coke Floats & Chemo: Sometimes, being busy is the best medicine there is, and certainly this week, being rushed off my feet has meant that I've barely been a...
Coke Floats & Chemo
Sometimes, being busy is the best medicine there is, and certainly this week, being rushed off my feet has meant that I've barely been able to give this whole "will I live much longer or won't I" any head-space whatsoever. Obviously it's there, and I'm talking about it very openly with family and friends, but it hasn't been able to penetrate so that it's all I'm thinking about. Whether that's because, for the first time in my life, I'm being sensibly objective until I know all the facts, or whether it's because it is such a hugely big deal that I'm still in a sort of shock/denial phase I really can't tell. Anyhow, this week has been jam-packed, and a lot of the time I've been having quite a bit of fun.
Coke Floats & Chemo, the stage-play of the blog, has taken up oodles of time this week. all enormously enjoyable. I've spent most of the week handling publicity for the whole thing, and it's been a steep learning curve, but very rewarding. I wrote and sent out nearly 300 press releases, and this has generated some exciting interest already. We're being featured in the local paper as well as on a handful of websites promoting the Brighton Fringe. So now the photos are ready too, I'll be sending them out to the same mailing list.
To simplify things, I've renamed this blog to match, and I've also set up a Facebook Page entitled Coke Floats & Chemo as well. The Facebook page has news and photos about the show, as well as every blog post I've ever written. In time, I'm hoping to expand it so that it also contains very useful links to information and support for anyone with Breast Cancer and their family and friends, and also link it to other blogs by other women who are going through the same thing, so that eventually it becomes a useful resource site. It would really help if you can suggest any blogs or links I should include.
Here's the link to the Facebook Page https://www.facebook.com/
It's only 5 days old and it already has 49 "likes"! My friends are so supportive. I will now be posting each new blog on there as well as everywhere it already gets posted to.
So the whole PR thing has been a bit of an education. I'm a total novice at the whole thing, and Social Media is now such a major part of information exchange, that I really need to get my head around a whole load of concepts relatively new to me. I've more or less mastered Facebook and Twitter, but Stumbleupon, Tumblir, Pininterest and Google+ are still all beyond me, plus all the dozens of other things I haven't even heard of yet. Hopefully I'll have cracked it all in a week or so, but if anyone can suggest any advice or tips to make it all a bit easier to master, I'd be very grateful.
On top of all the PR stuff, we're had rehearsals too - it really is shaping up well, and hopefully will be entertaining enough to be able to still be able to go out in daylight afterwards without dying of humiliating embarrassment. Then again, that's probably a preferable dying method than the one that's likely to carry me away. At least I'm not expected to sing in the show.
Here are some of the publicity photos for Coke Floats & Chemo.
On Tuesday evening, Dave Roberts of Ridge Radio has very kindly invited Alice, Francesca, miniYvonne and I onto his programme, Music for Grown Ups, to talk about the show. We are all expecting to be thoroughly upstaged by mini-Yvonne, who is developing a very naughty side to her personality, which is becoming bolder and more outrageous the nearer we get to doing it for real on the 18th May. Here's the link, if you would like to listen live, but I think the intention is to upload the show so it will be available afterwards, too. http://www.ridgeradio.co.uk/
To finish, I just can't resist telling you about a really proud "Mummy Moment" I had last night. We went down to Horsham to see my youngest perform with the Savvy Young Company (the sister company of the Savvy Adult Company, our lot who are doing Coke Floats & Chemo). They are taking part in the National Theatre Connections Project, which is a very prestigious annual event, with ten new plays each being performed for the first time by 10 young drama groups around the country. The play they are doing is called "We Lost Elijah". The very best production of each play will get a once-in-a-lifetime opportunity to perform the play at the National Theatre. Now how cool would that be?!
Last night was a total triumph. The cast, all aged between 13 - 18, were just so professional, their timing was impeccable, and they had the audience in the palm of their hand. Believable, poignant and very funny word-perfect performances from everyone. They were just amazing. If they don't win, I really want to see whoever topped them, because I just can't see how that would be possible. It was also really surreal seeing my gorgeous baby-boy (OK so he's nearly 6 foot tall with a very deep voice, and nearly 16 years old) play the part of both a frighteningly aggressive rioter and a "dirty-old-man", when he is charming, kind and so far away from both those images in real life.
If we can aspire to be even a fraction as convincing as the Young Company was last night, I think we'll have done ourselves justice. If you want to see some photos, here's the link to the Savvy Theatre Company website http://www.savvytheatre.co.uk/ If you search through their pages and find a couple in masks, that's me and WM in disguise from a show we did a couple of years ago.
Over the next couple of posts, I'm hoping to include an update on Steve, our nearly-five-month-old puppy who must be the naughtiest dog on the planet, and if I can do so without ranting too much, I'll also fill you in on the less positive parts of this week - making frustratingly difficult phonecalls to our local council concerning my severely disabled son. Sometimes it feels like they have completed training courses in "How to make a very difficult set of circumstances a thousand times worse" or "How to make people who are at the very end of their coping abilities want to find a very tall building to jump off". Maybe that's all part of their latest cost-saving initiatives. Many thanks, London Borough of Sutton. Not everyone who works there; some, in fact probably most; are utterly lovely, but I unfortunately encountered a couple who really let their colleagues down this week.
Coke Floats & Chemo, the stage-play of the blog, has taken up oodles of time this week. all enormously enjoyable. I've spent most of the week handling publicity for the whole thing, and it's been a steep learning curve, but very rewarding. I wrote and sent out nearly 300 press releases, and this has generated some exciting interest already. We're being featured in the local paper as well as on a handful of websites promoting the Brighton Fringe. So now the photos are ready too, I'll be sending them out to the same mailing list.
To simplify things, I've renamed this blog to match, and I've also set up a Facebook Page entitled Coke Floats & Chemo as well. The Facebook page has news and photos about the show, as well as every blog post I've ever written. In time, I'm hoping to expand it so that it also contains very useful links to information and support for anyone with Breast Cancer and their family and friends, and also link it to other blogs by other women who are going through the same thing, so that eventually it becomes a useful resource site. It would really help if you can suggest any blogs or links I should include.
Here's the link to the Facebook Page https://www.facebook.com/
It's only 5 days old and it already has 49 "likes"! My friends are so supportive. I will now be posting each new blog on there as well as everywhere it already gets posted to.
So the whole PR thing has been a bit of an education. I'm a total novice at the whole thing, and Social Media is now such a major part of information exchange, that I really need to get my head around a whole load of concepts relatively new to me. I've more or less mastered Facebook and Twitter, but Stumbleupon, Tumblir, Pininterest and Google+ are still all beyond me, plus all the dozens of other things I haven't even heard of yet. Hopefully I'll have cracked it all in a week or so, but if anyone can suggest any advice or tips to make it all a bit easier to master, I'd be very grateful.
On top of all the PR stuff, we're had rehearsals too - it really is shaping up well, and hopefully will be entertaining enough to be able to still be able to go out in daylight afterwards without dying of humiliating embarrassment. Then again, that's probably a preferable dying method than the one that's likely to carry me away. At least I'm not expected to sing in the show.
Here are some of the publicity photos for Coke Floats & Chemo.
On Tuesday evening, Dave Roberts of Ridge Radio has very kindly invited Alice, Francesca, miniYvonne and I onto his programme, Music for Grown Ups, to talk about the show. We are all expecting to be thoroughly upstaged by mini-Yvonne, who is developing a very naughty side to her personality, which is becoming bolder and more outrageous the nearer we get to doing it for real on the 18th May. Here's the link, if you would like to listen live, but I think the intention is to upload the show so it will be available afterwards, too. http://www.ridgeradio.co.uk/
To finish, I just can't resist telling you about a really proud "Mummy Moment" I had last night. We went down to Horsham to see my youngest perform with the Savvy Young Company (the sister company of the Savvy Adult Company, our lot who are doing Coke Floats & Chemo). They are taking part in the National Theatre Connections Project, which is a very prestigious annual event, with ten new plays each being performed for the first time by 10 young drama groups around the country. The play they are doing is called "We Lost Elijah". The very best production of each play will get a once-in-a-lifetime opportunity to perform the play at the National Theatre. Now how cool would that be?!
Last night was a total triumph. The cast, all aged between 13 - 18, were just so professional, their timing was impeccable, and they had the audience in the palm of their hand. Believable, poignant and very funny word-perfect performances from everyone. They were just amazing. If they don't win, I really want to see whoever topped them, because I just can't see how that would be possible. It was also really surreal seeing my gorgeous baby-boy (OK so he's nearly 6 foot tall with a very deep voice, and nearly 16 years old) play the part of both a frighteningly aggressive rioter and a "dirty-old-man", when he is charming, kind and so far away from both those images in real life.
If we can aspire to be even a fraction as convincing as the Young Company was last night, I think we'll have done ourselves justice. If you want to see some photos, here's the link to the Savvy Theatre Company website http://www.savvytheatre.co.uk/ If you search through their pages and find a couple in masks, that's me and WM in disguise from a show we did a couple of years ago.
Over the next couple of posts, I'm hoping to include an update on Steve, our nearly-five-month-old puppy who must be the naughtiest dog on the planet, and if I can do so without ranting too much, I'll also fill you in on the less positive parts of this week - making frustratingly difficult phonecalls to our local council concerning my severely disabled son. Sometimes it feels like they have completed training courses in "How to make a very difficult set of circumstances a thousand times worse" or "How to make people who are at the very end of their coping abilities want to find a very tall building to jump off". Maybe that's all part of their latest cost-saving initiatives. Many thanks, London Borough of Sutton. Not everyone who works there; some, in fact probably most; are utterly lovely, but I unfortunately encountered a couple who really let their colleagues down this week.
Sunday, 28 April 2013
Adventures with breast cancer: Results Day
Adventures with breast cancer: Results Day: Finally I know the results of all the tests and investigations concerning the two spinal lesions. One is definitely not cancer, and one defi...
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