Wednesday, 31 October 2012
Adventures with breast cancer: Soapboxes and Cosmetics
Adventures with breast cancer: Soapboxes and Cosmetics: I'm just starting to feel human again, and it's only 5 days before my next chemo, when they change the cocktail to Taxotere which, by all ac...
Soapboxes and Cosmetics
I'm just starting to feel human again, and it's only 5 days before my next chemo, when they change the cocktail to Taxotere which, by all accounts, is an absolute killer. I stupidly googled all about it earlier today, and from being merely frightened I'm now simply terrified. Taxotere is made from the needles of Yew trees, which sounds fairly innocuous, even for this needle-phobe. However the list of side effects seems to be as tall as the Yew tree itself, and some of them are pretty scary indeed. It sounds very clever in the way that it works, though, by blocking the cancer cell's ability to divide and grow, and whatever nasty things it does to me over the next few weeks I'll be hoping that those cancer cells are getting an even more miserable time of it.
All I can do is shut my eyes, hold my nose and jump into the deep end and keep swimming til I surface again. I had a great piece of advice this week, which was to treat this whole treatment process just as if it were a job. Except there isn't a "handing in your notice" option.
Debbie and Anita came over today, both such upbeat, happy people, and both left-handed ladies just like me. Three left-handers all in one room on Halloween as well, eh, but without our broomsticks? Once upon a time we'd have been burnt at the stake which would have left the world a much less jolly place. They are both coming to my laughter taster session at Mencap in a couple of weeks' time - with both of them there I really won't have to work hard at all to get the room rolling about in fits of laughter, all in all, a lovely afternoon, even though they did both tell me off for googling far to much for my own good.
Yesterday, I must have been feeling better because yet another news item managed to wind me up completely. There is a new Government-backed report that is claiming that the routine mammogram screening programme is "over-diagnosing" a significant number of women. Lots of people will read this and think it means that they are "mis-diagnosing" loads of ladies. They are not. They are claiming that, of every woman who's life is saved by having treatment, there are 3 others who have all the treatment thrown at them, but would not have died if they hadn't had it. What they fail to make crystal clear, though, is that there is no way of telling which of those four women desperately needs that treatment. The whole report reads like a piece of non-news, a load of tosh, where they seem to be suggesting that playing Russian Roulette is fine, and let's not treat them. Even worse, they are suggesting that the women themselves decide if they think they are in that 75% percent who might not need treatment.
At the moment of diagnosis, and for several weeks afterwards, women diagnosed with breast cancer are in shock, denial and completely disorientated. To ask them to make that sort of decision will allow many to percieve that this is their "get out of jail" card. Who really wants to go through cancer treatment? At that point in any woman's life, the temptation to walk away and kid yourself that you'll be okay is overwhelming at the best of times. This report could cause countless women to turn there back on treatment, with disastrous consequences.
Headlines that state that mammograms are causing 75% over-diagnosis will be misunderstood by a huge number of the wider population. Going for a mammogram isn't exactly like having a slice of yummy cake, and many thousands of women already choose not to turn up for their screening appointments. No one wants to have cancer, and there is still an almost superstitious belief that "if I don't go, no one can tell me I've got cancer, so I won't have it". What really happens of course, is that if they do have it and don't get checked early enough, by the time they can't ignore it any longer it may be too late to treat effectively. Surely this silly message is going to feed into this fear, and deter many more thousands of women from taking part in the screening programme? I'm not cynical enough to actually believe that this message has been released to save thousands on the NHS budget, but I can see why many people are thinking like this.
My own case, I hope will act as a salutory case to anyone reading who may be thinking about not bothering to get checked. If I hadn't gone for my routine mammogram (and I was sorely tempted not to bother) they wouldn't have found the two primary cancers, totally unrelated different types, one in each breast. Even on the day of surgery, the surgeon couldn't feel either of them, they were so deeply buried. The scans had shown them to both be tiny, very early stage, that hadn't yet spread. After two operations, including a mastectomy on one side, they found that both had spread, one of them was a whopping 14.4 centimetre spherical ball, and that cancer was already in 9 of my lymph nodes. I am now undergoing treatment with no guarantees of survival, yet I am in with a chance of beating this. If I hadn't gone, I would still be in blissful ignorance, but the cancers by now would have been spreading to loads of other organs, and within a few months I would have become incredibly ill, and it would have been too late to do much about it. Please please please never put off a mammogram, or any other cancer screening you might be offered.
Ranting over, but at least I'm well enough at the moment to stand on a soapbox. Well enough to be planning lunch tomorrow with WM and his sister and brother-in-law, well enough to have nearly contemplated going to the theatre tonight, and certainly well enough to watch a load of rubbish telly for the rest of the evening while WM loses his inhibitions shouting at the Chelsea/Man U match on the other TV.
Something else happened this week that made me feel a whole load better. I had probably the best hospital appointment ever - a place on the "Look Good, Feel Better" workshop on Monday. It's a charity specially for women with cancer, run by the cosmetics industry, and we were taught how to really use face products and make-up properly, with tricks of the trade about how to pencil in our missing eyebrows, and tone done the chemo-related sideburns that are developing when the hair is falling out of all the places it's supposed to be. For someone like me, who has studiously neglected any form of beauty treatment and avoids looking at my face in the mirror to prevent both fear and depression, this was a totally strange, but strangely pleasant experience. I'm now exfoliating, toning, cleansing and moisturising like the best of them. There were 8 of us in the workshop, with 5 really encouraging beauticians, all volunteers, doing a great job of making us feel like we count and matter, and can actually look quite reasonable most of the time.
There were two "best bits" for me. One of the beauticians is trained in wig-care, and he really kindly offered to cut the fringe for me so it doesn't go in my eyes all the time anymore. This means I can double the length of time I can wear it comfortably now. The other great treat was the goody bag, a huge cosmetics bag stuffed full of the sort of products I could never normally even think of being able to afford, and some of these things I wouldn't even have known how to use beforehand. It was also quite liberating to spend a couple of hours in a room with other bald ladies, and to feel totally OK and accepted. By the time it was ready to leave, my face was completely madeover, and even to my critical eye it seemed passable.
So, now there are even more reasons not to tackle that housework of mine, because I'll need to spend so much time at the bathroom mirror to keep up the good work!
All I can do is shut my eyes, hold my nose and jump into the deep end and keep swimming til I surface again. I had a great piece of advice this week, which was to treat this whole treatment process just as if it were a job. Except there isn't a "handing in your notice" option.
Debbie and Anita came over today, both such upbeat, happy people, and both left-handed ladies just like me. Three left-handers all in one room on Halloween as well, eh, but without our broomsticks? Once upon a time we'd have been burnt at the stake which would have left the world a much less jolly place. They are both coming to my laughter taster session at Mencap in a couple of weeks' time - with both of them there I really won't have to work hard at all to get the room rolling about in fits of laughter, all in all, a lovely afternoon, even though they did both tell me off for googling far to much for my own good.
Yesterday, I must have been feeling better because yet another news item managed to wind me up completely. There is a new Government-backed report that is claiming that the routine mammogram screening programme is "over-diagnosing" a significant number of women. Lots of people will read this and think it means that they are "mis-diagnosing" loads of ladies. They are not. They are claiming that, of every woman who's life is saved by having treatment, there are 3 others who have all the treatment thrown at them, but would not have died if they hadn't had it. What they fail to make crystal clear, though, is that there is no way of telling which of those four women desperately needs that treatment. The whole report reads like a piece of non-news, a load of tosh, where they seem to be suggesting that playing Russian Roulette is fine, and let's not treat them. Even worse, they are suggesting that the women themselves decide if they think they are in that 75% percent who might not need treatment.
At the moment of diagnosis, and for several weeks afterwards, women diagnosed with breast cancer are in shock, denial and completely disorientated. To ask them to make that sort of decision will allow many to percieve that this is their "get out of jail" card. Who really wants to go through cancer treatment? At that point in any woman's life, the temptation to walk away and kid yourself that you'll be okay is overwhelming at the best of times. This report could cause countless women to turn there back on treatment, with disastrous consequences.
Headlines that state that mammograms are causing 75% over-diagnosis will be misunderstood by a huge number of the wider population. Going for a mammogram isn't exactly like having a slice of yummy cake, and many thousands of women already choose not to turn up for their screening appointments. No one wants to have cancer, and there is still an almost superstitious belief that "if I don't go, no one can tell me I've got cancer, so I won't have it". What really happens of course, is that if they do have it and don't get checked early enough, by the time they can't ignore it any longer it may be too late to treat effectively. Surely this silly message is going to feed into this fear, and deter many more thousands of women from taking part in the screening programme? I'm not cynical enough to actually believe that this message has been released to save thousands on the NHS budget, but I can see why many people are thinking like this.
My own case, I hope will act as a salutory case to anyone reading who may be thinking about not bothering to get checked. If I hadn't gone for my routine mammogram (and I was sorely tempted not to bother) they wouldn't have found the two primary cancers, totally unrelated different types, one in each breast. Even on the day of surgery, the surgeon couldn't feel either of them, they were so deeply buried. The scans had shown them to both be tiny, very early stage, that hadn't yet spread. After two operations, including a mastectomy on one side, they found that both had spread, one of them was a whopping 14.4 centimetre spherical ball, and that cancer was already in 9 of my lymph nodes. I am now undergoing treatment with no guarantees of survival, yet I am in with a chance of beating this. If I hadn't gone, I would still be in blissful ignorance, but the cancers by now would have been spreading to loads of other organs, and within a few months I would have become incredibly ill, and it would have been too late to do much about it. Please please please never put off a mammogram, or any other cancer screening you might be offered.
Ranting over, but at least I'm well enough at the moment to stand on a soapbox. Well enough to be planning lunch tomorrow with WM and his sister and brother-in-law, well enough to have nearly contemplated going to the theatre tonight, and certainly well enough to watch a load of rubbish telly for the rest of the evening while WM loses his inhibitions shouting at the Chelsea/Man U match on the other TV.
Something else happened this week that made me feel a whole load better. I had probably the best hospital appointment ever - a place on the "Look Good, Feel Better" workshop on Monday. It's a charity specially for women with cancer, run by the cosmetics industry, and we were taught how to really use face products and make-up properly, with tricks of the trade about how to pencil in our missing eyebrows, and tone done the chemo-related sideburns that are developing when the hair is falling out of all the places it's supposed to be. For someone like me, who has studiously neglected any form of beauty treatment and avoids looking at my face in the mirror to prevent both fear and depression, this was a totally strange, but strangely pleasant experience. I'm now exfoliating, toning, cleansing and moisturising like the best of them. There were 8 of us in the workshop, with 5 really encouraging beauticians, all volunteers, doing a great job of making us feel like we count and matter, and can actually look quite reasonable most of the time.
There were two "best bits" for me. One of the beauticians is trained in wig-care, and he really kindly offered to cut the fringe for me so it doesn't go in my eyes all the time anymore. This means I can double the length of time I can wear it comfortably now. The other great treat was the goody bag, a huge cosmetics bag stuffed full of the sort of products I could never normally even think of being able to afford, and some of these things I wouldn't even have known how to use beforehand. It was also quite liberating to spend a couple of hours in a room with other bald ladies, and to feel totally OK and accepted. By the time it was ready to leave, my face was completely madeover, and even to my critical eye it seemed passable.
So, now there are even more reasons not to tackle that housework of mine, because I'll need to spend so much time at the bathroom mirror to keep up the good work!
Thursday, 25 October 2012
Adventures with breast cancer: Laughing, fundraising, scriptwriting and fog
Adventures with breast cancer: Laughing, fundraising, scriptwriting and fog: The worst part of chemotherapy for me is the total, bone-deep exhaustion, that just makes everything seem like such hard work that I end up ...
Laughing, fundraising, scriptwriting and fog
The worst part of chemotherapy for me is the total, bone-deep exhaustion, that just makes everything seem like such hard work that I end up doing virtually nothing, then constantly beat myself up about it. It's like being overwhelmed by a blanket of thick fog, and to then try and reach out beyond the fog is like climbing Everest, backwards, in ballet shoes, but harder. Staring into the mid-distance is about all I'm good for at the moment, which is incredibly frustrating, when there are so many things just not getting done.
Never mind, I do have breast cancer, and that means people are generally ever so forgiving. Hopefully it won't always be like this, but all I want to do all day is crawl back into bed, but don't, mostly for two reasons. Firstly I just don't have the energy to make the go-back-to-bed decision, and secondly, when I do managed to get back under the duvet, all I do is worry about everything that isn't getting done.
I really shouldn't be moaning about the chemotherapy side efffects, because the side effects of not having chemotherapy are a great deal worse, with death being one of them. It's the cancer treatment, rather than the cancer itself that makes you feel like pants. If I have all this treatment and still end up popping my clogs, I have totally promised myself that I will come back and haunt whoever is was who invented chemotherapy. They won't be the only ones..... I can have a lot of fun compiling my "people I intend to haunt" list. Please let me know if there's anyone you'd like me to add to the list.
Last night I watched a TV programme which really made my list grow longer - all brand new, young junior doctors. They were all probably lovely, well meaning lads and lasses, with their hearts in the right places, but their arrogance and their ability to patronise were just staggeringly shocking. The documentary, following 8 doctors in their first week out of medical school did seem to focus on a particular sore-point of my own, putting canulas in and taking blood out, but their lack of understanding, patience and compassion was quite simply apppalling. Their priorities seemed to be more about making their mark and earning the respect of their new colleagues than really beginning to understand how their patients felt. There were moments when I wanted to shout at the telly, advocating for the poor patients being used as practice guinea pigs by these youngsters who really didn't know what they were doing yet. One poor old lady who was just at the end of her tether at being used like a pincushion, refused any more. She was later referred to as being "difficult and princessy", which really made me quite cross.
I have to say that , almost without exception, all the doctors I've met in the cancer unit I attend have been incredibly sympathetic about my needle phobia, so I think I'm very lucky indeed. I wonder what they really say to each other, and in my case, I'm sure some of them might be tempted to use significantly stronger adjectives than "difficult and princessy". Unless of course it was Mr Lovely, who I'm sure, wouldn't ever say anything negative about anybody.
Despite the tiredness, I have got a couple of rather exciting projects on the go at the moment, one, of course, being to do lots of thinking about how to turn this blog into a play script, because a dramatized version will be performed next May at the Brighton Fringe. In my mind there is only one casting option with enough charm and warmth to portray the lovely Mr Lovely, but I doubt we could afford George Clooney.
The other exciting project got off the ground only yesterday. Our local Mencap organisation needs to raise £20,000 for a new sensory room. Mencap is an amazing place, offering fabulous opportunities to local learning disabled children and adults. My very learning disabled son, Toby, has been a regular there since he was only 5 years old, and I can truly say that it is probably his favourite place on the planet. The whole ethos just centres around fun and nothing is too much trouble for them if it means raising yet another smile or giggle from some of our most vulnerable people.
Although National Mencap is a high-profile and very respected charity, each of the local branches are independent, separate, stand-alone charities, responsible entirely for their own fund-raising. They just don't have the clout or the appeal of other charities, and sadly, not everyone can identify with learning disability in the same way they can with many other charities, so donations don't exactly come in thick and fast.
Just a few weeks before I was diagnosed with breast cancer, I trained as a Laughter Yoga Leader, so I haven't been able to really focus on building up a laughter business. I do sessions at home for friends and family on an informal basis, but as far as organising venues and running regular classes goes, there just hasn't been the energy to even think that far ahead.
Yesterday I met with two of the local Mencap managers, and offered to run a series of Laughter Yoga sessions on their premises with all the proceeds going to the sensory room appeal. There was so much good will and enthusiasm, and we have a taster already booked for next month, carefully timed around my best chemo days, with a full programme of sessions to run straight after Christmas. I am so excited! It is so nice to still get on with other things that don't have "I have cancer" running right through the middle, and it will be brilliant to be able to contribute to an organisation that have really supported my family over the years. They are doing all the publicity and organising the room, all I have to do is turn up and run a session. We also talked about me running sessions with their learning disabled clients, which could be so rewarding, and maybe even working with local care homes. As a really thoughtful gesture, their Fundraising Manager has even offered to help me get started properly once I'm finished with treatment and the time is right. Will that ever happen??! Of course it will!
We'll be asking for small donations of between £3.00 and £5.00 for each session, so if you think you'd like to contribute something but can't make the sessions themselves, even a few pennies would help tremendously. Here's a link to their "Just Giving" page:
So with scriptwriting and laughtering, at least I won't have too much time to dwell on boring stuff like having cancer. Cancer does get very boring indeed and it does seem to go on for flipping ever. It's OK though, because right now I just don't have enough energy for too much excitement, so boring sort of suits me right down to the ground.
Never mind, I do have breast cancer, and that means people are generally ever so forgiving. Hopefully it won't always be like this, but all I want to do all day is crawl back into bed, but don't, mostly for two reasons. Firstly I just don't have the energy to make the go-back-to-bed decision, and secondly, when I do managed to get back under the duvet, all I do is worry about everything that isn't getting done.
I really shouldn't be moaning about the chemotherapy side efffects, because the side effects of not having chemotherapy are a great deal worse, with death being one of them. It's the cancer treatment, rather than the cancer itself that makes you feel like pants. If I have all this treatment and still end up popping my clogs, I have totally promised myself that I will come back and haunt whoever is was who invented chemotherapy. They won't be the only ones..... I can have a lot of fun compiling my "people I intend to haunt" list. Please let me know if there's anyone you'd like me to add to the list.
Last night I watched a TV programme which really made my list grow longer - all brand new, young junior doctors. They were all probably lovely, well meaning lads and lasses, with their hearts in the right places, but their arrogance and their ability to patronise were just staggeringly shocking. The documentary, following 8 doctors in their first week out of medical school did seem to focus on a particular sore-point of my own, putting canulas in and taking blood out, but their lack of understanding, patience and compassion was quite simply apppalling. Their priorities seemed to be more about making their mark and earning the respect of their new colleagues than really beginning to understand how their patients felt. There were moments when I wanted to shout at the telly, advocating for the poor patients being used as practice guinea pigs by these youngsters who really didn't know what they were doing yet. One poor old lady who was just at the end of her tether at being used like a pincushion, refused any more. She was later referred to as being "difficult and princessy", which really made me quite cross.
I have to say that , almost without exception, all the doctors I've met in the cancer unit I attend have been incredibly sympathetic about my needle phobia, so I think I'm very lucky indeed. I wonder what they really say to each other, and in my case, I'm sure some of them might be tempted to use significantly stronger adjectives than "difficult and princessy". Unless of course it was Mr Lovely, who I'm sure, wouldn't ever say anything negative about anybody.
Despite the tiredness, I have got a couple of rather exciting projects on the go at the moment, one, of course, being to do lots of thinking about how to turn this blog into a play script, because a dramatized version will be performed next May at the Brighton Fringe. In my mind there is only one casting option with enough charm and warmth to portray the lovely Mr Lovely, but I doubt we could afford George Clooney.
The other exciting project got off the ground only yesterday. Our local Mencap organisation needs to raise £20,000 for a new sensory room. Mencap is an amazing place, offering fabulous opportunities to local learning disabled children and adults. My very learning disabled son, Toby, has been a regular there since he was only 5 years old, and I can truly say that it is probably his favourite place on the planet. The whole ethos just centres around fun and nothing is too much trouble for them if it means raising yet another smile or giggle from some of our most vulnerable people.
Although National Mencap is a high-profile and very respected charity, each of the local branches are independent, separate, stand-alone charities, responsible entirely for their own fund-raising. They just don't have the clout or the appeal of other charities, and sadly, not everyone can identify with learning disability in the same way they can with many other charities, so donations don't exactly come in thick and fast.
Just a few weeks before I was diagnosed with breast cancer, I trained as a Laughter Yoga Leader, so I haven't been able to really focus on building up a laughter business. I do sessions at home for friends and family on an informal basis, but as far as organising venues and running regular classes goes, there just hasn't been the energy to even think that far ahead.
Yesterday I met with two of the local Mencap managers, and offered to run a series of Laughter Yoga sessions on their premises with all the proceeds going to the sensory room appeal. There was so much good will and enthusiasm, and we have a taster already booked for next month, carefully timed around my best chemo days, with a full programme of sessions to run straight after Christmas. I am so excited! It is so nice to still get on with other things that don't have "I have cancer" running right through the middle, and it will be brilliant to be able to contribute to an organisation that have really supported my family over the years. They are doing all the publicity and organising the room, all I have to do is turn up and run a session. We also talked about me running sessions with their learning disabled clients, which could be so rewarding, and maybe even working with local care homes. As a really thoughtful gesture, their Fundraising Manager has even offered to help me get started properly once I'm finished with treatment and the time is right. Will that ever happen??! Of course it will!
We'll be asking for small donations of between £3.00 and £5.00 for each session, so if you think you'd like to contribute something but can't make the sessions themselves, even a few pennies would help tremendously. Here's a link to their "Just Giving" page:
http://www.justgiving.com/suttonmencap
Friday, 19 October 2012
Adventures with breast cancer: Handbags, happiness, girls and cars
Adventures with breast cancer: Handbags, happiness, girls and cars: Yesterday, when I posted the episode called "Eating Toast and Crossing Fingers", the techno gremlins got in the way of uploading the photos ...
Handbags, happiness, girls and cars
Yesterday, when I posted the episode called "Eating Toast and Crossing Fingers", the techno gremlins got in the way of uploading the photos I wanted to include. OK, maybe it wasn't the gremlins, maybe it was me, chemo-brain yesterday made even joined up thinking beyond impossible.
So, here they are now
It might not be the prettiest handbag in the world, but it must be the biggest, and will come in very useful when I want to crawl inside it and hide instead of having my next chemo.
So I wasn't well enough to join them in the end, but I was definitely there in spirit. I just think this is a really happy photo of the team.
Something else that's really made my week this week is that my blog has been posted on a really lovely website in the States. I wondered why the readership had suddenly exploded Stateside last week, and then I had a really warm message from Charlene Bowers, who runs Bowers Motorsports. Charlene has decided to devote her website to Breast Cancer Awareness month, and she has really researched the subject very well, so that her website has a lot of very useful information about Breast Cancer, and some really helpful links for more information. Every day, she has a different breast cancer story, and I'm the 11th October feature. It's very reassuring to know that there are people out there who care enough to bang the drum for all of us who are dealing with this wretched disease, and if you get a chance, please have a look at her site - in between the narrative are loads of amazing photos of bright pink cars to die for! Here's the link :-
http://bowermedia.com/2012/10/a-month-of-pink/
So, here they are now
 | ||||
| My new bargain handbag bought during chemo at the hospital on Monday. |
 | |
| The Laughter Yoga girls, Lotte, Heidi, Carolina, Jo, Heather and Ruth, in the Alan Titchmarsh Green Room filming the Happiness show to be broadcast on 8th November |
Something else that's really made my week this week is that my blog has been posted on a really lovely website in the States. I wondered why the readership had suddenly exploded Stateside last week, and then I had a really warm message from Charlene Bowers, who runs Bowers Motorsports. Charlene has decided to devote her website to Breast Cancer Awareness month, and she has really researched the subject very well, so that her website has a lot of very useful information about Breast Cancer, and some really helpful links for more information. Every day, she has a different breast cancer story, and I'm the 11th October feature. It's very reassuring to know that there are people out there who care enough to bang the drum for all of us who are dealing with this wretched disease, and if you get a chance, please have a look at her site - in between the narrative are loads of amazing photos of bright pink cars to die for! Here's the link :-
http://bowermedia.com/2012/10/a-month-of-pink/
Thursday, 18 October 2012
Adventures with breast cancer: Eating toast and crossing fingers
Adventures with breast cancer: Eating toast and crossing fingers: Well, I've just eaten a piece of toast, my first food for over 48 hours, and I'm hoping against hope it stays down. Writing this is the perf...
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