Showing posts with label blog. Show all posts
Showing posts with label blog. Show all posts
Tuesday, 1 April 2014
Coke Floats & Chemo: Being a cancer patient
Coke Floats & Chemo: Being a cancer patient: Today I was a patient, and I'm just not any good at it. I hate it, loathe it and although outwardly I'm good at giving the right imp...
Being a cancer patient
Today I was a patient, and I'm just not any good at it. I hate it, loathe it and although outwardly I'm good at giving the right impression of stoical gratitude and forebearance, inside I'm desperately trying to prevent my true feelings of stroppy petulance leaking out all over the place.
Mostly I can deal with it, tune it out, get on with it and accept the whole package of being a patient with a lot more graciousness than I felt today, but sometimes, just sometimes, it really gets to me and I want to stop playing this game, this lottery game of fear and uncertainty called cancer. Then I remember that this is just the way it is, there won't ever be a way to get off this particular merry-go-round, and life is a bitch.
I'm normally much better at tackling things than I am today, I don't normally do low, I don't usually let things get to me like this. It wasn't anyone's fault. The hospital staff were perfectly pleasant, in fact the Consultant I saw was completely lovely, and even gave me some really encouraging news. It was me. Today I struggled to do positive, happy and upbeat, I failed dismally at looking on the bright side or finding something absurd about the whole thing to laugh at, I just didn't do the whole patient thing well at all.
It was a test day rather than a treatment day. I was with the clinician who conducted the test for nearly an hour, in very close, bodily contact as they have to dig deeply into my flesh with a probe and drag it to various points, each time digging harder until I wanted to scream with the pain. Maybe I'm just a wuss. I was never told her name, even though she knew mine. I had to undress, and she couldn't find the surgical gowns to at least give a pretence to modesty and dignity. I was half-naked, revealing the ugly disfiguring shark-bite scar where a breast used to be, while she rummaged in cupboards looking for the missing gowns. That hideous twelve-inch scar that scooped all the flesh out right down to the breastbone and rib-cage that even now, nearly two years after surgery, I can't face in the mirror without dissolving into flood of tears.
Eventually I was handed a gown, but by then it was too late, I would have to spend the next nearly-an-hour swallowing hard to stop those wretched tears from revealing my true vulnerability. I had to lie, stock-still, on the bed, all the time trying to tune out the joint pain that wanted to tear me apart. Hips, knees, back, elbows, wrists, knuckles, they all wanted a pain party today. My surgery has left a legacy of gnawing pins and needles and numbness in both arms and fingers, which was made worse by the permanent nerve damage caused by chemotherapy. Lying still for what seems like forever means the pins and needles fizzle away like crazy until it feels I'm on fire. I began to think I would never be able to move again. Maybe I've just got a low pain threshold.
Every now and again, I was asked to take in a slow deep breath and hold it. It would be so helpful if clinicians would remember to tell you when it's OK to breathe out again, but they often forget. Today I thought I was going to suffocate several times over. There were curtains around the bed, but they didn't quite meet in the middle, and directly opposite there were staff lockers, and it must have been staff break time, with me and my scar providing the peep-show entertainment.
Normally, I manage to keep a perspective on things, normally I just remind myself how lucky and blessed I am to live in a country with free health-care, and at a time when the treatments on offer will keep me alive for longer than has ever been possible before. Not today. Today I was pissed-off, resentful, miserable and withdrawn.
Being a patient is so much more than just turning up and letting them do whatever has to be done in terms of tests and treatments. The psychology is complex, and there is a whole set of assumptions and expectations that you feel compelled to conform to, even when you really don't want to. I'm a patient, therefore I'm expected to be weak, passive, willing to co-operate, grateful, gracious and submissive. As a patient it's really hard to hold on to your identity, personality, dignity and privacy. It feels like I'm reduced to a hospital number who has to be processed. It really doesn't matter how kind, compassionate, caring and sensitive the staff are, it's almost impossible to be "me" when I'm with them.
It's the same in the outside world. Having cancer, particularly the incurable variety that I've got, inevitably sets you apart from everyone else. It's so easy to become defined by cancer, to let who you really are to be squashed and crushed by other people's reactions. I've spent the past nearly two years fighting against these stereotypes, and I've done it fairly successfully so that people know that the "me" is still alive and kicking and living life to the fullest.
I've kept a blog, starred in the Stage Play of my cancer story, written a book, spoken at conferences, run Laughter Yoga sessions, and kept countless other interests and activities going strong, all at least partly so I remain much more than just a person with cancer. People sometimes tell me I'm marvellous, inspiring, courageous and brave, but I so am not any of those things. I just don't want to be written off, side-lined, ignored, depersonalised or reduced to a pathetic shadow of a person. I want to be engaged, dancing, laughing, involved, enmeshed in life, because that way, I'll stay alive in the only way that matters. I don't want half a life, I don't want to be passive and poorly and get smothered in sympathy. I want to be me.
Sometimes, just sometimes, the facade drops and I'm left exposed, so exposed that even I have to see what's really going on. I have cancer. It's incurable. Hospital tests and treatments are now, and will always be an integral part of my lifestyle until the day I die.
Cancer has robbed me of energy, cancer brings me low when I look at the To Do list and the dozens of little tasks that have been left undone around the house for months, and the admin mountain and the washing and the keeping the kitchen and bathroom clean, and I know I just can't do it all any more. The exhaustion. The bone-tiredness that descends like a cloud and I fight it like hell. The running on empty. Cancer has taken so much and will continue to want more and more. I will not let it take away the "me" though. I will not be crushed under the weight of this awful disease.
I will not be patient, even though I have to learn to be a patient. I doubt I'll ever be a good one though.
Mostly I can deal with it, tune it out, get on with it and accept the whole package of being a patient with a lot more graciousness than I felt today, but sometimes, just sometimes, it really gets to me and I want to stop playing this game, this lottery game of fear and uncertainty called cancer. Then I remember that this is just the way it is, there won't ever be a way to get off this particular merry-go-round, and life is a bitch.
I'm normally much better at tackling things than I am today, I don't normally do low, I don't usually let things get to me like this. It wasn't anyone's fault. The hospital staff were perfectly pleasant, in fact the Consultant I saw was completely lovely, and even gave me some really encouraging news. It was me. Today I struggled to do positive, happy and upbeat, I failed dismally at looking on the bright side or finding something absurd about the whole thing to laugh at, I just didn't do the whole patient thing well at all.
It was a test day rather than a treatment day. I was with the clinician who conducted the test for nearly an hour, in very close, bodily contact as they have to dig deeply into my flesh with a probe and drag it to various points, each time digging harder until I wanted to scream with the pain. Maybe I'm just a wuss. I was never told her name, even though she knew mine. I had to undress, and she couldn't find the surgical gowns to at least give a pretence to modesty and dignity. I was half-naked, revealing the ugly disfiguring shark-bite scar where a breast used to be, while she rummaged in cupboards looking for the missing gowns. That hideous twelve-inch scar that scooped all the flesh out right down to the breastbone and rib-cage that even now, nearly two years after surgery, I can't face in the mirror without dissolving into flood of tears.
Eventually I was handed a gown, but by then it was too late, I would have to spend the next nearly-an-hour swallowing hard to stop those wretched tears from revealing my true vulnerability. I had to lie, stock-still, on the bed, all the time trying to tune out the joint pain that wanted to tear me apart. Hips, knees, back, elbows, wrists, knuckles, they all wanted a pain party today. My surgery has left a legacy of gnawing pins and needles and numbness in both arms and fingers, which was made worse by the permanent nerve damage caused by chemotherapy. Lying still for what seems like forever means the pins and needles fizzle away like crazy until it feels I'm on fire. I began to think I would never be able to move again. Maybe I've just got a low pain threshold.
Every now and again, I was asked to take in a slow deep breath and hold it. It would be so helpful if clinicians would remember to tell you when it's OK to breathe out again, but they often forget. Today I thought I was going to suffocate several times over. There were curtains around the bed, but they didn't quite meet in the middle, and directly opposite there were staff lockers, and it must have been staff break time, with me and my scar providing the peep-show entertainment.
Normally, I manage to keep a perspective on things, normally I just remind myself how lucky and blessed I am to live in a country with free health-care, and at a time when the treatments on offer will keep me alive for longer than has ever been possible before. Not today. Today I was pissed-off, resentful, miserable and withdrawn.
Being a patient is so much more than just turning up and letting them do whatever has to be done in terms of tests and treatments. The psychology is complex, and there is a whole set of assumptions and expectations that you feel compelled to conform to, even when you really don't want to. I'm a patient, therefore I'm expected to be weak, passive, willing to co-operate, grateful, gracious and submissive. As a patient it's really hard to hold on to your identity, personality, dignity and privacy. It feels like I'm reduced to a hospital number who has to be processed. It really doesn't matter how kind, compassionate, caring and sensitive the staff are, it's almost impossible to be "me" when I'm with them.
It's the same in the outside world. Having cancer, particularly the incurable variety that I've got, inevitably sets you apart from everyone else. It's so easy to become defined by cancer, to let who you really are to be squashed and crushed by other people's reactions. I've spent the past nearly two years fighting against these stereotypes, and I've done it fairly successfully so that people know that the "me" is still alive and kicking and living life to the fullest.
I've kept a blog, starred in the Stage Play of my cancer story, written a book, spoken at conferences, run Laughter Yoga sessions, and kept countless other interests and activities going strong, all at least partly so I remain much more than just a person with cancer. People sometimes tell me I'm marvellous, inspiring, courageous and brave, but I so am not any of those things. I just don't want to be written off, side-lined, ignored, depersonalised or reduced to a pathetic shadow of a person. I want to be engaged, dancing, laughing, involved, enmeshed in life, because that way, I'll stay alive in the only way that matters. I don't want half a life, I don't want to be passive and poorly and get smothered in sympathy. I want to be me.
Sometimes, just sometimes, the facade drops and I'm left exposed, so exposed that even I have to see what's really going on. I have cancer. It's incurable. Hospital tests and treatments are now, and will always be an integral part of my lifestyle until the day I die.
Cancer has robbed me of energy, cancer brings me low when I look at the To Do list and the dozens of little tasks that have been left undone around the house for months, and the admin mountain and the washing and the keeping the kitchen and bathroom clean, and I know I just can't do it all any more. The exhaustion. The bone-tiredness that descends like a cloud and I fight it like hell. The running on empty. Cancer has taken so much and will continue to want more and more. I will not let it take away the "me" though. I will not be crushed under the weight of this awful disease.
I will not be patient, even though I have to learn to be a patient. I doubt I'll ever be a good one though.
If you’d like to buy a copy of Yvonne Newbold's book, “The Special Parent’s Handbook”, here’s the link to the Amazon Page:
If no link appears it may be due to your AdBlock settings
Thursday, 25 October 2012
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
Subscribe to:
Posts (Atom)