In preparation for the 6-week cancer treatment my dad starts today, I dug this book out from my hoard. Having gone through an era of psychotherapy (make than an eon, or an aeon if you're particular) I was familiar with a lot of the information on panic and anxiety related disorders, so tended to skim through those parts. But I also found some wonderfully inspiring words that I must save here, to read and read again. Here are some excerpts, and if you like what you read then please do go ahead and get the book. Lots of useful stuff for anyone who has a panic/anxiety disorder. Of course, I always recommend 2nd hand!! Let's re-use the old ones before the publishers have to go out and cut down more trees for new editions!
" .. The need to be in control is the main obstacle towards recovery. Recovery means the opposite. Recovery means we need to let go of the need to be in control. We don't realise our overwhelming need to be in control perpetuates our disorder ..
.. The difference between panic disorder and recovery means we have taken the power back and are no longer afraid of the attack or anxiety. We have shifted the power balance. There are no more 'what ifs', but instead we have developed an attitude of 'so what' ..
.. A major obstacle to taking back the power is the lack of compassion we have for ourselves .. we negate and invalidate our own suffering and pain. Most of us cannot see, let alone acknowledge or appreciate our own strength and courage, which has brought us thus far ..
.. We never take time to examine our thoughts. We don't even realise we can. We never watch the internal world of our thoughts as it spins this way and thought. We react to our thoughts without realising they are actually separate fleeting moments in time. We don't see this separateness. Instead, we believe we have no power over the continual progression of these thoughts, and the feelings caused by them .. We need to be in control of ourselves and our environment, yet the only thing we do not control is our thinking. We need to change this by letting go of the overall need to be in control, and control our thinking ..
.. It isn't the symptoms which create the fear. The way we think creates the fear, which creates the symptoms, which creates further thoughts, which creates further fear and the cycle continues ..
.. we cannot let the fear of what other people think get in our way of full recovery. If our face turns bright red, then our face turns bright red. If we feel faint, then sit down on a chair, on the floor, on the footpath, if need be. If we vomit or have an attack of diarrhoea, then we vomit or have an attack of diarrhoea. Let it happen. When we let it happen, we turn off the adrenalin and it will be over as quick as it starts. We will not have to waste all of our energy trying to keep it under control and thereby turning on more adrenalin. Our mental health needs to be more important than other peoples' opinions ..
.. Learning to be patient with ourselves is learning to be kind to ourselves. Being kind to ourselves means we are not putting ourselves under any further unnecessary stress ..
.. Most people do not give their recovery priority. Although everyone wants to recover, there can seem a million more important things to be done first. Our recovery has to become the most important thing in our life. Our loyalty has to be to ourselves. This can be very difficult for many of us because we feel we are being selfish in putting our own needs first ..
.. Making allowances is not giving in; it is working with the disorder. Doing nothing is giving in ..
.. Begin again. These two words can mean so much .. If we feel that we are not making progress, if we feel that some our attempts didn't quite work out the way we would have liked, let them go and begin again ..
.. Our ultra-sensitivity also increases the sense of guilt we feel towards our families because we can't do everything we would like to do. We need to be aware of the extra stress caused by this. We can spend a week worrying and feeling guilty over one small incident which we think of as a failure. Guilt only increases our anxiety. It keeps us locked into the cycle. We need to let it go, so we can move forward to recovery and to the time when we will be able to do everything we haven't been able to do ..
.. Despite the image we had of ourselves, we have always known that we never felt any sense of who we are. We never had a real sense of self. This essential element was always lacking in our lives, and it is from this that our feelings of inadequacy, lack of confidence and lack of self-esteem arose ..
.. Over the years we built the image of who we thought we should be. We lived our lives with an uneasy feeling that we were not who we appeared to be. If we were not who we appeared to be, then who were we? We didn't know. We were never able to answer the question ..
.. The seemingly inherent negativity of the disorder can actually be the most positive experience of our life. How many other people are given such an opportunity? The disorder has done so much of the hard work for us. It has stripped away the image of who we thought we should be, and has returned us to the basis of who we could be ..
.. Life isn't just about growing up, having a career, getting married, having children and so on. These are things we do during life, but they are not life. Life is continual evolution and development ..
.. We begin to see that responsibility for our peace and happiness is ours, and ours alone. We cannot shift the responsibility of ourselves to other people or other factors ..
.. As we become aware of these insights we begin to see we are letting go of more than the disorder. Life begins to take on a different meaning. Our ideals and values change. Things which were once important to us no longer seem so, yet it appears there is nothing else to take its place ..
.. we are walking into unknown territory and it can seem easier to stop where we are, despite our unresolved difficulties. What we don't know is that the unknown territory is that of the self. As the 'disordered' self breaks down it can mean the birth of our real self ..
.. In the beginning it is difficult; there is fear, there is anger, there is frustration. 'Why do I have to go through this, why can't I just be normal like everyone else?' What is 'normal' anyway? Use the anger, the fear and frustration to push past these new fears. With each step, we gain new awareness, new knowledge and increased strength. The process becomes easier and more tolerable. This is life, this is growth, a continual evolution ..
.. It is a time of learning to listen to the inner voice of the self, which is more than willing to help us. If we stop and take the time to listen, the inner voice will be our guide. All too often we do not hear ourselves ..
.. We have to become aware we do have a choice in everything. In making the choice we need to be aware of its implications. We can choose and set limits if we need to. We can choose to move at our own pace. It is going to feel unfamiliar, we will feel vulnerable and the fear will be there, but so too is the self's determination to grow ..
.. Being afraid is all right. Being hesitant is all right. Feeling vulnerable and defenceless is all right. They are all part of the ongoing development of our self. When we begin to work with it, we won't know where we are, where we are going and what will happen to us along the way. This is all right too ..
.. all the resources necessary will be found in our self and we will find them waiting for us at each step. Not only will we find them waiting, we will find they have been there all along."
- from Bronwyn Fox's Power Over Panic
Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts
Thursday, 29 May 2008
Sunday, 20 April 2008
SURVIVOR: TAKING CONTROL OF YOUR FIGHT AGAINST CANCER, by Laura Landro
I picked this up at a book fair back when my nephew Mehran had been diagnosed with bone cancer. After he passed away, I donated this and other books to the Oncology Dept at Manipal Hospital. It's funny (but not in a ha-ha way) that I donated them on April 16th 2007, and exactly one year later, I walked in to the department and asked if I could borrow some of them back.
The books have been bookcrossed, so that patients or family can borrow and return the books for free, and also make a journal entry if they want to, about how helpful the book was to them.
This is the first of several books I will probably read on cancer. My father, dear egg-painting Dr. Tonsils, has been diagnosed with bladder cancer. Fortunately it is superficial and low grade (I'm not entirely sure what that means exactly: but I do know it means chemotherapy won't be necessary, and for that I'm grateful). The lesions have been removed and he is in hospital recovering from surgery, while fighting a fever and coping with his chronic respiratory problems.
Me, I'm holding out, trying to stay positive and encouraging. Sometimes it feels like I've been treading water in a huge dark ocean since last week, and it can be really exhausting. But it's a situation where I simply cannot lose hope, and so I rest and then tread again, knowing that somehow we will get through this, no matter what the outcome.
Instead of my usual three or four excerpts, I'm posting all the excerpts that I think I may want to read again when I'm high on stress or low on strength, energy or hope. Maybe reading it once is enough, but I feel better knowing that I can come back and read through the encouraging words whenever I need to.
"There's no use trying to figure out why you, why now. Questions are irrelevant, because it won't wait for answers.
The key to survival is taking control, learning everything you can about your treatment, making informed decisions, and being prepared to fight if necessary;
And it is important to remember that one is never alone in the fight.
Nothing would ever be the same again in my life, nor in the life of anyone who cared for me. Everything I had taken for granted - my daily concerns, my work, my well-being, my sense of my place in the world, and even my physical appearance - was about to be taken away from me. My own mortality, something I had never seriously considered, was suddenly staring me in the face.
For some, talking directly to the victim is difficult; they don't know what to say or how to act. But there is no use trying to hide .. the face that one has cancer. One good outcome of being open is that people want to help. And that is where some of the best help will come from.
Acting strong and in control actually helped me feel tougher - the old "whistle a happy tune" scenario - and sometimes I even amazed myself at how well I seemed to be dealing with everything. But I had to fight every day to ward off the despair I felt inside.
I found it helped to write down my feelings and my fears ..
.. he gave her some advice we all needed: don't project the worst; focus on the real possibility of a cure. It was the simplest, yet most important, advice we could get.
.. going ballistic about small things can help release the steam that builds up when the larger fears seem overwhelming, even incomprehensible. And once you express your fear, it's easier to find ways to psych yourself up for the time when you will really need all your courage.
"No bad vibes, Mom, no thoughts that anything bad could ever happen; don't for an instant acknowledge that he could be hurt, only positive energy," I would tell her, trying to convince myself as well.
.. though I was terrified of needles .. I had to accept that they were now a daily fact of life. "You can always raise the bar on what you can take, how much you can stand," I wrote in my notebook. "Just raise it. Raise that bar."
Conquer fear.
I fought back tears. As close as I was to the black hole in front of me, it seemed more unreal than ever. I couldn't make myself think about what might actually happen to me, I could only take things one day at a time. From now on, that was the only way to get on with the next part of my life.
.. while staying in control intellectually is crucial to taking charge of your own care, you can't bury fears and emotions. I had focused on finding my own strength and conquering my own fear, on being strong so my family wouldn't fall apart worrying about how I was dealing with things. I had wanted to show the world that I was, in fact, invincible. Those are good feelings to have, and they do help you mentally to prepare for the complete unknown. But she was right; it was okay to be scared, and very important to express it outright when I needed to.
Patients who are used to being in charge, taking care of themselves or being the person on whom others depend will find this physical debilitation very hard to cope with .. may direct their anger over loss of control at doctors, medical personnel, or even their family caregivers. She recommends that family members treat the patient with respect and acknowledge his or her intelligence. She also stresses the importance of respecting a patient's modesty and privacy.
I knew I was lucky to have my family so close to me, but sometimes I just needed to shut them all out. "There's a sense of alienation between you and anyone related to you even though they are as close to you as they've ever been," I said into my tape recorder at one 3 a.m. session. "You don't want to push them away at a time like this, but sometimes you have to."
"You don't know what your life is going to be .. I read once that after you survive cancer, it's like a sword of Damocles over your head for the rest of your life .. but life depends on how well you live it, enjoying the freedom you get and hoping your cure has been effective and you get long-term survival - that's what you go for - you've got to be one of those great statistics. You've just got to."
My family tried to keep my spirits up. "We keep telling Laura that things are going so well," my mother wrote in her notebook .. "She feels so exhausted that our encouraging words seem to have little impact. We do it because it's important for her to hear every day that her progress is remarkable ..
"I'm scared. I've got to get that old confidence back .. I've got to start getting ME back .. Now you've got to make yourself do things, but you have to be cautious, follow the rules, make yourself watch every little thing and learn how to take care of yourself .. You have to learn that there will be setbacks but that you'll be okay. You've got to believe that this has worked and that it's going to keep working.
Your body has been through so much, your soul is battered, your psyche exhausted from the sheer effort of going through it .. "It's like you've been sent to hell, and suddenly someone says you can go home now."
But in the end, you have to make yourself believe. You have to summon all the strength and faith that enabled you to get through it in the first place, and turn that strength toward getting your life back.
Caregivers .. frequently say the biggest stress comes after they leave the hospital, when the tasks usually performed by the nursing staff have to be carried out by families.
Dr Abrams' studies found that 80 percent of the caregiving tasks fall to women, and that the medical establishment needs to establish better procedures to help caregivers cope after the patient has returned home.
Returning to your regular world after surviving cancer is much like reentering the earth's atmosphere from space. It takes a period of adjustment before you can resume normal life, and your journey has opened your eyes to things most of the people you encounter can never really understand unless they've been there.
.. made me more certain than ever of the importance of self-education for a cancer patient of any kind. The more you know about the latest science and wisdom in the medical world, the more informed your choices when it comes to the treatment of your disease. Don't assume your internist or even your local specialist is up to date on everything; become a lay expert to the extent possible, and use that knowledge on your own behalf.
.. it was good to be able to meet some of the patients who were there, and to tell them that not long ago, I had been in their shoes. I think it helped them to see someone who was already back to normal.
For the first couple of years after my transplant, I was so happy to be alive that I didn't think much about whether or now I was truly happy, or about what I really wanted. As most of my friends lamented turning forty, I was thrilled just to get there.
Once you have had cancer, the risk of other cancers is higher.
.. the fact is, I probably never will truly relax. I can only be grateful I've had a second chance at life, and I'll remain vigilant about protecting it. The fear that the disease will come back is never completely gone, but it can be kept at bay. It is hard work getting comfortable with the idea that the bad times are really over, that it's okay to feel happy, loved, and secure. As for my good health, I've learned to enjoy it. But I'm not getting too cocky about anything. Let's just say, so far, so good.
As in any cancer, early detection is crucial to increasing your odds of survival. The best advice I can give to someone who has symptoms such as chronic fatigue, a respiratory infection that won't go away, or pain in the spleen area, is to get a simple blood test. Don't procrastinate, and don't let a doctor tell you you don't need one. A CBC, or complete blood count, is a standard test that any physician can justify when a patient shows up with the kind of symptoms mentioned above. Time is of the essence once your blood starts going haywire; the longer it takes to find out what's wrong with you, the less chance there is that you can stop it in time.
When it's time for your chemotherapy, radiation, and transplant, hope for the best, be prepared for the worst, and try to take the attitude that you can handle whatever comes at you.
Expect nothing from yourself other than to get through each day, and tell yourself that each day you get through brings you closer to being better again.
Don't hesitate to reach out to the people who love you, for they will be your lifeline. But understand that this is difficult for them too, and that every relationship is likely to undergo some strain.
The hardest thing for many patients is the loss of control; .. as an adult you will feel like you are a small child again, and you may even resent that.
.. face the fact that some of your relationships won't make it. If they don't, maybe that is for the best. There is nothing like a crisis to bring out the true colours in people.
It would be nice to think that once you've survived, your brush with cancer is over. But in fact, your risks of developing another cancer may be higher than the average person. You must be attentive about follow-up care, and keep up with the latest research. After a while, you won't think about it every day, and the day will come when you get through a long time without thinking about it at all. But you can never forget it. To borrow from the famous saying about freedom, the price of health is eternal vigilance.
- from Laura Landro's book: Survivor: Taking Control of Your Fight Against Cancer
The books have been bookcrossed, so that patients or family can borrow and return the books for free, and also make a journal entry if they want to, about how helpful the book was to them.
This is the first of several books I will probably read on cancer. My father, dear egg-painting Dr. Tonsils, has been diagnosed with bladder cancer. Fortunately it is superficial and low grade (I'm not entirely sure what that means exactly: but I do know it means chemotherapy won't be necessary, and for that I'm grateful). The lesions have been removed and he is in hospital recovering from surgery, while fighting a fever and coping with his chronic respiratory problems.
Me, I'm holding out, trying to stay positive and encouraging. Sometimes it feels like I've been treading water in a huge dark ocean since last week, and it can be really exhausting. But it's a situation where I simply cannot lose hope, and so I rest and then tread again, knowing that somehow we will get through this, no matter what the outcome.
Instead of my usual three or four excerpts, I'm posting all the excerpts that I think I may want to read again when I'm high on stress or low on strength, energy or hope. Maybe reading it once is enough, but I feel better knowing that I can come back and read through the encouraging words whenever I need to.
"There's no use trying to figure out why you, why now. Questions are irrelevant, because it won't wait for answers.
The key to survival is taking control, learning everything you can about your treatment, making informed decisions, and being prepared to fight if necessary;
And it is important to remember that one is never alone in the fight.
Nothing would ever be the same again in my life, nor in the life of anyone who cared for me. Everything I had taken for granted - my daily concerns, my work, my well-being, my sense of my place in the world, and even my physical appearance - was about to be taken away from me. My own mortality, something I had never seriously considered, was suddenly staring me in the face.
For some, talking directly to the victim is difficult; they don't know what to say or how to act. But there is no use trying to hide .. the face that one has cancer. One good outcome of being open is that people want to help. And that is where some of the best help will come from.
Acting strong and in control actually helped me feel tougher - the old "whistle a happy tune" scenario - and sometimes I even amazed myself at how well I seemed to be dealing with everything. But I had to fight every day to ward off the despair I felt inside.
I found it helped to write down my feelings and my fears ..
.. he gave her some advice we all needed: don't project the worst; focus on the real possibility of a cure. It was the simplest, yet most important, advice we could get.
.. going ballistic about small things can help release the steam that builds up when the larger fears seem overwhelming, even incomprehensible. And once you express your fear, it's easier to find ways to psych yourself up for the time when you will really need all your courage.
"No bad vibes, Mom, no thoughts that anything bad could ever happen; don't for an instant acknowledge that he could be hurt, only positive energy," I would tell her, trying to convince myself as well.
.. though I was terrified of needles .. I had to accept that they were now a daily fact of life. "You can always raise the bar on what you can take, how much you can stand," I wrote in my notebook. "Just raise it. Raise that bar."
Conquer fear.
I fought back tears. As close as I was to the black hole in front of me, it seemed more unreal than ever. I couldn't make myself think about what might actually happen to me, I could only take things one day at a time. From now on, that was the only way to get on with the next part of my life.
.. while staying in control intellectually is crucial to taking charge of your own care, you can't bury fears and emotions. I had focused on finding my own strength and conquering my own fear, on being strong so my family wouldn't fall apart worrying about how I was dealing with things. I had wanted to show the world that I was, in fact, invincible. Those are good feelings to have, and they do help you mentally to prepare for the complete unknown. But she was right; it was okay to be scared, and very important to express it outright when I needed to.
Patients who are used to being in charge, taking care of themselves or being the person on whom others depend will find this physical debilitation very hard to cope with .. may direct their anger over loss of control at doctors, medical personnel, or even their family caregivers. She recommends that family members treat the patient with respect and acknowledge his or her intelligence. She also stresses the importance of respecting a patient's modesty and privacy.
I knew I was lucky to have my family so close to me, but sometimes I just needed to shut them all out. "There's a sense of alienation between you and anyone related to you even though they are as close to you as they've ever been," I said into my tape recorder at one 3 a.m. session. "You don't want to push them away at a time like this, but sometimes you have to."
"You don't know what your life is going to be .. I read once that after you survive cancer, it's like a sword of Damocles over your head for the rest of your life .. but life depends on how well you live it, enjoying the freedom you get and hoping your cure has been effective and you get long-term survival - that's what you go for - you've got to be one of those great statistics. You've just got to."
My family tried to keep my spirits up. "We keep telling Laura that things are going so well," my mother wrote in her notebook .. "She feels so exhausted that our encouraging words seem to have little impact. We do it because it's important for her to hear every day that her progress is remarkable ..
"I'm scared. I've got to get that old confidence back .. I've got to start getting ME back .. Now you've got to make yourself do things, but you have to be cautious, follow the rules, make yourself watch every little thing and learn how to take care of yourself .. You have to learn that there will be setbacks but that you'll be okay. You've got to believe that this has worked and that it's going to keep working.
Your body has been through so much, your soul is battered, your psyche exhausted from the sheer effort of going through it .. "It's like you've been sent to hell, and suddenly someone says you can go home now."
But in the end, you have to make yourself believe. You have to summon all the strength and faith that enabled you to get through it in the first place, and turn that strength toward getting your life back.
Caregivers .. frequently say the biggest stress comes after they leave the hospital, when the tasks usually performed by the nursing staff have to be carried out by families.
Dr Abrams' studies found that 80 percent of the caregiving tasks fall to women, and that the medical establishment needs to establish better procedures to help caregivers cope after the patient has returned home.
Returning to your regular world after surviving cancer is much like reentering the earth's atmosphere from space. It takes a period of adjustment before you can resume normal life, and your journey has opened your eyes to things most of the people you encounter can never really understand unless they've been there.
.. made me more certain than ever of the importance of self-education for a cancer patient of any kind. The more you know about the latest science and wisdom in the medical world, the more informed your choices when it comes to the treatment of your disease. Don't assume your internist or even your local specialist is up to date on everything; become a lay expert to the extent possible, and use that knowledge on your own behalf.
.. it was good to be able to meet some of the patients who were there, and to tell them that not long ago, I had been in their shoes. I think it helped them to see someone who was already back to normal.
For the first couple of years after my transplant, I was so happy to be alive that I didn't think much about whether or now I was truly happy, or about what I really wanted. As most of my friends lamented turning forty, I was thrilled just to get there.
Once you have had cancer, the risk of other cancers is higher.
.. the fact is, I probably never will truly relax. I can only be grateful I've had a second chance at life, and I'll remain vigilant about protecting it. The fear that the disease will come back is never completely gone, but it can be kept at bay. It is hard work getting comfortable with the idea that the bad times are really over, that it's okay to feel happy, loved, and secure. As for my good health, I've learned to enjoy it. But I'm not getting too cocky about anything. Let's just say, so far, so good.
As in any cancer, early detection is crucial to increasing your odds of survival. The best advice I can give to someone who has symptoms such as chronic fatigue, a respiratory infection that won't go away, or pain in the spleen area, is to get a simple blood test. Don't procrastinate, and don't let a doctor tell you you don't need one. A CBC, or complete blood count, is a standard test that any physician can justify when a patient shows up with the kind of symptoms mentioned above. Time is of the essence once your blood starts going haywire; the longer it takes to find out what's wrong with you, the less chance there is that you can stop it in time.
When it's time for your chemotherapy, radiation, and transplant, hope for the best, be prepared for the worst, and try to take the attitude that you can handle whatever comes at you.
Expect nothing from yourself other than to get through each day, and tell yourself that each day you get through brings you closer to being better again.
Don't hesitate to reach out to the people who love you, for they will be your lifeline. But understand that this is difficult for them too, and that every relationship is likely to undergo some strain.
The hardest thing for many patients is the loss of control; .. as an adult you will feel like you are a small child again, and you may even resent that.
.. face the fact that some of your relationships won't make it. If they don't, maybe that is for the best. There is nothing like a crisis to bring out the true colours in people.
It would be nice to think that once you've survived, your brush with cancer is over. But in fact, your risks of developing another cancer may be higher than the average person. You must be attentive about follow-up care, and keep up with the latest research. After a while, you won't think about it every day, and the day will come when you get through a long time without thinking about it at all. But you can never forget it. To borrow from the famous saying about freedom, the price of health is eternal vigilance.
- from Laura Landro's book: Survivor: Taking Control of Your Fight Against Cancer
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