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."
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