Trust me I’m a Cancer Patient

trust-me-im-a-cancer-patientTrust Me I’m a Doctor Cancer Patient by Wesley Finegan is a detailed manual for understandings symptoms of cancer, and it’s various treatments and side effects. Finegan worked for a number of years as a doctor with an interest in patients with cancer, before being appointed as a consultant in palliative medicine. Three years later, he became a cancer patient himself. People suggested that he would know all about this, but he had never been a patient before and he still had much to learn. He shares his wisdom in this book. This is the predecessor to his similarly structured book, Being a Cancer Patient’s Carer: A Guide. This book contains forty five chapters and each one follows the same practical structure (TANDEM):

The doctor says
Think
Ask
Note
Do
Explore
More information (pages viii-ix)

The first section of the book is focused on understanding Pain. It discusses the different ways that pain can be assessed, including the classic: ‘What number between 0 and 10 would you give your pain, with 0 being none at all and 10 being the most you could ever imagine?’ I remember being asked this so many times in hospital and usually finding it difficult to differentiate in the 3-7 range. However, there was one occasion when they ripped out my chest drain, that I understood what a 10 felt like!

Good assessment of pain is necessary for good management of pain. In many cases there are a range of pain management options available, so it is important to tune it to its effectiveness, side effects and so on. There has to be teamwork between the patient and doctors to get this right. Others not involved in your health care should not be allowed to interfere or change treatment, as this could be very dangerous. Pain killers need to be very carefully managed. Sometimes there are different means of administering the pain medication. The patient may be able to wear a patch, or be attached to a machine that limits the dose while they self-administer.

The second section of the book documents a long list of Physical Problems that may be associated with the disease or treatments. The list includes: loss of appetite; constipation; depression; diarrhoea; itchiness; sore mouth; difficulty sleeping; constant tiredness; weakness; and many more issues. I can identify personally with all these above. In my case, they are some of the side effects of the chemo, rather than symptoms of the cancer.

The beauty of this book is that you can look up whatever chapters may be relevant at different times. There may be times when I’d look up a number at once, and others that probably wouldn’t get a look in. Many of the chapters contain helpful diagnostic check lists to help you understand what is or isn’t happening to you. You are also encouraged to document pain and symptoms so that you can refer back when things reoccur. This help to recognise patterns, changes, and sometimes alleviate fears when things can be demonstrated to have minimal or temporary impact.

Section three focuses on Personal, Social and Spiritual Problems. Some of these chapters are unlikely to be read in advance by a patient. For example: I am expecting Bad News. You’d have to be very quick off the mark, getting onto this book! However, others offer great advice for further down the track. They deal with some pretty heavy issues, from early ones, such as How to tell my Children the Bad News down the track to I want to make a Will or Euthanasia, living wills (advance directives) and resuscitation.

It’s probably not wise or helpful for people in early stages of cancer to dwell on some of the final chapters. There’s no point and it’s probably not helpful to be rushing into thinking about worst case scenarios. But there will be other chapters in this section worth dipping into early on. Two that have been particularly relevant to me have dealt with thinking through complementary therapies, such as acupuncture, and a chapter on issues relating to returning to work. The 3rd last chapter deals with thinking about spiritual needs. Personally, I wouldn’t leave this until the end, especially in case the end comes earlier than anticipated.

This book would provide an excellent resource for medical students, doctors, nurses and other health professionals engaging with cancer. I’d also recommend families who have someone going through cancer, to get hold of a copy, as a reference book for all to read as relevant.

Help me live

HelpmeliveHelp Me Live: 20 things people with cancer want you to know is a must read for anyone who seriously wants to support people with cancer. This book is a treasure chest. Lori Hope understood! She surveyed hundreds of people with cancer, read widely on the topic, spoken with doctors, patients, carers and therapists. Most significantly, she battled with cancer herself. The book is chocked full of wisdom, insights, anecdotes, humour and pathos. It shares the actual stories of so many who have personal experience in these areas. It’s an excellent resource. I’ve read it and I’ll be recommending it widely.

So if you’re an oncologist or work in oncology, then please get yourself a copy and read it! If your husband, wife, child, parent, relative, friend, neighbour, or colleague have cancer – and you want to support them – then please heed the wisdom in this book. If you know people with cancer, but you’re scared of saying or doing the wrong thing, then this book will equip you to help. If you’re the pastor of a church, a medical social worker, a general practitioner, a nurse, or simply want to better understand others, then this will open your mind to the needs of many. If you have cancer yourself, and want to feel supported and loved and understood, then I recommend reading this book and passing it around.

Many of the books I’ve read have been written from a specifically Christian perspective. This one isn’t, but it shows an empathy for people with a range of beliefs and doesn’t discount faith in God or the significance of prayer.

I’ve read Help Me Live through once and I anticipate dipping into it again and again in days to come. Some of the issues it raises are worth exploring more thoroughly and I’ve begun compiling a ‘further reading’ file to explore at some point. At a recent ‘Lung Cancer and Mesothelioma Support Group’ meeting I mentioned this resource and none of the medical staff, cancer support staff, carers or patients were aware of it’s existence. But then neither did I until the author wrote to me a few weeks back. So let me give you the gist of it with a few quotes and snippets from the book.

The 20 things people with cancer want you to know

1. It’s okay to say or do the ‘wrong’ thing.

“Doing nothing or holding back is worse to me than doing too much or saying the wrong thing.”  (p20)

Six words in sequence that never fail: “I don’t know what to say.”  (p18)

2. I need to know you’re here for me, but if you can’t be, you can still show you care.

“I know that my being sick scares you. It scares me, too. Don’t stay away from me because of this. We don’t have to talk about it. Just be here for me.”  (p25)

3. I like to hear success stories, not horror stories.

“They spent the entire afternoon telling me about everyone they had known that had cancer, and telling me the details about how many of them had passed away. It made me feel terrified.”  (p32)

4. I’m terrified and need to know you’ll forgive me if I snap at you or bite your head off.

“I just need them to understand that I was not at my best mentally and emotionally and to be patient with me.”  (p42)

5. I need you to listen to me and let me cry.

“Sometimes someone would ask me how I was and when we started talking cancer, they changed the subject. That made me feel terrible.”  (p50)

6. Asking my permission can spare me pain.

“I liked it when people would call and make an appointment to come over and see me and call an hour before to check that I was up for it.”  (p62)

7. I need to laugh – or just forget about cancer for a while!

“I just needed someone to help take my mind off all the stuff going on. I didn’t want to think about the cancer. So just do things like watch a movie or go for a walk and just talk to them and treat them like you would if they didn’t have cancer.”  (p69)

8. I need to feel hope, but telling me to think positively can make me feel worse.

“Just think positive … hooey! LOL … that’s it? That’s all it takes to cure my cancer? And hey, you try thinking positive after a round of chemo.”  (p77)

9. I want you to respect my judgment and treatment decisions.

“He kept encouraging me to deny chemo, that it was poison. It didn’t help me at all. My choice wasn’t respected, and I was left with a sinking suspicion that I may be choosing to poison myself.”  (p92)

10. I want you to give me an opening to talk about cancer and then take my lead.

“I just wanted it to be normal. My friend came and we played Scrabble and talked, and it helped. Sometimes we talked about cancer. Sometimes we did not. But we played Scrabble just as we had most of our friendship.”  (p99)

11. I want compassion, not pity.

“Many words of heartfelt compassion without being condescending were said. ‘I love you’ meant a lot to hear, or ‘You mean so much to me’.”  (p105)

12. Advice may not be what I need, and it may hurt more than help. Try comforting me instead.

“I don’t like it when anyone starts a sentence with ‘you have to’.”  (p111)

13. I am still me; treat me kindly, not differently.

“People don’t change when they get cancer and suddenly stop wanting to be called smart, sexy, fun, funny, a good Christian, an excellent cook, singer, etc. or a total fashionista. People are more than their cancer.”  (p118)

14. If you really want to help me, be specific about your offer, or just help without asking.

“Instead of asking can I do anything, just do something, don’t wait for me or my caregiver to ask, because we more than likely won’t.”  (p123)

15. I love being held in your thoughts or prayers.

“A friend told me I was wrapped in her love and prayers. I’ve never forgotten those words, and years later when I had a health scare, I thanked her again and told her how much those words meant to me.”  (p128)

16. Hearing platitudes or what’s good about cancer can minimize my feelings.

“Beginning a sentence with ‘At least…’, at best minimizes and at worst totally dismisses a concern or worry.”  (p135)

17. I don’t know why I got cancer, and hearing your theory may add grave insult to injury.

“A few people act as if you might be contagious or had done something to deserve the disease. Now that really hurt, I suppose because of the little nagging voice inside that’s saying the same thing.”  (p139)

18. Don’t take it personally if I don’t return your call or want to see you.

“I wanted people to understand that I was tired and couldn’t return all calls or emails.”  (p146)

19. I need you to offer support to my caregiver, because that helps me, too.

“When friends called and said they were bringing meals over and asked whether Thursday or Friday would be best, I could cry. Not only was it a show of their love and support but also it relieved my wife of yet something else to deal with.”  (p152)

20. I don’t know if I’m cured, and bringing up my health can bring me down.

“On the ‘Are you cured now?’ issue, every time they ask it, it drives home the point deep inside of you that you will never know.”  (p162)

And a bonus, from the revised and expanded edition…

21. I am more grateful than I can say for your care, compassion, and support.

“Friends and school families came and took care of us. Took my daughter to school and sports. Set a website for meals and rides. Kept my dogs when I was in hospital. Kept my kid when I was in hospital! They saved my life, and I will be forever grateful.”  (p166)

On that note, let me say again that I am so thankful to God and to so many for their prayers, love, encouragement, and practical support. I need you to help me live, too!

Thank you!