Being a cancer patient’s carer: A guide

carerguideCancer is tough for the patient, but it’s also tough for those who care for them. It brings so many changes and challenges, and the carer is often as unprepared as the patient. Where does the carer go for help? Many hospitals have cancer support groups, open to both patients and their carers. There are numerous websites such as inspire.com and cancergrace.org that provide information, experience and support to patients and carers. You could contact your local cancer council or other cancer support organisation for help in finding support for carers. And you will find a wealth of informed practical wisdom in Being a Cancer Patient’s Carer: A Guide by Wesley Finegan.

Every person struggling with cancer relies on having carers. These people may be professionals such as specialists, nurses, and pain managers. They may also be personal friends or relatives, often a spouse or an adult child. A competent and compassionate carer is a great blessing. I am especially blessed to have a loving wife, who keeps herself well informed about the disease, treatments, possibilities, alternatives, and more. But then, not everyone with cancer is married to a doctor ;).

Finegan’s book won’t necessarily make someone compassionate, but it will go a long way to making someone competent as a carer. It’s hard to think of an author with greater credentials to write on the topic. He has MB BCh BAO MRCGP MICGP D Pal Med’ listed after his name! I’m not sure what they all refer to, but they sound impressive. More impressive again, is his experience. He worked in General Practice with a special interest in caring for patients with cancer. This led him to become a consultant in palliative medicine. In 1994 he became a cancer patient himself and in 2003 his wife developed cancer and he became her carer. These experiences have taught Finegan much and he generously shares his wisdom in this book.

This guide is intended for practical use. It’s well constructed and easy to follow. Each chapter – and there are 43 chapters, each roughly 4 pages long – is constructed around the acronym TANDEM. They begin with some basic facts to help people understand the particular problem being addressed and then the acronym is used to examine various issues from different perspectives:

T Think
You are facing new situations regularly as a carer. Hopefully I can help you think through the issues you might have to face.

A Ask
There is so much to learn. Where does one start? What do you need to know and who can tell you the answers? I’ll try and help you with some of the questions I have asked.

N Note
Making a note of a relevant detail now might save you a lot of difficulty remembering those elusive facts in a weeks’ time!

D Do
Here I will offer you some practical ideas that have been tried and tested by my patients and some that worked for Alice and me.

E Explore
Sometimes we want to know more or find out about something we would like to know about. I’ll try and guide you to the best sources of information.

M More information
If there is something that has not been said already and it’s relevant, you’ll find it here. (pages x-xi)

I’m not aware of any other books for carers that are as comprehensive and practical as this one. It begins with the first shock of diagnosis, then addresses a broad range of symptom, treatment, and care issues, before dealing with the difficult matters of failed treatment, dying, death and bereavement. It’s concerned for the well-being of the carer as well as the patient.

It’s probably too much to take in all at once, but the beauty of this book is that it’s so well arranged that you don’t have to. You can read whatever’s most relevant to you and your situation at the time. You’ll find it easy to come back to sections you’ve skipped over, if and when they become relevant. And you can follow the links and suggestions for more information or advice when needed. I would suggest consulting it regularly as different issues arise. Flick through the table of contents so you can see the scope of the book. It would also be useful to annotate the book with your own questions and observations, so that you can follow things up with the relevant people at another time.

If you are caring for someone who is going through cancer, then I highly recommend you get yourself a copy of this book. If you have cancer and want to support your carer, then you could purchase a copy for them. It’s readily available on line so you don’t need to worry about what bookshop to look in. You’ll appreciate it and so will they. Just let them know when you give it to them, that they’re doing a great job and you wanted to show your appreciation by giving them this book!

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!