What your friends with cancer want you to know (but are afraid to say)

What your friends with cancer want you to know (but are afraid to say).

I found a link to a blog on a friend's facebook page (thanks Iris) and thought it summed things up really well.   Here it is if you're interested:

What Your Friends With Cancer Want You To Know (But Are Afraid To Say)

August 7, 2014 by Kim Helminski Keller

The inside scoop from someone who’s been there.

People with cancer are supposed to be heroic.

We fight a disease that terrifies everyone.

We are strong because we endure 

treatments that can feel worse than the actual malignancies

We are brave because our lab tests come back with news we don’t want to hear.

 The reality of life with cancer is very different from the image we try to portray.

Our fight is simply a willingness to go through treatment because, frankly, the alternative sucks. Strength? We endure pain and sickness for the chance to feel normal down the road.  Brave? We build up an emotional tolerance and acceptance of things we can’t change. Faith kicks in to take care of the rest.

The truth is that if someone you love has cancer, they probably won’t be completely open about what they’re going through because they’re trying so hard to be strong.

For you.

However, if they could be truly honest and vulnerable, they would tell you:

1. Don’t wait on me to call you if I need anything.  Please call me every once in a while and set up a date and time to come over. I know you told me to call if I ever needed anything, but it’s weird asking others to spend time with me or help me with stuff I used to be able to do on my own. It makes me feel weak and needy, and I’m also afraid you’ll say “no.

2. Let me experience real emotions. Even though cancer and its treatments can sometimes influence my outlook, I still have normal moods and feelings in response to life events. If I’m angry or upset, accept that something made me mad and don’t write it off as the disease. I need to experience and express real emotions and not have them minimized or brushed off.

3. Ask me “what’s up” rather than “how do you feel.” Let’s talk about life and what’s been happening rather than focusing on my illness.

4. Forgive me.  There will be times when the illness and its treatment make me “not myself.” I may be forgetful, abrupt or hurtful. None of this is deliberate. Please don’t take it personally, and please forgive me.

5. Just listen. I’m doing my very best to be brave and strong, but I have moments when I need to fall apart. Just listen and don’t offer solutions. A good cry releases a lot of stress and pressure for me.

6. Take pictures of us. I may fuss about a photo, but a snapshot of us can help get me through tough times.  A photo is a reminder that someone thinks I’m important and worth remembering. Don’t let me say “I don’t want you to remember me like this” when treatment leaves me bald or scarred.  This is me, who I am RIGHT NOW. Embrace the now with me.

7. I need a little time alone.  A few points ago I was talking about how much I need to spend time with you, and now I’m telling you to go away.  I love you, but sometimes I need a little solitude. It gives me the chance to take off the brave face I’ve been wearing too long, and the silence can be soothing.

8. My family needs friends. Parenting is hard enough when your body is healthy; it becomes even more challenging when you’re managing a cancer diagnosis with the day-to-day needs of your family. My children, who aren’t mature enough to understand what I’m going through, still need to go to school, do homework, play sports, and hang out with friends. Car-pooling and play dates are sanity-savers for me. Take my kids. Please. My spouse could also benefit from a little time with friends. Grab lunch or play a round of golf together. I take comfort in knowing you care about the people I love.

9. I want you to reduce your cancer risk. I don’t want you to go through this. While some cancers strike out of the blue, many can be prevented with just a few lifestyle changes – stop smoking, lose extra weight, protect your skin from sun damage, and watch what you eat. Please go see a doctor for regular check-ups and demand follow-up whenever pain, bleeding or unusual lumps show up. Many people can live long and fulfilling lives if this disease is discovered in its early stages. I want you to have a long and fulfilling life.

10. Take nothing for granted. Enjoy the life you have right now. Take time to jump in puddles, hug the kids, and feel the wind on your face. Marvel at this amazing world God created, and thank Him for bringing us together.

While we may not be thankful for my cancer, we need to be grateful for the physicians and treatments that give me the chance to fight this thing. And if there ever comes a time when the treatments no longer work, please know that I will always be grateful for having lived my life with you in it. I hope you feel the same about me.

Although the perspective is different than mine (the writer is a mother with cancer)  I agreed with almost all of it - the only one I was iffy on was #3 - don't be afraid to ask what's really going on - it doesn't have to be the focus of every conversation, but it's been a pretty huge part of our lives for 4 1/2 years, so to never mention it at all really feels weird.

We are so thankful for all of the support and love we have received from family, friends and even strangers - we couldn't do this alone.

Update:  Very tough week

The pain that Jacqui had been experiencing increased a lot and she made the decision to stop work a  few days early.  Since then it's been really tough finding the right medications - ones that will ease the pain without making her sick.   So I think we may have the pain figured out, now we just have to get some food in her.  

Next week:  Doctors appointments and decisions to make

Things are still up in the air about which type of chemo she will undergo, but she has an appointment on Monday and we'll have to make that decision then.  In the event that she does have to have a port, she has that set up for Tuesday morning.  

Either way treatment should start next week.

       

Change of plans

Change of plans

A few weeks ago Jacqui started feeling a familiar pain. She called her oncologist's office and after a short wait, he called her back himself to ask about her symptoms.  He said he'd line up some tests for her and so in the last two weeks she has had a CT scan, a bone scan and a hip X-ray.  Today we went in for the results and things were as we had suspected.

The good news is there are no new tumours and the bone scan and X-ray were clear.  

The bad news is that the existing ones are growing rapidly. One has grown almost 2 cm since September.  

So, once again, plans are changing and chemo is back in her future - very near future.

There are two choices for chemo.  The first choice  (Pazopanib - targets a specific pathway to interfere with the growth of cancer cells) is a newer treatment that is not approved for wide use in Canada yet, but it is approved for testing.  The difference is cost - until it is approved for use, there is no insurance coverage. Her doctor is going to look into getting funding for it, but that's up in the air, we'll make our decision when we hear more.  This is administered in pill form.

The second (Gemcitabine - interferes with the growth and spread of tumour cells) is approved for use and would be a fine option as well.  This would be administered intravenously and he thinks it would be best to have a port because of the constant strain on her veins.  That would mean a small day surgery to insert the port and then chemo could start right away.  

Both have lots of fun side effects.

So - more disappointments and more losses - it never gets easier.

But we are thankful for a wonderful, caring, and very knowledgable medical team that take all the time we need.   We are thankful for the people in our lives who we can be really sad or really happy with.   We are thankful for the thoughts and prayers of so many - some of which we have never met.

We pray for peace and wisdom.

"All we can do is try to rise beyond the question 'Why did it happen?' and begin to ask the question 'What do I do now that it has happened?'" -- Harold Kushner