Beeswax and Helping

If you want to be a good friend during a medical crisis, ask how you can help. Don't say, 'how can I help?' Ask 'Do you need anything from the grocery store? I'm going later today.' Mow their lawn. Pick up their kids from school. All those things. Anything you can do.

However, its 'none of your beeswax' on what exactly their health issues are so:

1. Do not interrogate them daily on what's the latest from their doctor 
2. Do not tell the world every little detail you interrogated out of them. Its not your story to tell.
3. Do not tell them your cousin's hairdresser's uncle's neighbor's son had the same thing and their treatment was what your friend has and they died in the end. Or conversely, their treatment was different and must be better because they lived another two years.

So remember, do not interrogate, its not your beeswax to share, and any other treatment anyone else had is irrelevant.

But go mow their lawn.....

Getting the 'good advice'

Becky, over at BCBecky blogged about The costs of cancer treatment. I read her post and then commented on it. And then, I started thinking (sorry, I do think sometimes).

In her blog post, Becky talked about the costs of treatment, but not just the financial ones. And the sustainability of keeping up with her current course of treatment. Of course she has advice from people who may not have had cancer. My thought would be talk to the people who have had cancer and had to make the same types of decisions and then make your own choice.

I really think that as those who have had cancer, we need to take our learned knowledge and help others who are facing the same decisions. After a cancer diagnosis, we have gone through so much as we made decisions, coped with the treatment, and are still here to talk about it. So why can't we help others?

In making our decisions, we had to educate ourselves  and go through the decision making process. We learned the 'unsaid' portions of the decisions we made. For example, I do not know a single woman who has gone through breast cancer, with a mastectomy, and reconstruction (not me) who has not said 'I wish they had made sure I understood that part', 'I didn't realize that until after' or 'I don't think I knew it would take so long' and other statements.

Honestly I know there are many decisions I wish I had  known more about my options before I chose. Some of the best advice I ever got was from my friends who had been through the same crap. Because they knew. The doctors couldn't tell me. The nurses couldn't tell me. I think they assumed I would just take their suggestions and be a lemming.

But only by talking to my friends with breast cancer, or whatever ailment I needed to make a decision for, did I learn 'the truth, the whole truth, and nothing but the truth'. None of them had medical training or social workers or anything like that. But the difference was they had been through it themselves. If we could provide 'good advice' to others, that would be great.

Why do I do what I do?

I'm not talking about cancer, I'm talking about volunteer stuff. I never used to volunteer. I mean rarely did I volunteer. I was too busy having a life, or trying to at least. Ten years ago, I got bit by the volunteer bug and now I seem to fill my life with volunteering.

In the past ten  years I have: been on the board of the friends organization for the town library, volunteered at Komen events, volunteered with Relay for Life, volunteered at the local cancer support organization, worked at the annual conference for NEDMA, help the Cystic Fibrosis Foundation with their website for their annual fundraiser, briefly helped with the local chapter of the American Diabetes Association and one of their annual events, helped NECCS with their annual luncheon and fundraiser, and volunteer with Casting for Recovery. There's more but I can't remember.

So why do I do all this? Because it makes me feel good. I don't do more than I should. For example when I help CFF, they send me an email and say can you please update our website with this information. Or I helped NECCS with their vendor round up. I could do it from home and not have to leave the house.

I help several causes. Many are cancer related but not all. I have decided that is not as important as I previously thought.

But before 2004, I never volunteered. Especially for cancer stuff. I didn't want to be as open about my medical stuff than I had to be.

But now I wonder why I didn't. I volunteer with people and I have no idea if they had the ailment or not. Nor do I care. Because that's not the important part of volunteering. The important part is getting that warm feeling from helping others and see a smile on people's faces when they experience it.

And I can show them how I got through cancer treatment and there is life on the other side. But then I have to admit I had cancer too - and that's part of my healing process too.

Privacy and support

With a cancer, or other 'icky', diagnosis, life has significant ups and downs. Sometimes people want support and sometimes they want privacy. It depends on lots of things - patient and family member's personality, type of diagnosis, current state on the medical roller coaster, among other issues. So the outsider is left to figure out when to intrude and when not to.

I have a friend who is coping with her husband's Stage IV cancer diagnosis and on-going treatment. It is hard to get together with  her these days as she can't tell day by day how he will be doing and if she will be comfortable leaving him. We communicate by email and try to set up times to get together - which sometimes it takes months to meet.

Another friend has a long term friendship with another couple who have suffered a horrible family tragedy last year and now the wife is dealing with metastases in her Stage IV cancer diagnosis. They are normally a very private couple and usually keep their personal issues quiet. The husband sent my friend an email about his wife's disease progression.

My thought is that this is a cry for help and I think my friend should call them up and offer to bring lunch on Saturday or something so they can get together. If they are opening up at this horrible time in their life, it is a request for support that they know my friend can provide through her own experiences and their long term friendship.

My friend, on the other hand, isn't so sure and thinks they would not want the intrusion. She knows them and I don't so perhaps she is correct here. But it is very hard to tell in these situations

When is it time to intrude and when is it time to honor their privacy. This goes beyond the issue of hospital visits that I blogged about the other day.

Many patients with icky medical diagnosis set up ways to control communication so they are not overwhelmed - whether a blog (like me), a web page, Facebook page, Twitter feed, or email blasts. It can be very difficult to control the communication flow. How to balance the latest medical information, need for privacy, and over anxious friends and family members is a huge problem for many patients.

The last thing many patients need is daily phone calls from the same people asking for the latest updates - what did the doctor say, what did your scan show, are you worried, how are your children coping -  have you told them yet, and a slew of other questions that pressure the patient to share when they may not be ready to do so.  And if there are repeated requests over and over the patient's stress mounts at an already stressful time.

A patient's right to privacy must be respected but sometimes they do need some support. The tricky part is figuring out when to intrude.

The price we pay

I went off for a good weekend of volunteering, helping a worthy cause. But now I am paying the price. Sunburn. Oops. A big oops. My face is feeling a little crispy. I did put sunscreen on and wear a hat, most of the time. Well sunscreen all the time and the hat most of the time. But I was outside a lot.

I will just hope it fades away by Friday when I have my annual physical. I have to focus this week and come up with a list of ailments and issues to discuss. It won't be a short list because nothing related to my health is ever uncomplicated. My health is never uncomplicated. Mostly because with my history they need to be sure (blah, blah, blah).

But it was a good weekend and it helped a worthy cause. Except for the blister I got too.

I only wrote a blog

You hear the stories about how people who get through cancer, or other life changing events, do something to give back - to give their life more value. I have a blog. This gentleman, on the other hand, has set an example for all of us.

I wrote a blog which started as my way of communicating about my wonderful cancer roller coaster. Now I hope it helps other people by showing their is life after cancer but allows me to continue to offer my opinion on all sorts of things. But I am an underachiever in comparison.

Mr. Huntsman has created a cancer institute and has donated more than one billion (that's right a 'b' not an 'm') to help others. He had has cancer four times - I am happy not to compete with that number - and therefore has a special insight into what its like to go through diagnosis and treatment. We should all try to be like him and help others as much as we can.

Creatively coping

Those of us with cancer learn to creatively cope with our ailments. I took up knitting and crocheting after being told by a friend that I needed a hobby during chemo. I have made more scarves but have not progressed to anything more complicated but not for the lack of trying. Other people are much more talented than I. One of them is an online friend, Ria Vanden Eynde, an artist with a blog and a website and now an art show in Florida.


I 'met' Ria a few years ago after she was looking to find people who had the same cancers as she did - thyroid and breast cancer. She lives in Belgium so I have never actually met her. We have communicated online through online communities, our blogs and Facebook. I find her work intriguing. She was diagnosed 9 months apart so had a double whammy of a cancer diagnosis. I have met a few people with thyroid cancer over the years and many women with breast cancer. But she is the only person I know who has had the same two cancers as me. We may be small in number but we are mighty!

If I was in Florida I would try to go to her show which opens today. She has found a creative outlet to express her coping with two cancers. Now she is helping others with her art. At the show, she will donate $40 for each print she sells to My Hope Chest which is a non profit helping uninsured women with the costs of reconstruction surgery.

She is to be applauded for taking this step to help others and give back. It is this kind of effort to take ones traumas and turn them into something that helps others that is important. More people should do this. If you are any where near St Petersburg, please stop by the eve-N-odd gallery and check out the art and maybe buy a print so you can help Ria help others.

More on helping if you know someone with cancer

As a follow up to yesterday's post on helping people with cancer. What can you do to help? How can you help? While a cancer or other diagnosis doesn't mean life is over, it can make things difficult.

I assume everyone has the best intentions and wants to bring over a meal or something to help but with cancer, a casserole may not be appreciated. If the person cooks for their large family, casseroles may be appreciated but if a smaller family or someone else cooks, I would definitely ask. And as a reality check, how many casseroles can one use at a given time? While in chemo, food can lose its appeal. I don't like shrimp any more. While in chemo, scallions made me nauseous.

I think the best thing to do is ask them, their spouse or other family member how you can help. Maybe they don't need food but need someone to help get the kids to school or be there for them after school so both husband and wife can go to treatments together. Or even help getting the kids to or from sports or other events. Or maybe they need rides to or from treatment. Or maybe just picking up prescriptions to getting groceries for them. Or maybe help with laundry or house cleaning or more. Sometimes, they just need people to stop by and chat since they aren't up to going out and socializing.

When I was in treatment, I had a total of 16 chemo rounds over five months. The first four were pretty awful and my husband made it to all of them. But there got to be a limit to how much time he could take off from work. My last 12 treatment were weekly doses of Taxol and I started to feel better so sometimes when he couldn't stay, he would drop me off and my parents would pick me up. That worked for me but other people may not have the luxury of local family members to help.

I ran across another cancer blogger recently and on her blog she has posted a page on her blog about how to help her which basically sums it all up. The little things in life like going to the grocery store or doing laundry can get very complicated.

When you have cancer or other nasty ailments, life goes on and you have to cope with your life as well as your diagnosis. Help is always appreciated.

Please pay attention here

This is how to help a sick friend. If anything positive can come out of the horrible shooting in AZ, this list is it. I will summarize:

1. Know your friend
2. Make specific offers
3. Give the right gift
4. Call at night
5. Call weeks later.

This list is long over due. I can't tell you the number of things that have greatly upset me through my medical ups and downs.

- The 'friend' that came to visit unannounced at 8am on the morning after major abdominal surgery where I was expected to be bedridden for 2 days and an inpatient for 5 days. Even though I had requested no visitors other than family. She was in the hospital and thought she might stop by.

- The 'friend' who threw a party and introduced all the cancer people to each other so that we could bond. I felt like I was at the frat party at the beginning of 'Animal House' - as one of the losers.

- The 'friends' who expect me to reiterate all my latest health issues in detail every time I see them.

- The 'friends' who expect me to talk about knowing people who are dying from/have died from cancer and what I knew about their last days.

- The 'friend' who never stopped asking 'is that a wig or your real hair?'

- The people I never hear from.

My point is when people are sick, they aren't as good as reaching out to ask for things because they are too wrapped up in their own medical life lemons. And their needs have changed, their lives are different right now and they can't do the things they used to. Please read the article and think about how you can help others.

Yes, you can help

I don't understand this. It always seems to take someone famous to get sick or to die or to tell their story to make people realize that they could get it too and that they can help.

Earlier this week, Shannon Tavares who starred as Nala in the Lion King on Broadway died of AML or acute myeloid leukemia. She died because doctors were unable to find a bone marrow match in time.

Apparently now there is increased interest by the general public in becoming a bone marrow donor. Well, you always have had the option of becoming a bone marrow donor. This isn't different. Its just now a lot more people have become aware of it since she died.

I don't know I sometimes wonder if people live in a cocoon thinking that 'it couldn't happen to me' - whether its cancer, MS, car accident, house fire, or any other number of other 'bad karma events'. They are protected by this bubble of safety that will prevent it from happening to them.

Then when 'bad karma' happens to them or someone they know or admire, they realize it CAN happen to them. Then they jump on the bandwagon and want to help.

What they don't realize is that they always could have helped. They just didn't bother. There are lots of ways to help out. Do you donate to charities, do give blood, would you donate bone marrow, do you volunteer anywhere? Not everyone can do everything. My husband can't donate blood because he lived in Europe during the 1980s when there were fewer restrictions on Mad Cow beef but he does give weekly to the Red Cross through a payroll deduction.

Can you take a minute to think about how you can help others? If you are too busy to do something, can you donate money? Even $10 helps. If you have no money, can you help in your local school, hospital, or library by reading to children, usher at an event, donate blood or register for bone marrow donation?

Helping others isn't limited to money. It can be in lots of different ways. Its part of humanity to be kind to others. So yes you can help. Its just too bad that often someone has to die before people realize it.