Cancer Support Groups

It is often difficult for the advanced or metastatic cancer patient to find a local support group.  Many support groups cater to those who were recently diagnosed with an early stage cancer.  They do not understand the reality for advanced cancer patients...and many don't want to.  We are emblems of fear to them.  When I lived in Connecticut, I was lucky to be a part of The Busom Buddies which was sponsored by the Meriden-Wallingford (Connecticut)  branch of the American Cancer Society.  Although I was the only stage IV person there, this group was a bunch of sage, funny and helpful women who supported me and helped me along the way even though I was in my 30s and most of them were in their 60s or older.

I had hoped to find a similar group here....but it seems that in person support groups are harder to find...a pity I think as although you may know people who have had breast cancer, the collective experience of 10  - 20 women is far better and in the case of the Busom Buddies, we had a social worker assigned to us to facilitate and she was just great at making sure we stayed within our boundaries or had the clinical material to point us in the right direction if we had specific concerns or problems.  She was also associated with the local hospital which was a great help.

Here, in the Greater Dayton area, I joined the Noble Circle .....but lately I have been feeling alienated from that.  This was their brochure for their fundraiser the "A Wear Affair"  which was held this last weekend.  I didn't go.  Primarily, the name for this function turned me off.  I am not thriving.  I'm in the trenches and giving it all I have.  Their byline which is above no longer seems to fit.  Thriving? Hardly.  In my group of 15 women, five died within the first year.  Another member who is in the same boat as I am has said she's not going to be involved much as she has "Noble Circle Regret" because we have lost so many....and also, it often seems that even though there are members who are fighting advanced cancer with this group, we are in a minority.

Still....it is important to have some contact with others who are going through this....and there are several very good on-line communities for people who have advanced stage cancer.  I hope to be able to give you a whole list of links soon..but I will give you a couple and hope you can join in and add more.  I prefer to go to site which are monitored as there can be some really way out people and there are those who are "snake oil" salesmen who are advocating "cures" which in reality are just a profit maker for them...or those who can get very negative.

Here are some of the ones which I think are pretty darned good:

http://www.metavivor.org/Support.html

This webpage talks about the various support groups sponsored by Metavivor, as well as how to start your own and what to look for in a group.

http://www.advancedbc.org/

http://www.cancersupportcommunity.org/MainMenu/Cancer-Support/Online-Support-Groups.html

http://community.youngsurvival.org/

http://www.cancercare.org/patients_and_survivors

http://www.inspire.com/

http://cancerhopenetwork.org/index.php?page=findamatch&gclid=CLTFl4rV1LUCFUVnOgod0k8AxA


http://www.healthcentral.com/breast-cancer/?ic=1102

(Health Central's "support group" functions through their share posts.  PJ Hamel and Phyllis Johnson are the two people I have had the most contact with....and I thoroughly enjoy them.)

Even so....you will find that from time to time you will need to step back, or avoid some posts.  We have cancer.  Some of us won't make it....and that makes it hard.  You really do mourn these people when they die.  However, I always feel grateful that I got to "meet" them.

If you know me...you'll know that I am quite fond of A. A. Milne's Winnie the Pooh.  Even though it is approaching 100 years since Winnie the Pooh, bear of very little brain and more stuffing that he ought came upon the scene, Milne had wonderful insight and the book is filled with nuggets....

“How lucky I am to have something that makes saying goodbye so hard.” 
― A.A. Milne, Winnie-the-Pooh

Side Effects and Drug Information

When faced with "choosing" new drugs, sometimes the fear of side effects can be overwhelming.  In addition, once you've started a new drug, sometimes it is difficult to determine what is a side effect of the drug and what is caused by something else.

I am preparing to figure out what new chemotherapy to start...and I must admit, I hate the fact that I have to do this.  It seems sort of wrong that the common thing today is to have the oncologist give you a selection of the drugs and.....you pick your own poison.  I don't mean to be negative, but it is strange.  I understand that it IS a good thing for the patient to have input as well as to feel like they are a partner in the treatment.  However, it is scary that we, who have no idea what it is going to be like, or how to interpret the cancers we have in order to choose the best thing, have to pick one.  Sometimes I feel rather much like Alice in Wonderland when she is presented with the vials and is told to pick one.

I would like it if somehow we were able to test the drugs against our particular cancers and choose from there....and in fact, in other countries (as well as here) there are ways of doing assays to rule out drugs which are likely not to work.  However, as I have noted before, that won't work for me as I have bone mets and no way of taking a live sample at present.  In addition, I don't have the money right now as this isn't covered by insurance.

Sometimes when you read the possible side effects you are more frightened than ever before.  The list of possibilities is daunting.  Downright terrifying.  However, all of the chemo-therapies have pretty prodigious side effects.  It is easy to think that you are going to have ALL of them, or you are going to have the most serious.  Usually, the patient information only lists the most common side effects. Instead of looking at that, I usually go to the paper inserts which are in the boxes called "highlights of prescribing information." This is exhaustive and truth be told, I sit and read it at the computer as much of it is written in medical jargon.  For instance, I learned that "epistaxis" means nosebleeds.

One of the best things about the inserts is that there is usually as section which lists ALL the adverse reactions, with the percentage of people in the study which reported them and listed against those who received a placebo in the trial.  Many side effects are rarer....for instance some of the side effects I had from Xeloda were only reported in 8% of the patients who were in the trial.  That didn't mean that it made me any less happy to HAVE those side effects, but it is worthwhile to note that for most, this side effect wasn't likely to happen.

These sheets are difficult to read.....but I think they are worthwhile.  It might be useful for you to read them and highlight areas to talk with your oncologist about so that you can understand them.  If  you don't have a sheet included with your drugs, or want to find the sheet for something you are contemplating taking, search on the name of the drug and "prescribing information" ,  for instance "Xeloda Prescribing information."  check out the most likely, looking for the link.  For Xeloda, I found this:

http://www.xeloda.com/treatment/side-effects/managing

Down at the bottom of the page is a hot link in bright blue which says  "Please see complete Prescribing Information" with the "prescribing information" being in a bright blue hotlink.  If  you click on that, you are taken to a Genentech download site which will give you a PDF to read.  Take a look...and have a dictionary handy.

Intent

Isn't this piece of graffiti neat? Sometimes I have some trouble with graffiti.  On the one hand, I admire a lot of it for the artwork...on the other hand, it bothers me that people are defacing other people's property.....and of course, not all graffiti is artistic.

When I wrote the post about the Platitudes....I was trying to offer some different reasons for the responses we get from friends, family and acquaintances, as well as offer some reasons for them saying them....sort of to help both sides out.

However, twice I have been surprised by friends of mine.....I forget that they read this too.  At Christmas, one apologized for saying that she had completed two things on her bucket list...That didn't bother me at all...and it is only when I am in a mood, or the circumstances in which it was being said that it bothers me.... Last week, one of the sweetest, dearest friends I know apologized for saying that I was going to be OK....Not necessary.  I understand what they area saying.....it is only sometimes, especially with family members, that I need them to understand that where I am is a very scary place....but if they want to offer the affirmation that I am going to be OK..then that's OK.

There are other things to say....other ways of looking at it....I hope that we can explore and find the way which is best for us.