Keeping family and friends informed

HappySoul

Hi everyone,
Another newbie - routine mammogram in mid Oct, biopsy then diagnosed Nov 21 with invasive ductal carcinoma (13mm). Surgery planned for Jan 2 - lumpectomy with sentinel node biopsy then radiotherapy and hormone blockers after. I feel fairly well informed with whats going on and not freaking out too much (today anyway haha). 
My question is how do you keep everyone informed of whats happening? Is it worth setting up a blog? My husband is great talking to everyone but I'm not keen on going over and over it on the phone or when I run into people when out and about.. If anyone has found a blog useful can you steer me in the right direction of how to start one - thanks in advance

kezmusc

Hi @Jo-H,
Welcome to the forum lovely. 
I guess it depends on how many people you want to give. in depth information to.  Personally, that was my immediate family and one close friend.  I told two people at work, and well, that was the end of that...the whole place knew.  Word travels fast.
There are people who have set up blogs.  I can't help with that as I'm not very techie.  I have another acquaintence who announced everything in detail on FB which I found a bit odd.  It's just personal choice really.  
Some people will be happy if you say you're doing ok, some will probe for more info.  Totally up to you lovely.

xoxoxo 

CRM

Hi Jo,

In hindsight I actually regret telling a wide group of friends so early on because my phone didn't stop ringing for 2 or 3 weeks and I received so many flower deliveries it was insane (lovely, but too much!).  Your diagnosis sounds similar to mine (14mm, lumpectomy + radiation therapy and now hormone medication), but the final pathology result won't be confirmed until after you have surgery so it can be hard to answer all the questions friends and family will come at you with!  The attention I received was well-intended but I felt really overwhelmed.  It is completely up to you how you communicate this with friends and family but don't feel bad if you do decide to keep it small or if you don't answer messages/ phone calls. 

Best of luck x 

Sister

I found it too overwhelming at first and asked my husband to tell his family.  I told two very close friends from different friendship groups and asked them to pass on the news, be my conduits and ask people not to contact me.  Once treatment was more certain, my husband set up a blog page while I was in hospital and I wrote on this quite often having given the address to family, friends and colleagues.  I found that worked the best for me.  Even though friends would still ask how I was going when I saw them, they kept up with the nitty gritty of news from the blog and I wasn't repeating things umpteen times.  This meant that they also didn't feel that they needed to contact me all of the time to find out the latest and they could post comments on the blog.  I still put the odd thing up 16 months or so after active treatment ended but I have found now that the blog has become a very personal diary of an extremely difficult year, some of which I can barely remember.

arpie

My husband had stomach cancer 10 years ago & back then, I found it easier to do group emails to everyone every week or two - and letting them know that I may not get back to every reply.  So when I was diagnosed nearly 2 years ago, it was the easiest way of letting people know my own story - and it also became a bit of a diary of my own progression too.  I just asked that everyone make me laugh - as I am a total sook & would burst into tears at the drop of a hat if I had to keep repeating my story & luckily, most did.  

I found that keeping busy in the meantime is the secret - idle hands & all that - so I kept doing my fishing & ukulele playing - so keep doing what you love doing .... 

take care & all the best xx

Afraser

I told my immediate family (my 89 year old mother only when I could do
so in person not by phone, she lived interstate) and my work colleagues. The rest took care of itself - my neighbour when I ran into her after getting my very short haircut (turned out she’d had bc ten years earlier) and so forth. Friends when and If appropriate. Most passed the information on but as it was second hand, it didn’t occasion too many well intentioned but repetitious conversations. As I looked well and continued a normal schedule, it was a bit of a nine days wonder which was fine by me. As far as I was concerned, it was neither a secret nor a news event. People will mostly respond to the tone you set, so choose whatever  suits you best. 

Annski

At least for now I think it's best to keep only your nearest and dearest in the loop. Many find the responses of others very confusing and hard to handle. There is a way to go yet before you even know yourself what is involved. You definitely don't want to be dealing with other people's fears and anxieties. This is s scary time for most people and right now it's you that matters. But if you find you do want to do a blog, try Wix or Weebly, just Google them and see how you feel about trying them out. No harm in that. Some people find it good to reflect on later. But it's fine to be private for as long as you want to. All the best to you and feel free to come on here any time you need support or info or just a whinge and a moan. We all understand. 

 

arpie

I forgot to mention, @Jo_H
Before I had my surgery,  I only told the closest family initially, then closest friends, cos I knew I would blub bigtime otherwise when I saw them in the shopping centre (not a good look.)  My uke group (who I was seeing weekly) had to be told - & I told them to NOT be sympathetic but to make me laugh .... and they were terrific.  Being with them & preparing for a big concert 3 weeks after surgery (and not knowing if I would be attending it, as I lead the group!) was a big bonus - it just kept me SO busy! 

After the surgery, the circle widened & I was able to tell them that I was OK, not to worry etc ..... and an awful lot didn't find out til I sent out Xmas cards, 11 months later!!

All the best xxx

Lewi66

Hi

Yes the logistics of keeping EVERYONE properly informed is very tricky. The way I tackled it was to write a "blog" with the help of www.caringbridge.org - it's designed for sharing to many when you are unwell, not just with cancer.

I found it took the sting out of watching people's reactions, and those that wanted to know could read up on "the latest", those that weren't orientated that way could "opt out" of the blog environment. The writing process was very cathartic as well.

Also I now have a sequence of details that stay online, so if I ever need to retrace my steps or announce more information I just pick up where I left from.

there are probably other versions out there, but that was what was around for me at the time.

Good luck, and may you find a way through the maze/haze...

take care xxx

Brenda5

With chemo brain and everything, I can't even remember some of the good bits, just mostly the bad. I put a sort of diary on my own pc in a file and then after spellcheck etc, I copied it up on this forum and my facebook. I too had a lot of people pm'ing me on Face book but with my latest information on my wall, people got to openly type well wishes and I had less pm's to answer and less phone calls pulling me out of my sick bed. I just left it in my name but others have started their own secret groups to which I subscribe. That way not every acquaintance gets to know your private news.
The file on my pc has been a useful tool to look back on as a sort of diary of the time.

Anne65

@Jo_H Welcome aboard! It sounds like you are doing really well & have a good handle on what your immediate plans are so good on you for trying to remain as positive as you can!! I have just had my 2 yr anniversary & there are many of us who have had our surgeries this time of year. Not ideal but you cant change it! I came out 2 days before Christmas & still managed to spend Christmas day with my family 2 hrs away.
i too had invasive DCIS but no node involvement, with lumpectomy & rad treatment. I guess I knew early on that i probably wouldnt have to have chemo so keeping my cancer a secret was going to be easy as I wouldn't lose my hair. To this day, not many people know. I live in a small country town & know everybody. I knew they would mean well but I wanted to be able to go shopping & not be hounded by everybody or have some avoid me & I am so happy i did this. My close family know but my in-laws dont. I told my boss & my only co-worker & a friend that works in the local chemist so she could help me with scripts etc. I also had a friend who works for Breastscreen QLD & does mammograms so she was a wealth of knowledge for me. 
Everybody is different & as my cancer "journey" was very smooth, I found it easy to avoid telling people. Many find it good to have support from friends & family & to have their help with food, housework, driving, visits etc so it really depends on you & your situation as to how many you tell. Word will spread fast so be prepared if you do. 
There is good & bad in both so it is a very personal thing for you to decide. As I said, I am sooooo happy I didnt let the news out. My immediate family, co-worker & couple of friends have been all that I needed to get through PLUS the most important of all....THE BEAUTIFUL FRIENDS ON THIS FORUM!!!! Good luck & I wish you love & strength as you begin your treatment. xx
 

Sally_AS

Hello Jo_H, I was diagnosed in early September & found it exhausting repeating myself. I set up a ‘Whatsapp’ group, where I post short updates & photos. The group is made up of friends who are friends from work, cousins & in-laws. They feel like they are in the loop & it saves me having to reply personally to phone calls or texts. Particularly handy for when when I’m simply not up for telling the truth, especially when I’m down and don’t want the burden of juggling their emotions too. Close family & friends can handle the truth, so get they get the finer details and give me the support needed. 

HappySoul

Thank you all for your lovely supportive responses. Sorry it has taken me a while to come back to the forum but I appreciate you all taking the time to share your stories with me. I haven't worried about a blog at this stage & I also haven't put it on Facebook which I am so pleased about as I think I would have been bombarded with questions that I don't feel up to answering! The grapevine has worked well in my small town too & luckily the news has gradually filtered around to those that matter. Other than that I have a family Facebook Messenger group for my immediate family which has been great to give them updates after my surgery and follow up appointments - especially since they live all over Australia (Perth, Adelaide & Queensland). I also have a good friend who has set up a group message to update friends which really takes the pressure off me and my husband.
I guess there's no right or wrong way, we are all just figuring out how to navigate this as we go along.
Thanks again lovely ladies

StarGirl

Why do you need to keep everyone informed?

HappySoul

StarGirl because I care about them and if it were me I would want to know how a friend with breast cancer was doing. 

kmakm

It's different strokes for different folks. Some like to be very, very private, and some like to be incredibly open. There's no right or wrong. You just have to do what's right for you.