Reaching out

[Jane65]

Hi everyone, I'm jane. I've just joined, and am hoping to meet new friends. I'm 51, single, a Pom living in Sydney for a few years now.

i was diagnosed with follicular lymphoma in March 2016. For those (like me a year ago!) who have never heard of it, it's a very slow-growing incurable cancer of the lymph system. I have had 8 cycles of chemo, which got rid of a lot of it, then had 14 doses of radiotherapy to attack 3 remaining sites in my abdomen. I finished treatment in December 2016. 

I'm now on 3-monthly checkups, and am on a bit of a rollercoaster! I'm slowly easing myself back to work, and have some days that are pretty good, and other days where I just feel completely hopeless.

There's so much to come to terms with, isn't there? I have gone from being a high-energy workaholic to having chronic fatigue; I cry at the drop of a hat; I can't concentrate on anything for more than a few minutes; I seem to have lost a lot of my self-confidence; I don't get out much....... I don't know how much of the "old me" I will get back..... and, of course, I don't know how long I will have before IT comes back......

I am reaching out today to connect with others in a similar situation. I feel very alone sometimes, like nobody really "gets it", and I'm pretty sure there are lots of others who feel the same, so maybe we can help each other! I haven't found details of any support group meetings, so thought I'd try this way. I find it so reassuring to read about other people going through the same stuff as me - it makes me feel "normal"! - and think it would be great to meet new friends if anyone else feels the same...... 

Thanks for reading, and sorry if I sound like a complete woos! 

[CaptainAustrali]

G'day Jane

Although there's some good info tucked away in the forums here, I can't say there's much of a community that I've noticed.  It looks like a great many posts (some heart wrenching) go unremarked, and for the most part the pattern appears to be that a new person arrives, puts their story out there, maybe gets a comment, maybe not .. but doesn't come back.

Personally, I reckon it's because the site doesn't allow you to follow threads, or email you when a thread your following has been commented on .. or even provide a clear central way to see if your posts have been commented on - without checking them manually.

If you're interested in joining an online community, I'd look overseas .. there's a mega-community out of the US, all cancer sufferers and survivors, and they seem very collegial and helpful.  I've only used it in a "research if other people share my side effects" capacity, reading but not posting .. but if you wanted to join an active community, I'd look there.

Suggest google "CSN cancer . org" - CSN = cancer survivors network.

Forums seem hugely active compared to we aussies.

Best of luck, sorry about your diagnosis, keep your chin up !

[Katekat]

Hi @Jane65 and welcome to our community!

I can understand how you must be feeling right now, these forums and other communities like this are the perfect space as everyone has been or is going through something similar to your own experience. I do encourage you to have a read around here and reply to a few people, get some conversations going 

If you haven't already heard of it, our Connect program may be of interest to you. We match you with trained volunteers who have been through a similar experience to your own. You can contact our team at any time during business hours on 9334 1870 for a chat.

Thanks for reaching out to Jane @CaptainAustrali, we do appreciate it! 

And yes, you are correct that our site isn't as active as it could be as yet. This is actually a major part of my role here at Cancer Council NSW, to foster the community and help it grow. We have several things in motion with regards to this. I was going to post in a few weeks time but I think I will create a new post and see what you guys think, this is your community first and foremost 

With regards to being notified when someone is responding to threads, there are 2 ways of doing this. I can turn it on by default for all users but a lot of people may dislike that option. The second is that you can control this in your profile settings and in threads. I'll create a seperate post about this in a moment.

Kind Regards,

Kate

[Jane65]

I really hope the launch of the new-look online community picks up! I know there are lots of sites overseas that have more visits, but I am really keen to meet people nearby who are going through similar experiences. I find it hard to talk to my family and friends about some things...... I don't want to worry them, and I don't think they really know what I mean all of the time. So, please shout if you read this and feel the same! 

I have done a fair bit of digging and have found a group that meets up in Randwick once a month (organised by Leukaemia Foundation), and I've also found a Cancer Council Enrich program running in Camperdown that starts next week. If anyone is interested in either, please message me and I'll send the details! And if anyone is going to either, I'll see you there!