Hi Marilyn
I went to Macmillan’s ‘Making the Cancer Survivorship Agenda a Reality’ on Friday in London and none of it was aimed at us - I raised this with the Head of Healthcare who was there.
There was absolutely no mention at all of palliative care - it was all about ‘when treatment finishes’ and agree with you that our needs aren’t met.
Pinkdove
Hi Pinkdove,
Good for you. With reference to the Macmillan event title, we are the ‘reality’. We have secondary cancer, and we are an afterthought - if we are lucky.
Cross Jen (wish I could get out of cross mode…)
I too belong to this wonderful off board support group - what I would have done without my friends from the group I do not know - I have joined a few mini unhealthy living days, its such a fab group not all doom and gloom, we are a real mixture of people that thankfully share a GSOH despite what we are all going through, we share information, tips on dealing with chemo, worries, and this has helped me turn into a more confident person dealing with this illness, I know what I’m talking about when going to appointments, because I have had 1st hand advise from the group. I switch on and off when I feel like it, your NEVER obligated to join in anything you dont want to do or descuss. We all look out for each other. I think its a real shame that we are not able to invite people who could do with little bit of extra support to join us and keep our group circulating, as others said we have obviously lost some of our lovely friends on the the way, be if feels good that we have been able to help them in there darkest moments. I have found the whole new way BCC forums work now so confusing, In the old days things where a whole lot easier to understand…How am I ment to offer support to somebody I know nothing about ie the removal of the profiles, there are so many titles now I dont know where to go.
Anyway BCC I was probaly one of the last ones to get in an off board group - I really cant stress enough how lucky I am and how unlucky some of the others that are on your board are - tells us what to do, to help new joiners who are desperate and need help, I dont often come on here anymore, mainly because its too confusing.
I hear this topic come up a lot it would be nice to get some positive feedback.
Thanks Amber
I too am part of this wonderful private group of ladies and am the Pennsylvania Part of the group. When I first was dx with secondary BC I was a lost soul, looking for anyone who understood how I was feeling. I searched the web and came to this site. I didn’t even know at first that it was a UK site. I wouldn’t of cared anyways because I was looking for someone anyone to respond to me. My first response back was from this site and then after a few weeks I was invited to join the private site of a wonderful group of women. I have only had the wonderful opportunity of meeting one of these ladies, but long to meet them all because they are my sisters!! Here in the USA the support systems for secondary breast cancer are also lacking. I don’t know what I would do without my sisters and only wish that more could join us.I don’t understand either how you have allowed some postings of email adresses to remain but edit others. FAIR is FAIR!!
Just wanted to add that I too am part of this wonderful group of friends. I had been chatting to a lady on BCC forums who lived locally to me and we wanted to meet up for a coffee and chat so we were both invited to join the group and were able to exchange details and to meet each other, sadly this lady has now passed away but it helped both of of us to be able to meet. I have since met up with other ladies from the group, who incidentally are also very well known on this forum. I feel very lucky to have contact with the other ladies in our group.
It is important for many to be able to meet others in a similar position as we have seen from the meeting arranged openly on the Liver Secondaries thread. I personally do not see that being able to access other support groups is in any way a threat to BCC, many ladies who are members of other groups continue to post on BCC forums, it is such a shame that BCC do not allow us to contact each other apart from the ‘not’ private messaging service. We have also been promised on may occasions that the profiles will return but sadly this hasn’t happened.
As to the problem with the live chat, I have not joined in this for a long time now but can understand the distress that newly diagnosed people may feel if they are excluded because there are too many in the chat room, the facility should be open to everyone who has a need for it.
Sxx
Paddy, I agree with you that being able access other support groups is not a threat to BCC. I admit that I haven’t come here as much lately,but it doesn’t have anything to do with belonging to another site. What has stopped me from coming here is BCC itself with all the restrictions that have been set forth. I also greatly miss the profiles and being able to contact someone personally. The clencher on being upset was Live Chat for me the other night, I still can’t believe that people in need were shut out. I hope that things improve soon. Funnyface
I agree that you really can’t overestimate the value of a good support group. I found a group of friends to meet with through a Macmillan living with cancer course. Most of the group has secondary BC, but not all - there are are two guys with other cancers - but all of us have a ‘no cure’ prognosis. We all found getting together such a lift that once the course was over we have continued to meet for lunches and an occasional drink and a lot of laughter. I confess though that I’d dearly like to be part of a local group of women with secondary breast cancer - the unhealthy living days sound wonderful. So - any group out there looking for recruits or planning an open meet - I live near Cambridge, like a laugh and a drink from time to time …
Manon a group of us meet up in Grantchester .
Moderator is it ok to send our email addresses in a private message?
Belinda…x
Hi Manon…have heard I can’t email I’m afraid but I’ll keep you posted…we hope to meet up March, April.
I will then send you a private message and let you know time and place.
Belinda…x
BCC, you surely now appreciate that those newly diagnosed with secondaries desparately want to meet up with others in a similar situation, face to face?
Tuesday Live Chat isn’t good enough even if the room allowed enough people in.
You have Healthy Living Days for those with primary cancer, so in all fairness, we should get something similar. Saying that anyone can go on a Healthy Living Day is not being realistic. We know full well those those with primaries are terrified of meeting those of us with secondaries and don’t want to hear what happened to us. Nobody wants to be treated like a leper and that’s what would happen if someone with secondaries went on a Healthy Living Day.
I’m not really asking for myself any longer because I’m now very frail and probably couldn’t attend. The same can be said of many of the original group who asked for a modified Healthy Living Day many years back. Others, unfortunately, are dead.
After years of inactivity isn’t it time you arranged something useful and pleasurable for those newly diagnosed with secondaries? The money donated to BCC is supposed to be for the benefit of ALL with breast cancer and that means us too.
Holey.
OMG - it took me over a year to pluck up the courage to meet the girls in my support group (no offense to the girls) but BC took every bit of confidence away from me - its not like you can just pop along when you feel like it, we all made sure we knew each other well enough that we have things about everyday life to talk about. We also live in every angle of the country you can imagin, so it takes months of arranging to get us all together at a suitable location!
I never used to get so stressed about how little I feel BCC do for 2ndry woman/men but I can really see that people are starting to bang there heads against a brick wall.
I have raised a lot of money for BCC and up untill a while a go did my monthly donations to help keep BCC going, we really dont seem to get much in return? this is why we as a group decided to make a side group for US. you know those scary people that have secondry BC. The section that a lot of people dont even want to look at. We are a minority - you have ways and means of keeping BCC circulating and if people feel isolated and want to descuss stuff privatley then they should be allowed - its an invasion of human rights.
Hi Belinda
Saw your message on the other thread - I look forward to hearing about your next meet.
all the very best
Manon
BTW my real name is Barbara
Hi everyone
Well this has certainly turned out to be an interesting thread. In the defence of BCC I attended the first secondary breast cancer day held last feb in Teeside with a follow up day 6 weeks later. There were about 10 of us some travelling from Hull. It was an interesting day but most was gained from talking to each other. Unfortuneately we left without giving each other contact details which was a shame. There was to be another 2 day course this month but it was cancelled. I was initially told that it was cancelled due to lack of interest but then was told it was due to a number of things including lack of staff to run the programme.
This certainly seems to be an area where things a sadly lacking. Apart from seeing my oncologist and the staff at the chemo unit I have not had any other contact with any other professional e.g breast nurse or recieved any support apart from anyone apart from areas I have sought out myself.
On a more positive note. I have contacted Mills this morning and we are meeting for coffee next week. I am really looking forward to it.
If anyone reads this who attended the support day last year at teeside I would love to know how you are getting on.
Maddison
I am looking forward to it as well. Now we are 2. Hopefully this is the start of something big!
Hi everyone
Well I met up with Mills last week and we talked non stop for 2 hours. Meeting again soon for lunch. I felt it went really well. Lots of things i common and it was great to talk to someone in same situation as myself
Also looking for others to join us. so if anyone in the North is interested please get in touch. I’m going to start a new thread with this in mind.
Maddison
Hi All
I have found this a really interesting thread.
the reality of cancer as we know alot of us get secondaries and I mean alot, everything in the media is geared to ignoring this, I was well aware of the possibilities of secondaries despite my relatively good progrnosis yet virtually everyone I know was astounded especially my relatives and my OH.
I have looked for help and support and have found that there are no secondary groups in my area…I have looked for counselling but it is on a limited basis, possibly there is a something that is in a totally and utterly inconvenient area. I looked on the BCC website and there was something about SECA in manchester…nothing in London. But i found out some really positive and helpful information that i met on the liver secondaries thread.
What is so obvious is that we need to meet and we need to feel that BCC is addressing the needs of the large number of women with secondary cancer as it is a completely different experience from a primary cancer. I tried to make this point on the employement forum and hope that it will be taken up on their policy launch.
anyway I just wanted to post my agremeent with all the ladies here and I would really like to know BCC plans to boost support for women with secondary cancer.
Cathy
Hi Cathy
I think you’re right in that we don’t get the support emotionally or psychologically as it’s all geared up for primary breast cancer.
I set our support group up in 1996 for primaries but having lived now with secondaries for the past 3.5 years it’s highlighted to me how different our needs are. I still run the primary group but there are 5 of us with secondaries but this time round I don’t want to set up another group for secondaries as I feel that we could have people attending the group who aren’t good psychologically for us (which sounds really mean) but part of it is about looking after our well being at this stage and if we did set up a local group I would want a psychologist or psychotherapist there to help those who are really really struggling.
I think these get togethers that are being planned like the London one and the various regional ones are excellent as it’s not formal, just a get together to have a chat and hopefully a laugh and share some common interests.
Things are beginning to change I think but like everything, it’s a slow old process. There are very very few secondary support groups as well as very few secondary breast care nurses.
Pinkdove