I dont know that this is an appropriate heading for this posting but i wanted to just say how wonderful i think you ladies are with secondaries and how in awe i am of you all.
what prompted me to do this posting is meeting someone who posts on here and lives locally to me also my own mums attitude to a DX with secondaries.
One thing that did come out during my convo with Nicky was the lack of support groups for ladies with secondaries. Maybe we primary folk who are relatively well could take it up and push for more secondary support groups who knows when we may need them.
I am going to write to my local hosp and ask them what is available for secondary ladies.
Take Care all of you
Rx
Hi Liverbird
Thanks thats a grreat idea - maybe you can post the result of your letter for some of the ladies here, maybe thats a way more support groups could be formed,
I would say one thing - we are just normal people getting on with our lives as best as possible in the circumstances, nothing to be in awe of! I can say with certainty thats how i feel and I think some of the other ladies feel the same. We are no different from the women who have primary breast cancer (and i was in that club for 5 years) just have alot of extra extra crap to deal with and very little real support from the system.
take care
cathy
Hi Liverbird,
What a good idea. I’m a primary lady who is just about to start chemo so I will see what I can find out from my hospital. Interestingly, my new onc explained that my chemo treatment would be supervised by a nurse clinician as the doctor’ s time was spent with patients who had metastasis as their need was great.I thought then this is how it should be. Those with the greater need etc. Let’s hope more primary ladies join in. I’m at Christies by the way.
Trish
Liverbird, I appreciate your sentiments and concern and think it is great that you wish to promote the cause of support for secondaries. Thankyou. But would also like to add ‘hear hear’ to Cathy we don’t have a lot of choice in the matter do we?
Jenny
x
Hi thanks for that liver bird but we are just going that extra mile as my friend who had leukaemia put it!
Hi Patricia - I attend Christie too the nurse clinician Carol F told me of my secondaries She is excellent and in someways better than the doctors they all have a case discussion before they see you and on the Thomas Crowther research unit its pot luck whom you see in fact carol is the ‘constant’ amongst the more junior doc who change 6mthly I think. In fact I have never actually seen my consultant in person - see him about he looks young and serious the nurses on the research unit are excellent too as they too are a constant- so together with the patients I see every three weeks we have our own support group as we all have breast cancer mets on Fridays xx Jan
I’d just like to say that I set our primary support group up in 1996 and it goes from strength to strength but setting up a secondary support group (for me) is a completely different thing (and this is only my opinion). We’ve got round it by 5 of us meeting but it is a closed group and we don’t publicise the fact that we meet to others. I think I’ve mentioned before we have one lady who is a drain emotionally and has been for the last 8 months - she actually needs professional help rather than any help we can give her.
The psychological and emotional impact needs to be managed at a much greater level than with primary (you have breast care nurses to pick those women up who are struggling). Unfortunately we don’t have the luxury of metastatic breast care nurses so if someone is really struggling within a group how do we support them and also keep ourselves safe, especially knowing that in all probability we will, at some time, become ill or worse than our present state.
Breast Cancer Care are also looking at secondaries through their BCC Taskforce Panel and we, as secondary ladies, have the opportunity of joining the reference panel.
Thank you (as a secondary lady) for your posts and insights of those of us living with advanced cancer.
Take care.
Pinkdove
Thanks Liverbird,
Nice of you to think of us. As the others say, we don’t have any choice but to keep going and heaving ourselves over each new hurdle, in much the same way as those with primary bc. I’m really disappointed at the lack of support for secondary people. My local day hospice runs a brilliant 8-week course called something like ‘getting your life back on track after cancer treatment’ They do painting, music, speakers, alternative therapies, advice on hair regrowth, psychological support, etc. I was about to be put on the list when they found I was having a scan on my liver, and warned me that if it was mets I wouldn’t be allowed on the course. Now I feel left in the lurch, with no support. I’ve reached the end of chemo and am getting back to work etc, after 9 months and could really have done with something to help with that transition.
I’m just back in the ‘world’ and trying to figure out on my own how to go about living with this.
If it wasn’t for the support of the wonderful ladies on here i don’t know how i would have kept going.
Love to all
Jacquie
Hi Jan,
What a welome reply… I know this is going off discussion topic but I’m under Carole F too and I start on Weds in her clinic. I have to be absolutely honest, at the moment I am totally a nervous wreck. I can’t imagine how I am going to cope, but know I just simply have to. I’m going to join the Tact 2 Trial.
This must sound extremely wimpish to those of you who have secondaries and I apologize, but I’m not good at the heroic stiff British upper lip.
Trish