My saved pages
I see you're new to the community and that you have been very active today.
Generally, people come here to link up with people in the same situation as them. We listen to each other and provide a safe place for sharing our experiences, fears, worries and good news too. For example, I'm a member of the womb cancer group as I was diagnosed with womb cancer in 2014. The group has been invaluable help to me over the last few years and I've made some firm friends. I'm also a community champ - a trained volunteer who supports the team of moderators.
I don't have a clear idea of what's going on for you or what you might be looking for. Can I suggest that you have a look at the guidelines (up a bit and right a bit on this page) and then look through the groups tab at the top of this page to find the right group for your situation?
I'm happy to answer any questions you might have BUT my iPad is running out of charge and I'm running off to choir soon so it won't be immediate.
I do hope you are ok.
Hi. Thank you for your welcome. I'm sorry that you've had to tell five (I think) people that I'm not a nurse. I went through the unanswered questions bar for a but and replied to ones I thought I may be able to offer a small amount of help. I'll pay more attention and find the part where the post would say if it's for a nurse or the general community.
I'm wanting to help people. If I can. I have a whole host of health issues myself, and know plenty of people that do too, including my Dad, so want to offer support and give people someone who'll listen to anything they want to say
I'm sorry for the trouble I've caused
I'm okay thanks. I hope you are too
Hi Joseb. I think it's great that you want to help people and give them support but I have a few problems with the way you're going about it.
The way this community works is that we talk from our own experience. As you are not a doctor or nurse speaking officially, if you talk about something but you don't have your own experience of it then the person who asked has a right to be angry or upset. In other words they might feel that they've been dudded. For example, you replied to a post in the breast group about itching after mastectomy. If you don't have experience of it, or know someone who has then what do you really have to add to the conversation?
There are a lot of people in this community who are travelling a very difficult road. Don't make it harder for them.
Thanks for replying and thanks for the apology. As Kacang said, many people here in this community are going through some really tough stuff and this needs to be a safe place.
I think the urge to help people is great but if you are not someone affected by cancer (either because you or someone close to you has a diagnosis), this is not be the right place for you. There are lots of ways to get involved in Macmillan's work, though. There are lots of volunteer jobs that need doing, with fundraising a really important role. You can see more opportunities here in the pages "get involved".
I hope you are able to find a way to help out and I wish you the best with your health problems. And thanks for asking after me. I am well currently.
All the best
Hi Kacang and daloni. I have a frontal lobe brain tumour, a tumour on my left bicep, partially uncontrolled epilepsy (the grand mals have stopped, but I have petit mals, and barely anyone knows what they are 'cause I'm not on the floor shaking. They just think I'm drunk or on drugs) and all of the issues that go with those. Namely feeling like a burden to my family and the few friends I still have, that I don't contribute anything to the world, a terrible memory, the inability to donate blood, people always putting my health before me which either leads them to feel sorry for me, assume that I can't do anything, or that I need to be spoken to really slowly etc so I can understand. Some people think there's nothing wrong with me and that I'm making it up 'cause there's no physical symptoms. I feel that I'm treated like a child 'cause of how people are towards me. Including my own family. In the case of my family I know it's 'cause they care, but being a thirty year old who can't go out by themself, and who has to have their Mum with them when they go to appointments 'cause I won't remember what was said otherwise isn't good for self esteem. I also have both medical and circumstantial depression. And there's a whole load of things that go with that. My dad had a brain tumour (and a whole load of other things that I can't remember 'cause of being ten) and when he had surgery he was then in a coma for six months. He survived, but for what I think was around a year could only growl like a bear. To test the feeling in his arms and legs the therapist thought it'd be a good idea to have my older brother and me to poke him with Stickle Bricks. He's been disabled and had brain damage for two thirds of my life. My sister had a very large tumour removed from the back of her neck last year, and was very, very close to dying from it and was extremely lucky that it was caught in time. My uncle on my Dad's side had a tumour on his spine and has been partially disabled since then. My ex-fiance's Mum has more problems than I can remember. I know she has cancer somewhere though and has lupus and about five other things. I know someone who's had a mastectomy and a hysterectomy. My Uncle on my Mum's side had cancer and tried to commit suicide because of it, but he died last year before he succeeded with his chosen method. I know multiple people with both medical and circumstantial depression who I support and help. I have both types and used to self harm but got past it and figured I could help other people who are effected by their various health issues in that way. I have far too many friends who've been in abusive relationships and confide in me and say that I'm a good listener and am good with advice. Another of my friend's Dad died from lung cancer, and they said I was very supportive. A person I used to talk with a lot at the village pub died of a brain tumour, and we used to talk about what it was like 'cause of being in the same situation, I have an amount of survivors guilt over that.. So, yeah, I know that I don't have direct experience with some of the issues I've commented on, but I figured with everything else that's happened I was in a position to listen and support people
*I've edited it to clarify a few things, add details I'd forgotten and correct a few spelling mistakes **I've also removed some information about my best friend
Lordy! That's a lot to contend with. It sounds like you've dealt with a lot over the years. Don't be afraid to seek support here yourself. In my experience the best support is mutual and based on a shared experience.
So maybe those of you who came down so hard on Joseb for being well intentioned should in turn apologise to Joseb as gracefully and readily as Joseb has done to you.
Robin12 - Thank you. Reading that has really meant a lot to me. I was incredibly demoralised after seeing what was said. After finally getting the courage together to sign up and try to help people outside of my circles and it being met with that response knocked me back a lot. I was so very close to not coming back
Kacang and daloni - I fully understand you have jobs to do and want to keep the environment safe for everyone. and yeah, me posting in the nurses questions part was stupid of me, but I saw the unanswered questions part, went back through ten pages and wanted to support the sixty people who said things and hadn't had a response. That overtook me looking at things properly before typing. I'll make sure I'm more vigilant in the future
daloni - Yeah. There's been a lot of other stuff too. My main goal is to try and help others, but I can see your point about mutual support and shared experiences. I'll make sure I respond to peoples threads in a better way. And make sure I don't say things in threads that aren't public. Thank you :) You take care too
Hi Joseb I am sorry I was a bit hard on you but my only concern was to protect the vulnerable people here. I am also so sorry to hear you've had so many health issues. Life must be tough at times.
You are very welcome here but may I suggest you find a group where you feel you can best relate to what others are going through and focus on that, rather than trying to work across all groups. As daloni said, this forum works best where people are providing mutual support. Focusing on one group doesn't mean you can't comment in other groups, where you have something to add. We all do it - my focus is the breast group as I've had breast cancer.
Perhaps you could consider joining the brain tumour group, if you haven't already, as your experience will be of real relevance and support to others.
Wishing you all the best.
I'm sorry that you felt demoralised. I was hoping to steer you towards getting the best out of the community - all I managed was to leave you feeling down. I do hope you will be able to reach out here.
And thanks Robin12 for your pointed intervention.
Are we all good now?
No problem. Most people on here are here for help or to help - quite often both - and occasionally, with the best of intentions, wires get crossed. I am pleased to see that you have now received what seem to me to be some helpful, conciliatory and constructive responses and hope all goes well from now on.
Hi all. Yeah, things are all good now. I'll focus on one or two groups and pay attention to what I'm doing and not let my fingers do more work than my eyes
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