Really upset regarding some people posting some guidances

Jennyjam.    Hi Janet 500,I hear what your saying, as well as my cancer I also have COPD, listen not a good place to be,I like you listen to all the chat about ventilators and priorities and it is scary, I’ve just stopped them feeding me the bad stuff, I don’t know if you’ve got a garden Janet but this has been my godsend, I go out there and it’s a much nicer world, all daffies are dancing ,primroses are smiling and the shrubs are showing new life for another year, and to top it all wee bluebirds are in and out of the nest box,Ime so lucky  and will breathe all that  good stuff and my fight will be strong ,my love to you Janet ,and we will be strong in our own heads,with whatever makes us happy.

Hey Janet, 

I'm sorry you've got upset over some of the things posted, and I can guarantee you that it was no one's intentions to upset anyone. 

However, I'll also say that I don't think anyone posting the links is ready to give up. The tone of the threads I've been reading have been angry and defiant as people ask why they will be given up on if they get sick, or why their treatments aren't being continued at this time and what that might mean for their cancer progression. As the saying goes, forewarned is forearmed. So if they know they might have treatment cancelled or not be put onto a ventilator and why, they can fight it.

You will find that now and again there will be conversations and topics that some people want to talk about that others might find upsetting. That doesn't mean they shouldn't be talked about though, because this space is for everyone to talk about whatever is going on in their heads, with their disease, with their families, and generally with their lives. 

So whenever I find a topic that I maybe find uncomfortable or that I know I have no input into, I just don't read the thread from that point on. There's no point in upsetting myself when that's not what the intention of this forum is, but in no way would I want people not to post things that helped them. 

Hope that makes sense! 

Lass

Xx

Hello Janet500. I understand what you are saying but I think it is like me watching the news. If it interests me I will watch, if it irritates me I will switch off. I read posts here to understand what people are going through and I always wonder if I can help in any small way.

Lots of people on here want to know as much as possible, others just dip their toe in the water. My wife will not read anything about prostate cancer in the papers, good or bad, she just doesn't want to know whereas I want to understand what is happening in that area of interest.

I read some posts and cry, I still want to read them though. I do hope you can understand why people find this information essential to them. Of course you can disagree, we cant always see things the same.

Best wishes for your future.

hi  

Everyone deals with things in their own way and it must be hard to stay positive in the onslaught of information that's around. 

There's been so much fear and speculation around the government guidelines, I can understand why members would like to see them for themselves. I actually found them easier to read than some of the understandably emotional posts on here, some full of grief and anger.

We can protect ourselves by restricting what we read rather than trying to restrict what members are able to say.
You started the original discussion ‘chemo delays and prioritising patients’ by telling us about the guidelines, I know the threads sometimes run away from us, but I would avoid it if it's too upsetting.

Hi LassNorberry  I agree with ALL your comments, they are spot on. I can't understand why anyone would keep reading, if they thought a thread would upset them! Like some of the programmes on TV, within the first few minutes, you know if it is something you want to watch or not! You continue watching if it interests you and you turn it off or change stations if you think it will upset you! I can't see what the difference is here. Let the people speak their mind without prejudice here as that's the way it has always been, because it's a subject some won't like, is no reason to stop others have their say! You can't please all of the people, all of the time!

I have a pair of blue tits in the box in the garden, we have been blessed that they have been coming now for quite a few years!

Hi Janet

I'm afraid I agree with the rest. I have a blood cancer, MDS, and I can read about it or listen to others. It's a rare cancer, so rare that the shielding letter people at the surgery weren't aware that I should be classed as extremely vulnerable but I explained that's why I go for bloods so often to the surgery. The lady I rang to talk to about my letter told me that haemachromatosis isn't on the list. I know now that MDS meant nothing to them. Haemachromatosis is another rare disease that I have, it's due to a mutated gene in the blood, known as iron overload or Celtic curse. Undetected, it's a killer. Even when I know I have an extremely high iron (ferritin) count I'm not being treated because of my bone marrow cancer (MDS) I can't have blood removed when my body can't replace it. I feel I am being thrown to the wolves, which is going to kill me first? 

I can understand why you get upset when you read about choices. I don't have chemo, my treatment is a weekly injection which I give myself. I've had well over 200 injections now. So when I see posts about chemo, I am not affected but my word, I don't half feel sorry for those who do. Adopt an attitude of not reading those posts, stay around though and be supportive as we will with you. 

Man, I have the greatest respect for these guys, I have with you too Janet and if others want to write about the decisions that are being made then I back them as I will with you as well. It's late now, I was struggling with pain today and tonight because I didn't take my medication. My wife's in charge of that these days, because I have early onset of dementia. I've been referred and had one consultation so far until the Corona virus came, now they're postponed. I never gave it a thought until the pain and sickness arrived. We have Alexa remind us at 7.30am but that was ok until my wife was given paid leave to be with me because we're confined to barracks along with my son and she slept through the reminder.. She's cut up about it, but it has happened before which is why my wife took up the medication duties. I take 22 tablets a day, sometimes more if the right dose of tablet isn't available so it's made up of 2 smaller doses. We're determined to get through this by being extra careful and not doing anything that would put me at risk. If the virus comes to me, I've not much of an immune system to fight it. Need to stop, one of my long posts, sorry folks. 

Chin up Janet. 

Tvman x 

Hi  I hope you are feeling a bit better within yourself today and if the weather is good, wherever you are and you have a garden, that's the place to be, that's where I'll be, with mu husbands help! If it turns out to be wet then I'll continue clearing cupboards and drawers but I'd rather be out in the garden listening to the bird song. With our immune system not working because of treatment, I'm sure we are all a bit scared but you need to put it to the back of your mind and concentrate on something else!

In my opinion, no one but ourselves can ever take away our fighting spirit! We are all fighting for staying on this earth a bit longer with our families and loved ones! We are all in a similar boat.....baling out as quick as we can Hoping it will keep floating!

Hi

I rather feel I need to shoulder the responsibility for this one as I think I’ve posted most of said links. I am so sorry this has left you feeling upset and demotivated. It really wasn’t my intention but I can see now how my instinct to seek out and share the facts in the face of rumours hasn’t been helpful to you at all. I am sure there are others who feel the same but haven’t been brave enough to say so. 

But I can also see from other people’s replies that many others have found the links useful. 

So what’s the answer to this? I think it’s a bit too easy to suggest you stop reading conversations that upset you. The problem is you don’t know you’re going to be upset until after you’ve read them. Equally, I don’t think the community is best served by not sharing the facts. 

All I can do is try to be more sensitive about what I write when I do share information and acknowledge that not everyone will find it helpful. 

Keep on fighting, Janet. You are worth it. 

xx

Good morning  

I'm sorry but I'm not letting you take the hit on this one.

   started the original discussion by telling us about the guidelines, paraphrasing them and saying that incurables were to be dumped, a post I found very distressing. 

It IS a distressing situation that we're all in. As ever we will all react differently. For some of us that means sharing our fears and emotions, there's always someone who feels the same, and for others it means gathering as much information as possible in scary times we have no control over.

So while it's important that  is free to share her post, it clearly struck a chord with some people, equally we can't always know what might hit a raw nerve with other members of the forum and we can't then censor the replies.

Your posts are always sensitive, it's always clear where the links are taking us and several members asked for the information. You do an amazing job of supporting us and I always look for you responses.

xx

Hi Well, I'm so sorry Daloni but your last post is about the first one that I've read that I didn't click 'like'! This is because I agree with Tinalay!  Your posts are always sensitive and when you include a link to further information, we always know what the subject is because you tell us. There are lots of people, myself included, who look to your posts for information. I don't know how to post a link on the site or I might have included one myself. I believe forewarned is forearmed and the way to fight cancer or anything else is to be as well informed as I can be and my GP and Oncologist also know to tell it how it is! I know I'm not alone in my thinking!

I believe that once you have read one or maybe two posts in a thread, you have a good idea what it is about so then you do have the choice of reading it or not! Please don't fall on your sword just yet, we need you here as our Champion!