So I've been a longtime fan of Alacrity the terminal emulator and for good reason I feel it's been a very good terminal emulator for me Basically since the time I started using it. I've had no problems with it really whatsoever I know a lot of people don't care for it because it doesn't Have certain features, but I've always found it just fine I don't find it slow it has all the features that I want and I've used it for so long that my configuration file is Exactly the way that I want it, but recently I have been having some problems with Alacrity Namely that when I use Ranger and I want to have image preview working It doesn't actually work and I don't know if that's a problem with Alacrity or if it's a problem with uberzug or whatever It's called whatever it was. I couldn't get it to fix even after trying to do some trouble troubleshooting on it so I ended up looking for alternatives and While I was spelunking my way through the Ranger configuration file I noticed that kitty has a built-in option for image preview You don't have to have any Extraneous application in order to get it to work. So I decided to give kitty a try now I have used kitty before in the past a couple times actually and Honestly, the thing that has always turned me away from kitty is the Configuration file because if you've ever seen the default kitty configuration file and especially if you've opened it in Vim You'll know that it starts off with everything folded now the very first time I tried kitty I had no clue that Vim folds even existed I had no clue that that was a thing and I had no clue how to Unfold anything in in Vim. I looked at it. I was like what the hell is that? Well since when does Vim do this nonsense, right? I had no clue, right? I was completely lost now. Obviously since that time. I've learned more I'm more of a Vim user now than I was back then and I know how to unfold Basically anything that I want inside of them if I need to I still don't like them fold It's probably my least favorite feature of them out there, but you know, that's kind of beside the point So that's the reason why I've never actually used kitty in the past is because I really didn't care for the configuration file the way they do it is by basically putting all of the kitty documentation right inside of the configuration file and While I don't mind comments inside of a configuration file. I think that they can be useful I don't want it to be a novel right the default configuration file for kitty is something like four or five maybe even six thousand words maybe even more and it's just a really long configuration file and the vast vast Majority of that is comments. It's the basically the entirety of the config the kitty documentation Right there inside of the configuration file and it always drove me nuts because I prefer a more minimal Configuration file with a really good man page now kitty has a good man page It also has spectacular documentation on their website So the fact that they kind of decided to do double-duty and have all that stuff inside of the configuration file Always just kind of put me off on the wrong foot But I decided I was going to try to look past all of that stuff and for the last week I have been using kitty as my default terminal emulator on both my main machine and my standing desk Now I don't use it in my VMs because my VMs I use Tile X but Everywhere else I've been using kitty and I have some thoughts. So first let me show you what my kitty looks like So we're just gonna go ahead and go here. This is kitty and it looks like a terminal emulator You know, there's nothing special here in terms of look and feel I will say that it works fantastically well with pot pie wall So if I wanted to change to a different wallpaper, I could do that. So let's just you know change to I don't know It doesn't really matter. We'll change this one here and there we go Well, it looks like phenomenally like the last one Let's see if we can terms out all of the cyberpunk wallpapers I have look kind of the same cyberpunk leases the sit on that one will work. Yeah, there we go So as you can see kitty looks very good with pie wall enabled It also has a ton of built-in color schemes So if you wanted to use kitty But you don't want to have to mess around with changing the color schemes in the configuration file You can get to a whole like something like 700 different color schemes or something like that Some astonishing number of color schemes and you can change them right inside of the terminal. It's very easy So that is nice. I don't use it up because I use pie wall But that's one feature that I found was really cool now as you can see in my scratchpad here image previews work very well in ranger and that's because kitty has that kind of stuff built right in which is nice It means you no longer have to go searching for a third-party Application or plug-in in order to get image preview to work inside a ranger I've been using uberzug for years, but that's no longer being maintained and it's very not stable across different distributions It works fine on arch. It doesn't work fine on fedora half the time It I've had problems with it on a boon too So uberzug is always a big issue for me and it's been even more so since it was abandoned now There is another option for image preview instead of ranger w3m works, but that is very Not that great if you were to move the cursor at all half the time the image would disappear It's not fantastic, but with kitty it has image previews built in. I no longer need that third-party support It works very well. That's the main reason why I decided to switch to kitty once once I did Switch to kitty. I discovered something that made my day now Alacrity as far as I'm aware does not have tab support It would shock me if it did and if somebody in the comments sections Yeah, Alacrity has tabs and you never discovered I feel really foolish, but I don't think it does kitty However does have tabs if I control T now I've changed the key bindings So your key bindings may differ if you use kitty, but as you can see down here along the bottom I now have tabs and I can actually click between them if I want or I can hit control tab And it'll switch between them so I can run h top here and I can switch back and forth between these two tabs and That's awesome. Everybody knows who watches my channel knows that I love tabs right now I have something like 230 tabs open in Firefox. It's just don't judge me. I'm doing a whole bunch of research for project So half of those will go away, but the point is I have a ton of tabs I love tabs and everything if you see my file manager. I have tabs open in my file manager constantly. That's crusader It's wonderful. You should try it the fact that my terminal emulator has tabs is awesome Now, I know what you guys are thinking There's our there are a ton of terminal emulators out there that have tabs enabled or have tabs support So if I open up like Tilex or something, I think I have Tilex installed Yeah, Tilex has tabs support so I can open up another tab here in in Tilex and it works just fine and You know, I expect there to be tabs in a GUI terminal emulator So like GNOME terminal or console or whatever both of those are GUI terminal emulators And I expect them to have tabs. This is not a GUI terminal emulator This is a regular terminal emulator that doesn't have any GUI support The fact that it has tabs built in really freaking cool Now I understand the vast majority of you are like Matt what that what is your obsession with tabs? See the thing is is I like things to stay open.  It's not a healthy way of using my computer I understand that I've talked about my tab hoarding problem in a recent blog post. I can't help it It's just kind of the way that I work now. I don't have, you know, like hundreds and hundreds of tabs open in a terminal I have right now four that I've been using. I have my one that I've just been messing around with sxhkdrc here I have my kitty configuration file, which I'll show you here in a minute And then I just have a blanket blank tab along with my ranger I really like kitty to be honest with you once I managed to get the configuration file Down to an unreasonable looking thing, right? This is my configuration file I took out most of the comments the only place where I did not take the comments out were the keyboard shortcuts I've left those because I still want to go through and do some configuration stuff here I've left all those comments there for now But for the most part I've gone and taken out all the the comments and documentation from The default configuration and made it my own as much as possible Now you can source other files from here So if you wanted to source a color scheme, you could do that Like you would do in a yaml file for a lagerty You could do that as well And it's just a very easy to use configuration file there's nothing All that you know special here It's just a You know a setting and then a value a setting value pair a key pair I think it's what they call them and it's just very easy to do And because the default configuration file is so well commented You know Despite the fact that I don't really like all that all the all those comments It's very easy to know what it does And that's the thing about kitty is that it has a ton of customization And configuration that I haven't even scratched the surface of yet So on their website where the actual documentation lives You can find all this customization that you can do including different window layouts because apparently Kitty can be a tiling window manager if you wanted to You can change all the normal terminal stuff like scroll back and mouse and stuff like that But also has extensions things called kittens Now I haven't seen any kittens here that I particularly care for other than the Changing of the colors all the rest of these don't really do anything for me But the fact that it has extensions that you could theoretically build for yourself is pretty cool Kitty has just a ton of different options Like I said that I haven't even scratched the surface of yet So over the course of the next month or so I'm going to definitely dive into more of these options and stuff like that So that's going to be something that's going to be entertaining for me for quite a while because I'm a nerd And I like to do most of my work inside of a terminal emulator. So Uh, give me some give me a new toy to play with a new toy to customize And I'm going to spend a lot of time with it in terms of speed and stuff like that I don't notice any difference between kitty and alacrity They both seem equally fast to me, but I don't spend all my time compiling things And building code and all that stuff. So anything that is resource intensive I really wouldn't notice because I don't do a lot of that stuff in terms of running actual programs inside of the terminal I've not had any problems. I've been using nano now for a week with fairly large documentation And articles and stuff like that that I use for work And I haven't noticed it being slow at all now I never noticed alacrity being slow at either when you when I was doing those things. So Whether there's actually a performance benefit for kitty. I'm not sure. I haven't seen one also. That's not how you quit quit nano for F's sake I've been using it for a week and I'm still doing ZQ and colon wq and half the time I want to move down in a document. I'm using hjkl in order to move around It's a week later. I'm still not okay with nano, but that's for another video. Good lord Anyways, I'm switching to kitty I don't have a lot to say about other than I think that it's really nice And I'm going to be spending some more time with it I do want to say that the number of options that it has is kind of overwhelming even for someone who enjoys customization It's not a simple terminal. Now the defaults seem to be pretty good So if you don't want to delve into the customer, you know the the configuration at all you could just use it It would be fine And then you can do the documentation Maybe learn how to change colors or something that if you just only wanted to do that You could just be that type of person and be happy I'm the type of person who wants to configure stuff So it can be quite overwhelming if you find go in and find that there are You know a thousand different options that you can mess around with I like that But like I said, it can be confusing one thing I will say is that it is the documentation is exemplary So if you have any problems Chances are in the documentation somewhere It's going to tell you exactly what you need to do how to fix the things you need to fix How to customize the things you want to customize and so on So that's it for this video just a short one on on kitty I think that it's a really good terminal emulator and I'm happy that I switched It took me a while to make the switch to be honest with you I really like the lacquerty now If you guys remember if you watched my channel for any amount of time, you know way way back My favorite terminal emulator was termite Now I had a love affair with termite similar to my love affair with tabs and crusader Termite was my jam. It was my favorite terminal emulator. I really liked the configuration file I spent a long time making it my own and it was really really good Then it got abandoned right and that was my cue to switch to lacquerty And I was very resistant to that change like very very resistant. I didn't want to Use a lacquerty. I thought that it was inferior in every way It took me a long time to come around to the fact that a lacquerty was really pretty good Right, I really enjoyed the automatic refresh of the configuration file that a lacquerty had You know, you make a change in the configuration file and a lacquerty automatically Would take on those changes after you saved the file. That was really cool That's the one feature of kitty that I truly miss. I really wish that kitty would do that I have done some googling and found that there is a key binding that you can use to refresh the configuration I don't know if it works. I haven't actually tried it yet. I just found it like five minutes ago So that's something that I'll be looking into but it doesn't seem to be as automatic as the lacquerty version of that was And that's a little bit of a shame But outside of that comparing them the two of the terminal emulators They seem fairly comparable for me personally you guys got to remember. I'm not a programmer So any programming features that they had that differ between the two of them. I can't speak on I know from people that I've talked to that kitty supports ligatures and that a lacquerty does not I'm not sure what that means. So Well, I know I vaguely I'm vaguely aware of what it means, but I couldn't explain it to anybody So if that makes sense to you, just know that fact Anyways, that's it for this video. If you have comments on kitty, you can leave those in the comment section below I'd love to hear from you. You can follow me on masses on our odyssey those links will be in the video description You can support me on patreon at patreon.com slash the linux cast Thanks to everybody who does support me on patreon youtube you guys are all Absolutely amazing without you the chance of not being anywhere near where it is right now So thank you so very very much for your support. I truly do appreciate it like seriously guys Thank you for your support if you're still watching the video And you haven't already make sure you hit that like button because it really does help the channel out I would really appreciate it if you hit that like button Packed out of the rhythm as mental walla would say leave a comment Make sure you hit the subscribe button all that stuff that regular youtubers Tell you to do I'd really appreciate it. Thanks everybody for watching. I'll see you next time


Remote sensing has been found to be effective for monitoring the status and changes of mangrove areas in Iskandar, Malaysia. Two widely used classification techniques were tested, and the maximum likelihood classification, MLC, technique proved to provide better results than the support vector machine, SVM. Overall, the area of mangroves decreased by 33% from 1989 to 2014, with a rate of 241 hectares per year due to urban expansion. To prevent further loss of mangroves, gazetted protected areas should be established and tourism activities should be introduced in these areas. This article was authored by Kusturi Devi Kanaya, Afsane Shiki, Arthur P. Kragnell, and others.


President of the United States. As of the Congress, I have the high privilege and the distinct honor of presenting to you the President of the United States. Mr. Speaker, Mr. President, distinguished members of the Congress, honored guests, and fellow citizens, once again, in keeping with time-honored tradition, I have come to report to you on the State of the Union. And I'm pleased to report that America is much improved. And there's good reason to believe that improvement will continue through the days to come. You and I have had some honest and open differences in the year past, but they didn't keep us from joining hands in bipartisan cooperation to stop a long decline that had drained this nation's spirit and eroded its health. There is renewed energy and optimism throughout the land. America is back, standing tall, looking to the 80s with courage, confidence, and hope. The problems we're overcoming are not the heritage of one person, party, or even one generation. It's just the tendency of government to grow for practices and programs to become the nearest thing to eternal life we'll ever see on this earth. And there's always that well-intentioned chorus of voices saying, with a little more power and a little more money, we could do so much for the people. For a time, we forgot the American dream isn't one of making government bigger. It's keeping faith with the mighty spirit of free people under God. As we came to the decade of the 80s, we faced the worst crisis in our post-war history. In the 70s were years of rising problems and falling confidence. There was a feeling government had grown beyond the consent of the governed. Families felt helpless in the face of mounting inflation and the indignity of taxes that reduced reward for hard work, thrift, and risk-taking. All this was overlaid by an ever-growing web of rules and regulations. On the international scene, we had an uncomfortable feeling that we'd lost the respect of friend and foe. Some questioned whether we had the will to defend peace and freedom. But America is too great for small dreams. There was a hunger in the land for a spiritual revival, if you will, a crusade for renewal. The American people said, let us look to the future with confidence, both at home and abroad. Let us give freedom a chance. Americans were ready to make a new beginning. And together, we have done it. We're confronting our problems one by one. Hope is alive tonight for millions of young families and senior citizens set free from unfair tax increases and crushing inflation. Inflation has been beaten down from 12.4 to 3.2 percent. And that's a great victory for all the people. The crime rate has been cut almost in half, and we must work together to bring it down even more. Together, we passed the first across-the-board tax reduction for everyone since the Kennedy tax cuts. Last year, tax rates will be indexed, so inflation can't push people into higher brackets when they get cost of living pay raises. Government must never again use inflation to profit at the people's expense. Today, a working family earning $25,000 has $1,100 more in purchasing power than if tax and inflation rates were still at the 1980 levels. Real after-tax income increased 5 percent last year, and economic deregulation of key industries like transportation has offered more chances for choices, I should say, to consumers and new changes or chances for entrepreneurs. And protecting safety, tonight we can report and be proud of one of the best recoveries in decades. Send away the hand-ringers and the doubting Thomases. Hope is reborn for couples dreaming of owning homes for risk-takers with vision to create tomorrow's opportunities. The spirit of enterprise is sparked by the sunrise industries of high-tech and by small business people with big ideas. People like Barbara Proctor, who rose from a ghetto to build a multimillion-dollar advertising agency in Chicago, Carlos Perez, a Cuban refugee who turned $27 and a dream into a successfully importing business in Coral Gables, Florida. People like these are heroes for the 80s. They helped 4 million Americans find jobs in 1983.  Well, Congress does, too. In 1983, women filled 73 percent of all the new jobs in managerial, professional and technical fields. But we know that many of our fellow countrymen are still out of work, wondering what will come of their hopes and dreams. Can we love America and not reach out to tell them you are not forgotten? We will not rest until each of you can reach as high as your God-given talents will take you. The heart of America is strong, it's good and true. The cynics were wrong. America never was a sick society. We're seeing rededication to bedrock values of faith, family, work, neighborhood, peace and freedom, values that help bring us together as one people from the youngest child of the most senior citizen. The Congress deserves America's thanks for helping us restore pride and credibility to our military. And I hope that you're as proud as I am of the young men and women in uniform who have volunteered to man the ramparts in defense of freedom and whose dedication, valor and skill increases so much our chance of living in a world at peace. People everywhere hunger for peace and a better life. The tide of the future is a freedom tide. And our struggle for democracy cannot and will not be denied. This nation champions peace that enshrines liberty, democratic rights and dignity for every individual. America's new strength, confidence and purpose are carrying hope and opportunity far from our shores. A world economic recovery is underway. It began here. We've journeyed far, but we have much farther to go. Franklin Roosevelt told us 50 years ago this month, civilization cannot go back. Freedom must not stand still. We have undertaken new methods. It is our task to perfect, to improve, to alter when necessary, but in all cases, to go forward. It's time to move forward again. Time for America to take freedom's next step. Let us unite tonight behind four great goals to keep America free, secure and at peace in the 80s together. We can ensure steady economic growth. We can develop America's next frontier. We can strengthen our traditional values. And we can build a meaningful peace to protect our loved ones in this shining star of faith that has guided millions from tyranny to the safe harbor of freedom, progress and hope. Doing these things will open wider the gates of opportunity, provide greater security for all with no barriers of bigotry or discrimination. The key to a dynamic decade is vigorous economic growth, our first great goal. We might well begin with common sense in federal budgeting, government spending no more than government takes in. We must bring federal deficits down, but how we do that makes all the difference. We can begin by limiting the size and scope of government. Under the leadership of Vice President Bush, we have reduced the growth of federal regulations by more than 25 percent and cut well over 300 million hours of government-required paperwork each year. This will save the public more than $150 billion over the next 10 years. The Grace Commission has given us some 2,500 recommendations for reducing wasteful spending and they are being examined throughout the administration. Federal spending growth has been cut from 17.4 percent in 1980 to less than half of that today. And we have already achieved over $300 billion in budget savings for the period of 1982-86. But that's only a little more than half of what we sought. Government is still spending too large a percentage of the total economy. Some insist that any further budget savings must be obtained by reducing the portion spent on defense. This ignores the fact that national defense is solely the responsibility of the federal government. Indeed, it is its prime responsibility. And yet defense spending is less than a third of the total budget. During the years of President Kennedy and to the years before that, defense was almost half the total budget. And then came several years in which our military capability was allowed to deteriorate to a very dangerous degree. We are just now restoring through the essential modernization of our conventional and strategic forces, our capability to meet our present and future security needs. We dare not shirk our responsibility to keep America free, secure, and at peace. The last decade saw domestic spending surged literally out of control. But the basis for such spending had been laid in previous years. A pattern of overspending has been in place for half a century. As the national debt grew, we were told not to worry that we owed it to ourselves. Now we know that deficits are a cause for worry. But there is a difference of opinion as to whether taxes should be increased, spending cut, or some of both. Here is expressed that government borrowing to fund the deficit could inhibit the economic recovery by taking capital needed for business and industrial expansion. Well, I think that debate is missing an important point. Whether government borrows or increases taxes, it will be taking the same amount of money from the private sector, and either way, that's too much. Simple fairness dictates that government must not raise taxes on families struggling to pay their bills. The root of the problem is that government share is more than we can afford if we're to have a sound economy. We must bring down the deficits to ensure continued economic growth. In the budget that I will submit on February 1st, I will recommend measures that will reduce the deficit over the next five years. Many of these will be unfinished business from last year's budget. Some could be enacted quickly if we could join in a serious effort to address this problem. I spoke today with Speaker of the House, O'Neill, Senate Majority Leader Baker, Senator Minority Leader Byrd, and House Minority Leader Michael. I asked them if they would designate congressional representatives to meet with representatives of the administration to try to reach prompt agreement on a bipartisan deficit reduction plan. I know it would take a long, hard struggle to agree on a full-scale plan, so what I have proposed is that we first see if we can agree on a down payment. I believe there is basis for such an agreement, one that could reduce the deficits by about $100 billion over the next three years. We could focus on some of the less contentious spending cuts that are still pending before the Congress. These could be combined with measures to close certain tax loopholes, measures that the Treasury Department has previously said to be worthy of support. In addition, we could examine the possibility of achieving further outlay savings based on the work of the Grace Commission. If the congressional leadership is willing, my representatives will be prepared to meet with theirs at the earliest possible time. I would hope the leadership might agree on an expedited timetable in which to develop and enact that down payment. A down payment alone is not enough to break us out of the deficit problem. It could help us start on the right path, yet we must do more. So I propose that we begin exploring how together we can make structural reforms to curb the built-in growth of spending. I also propose improvements in the budgeting process. From 43 of our 50 states grant their governors the right to veto individual items in appropriation bills without having to veto the entire bill. California is one of those 43 states. As governor, I found this line item veto was a powerful tool against wasteful or extravagant spending. It works in 43 states. Let's put it to work in Washington for all of us. It would be most effective if done by constitutional amendment. The majority of Americans approve of such an amendment, just as they and I approve an amendment mandating a balanced federal budget. Many states also have this protection in their constitutions. To talk of meeting the present situation by increasing taxes is a band-aid solution which does nothing to cure an illness that's been coming on for half a century. To say nothing of the fact that it poses a real threat to economic recovery. Let's remember that a substantial amount of income tax is presently owed and not paid by people in the underground economy. It would be immoral to make those who are paying taxes pay more to compensate for those who aren't paying their share. There's a better way. Let us go forward with an historic reform for fairness, simplicity, and incentives for growth. I am asking Secretary Don Reagan for a plan for action to simplify the entire tax code so all taxpayers big and small are treated more fairly, and I believe such a plan could result in that underground economy being brought into the sunlight of honest tax compliance and it could make the tax base broader so personal tax rates could come down not go up. I've asked that specific recommendations consistent with those objectives be presented to me by December 1984. Our second great goal is to build on America's pioneer spirit. I said something funny. I said America's next frontier and that's to develop that frontier, a sparkling economy, spurs initiatives, sunrise industries, and makes older ones more competitive. Nowhere is this more important than our next frontier, space. Nowhere do we so effectively demonstrate our technological leadership and ability to make life better on earth. The space age is barely a quarter of a century old, but already we've pushed civilization forward with our advances in science and technology. Opportunities and jobs will multiply as we cross new thresholds of knowledge and reach deeper into the unknown. Our progress in space, taking giant steps for all mankind, is a tribute to American teamwork and excellence. Our finest minds in government, industry, and academia have all pulled together and we can be proud to say we are first, we are the best, and we are so because we're free. America has always been greatest when we dared to be great. We can reach for greatness again. We can follow our dreams to distant stars living and working in space for peaceful economic and scientific gain. Tonight, I am directing NASA to develop a permanently manned space station and to do it within a decade. A space station will permit quantum leaps in our research in science, communications, in metals, and in life-saving medicines which can be manufactured only in space. We want our friends to help us meet these challenges and share in their benefits. NASA will invite other countries to participate so we can strengthen peace, build prosperity, and expand freedom for all who share our goals. Just as the oceans opened up a new world for clipper ships and Yankee traders, space holds enormous potential for commerce today. The market for space transportation could surpass our capacity to develop it. Companies interested in putting payloads into space must have ready access to private sector launch services. The Department of Transportation will help an expendable launch services industry to get off the ground. We'll soon implement a number of executive initiatives, develop proposals to ease regulatory constraints, and with NASA's help, promote private sector investment in space. And as we develop the frontier of space, let us remember our responsibility to preserve our older resources here on Earth. Education of our environment is not a liberal or conservative challenge. It's common sense. Though this is a time of budget constraints, I have requested for EPA one of the largest percentage budget increases of any agency. We will begin the long necessary effort to clean up a productive recreational area and a special national resource, the Chesapeake Bay. To reduce the threat posed by abandoned hazardous waste dumps, EPA will spend $100 or $410 million, and I will request a supplemental increase of $50 million. And because the Superfund law expires in 1985, I've asked Bill Ruckelshaus to develop a proposal for its extension, so there will be additional time to complete this important task. On the question of acid rain, which concerns people in many areas of the United States and Canada, I'm proposing a research program that doubles our current funding, and we'll take additional action to restore our lakes and develop new technology to reduce pollution that causes acid rain. We have greatly improved the conditions of our natural resources. We'll ask the Congress for $157 million, beginning in 1985, to acquire new park and conservation lands. The Department of the Interior will encourage careful, selective exploration and production on our vital resources in an exclusive economic zone within the 200-mile limit off our coasts, but with strict adherence to environmental laws and with fuller state and public participation. But our most precious resources, our greatest hope for the future, are the minds and hearts of our people, especially our children. We can help them build tomorrow by strengthening our community of shared values. This must be our third great goal. For us, faith, work, family, neighborhood, freedom, and peace are not just words. They're expressions of what America means, definitions of what makes us a good and loving people. Families stand at the center of our society, and every family has a personal stake in promoting excellence in education. Excellence does not begin in Washington. A 600% increase in federal spending on education between 1960 and 1980 was accompanied by a steady decline in scholastic aptitude test scores. Excellence must begin in our homes and neighborhood schools, where it's the responsibility of every parent and teacher and the right of every child. Our children come first, and that's why I established a bipartisan National Commission on Excellence in Education to help us chart a common-sense course for better education. And already, communities are implementing the commission's recommendations. Schools are reporting progress in math and reading skills. But we must do more to restore discipline to schools, and we must encourage the teaching of new basics, reward teachers of merit, enforce tougher standards, and put our parents back in charge. I will continue to press for tuition tax credits to expand opportunities for families and to soften the double payment for those paying public school taxes and private school tuition. Our proposal would target assistance to low- and middle-income families. Just as more incentives are needed within our schools, greater competition is needed among our schools. Without standards and competition, there can be no champions, no records broken, no excellence in education or any other walk of life. And while I'm on this subject, each day your members observe a 200-year-old tradition meant to signify America is one nation under God. I must ask, if you can begin your day with a member of the clergy standing right here, leading you in prayer, then why can't freedom to acknowledge God be enjoyed again by children in every schoolroom? America was founded by people who believe that God was their rock of safety. He is ours. I recognize we must be cautious in claiming that God is on our side, but I think it's all right to keep asking if we're on his side. During our first three years, we have joined bipartisan efforts to restore protection of the law to unborn children. Now, I know this issue is very controversial. But unless and until it can be proven that an unborn child is not a living human being, can we justify assuming without proof that it isn't? No one has yet offered such proof. Indeed, all the evidence is to the contrary. We should rise above bitterness and reproach, and if Americans could come together in a spirit of understanding and helping, then we could find positive solutions to the tragedy of abortion. Economic recovery, better education, dedicated rededication to values all show the spirit of renewal gaining the upper hand. And all will improve family life in the 80s. But families need more. They need assurance that they and their loved ones can walk the streets of America without being afraid. Parents need to know their children will not be victims of child pornography and abduction.  Already, our efforts to crack down on career criminals, organized crime, drug pushers, and to enforce tougher sentences and paroles are having effect. In 1982, the crime rate dropped by 4.3%, the biggest decline since 1972. Protecting victims is just as important as safeguarding the rights of defendants. Opportunities for all Americans. Opportunities for all Americans will increase if we move forward in fair housing and work to ensure women's rights, provide for equitable treatment in pension benefits and individual retirement accounts, facilitate child care, and enforce delinquent parents' support payments. It's not just the home but the workplace and community that sustain our values and shape our future. So I ask your help in assisting more communities to break the bondage of dependency. Help us to free enterprise by permitting debate and voting yes on our proposal for enterprise zones in America. This has been before you for two years. Its passage can help high unemployment areas by creating jobs and restoring neighborhoods. A society bursting with opportunities, reaching for its future with confidence, sustained by faith, fair play, and a conviction that good and courageous people will flourish when they're free, these are the secrets of a strong and prosperous America at peace with itself and the world. A lasting and meaningful peace is our fourth great goal. It is our highest aspiration. And our record is clear. Americans resort to force only when we must. We have never been aggressors. We have always struggled to defend freedom and democracy. We have no territorial ambitions. We occupy no countries. We build no walls to lock people in. Americans build the future. And our vision of a better life for farmers, merchants, and working people from the Americas to Asia begins with a simple premise. The future is best decided by ballots, not bullets. Governments which rest upon the consent of the government do not wage war on their neighbors. Only when people are given a personal stake in deciding their own destiny, benefiting from their own risks do they create societies that are prosperous, progressive, and free. Tonight, it is democracies that offer hope by feeding the hungry, prolonging life, and eliminating drudgery. When it comes to keeping America strong, free, and at peace, there should be no Republicans or Democrats, just patriotic Americans. We can decide the tough issues not by who is right, but by what is right. Together, we can continue to advance our agenda for peace. We can establish a more stable basis for peaceful relations with the Soviet Union. Strengthen allied relations across the board. Achieve real and equitable reductions in the levels of nuclear arms. Reinforce our peacemaking efforts in the Middle East, Central America, and Southern Africa. Insist or assist developing countries, particularly our neighbors in the Western Hemisphere, and assist in the development of democratic institutions throughout the world. The wisdom of our bipartisan cooperation was seen in the work of the Scowcroft Commission, which strengthened our ability to deter war and protect peace. In that same spirit, I urge you to move forward with the Henry Jackson Plan to implement the recommendations of the Bipartisan Commission on Central America. Your joint resolution on the multinational peacekeeping force in Lebanon is also serving the cause of peace. We are making progress in Lebanon. For nearly 10 years, the Lebanese have lived from tragedy to tragedy, with no hope for their future. Now, the multinational peacekeeping force and our Marines are helping them break their cycle of despair. There is hope for a free, independent and sovereign Lebanon. We must have the courage to give peace a chance. And we must not be driven from our objectives for peace in Lebanon by state-sponsored terrorism. We have seen this ugly specter in Beirut, Kuwait, and Rangoon. It demands international attention. I will forward shortly legislative proposals to help combat terrorism, and I will be seeking support from our allies for concerted action. Our NATO alliance is strong. 1983 was a banner year for political courage, and we have strengthened our partnerships and our friendships in the Far East. We are committed to dialogue, deterrence, and promoting prosperity. We will work with our trading partners for a new round of negotiations in support of freer world trade, greater competition, and more open markets. A rebirth of bipartisan cooperation, of economic growth and military deterrence, and a growing spirit of unity among our people at home and our allies abroad underline a fundamental and far-reaching change, the United States is safer, stronger, and more secure in 1984 than before. We can now move with confidence to seize the opportunities for peace, and we will. Tonight, I want to speak to the people of the Soviet Union to tell them it's true that our governments have had serious differences, but our sons and daughters have never fought each other in war. And if we Americans have our way, they never will. People of the Soviet Union, there is only one sane policy for your country and mine to preserve our civilization in this modern age. A nuclear war cannot be won and must never be fought. The only value in our two nations possessing nuclear weapons is to make sure they will never be used. But then, would it not be better to do away with them entirely? People of the Soviet President Dwight Eisenhower, who fought by your side in World War II, said the essential struggle is not merely man against man or nation against nation. It is man against war. Americans are people of peace. If your government wants peace, there will be peace. We can come together in faith and friendship to build a safer and far better world for our children and our children's children. And the whole world will rejoice. That is my message to you. Some days, some days when life seems hard and we reach out for values to sustain us or a friend to help us, we find a person who reminds us what it means to be Americans. Sergeant Stephen Trujillo, a medic in the Second Ranger Battalion's 75th Infantry, was in the first helicopter to land at the compound held by Cuban forces in Grenada. He saw three other helicopters crash. Despite the imminent explosion of the burning aircraft, he never hesitated. He ran across 25 yards of open terrain through enemy fire to rescue wounded soldiers. He directed two other medics, administered first aid, and returned again and again to the crash site to carry his wounded friends to safety.  You inspire us as a force for freedom, not for despotism and yes for peace, not conquest. God bless you. And then there are unsung heroes, single parents, couples, church and civic volunteers. Their hearts carry without complaint the pains of family and community problems. They soothe our sorrow, heal our wounds, calm our fears and share our joy. A person like Father Ritter is always there. His Covenant House programs in New York and Houston provide shelter and help to thousands of frightened and abused children each year. The same is true of Dr. Charles Carson. Paralysed in a plane crash, he still believed nothing is impossible. Today in Minnesota, he works 80 hours a week without pay, helping pioneer the field of computer-controlled walking. He has given hope to 500,000 paralyzed Americans that someday they may walk again. Can we, how can we not believe in the greatness of America? How can we not do what is right and needed to preserve this last best hope of man on earth? After all our struggles to restore America, to revive confidence in our country, hope for our future. After all our hard-won victories earned through the patience and courage of every citizen, we cannot, must not and will not turn back. We will finish our job. How could we do less? We're Americans. Carl Sandberg said, I see America not in the setting sun of a black night of despair. I see America in the crimson light of a rising sun, fresh from the burning creative hand of God. I see great days ahead for men and women of will and vision. I've never felt more strongly that America's best days and democracy's best days lie ahead. We're a powerful force for good. With faith and courage, we can perform great deeds and take freedom's next step, and we will. We will carry on the tradition of a good and worthy people who have brought light where there was darkness, warmth where there was cold, medicine where there was disease, food where there was hunger, and peace where there was only bloodshed. Let us be sure that those who come after will say of us in our time that in our time we did everything that could be done. We finished the race. We kept them free. We kept the faith. Thank you very much.


Good afternoon, everyone. My name is Ana Vallejo. I'm the communications manager of Myeloma Patients Europe. Welcome to this webinar, including the AGM 2020 webinar series. As you know, our annual general meeting was cancelled due to the COVID outbreak, and we are delivering our educational program in a virtual way by giving all sessions as webinars. Today's webinar is special because it's the first one not only focused on the patient, but also on the relatives and cares and the challenges that they have to face around the disease. This webinar will be given by Ellen Waters, a Myeloma Information Nurse, especially at Myeloma UK, the MP member in the UK. And for your information, this webinar will be recorded and will be uploaded to the Myeloma Patients Europe website, which is www.npeurope.org, and it will be also available in the MP YouTube channel. The webinar today is scheduled from 6 to 7, so the presentation will last about 40 and 45 minutes, and then I will open the session for questions. In case you have any question, there are two ways to ask questions to our speaker today. One of them is using the microphone in your computer, as I'm doing right now, so just press the right hand button that you will see on your screen, and I will unmute you so you can ask directly your question to our speaker. If you don't want to use the microphone, another option is asking your question in writing. You will see a chat window in your screen, so you can write your question there, and I will receive those questions, and I will ask those questions to our speaker today on your behalf. On behalf of Myeloma Patients Europe, Ellen, I would like to thank you for your help and for being here today to give this webinar. Thank you very much. Thank you, Anna. Thank you. And of course, I'd much rather be with you all in Amsterdam, but these are unprecedented times. I'd like to thank you for inviting me to talk today about the impact of Myeloma and AL amyloidosis for those who are carers. I hope everyone is safe and everyone is well. Whilst my experiences and the work of Myeloma UK is UK focused, the challenges faced by carers, of course, is universal. So I'm sorry if this topic loops as if it's a little bit UK focused, but we're all in this together. So first of all, I'm just going to move on to my next slide. So first of all, I'd like to give a brief overview of the work we do at Myeloma UK, just in case some of you're not familiar with the charity. We are the only organisation in the UK which focuses on Myeloma and its related conditions, such as AL amyloidosis, of course. We work closely with pharma companies, with government bodies to ensure best practice and to improve standards of treatment and care. We provide a range of resources and a variety of formats to inform those accessing our services. And we do not receive any government funding, so we rely entirely on the generosity of our fundraisers. So as mentioned before, our patient advocacy team works with patients, doctors, the pharma industry, alongside our information and support services to make sure that Myeloma patients do receive the best possible treatment and care. And of course, we support trials which are innovative and patient-centred. So we have three main strategic goals for each of the key areas within the healthcare advocacy services directorate, which were included in the slide above. So these are to inform, educate and support, to facilitate timely diagnosis and high standards of delivering care, and to improve equity, inclusiveness, engagement and reach. To help us achieve these goals, we also work closely with thousands of healthcare professionals. Our online services and educational resources for doctors and nurses aim to support the work that we do by keeping them up to date with the latest in research discovery and in treatments for Myeloma. Our services include developing resources for healthcare professionals, and these include the nurse learning program, which has, and we also have short courses for hematologists, tutorials, seminars, key publications, clinical guides, best nursing best practice guides, medical animations and latest news and events. So healthcare professionals know they can just go on to their section of our website and be fully informed and up to date with the latest. Our clinical services excellence program, which you may have heard about, was established in 2015 to recognize where superior care is given to Myeloma patients, to share best practice in the practice initiatives, and to benchmark optimum standards in Myeloma treatment. Today, about 20 UK hospitals have received this accreditation, and there are many more in progress. Any UK hospital treating patients is eligible to apply for CSIP, and participation in the program includes completion of patient experience surveys. So we involve patients, we involve family members, and they all have their say in making sure that that the hospital that they attend, the healthcare professionals that they speak to are delivering the best practice. So we ask for things like new patient experiences, whether or not the hospital takes part in clinical trials, how they are with multidisciplinary team working, even down to their their programs and processes for end of life care. And of course we have an early diagnosis steering group. It's a panel of experts dedicated to identifying the major issues and making sure that patients are diagnosed as early as possible. It's imperative that patients are diagnosed early. The complications caused by Myeloma and by AL amyloidosis can be devastating, and early diagnosis is absolutely imperative. We are expanding that early diagnosis, of course, to include those with AL amyloidosis. So I work within the patient and carer services department. My main job is to answer our free phone helpline, the Myeloma infoline, which I've been doing today. I've been speaking to many patients and families today on the helpline. And this also incorporates our Ask the Nurse email service. So I'll talk a little bit about these services, about my role, and then I'll turn my focus specifically to the concerns that the carer space and the topic of the talk today. I will get round to it, I promise. As well as our Myeloma infoline, other resources for patients and carers include our info days. We have about 10, 12 info days every year, and we always make sure that we include a session specifically for carers. We have support groups, we have online resources, as well as a range of award-winning publications available to download or as hard copies. So I'll give you a brief overview of my role at Myeloma UK. I am a registered nurse, and I have been for many years, and I maintain my nurse registration with the NMC, that's the nurse and midwifery council. Whilst I was a nurse on the wards, I did gain a diploma in cancer and palliative care whilst I was working for the NHS. But I've been at Myeloma UK now for 17 years, more than 17 years, so all I've done in 17 years is Myeloma and AL amyloidosis. And as I said, my main job is to answer the helpline there and the email service. As it's my main area of expertise, of course I'll focus on infoline and the email service, and I've got statistics to share with you. I've got examples, I've got feedback that highlights carers' concerns specifically. Then I'll talk a little bit about the nature of how and why carers are affected. I hope you'll find it of interest, and of course I'm happy to answer any questions you may have at the end, or please feel free to interrupt me. So the Myeloma infoline is free to call, available weekdays, Monday to Friday, nine till five. We did do a pilot last year where we extended the service for a few months to a Saturday morning, and that pilot is being evaluated at the moment. So we may well extend our hours, watch this space as they say. We aim to answer at least 80% of calls first time by a Myeloma information specialist. Now I'm a Myeloma information specialist, and I work alongside Sarah and Kim, and we're the three people that people will speak to when they first call our service. They'll either get me, or they'll get Sarah, or they'll get Kim, and we are obviously very knowledgeable about Myeloma and its related conditions, and hopefully we can answer any questions that people have and put their mind at ease that they're not alone. So we are committed to providing the best quality service to anyone who calls the infoline and uses our email service, and this has been accredited by the Helplines partnership since 2004 with a quality standard, and you'll see the logo there on the slide, the Helplines standard, which is quite prestigious award, and we've received it since 2004. We collect a lot of statistics around calls and emails, and last year's annual review of the infoline and the ask in our service showed that of 3947 contacts, almost 35% describe themselves as carers, family members, or friends. So our services are unique and tailored to those people who come to us. To look specifically at the calls to the Myeloma infoline, we can see from the 2019 end of year report that the majority of service users are patient and female, and most callers wanted to talk about Myeloma. This is no surprise as in the UK there are more than five and a half thousand cases of Myeloma diagnosed every year, as opposed to between five and six hundred diagnosis of AL amyloidosis. We have to bear in mind of course that the Myeloma infoline can be anonymous and it is caller led, so we don't always know who's at the other end of the line. Now looking at the same with regard to the emails we received for 2019, it's a similar picture but with a higher percentage of those who said identifying as carers. We have collected information from questionnaires about callers experiences. This is a tool that's currently being reviewed. However from this snapshot of experiences we can see that prior to making a call service users were overwhelmingly looking forward to finding out more but did admit to feelings of anxiety. Many weren't sure what to expect but were hopeful. I'm looking at how they felt after the call which is very important. Our snapshot confirms that callers felt more informed, more confident, less anxious and less isolated and that's what makes it all worthwhile. So the feedback that we receive is consistently positive. I've added here a selection of recent quotes from carers which were received from a variety of sources which shows the impact the team has on service users. I'll just read them out for you. Without Myeloma UK I wouldn't have coped when my husband was first diagnosed. Thank you so much to the infoline team. You have been really professional, really helpful and supportive and answered all of my questions about how I can support my friend. Honestly, this is so so helpful. I feel like the whole family is just feeling a bit lost and we didn't know what to expect. I called the Myeloma helpline because I thought he had been handed a death sentence and I didn't want to show him how frightened I was. They were remarkable and really helped me understand that this was something that could be lived with. Lovely, it's really nice to receive that sort of feedback and it just makes you want to do more. So now I'll explore how a diagnosis of Myeloma or AL amyloidosis can have a hugely emotional and psychological effect on those caring for them and give some examples of actual experiences to give you some insight. I'd like to introduce a case study from a challenging call which we took on the Myeloma infoline. The infoline team, the MIS, the Myeloma information specialist that I talked about earlier, we meet regularly to discuss, reflect on and learn from challenging calls and emails. Have a look over this case study and at the challenges which are presented here and have a think how you might have dealt with a similar call. I'll go over it. So the caller was a carer, of course. Unfortunately, her husband had died six months previously. The patient had had several lines of treatment and had issues with relapses and side effects. The caller was frustrated that the doctors didn't continue the treatment. She said she wasn't ready. She thought she had more time. It was a very emotional call. She blames herself and she can't seem to move forward with her grief. So the call was an emotive one and whilst it's important for the Myeloma information specialists to empathise, to acknowledge and to show compassion, we can't let such calls affect us to the extent that we are ineffective. A phone call is tricky. It doesn't give you some of the clear signals which you would normally rely on, like facial expressions, like body language, and it can be hard sometimes to gauge the caller's emotional state of mind. There are often silences on this type of call. Silences aren't necessarily a bad thing and they can mean that the caller is thinking about what has been said, thinking about how best to form their questions and reflecting on the situation that they're experiencing. We wouldn't be immediately jumping in to fill such silences, but we would be letting the caller know that it was okay to be silent, using such terms as I'm still here, take your time. Of course we can't see the patient's notes and we haven't been looking after the patient personally. So there are big gaps in our knowledge about the individual situation. We would use open questions to help us gain more insight and help us better answer the concerns, clarify issues and support and inform the caller. So the myeloma information specialist approach on this call, this is where she summarised her approach. So all calls are answered in a compassionate, empathetic manner. We acknowledge the situation we offer explanations about the complex nature of myeloma in order to give clarity and to answer the caller's queries. We remain objective throughout and signpost to other resources where appropriate. For this type of call we would be signposting perhaps to bereavement services like crews. We may even signpost back to the patient's team, their best place to answer questions about a patient's individual circumstances. Sometimes this is all that is needed and listening here and being able to voice and share anxiety often helps. We have many calls of this nature and I have to say that mostly by the time the caller hands up they feel more in control and with a bit of a plan to move forward and they always know that they can call us back again should anything be playing on their mind. I hope that was interesting and I've got another case study to reflect upon in a wee while but back to the impact myeloma and amyloidosis has on everyone affected, focusing on the carers. So a diagnosis of myeloma brings about many changes. It changes everything. We're often discussing with patients and with their loved ones how their lives are different following a diagnosis to what they were before and there does need to be a period of adjustment. There's almost an immediate psychological impact for all involved and of course that experience for the patient is hugely influenced by who they have around them supporting them. The diagnosis not only has an effect on the patient but the well-being of those close to them is also impacted. It's so important to recognise and acknowledge this and have resources in place to support everyone affected. Throughout this talk I will be referring regularly to a piece of research carried out by myeloma UK called a life in limbo which provides key insights into issues experienced by carers. Here we have two quotes taken directly from that publication which mirror many of the conversations we experience via the infoline and the ask the nurse service. I'll just read those two quotes out to you. So sometimes it's like you're invisible. Of course it's all about the patient but at the same time to have a little bit of support would be nice. You're trying to support them and your heart is breaking too. Living with myeloma and ALM elidosis is therefore often extremely challenging physically and emotionally for patients, carers and family members. The study a life in limbo was conducted between May and June 2016 and it was designed with the input of carers and involved a survey of 374 carers and second stage interviews to explore issues in more depth. So this slide explores the changing roles that carers find themselves having to deal with. Often the first time someone hears the word myeloma or ALM elidosis is when the oral loved one has been diagnosed. Carers find themselves in a situation of great change. They must learn about a disease they have likely never heard of. They must become familiar with its potential complications with treatments inside effects and they find themselves thrown into a world of hospital appointments dealing with healthcare professionals and witnessing someone they love in pain both emotionally and physically. The burden can be initially overwhelming and can cause huge turmoil affecting relationships and day-to-day life. Often our search users voice anxiety around the support they provide to their loved one. Are they getting it right? Is there anything else they need to know to do and how can we help them with this? So looking at the carers role. So we know that carers are often completely unprepared for the new role in which they find themselves but it becomes clear very quickly that the diagnosis of a loved one will impact greatly on their everyday life. They may find that work suffers as a result or they may look at changing their priorities around the patient and their work life. It may be that they find themselves to be the main earner in the family. Social activities can be impacted, friends lost, hobbies put to one side and daily tasks can be neglected. Often carers own health issues are ignored, played down or overlooked. So all of this of course can be a huge cause of stress and stress is a major factor when looking after someone with myeloma or a lamyloidosis. Challenges which weren't expected which were unforeseen become a dominating part of day-to-day life and of course we know that stress can cause physical symptoms and if a carer becomes unwell then who will look after the patient? The changing roles, the burden of responsibility can often have a negative effect on all areas of life such as described on this slide. So here are some further statistics taken from our report A Life in Limbo around the concerns reported by carers. You can read this document on our website. It is from 2016 but we do have plans to explore further research in this area so carers needs are something we do take very seriously and as an organisation we will always factor them into our work. I'll just read out these stats here. So from that report we heard that almost three quarters of those who provided care and support to a relative or friend did not see themselves as a carer. The term carer is a bit of a strange one. Often we'll hear people saying well I'm not a carer, I'm a wife, I'm a husband, I'm a son, I'm a daughter but you know we would call them all carers. Four out of five carers always put the needs of their relatives or friends before their own. We hear that very commonly. Over half of the carers often felt that they didn't have anybody to talk to. Such a shame. 94% of carers are emotionally impacted and found the uncertainty to be a major factor and a quarter of those set in work said that they'd been unable to work or had to retire early to care for the person. So I'd like to explore another case study if that's all right. I do think that sharing experiences and you know these are absolutely invaluable. These are actual studies from actual calls or actual emails so I do hope you find them interesting. So this was an email which came into our Ask the Nurse service initially and it was immediately followed up by a call to the myeloma infoline. You'll see this query is quite different from the previous one we talked about and it gives you an idea of the range of calls and issues we deal with and the complexity of those. So again have a wee look and try and think how you would address the very complex issues faced here. So the email came from a carer. Her husband, young husband to be diagnosed with myeloma in his 40s. We know that myeloma is generally diagnosed in those who are older. He was put forward for a clinical trial, the myeloma, the muk9 high-risk clinical trial and there was a bit of confusion about the bone marrow biopsy results and the cytogenetic risks, the status of that. So the email was sent and the next slide shows you the email and our reply but within seconds of the email being sent she called the infoline and actually it was much easier to talk to her on the infoline and it did clear up a few issues that we had being unable to see the patient or the notes. So this was the email that was sent immediately prior to the call and you can see it's very complex and this is why it's really, really important that the myeloma information specialist answering the helpline, answering emails are really up to date with the world of myeloma, its latest treatment and care. So we've ensured that that happens. So the lady was confused because one bone marrow biopsy result showed that her husband had high risk cytogenetic abnormalities and therefore fitted the criteria for the trial and another doctor said that no, he wasn't high risk and therefore would be on standard treatment and not eligible for the clinical trial. So she was very confused. This is my reply, I've just copied you in the whole reply taken out in people's details so that to maintain GDPR. So whenever we send an email from our Aston North Service we make sure that they're reviewed by at least one other myeloma information specialist and for this email I worked closely with our patient advocacy team. I also worked closely with our senior scientific and knowledge communication officer to form a response. I don't really think I could have replied to this email without that help. So I've offered some some reasons why there was a different report but obviously I can't say for sure as I don't have access to the clinical notes and I'm not looking after the patient so you can see that was quite a complex email. So the challenges of this were that clearly the service user was very well informed, very knowledgeable, had done a lot of treatment and was also extremely anxious. She did say that she was prepared to buy any treatment. She had kind of fixated on the fact that the trial included a maintenance arm of Lenora Ledemide and she had read that that was the way to go for myeloma patients. So she kind of fixated on that. In the UK maintenance treatment isn't something that's routinely available as yet so she said she was prepared to buy it. So it was all about managing expectations and trying to alleviate that anxiety and clarifying things and when she called I was able to determine that indeed the bone marrow biopsy had gone to two different labs and the one that was being read for the clinical trial was a bit more thorough and discovered actually that the patient had another abnormality that meant he was ruled out of the clinical trial. So what I had to do in order to be able to answer this email was look at the protocol for the clinical trial, liaised with my colleagues in patient advocacy and my scientific knowledge and communications officer and then when the when the carer called it all became a bit clearer and it was actually much easier. That was quite a complex one. So to round up being a carer for for someone with a rare cancer or condition does present many challenges. Carers do need to make adjustments and look after their own psychological, emotional and physical health but it can bring about some positives too. This is my favorite quote from our report, A Life in Limbo and it's very very true. I feel angry that I'm not going to get the future I wanted but the hardest thing to feel is how my life at the moment is in limbo. I hope that was of interest and I'll do my best to answer any questions that you have. So please go ahead. Well thank you very much very much Ellen for this presentation and now I will open the floor for questions. Just quickly remind you that there are two ways to ask questions. One of them is using the microphone in your computer and ask directly to our speaker and make sure that you click on the right hand button so I can unmute you before asking your question and the other way is as we mentioned before sending your question in the chat window and I will read them for you to our speaker today. We've had some questions arriving during your presentation. The first one is I've read that patients and carers have the same feelings and the same emotions around the disease but only with different intensity in different stages of the disease but both patient and carers feel the same anxiety for your helplessness. Do you agree? Absolutely that's all very true and it is a life-changing event it's almost a bit like you know when you're diagnosed with something that you've never heard of before it's a bit like post-traumatic stress and you go through a whole range of emotions but we often we know that often the carers sometimes have a bit of a harder job because they take it upon themselves to become fully informed about the disease, they take it upon themselves to know when the next appointment is, they take it upon themselves to know what the blood results are so they're fielding questions from relatives, supporting their loved one and trying their best to behave as normal so yes it is very complex and this is why it is so important that the carers' needs, carers' psychological, physical and emotional health is absolutely a priority but yes they all feel that sense of you know foreboding really if you like. Well thank you very much the next question is related a bit with that one it says in my own experience as a carer I think it's difficult to realize that you need help too you always think about the patient and what he or she might need and you feel that you don't have the right to complain because you are healthy and your role is basically to support the patient in your opinion when or what symptoms can make us realize that we need help to cope emotionally with this situation. Yes no absolutely as mentioned earlier that is absolutely the case and it is something that you need to be aware of carers needs I think we are getting better at it I think healthcare professionals are getting better at it I did speak to a lady on the helpline once who attended with her husband for appointments and felt completely ignored and the healthcare professionals the doctors the nurse specialists directed all of their questions at the patient and she wasn't asked anything at all but I have to say that nobody knows the patient better than the person that's caring for them if it's a wife or a husband they see them day in day out and they can notice subtle changes but with regards to your your own psychological well-being as a carer I think it's it's perfectly normal and perfectly natural to feel down to feel low in mood at times however if that is something that's prolonged if you don't feel that that that it's getting better when you're becoming informed or if you don't feel that weeks down the line that your mood is improving then that may be time to to worry that perhaps depression is taking hold and we know that in order to to improve that and to allow you to take more control is the best thing you can do absolutely is to become fully informed to become knowledgeable and to know what questions to ask of the healthcare professionals often a call to the infoline or an email to the ask the nurse services a platform for for questions at the appointment and it and it better prepares you for that you know what to ask and that information is power but if you do feel that you're not coming out of that low mood I think that's the time then to think perhaps I do need a little bit more help perhaps I need to speak to a counsellor a psychologist but for me and it can be done as a team as a family thank you very much the next question is the infoline free of cost from everywhere in the world or only the UK only the UK as far as I know yes the UK and Ireland it's free to call but of course and that's why we have our email service and that's why we have our very very thorough website so if you want to speak to myself or Sarah or Kim or if you have any questions bearing in mind that we can really only speak from a UK perspective we're not familiar with healthcare systems another part of the world but if you wanted to ask a general question we do take calls international calls we do answer emails from international from people who are in other countries but bearing in mind that we can really only talk in a general sense we don't have access to notes we don't know the the as I say the specifics of the the healthcare system in other countries really thank you very much the next question cares can have problems at work because they need days days off to go to the doctor's appointment with the patient or to receive treatment to do that you need to ask for days off holiday and wait for the approval of your boss and sometimes this can be difficult how can we cope with these problems our work with co-workers as well or being overwhelmed because you spend half of your holiday in the hospital yeah that's a good one and it's one that we do get asked quite regularly as well so I think I think the key is to be open and honest from the start as we know you know not many people have heard of myloma or al amyloidosis and the chances are your your employer your occupational health department your HR HR department haven't heard of it either so I think to be open and honest from from the outset is really important and to most employers I have to say are very good and will will take things very seriously but I know here in the UK there is there is various bits of legislation that that people can turn to I'm not quite sure what's available in other parts of the world but I do think that that you know having that open and honest conversation with your employer with occupational health with HR is important from the very get go thank you very much next question sometimes that scares we have to look for clinical trials new data or new treatment and sometimes that information that we find is not very good and how can we talk with the patient regarding the lack of option of treatments or bad results in new treatments I guess it's also this question is referring to well if the care is the person who can take care of the treatment because of the age of the of the patient probably okay so and one thing I always say on the helpline is you know we when when someone first hears the word myeloma or alamelosis they are overwhelmed they've never heard of it before and then to be told that it's an incurable cancer and you're going to be bombarded with lots of toxic treatments which will have loads of side effects that that can can all be very um overwhelming but then I always try and put a wee edge of positivity on that and I say that the research for myeloma is you know it's a very busy pipeline there are always new things coming along there's always research available how you access those new treatments in that research is I'm not sure how you would go about it in other parts of the world in the UK of course we have our clinical trial tracker so patients can look at our trial tracker on our website have a look see what research is available and then speak to the hematologist so I think a good um a good question an appointment would be is there a is there a an appropriate research program that that I could take part in um it's always worth asking the question um there may be something available um it may mean traveling um but and I know that MPE for instance are a very good resource for knowing European wide what's available um I'm not sure um how people would go about that but uh but there is lots happening with with new drugs with research pipeline in myeloma so keep up to date um keep an eye on uh on the the latest information on various websites on on our website for the UK of course um and ask your ask your team ask your hematologist ask your nurse specialist uh what's what's going on for for you thank you very much um the next question do you have a support group for carriers um oh now that's a good question I know it's something that we've certainly thought about and every single info day we have we um we always have a carer session there so I know that a few internet international guests have attended our London info day for instance so we have a very big carer session there um we have a specific patch for carers which you can download from our website um and certainly looking at a support group for carers specifically is something that's very much um in the forefront of of our work whether or not it's there yet I'm afraid I'm not aware but but certainly if it's not there yet it will be in the future well thank you very much uh that was our last question uh so thank you Ellen for for this interesting webinar and just remind you all that this webinar has been recorded and will be available in the mp website which is www.mpu.org and also in our youtube channel thank you very much for being here today and have a nice evening


The Jack Penney program, transcribed and presented by Lucky Strike.  No, nothing beats better taste. And remember, Lucky's taste better. Cleaner, fresher, smoother. Lucky's taste better. Cleaner, fresher, smoother. For Lucky Strike means, like a bagel, Richard tasting, like a bagel. Lucky's taste better. Cleaner, fresher, smoother. Lucky Strike! Lucky Strike! Friends, I think you'll agree that smoking enjoyment depends on the taste of your cigarette. For nothing. No, nothing beats better taste. And Lucky's taste better. Cleaner and fresher and smoother. You see, Lucky's better taste starts with fine, mild, good tasting tobacco. Remember, L-S-M-F-T, Lucky Strike means fine tobacco. But equally important, Lucky's are made better to taste better. Made round and firm and fully packed. That's why Lucky's draw freely, smoke evenly, and give you a cleaner, fresher, smoother taste. So, friends, get the one thing you want most in your cigarette. Better taste. On your next trip to the cigarette counter, be happy. Go Lucky. Ask for a carton of Lucky Strike. You'll find, Lucky's taste better. Cleaner, fresher, smoother. Lucky Strike! Lucky Strike! The Lucky Strike program starring Jack Benny with Mary Livingston, Rochester, Dennis A. Bob Crosby, and yours truly, Don Wilson. Ladies and gentlemen, last night, Jack Benny gave a party at his home for his sponsor. It's now the morning after, and we find Rochester with the aid of his boyfriend, Roy, cleaning up the house. I was too tired last night to get all these dishes, Roy. Yeah, there sure is a pile of them this time. Well, it was a pretty big affair. The president of Lucky Strike was out here, and since he's leaving for New York today, Mr. Benny gave him a farewell party. Again? Yeah. Every time the sponsor comes out to talk business, Mr. Benny gives him a farewell party. Well, why is that? To keep the sponsor from giving him a farewell party. Let's finish these dishes. Uh, how many people were here last night? Nineteen. Well, that's funny. I only counted eighteen dinner plates. Mr. Phil Ass was here, and he's not a food man. Everybody was here. Mr. Benny's cast, writers, musicians. Or were his neighbors, Mr. and Mrs. Ronald Coleman here? No, they were in fight, but they couldn't come. They both had coals. Well, isn't that unusual for both of them to have coals at the same time? No, they sat out in the rain all night to get them. Go and clean up the living room. Okay. You dust off the furniture. I'll empty the ice tray. Shall I dust off the piano? And the piano player, too. He's been there since New Year's Eve.  Okay. Now, let's see. It ought to be around here somewhere. No, it's not under the chair. It's not behind the sofa either. It's not in any of the corners. There, that takes care of the piano. Hmm. It's not under the coffee table. You know, Rochester, whenever I see Mr. Benny, he seems so dignified. How is he at a party? Does he ever let his hair down? What do you think I'm looking for? Good morning, Rochester. Good morning, boss. Good morning, Mr. Benny. Oh, hello, Roy. Say, Rochester, wasn't that a swell party I gave last night? Yes, sir. I thought the caviar was wonderful, and the vichy swad just right. Boss. The baked pheasant under glass was done to perfection. Boss. I thought some of the guests preferred the breast of Guinehan. Boss, you careful, Roy. He washed the dishes. By the way, Rochester, did Miss Livingston call? No, sir. She said she would. I'm supposed to go to an auction with her. Well, she didn't. There weren't any calls at all. You mean Frank Remley didn't call up to apologize? No, sir. I thought that by now he would have slept it off and called me. Well, maybe he's waiting for you to apologize to him. After all, he didn't want to leave the party. You made him go. Well, certainly I made him go. If I told Frankie once, I told him a thousand times. It's not funny when he grabs his guitar, jumps on Don Wilson's back, and yells, look at me. I'm Roy Rogers. It was embarrassing. Oh, it wasn't so bad. Not only that, but did you ever hear such lyrics to the Madame of Zell from Arm and Tears? I never heard such off. See who that is, will you, Rochester? Yes, sir. By the way, Roy, I really appreciate your coming over to help Rochester with the cleaning. Oh, that's all right. Rochester's my friend. I know, but I want to give you this money to show my appreciation. Well, thank you, Mr. Benny. You know, I'm out of a job, and it's hard for two people to get along on unemployment insurance. Two people? I didn't know you were married. I'm not. I have to keep lending money to Rochester. Yeah, I can't understand it. I pay Rochester a nice salary. What does he do with his money? Well, almost every year, you go to England. And to celebrate, Rochester throws a little party here, which puts him in debt. Oh, so while I'm away, Rochester throws a party here? How long does the party last? That depends on how long you stay in England. The party lasts for two months? Plus six days if you come back by boat. Look, Roy... Next time, why don't you fly back and join us? I'll have to have a talk. Oh, Rochester, who was at the door? It was Dennis Day. He's waiting for you in the den. I wonder what he wants. Boss, I think Mr. Day wants to show his appreciation for being invited to your party. He's carrying a beautifully wrapped package that looks like a gift. Well, that's nice. I'll go talk to him. Yeah, I wonder what Dennis could possibly have brought me. I always thought he was a silly kid, yet he's the only member of my cast to show his appreciation. Hello, Mr. Benny. Hello, Dennis.  Thank you.  I'm glad that you invited me. Well, here, certainly welcome, kid. By the way, Dennis, what have you got in that package? Oh, nothing. Oh, come on, kid.  What's in the package? Nothing. Now, Dennis, the package is gift wrapped and it looks so pretty. What's in it? Nothing. All right, if you don't want to tell me, at least give me a hint. Well, it's something a famous person wants wore. Something a famous person... Look, I'm no good at guessing games. What's in the package? Nothing. Oh, yeah, give me that package. I'm going to open it. Well, okay, here. Hmm. Dennis, this package is empty. I know. Well, Dennis, why in the world would you carry around an empty package? Well, that way, when somebody asks me what's in it, I can tell them the truth and still drive nuts. Well, that's about the craziest thing. Wait a minute. You told me that the package contains something that a famous person wants wore. That's right. Who? Lady Godiva. Can I try out my song now? Do anything. Just don't talk to me anymore. Okay. That kid drives me nuts. Love in your... You like my song, Mr. Benny? Aren't you going to talk to me, Mr. Benny? Sorry, I got your matter. I won't do it again. To be honest, I was only trying to have a little... Come on in. No, you come on out for a minute, Jack. I want to show you something. Show me something? Yeah. Come on. What is it, Mary? Can't you see? Mary. Mary, that new car. Is it yours? Uh-huh. Gosh, Mary, what a beautiful convertible. Congratulations. Well, thanks. Gee, a car like that costs about $5,000. That's right. Wait a minute, Mary. How can you afford a car like this? Well, after all, Jack, I've been working for you for 20 years. I know. So last week I went out of the bank, drew out all the money I saved, bought a raffle ticket and won the car. You see, Mary, I told you, stick with me and you'll do okay. Boy, what a car. Look how big the luggage compartment is. Gee, it certainly is roomy and... Wait a minute, I don't see any spare tire. Well, the car didn't come with a spare tire. Well, of all the nerve. That's awful. What do you want me to do? Go get my dollar back? Next time you buy a raffle ticket, read it carefully. That way you won't get stuck. Hey, Jack, I want to show you something else. Here, look at this. It's the latest thing. What is it? It's an automatic dimmer. When you're driving along at night and another car is coming toward you, their lights hit this little gadget and it automatically dims your lights. Gee, that's not so new. I've got the same thing. Jack, it's not the same thing. What? When another car passes your Maxwell, the wind blows your lights out. It does not. Let's go in the house. And then we'll go to the auction. Say, Mary, what is it if you're so anxious to bid on over there? Oh, nothing in particular, but sometimes you can pick up some very nice antiques. Oh, well, let's go in. I'll get my coat. Okay. Oh, look, Mary, there's Mr. and Mrs. Coleman out on the porch and Sherwood, their English partner, is serving him tea. Oh, yes. Hello, Ronnie. Hello, Bonita. He had to catch a cold. He wasn't even invited. Let's get in the house. Mary, when we get to that auction... Oh, hello, Mary. You didn't tell me Dennis was here. I know, I know. He's not speaking to me. Why, Dennis, what'd you do this time? I'll tell you what this silly kid did, Mary. Comes over here with a package under his arm that looks like a present for me. Makes me waste my time guessing what's in it. Then when he opens it, it's empty.  Gee, Mr. Benny, I'm sorry I made you mad. I guess it's no use. I better go. Goodbye, Mary. Bye, Dennis. Goodbye, Mr. Benny. Goodbye. That I'll say to you. Now go already. Oh, say, Dennis. What? I want you to offer my congratulations to your brother. I read in the paper that he's going to marry Anne Blythe. Yeah, that's right. But, Dennis, there's one thing that I don't understand. Your brother's name is McNulty, and your name is Day. Why is that? Well, you know how it is, Mary. When you get into professional life, sometimes you change your name. Oh, so you changed yours? No, he changed his. He didn't want people to know I'm his brother. See, Mary, it pays not to talk to him. Oh, stop, Jack. Tell me, Dennis, when is the wedding? In a couple of months. Everybody's going to be invited. It's going to be a big wedding with ushers and bridesmaids and everything. Who's going to be the best man? My mother. Hot girl, didn't it? Wasn't I right? But I wouldn't listen to it, would I? You better go. Yeah, OK. Goodbye. Just can't figure that kid out. Ireland itself is such a lovely place. I don't know why I invited him to my party anyway. Oh, by the way, Jack, why wasn't Bob Crosby here last night? Oh, Bob, oh, he's making a personal appearance at the Sahara Hotel in Las Vegas. Gee, I hope he calls me. Why? I gave him a quarter to put in the slot machine for him. I'll probably hear from him, you know. Oh, Mr. Benny. Yes, Rochester? There was a phone call for you while you were outside. Who was it, Bob? Bob, Bob, Bob, Bob, Bob Crosby? Bob? No, no, no, no. Was it Bob, Bob, Bob? Bob Crosby, Bob? Oh, Mr. Wilson. Oh, Wilson.  He's in Studio A at CBS. OK, I will. Excuse me, Mary. So what if I lose the quarter? Who cares? Hello, Gertrude. This is Jack Benny. Will you please ring Studio A for me? It's busy right now. Will you hold on? OK. Same able. What is it, Gaytude? Is Jack Benny on the line? Yeah, I wonder what the schmo of Kilimanjaro wants. No, Gaytude. I haven't seen Jackie since I was out with him. And Mr. and Mrs. Jimmy Stewart, I knew you'd see. Yeah. I don't know why I took you out instead of me. After all, he knows me longer. Say, that's right. You knew him before you came to CBS, didn't you? Certainly. I met him years ago at Sero's. Sero's? Were you the cigarette girl? No, I was parking cars. Well, you and Jack made a lovely couple new years. Ollie, you should wear your hair loose, hanging down.  Well, why? Ears, it looks like you're waving at somebody. I remember once at a masquerade party, you painted a face on each of your ears and came as the Andro's sister. Jealous because Jack took me out on New Year's Eve. Why should I be jealous? I was with that big handsome football player. Oh, yeah. You know, Gaytude, I was kind of surprised to find out that he was still in high school.  He must be. He's got a son at UCLA. Wait a minute, Mr. Benny. I can get your studio A now. Hello? Just a second, Mr. Wilson. Mr. Benny's calling you. Go ahead, Mr. Benny. Hello, Don? Yes, Jack? Don, did you call me before? Yes, I'm here with a sportsman quartet and we're rehearsing a number that might be very good for your television show next Sunday. What'd you say, Don? I said we're rehearsing a number that might be very good on your television show next Sunday. What was that, Don? Hey, fellas, I think the old man's getting a little hard of hearing. I heard that, Don Wilson. And don't call me an old man. Now, what's the name of the number you said would be good on my television show next Sunday? It's Glowworm, Jack. Would you like to hear it? Over the phone? Sure. At least you can get an idea of it. Well, do you have any musical accompaniment there? Yes, Reveley's still on my back. Good. Let's hear the number. Oh, Mr. Benny. What is it, Gertrude? Excuse me for listening in, but our switchboard's so busy. Can't you hear the song some other time? Well, this won't take long. But there's so many calls coming through and we don't have any open lines. Look, this will only take a few seconds. Don, tell the boys I want to hear the number. OK. Take it, fellas. It is calling yonder. Shine, little glowworm. Glimmer, glimmer. Light the path below a ball. And lead us on to luck. A beacon.  Night and day, it's you we're puffing. Only you, because there is nothing.  Lowly and lucky, glimmer, glimmer. Luckies taste much better, it's true. Yes, lucky's a small for you. LSSL, SSMFTV, LSSL, SSMF-TV. I want to use the phone. LSSL, SSMFTV. Boys, I want to hear the song Mr. Paley was trying to get on the phone. It was the whole clam-bay. Come on, Jack. Let's go. The auction starts at 2.30 sharp. OK. Let's get going. They sure seem to have a load of junk in these auction galleries. Jack, it's not junk. Most of these things are valuable antiques. That's why so many people are here to bid on them. Can I show you folks around? You still have a few minutes before the auction starts. Yes, I wish you would, but... But you don't sound like the type of person I'd expect to find working here. Ah, you all right, lady. See, I'm just here taking my brother's place. See, he's not here on the count of jury, Dory. Oh, your brother's on a jury? No, the jury did its duty and gave him 20 years. Oh, tell me, Clark, what are all these rings in this glass case? Oh, them rings? Well, they all figured in great romances in history. You see, the one at the center is the ring Mark Antley gave to Cleopatra when he got engaged. Well, that's Latin. It says, Hark, Victor, Semper, Novidium. What, uh, what does... What does it mean in English? Oh, you kid. Ah, I should imagine that. This peculiar-looking thing. Oh, that's a very interesting piece of art. It's an umbrella stand made out of an elephant's leg. Well, that's the most ridiculous thing I ever heard of. Who in the world would want an elephant leg? A tree-legged elephant. I'm waiting for it today, an elephant leg. That's without a doubt the most useless thing I ever heard of. Attention, please. Attention. Will you all please find seats? The auction is about to begin. Uh, let's sit here, Jack. Okay. Now, the first item on the agenda is this unique umbrella stand made out of the leg of the favorite elephant of the Maharaja of Suti Juldi. Now, who will open the bidding on this priceless curio? A bit of $100. Mary, did you hear that? How could anyone, how could anyone bid $100 on that piece of junk? Jack, you don't like it, but some people do. Now, keep quiet. I have $100. Do I hear more? $110. $110?  All right, all right. By the way, Jack, I meant to tell you, I ran into Bob Hope last night. $110. $110. $110. $110. Do I hear more? Bob Hope? How is it? Fine, but he seemed a little upset that you hadn't sent him his check for appearing on your program last week. But, Mary... $110. $110. Do I hear more? $150. But, Mary, I wasn't supposed to pay hope for appearing on my show. $115 is bid. $115 is bid. Do I hear more? $120. Well, Jack, Bob didn't understand it that way. He thought he was going to get paid his regular guest fee for going on your show. I'm bid $120 for this elephant's leg. $120. $120. Do I hear more? Well, Mary, what is Bob Hope's regular guest fee anyway? $5,000. $5,000. So, to the man who sets this up! Congratulations, sir. Here's your elephant leg. Check, please. Me? I didn't bid on that. I wouldn't pay $5,000 for an elephant's leg, would I, Mary? You wouldn't pay $5,000 for your own leg. Jack will be back in just a moment. But first, a word to cigarette smokers. Nothing, no nothing, beats better taste. And remember... Lucky's taste better. Cleaner, fresher, smoother. Lucky's taste better. Cleaner, fresher, smoother. For Lucky's strike means, find tobacco richer tasting. Find tobacco. Lucky's taste better. Cleaner, fresher, smoother. Lucky's strike. Lucky's strike. Friends, it stands to reason. The cigarette for you to smoke is the one that tastes better. Because when all is said and done, nothing, no nothing, beats better taste. And Lucky's taste better. Cleaner, fresher, and smoother. You'll agree once you try them. And here's why. Lucky's better taste really begins with fine tobacco. Most anyone can tell you, L-S-M-F-T, Lucky's strike means fine tobacco. Fine, light, naturally mild tobacco with a wonderful aroma and even better taste. And Lucky's also taste better because they're made better. They're round and firm and fully packed to draw freely and smoke evenly to give you a cleaner, fresher, smoother smoke. So get the better taste that fine tobacco and a better-made cigarette can give. When you buy cigarettes, ask for a carton of Lucky's strike. Be happy, go lucky, get better taste today. What's that you're carrying? An elephant leg. I got stuck with it at the auction. Finally have to argue and I had to give the man $130 for it. Here. Boss, what do you want me to do with it? Put it on and kick me. Good night, folks, not so soon. Jack, many programs brought to you by Lucky Strike, product of the American Tobacco Company, America's leading manufacturer of cigarettes. Stay tuned for the Amos and Andes show, which follows immediately on the CBS Radio Network.