Katie Bagshawe
Forum Replies Created
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So, I’ve recently joined WW (or what was known as Weight Watchers) to help me get better control of my diet and exercise and there is some really lovely simple dessert ideas, plus lower sugar cakes and buns to make.
This Jaffa Cake looks incredible and is a lighter version than making a full on cake. I would love to have a go at making this! https://www.weightwatchers.com/uk/recipe/giant-jaffa-cake/5c507441641aef002a1dc037
Has anyone also used Pinch of Nom? It’s a great website full of healthier recipes that you can use for all kinds of occasions or just general day to day eating http://pinchofnom.com/recipe/index/
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Wow Charlene, what a heartbreaking but inspiring story. I’m surprised I hadn’t heard of this before as it is such an awful tragedy for the team and all those involved, even the fans and the community. What a devastating impact it must have been, but a powerful message to encourage organ donation which as you say, can only be a positive thing.
We’ve had similar news here in England as a new law has been passed that means the population will be automatically opted in for organ donation unless they actively opt out. This reverses the old method where you had to opt in. This was on the cards for years as it had successfully been implemented in Wales, but was accelerated after a young girl donated her heart to a young boy, and the parents championed the need for there to be better systems at enabling organ donation to take place.
https://www.bbc.co.uk/news/health-47359682
It’s wonderful news that out of even the worst thing imaginable to happen, a domino effect of good has been triggered that in return will save thousands more lives as people choose to give the gift of life even after their own death. A bittersweet ending for some, but hopeful for those who will be relying on organs to save their future.
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Flu season is a big thing here in the UK now and there is a lot of marketing to encourage people to get their flu jabs. We’re pretty blessed with our NHS that it’s free to all over 65, to young children and anyone who will be vulnerable. However within Healthcare (and for the NHS) they set targets to ensure staff also get their flu jabs and you can’t really refuse to have it done. Chemists on the high street also offer it, I’m not sure if or how much they charge to the everyday person wanting it done, but generally speaking it is free if it is considered the person will be highly affected if catching it. We’ve had a fair few cases of even healthy people succumbing to flu which shows how dangerous it can be if caught and left untreated.
Unfortunately, as with all vaccines there a lot of myths pumped into the mainstream which put people off having it. I’m a big podcast listener and Sawbones did an episode last year focused on the benefits of having a flu jab and crushing some of the negative myths associated with it. Of course having the flu jab can’t protect you 100%, my Dad had the jab and still caught a different strain of flu which wasn’t covered in the jab but unfortunately that is something that can happen. At least protecting yourself in some capacity is better than nothing.
https://www.maximumfun.org/sawbones/sawbones-27-reasons-why-you-should-get-your-flu-shot
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So! I made the tea loaf and it was actually really lovely. It didn’t taste massively sweet but nice and fruity which makes for a nice change, and all the better knowing there’s no sugar in there as well. Would definitely recommend making and it was super easy to do so. I have got a picture of the finished result but I can’t get it uploaded so will share soon.
I’ll definitely try the mug cake recipe! I’ve made a few before but most of them have been rather dry so I will experiment to see if this one works out a little better.
Love a bit of sugar free jello or jelly here in the UK ha! It’s also really lovely if you can get the tubs of little meringue pieces with it? That and some tinned fruit makes a yummy sweet treat.
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Thanks for posting on behalf of Bill! It certainly sounds like he’s been through it these past few weeks and I’ve heard that the CPAP machines can be quite distressing. Has anyone had this as it seems to be common practice when admitted to A&E with low oxygen levels? Also, on the same note, how did people go about explaining their oxygen needs when being admitted to A&E as to the untrained Doctor, they can be a terrifying prospect to deal with and can easily often forget that your normal is not what they are used to dealing with or striving for. I also heartily agree that a lot of teaching to patients with ILD is taken and adopted from COPD learning which doesn’t always fit the bill. A lot of feedback here in the UK is that the exercise portion of pulmonary rehab is helpful but the educational aspect is pretty pointless. Sending my love to you Bill, and I hope all is getting better. I can’t believe the struggles you have with getting hold of liquid oxygen but sadly it was also an issue here in certain regions. Again, ridiculous considering the tremendous impact it can have on quality of life.
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Hello!
Sending my love to you Vijaya in this difficult time. A quick point on the above regarding the lack of oxygen bringing about dementia like symptoms, that has happened on a few occasions with my Dad. Usually in a morning when he was coming around and his oxygen levels were a bit all over the place, he would often appear confused and a little lost on what was going on. He wouldn’t usually remember these episodes, and they were short lived as I encouraged him to sit, focus on his breathing and turn his oxygen up a little until he recovered. I agree on what Charlene has suggested in monitoring oxygen levels and speaking to your HCP on this topic to ease your fears and concerns.
Regarding the topic as a whole, it is a tricky one to broach as a carer because I think it totally depends on how willing the person living with the disease wants to be at keeping fit and taking better care of themselves. Some will strive to outlive their illness by being disciplined at looking after themselves and keeping active, whereas others will feel the opposite and instead be filled with hopelessness that can bring about mental illness and ultimately debilitate them from looking after themselves. Of course this isn’t always a straight path, it will ebb and flow as the condition improves and deteriorates, perhaps day by day depending on how the individual is feeling.
My Father was mostly very willing and determined to stay active and to improve his strength. His first stay in hospital was for quite a long period of time where he lost a lot of weight and muscle mass, this wasn’t that long after his diagnosis in fact. Most of his willing was because he knew he would be a better candidate for a lung transplant by trying to show his determination. However, as carers I’m sure we can all do something to assist those living with lung disease or debilitating illness to encourage them to remain independent and as mobile as possible.
Figuring out their strengths & weaknesses.
Dad was brilliant at wanting to remain control over his oxygen so I left him to his own devices when it came to refilling his tanks or checking his supply and needing to order anymore. He would tally how many times he filled his oxygen throughout the day and keep records. Any odd jobs, bits and bobs I would get him to do, even so much that when Mum had an accident in the Land Rover, he sat outside on a little stool and figured out how to change the parts by himself (he was a mechanic so it was an easy job for him) and all I had to do was provide cups of tea. It just so happened his GP dropped round for an unexpected visit and was stunned to see how he was just plodding along as normal despite being on such a high flow of oxygen.
There were of course areas he needed some help with. Personal hygiene, getting dressed, making meals and such. I did as much as I could to keep him involved in doing this activities with me, but by breaking them down so he didn’t feel overwhelmed or rushed. In a morning I would wheel him to the bathroom, he would sit on a stool by the sink and wash himself, I always encouraged him to take his time and to enjoy the sensation of the water on his hands. Sometimes I would put a few drops of essential oils in there like lavender or eucalyptus for a bit of extra calming or invigorating. I would put his clothes in close reach and he usually was able to dress himself if he took his time. I always hovered around to check in but this was a great opportunity for me to make the bed, have a clean around the house and make his breakfast if he hadn’t yet had any. But I think it started the day well for him knowing he had had control of getting up, dressed and ready for the day as normal.
If making dinner or cooking I was happy to do this by myself as I find this quite relaxing. Instead he would read his books or I’d find a film for him to watch on the tele. Usually we would try to go for a run out each day, even if it was just a drive round and having a coffee in the car so he wouldn’t feel like he had cabin fever. There were small walks we did together as well where he was able to improve his strength so much so that he was able to carry his oxygen on his back without needing something to lean on, perhaps just his umbrella as a walking stick. Sometimes though if it had been a quieter day I would get him to help me by making his excellent scones, usually getting all the ingredients on the side so all he had to do was weigh them and mix them together up until they needed to go in the oven.
Overall most importantly I think you need patience and compassion as a carer, which can sometimes wear thin and sometimes it can feel difficult to hold onto. Personally, if you feel your loved one isn’t motivated to try then maybe trying small steps to make them feel like they have control in some areas. We have to remember how hard it must be for someone to feel so vulnerable, and for my Dad he always talked about his feelings of guilt and being a burden which discouraged him from trying on some days. These feelings can come out in sadness, but of course misdirected anger as well.
If the situation is continuing without much change, then I would encourage finding someone to talk to so you can express your emotions away from your loved one and be able to return with a much clearer frame of mind. Looking into accessing mental health services is absolutely vital for the both of you as well since the psychological toll of illness can be absolutely devastating on relationships and mood. Write a journal, or find similar positive outlets to express your own feelings and don’t feel you always have to be strong. It is important to acknowledge your own feelings of fear, sorrow or anger so it doesn’t build inside and encourage negative situations.
Caring is all trial and error, and it is never a straight path. We all find areas that work for us, and we will all approach it differently. What I would say is important is encouraging them to remain independent, doing what you feel is best at involving them in doing activities together but likewise being patient that it can take time. Be mindful of how it can change day by day, and try to remain a positive aura as that will hopefully feed them into knowing their is life ahead and memories still to be made. I know it’s all easy sitting and reading this, but difficult to act it out. Just remember to take care of yourself, seek guidance and support from someone you trust and be sure to communicate with your loved one so you can both understand your feelings and fears, but also figure out what you can do to help each other out.
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@roger-coles ,
oO if you like Jo Nesbo and the Stieg Larrson series, there was a similar one I got into the year before last by Samuel Bjork. I believe the third book in the series comes out sometime this year but I adored the first two, very similar in the Nordic crime thriller but again, it has some unique and complex characters mixed in. A nice easy read. https://www.penguin.co.uk/authors/1074424/samuel-bjork.html
You suggested Kindle and I was wondering what peoples verdicts were on e-reading? I have been tempted many times as so many people have raved about them, and I know it would make my room a lot less cluttered with books! Some people swear by them and some people (myself perhaps included) would be more akin to old fashioned paper style books. What is everyones opinion and any recommendations if I were looking into buying one?
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Outlander sounds familiar. Did they turn that into a TV show?
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I was chatting with a work colleague the other day who showed me some drone footage he took in the Yorkshire Dales that looked stunning! However, I wouldn’t trust myself with such an expensive piece of kit.
A part of me was considering a GoPro for when I’m travelling so that I can shoot videos as well, but I still like the idea of traditional still photography so I might take my DSLR with me to Washington in June to have a play with some landscape photography.
I used to work with 35mm as a Projectionist at the cinema before it converted to digital. Miss those times!
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Hi Jean, the French system sounds the same as us in the UK in that relatives can block consent even if the person made it clear their wishes were to donate organs. They still actively encourage the conversation to ensure this doesn’t happen. There has also been press coverage lately regarding how some organs are wasted because of a lack of resources to actually transplant, this is pretty disappointing to hear.
The anonymous tool is there definitely, although donors and receivers can contact each other but the Nursing team usually arrange and sort this after the fact. I can understand from both points of view why people would or wouldn’t want to be anonymous. I read a book recently about two boys whereby one donated his heart to the other, it was devastating to read, especially from the point of the view of the mother who lost her son and the tremendous grief she felt but by reaching out with the donor she felt a part of her son was still alive. However, it must be a very complex and difficult road to navigate on both parts.
This video brought me to tears when I saw it on Twitter, it also seems to have been adopted to be more of a common practice now in hospitals to show respect to those about to do the ultimate sacrifice in donating organs after death. Such a wonderful honor and notion to do.
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@ramblingolfer (Bill),
Glad to hear you’ve tried a variety of options, and I’m sorry to hear that most of them seem to be so unsuccessful. Unfortunately they were the only options we had available to us, with the exception of when Dad was admitted and he was using a humidifier alongside his oxygen. I’ve never seen this available in the community. Have you seen or heard if this might be available to you?
I would suggest perhaps contacting oxygen providers in your local area to see what they can offer and maybe even be a bit pushy with them. It was always available here and we were lucky to have an excellent driver who went above and beyond but in some regions of the UK you really have to put your foot down about it being delivered. Just like Gary we had a big tank delivered twice a week that we would refill in two to three flasks that would last an exceptionally long time comparing them to the bog standard air flow. It gave Dad such a lease of life to keep going knowing he had more oxygen to fall back on. I’ve spotted a few companies advocating for improvements in oxygen supply to those needing it and being innovative with new technology. I cannot for the life of me remember the name of the company who contacted me a few years back so I will look into them and get back to you.
As for the medication aspect, have you talked with your Doctor about how you feel? Here in the NHS the drugs for PF are only available to people that lie within certain percentages on their FVC results. If you’re too well or too sick, the drug won’t be prescribed on the NHS which, quite naturally, has caused a lot of outrage at being restricted. My Dad was never able to take any as he was too poorly. I would suggest chatting with your Doctor and asking him to do some investigating into research available to see where the meds can actually hinder your disease if it progresses past the point you feel you can cope. Sending my love to you.
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Thank you Mark! I was fortunate in my time acting as a Carer for my Dad that I was able to study a Masters of Science in Psychology and focused my dissertation on the Psychological Impact of Pulmonary Fibrosis whereby I interviewed patients on the mental health impact. Learning about Psychology also helped me understand my own mental health a lot better so it feels less of an enigma, and more something medical that I can approach. I heartily recommend doing some studies in this area as it’s such a broad and interesting topic. I hope to continue my research in the future, I start a Diagnostic Radiographer course from September and hopefully will pursue research into Interstitial Lung Diseases from both a diagnostic and psychological point of view. Fingers crossed.
This is an interesting blog to find easy reading about Psychology topics. I’ve written a few articles from them focusing on Health Psychology.
https://www.psychreg.org/katie-bagshawe/
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Alas not from Wales but Derbyshire in England, about a two hour drive from Hay on Wye. It’s such a beautiful place though isn’t it? A whimsical little town in the middle of the stunning Brecon Beacons, we stayed in a cottage nearby a few years ago whilst the festival was on and had the loveliest summer days exploring the area. If you’re ever in the area then be sure to visit Derbyshire, very similar with the quaint little towns full of antique stores and lovely little knick knack things.
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oO yes I think I did pick up a Jodi Picoult book last year that I haven’t gotten round to reading just yet. I’ve heard good things about her, especially considering I like Alice Hoffman and it’s similar sort of writing styles!
I will look into the Sarah Knight book as I’ve seen it in the bookstore a few times and I love an easy humorous read like that if you need something to wind down to. I truly recommend This is Going to Hurt by Adam Kay, it’s also an easy read but absolutely hilarious. They are his memoirs of training up as a Doctor, and whilst there are some serious notes in there, most of really has you laughing you socks off at the situations and patients he’s had to deal with.
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Hello Mark, thank you for your very kind response. It’s always nice to feel part of a team, especially when you might feel isolated in your illness or isolated as a Carer. I think relationships can easily become very strained if there is no communication, but people also solely label themselves as patient and carer and forget what life was like before. We want to be independent so it’s hard to put that responsibility of your health on someone else’ shoulders, but at the end of the day, it can also be a cathartic experience of learning more about someone which is how it was for me and Dad. We were close before his illness, but I learned so many new and wonderful things about him as his Carer so I will always be grateful for having had that time with him. It has certainly helped in my grief knowing I was fortunate to be close with him and to spend time with him whereas my other siblings and Mother had to work and therefore probably sometimes feel they lost out a lot in his final years. It’s an uneven rocky road, but like all aspects of life if you figure out how to make yourself happy, it will be infectious to those around you.
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Hello Jan, I agree wholeheartedly with your attitude and feel the same. Of course we can’t always be positive, but in the last year or so I’ve found a new attitude in just accepting what you can and can’t do. Let me tell you, boy it is like a weight off your shoulders in just knowing what you can and can’t do, and not putting that pressure on yourself to strive to be something you can’t. I guess having lost my Dad, I’ve faced the worst thing imaginable to me, it was my greatest fear losing one of my parents at a young age and having been forced to live through that, it’s a bit like accepting that things can only get or feel better. Of course, life is always testing in a lot of ways but more importantly I know he would want me to live in happiness than to live in the sadness of his death. His spirit lives on in me and I want to make up for the time he’s lost, and I know that can’t be achieved by feeling sorry for myself all the time. The only person who can make you happy, is ultimately yourself. And you all deserve it. I love that you live even the hardest things with humor, it’s a brilliant coping mechanism not just for you, but those around you who may not be certain on they can help. Just being a friend, being there and allowing you to feel like yourself is a blessing.
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Nice to hear from you Bill and that things seem positive for you considering everything you’ve recently been through. My Dad struggled a lot with the cough also, it was very dry and if it got bad it really triggered his exacerbation. Have you tried eucalyptus oil? That’s brilliant, very similar to menthol in that it’s very good at helping your breathing feel a bit clearer. I always have a little bottle handy when I’m under the weather and feeling bunged up. Either a few drops on a tissue/handkerchief or putting some in some hot water to inhale helps with clearing the nose out a bit, that or a few drops when you’re having a bath. Did you struggle with your nose feeling dry because of your oxygen being so high? Dad always had really dry skin and I knew that was uncomfortable for him, I recall the Nurse recommending water based gels like KY Jelly around the rim of the nose to ease that awful dry feeling. My Dad used a little morphine and his symptoms were quite low actually, have you tried it before? That worked wonders with his cough but alas can make you feel quite lethargic which isn’t helpful when low oxygen can already make you feel that way also.
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Thanks for sharing this Mark, it’s super helpful to know how it might compare. How did you feel post transplant as well? I guess it must be extremely difficult because there are still so many risks to your health, but also knowing this is a clean slate in a lot of circumstances. It would really interest me to interview transplant patients before and after to compare feelings and emotions to see how/if it compares to those aren’t able to receive transplants. But also to see the journey of emotions on the transplant journey.
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My Dad always felt the same with his down days, but myself having lived with depression ever since I can remember, it’s absolutely important that some days you have to accept you can’t fight the blues and just let them weigh you down a little bit. Of course it’s vital your life doesn’t always feel so down, and you find positive mechanisms to cope with these subdued periods, but equally it’s exhausting always trying to frame things positively or to force yourself to feel something that you just can’t. If he was having a bad day I would always tell him, it’s just one day. By tomorrow you might feel different again, and it’s better to believe tomorrow will be better than it will be worse. I’m sure it’s the same living with PF, some days he felt physically better than others and it is never a straight line, it’s a rocky road going up and down. I think even on the down days a part of you will believe it can be better than this, so as long as you have that thread of hope, you can feel a bit down all the while knowing that the next day will be a new one to enjoy.
Journalling, writing, hobbies and all sorts are always going to be good distractions as well as active coping, encouraging yourself to stay active, to stay informed of your health and how you can ease symptoms. When I did my Psychology research I looked a lot into the coping mechanisms we have instilled and how it can go good but equally how it can go wrong. I did start writing a blog entry for a website about this but alas never finished it. I’ll break it down a bit below if it helps though.
Active vs Passive Coping
So, you might already be able to figure it out but there is a theory of coping called Active vs Passive. Someone who actively copes with a circumstance adapts by physically and emotionally finding ways to cope. This could be by altering tasks to make them easier to do, seeking new habits that can improve health or planning ahead better such as facing financial uncertainty so stowing away a bit of money. It could be seeking out information, attending support groups or even actively not completing tasks knowing it could make things worse. Passive coping is the opposite, it’s basically a bit like burying your head in the sand or even just giving up and accepting things without trying to make your life easier. As you might guess, the former is considered a better tactic than the latter, but it’s open to interpretation and of course varies depending on the circumstance on which we cope. This method is usually looked at when assessing chronic ill health, usually mental health as well but of course can be something to consider when looking at how you adapt to facing a diagnosis of PF, both as patient and as carer/loved one. I’ll attach some journals below for you to read if it’s interesting, but hopefully it might encourage a bit of active coping knowing this will benefit you more when adjusting your lifestyle and routines.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3466354/
https://healthskills.wordpress.com/2011/04/05/what-is-coping/
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I am very lucky indeed to have this gorgeous national park on my doorstep. It’s celebrating 70 years since it was created this year, and it’s also the oldest national park in the UK. Lots of history to it but lots of interesting mythology and ghost stories to be shared as well! Can’t wait to get out with the camera and hopefully share some stories about my home county with you all.
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Ah yes I remember the Canadian architect, I didn’t realise it was part of a competition until they told us. They told us about how no matter what angle you stand at ground level, you can’t see down into the second pool where the water falls and this symbolises loss and grief and how you will never get that person back. I really connected with this notion, it’s a strong desire to want to see but you’ll never be able to. Both heartbreaking and frustrating all at once. They also have the names grouped together by significance at the request of those who knew them rather than in any other kind of order. So some names are together because they worked together, but there was one where a girl had requested both her father and her best friends names be together which came to pass so she can visit them in the same spot when she visits the memorial. Lots of thought when it to the design that makes it all the more poignant. It was a beautiful area in general to visit though, did you go into the new subway station where the big shopping area is right next to the museum? It looks like a giant rib cage, it’s architecturally magnificent!
You sounded just as busy as us! How long were you there for? Had you been at Christmas time before? I really want to go back in the Summer as we never had chance to see Central Park properly with the daylight hours being limited in December. Sounds like you did a lot of similar things to us. We did Empire State Building, Bryant Park and New York Public Library, Rockefeller Centre and Top of the Rock, 9/11 Museum and top of the new One Trade Centre building, Statue of Liberty as well as St Patrick’s Cathedral and Saks Fifth Avenue, oh and we had food in the Plaza Hotel which was gorgeous too. Not bad considering we were there three days! Our hotel had a rooftop terrace/bar but unfortunately it was closed out of season which was a bit gutting. I truly recommend Washington DC as well, I can’t wait to go back in June. And Boston too, one of my favourite places!
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Oh wow your holiday already sounds incredible! I would so be there if it wasn’t for the fact I have study commitments starting in September that are going to be tying me up for the next couple of years. I love the idea of snorkeling and would love to have a go at paddle boarding as I know I would be rubbish at surfing. I love Bethany Hamilton too, I watched the film they made about her a couple of years back but always thought she was a huge inspiration to so many via her talks. My parents only stayed on Oahu but absolutely fell in love with it, I so cannot wait to finally get there myself one day! Can’t wait to hear what you get up to.
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Thanks Mark and lovely to meet you! Landscapes and seascapes are the best kind if you ask me, they can be rather invigorating for the soul and it’s a lovely way to capture a special moment. I’ll keep sharing the more I get into it!
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Couldn’t agree more! I love watching medical documentaries and was watching one a few months ago that was following teams working in critical care units. By chance a man was admitted with a serious chest infection, only in his early fifties I believe and it was first understood that it would be a reversible illness. Unfortunately as the episode progressed, the man got progressively worse, was intubated and after a series of diagnostic tests it was confirmed that he had Pulmonary Fibrosis. I was literally gobsmacked that they had covered it in their show, and to the extent of how cruel and sudden the disease could be. Unfortunately the man featured died a few days after being admitted. From the beginning of the episode he seemed fit and healthy, wasn’t necessarily relying on oxygen (he hadn’t been using it at home at all) and in the space of a few short days he had passed away. All in all it took up less than ten minutes of the hour long episode, but it was a double edged sword to see the sadness of his loss, but the bravery of his family for allowing them to feature his story and raise awareness. I’m not sure if it’ll be available outside of the UK but I’ll see if I can hunt down the episode to share just in case.