Calling all triple negative breast cancer patients in the UK
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Hello Kath and HelenLouise,
I have been wondering what has been going on with you far away in Australia.
I know that you, Kath, were very, very busy with your work. Here in the UK Covid (Delta-Omicron) has very much not gone away and many people have been affected.
helenLouise, I am hoping that you are keeping well and that everything is under control.
I would like to hear from you both.
Love and best wishes.
Sylvia xxxx
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hi Sylvia, Gill, and Sue
Sue, I went to Scotland at the end of Feb into March, I've been posting some stories of trip to email because we couldn't get on site. So bear with me here!
If I'm repeating myself, Sylvia and Gill, please forgive! I only wanted to say a little about Isle of Skye, or as Scots call it, Skye. It's only a bridge away from Northern Scotland, but its a different world. There are still castles, and mountains, but as you go north on Isle, magnificent vistas open before you. Lots of sheep graze the lush grass, and white houses dot some of the hills, it looks somewhat Scandinavian. I'm glad we were there when we were, Gill said late Spring brings biting flies. And not many tourists, we were able to travel without congestion. And for my friend Doug driving on the wrong side of the road, well done! He was helped by very little traffic.
So ill stop there, I hope all of you are doing well heading into this weekend. Sue, I remember well when people would tell me to enjoy the weekend. Sometimes that wasn't possible, but we only have to do what we can do at times.
Talk soon, love, Mary
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Hello Sylvia, Mary and Sue,
Sue, I do hope that you're coping with the various side effects of chemotherapy. I found they became much worse towards the end of treatment. I did get through it though and so will you. I used the recommended mouthwash, but the ulcers persisted, I know how annoying they can be.
The new site allowed me to stay logged in overnight for the first time! Not so slow today either.
Michael went to London on Tuesday for lunch with his old colleagues from lecturing days. One emailed on Wednesday to let him know that he'd suddenly become unwell on the train home and had just tested positive for Covid. Michael became ill yesterday, with a sore throat, deep, barking cough, runny nose, aching joints and tiredness. I'm dismayed by how quickly a heathy person can go from feeling well to becoming ill. Michael tested negative for Covid yesterday - which is probably wrong. We'll do another today, but only have a couple of tests left. I've been trying to apply for extra tests on the NHS website, but keep filling in all the details, waiting for the personal code to be texted and in every single instance, have been timed out. I'm absolutely livid! In the meantime, my daughter has informed me that the Government will no longer supply masks to GP surgeries. She's unable to get hold of lateral flow tests either. Infection rates are rising, despite so few people testing and registering results. My own GP surgery is closed due to staff being at home with Covid. This isn't over.
Mary, I'm pleased that you were so taken with Skye, my son loves it there. He's a very keen runner, hiker and general outdoor type. The highland midges can spoil a holiday though.
Sylvia, try not to do too much this weekend. It's sunny here this and I'm hoping for some sunshine for you too.
Have a peaceful weekend all of you.
Love,
Gill xxx
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Thank you for your replies Gill, Sylvia and Mary,
I am taking one day at a time right now. I even rejoice in a few minutes of feeling okay enough to walk outside. My bulbs are blooming and my lilac trees (my favorite) are budding, so I take that as a good sign and a hint that I need to be outside.
Mary, your trip to Scotland sounds amazing! I have always wanted to head across the pond to see England and Wales. Scotland has always looked beautiful, but cold. I'm not someone who likes the cold very much.
The keytruda is only a periodic infusion, given in the first of a series of 3 infusions. So I had keytruda on my very first infusion (that was a surprise!) and on my 4th and 7th. I'll have it again this week on my 10th infusion and then will have only 2 "regular" infusions left in round 1. I have an ultrasound scheduled so the doc can compare the size of the tumor with the ultrasound I had in December. Then we'll talk about what's next. The original plan was a second round of chemo and then surgery.
I was a chai tea drinker before, but have been drinking ginger tea. It helps. The last few weeks, I've been trying to eat when I can. Often I just don't feel like I want to eat much. Food tastes different and often makes me feel ill. On the 2 days right before infusions when I feel better, I usually want to eat.
I just wish I could work up the energy to walk a bit more. I've been a walker my whole life. It's hard to work up the motivation on these difficult days and even on the good days. I know how important it is to move my body, but that doesn't help on the tough days.
In the US, April is poetry month. I've never been much of a poetry person, though I've tried to inspire many of my young students to try writing different types of poems. One of my students wrote a book of "Grati-kus" dedicated to the teachers in our school. (April is also teacher appreciation.) I texted his mother to see what he's working on this year. My writing group (which I've not really felt well enough to participate in right now) is doing a poem-a-day. I might try that one this year.
Anyone have a favorite poem or do some poetry writing. I'd love to read your favorites!
Thank you all!
Love, Sue
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Hello Sue,
I have just remembered the name of the product that is good for sore mouths during chemotherapy treatment and as a routing product at any time for sore mouths, mouth ulcers and dry mouth. It is called Biotene.
I was doing some reading this week with more information about healthy eating. The same products become very familiar. These are what I picked out.
Turmeric, vitamin D, Omega 3, probiotics, and multivitamins, Ginkgo, B12. As I said, I prefer the food when possible rather than pills. These are some of the food products. Kefir, Kale, salmon (wild salmon is best), mushrooms, goji berries, cranberries. Some food products go in and out of popularity.
I was also reading about food for healthy eyes and this is what came up. Oily fish, nuts and legumes, seeds, citrus fruits, green leafy vegetables (spinach, kale, collards), carrots, sweet potatoes, beef, eggs, oysters and pork.
It is easy to see the importance of getting a varied diet.
Have as good a weekend as possible.
Love and best wishes.
Sylvia xxxx
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Hello Gill,
I was sorry to read that Michael had become unwell yesterday and that it may be Covid. Since he tested negative for Covid yesterday, it could be flu. Whatever it is I wish him well. Have any of the other colleagues been in touch to say they have tested positive for Covid?
Apparently, the NHS does not have any test kits left, or at least that is what a few people have told me.
It looks as though Covid is back on the news. I listened on the radio yesterday and today and there was quite a lot of coverage. Apparently one in fifteen people now has Covid in the UK. It was also mentioned that hospitals are in trouble with it because, due to staff shortages, patients with other illnesses are being mixed in with Covid patients. They no longer have enough staff to keep separate wards open and there are about four Covid patients mixed in with non-Covid patients in each ward.
There has been so much negative reporting about wearing masks and how they do not work, that people are doing what they like. It is especially bad on public transport in London, with very few people wearing masks. People are acting as though the virus has disappeared.
Apparently people over the age of seventy are particularly vulnerable and people are still dying of Covid. I remember how my cousin in London picked up Covid when he was in hospital.
We are in so much trouble in this country and our government is not up to par. All Boris cares about is saving his skin.
Raymond and I are trying to have a more relaxing weekend. It is sunny and dry here, but bitterly cold. I do love watching the Spring flowers and shrubs coming into bloom.
Take care, Gill, and give our best wishes to Malcolm.
Love and best wishes.
Sylvia xxxx
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Hello Mary,
I can see that you enjoyed Skye. Your holiday to Scotland will be one that you never forget.
What is the latest news on Covid in your neck of the woods? The latest news I had was that it was very bad. On the radio today it said that Covid here will come and go in waves and that we could get some nasty variants.
I hope you are keeping well and not overdoing things. I know that you can get very busy. Are you still doing lots of reading?
I like to read and there are many books being published that sound very interesting. They are expensive to buy and not available in our libraries, which, like so many things, have not been kept up to par. There is an interesting book published recently by Francis Fukuyama. In the past he wrote the End of History. The latest book is called is called Liberalism and its Discontents.
That is about all for now.
Love and beast wishes.
Sylvia xxxx
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Hello everyone,
Michael has just tested positive for Covid and his cough has turned into a chest infection. It seems inevitable that we'll all catch it at some point. Please take care all of you.
Gill X
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Hello Gill,
I was very sorry to read just now that Michael has just tested positive for Covid and that his cough has turned into a chest infection. Is he on anything to treat this? I do hope he will make a quick recovery.
Please let me know how everything goes.
Take great care of Michael and yourself.
Love and best wishes from both of us.
Sylvia xxxx
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Hello all,
I can't believe that people are acting like COVID has disappeared. That is the mentality here in the US also. In New Jersey, our positive cases have increased, but deaths from COVID have not. They attribute that to the vaccine and boosters. I also get emails from my school periodically that report cases in my school, and though they seem to be lower, they still exist--in fact 2 this past week, both children, but thankfully not a severe case.
I will try the Biotene, thank you Sylvia. My mouth is very dry at night, despite a humidifier and all the water I drink. Aside from that, I actually started to feel slightly human last evening. That seems to be the pattern after an infusion--3 days of miserable, 3 days of okay and even good, then another infusion.
It's cold, windy and stormy here lately. Not great weather to go outside. I miss playing golf this spring. I've sent my husband out a few times for some mental health days for him.
Enjoy what's left of your weekend.
Sue
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Hello Sue,
Thank you for your latest post.
News about Covid is starting to come back in the news here, having been virtually forgotten because of Ukraine. We are still getting a lot of cases and the latest news was that one in fifteen people in the UK has now been affected. People do not have to wear masks any more or indeed do social distancing, but common sense should tell them to do this. We are still getting deaths.
Our government has not been setting a good example. You might have heard all the scandal about Partygate. Our government workers living it up with parties at Downing Street, while telling the rest of us to stay at home.
I found an interesting article in a magazine that I was reading from the British Heart Foundation. It was entitled Learning to live with Covid. This is part of it.
"We used to think that Covid-19 was spread by droplets, such as when an infected person coughs or sneezes, but we now know it is more likely to be airborne, in particles that we breathe out, which stay suspended in the air. That is why good masks and ventilation are so important. Opening a window brings fresh air into a room and removes older air that could contain virus particles".
It further says that although masks are not compulsory now, it makes sense to wear them indoors, on public transport and in crowded outdoor places.
Apparently the best masks are FFP2.
Take care of yourself as you go through chemotherapy. This journey will come to an end and you will get back to all the things you cannot do at the moment.
That is about all for now.
Love and best wishes.
Sylvia xxxx
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Hello Gill,
I was just wondering how you and Michael were getting on. I do hope he is beginning to feel better and I do hope you have not caught it.
The forum is still not making a lot of progress. I posted to Sue, but still had to sign in. Also, I do not like having my photograph on my avatar with my head cut off! I asked for this to be corrected or removed and before I log in it has an "S" and then when I post it comes up with the headless photograph. This is not acceptable. The whole thing still looks bland.
I do hope Mary will post regularly and I would love to hear from Kath and HelenLouise. I do hope we have not lost them because of the mess up with the forum. It was so good to know what was happening in Australia.
Thinking of you and sending best wishes.
Sylvia xxxx
By the way, very recently we just started a new page on the thread and that page lasted for many posts. It has already gone to a new page, so that is something else that is different and may not be working.
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Hello Sue,
Dry mouth is another common side effect of chemotherapy. As saliva helps to protect teeth from decay by washing away sugars and diluting acids, it's important to keep your teeth as clean as possible. Not always easy going through the whole brushing, interdentals and flossing when you're feeling unwell - but well worth it.
Love,
Gill xxx
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Hello Sylvia,
I don't think I'd appreciate being headless either. I didn't need to sign in today, but do have to re-enter the details of my chemotherapy. 'Other' isn't very useful to members wanting to compare treatments of find out more about a particular chemotherapy type, side effects etc.
Michael seems to be recovering, but isn't out of the woods yet. His cough isn't nearly as worrying as it was a few days ago, but his cold symptoms remain. I woke up this morning with a painful throat and blocked nose. I don't want to waste another lateral flow test at the moment. I'm beginning to think that I may as well be infected and free of the worry for a while. We'll all be infected sooner or later, but the vulnerable, including those undergoing chemotherapy and immunotherapy need to be protected. Tests need to be readily available, masks should be worn and social distancing should still be the rule - and still would be if we had a Government that actually cared about people.
Keep safe both of you.
Love,
Gill xxx
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Hi Gill and Sylvia,
Gill, so sorry to hear about Michael. I hope you remain well and that you are both speedy healers.
The COVID news here is much the same as in the UK. Our governments have bowed to the squeaky wheel and reduced the mask mandates and other safeguards. I was glad to read that in my school district, many of the restrictions we'd put in place are still in force, even though mask wearing is optional. There was a report of a case last week in a child. It always made me nervous that we had restrictions in school, but didn't know what the kids and families were doing to stay safe outside of school.
I thank you all for the advice about my mouth. I've had sores on my tongue as well as inside and outside my lips. The doc didn't seem to concerned about them, but they were bothering me. This week they seem to be better, but my mouth is very dry. I started the Biotene yesterday. It worked most of the way through the night. I'll continue with it today. I know how important dental health is, but it's really heard to brush and floss effectively when my mouth hurts so much. I got softer toothbrushes and change them more often. I also brush and floss more often, to alleviate any buildup of food. Hopefully, that will help.
Wednesday is my Keytruda infusion, along with the regular Taxol and Carboplatin. I'm a bit stressed about the side effects added with the Keytruda. The days following a regular infusions have gotten difficult enough. Add in the Keytruda and my stress increases. I keep saying that as long as everything is doing its job, I will try to power through those hard days. But it's not easy, as I'm sure you all know.
Thank you for the support. It's so helpful!
Love, Sue
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hi Sylvia, Gill and Sue
I'm so sorry to hear about Michael, and to hear Gill is not feeling well either is dreadful. But then I read Gills' post that Michael is better, hurrah.
Sylvia, in my part of US people are not paying much attention to Covid. But on Monday night I had a phone call from a friend, we had chatted briefly in a store the day before and then she had tested positive after learning she'd had a close contact. So now I am a casual contact. Ugh so tired of all this.
Sue, I just can't imagine going through chemo while all this Covid drags on, it must be worrisome. I think it's a good idea to do smaller doses weekly,. Even though my treatment was only 7 years ago, it seems like it was the Dark Ages. I remember being given a heavy dose the first time, to get it over faster, as the Doc said. After that they cut the dose, it was too much for me, I think.
I'll be back later, we just had big thunderstorm and it sounds calm again.
Take care, Gill, glad Michael is better and I hope you do not get to be Positive.
Love, Mary
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Hello Mary,
It was nice to hear from you. It looks as though the majority of people somehow think that Covid has gone away, and, of course, it has not, far from it. Cases are going up here. This latest variant is highly infectious, people are being lax, and so it is spreading. The latest news is that the two groups most vulnerable are babies through children to age 9, and then the over 60s. Some people are being called in for the second booster and seem to be having either Moderna or Pfizer. Raymond and I have not been called and I have reservations about any more vaccines. There are lots of rumours going around about Pfizer and a big dossier that it was trying to keep secret for the next 75 years! On one news programme it was being stated that the vaccines do not work. I do remember Chris Woollams being more positive about AstraZeneca, a traditional vaccine, rather than the new RNA vaccines.
I do hope you keep in the clear.
As you said to Sue, it must be very difficult going through chemotherapy with the coronavirus raging.
It is a sunny but very cold day here today, but Exmouth is getting busy with tourists as it is the school holidays.
You might like to have a look at the Daily Sceptic online. I found it very interesting to read.
I do hope that Kath and Helenlouise will come back to us. It is interesting to have news from other parts of the world. I do wonder how adagio is getting on and whether she is now leading a normal life.
Keep safe, keep well and keep in touch.
Love.
Sylvia xxxx
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Hello Gill,
I do hope Michael is feeling a lot better and that you have not tested positive for Covid.
In a way, it is true that we might as well get infected. At least then we should have very strong antibodies that protect us more than the vaccines. These vaccines do not last long and who wants to be having vaccines every three to six months? I cannot think that it will help the body to keep a strong immune system. Raymond and I will keep ourselves to ourselves and wear masks when in shops and keep to social distancing. I see where we live that some residents are not being sensible and have visitors going into their apartments. They seem to think and have even said that being with friends is alright they must be free of Covid!
Our government seems to have switched off Covid and the vaccines and the Prime Minister is too busy trying to be a war leader in the hope that party-gate will be forgotten. It is not just about party-gate, it is about dishonesty, constantly telling lies, being rude, and changing his mind.
That is about all for now.
Keep well, keep safe, and try to keep healthy.
Love and best wishes.
Sylvia xxxx
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Hello Sue,
I am glad to know that the Biotene is helping.
I am thinking of you today and hoping that the Keytruda works well and does not make you feel too unwell. Having three chemotherapy drugs all together seems a lot. You will need to take it easy the day after this and drink plenty of water. Hydration is so important.
Try to eat a little even if you do not feel like it. I found avocados easy to eat, especially mashed up or in a smoothie.
By the way, I found avocado oil very useful for massaging the scalp before shampooing. The scalp can get very dry.
Let us know how you get on.
Love and best wishes. Keep safe and rest.
Sylvia xxxx
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Hi all, Sylvia, Gill and Sue
I am finding it tiresome to have to log in every day, and then the log-in process takes me back to the main page and makes me navigate here, again! Still bugs in here, I guess.
I read in one of my recent issues of What Docs Don't Tell You, that excess copper has been found to be a possible contributing factor in developing TNBC. The irritating thing about this little blurb is that it does not explain where excess copper comes from, or how one could get rid of it, so what's the point really? SYLVIA thanks for the book recommendation. Since I"m back from UK I've been reading Mary, Queen of Scots again, while the trip is fresh in my mind. It does give one a new perspective after being in the very places where they lived, loved and died. Well, I was not at the place where Mary died.
SYLVIA and GILL, why were we served peas or mashed peas with every meal while in Scotland?
Oh dear, it's sounding like I'm having a rant day! There is so much to rant about out in the world, other than peas. I actually like peas, we were just curious. I do really like that the full Scottish breakfast includes braised tomatoes and also button mushrooms, an excellent idea as far as I'm concerned.
I am also hoping that Kath and Helen will return and tell us news of Down Under, they have had more stringent Covid shutdowns than most countries, I wonder how they got around. My trip to New Zealand is still pending for December, I wonder if that will happen. I almost don't care anymore, I would rather have my money back and go somewhere easier, whereever that may be. Scotland's Covid precautions were not onerous at all, but Evan went to Italy for a few days before we got there and he said they were much stricter about masking and so forth.
SUE, when I was doing chemo I also had sores in my mouth, my Doc ordered a liquid from the Compounding Pharmacy, it worked wonders, but I don't know what was in it. The Hospital gave me a different mixture that didn't work at all. I tried the Biotene too but didn't have much luck with it. I ate eggs every day when on chemo, scrambled eggs and toast always sounded good, and also yogurt. Other than that, blah. I should have made myself eat more, I did lose quite a bit of muscle, and weight.
I gave myself a Covid test today, it was negative. I hope that's all there is to it, and another hopeful sign is that the friend with the Positive diagnosis is feeling better, and her husband remains negative. GILL, I hope you and Michael are doing well.
Talk later, love, Mary
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Hello Gill,
I have just looked at the details under my posts and I see what you mean by "Other". I could not believe it. Everything has been so messed up. How can technology get it all so wrong?! We have all carefully taken the time to write out the details of our treatment and what drugs we had, so why put chemotherapy in two different places and put "Other"?
The by-line is mixed in with the treatment. The punctuation is atrocious and the whole thing looks a mess.
I still have my photo/avatar with the head cut off!
I cannot see how this is ever going to get sorted out and I cannot understand why some smart-Alec felt the need to change the lovely format that we had!
I went to Active Topics, which used to have long pages of information so that you only needed two or three pages to cover many subjects and now there are about ten short pages so you spend your time clicking and cannot really concentrate on the contents.
I am beginning to feel that it is not worth the effort. We need to concentrate on breast cancer and NOT spend our time trying to deal with the rubbish technology.
Whatever happened to that very wise saying "If ain't broke, don't fix it!".
Thinking of you and wondering where we are going.
I have just read on the news this insulting advice from you know who, about how to deal with the cost of living crisis. "Buy cheap food, wear old clothes and turn of the heat"! How insulting but how typical. I feel so annoyed.
Take care.
Love.
Sylvia xxxx
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Hello Gill,
I have just looked at the details under my posts and I see what you mean by "Other". I could not believe it. Everything has been so messed up. How can technology get it all so wrong?! We have all carefully taken the time to write out the details of our treatment and what drugs we had, so why put chemotherapy in two different places and put "Other"?
The by-line is mixed in with the treatment. The punctuation is atrocious and the whole thing looks a mess.
I still have my photo/avatar with the head cut off!
I cannot see how this is ever going to get sorted out and I cannot understand why some smart-Alec felt the need to change the lovely format that we had!
I went to Active Topics, which used to have long pages of information so that you only needed two or three pages to cover many subjects and now there are about ten short pages so you spend your time clicking and cannot really concentrate on the contents.
I am beginning to feel that it is not worth the effort. We need to concentrate on breast cancer and NOT spend our time trying to deal with the rubbish technology.
Whatever happened to that very wise saying "If ain't broke, don't fix it!".
Thinking of you and wondering where we are going.
I have just read on the news this insulting advice from you know who, about how to deal with the cost of living crisis. "Buy cheap food, wear old clothes and turn of the heat"! How insulting but how typical. I feel so annoyed.
Take care.
Love.
Sylvia xxxx
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Hello Mary,
I am very glad to join you in your rant! I think this mess up with technology is getting to us. I feel exhausted from the frustrations of trying to post. My last post came up TWICE!
I was interested to know that you are still reading What Doctors Don't Tell You. It is no longer available at the shop here that used to stock it and I did not want to take out a subscription. Please keep us up to date with anything you find of interest.
Have you been keeping up with Chris Woollams emails from Cancer Active? I have not done that for a few months. I have had too much to do.
You asked about peas or mashed peas. I think you probably had "mushy peas". They are often served up here, especially with fish and chips. They are not the same as ordinary peas, which are often served up as well. You can buy them in cans here. I shall have a look to see whether they are over-cooked peas or from dried peas. They are salty. They are not something I like that much! Raymond and I eat a lot of mushrooms and cooked tomatoes. If we do a cooked breakfast we have those with eggs of some kind, but we do not eat sausages or bacon. Black sausage is something else that is sometimes served with cooked breakfast, especially in the North, but is not something we like.
The UK has not been strict enough about mask wearing and social distancing and there have been big anti-mask mask movements. It has been much stricter in France. The UK has become a very do what you like country and people seem to have lost their pride. We have found masks discarded on pavements and roads, as well as plastic gloves. People are litter-bugs!
I was glad to read that you got a negative Covid test and let us hope it stays that way.
That is all for today. Let us hope for better times.
Love and best wishes.
Sylvia xxxx
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Hello Mary,
Here is a link to mushy peas.
https://en.wikipedia.org/wiki/Mushy_peas
Enjoy!
Love
Sylvia xxxx
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Hello Sylvia, Mary and Sue,
Just a very quick post to let you know that Michael is still testing positive for Covid after 6 days. I've been coughing more this afternoon and have just tested positive too. Inevitable really.
I'm going to read today's posts later this evening and will get back to you all in the next couple of days.
Keep wearing the masks!
Love,
Gill xxx
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Hi Mary, Gill, and Sylvia,
Yesterday was exhausting, but not terrible. My appointment was later than usual so it threw me off a bit.
Unfortunately, my bloodwork showed that my white blood cells are down. My doc says I need a booster day, which is terrifying. Did any you have to receive a booster for low WBCs? I am nervous about it and asked if there was anything else I could do, like diet or something else. But doc insisted that the booster was important. My WBCs have been fine up until now.
The Biotene is helping a lot. I don't have any sores right now. The doc didn't give me the rinse because my sores were mostly on my lips, both internally and externally, but I had no other sores on the inside of my cheeks or other typical places.
Mary, I loved hearing about Scotland. Such interesting things. Though I don't like the cold, I think I'm getting more interested in visiting!
The hard part about having chemo while COVID is still raging is the isolation. I do some zooms, lots of texting and very brief visits with one person at a time keeping 6 feet of distance. The annoying thing was being in the infusion room and having people talking on their phones--no mask. Not only do I not want to hear their private conversations, I don't know to whom they've been exposed. At least they are far from me and there is a barrier.
I also had the trouble with the platform on this site taking me back to the login. But now, I copy my text just in case and can paste it if I lose it. However, I also found that when I hit "Preview" before submit, that doesn't take me back into the login. Maybe it will work for you.
Thank you everyone!
Love, Sue
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Hello Mary,
I have been having a look in my BMA book entitled New Guide to Medicines and Drugs. I have a look at the A-Z of vitamins and minerals quite often. This is some of what I found.
Dietary and other natural sources of copper – most unprocessed foods contain copper. Liver, shellfish, nuts, mushrooms, wholemeal cereals and dried pulses are particularly rich sources. Soft water may dissolve copper from pipes. Eating a diet like this that regularly includes a selection of the foods mentioned, provides sufficient copper. Supplements are rarely necessary and copper deficiency is very rare. The major change is anaemia due to failure of production of red blood cells.
You should not take excessive doses of copper.
I cannot see how copper in the diet could cause any harm. However, if you start taking copper sulphate by mouth in a single dose, it can produce toxic effects.
There is a disease called Wilson's disease, an inherited disorder, where the patient cannot excrete copper and suffers from long-term copper poisoning and gradually develops liver and brain damage. Acute copper poisoning may occur in people who regularly drink home made alcohol distilled through copper tubing!
It is hard to get motivated today. We have howling winds and the threat of heavy rain.
The news does not cheer one up. There seems to be non-stop coverage of Ukraine, followed by promises (dreams?) of getting the UK sufficient in gas and electricity by 2050! What are we supposed to do in the meantime??!! We have a cost of living crisis that will no affect the ruling elite. Covid is mentioned but it is not getting the coverage that I think it should. At least it is out in the open now about clots from the disease and the vaccines. Our Prime Minister is trying to get off the hook for misleading Parliament over party-gate and trying to play the great war minister (not a hope!).
I have taken to watching an hour on GBNews at 8 pm Monday to Thursday with Mark Stein, a Canadian. He is so interesting, deep and witty. I wish they would give him another hour.
That is about all for now.
Love.
Sylvia xxxx
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Hello Sue,
You must be feeling relieved today to have that chemotherapy treatment behind you.
I was sorry to read that your blood work showed that your white cells are down. Apparently this is quite common. Over the years I have read this quite a bit from patients and they seem to be treated with a product called Neulasta (pegfilgrastim) and Neupogen (filgrastim). These boost white blood cells. Filgrastim is a synthetic form of a naturally occurring protein responsible for the manufacture of white blood cells, which fight infection. The drug works by stimulating bone marrow to produce white blood cells. Apparently the common side effect of this drug is bone and muscle pain. It is not for prolonged use.
I am wondering what your doctor means by a booster day. Did he explain carefully what he means by this and what does it involve? Never be afraid to ask questions and take notes if necessary of the answers you are given. Remember it is your body and it is up to you what happens to it. You should ask why it is important. He will probably say it is to boost your white blood cells to stop infection.
Remember that problems can build up as the treatment progresses. That is why you have rest periods in between to try to improve your immune system ready for the next infusion.
I was told that my blood test would have been examined before I started each infusion and that, if there was a problem, the infusion would not proceed.
I remember when I was having my infusions that there were often patients sitting in the ward where I was having blood transfusions to boost their red blood cells.
Going through cancer treatment can be quite lonely. It is useful to have someone with you if you can. It is useful to have someone with you during routine appointments as well to pick up on comments from the doctors that you may miss. My husband, Raymond, came with me for all my appointments. I was told to avoid crowded places, such as busy shops and public transport, and to steer clear of anyone who was unwell.
As for nutrition, I was told not to eat salad or other raw foods, and especially seafood, for fear of infection.
I was also told not to have any dental treatment during my cancer journey and to get any dental work done before starting treatment. I also had to have a flu vaccination and a pneumonia vaccination, as did Raymond.
I do hope this information will help you. During your treatment do not look back and keep looking forward. You can get through this!
Thinking of you and sending love and best wishes.
Sylvia xxxx
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hi Sue
I had very low white cells after my 1st heavy dose of chemo. My Oncologist tried to give me 3 drugs in a high dose but I ended up in the hospital for 5 days. So after that dose was reduced. Nevertheless, I had the Neupogen after every chemo following. Don't be afraid of it, it helps your body build back the white cells. I had no side effects from it.
I'm sorry about your isolation during treatments, I also always had a friend with me, and a cousin who worked there would always stop by. Darn Covid, so sick of it!
I have to go out now, I'm doing some minor remodeling, but it's not something I enjoy. Too many decisions!
Be back later, love, Mary
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Hi Sylvia and Mary,
After my infusion this week (which included Keytruda), I've had some fairly normal days. Not great, but manageable. The drug I got for my low white blood cells was Filgrastim. I've not had any issues with it. I hope it's working.
Prior to being diagnosed, I did not take any medicine. My entire life has been med-limited and I've been healthy--or as healthy as you can be while teaching little children for 30 years. When we get meds in the US, they are accompanied by the 7 or 8 page fact sheets. Do they give you those in the UK? They're terrifying because they list every possible complication and side effect that you can have.
Luckily, I've not had any side effects. I've been drinking lots of water and trying to eat things that don't make me feel sick. I had a difficult time sleeping, but it's hard to tell which drug could be causing that.
My husband comes into the end of my infusions. He's vaccinated, so they allow him in. I have a hard time making him sit there with me for hours. He's very active and he does so much for me, I've felt like he could use some time to do things that he needs to get done. I sleep during part of my infusion (pre-meds make me drowsy) and I read, write, and listen to music, podcasts, or books.
What really bothers me is the isolation during the rest of the week. It was hard to give up a very active life and job. It's like the lock down of 2020 all over again. I do get out for drives and walks (when I can). But I mask and keep 6 feet away from people. I really miss the class I was teaching--I only got through the first half of the school year with them when I had to leave.
Sorry for the rant. I know I have to concentrate on getting well and healthy again. Making that happen is more than a physical proposition. I am zooming with a friend today who is 3 years out from her diagnosis and doing well. We're secretly hoping that my son gets some motivation and proposes soon to her daughter.
Enjoy your weekend! And thank you for supporting me through this. It means a lot.
Love, Sue
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