Calling all triple negative breast cancer patients in the UK
Comments
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Hi Gill,
I agree about the 'bravery' thing. It's up there with the fighting and battling on the scale of irritating.
Having a leisurely day. Shampooed my hair, which doesn't take long! And it's dry in about five minutes. My Santa hat will fit better this year.
Now I'm going to write my Christmas cards. It's crept up on my this year.
Hope the weather stays good in Norfolk for my visit at Christmas. Don't do anything to disturb it -- no rain dances.
Susie
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Hi, Sylvia
I am not doing the actual hard work of ripping the old wall materials off and repairing where necessary, I am doing the hard work of looking at all the dust that ensued which is on everything in the entire house. I have not had anything like this done before, and didn't realize that removing the walls of one room and a bathroom in an old house could create so much dust. I had an idea, and went to the house a bit ago and started wiping off the small items and putting them in garbage bags and tying tightly to protect from more dust. But just doing that for less than an hour and I had dust in my eyes, my nose and on my lips. I left and now have a headache, so next time I will take my mask and goggles along; it is a pretty good set and allows you to breathe while wearing it. I think it will work. After being there today without it I remembered I do have a dust allergy, among other things, and I take a shot every week to build up immunity to it. Don't think I'm immune yet.
I live in a run-of-the-mill size brick house, and the farm and house are 9 miles away, with 3 miles of that being a gravel road. It is rather remote. Yes, farmhouse is also furnished. There was water damage to the above-mentioned rooms a whle ago, but with us both being sick we just didn't get around to getting it fixed and it had become quite evident so I am going ahead with fixing it now
The CBD oil is legal here, and sold in a lot of places, and one does not get high from it. Marijuana is not legal here, but my state does now allow medical marijuana including the high. I have CBD oil, but I can't say whether it's good or not, because I don't take it regularly. And yes, it is expensive and there is so much available I'm sure some of it is a rip-off. The brand I have is CVHemp Extract, but I don't know whether to recommend since one doesn't feel anything in particular how to know it is good? But I guess the same could be said for any supplement.
If it really worked to cure and avoid TNBC that would be so great!
My knee is a problem when I am busy and active. If I never did anything but lie about it would not be too bad, but I cannot live like that. Last week I had busy days, and the pain was very sharp. Then I took it easy for a couple of days and the pain was much less, but I do have things to do.
I am sorry about the loss of two of your residents, it does make us think about the fact that we are all just here for a while. That's why I have been traveling and like to push myself a bit, having the TNBC made me very aware of the value of not sitting back and let the opportunity to enjoy this world pass by. I am also aware I should avoid too much stress, and this is a bad time of year for that. I probably do overdo sometimes, but try to avoid doing it on a regular basis.
I hope I did subcribe to WDDTY, and am not just imagining it!
I think I've gone on long enough, talk soon,
Love, Mary
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Gill and Susie,
I also don't like being called "brave" or a even a "saint" for just trying to deal with the TNBC thrust upon us. I mean, what is the option?
Gill,
I am so glad the PICC line is working for you, the line my husband had was easy to take care of, and didn't bother him a bit. I hope for the best too, when you have your next chest scan.
Tell Michael he takes excellent pictures.
My singing voice has gone downhill, but our church and choir is very small so I am a big fish in a very small pool.
The dust is a beast!
Susie,
Glad you are enjoying your short hair, I really liked mine when it first came back. It was silvery and curly and flattering, it is different now, back to normal I guess.
You are very "brave" for writing Christmas cards, I have adopted the method of defensive card writing; when I get one, I quickly send one back.
Talk again soon, love,
Mary
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Hello, Mary,
Yes, I know what you mean about the Christmas cards. There are some people I haven't seen for literally years so I don't send them a card, and then they send me one so I have to dash out and get one off to them. Still, it's quite nice to have a display of cards on the mantelpiece, though I take them down on January 1st.
My hair's still very short, too short to go out without covering. Maybe in the New Year.
Susie
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Hello Sylvia,
I was saddened to hear that two residents from your complex had died. It must be difficult and yes, reminders of our own mortality are never welcome.
Thank you again for your support. We are a small group here at the moment, but do all look after each other so well, from the enormity of diagnosis to what some might deem to be trivial in the great scheme of things. I guess we all understand the reality of cancer and treatment without the need to make banal comments - I know that people mean well.
The thread will probably pick up after the Christmas rush. I'm always a bit last minute about Christmas and really dislike the hype and panic. Christmas dinner is just a roast with crackers and a few extras. Our Christmas tree has to be put up at the last minute as our two cats are demolition experts, the fairy on the top is a much sought after prize.
Weather here is still bright and sunny. Hope the gales in Exmouth have died down. We used to live in Ivybridge, on the edge of Dartmoor and I can still recall how quickly the weather can change in that part of the UK. More extremes to cope with too.
Take good care of yourself and Raymond.
Love,
Gill X
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Hi Susie,
So, who told you about the rain dances?
Freedom from hairwashing and blowdrying has definitely been a turning point for me. I've always had shoulder length hair, but I doubt if I'll bother to grow it that long again - just too high maintenance. Like you though, I'm looking forward to seeing it grow back to a reasonable covering. Much as I love my wig, it's going to be hot in the Summer. Would you believe it, while all other hair has long gone, I actually found two really sturdy hairs on my face yesterday, one on the chin, the other on the upper lip - Why?
Gill X
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Hi Mary,
Looks like you'll be the star of the show in the Midnight Mass choir. Better stay well away from the dust.
The PICC line is so worthwhile. No idea why we have to have it flushed at the hospital here. Used to have distict nurses to do that sort of thing. Our hospital told me that local nurses aren't trained to do the flushing any more. Sure I could manage myself.
Love the idea of defensive Christmas card writing. I have a great pile waiting to be written. One year I cut my list down to the people I actually saw something of during the year. Oh the guilt as cards fell through the letterbox from those newly struck off the list.
Hope the knee injection works.
Love,
Gill X
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Hello Gill and Mary,
Thank you for your latest posts. I have to go into town soon, so I shall answer later today.
Hello viewfinder,
Thank you for your PM. I just wanted to say that you are quite welcome to post here on behalf of your sister. We have had and have other people posting for their mothers or their sisters. I would be very interested to know what chemo regime she is offered to see if they are adding any new regimes to the groups they already have.
Keep well yourself.
Best wishes.
Sylvia xxxx
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Sylvia - I don't know her chemo regime yet. I will post it when I find out. She is having her second surgery next week.
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Hi all,
The appointment for my first 'anniversary' mammogram came through this morning, on January 29th, 50 weeks after surgery.
Susie
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Hello Viewfinder,
I'm sure your sister will find it useful to have an advocate. It's a very supportive group here, sharing information and concerns does make life a little easier sometimes.
Take care,
Gill
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Hi Susie,
It's an anniversary that gives us pause for thought and I guess none of us here will ever again attend a mammogram without being anxious, but it'll be another milestone out of the way. You've got a whole Norfolk Christmas to eat your way through first.
Gill X
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Hello Viewfinder,
It's great that you want to be a support to your sister. Why don't you tell us a little more about her?
I finished my treatment six weeks ago and am now No Evidence of Disease. I hope that your sister will be in the same position in a year's time.
Susie
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Hey Susie
I wrote my first Christmas card today and mailed, it was in response to my aunt's card to me, although I had every intention of sending her one anyway. She is a 93 year-old nun who is retired and seems to really be enjoying her life now. She lives in a retirement community with many other nuns and also secular, and is active in the community life, she has just always been such an admirable person.
For sure in the New Year your hair will be long enough to go without covering, hurrah. The first time I went out without a wig to an event, my husband said "Are you really going out like that?" I got compliments, or maybe it was sympathy, not sure. I was just tired of wig.
I just noticed that you and I have the same month and day of diagnosis, I received diagnosis on February 1, 2014.
Love, Mary
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HI, Gill
I doubt I will be the star of Midnight Mass, I have a long day of family get-together before midnight , so I will get very little rest before. The good news is we practiced our two difficult songs last night, and they are much better than last week, it's all coming together, funny how that works. Now we will just have to deal with the people that come up to "help" sing who haven't been to a single practice.
As to the knee injection, what is happening now is what often happens. Since it's scheduled for 2 days from now, of course now the knee hasn't given me much trouble the last couple of days, so I'm having second thoughts. But then I realize that if I don't have it, it will probably kick up immediately after, arghhh.
I hate those long, white facial hairs; sometimes they are so long it's embarrassing to wonder how long they have been there. The bright side of this issue is I have no underarm hair anymore.
Will you or Susie describe a Norfolk Christmas??
Talk soon, love, Mary
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Hello, Mary,
I didn't realise that nuns retired, though one of my aunts quit. Having signed up at 16 and taught in India for about 15 years, she felt that she's lost her vocation, returned to Ireland, got married and had a number of kids. Bit of a mid-life career change!
Susie
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Hi Mary,
Here in South Norfolk Christmas day is so quiet, hardly a car on the roads and people in the village really do stay at home watching old films, the Queen's speech and, well, eating. Absolutely love the silence of the countryside. Nowdays, Christmas dinner to most of us is really just a turkey (Norfolk black), duck or goose roast, with extras like pigs in blankets, stuffing, crispy bacon rolls and so on. Followed by Christmas pudding. Not a patch on your magnificent Thanksgiving feasts, but plenty to eat. Too much in most cases. I think Susie is off to Cromer on the North Norfolk coast so, a brisk walk along the seafront should sort that out.
Michael, is now off down memory lane. His North Norfolk Grandmother had six children and a very tiny lean-to kitchen, but managed to produce a roast bird, or birds, (Norfolk fields have a plentiful supply of pheasants and partridge) boiled hams, homemade sausages and raised game pies. Christmas lasted much longer then and as it often snowed, the food had to last.
Having the knee injections seems like a good idea. Don't let the knees fool you - they're devious little blighters.
Michael has wandered off topic now and is waxing lyrical about Grandma's apple pies, dumplings, steak and kidney puddings, jams, chutneys...... Apparently I make a better Yorkshire pudding though.
Must make an effort with the Christmas cards this afternoon. The guilt is building up.
Love,
Gill X
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Hi Mary,
Here in South Norfolk Christmas day is so quiet, hardly a car on the roads and people in the village really do stay at home watching old films, the Queen's speech and, well, eating. Absolutely love the silence of the countryside. Nowdays, Christmas dinner to most of us is really just a turkey (Norfolk black), duck or goose roast, with extras like pigs in blankets, stuffing, crispy bacon rolls and so on.Followed by Christmas pudding. Not a patch on your magnificent Thanksgiving feasts, but plenty to eat. Too much in most cases. I think Susie is off to Cromer on the North Norfolk coast so a brisk walk along the seafront should sort that out.
Michael, is now off down memory lane. His North Norfolk Grandmother had six children and a very tiny lean-to kitchen, but managed to produce a roast bird, or birds, (Norfolk fields have a plentiful supply of pheasants and partridge) boiled hams, homemade sausages and raised game pies. Christmas lasted much longer then and as it often snowed, the food had to last.
Having the knee injections seems like a good idea. Don't let the knees fool you - they're devious little blighters.
Michael has wandered off topic now and is waxing lyrical about Grandma's apple pies, dumplings, steak and kidney puddings, jams, chutneys...... Apparently I make a better Yorkshire pudding though.
Must make an effort with the Christmas cards this afternoon. The guilt is building up.
Love,
Gill X
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Hello Gill,
Thank you for your latest post. I can see that you and others are getting busy for Christmas and I do hope you have a lovely time.
I do not follow Christmas much as I do not like the commercialisation of it all and the overeating when we have children in poverty in this country and people living on the streets or in shelter. we keep saying we are a rich country, but the wealth does not trickle down.
I am not religious, either, and this is a religious festival but for a lot of people that is all forgotten.
It is still gloomy in Exmouth and i was looking forward to a quiet day and sending a few Seasons Greetings cards. I was sitting quietly at the desk with Raymond when there was a noisy crashing sound on the main driveway. I saw that two cars had had a mishap and had knocked a heavy concrete ball off its pillar and it went speeding off down the driveway and on to the road. Raymond had to go off to rescue it. It could have caused a nasty accident. All that rather upset the morning.
That is all for now.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your post. I do hope that CBD does turn out to be a really helpful product for chronic diseases, especially cancer and especially breast cancer. It is legal here.
I was sorry to read that you have problems with pain in your knee. I know that lots of people have these injections but they do not last very long. I cannot remember whether you have had knee replacement surgery.
I am sure you will enjoy WDDTY.
We are in absolute chaos in this country. The government has well and truly messed up Brexit and the two main parties are in disarray. There is a no-confidence vote against Theresa May this evening but it looks as though she will survive it. The deal she has brought back from the EU pleases neither the Remainers nor the Brexiteers.
I have just received my next issue of Lymphline magazine. I have not found it all that useful so I shall not be renewing my subscription.
It is just after 2 pm here but it is so dark it looks and feels like evening.
That is all for now.
Love.
Sylvia xxxx
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Hello viewfinder,
I was so pleased that you decided to post on the thread. I would like to give a warm welcome to a new American lady. We have had so many of you go through the thread and their posts are always interesting. Mary is an American who has been with us quite some time and I consider her a great helper. We also have Val and Monica but we have not heard from them in a while.
I do hope all goes well with sister's second surgery next week. I know that in this country when patients have a lumpectomy and there are not clear margins or anything else, they often do a second one. This happened to a friend of mine. If they are still not satisfied they often recommend a mastectomy.
I do hope your sister will get her chemotherapy regime in the not too distant future.
I hope you will stay with us and we shall do our very best to support you and your sister.
Love.
Sylvia xxxx
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Hello Sylvia,
Please don't think of responding to this. You sound as though you could do with a peaceful evening. Well done to Raymond, I dread to think what could have happened had he not intervened.
Michael and I celebrate Christmas as a religious festival. I couldn't agree more about the greed. Over half the world starving, unable to access safe water or medicine. The victims of war and refugees are at the forefront of my conscience this year. What a gulf there is between the thinking of ordinary people and those elected to represent us.
Several friends spend Christmas volunteering with the homeless and lonely over the holiday., providing Christmas Dinner, other hot meals, warm clothing and friendship. They wouldn't want to be anywhere else. Not really enough though, is it? Hope to join them next year.
I'm not ready for Christmas. Cards still unsent. Like you, I'd intended to write them this afternoon. Chritmas cake not yet made and no tree. Can't even think about Christmas food.
Weather here cold but sunny and bright. Wish I could persuade it to move towards your neck of the woods.
Wishing you and Raymond a more restful day tomorrow.
Love,
Gill X
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Dear sylvia and others,
Thank you so much for the warm welcome. Somehow I missed the UK in the topic headline.
Yes, I am American with a Scandinavian heritage. My mother was born in the US but could not speak English until she went to public school. My grandparents were from Sweden and Finland but both spoke Swedish, not Finnish. My husband of 47 years, who died six years ago, was from Finland. For many people in Finland, their native language is Swedish.
I've never been to the UK but to Ireland three times...does that count for anything? Lol!
My sister's second surgery is on Dec. 28th, then a month later she will have chemo followed by radiation. She still works actively and has been so busy. She promised to send me her schedule several times, number of treatments, etc. but is caught up in all her work. Going from memory, she told me that she needs four chemo treatments. I don't know anything about chemo but that number, assuming she's correct, doesn't sound too bad.
My sister, of course, is upset about this intrusion into her life but seems to be taking it more in her stride than I was initially able....a benefit of being very busy vs. someone like me who is fully retired.
As soon as I hear more, I'll post an update.
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Hi, Sylvia
I find the whole subject of marijuana, CBD oil, medical marijuana and recreational marijuana rather confusing. The CBD oil I have is actually made from hemp, I think. It does not contain THC, which is the substance in marijuana that provides the "high". My state passed a law legalizing medical marijuana, but not recreational. I don't know how the medicall marijuana is dispensed, and I suppose there have to be a whole lot of other laws governing the growing of marijuana, which before this has been illegal here. Or maybe it's imported from another state. Federally, as the United States, the use of marijuana is not legal, and I was taught that the federal law trumps the state law. But I think we now have at least a dozen states that have legalized the use and possession of marijuana. I would say double that number have signed on to medical marijuana. If it gets state approval, at least maybe we can find out what good it does for people, when it wasn't legal it's all anecdotal.
I have not had knee surgery, my knee is not yet a candidate for that. Knee surgery is done when all the cartilage is gone, or almost gone, from between joints. My knee has torn ACL, torn meniscus, and arthritis and I have chronic tendinopathy, but the arthritis is not bad enough yet. Sometimes for someone in my situation they will do arthroscopic surgery, mend the tears and scrape out some of the calcifications. But they say the results have a 50/50 chance of being a success, and it could cause more problems. So I guess I will get the shots, or else just lay in the recliner, haha. As you know, I like to be active, so whatever works. My knees did not bother me much until I decided to get a personal trainer for some sessions almost 2 years ago. I told him all my problems, but he pushed me a bit faster than I was ready to go, and I ended up one day after a new exercise with very painful knees. I never went back, and I wish I had never tried the trainer.
It sounds as if Theresa May is in a bad place, she has made nobody happy. Somehow she has won a vote of confidence however, And I saw she had pledged to leave after a year, but then someone else said that was just to curry favor. I find UK politics a bit confusing. I read an article that stated Tories mainly wanted Brexit, but many of them changed their minds since. And it stated that Labour party wanted to stay with EU, but many of them changed later also. I suppose that's why things are split so badly, and Theresa is floundering, since she has also had different views on the whole subject. I do wonder how all this will play out.
I will talk to you soon, love,
Mary
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Hello, viewfinder
Welcome, and I see you are also American like me. I found this group a few years ago and have been here ever since. And I have met so many people here. As the name of the thread implies, there are many Brits, but really people from places all over the world have been here.
It sounds as if your sister is less worried than you, but as things go on, she will really need your support. And she may be the kind of person who doubles down on being busy rather than think about unpleasant things. Whatever it is, I am sorry you both are in this situation, and I wish you all the best. And we will be here if you need to talk about things. So you will have Christmas and then she will have surgery on the 28th, and you say it's the second surgery. May I ask what was the first surgery? And then she is on to chemo and radiation.
We will be waiting for update, take care.
Mary
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Hello Gill, Mary and viewfinder,
Thank you for three most interesting posts, which I shall, once again, answer later on.
To everyone, it is useful to read all of the posts, even if they are addressed to a particular person on the thread. That way you keep up with all the information.
Best wishes to everyone.
Sylvia xxxx
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Hi, Gill
Well, your Christmas meal sounds like quite a feast, do you feel up to cooking all that, or hopefully someone will do that for you.
I was a precocious reader when a child, and read "David Copperfield" quite early. I was fascinated by the descriptions of the food, my experience with pudding was of the creamy milk, eggs, sugar and vanilla type and I couldn't figure how that was set on fire. I did have beef and Yorkshire pudding when I was older, I had a broader view of puddings by then but still have never had Christmas pudding. Or a steak or kidney pie, for that matter. I will have Christmas parties with my marriage family, my birth family, and a friend's family. At one we have different kinds of pizza, made by my brother and I as everyone stands around hungry. At another we have ham, turkey, german potato salad, shrimps, venison sausage, and a large assortment of cheesy snack food. At the last one there is always a kitchen full of food of all kinds, since everyone brings a dish and adds it on. While these meals are tasty, none of them are particularly grand, our artist Norman Rockwell is probably responsible for the vision of everyone sitting around a table with a huge whole turkey with all the trimmings on it. Michael's Grandmother's meals sound like a feast to me! And probably cooked over a wood stove.
So I guess I am off to the doc for a knee injection today, hope it's a good one.
Take it easy with the Christmas cards, you have a great excuse this year to go easy on that sort of thing, and other things you don't feel like doing.
Later, love, Mary
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Yet another sunrise.
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Hello Mary,
As far as CBD oil is concerned, it is made from hemp. I have seen it in three different shops here and is in a small bottle, very small, with a big price and I can only think that you take just drops of it.
I did not know that surgery is only done when all the cartilage has gone. It seems to be very common here and lots of people seem to have had knee replacement, not to mention hip replacement and some have had replacement of a replacement, which apparently is very complicated surgery.
I think people here are fed up to the teeth with talk of Brexit. Two and a half years after the referendum nothing seems to have been solved and I think the country is a laughing stock in the rest of the world. Theresa May is for ever changing her mind and breaking her promises. If she had any dignity she would have resigned by now. She is very good at doing 'fake' sincerity. Nothing else is being given any priority and nothing is going right in this country. Things such as the NHS, education, housing, police, social care and transportation are all sinking due to cuts and neglect and the government drones on.
I am not surprised that you find UK politics confusing. As for Brexit, one of the main problems is that most of the Parliament are in favour of staying in the EU but most of their constituents want to leave. I personally think that those MPs who are going against their constituents' votes should be deselected. Both of the main parties are split, so we really have two parties within the Conservatives and two within Labour. We really need fresh new parties.
Have you been reading the latest emails from Chris Woollams? I did read one of them but another one has arrived that I have not looked at. I do find that there is a lot of repetition in them now.
That is about all for now. Take care.
Love.
Sylvia xxxx
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Hello viewfinder,
It was nice to hear from you and really this thread is for anybody in any country and has been from the beginning. I started it in 2010 for UK patients with breast cancer with TNBC receptors because I thought we were in the dark ages over here, but from the very beginning patients from other countries started to post and it was very useful and enriching. At the moment we have posters from the US, Canada, Australia, and the UK, but we have had posters from South America, South Africa, Iran, France, Germany, Philippines, Singapore, Ireland, and so forth. I do hope we shall hear from some of them, especially to let us know there anniversaries from diagnosis.
I was very interested to read about your Scandinavian heritage and the fact that your husband was from Finland, but spoke Swedish, not Finnish.
I was very sorry to read that your husband of 47 years died six years ago. That must have been a difficult time for you. Do you have any children?
I do not know a lot about Sweden but I did go touring there many years ago back in the 1970s and I thought it was very beautiful. At that time I also went to Holland, Norway and Denmark and was very impressed everywhere I went. I do not think we have had any posters from these countries.
I was very interested to know that you had been to Ireland three times. That is also a very beautiful country.
We shall be thinking of your sister's second surgery on December 28th and thena month later when she starts chemotherapy and later radiotherapy.
It is probably very good that she is busy working, as it will keep her mind occupied.
With chemotherapy her oncologist will choose the drug regimen that she thinks is best for her as well as the number of infusions and the time between the infusions.
It is good to know that your sister is taking everything in her stride. Does she do very demanding work?
That is about all for today. Take care.
Love.
Sylvia xxxx
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