Calling all triple negative breast cancer patients in the UK
Comments
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Hello Mary,
Thank you for your PM and your very kind words.
I am sure that it must have been very difficult for you losing your husband like that and having to carry on and get through your breast cancer treatment. I am so glad to know that the thread has helped you and it is good that you have made friends here.
I do admire you for staying with the thread and being such a good a good support to me and all those that have been going through the thread since you joined.
I do hope that Brexit will come to an end on March 29th and that the politicians will deliver on the democratic result of the referendum. I do hope that Brexit will not be delayed by prolonging Article 50. There is no point because nothing will change and Theresa May is just delaying everything. I certainly hope that we do not have a second referendum and I cannot see that this can be done without delivering first of all on the first referendum. We never should have had a Remain Prime Minister in charge of delivering the Leave referendum. If anything should happen, it should be a General Election and then get on with the real issues such as the National Health, Education, Social Welfare, Housing etc.
Russia gets blamed for everything these days. We in this country should remember what an effort they put into World War 2 and the 26 million Russians that died.
As for Donald Trump, he is trying to do what he promised his voters and common sense tells you that you cannot just let anybody walk into your country.
That is about all for now. It is quite mild here, about 12C but overcast, dreary and damp.
Love.
Sylvia xxxx
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Hello Marias,
It was good to hear from you. I was glad to know that you are spending some time with your aunt. Thank you for the photographs. It all looks very peaceful in the photographs.
I am not sure if I have understood correctly what you have written about your aunt, but I think you are saying that she had breast cancer in the past and I know that it must have been hormonal because of the drugs she was on. is it your aunt, aged 72, who now has colon cancer? If so I do hope she will be alright.
What is happening with you? I can understand that you have mood changes, because you have been through a lot and I can understand that you can feel afraid.
I do hope that all will be fine with your problems with the thyroid. What are they going to do to cure all this?
You mentioned your parathyroids and said that you had had a scan. Did you have the proper Sestamibi scan that shows up any non-malignant adenomas that can grow on the four little parathyroid glands? I do hope you have had this scan and that it has shown all is fine with the parathyroid glands.
Keep happy and keep full of hope.
Love.
Sylvia xxxx
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Hola Marias
Fue bueno saber de usted. Me alegró saber que pasas un tiempo con tu tía. Gracias por las fotografías. Todo se ve muy tranquilo en las fotografías.
No estoy segura de haber entendido correctamente lo que ha escrito sobre su tía, pero creo que está diciendo que ella tuvo cáncer de mama en el pasado y sé que debe haber sido hormonal debido a los medicamentos que tomaba. ¿Es tu tía, de 72 años, quien tiene cáncer de colon? Si es así espero que ella esté bien.
¿Qué está pasando contigo? Puedo entender que tiene cambios de humor, porque ha pasado por muchas cosas y puedo entender que puede sentir miedo.
Espero que todo esté bien con sus problemas con la tiroides. ¿Qué van a hacer para curar todo esto?
Mencionó sus paratiroides y dijo que había tenido una exploración. ¿Tuvo la exploración adecuada de Sestamibi que muestra algún adenoma no maligno que pueda crecer en las cuatro glándulas paratiroides pequeñas? Espero que haya tenido esta exploración y que se haya demostrado que todo está bien con las glándulas paratiroides.
Mantente feliz y llena de esperanza.
Amor.
Sylvia xxxx
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Quadractomy was a new one on me but I see from Googling that it is a thing!
Susie
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Hello Sylvie, Mary and all oficina hoy.
The bird name is Mirla
I put me Sestamibi Tc99m when the gamagrafia was Taken.
My aunt is with Colón cáncer Now. Waiting for the surgery.
Online monday i Will have a colonoscopia and endoscopia.
I hope every body is better
Abrazos
Marias
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hi what a pity the amount of errors. This phone writes what you want .. by the autocorrector that is in Spanish ..
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Love all the photos! I made a collage of some I took years ago when we lived in south Florida. Some were taken at the beach, others in the Florida scrub. The first and third in the bottom row are the same flower (Florida dayflower), taken at different times.
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I would think that a Mirla is a blackbird (merle in French) but he doens't look quite like our blackbirds here.
Susie
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Hi Sylvia
So sorry to hear that you have been very much under the weather - my warmest thoughts are with you as you continue to pursue an improvement in your health and also for your husband. I fully agree with the others in understanding how much time, effort and energy you have devoted to all of us over the past years - and you have my full support in whatever decision you make in your contributions to this thread, Naturally we will all miss your constant encouragement and your wealth of information - but your health has to get priority.
We are safely home now after a harrowing experience on our trip to Mexico last week - my husband almost drowned in the ocean, and thankfully he was spotted by a young Mexican man on the beach who rescued him from the rogue wave which slammed him head first into the ocean bed. The ambulance came to the beach and took us to the hospital where he was admitted for a head injury because when they got him out of the water, he was unable to use his arms or his legs. The whole experience was very stressful especially with the communication since we do not speak Spanish and the place we visit in Mexico is a small fishing town where one does not hear a lot of English spoken. He was well cared for at the hospital where they had every test imagineable done on him including administering a host of drugs as a preventative to swelling inside the brain. The hospitals there are not high-tech my any means. But we were so grateful to get the medical attention he needed.
We were given the go ahead to fly back home - his legs are working now, but his arms not so well especially the left one. So I now find myself very much in the caregiving role - he needs help to dress, he cannot drive, so I have had to take him to the doctor and the lab for further tests. It is certainly a stressor that I do not need in my life, but it is what it is. The brain scan came back normal and there was no bleeding at that time - the other thing which we found out is that his blood pressure is very high - so they put him on medication to bring it down. He is in a lot of pain and is very fragile physically, but also emotionally and psychologically.
I will miss your presence here Sylvia, but my desire for you is to find contentment and fulfillment in your life whether it be on this thread or finding a new passion in your life - whatever brings you joy. Hope your cough continues to improve and please look after yourself.
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good to see you well enough to be back Sylvia
Lots of love and best wishes to all
Helen X
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My friend Judith, who completed treatment for cervical cancer just before Christmas, was quoted over £1000 for travel insurance for a week in the Canaries. I put her on to www.insurancewith.com which specialises in post-cancer insurance and she's been quoted a more reasonable £165, which is still too much, IMO.
Anyone know how long this nonsense continues after you're cancer free?
Susie
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Hi, Susie
I assume you are talking about travel health insurance re your friend? I don't know anything about it, I never tried to get it. I only had the trip insurance insuring the travel would go smoothly. I had no idea there is an extra charge for being post-cancer.
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HI, Adagio
It is a very shocking accident that happened to your husband. As you say, it is a place you are famliar with, and he has probably gone swimming there many times before. I'm glad he is slowly improving, please let us know if he has further testing. It does sound very similar to an accident my brother had last September (falling on his face and causing a spinal cord injury), and he is now almost completely returned to normal. He also went through the gamut of emotions: from relief at being alive, then was depressed at being unable to do much, and because of the pain and weakness. Rehab and/or physical therapy seemed to help my brother.
Take care of yourself, too.
Love, Mary
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Hi, Sylvia
Thank you for kind words, I have received more than I have given here, I'm sure. This place was a lifeline when I was first diagnosed, I learned more about TNBC and its' treatment here than anywhere else.
I don't know either what will ever happen with Brexit. How long has it been now since the Brexit vote? I think it is a case of kicking the can down the road so as not to have to deal with any repercussions. It is the same here with big issues. Such as our National Debt, which grows and grows with every administration. The numbers are so staggering I can't wrap my head around it, so I don't try.
You are right about Russia, it is amazing the number of Russians who died during WWII and also after the war from starvation. Some of the suspicions about Russia are because of the secretive nature of their government, they are definitely non-transparent! This makes them an easy scapegoat for all sorts of things. Some things are probably true, but probably not all.
I also agree with you about President Trump, he promised to make the borders more secure, and is trying to do so. So far we are backsliding in that area because he can get no cooperation from Congress. Instead we are expected to spend even more in making illegal entry as easy as possible, it's really odd because people who are trying to enter legally are not having anything made easier. That makes my head hurt too.
I got my latest issue of What Docs Don't Tell You, the cover got my attention. It has an image of white dinner plates with a fork and knife, and a big pink ribbon on the top plate. Above are the large words, "The food that reduces your breast cancer risk by 64%". I went to that article immediately and found they were referring to..........mushrooms! Also broccolit and cauliflower and other cruciferous vegetables. I do like that this article explains why these foods are valuable in a good diet. I don't like the article for the simple fact that I for one, and probably most people here, have always liked mushrooms, and some forms of cruciferous vegetables, and ate them frequently. This article seems to say "Oh, but you didn't eat enough!" So it's my fault. I would be interested to know what you think.
It's overcast here too, still snow on the ground, and it's cold. But the days are getting much longer!
Talk to you later, love
Mary
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Hello Marias,
Thank you for your post. I do hope that you and your aunt will make good progress.
Have you tried composing your posts in Spanish and then putting them into Google to translate into English.
I have done this from time to time when I write to you. I write the post in English and then put it into Google to translate into Spanish. Although my spoken Spanish is now pretty rusty I can read Spanish fluently, so I read the Spanish aloud and check the sentences to see if there are any errors. I find the translations are excellent.
Keep with us. What do you think of the situation in Venezuela?
Thinking of you.
Abrazos.
Sylvia xxxx
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Hello adagio,
Thank you for your very kind words and I do appreciate the fact that you have stayed with us long term. I shall never completely abandon the thread, as I have put too much into it and I shall always keep an interest in it. I just need to give myself some more free time.
These past three weeks have been quite difficult with Raymond and me both fighting a nasty bug. This week is the beginning of a more 'normal' week.
I was so sorry to read about your husband. The whole incident sounds very frightening. I do hope he will make a full recovery.
Sometime ago I did write a long post to you about osteoporosis and bisphosphonates. I do not know if you managed to read it.
Take care of yourself and keep in touch with us.
Love.
Sylvia xxxx
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Hello Helenlouise,
Thank you for your very kind words.
How is everything with you?
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your interesting post. I shall respond later on today.
Love.
Sylvia xxxx
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Hello viewfinder,
Thank you for posting the collection of flowers. They look truly exotic and very beautiful.
Love.
Sylvia xxxx
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Hi Sylvia and everyone on this thread
I have almost completed can my second last round of Xeloda (eight rounds). I now start two weeks off. See my MO and then (all being well) two weeks on two weeks off which will take me to April. Then baseline scans looking for no evidence of disease, which will be the best possible outcome. I am doing fine. Really no problems coping with Xeloda. I am well. Just waiting to complete treatment and the outcome of those scans.
I have decided a celebration is warranted whatever the scans tell. To that end I am holding off on worrying about the tightness and lumpiness in my impacted breast. It feels odd but whenever the doctors examine they say it looks good. As I reply it might look good to you but I don't know what I'm looking at!
So bring on April and the news it will hold!
For those of you that have been where I am in your treatment path I wonder if you felt yet same?
And for all of you reading - I wish you well
Xx.
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Hello Mary,
Thank you for your latest post which, as usual, I read with great interest.
Thank you for all your kind words. I was so glad to know that you have found the thread helpful. it makes it all worthwhile.
I think we have to try to keep looking forward with breast cancer treatment and be on the lookout if there is anything that new which might make a breast cancer diagnosis and the breast cancer journey that less traumatic and easier.
As for Brexit, I really think we are all fed up with it, whether we voted Leave or Remain. The Conservative government under Theresa May have been messing around and delaying. On June 23rd this year it will be three years since we had the referendum and for most of the time nothing has been done. As the deadline for Brexit approaches on March 29th it is anybody's guess whether we shall leave the EU or not. Everyone is so divided. We have those who want to leave come what may. We have others who want the referendum cancelled and for us to stay in the EU. We have others who want another referendum which they are ironically calling a People's Vote. This could go on and on, a neverendum! I think we need another General Election to sort out the mess. The main two parties are split.
I do wonder what is going to happen in the US. I am so afraid that there is too much threatening going on and I would like to see Donald Trump concentrating on the US and domestic policy and not getting involved with other foreign countries. The same goes for our lot here. keep your noses out of other countries' business and clean up the swamp here.
I need to catch up with my reading of What Doctors Don't Tell You. I hope to get to my natural food store tomorrow to see which issues I have missed while feeling unwell. I definitely have not got February 1st edition which is probably the one you have mentioned. I cannot remember whether i had January 1st edition or not.
I shall catch up with you later, as I read these magazines. The information about the cabbage family is nothing new. It was all in the news way back in 2005/6 when I was going through treatment. Broccoli is supposed to be the number one vegetable. Of course, there is no one single cause of breast cancer. It is multi-causal and we shall never know what caused ours. I have my own theories about my own and it involves gum disease, an overactive parathyroid, stress and not having had any children.
It has been a nice calm Spring day today, but Exmouth is overflowing with people as it is the two week period of half term. We tried to park in town today to do some bits of shopping, but gave up as there was nowhere to park. Exmouth has changed so much since we moved here in January 2002.
i am looking forward to watching Keep it Country on television at 10pm, when they have Down Memory Lane, the music of the 50s, 60s and 70s. I find it cheers me up a lot. Can you get this programme?
That is about all for now. Keep well and keep posting.
Love.
Sylvia xxxx
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Hello Helenlouise,
Thank you for bringing us up to date with your treatment. I can understand how you must be looking forward to April.
I was glad to know that you are coping well with your treatment.
What is the latest news from Australia? Do you get much news about the UK?
Thinking of you.
Love.
Sylvia xxxx
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Hello Mary,
I forgot to ask where you are with Chris Woollams and his emails. I think i have probably got behind with them as I have been deleting them while I felt unwell. I do not like emails building up in my inbox. I thought everything was getting a bit repetitive.
Love.
Sylvia xxxx
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Hi Sylvia
Thanks for your reply. We do get news on politics in UK, Europe, the middle eart and lots about USA. I am not much for politics but understand that much turmoil is happening with brexit stages one and two!
Australia (my perspective) is somewhat isolated and focused on internal problems with impacts from climate change, social inequity, managing refugees whilst attemptng to maintain global engagement. I feel very fortunate to be an Australian. I have travelled some (USA and Asia) but hope one day to travel to distant places. Whilst that is not an option I am happy to enjoy our vast country as much as I can. My nearest city is Melbourne (3 hours by road south) next is Sydney (5 hours north). There are many country towns in between but we live in a vast land. I get to both cities reasonably frequently but love living in my counrty town. I was born in Brisbane (12 hours north ). Travelled and lived in several cities with family as a child, then as a young adult and settled in Albury NSW several years after my parents took a sea change and bought a local business. My parents are gone but for my husband and I this is the centre of our world.
I very much appreciate this international group that have made me so welcome. It is interesting and enlightening to hear news from those living in other countries. The breast cancer. Org has been a blessing to me for this recent treatment journey.
Wishing you all good times xxx
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HI, Sylvia
There has been so much going on I did forget about Chris Woollams too, for some reason his emails have been delivered to an inbox I don't check very often. I did check and found 4 that I hadn't seen, 2 from January and 2 from February. So I will check them out when I get to it, not sure what he has come up with.
Thanks for reminding me!
Talk soon, love, Mary
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My sister had her chemo port put in today and called me as her friend drove her home from surgery.
She also had her teach, which she said went very well. They were very thorough. She's happy she made a switch to a different cancer hospital.
So far, so good.
She has her first chemo treatment for four hours tomorrow. I hope and pray all goes well.
Unfortunately, the oncologist told her that she should not go to her show (she's the Executive Director) because her immune system will be compromised. She's very disappointed, of course, but she's has a wonderful staff that will take the reins in her absence. And her Board of Directors is fully behind her.
Last week she sent me a photo with her hair shaved off, which is difficult to get out of my mind and makes me sad.
My greatest admiration to all of you who have had to go through this, or who are still going through this! My heroes!
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hi everyone
Great to see u all so active on the thread. Saw my dr last week and he upped my thyroxine dose and is monitoring. Have had a rough couple of weeks mentally. Mind still in that dark place with the back stiffness I get! Need to stay away from dr google. It is start to get cooler here which is good in some ways as a reprieve from the heat but I hate the thought of winter
Cheers
Kat
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Big moon still about at 530 this morning0 -
Hello Helenlouise,
Thank you for your post. It is always interesting to learn about the countries where other people live. It sounds as though you have a pleasant life in Australia. I can understand about the wide open spaces as I did live for a long time in Canada, which is also a huge country. It was a great contrast to small UK with its overpopulation, which gets worse and worse. I would imagine that Australia has a small population as well.
I think it is the best policy for governments to take care of the needs of their own population and that there goal should be to eliminate poverty and get rid of inequality. I am ashamed of the state of the UK, especially England. Yesterday the statistics on poverty in general and children in particular was appalling, but nothing gets done. We have very rich people dodging taxes and loads of people living homeless on the streets.
Keep well and keep looking forward to the end of your treatment.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your latest post. let me know if there is anything really new in the emails from Chris Woollams.
I did get into town yesterday and I bought the What Doctors Don't Tell You magazines for January and February. The heading on the cover of the January magazine is The ultimate diet to reset your thyroid. Inside it is all about an under active thyroid, Hashimoto's disease.
As fir the February magazine, the title on the cover is Healing (and preventing) dementia. I need to read both in more detail.
Are these the magazines that you have? I would think the March edition would be out soon.
I have been reading in some free magazines that I picked up in a small natural food store in Budleigh Salterton, which is a nice little seaside place, five miles from Exmouth. I found there was a lot in them about CoQ10 (Coenzyme Q10) and how important it is in later life when our natural levels fall and we can experience certain health issues that can be linked to low levels. It is a vitamin-like substance that is hard to get in your diet. I was looking at the supplements but they were so expensive. Are you taking any of these?
There is a lot to write about CoQ10 and I might try to introduce bits.
I am feeling much more myself today and am doing this post before my energy flags.
I see that Hanieh has disappeared again and that we have not heard from Gill. I do hope she is alright.
Love.
Sylvia xxxx
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