Calling all triple negative breast cancer patients in the UK
Comments
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Hello Kath,
Thank you for posting the photographs. They look lovely.
If the pain is taking away your peace of mind, it is probably best to get it checked out, before your appointment with your oncologist in July. Worrying and imagining what it might be will be no good for your immune system.
You will now need to keep your mind busy with other things after all the excitement of planning a wedding.
Sending you fond thoughts.
Sylvia xxxx
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Hello Kathy in the UK,
We have not heard from you in a while, so I was wondering how everything is going with your sister's chemotherapy treatment. I do hope she recovered from not feeling good from side effects and that her weekly Taxol treatment are getting easier to cope with.
I hope you are taking care of yourself as well.
Hello Flo5,
I was wondering, as well, how things were progressing with you. Please keep in touch and let us know how you are.
Fond thoughts.
Sylvia xxxx
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Hello Lou,
I just wanted to say that I hope you have recovered from not being well and that you are feeling fine for your planned holidays. Keep in touch.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I am just posting to say that I read an interesting article in the i paper at the weekend, about how far behind in the UK we are with proton beam therapy for cancer patients. The article is entitled, under Health, 'Our doctors should be handing out air tickets'.
British prostate patients in Prague tell Paul Gallagher why they have saved up thousands for a treatment not available on NHS.
This article also makes you realise just how dreadful prostate cancer treatment can be.
The article explains that proton beam is a different type of radiotherapy which uses a high energy beam of protons rather than high energy X-rays to deliver a dose of radiotherapy for patients with cancer. It works best on some very rare cancers, including tumours affecting the base of skull or spine.
Patients are having to go to Hungary for this treatment!!
Please try to read it. The link is:
https://inews.co.uk/essentials/news/health/proton-therapy-center-prague-prostate-cancer/
I have just received the latest email from Chris Woollams, Cancer Active. I have not yet had time to read it.
Sending best wishes to everyone.
Sylvia
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http://newyorkoncology.com/treatments-programs/can...
Hi Sylvia,
This is a link to the facility and machine that is used for my treatment.It is advanced and is supposed to minimize damage to surrounding tissue.I drive an hour each way every day to get there but I feel it's worth it.
Rhond
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Hi Sylvia and all friends here,
It's good to chat with you again, I have gone over the messages posted since I've been gone; not with a fine-tooth comb but I think I've got the gist of what is going on. I will post later about our normal things, but wanted to say a few things about our trip while it is fresh in my mind.
I had a great time, some of it is just indescribable. We had not been to Europe before, so we had 24 hours to spend in Rome and that was a blur of beauty. We wandered around open-mouthed at all that we saw, and I know that what we saw was a fraction of what is there, and I have vowed to go back. We then boarded the ship there the next day about noon, and sailed later that evening. The next day found us in the port of Livorno, north of Rome. We visited Florence and Pisa, not enough time in Florence, of course; and sailed that night at 6 PM. A funny thing is this: the first night aboard a storm went with us most of the way to Livorno, and the seas were very rough. We were stumbling down corridors and grabbing walls and handrails. My sister-in-law has not cruised before and thought it was normal, and she thought it was funny. I did not tell her it wasn't normal, and we did have fun with it, since neither of us became ill. It was calm seas after that for the most part, and later I told her that it was indeed very rough the first night, she thought it was just the norm! I was glad not to roll out of bed the first night, but we were so tired we slept through it all. We later learned that many people on board were sick for days, glad that did not happen to us.
Our next stop was at the cliffside Italian towns of Positano and Amalfi, we took a launch to Positano and then back to Amalfi, visited churches and wandered through the little streets lined with shops hanging on the hillside. Next to Sicily, where the tour we chose was called "The Land of the Godfather", we were taken around various sites where parts of "The Godfather" movie were filmed. It's one of my all-time favorite movies, so I enjoyed it and Sicily is also so beautiful, more than I ever imagined. We were fortunate, I think, to go when we did in general. It was warm but not hot, with cool breezes. Flowers are everywhere, in brilliant colors. The greenery is brilliant because of the spring rain, everyone said it gets so much hotter and drier in July and August and into September. We could then taxi to Taormina, with all its' history and panoramic views. And everywhere in this Amalfi and Sicilian and Grecian area is the blue, blue ocean, so beautiful.
Our next stop was Zakynthos, Greece. We did not disembark that day, there were only 2 tours offered and we decided to stay aboard ship and take advantage of the spa and relax by the pool. The next day found us in Corfu, Greece. We joined a USA couple we had met and went by private car, and our driver took us around to various sites of interest. Of note was the Achillion palace built by the Empress Elizabeth of Austria after she fell in love with the island, there are statues of Achilles everywhere; it is a summer palace and sits high on a mountaintop overlooking the blue sea, very beautiful with some of the original furnishings still in place. The private trips were very nice because one could wander around as much as desired and not have to stay with the group. Although the group tours were also nice, they were not overly large groups. We also visited a small, old winery where they raised organic grapes and olivesmk and cheese and made "prosciutto" from their own pigs. They fed us a meal of all this, the olives were in a bowl with fresh tomatoes and basil and oil and vinegar, and sopped up with bread. At home I am someone who eats simply, and this was perfect to me.
I will have to continue this later, and I want to add here that this ship was also beautiful, with beautifully appointed rooms and balconies for all, and very good service. The food was fabulous, with four gourmet restaurants and 3 others that were equally good. We would be in a different port every day, so had no chance to get bored, but I am glad we took a day just to soak it all in on board.
I will be back later, hope all are having a good day!
Mary
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Hello Moderators
This is an urgent message to you to explain to me by return what has happened to my profile. From my introductory post, way back on September 12 2010, to the present day, all my wording has been changed and what I am reading makes no sense. What has happened? I stated clearly all my treatment, chemotherapy drugs, radiotherapy etc.
What is all this gobbledygook that follows my own words? I am not happy.
Best wishes.
Sylvia
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Hello Mary and the rest of the group,
Have any of you got an explanation about all of the long lines of incomprehensible stuff that have appeared today on my posts. It seems to go right through from my first post. I am not happy and need to know how to put it back to how it was originally. Is this some kind of hacking?
I hope the moderators see my post and give me an answer. This has really spoilt my day.
Best wishes
Sylvia xxxx
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Hello everyone again,
I have just noticed that this nonsense has also happened to posts from Val, Rhonda and Kathesward. We need to get this sorted out.
Best wishes
Sylvia
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Sylvia,
We apologize for the inconvenience this technically difficulty has caused you. Our tech team has now resolved the issue.
--The Mods
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To Sylvia and all my friends here,
I have not noticed the problem Sylvia speaks of, but I notice the Moderators have posted a reply; oddly it contains a grammatical error which I haven't noticed happening on any of their previous posts. Hopefully it is really them and not an impostor.
I will wait until tomorrow to write more to make sure this is straightened out.
And I am aware that many of you live rather near the places I have been talking about, or have visited them. Thanks for indulging me by allowing me to be excited about my trip, and seeing the places I have heard about all my life.
Talk again later, hope all is well,
Love, Mary
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Hello Moderators,
Thank you for your messages and thank you for resolving the technical problems. It is most appreciated.
Thank you for all you do.
Best wishes
Sylvia
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Hello Rhonda and Mary,
Thank you for your posts.
Rhonda, I shall look up later the link you posted.
Mary, it sounds as though you had an interesting trip. It must feel strange being back home.
I shall post later.
Best wishes.
Sylvia xxxx
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HI Sylvia and all my friends here,
It is strange to be back, I'm sure that won't last. But I realize that something I almost never thought of while away was the word "cancer". Now that I'm home, it's again part of the pattern that is my life, and pops in and out of my mind. Home is a heavy weight sometimes, it is memories of pain and grief, but also of many happy times, and people dear to me.
The morning after leaving Corfu we found ourselves sailing through a beautiful bay, 28 miles of a narrow inlet surrounded by towering mountains, our destination at the end was Kotor, Montenegro; an old walled city. There was a celebration planned on the top deck as we sailed in but it got rained out, I just watched from my balcony in my bathrobe. Here we took a ride up to one of the mountaintops, high above the bay and visited another restaurant hanging on the mountainside where we were fed more crusty bread and the ham that is so prevalent in this area. In Italian it is called prosciutto, here it is called prsut, or something like that. We visited a farm where pigs are raised to make the ham, and wandered through little picture-postcard villages tucked away into little valleys. Just a beautiful place. That evening we had dinner in the walled city, I had a platter of fresh seafood; mussels, shrimps, octopus, fish and something I wasn't sure of but it was good too. My sis-in-law is quite athletic, so she did the "steps" climb. There is a stone staircase of 1660 steps leading on an old tower, and many tourists make the walk to see the view from the top. Pam went with another passenger, I stayed below and was kind to my knee. They went half-way only, her fellow climber got a bit winded. Had a great time, and the next morning found us in the port of Dubrovnik, Croatia. This is another old walled city, with a much bigger wall. There has also been a lot of building going on here, tons of fancy apartment buildings going up near their very attractive seaside areas. Our tour took us into the countryside with a stop at an old mill, where we were showed how they made their clothing in earlier times, and the giant wheels where they ground their grain. These countries of the old Yugoslavia are very clean places, people seem very healthy and there are fresh markets everywhere with produce brought into town daily. Our ship left port early that day, so we didn't go into the walled city. The next day we were in Koper, Slovenia. There we went into the country again and visited the 430-year old stud farm of the famed Lippizaner horses, which were the preference of Emperors back in the day. We were guided around this farm, saw the horses up close and personal (big beautiful babies), and then were treated to an exhibition of their talents. Truly amazing, these horses dance and prance and bow and stand on their hind feet. They are born black, but all are white as adults. Again, the country is spotless, the people are tall and healthy-looking and outdoorsy. They did not give us any ham! I did buy some lemonade, not like ours, theirs is lemon, water, and basil. As the little girl selling it said, "It's healthy". Beautiful place.
And the next day we were in Venice; a lot of tourists although we were told this is nothing to what will be here in July and August into September. We went through the Great Cathedral of St. Mark, and the Doge's Palace, and had a gondola ride. Then the tour went back, and we stayed on and just wandered through the streets, we had no idea where we were but we seemed to go in circles and always ended up back in the Square. We did enough shopping that we finally returned to the ship because we were tired of carrying our bags. The only way to get around the old city is by water, so we had to be careful to get on the right boat.
I didn't mention but everywhere we went we went into old churches, some so beautiful it's hard to believe how old they are. The murals and frescos look very fresh. As does the Doge's Palace with all it's gold and vivid colors.
The next morning it was time to leave the ship, and our long day home started very early. i got up at 3 AM Venice time Tuesday and walked into my house at 1:30 AM Wednesday my time, would have been 8:30 AM in Venice. We did have some airport difficulties.
Overall, I cannot even say how much I enjoyed this trip, and so did my sis-in-law. We saw a lot in the time we had, and realize there is so much more to see and do.
I will now stop with the travelogue, and return to normal, whatever that is.
Hope all are doing well today, and all snafus overcome.
Love, Mary
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Hi Mary,
I loved hearing about your trip.Six years ago I took a trip to Italy with my daughter.It was a 12 day tour-whirlwind.I have always wanted to go to Greece.Italy is amazing-so many beautiful cathedrals and little towns.It sounds like you made many beautiful memories.
Rhond
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Hi, Lou
Hurrah, I am happy for you that you have finished your chemo, that is something to celebrate! I am also so glad that you are looking forward to going on trips, and have 2 planned already. You are doing great, when I finished chemo I felt very bad and it took me quite a while to feel decent again.
I am glad the neuropathy is not bothering you too much. A physical therapy nurse told me that with neuropathy it is important to try not to dwell on it; I think that's true. As you said, during the day when we are busy it's not too noticeable; but when we sit down to relax it becomes much more so. And sometimes when I am walking it feels like little needles going into the feet, but sometimes not. Sometimes my ankles burn, and my legs ache, I have no good answers to it.
Let me know how the eyebrow thing goes, my eyebrows never came back well, and I try to make them up the best I can.
Congratulations! talk to you again soon
Love, Mary
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Hi, Val,
So you have been busy gardening, you make me feel guilty because all my growing things are looking quite shaggy. We have had so much rain, and I have been gone, weeds are everywhere. I have downed trees and a tin roof on an outbuilding was half ripped off a shed by strong winds the other night. My lilacs need pruning, and I think I just want to leave again!!
Yes, I think the neuropathy will be with us, and we have to learn to live with it. My knee is better, I was really happy that while on my trip I was able to keep up with the groups and with my sis-in-law, who is very athletic. We walked for miles every day, I would put ice on my knee every night but it wasn't too bad. I am thinking that the cortisone shot kicked in, because otherwise I am not sure I could have done it.
My MO doesn't do scans either unless I really complain about something. Just the mammo once a year, and last year she also ordered a breast MRI. But only because I told her I didn't have much faith in mammos because it didn't pick up my first lump!
Hope it's not too hot already in NC. We have been pretty warm here, but mostly stormy since I've been back. Wind, hail, rain and tornado warnings with tornados in places!
Talk again soon, love
Mary
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Hi, 4ever strong,
So glad to see that your test came back clear, what a relief! A mystery for sure, I wonder what the enhancement was? But no matter, what's important is that it's gone. And good that your gene tests came back negative.
It's also beneficial that you are getting back to being more active, I have noticed too that if I am not active, I have to watch my food intake very carefully. I do not like watching my intake that carefully, I enjoy eating so have to push myself to keep moving.
Keeping positive is so very important, I find that much easier if busy and also seeing new things. So I push myself there, I wish I felt eager to do housework, that is an area where I could really use improvement!
Talk again soon, 4ever!
love, Mary
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Hello Kathy28,
I have been gone so am trying to catch up on posts, not sure how I am doing. I saw your question about your sis's treatment protocol, Taxol/Carbo followed by EC. It sounds the same as most of the other people here, the caveat being that the Carbo seems to be a more recent addition to treatment plans. I can't offer much wisdom on trials, but it sounds to me like the standard arm of the trial would be the important one, with the other arms being placebo? Not sure about that, I don't why they would give anyone who needed treatment a placebo. I won't say any more about it, since I really don't know. I did have Cytoxan, but there was no mention of Carbo back then, it seems to have come into regular use fairly recently, it must have benefits over the other choices.
I think it is good that you and your sis studied up on alternative treatments before starting the orthodox treatment. That way you can pump up her body while the chemo is doing its' work. When I was diagnosed I knew nothing, and just immediately jumped into surgery then the chemotherapy. I did not come through my chemo as well as Sylvia did; she had also studied up well before going into it. I still worry when I let myself get overtired, I worry that my immune system will go down and I will succumb again. I try not to let it rule my life, however.
Best wishes to you, your sis, and her DH,
Talk to you soon, Mary
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Hi, KathSeward,
Wow, the pics you posted of your daughter's wedding are so beautiful, she is a beautiful bride and he is a very handsome groom. The background in one pic looks very much like a place we sat in Italy, just gorgeous. And you look wonderful, healthy and happy. It looks like your hair has a hint of red in it, is that so?
How coincidental about the Mad Max movie being shot there where you are, I have watched that movie many times. I will have to watch it again, and think about you being nearby the area. I wonder what movie Nicole Kidman was making there, she has made so many.
Hope you are feeling well, and positive. I am invited to a wedding today, it will not be a beautiful day as you had, I think we are in for rain.
Talk to you soon! Mary
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Hi, Rhonda
I hope I will get back to Italy, I plan on it! And take more time in a few places, and enjoy. Greece was beautiful too, I get the impression that they are struggling a bit to get back into the heavier tourist market, perhaps the negative news about their economy and so forth affects that. On the bright side, there were not nearly so many tourists as in Italy, but we were only in Corfu so can't comment on the rest of the country. We had lunch in Corfu at a little organic winery in the country and we were the only people there for about an hour before another group came in. I think the former Yugoslavia countries are the same, they are still recovering from the war of the early 1990's; and I think they are trying hard to pick up more tourism, since the coastal cities really have no other industry. Very beautiful places, our guide told us that real estate prices are already climbing as more people move in and back; I guess that is a good sign.
Sicily was also not so crowded with tourists as mainland Italy. May is considered still a bit off-season, but weather-wise I think it was perfect.
Talk to you again soon Rhonda
Love, Mary
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Hi, Adagio
I am back from Europe, and yes, I am always nervous before trips. About the packing, and the weather, and the flying etc. etc. And I agree, once on the way my cares fall away and I am happy. Did not get a whole lot of rest, but stayed pretty active. And your prayers worked, because I was able to walk miles a day on my knee. At night I would fill a bag with crushed ice, wrap it in a towel and take it to bed with me. This was a success except for the night the bag came open and got me and the bed a little wet! The knee is not pain-free but so much better I assume it's because of the shot. Thank you!
Talk to you soon, love,
Mary
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Hello Mary,
I can finally sit down and say welcome back to the thread. I have just read the posts where you have been catching up with everyone and congratulate you on having done it so promptly. The thread was quiet for some weeks, so I think people have been getting out and about more with the better weather.
It is obvious from your posts that you had a really enjoyable and interesting trip and it is one you will never forget.
The countries that you visited are not ones that I have been to. We have lots of Eastern Europeans coming to the UK to work, so I thought their countries must be very poor. It is quite difficult to understand what goes on. I recently posted an article about Hungary, where you can get proton beam radiotherapy and how men here with prostate cancer are going there and paying to get treatment. We shall not have proton beam therapy here for many years. We seem so far behind for cancer treatment. The waiting for treatment seems to be getting worse and worse.
Did you have an email from Chris Woollams? It is entitled Shock! Alternative treatment works! It came last week and I was puzzled to see tht it was dated April 3rd 2017! I have not gone through it yet.
The usual group members have been posting – adagio, Rhonda, Pam, Val, Kathesward, and Lou.
We have not heard from the two new members, Flo and Kathy for a while. I do hope all is well.
We have not heard from Amanda or Hanieh for a while. Amanda may be getting ready to on her trip to Singapore and Hanieh may be busy with work. I was wondering what Hanieh thought about the election results in Iran today.
I see that Donald Trump is still being chased by the media in the US and here in the UK there is no let up. Of course we have a general Election on June 8th and I shall be glad when it is over. I do not think Theresa May is going to deliver on the Brexit for which we voted.
That it about all for today. It is nice to have you back.
Love.
Sylvia xxxx
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Hello Rhonda,
I wanted to let you know that I have just read the link that you put in your post on May 17th.
Thank you very much for doing that.
I must admit that I had not heard of True Beam Radiotherapy. It definitely sounds a big improvement on the conventional radiotherapy that I had. I think it is so good that the patient and the radiologist can actually talk to one another during the actual treatment. It is also a good idea that the patient can also listen to some music. I know I felt very vulnerable lying on the bed of the machine and watching it move around above me. It is also a lonely experience, even though the treatment does not last for long. It is also strange being alone in a darkened room as the radiologist leaves to do her work outside the room.
It is not Proton Beam Therapy, but it is a big improvement.
I did not know, either, that a tumour can move around during ordinary radiotherapy treatment. Of course my own tumour was not there, because I had had six months of chemotherapy and then a mastectomy before the radiotherapy.
I hope all is progressing well with you.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
Here are the two photographs of the True Beam Therapy machine that are in the link that Rhonda posted on May 17th.
Best wishes
Sylvia xxxx
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this is me sitting high on the way up a mountain with view overlooking the Bay of Kotor Montenegro, the larger ship you can see in the bay behind me is our cruise vessel.0 -
cruising into Sicily with Mt. Etna in the center0 -
on the way up a mountain in Kotor Montenegro overlooking Bay, larger ship below is ours0 -
Maryna - sounds like your vacation was fabulous. Thanks for sharing the photos. I have never been on a cruise ship, but would like to try it one day. I have been to a few of the places you mentioned. I particularly loved the Amalfi Coast - with all it's hills and narrow towns with hidden restaruants and shops in the alleys. We actually stayed in Amalfi itself and it was so refreshing to actually see the fishermen repair their nets by hand right by the water's edge. I have not been to Croatia or Slovenia both of which my husband would like to see, so health allowing, perhaps one day we will travel there too. I am particularly drawn to walled cities and the history surrounding them, and there are quite a few in Europe. Aren't the Lippenzaner horses fabulous - we had a visiting troupe of them here in Vancouver in the early Spring - they are such beautiful animals. I have been to Venice and we did enjoy it immensely - we went in October, so it was not too busy - visiting there in July or August would be not too pleasant with so many people and very hot.
You certainly made the most of your time and saw a whole lot of fascinating places - your descriptions make me want to pack my bags and go somewhere. I am so happy that your knee stood up to the walking and that the pain was manageable. Your comment about forgetting about cancer while you were away really resonated with me - I find that as well, that when I am away exploring new and interesting places, I seldom think about my problems - mostly I give thanks that I can be where I am and have the health and strength to travel. It is a gift to be able to see other parts of the world.
What was your favourite part of your trip? Although it sounds like you enjoyed everywhere. Which cruise ship company did you travel with?
Now you are back to reality and the mundane of everyday life - oh well!!! Perhaps, you will plan another trip soon.
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Kath - so glad you had a good time at your daughter's wedding. The photos are wonderful, and it sounds like it was a perfect day. Try not to worry about your aches and pains, most of us have them - it is our new normal. The worst part is that with every ache or pain, we think it is cancer, and that is very bleak for us. Like Sylvia often says, we need to keep ourselves busy and focus on positive stuff - having said that - we all have our moments of going to the dark places.
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