Calling all triple negative breast cancer patients in the UK
Comments
-
Hello Joliel
It was so nice to hear from you. I can see that you are very busy with family matters and we all know how demanding that can be. Your days must be very full, what with looking after your own family and trying to take care of your parents. How many children do you have and how old are they?
It must be very difficult trying to do your best for your parents when they are a two hour drive away. I hope the situation will get better when you have set up some social services to keep them independent in their home.
Make sure you look after yourself to the best of your ability and try not to get too stressed. Remember, you have been through a nasty disease and you need time to yourself and some relaxation.
What do you do for a career?
I do hope all goes well with your next three-monthly check up with your oncologist. We all know the fear and dread that we experience when we have to face these check ups. It does tend to get better but we are always afraid of bad news. I am at the stage where I no longer have any check ups. In one way I was glad not to have to go to the hospital, after ten long years, but sometimes I do wonder what is going on in my body. We cannot take anything for granted. Everything seems to be before and after diagnosis in our life.
Dates take on special significance. May 17th in 2006 I was in Exeter Royal Devon Hospital, having my right breast removed. It was one of the worst days for me, after six months of chemotherapy, which were relatively easy, because I knew I would be in hospital for five days and it was a new experience for me. I hated not being back home. Somehow I survived.
You seem to be doing fine and celebrate the fact that you are now 18 months since diagnosis.
What did you think of the postcards of Exmouth? No one has commented on them.
Sending best wishes to Australia.
Sylvia xxxx
0 -
Hello Hanieh,
It was nice to hear from you and I am glad that you are keeping busy but do not forget to take the time to smell the roses, or whatever flower makes you feel good.
What did you think of the postcards of Exmouth that I put on the thread? Raymond has a photograph of a tree peony that he took in my brother's garden. He also lives in Exmouth, just up the road to me, and is a keen gardener.
I have been busy today working in the grounds and planting some new shrubs in a new bed that we made at the back. It should look very colourful when the shrubs are established.
That is all for today.
Love
Sylvia xxxx
0 -
Tree peony
I do not know the name of this plant.
They are both in my brother's garden
Best wishes
Sylvia
0 -
Hi Sylvia
Warsaw is a very stylish city. It is absolutely spotless and has an energetic feeling. Here are a few pictures:
I don't know anawful lot about People before Profit but here is a link to their website:
http://www.peoplebeforeprofit.ie
Here is an interesting article by one of my favourite economists, it is called a Nation once again but it is NI focused:
Michael
0 -
Hi Sylvia ,
To be honest with you, I sometimes feel envious of you and Mary to have the chance to be in contact with nature and all its beauties. We just have such chances in the North. Yet there should be some free time to go there. That's why I m always looking forward to being retired when you have the chance to live wherever you like. The postcards were amazing.
Tomorrow we will take a trip to the North. I will tell you more about it by some pictures when I come back.
Lots of love
Hanieh
0 -
Hello Michael,
Thank you for your post and the lovely photographs. Even before I had read what you had written, and had just looked at the photographs, I thought how clean and tidy everything looked. It puts us to shame in this country. Here in Exmouth we have dirty uneven paving stones, cigarette buts everywhere, not to mention weeds. It is getting worse and worse. Would you believe that I often sweep the pavements in front of our complex and do weeding. All the cuts mean that the grass cutting by the council leaves much to be desired on the highways.
It was pristine in Canada when we lived there, but I do not know what it is like now..
Thank you for the links. I shall certainly look at them later. I have just printed off link 15 and am going to read it today.
I shall be so glad when the referendum is over. I am eagerly awaiting the Chilcot report!
Have you any travelling plans for the summer?
Keep posting. Best wishes.
Sylvia
0 -
Hello Hanieh,
Thank you for your post. You are far too young to be thinking about retirement. Do not wish your life away! Just take advantage of travelling when you can and going to the north of your own country as often as you can.
It is true that in retirement you can choose where to live to a certain extent. There is never a perfect situation. Just enjoy life.
Please tell us all about your journey to the North and post some photographs.
Sending you fond thoughts.
Sylvia xxxx
0 -
Hello Sylvia,
I am a registered nurse and I manage an aged care service where i am a director of nursing. It is a very busy job. I took 12 months out of the work force when I was diagnosed and have been back at work since Feb this year. Lately I think I have let myself get too tired and so I am trying to refocus on my health. I do eat well and exercise most days. I've noticed that when I get really tired I feel achy and unwell.
I love the photos you and the others post, they make me want to travel, something I really enjoy. I hope to do more of it.
All the best
0 -
Hello Joliel,
Thank you for your post. You are doing a very useful, but very stressful job. I can understand why you are so busy.
I am convinced there is a strong connection between stress and the development of breast cancer. I think all work in the public sector, especially teaching, nursing and all things medical, not to mention social welfare work, is very demanding and requires total dedication. I think it is the duty of all governments to take care of their citizens from the cradle to the grave. I judge a society on how it treats its most needy and most disadvantaged, and on that score this country under this present government is not doing well.
I can understand why you took twelve months out of the workforce when you were diagnosed. You needed all the rest and relaxation that you could get. Some women do carry on working, but I do not know how they do it. I hope you are settling back into work and that it is not taking too big a toll on you. I have learned to read my body and I know when I am going through negative stress.
I think you are right to refocus on your health, especially if you feel you are letting yourself get too tired. I am sure you eat well and exercise but remember relaxation and avoidance of negative stress is very important.
It makes me happy to know that you enjoy the photographs and I do see them as a form of therapy.
Have you done much travelling? I think threads like these are not only great for sharing our breast cancer experiences, but also for travelling the world on our screens. Tell us a bit about your life in Australia. Whereabouts in Australia do you live? We had a lovely Australian woman called Liv, really lively who lived in Perth. She posted a lot and then suddenly disappeared. I find that part of this thread very hard, as we are left at loose ends. We just do not know what happened to her.
What do you like to do for hobbies? Do you like reading?
Keep in touch and take care.
Today is exactly 10 years and 11 months since diagnosis. I have just one month to go before I reach 11 years.
Fond thoughts.
Sylvia xxxx
0 -
Sylvia, hello and greetings to all,
I love your pic postcards of Exmouth, very picturesque. I bet the tourists flock there when the weather is nice. Do you live close to the shore, or farther back from it?
I thought the pink flower belonging to your brother was a peony, but the leaves are different than my peony. Same color, though.
I am back from my trip, very nice. It did rain at some point every day, which is very unusual for that area. The area did need some rain, but they are not really set up for the amounts of rain they have been getting. The streets tend to flood easily. But there are a lot of lakes in the area, and they are all full which is good. A couple of them had been as much as 50 feet low. I posted a pic earlier of my brother's backyard oasis, everything is beautiful and green; even though there are lots of cacti plants around.
I have been somewhat keeping up with posts, but haven't followed any links as of yet.
Have been trying not to think much about cancer while gone, but I was frequently reminded by the fatigue which sets in for me after a couple of days of being "out of routine". However, I did drive myself there and back, but I split my trip into 2 days. Not like my old self quite, but happy to be out and about. Joliel, I agree with you about "getting too tired and feeling achy and unwell", I feel like that today somewhat. Sounds like you have a very busy life!
Have to go, I am supposed to go to an anniversary dinner tonight. Was trying to think of an excuse not to but can't think of one, if I say I don't feel well they will worry.
Talk soon, Mary
0 -
Hi from a wet Ireland. Does anyone know how to persuade a dog to like walking in the rain? :-)
Here is link 16:
http://www.curetoday.com/articles/breast-cancer-an...
Michael
0 -
Hi Sylvia, Mary and all
I m now in North trying to post some pictures.
0 -
Hanieh,
What beautiful pictures, I am glad you are somewhere with such lovely sights. I have looked at a map of Iran and see that the city where you live is in dry country, so you go north to see some green. I happened to see a short segment on television last night about Tehran, one shot showed huge mountains in the background. Is that where you go when you say north? There are also mountain ranges to the south, I see. Anyway, enjoy your time away, and try not to worry about anything!
Talk soon,
Mary
0 -
Hello Mary, Hanieh and Michael,
Thank you all for your posts. I am just getting ready to do a bit of shopping. I shall post later when I have more time.
I would just like to say that the photographs you sent, Hanieh, are so beautiful. Everything looks so colourful and lush. I understand why you go to that region.
I am glad you had a safe trip, Mary. I shall talk later.
Thank you for the link, Michael. I cannot understand that you have a dog in Northern Ireland that does not like the rain! Could it be something to do with his 'genes'?!!!
Best wishes to all.
Sylvia
0 -
Hello Mary,
I was glad to know you liked the photographs of Exmouth. The seaside is a very popular family place. I do live quite close to the seafront, but it is about a ten minute walk. From where I live, you would not know the seafront is that close because it is very quiet compared to the noise on the seafront a lot of the time.
The peony is what my brother calls a tree peony. The potted plant taken in his garden is a syringa or lilac.
It seems we are having strange weather patterns all round the world, so I am not surprised about the rain where your brother lives.
I think it is good for all of us to try not to focus on cancer. As you say, reminders pop up. What we have to bear in mind is that as the years go by we are also ageing. We just have to learn to pace ourselves.
Here in the UK the scaremongering continues about the dire consequences of not staying in the EU. I now have to turn off all mention of it as I am voting to leave no matter what on the grounds that the EU is anti-democratic, bureaucratic, and too lax on immigration.
That is about all for now.
Fond thoughts.
Sylvia xxxx
0 -
Hello Michael,
Thank you for taking the trouble to post all these links. I am going to try to get to read link 16 today.
What are your thoughts on the EU referendum? What are your thoughts on TTIP? As I understand it this is a free trade agreement between Europe and the US. It does not sound good to me. I am very worried about the NHS. It is being underfunded and is trying to cope with too many people. It is not good to hear that patients will have to wait longer for treatment as well as for appointments with their GP. I think both sides are abusing the system.
Are you going to be taking any more trips to foreign climes?
I hope you have some dry days now, so that your dog will be happier!
Take care.
Best wishes.
Sylvia
0 -
Hello Hanieh,
I have been looking at your photographs today and find them so interesting. How long a holiday will you have in the North before returning home?
I do hope you will feel better for this break.
I am waiting for June 24th so that this silly referendum will be over. It has been so vicious that it has lost all meaning. I do hope the politicians will not bore us all summer analysing the results.
That is all for now.
Fond thoughts.
Sylvia xxxx
0 -
Hello Michael,
I finally looked over Link 15 and find it so encouraging that there are treatments already here and still coming for the different types of breast cancer. I found it very discouraging to read the statistic that stated "breast cancer prevalence is expected to increase 50% over the next 10-15 years".
I also read of the puzzlement of "experts" in the field who can't understand why a woman would choose mastectomy when studies tell her that a lumpectomy would be just fine. How many times have we heard of women who have lumpectomies and then have to go back and have mastectomies because of residual cancer? And it is probably the same reason why women have 2 breasts removed when the cancer is only in 1 breast. I think even the best doctors and clinicians sometimes forget we are people with hopes and fears, not just patients, or subjects in a trial.
I was glad to see that there will possibly be an increase in screening for lung cancer. When I was diagnosed with TNBC and had a rt. mastectomy, I was told the odds were that if the cancer returned it would probably not be in the other breast, but would be in the lungs, brain, or bone. I asked about screening and was told there really wasn't anything other than scans, and it's not very healthy to have those over and over. I have had chest x-ray, but was told there is really no way to detect the earliest forms of lung cancer, when it is very treatable. Usually by the time you know you have it, it is late days; hopefully they will be coming out with methods of earlier detection. I do know a lady with TNBC who has been on a daily chemo pill for 3 years now, she was diagnosed with mets to her lungs at the same time as diagnosis with BC.
As to the prostate cancer field, I know quite a few men with it; they all seem to be living with it but with varying degrees of quality of life. I was surprised to see that proton beam therapy is seen as a very encouraging treatment, but was very limited in patient access. When I looked up places in the US that had it, there seemed to be a large number of treatment centers that had the machines. I also didn't know that there are different views on the efficacy of the PSA tests in diagnosing the cancer.
Thanks for posting the links, Michael, hope you are well. The rain seems to be following all of us around, although here we have had a few warm, sunny days. The forecast looks wet though.
Talk soon, Mary
0 -
Hi Sylvia, Mary and all
Thank you so much for your kind words.
I was in North for 3 days to take a rest. It was fantastic. Actually we live in the southern mountain side of Alborz and the North is located in the green seaside of the Caspian sea in the northern mountain side of Alborz which is composed of two provinces called Mazandaran and Gilan. For us , it's a three- hour ride through the mountainous roads of Haraz or Chalous.
Mary , you seem to have taken an amazing trip. would you please post more pictures of the places you went?
Sylvia, I rarely listen to news as I always get disappointed with all happening in Iran and around the world. Before this disease, I used to listen to different news on different channels to get a general view of what was going on. But now, I have the least interest in political issues. The politicians are just a bunch ofI indecent guys imposing their own interests and prejudice on people's lives. Yet, I really hope the results of the referendum will be what you wish.
By the way, I have passed the written exam and if I manage to be successful in the interview the next Sunday, I will be the the young adults' teacher observer.
Lots of love
Hanieh
0 -
Hi, Hanieh
Glad you had a good trip away, 3 hours is not too bad a drive. My trip was to Texas to visit my brother and his wife. They moved to a new town a few years ago and I had not been to their location. They used to live in West Texas which is very flat, dry, and really not attractive at all; but there is a lot of oil under the ground. When my brother retired, they moved to the hill country of Texas, which has lots of lakes, and wildflowers, and beautiful scenery. It is a drier climate than where I live, they have quite a lot of cactus plants, and usually much less rainfall. However, when I was there it rained almost every day! The streets don't have a lot of drainage systems put in, and they were often flooded. But we still had a good time just being together. One day we drove another hour and went to an area which was heavily settled by German immigrants in the 1800's, it is a very busy tourist area. I was amazed by all the wineries around, must be perfect weather for growing grapes. We had a wonderful dinner there in a very small bistro run by a chef/owner named Otto, and we walked around to some of the shops. One of them was filled with items made from the local granite, they had beautiful huge slabs of granite to use for countertops, tabletops, and also other exotic stones of every color imaginable. Quartz, etc. Nearby is a very unusual mountain made of granite, we went and looked at it, it is disappearing from all the granite being taken from it! After a few shops, my leg fatigue kicked in and I was ready to sit. I don't know if I will ever get my stamina back. We also drove to a very small town made famous in a country-western song; there were musicians sitting out under trees playing guitars and singing for a very small group of listeners.
It is a 11-12 hour drive to where they live, I went alone and did the trip in 2 days. I enjoyed the time alone, it made me feel young again to be fancy-free going down the highway!
Monday I had my mediport removed, the port I was given chemo through. I celebrated with a double-scoop peach ice-cream cone! I usually try to avoid the cow dairy and excessive sugar, but it just seemed like a day to break the rules! Haha. My BC surgeon did the removal, she is a very kind and patient doc, and I told her about my continuing fatigue and weakness after much exertion. She asked some pointed questions but ended up like the other docs, and really doesn't have any answers. I do think I am getting a bit better though, or maybe I am just getting used to it.
I am afraid I don't have a lot of pictures from my trip, years ago I took rolls and rolls of film on every occasion; now that I have the ease of a cell phone with an excellent camera, I don't take very many. My brother is supposed to send me some that he took, I will post what I can.
Hanieh, congratulations on passing the written exam, I am sure you will pass the interview with flying colors. I think it's so wonderful that you have work you love!
We will talk soon, Mary
0 -
Hello Hanieh,
I can understand that you rarely listen to the news in order to avoid disappointment. The world is in a real mess and I do wonder where it will all end. I cannot stop watching the news, but I have my own views and opinions, and no one can influence me. I watch a lot of news on RT as I find topics are discussed there that we do not get on BBC. I have some favourite programmes, all discussions and/or interviews. I watch Crosstalk with Peter Lavelle, Going underground, The Keiser Report with Max Keiser, not to mention Redacted Tonight with Lee Camp. He really speaks his mind on what is going on and he has an amazing team. These people knock sparks off our politicians.
Congratulations on passing your written exam. I do hope you will be successful in your interview next Sunday. I am sure you can do it.
We are coming up to a long weekend holiday, Spring Bank Holiday on Monday. I hope to be less busy and to get back to reading a French novel that was written by a French woman who lives in my neighbourhood. I am finding it very interesting.
Thinking of you.
Best wishes.
Sylvia xxxx
0 -
Hello Michael,
I have just read through your link 16 entitled Expert Separates Fact from Fiction. This one, which is all about being pregnant and having breast cancer at the same time, I am sure this will be of great help to anyone finding themselves in this situation. I would recommend them to read this article by following your link.
I was interested to know that the average age of developing breast cancer is 61 in the US. Obviously those patients who are pregnant are much younger. It says that some of these women may be born with a higher genetic risk of developing breast cancer, such as with BRCA1 and BRCA2 mutations, and are more likely to have aggressive tumours like triple negative receptors.
It further states that pregnant women are more likely to be at a more advanced stage because of the problem of detecting a breast mass when you are pregnant.
I do hope patients in this situation will read the article.
Best wishes.
Sylvia
0 -
This is a painted bunting I got to see while in Texas. My husband said he saw one here at one time, but I never saw one before. It is a shy bird, but my brother got some pictures of it. It has a nest somewhere in his yard. I like birds!
0 -
To all,
I should have said he and his mate have a nest, she is a dull-colored bird, I do have a pic of her too.
Later, Mary
0 -
Hello Sylvia and all,
I have had a busy week at work as well as seeing my oncologist for my 3 monthly check up. I have blood tests beforehand including tumour markers so I always feel somewhat apprehensive before the appointment. He was very happy with my results and says my bloods are good and that I have nothing to worry about. Interestingly he said to me so you haven't changed! He said you are back working in a busy full time career, how are you processing what happened to you? It is so true, it was like a light bulb moment, even though I knew this deep down, I have carried on like it didn't happen! But it did and it has left its mark absolutely. I am not the same person, I can no longer go on like I'm invincible. There is the before bc and then there is me after bc with all the scars and post traumatic stress that go with it. I am at the 18 month mark post diagnosis and it comes with a mixture of ongoing hope and fear of recurrence. I now have to learn how to manage that and keep putting one foot in front of the other.
In answer to some of your questions Sylvia, I have travelled to Europe 3 times. London, France, Italy, Spain. I love it over there.We spent probably 3 months all up in Italy. I have also been to New Zealand, Noumea, Western Samoa , Vanuatu and Malaysia. All of those places are much closer to Australia. I live in Melbourne. When I work out how to post some pictures of where I live I will! I love seeing the pictures that you all post, it's great that we are from all over the world. Haineh, your photos of your trip are lovely, and Mary, love the photo of the multi coloured bird, so gorgeous.
Talk again soon xxx
0 -
Good evening everyone, here is link 17:
http://now.tufts.edu/articles/front-lines-war-agai...
Sylvia, I don't know how the referendum will go. It seems to me that older people want out and the young want to stay in. I am glad that I have decided to vote the way the kids want to vote so I don't have to make the decision.
Did you see the piece in the Guardian today "Tony Blair: Corbyn government would be a dangerous experiment"
Good grief, that man has no self insight. A Corbyn goverment couldn't possibly be any more dangerous than Blair was.
Michael
0 -
Hello, Michael
I read through Link 17, it was about the insights of 3 different docs in the US.
The first part referenced yearly mammograms, and the cost, how often to have them. I know many women who had mammograms followed by biopsies which were negative for cancer, I also know women whose tumors were discovered by mammogram. In my case, mammogram did not see my tumor, or it was just too small 3 months prior to my discovery. It is far from a perfect test, but I guess it is all we have. One thing about having a regular mammogram, it does make one aware of the possibility that a tumor is always possible and it is best to be vigilant. There is another theory stating that having many mammograms may increase the risk of breast cancer!
The next section was about the new idea of treating cancer like a chronic disease. I do know people who are already in this situation, one good friend has been living in this manner with kidney cancer for over 11 years. He is always on some type of drug, either oral or IV, and is switched from drug to drug as their efficacy drops. He has a good quality of life, but some of the drugs have had strong negative side effects for him. He has scans every 3 months, and always has tumors, but they are controlled. He has had many surgeries in the past, but the remaining tumors cannot be surgically removed.
The third part is about palliative care, a doctor talks about a patient who she assisted in getting home hospice care. Seems to me there are not really many choices when it comes to "choosing" end-of-life therapies. Docs cannot legally kill their patients here, so really it's a matter of does one keep doing therapies or just let the disease take its' course?
Thank you, Michael, for posting the Link.
Sylvia, I have not received a Chris Woollams article since April, do you think he is on vacation? Or have I missed something?
Hope all are well, Mary
0 -
Hi Joliel,
You and I had our BC diagnoses in the same year, me in the beginning of said year and you at the end; it sounds like we are in somewhat the same place mentally, not sure where you are physically. I also realize that I am not the same person I was before, and I cannot do all the physical things I did before. I can do some of them, but I will be in some degree of pain afterwards, and I tire easily whereas before I was the Energizer bunny, never standing still. Mentally I go through times of being quite down, but am beginning to realize that I have really come a long positive way from where I was. I told a friend yesterday that it seems the good things come on so slowly one doesn't notice them for a while, but the bad things seem to happen so quickly. Just a matter of perception, I suppose. But you are right, we have to just keep on keeping on, as they say!
It sounds like you are very well-travelled, I have aspirations of getting to just some of the places you have been. Right now I have plans for Aruba in December, and am tentatively working on some others, still in planning stage.
I am glad you liked the pic that my brother took of the painted bunting in his yard, I was thrilled to see a pair there in Texas. I think birds add so much to the beauty of nature, I never take them, or their songs for granted. Right now I am feeding many, many hummingbirds that come north for the summer; they are amazing creatures; I always have feed out for the many songbirds that live here in Missouri. Although this time of year the possums, raccoons, and squirrels get more than their share of it!
Will talk to you later, be well!
Mary
0 -
Hello liz2528
Thank you for your PM. I am answering on our UK thread because someone viewing from London may be able to help with an oncologist, but we cannot really recommend someone as we are not doctors. We can only say what we think of our own medical teams.
In 2005 I went through treatment at the RD&E in Exeter and had excellent treatment from both my oncologist and breast cancer consultant.
I was sorry to hear what you are going through, but just remember there is excellent treatment out there. As for London, I can only say that if I were living there, I would probably try to get an appointment at the Royal Marsden Hospital which has an excellent reputation.
Why not come and join us?
I am hoping that sam52 who had treatment in London when she was diagnosed, may still be viewing and able to help.
Please let me know how you get on.
Best wishes
Sylvia xxxx
0 -
Hello Mary,
I am trying to catch up with the posts. We have just had a bank holiday weekend and I decided to have a bit of a rest as I was feeling tired. I have had a lot to do here at our complex. I am hoping i shall have more free time in June.
I thought that photograph of the bird you posted was amazing.
Fond thoughts.
Sylvia xxxx
0
