Calling all triple negative breast cancer patients in the UK
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Do you remember that I said I cannot sleep due to all the dramatic changes that are happening to me?
Yesterday, during Christmas break, I received the UK embassy’s letter about my successful application to continue my studies there.
Actually, I had applied to study MBA in Newcastle upon Tyne to further develop my business and make some professional connections to enter the international world of business. I am so excited about this experience and at the same time stressed out about the fact that I have to leave my family behind for some time.
My admission was done in a short time as all my documents and assessments were ready including my BA and MA translations and evaluations by WES as well as my language assessment of C1. Upon sending my application and CV, I had to answer a questionnaire about some general and technical questions related to my situation, my objectives and my information about the course requirements and strategies. The admission process was really more strict than Canada. Then, I had to pass an online interview with the university to confirm my qualifications. None of these was ever done for my Canada applications.
Now, I am full of excitement, hope and at the same time worries and anxieties about my new adventure in life. It is as if I am about to start a completely different life from my past. I look forward to new opportunities and probable challenges and hope to manage everything alone.
I am trying to be a role model of an active woman who always tries to live a productive and above the average life for my daughter who is now 18. I cannot take her with me as my dependent but have assured her that I would support her if she makes all her effort to raise her qualifications to get admission to continue her studies abroad. She has a boy friend who is about to settle in Canada but she wants to try her chances in other countries as well. My husband, although only 46, has some months to retire and during my study time we have to come and go. In fact, he can only visit me on a tourist visa. This is quite hard for both of us as we are both getting out of our comfort zones for the sake of a better future. We both love each other passionately yet we think we need this experience to take further steps in life.
So, this is my whole situation at the moment; excitement, hope, anxiety and fear of separation and probable challenges.
And one more and even bigger challenge : we still have not told our parents about this as their traditional style of thinking can never permit a woman to leave her family temporarily to study and pursue her dreams. We have only 3 weeks to tell them and get their satisfaction without bothering them. I sometimes feel sorry that I could not meet their expectations as a stereotype girl and woman. I never want to annoy them but if I don’t pursue my goals, I think I feel dead far before my death time.
Again I wish you all the best in the coming year. Please pray for me that everything goes smoothly for me.
💐💐💐💐
Love
Hanieh
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Hello Mary and Hanieh,
I just wanted to wish both of you the very best for the New Year 2024.
I think the internet etc. has opened up very different ways of teaching English. I do not know if it would suit me. I loved being in a classroom and having contact with my students. I taught in France for four years, three years in Morocco, as well as time in the UK. I had a great relationship with my students, was well liked and got good results.
We have to remember that the thread is meant to be for breast cancer support and nothing like that is happening now.
I know that Gill is very angry and upset about how the technalogical changes have spoilt everything for us. I do not think she will post any more.
I think it is time to end it.
Love.
Sylvia xxxx
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Hi Sylvia,
Sorry for sharing my story.
I didn’t think I would cause any inconvenience here. By sharing stories of some achievements, I thought I would inject hope to those struggling with this disease through the darkest nights of their lives. I remember all my hopeless nights with this terrifying TNBC where I could not see any future for myself and felt that my whole life was ruined at 32 and then again at 35 because of some cellular malfunctioning. In fact, the only thing that gave me hope to fight this battle and stand up on my feet again was to see the success stories of others moving on and achieve greater milestones in life after this disease.
Again sorry for all that bothered you. I just meant to share my good feelings with you.
Good bye
Wish you all the best.
💐🌺🪷
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Hello Hanieh,
I just want to assure you that you did not cause any inconvenience and I did not intend to upset you.
I was glad to know that you got through your two episodes of breast cancer and that you turned around your life and have made a successful career for yourself. We all understand that we are survivors and how hard the journey with cancer is. We were glad to have you share your good feelings with us.
When I said it was time to end our thread it was not directed at you. The technological new format has spoilt the thread for us and we do not think it can recover.
I wish you all the very best with your experience in a UK university. Good luck!
Wishing you all the very best. Take care.
Love.
Sylvia xxxx
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Hello Everyone,
Happy New Year to all! I wish everyone blessings and all the best in the days ahead. I truly hope this thread does not come to an end. It was a life line for me and has been. It’s weird to say but there is comfort in communicating with others who have had the same diagnosis and gone thru the same struggles, same medical treatment, and perhaps since we all different have had various outcomes.
Hanieh I hope you continue to post as well. It is very interesting as you go through this professional progression. Sylvia is very much interested in everyone’s life.I’ve had a few travels this past fall and when I returned I was not feeling well. I had some blood work done and my primary care physician said that I am diabetic. Nothing that I have to take medicine nor do I have to take insulin shots. They do want me to walk more and lose some weight. It is very disheartening since I eat very well. Mostly plant based diet my meat consumption is very low and I don’t eat fast food at all and never drink soda pop. There is no family history of diabetes and my primary care physician is thinking that the chemotherapy perhaps flipped my metabolism upside down. Have you guys ever heard of this?
Paula
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Hello Paula,
I was just popping in to see if there was anything going on with this thread and I was so pleased to see that you had posted.
Mary from the US and Gill form the UK like me, did continue to post for some time, but nothing felt the same with all the changes in the form of the forum. I do not know if they will post again.
Thank you for your post. I do remember you well.
I was sorry to read that you have been diagnosed with diabetes, but it is good that you are not taking any medication or having insulin injections. It is a nasty disease, but it can be managed if you keep to a strict healthy diet. Losing weight if you are overweight, keeping active and keeping away from sugar will help. you need to keep an eye on your blood sugar (blood glucose level). Your GP will tell you what the numbers should be. Here in the UK diabetes is one of the major illnesses and it is awful if you do not control it. I am sure you will deal with it.
As for diabetes being associated with chemotherapy, I do not know about that, but it would not surprise me. Chemotherapy and radiotherapy do all sorts of things to our body and could easily turn everything upside down. We all know about neuropathy, lymphoedema, and suppressed immune system.
I do hope that Hannieh will come back to us. She misunderstood what I said. She was quite special as I invited her to join us on our thread when I found here somewhat lost and posting somewhere else.
I still do not like the fact that the number of views was completely changed and despite requests they were not put back.
Thinking of you and sendng you love and best wishes.
Love.
Sylvia xxxx
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Hello Gill and Mary,
I popped into the thread to see if either of you had posted. I was about to get in touch with Mary to see if she had any news about what was going on with her. I also wanted to let you know that there was a post from Paula (pkville).
Thinking of both of you. I did not get a reply from adagio but she may have given up trying to get back in. If you stay off the thread it seems quite difficult to get yourself back in.
By the way our views should now be about 149,364 and the posts are about accurate at 16,596.
Love.
Sylvia xxxx
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Hello Paula,
Wishing you a belated Happy New Year. So nice to hear from you and catch up on your news. It's annoying to be told you have diabetes when you're so conscientious about healthy eating. My husband was told he was diabetic about 3 years ago, then two years ago he was told he was only pre-diabetic, last month at his annual assessment his blood test showed that he was no longer even pre-diabetic. His diet remained pretty much the same throughout. Apparently some medics are over zealous about the way they interpret the bloods.
It's a shame that all these changes to the website have made it so complicated to use. It used to be a friendly place where we could get sensible, down to earth advice from women who had personal experience of breast cancer, the side effects of treatment and the emotional impact.
I hope your blood sugars have returned to normal by the time you have your next test. Keep in touch.
Love,
Gill xxx
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Hi all!
I had to leave my post and forgot to hit Save, arrgghh.
Tomorrow is my lung biopsy, and I'm shook up about it.
Hi Paula, glad to see you again! Sorry about Diabetes, I think our bodies are forever changed, after having BC and chemo etc, hope you can deal with it and silence it!
Thanks for thinking of me, I love all of you and, like Paula, I'm so glad I found you here almost 10 years ago.
Mary
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Keep us posted when you get the results, @maryna8! You're in our thoughts and we'll be hoping for the best with you. ❤️
Warmly,
The Mods1 -
Hello Paula, Mary and Gill,
It feels so good to have us all taalking together once again.
Will it ever be quite the same again, that is the question.
Paula. I know you keep yourself healthy and will do everything to get rid of the diabetes. Let us know what figures they are giving you as it seems that the way they measure these diabetes numbers is different in the US to the UK. In the UK with the regular blood test they seem somewhat fixated on these numbers and keep changing them. With all of the numbers we get, a lot depends on the labs to which they send them. I was once told I had low thyroid problems by the GP surgery. At the time I checked it out with my breast cancer surgeon who is also an endocrinologist and she told me there was nothing wrong with my thyroid and different labs do different interpretations. Just tell yourself you are going to be fine and keep to a healthy weight and keep active. Steer clear of sugar.
To Mary, thinking of you and wishing you good luck.
To Gill, I shall email you later. Keep well and I heartily agree with what you say about the present government. Roll on the General Election but will it be any better?
Love and best wishes to all.
Sylvia xxxx
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Hi to all!
Okay, so a friend took me to the Hospital, and they took me back for Lung Biopsy, and then it was 2 hours of waiting for about 6 minutes of procedure. Then waited about 4+ more hours for 2 x-rays, spaced out. I had a bit of a collapsed lung, so I had to wait till they decided it was small enough that I could go home, and breathe deeply etc.
Then waited 2 days for Results, which said I had some Atypical cells, and some Benign cells, but not enough cells to decide what it was. Results: inconclusive. Patient needs another Biopsy.
So I get to do it all over again, in 2-4 weeks. Not happy about that, but I have gotten myself in a pickle. I have learned that being poked in a lung is enough to make me quite tired after a little activity. Not to mention the collapsed part.
So, dear friends, for now I'm going to ignore the Atypical part and just think inconclusive.
Love, Mary
Oh and I am going to a different Hospital and a different Doc to poke me.
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Hello Sylvia,
I think the sooner we have a General Election the better. Is it too late for Labour to save the NHS though? Only time will tell.The Tories have stopped all GP training now and our health centres are being filled with Physician Associates. These people have less training than a nurse. I have no intention of allowing one anywhere near me either at the health centre or the hospital. Some horrific mistakes have already been made by PAs.
I've paid for a consultation with my breast surgeon regarding reconstruction. My appointment is this Thursday afternoon. I'm afraid it's the only way to get on the NHS waiting list. Whether I ever reach the top of the list is another matter.
Hope both you and Raymond are keeping warm and avoiding both flu and covid.
Love,
Gill xxx
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Hi Mary,
What a chaotic day you had. When we have a biopsy, we tend to want a definitive result!
I must say, I think you're absolutely right to have your next biopsy at another hospital. This thing has been hanging over you for weeks and you need some answers. You also need to find out just how much of your lung collapsed and why you've become so tired.
I'm so sorry for all the stress you've been caused, let's hope for a better biopsy and some good results next time. Everything crossed for you.
Love
Gill xxx
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Hi Gill
It's truly been an awful January for me.
A week has passed since the biopsy, and I haven't heard a word from the other hospital. In a way I'm glad, to put it all off. And I'm still very tired in middle of the day, which gives me bad feelings. I hope all of this is not an awful mistake, but then I wish I'd just never had the Scan, and remained blissfully ignorant. Is that so bad?Hate this limbo
Did you go on the cruise?
I'm interested to see you're going to have a reconstruction. I hope it goes very well, and I'm glad you have a lot of support.
Time to wind down for the day.
Love Mary
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Hello Sylvia,
Just to let you know Liz is still cancer free after 11 years. Her joints are still bad and can only walk around a mile before her knee or hips are to painful to keep walking. We did take jobs as campsite wardens in 2022. We only did it for 8 months as it was something we had always wanted to do. Liz only worked part time. 2023 was a great year as we spent it at home again. Even though we enjoyed the campsite we were glad to get up and do what we wanted each day.
Peter
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Hello Mary,
I thought I would answer your email on the thread. I have not been looking at the thread because I thought it had not been active enough since all the upheaval with the complete format change of bc.org. I think you, Gill and I were keeping it going. Then, of course, Hanieh popped in after many years, but has not been back since and also Paula posted. Let us see how it goes.
The great surprise when had a look this morning was to see the post from PeterandLiz. Peter was always very interesting when he posted on behalf of his wife, Liz.
I was sorry to read, Mary, about your awful January and surprised that your American health system seems to be as dysfunctional as ours. I do hope you can bring all this to a conclusion on February 8th. Please let us know what happens.
I have been very busy trying to help various family members.
Raymond is plodding on as best he can, but really he has not been himself since that surprise heart attack and then triple bypass surgery in January/February 2020. It
will be four years since then on February 14th this year.
I am still looking after my cousin with all his illnesses caused by diabetes. He is now in a nursing home and I do not think he will ever return to his flat.
My two younger brothers have their own problems as well and I try to support them.
Life in the UK is not very encouraging and we seem to get more and more bad news.
I am still waiting, as far as the thread is concerned, for the number of views to be corrected. They were absolutely truncated when all the new technology took over. THE VIEWS SHOULD BE 149,4054 AND THE COMMENTS SHOULD BE 16,606. They left the comments (posts) as they should be but completely altered the views. When oh when is this going to be changed? Simple arithmetic shows their error.
I have tried to reconnect with adagio but no success.
Wishing you all the best, Mary.
Love.
Sylvia xxxx
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Hello Peter,
It was a lovely surprise to see your post. Please tell Liz that I am so glad to know that she is still cancer free after eleven years.
I was sorry to read that Liz suffers pain from her joints and that she cannot walk a lot. Many people have told me how painful joint pain is. My youngest brother suffers from this kind of pain throughout his body and he feels that it gets worse with stress. He uses some kind of gel to ease the pain. A very good product is Arnica Ice.
I was interested to know that you and Liz had taken jobs as campsite wardens in Hemsby in 2022. I bet was that was a very good experience.
I shall always remember you as the couple who were doing chocolate fountains.
I do not know what will happen with our thread. So many people went through shock when it was “improved”! It lost the intimate, homely atmosphere.
I continue to be cancer-free after nearly nineteen years. I did hear on the news yesterday that more and more people were surviving cancer.
Wishing you and Liz all the very best and thank you for popping in to the say hello.
Keep well.
Sylvia
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Hello Gill,
I just wanted to say that I hope all went well with your consultation about reconstruction on Thursday January 25th.
I do not know what to say about this country any more. Nothing seems to work. I do not know what goes on at GP surgeries. Raymond recently had to go to the surgery for an annual review and a blood test. This was carried out by a nurse practitioner. While I was there with him I had a good look round the surgery. There was no sign of any GPs and just a couple of people waiting for the nurse. It all seemed very different to the surgery we joined back in 2002 when we came to live in Exmouth. Raymond was supposed to see the doctor back in November but I was never able to get a face to face appointment for him. What goes on?
As you say, we need a General Election. Will it change anything?
Wishing you and Michael all the very best.
Love.
Sylvia xxxx
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Hello Paula, Kath and Hanieh,
I was looking back over the posts and saw that you had posted not too far back.
Paula, I was wondering how you were getting on with your diabetes. My cousin has been seriously ill due to not taking care of his diabetes and has been in hospital for weeks on end. I know that diabetes is increasing and increasing and that people do not seem to take it seriously. Proper diet and exercise are very important. Diabetes makes a person very vulnerable to heart disease, kidney problems and dementia. My cousin has all of these but he has never looked after himself. It makes you vulnerable to all sorts of infections.
Gum disease makes you very vulnerable to diabetes and heart disease as well.
Hello Kath, it would be lovely to hear from you and to have some of your expert information. How is life in Australia?
Hello Hanieh, I was wondering how you are doing at the university here in the UK?
Wishing all three of you all the very best.
Sylvia xxxx
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Hi everyone,
Thank you Sylvia for asking! I have met with a dietician who only works with diabetes I have another appointment with her next month as well. She was very helpful and had lots of insight about this condition. As far as what I’m eating she said she would not change much, I’m a pretty healthy eater. I have cut out butter and have cut down on pasta and rice. But more importantly she has urged me to get better sleep and try to relieve the stress in my life. I work for a person who is a very wealthy land developer (I have worked for him for 26 years) and he is a very complicated business man. None of his business deals are ever simple. I have been his financial person who pays his bills, keeps track of all his income and complies everything for the accountant at the end of the year. I’m going to be 67 this year and it’s just too much for me to try to keep this up so I have decided to retire. He is going to be 83 you would think he would want to slow down as well but he won’t ever retire! I’ve been walking more specifically after meals so hopefully all of that will help. My numbers are right where they want to keep people with diabetes at so hopefully they won’t go any higher and I won’t have to take medication.
The dietician did say that they are finding that lack of sleep and stress play as much of a role in diabetes as what you eat which I thought was very interesting
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Hello Paula,
I am sure you will take good care of yourself and that you will manage your diabetes and perhaps even reverse it.
I was interested in what you were told about getting better sleep and trying to relieve stress. I am sure that stress and poor quality sleep causes a lot of our ill health. It sounds as though you are ready to leave your stressful job and a boss who seems to be very stressful.
Going for a walk after meals sounds like a good idea.
I am not sure how they measure the blood glucose level in the US. I know that here in the UK the figure that is used for the HbA1c blood test for diabetes must be below 5.7% and that 6.5% or higher is a diagnosis of diabetes. However, I do think those in charge tend to change the numbers.
I think that those of us who have had breast cancer have to keep a watch on our health because of the toll that breast cancer would have had on our immune system etc.
I do not really know where the thread is going these days.
Wishing you all the very best.
Love.
Sylvia xxxx
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Good morning Sylvia,
I thought I would pop back in to tell you about our adventure on the campsite. Liz and I love going away in our motorhome so we decided we would get warden jobs for the summer season. I wanted to get jobs in Devon as we love Devon but Liz thought it was to far. We saw 2 jobs advertised only 40 miles away on the Norfolk coast. We had our interview with a lovely owner who was in his 70's and 2 wardens in the pub. The main concern was. do we drink as everyone drinks! Well they were shocked that we do not drink and do not like alcohol. No one else wanted the job so reluctantly we were given the jobs. We were told later by the boss he does not employ people like us. All the wardens are homeless and drink The even bigger shock as the weeks went by was none of the wardens or other staff wanted to work. They were the laziest bunch of people I have ever met but at the same time good fun. They could get away with this as the owner could hardly walk so did not know what was going on. The office staff hated the wardens, the maintenance staff hated the wardens it was crazy. I'm a worker and love working hard. Maybe its because I do not have to do it but In the first few weeks I worked really hard while everyone one else did nothing but drink and sit about. I even had staff hiding up petrol cans so I could not use the hedge trimmers as I was making everyone look bad. We had a manager that was not allowed to manage and was hopeless at it when he tried to. But no one cared. Liz and I took over the laundry for the 12 bungalows that were rented out each week as no one else wanted to do it. We did one day a week on a little campsite 3 miles away also owned by the same gentleman. One warden was always drunk and sadly he died at the end of last year. he was in his 60's. He did nothing for the 8 months we were there and he expected me to do all his work in the one day a week I was there for him to have a day off. We had many complaints from guests on the campsite about the wardens drinking throughout the year. On the main campsite the wardens had one day off a week. They would get a taxi into Yarmouth to go on a pub crawl. They would return so drunk some of them could hardly stand.At weekends we had campers that were friends of the wardens come and stay for a piss up. They never paid for their pitches but brought in cases of bear and wine so they could drink with the wardens at the weekend. All Liz and I wanted to do was to look after the campers and make sure they had an enjoyable time, unlike the other wardens. There was even a big review written about one of the wardens and was called "The hag of " She was lovely when sober but one of the first things we were told was if she has had a drink do not let her speak to customers as she had a temper on her. As the saying goes "You could not make this stuff up" It was the craziest year of our lives we loved and hated every minute of it but all we wanted to do was improve the campsite and look after the campers. There are many more story's of what happened on the campsite but I cannot post them on here as they were that bad. When we left in October we were told by the boss He was very impressed with us and how we had worked through the year and he had received loads of comments how nice we were by the campers but he said some of the workers don't like us because we have a can do attitude. He also said we were the first pair of wardens that have not asked him for a pay rise or more hours. Liz only worked 2 days a week. We returned home every weekend as we were not needed and we continued to take out the chocolate fountains.
On a different note Taylor (23) our son decided he wanted to work despite his cerebral palsy. We had an appointment at the job centre only to be told he has savings so we cannot help you! A job centre will only now try and find you a job if you are on benefits. If you have more than £15,000 in savings they will not try and find you a job because you are not entitled to benefits. If his savings drop below £15,000 he can then claim £70 a week benefit so they will try there hardest to find you a job at that point!
Regards
Peter
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Hello to all
Thanks Mods, I will let you know, 2nd biopsy on 12th.
Mary
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Hello all
To peterandliz, that was very entertaining, to read of your summer jobs. It sounds like the whole place, including employees, needed you; but at the same time didn't appreciate you! I admire your will to serve.
Sylvia, Gill, Paula etc. My next biopsy is on Monday, once again I am reduced to a basket of nerves. I've had a month reprieve while healing, and now staring it down again.
I'll be back soon, right now I am between errands, trying to get ready for a week of no lifting.
Love, Mary
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Hello Mary,
I have just read your latest post and wanted to say that Raymond and I shall be thinking of you on Monday February 12th. Remember, Mary, that whatever happens, you are a triple negative breast cancer survivor and you will get through it all. It is what we do! I am hoping that it will be nothing at all.
There has been no news from Gill for a little while. The last time I heard from her she was busy with those church archives down in the crypt and was trying to keep warm.
I am sure Paula will be back soon. She is dealing with her diabetes diagnosis.
I was thinking it would be interesting to hear from someone newly diagnosed with triple negative to see if there is any great difference in treatment and drugs. There seemed to be a lot of new drugs mentioned in various posts in other threads but I am not sure which ones are of benefit to hormone negative breast cancer.
I have been so busy looking after Raymond, as well as the cousin in London and trying to support my two younger brothers. I am still a director at our apartment complex.
It will be four years on February 14th since Raymond had his triple bypass surgery in the Hammersmith Hospital in London. It is not easy to forget that date! ❤️
Thinking of you and sending love and best wishes.
Sylvia xxxx
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Hello Peter,
It was so enjoyable to read your account of working as wardens on the Norfolk coast. You are a very enterprising couple. Raymond and I found ourselves relating to you as we have taken in turn to be volunteer elected directors of our apartment complex. We have been doing it for 22 years out of the 24 years since it started. We have put in so much work. It is not easy dealing with people.
I am sure you could turn your experiences into a nice little hilarious book and they would also make a very good comedy series. Do you remember the sitcom The Last of the Summer Wine? We have become so despondent with all the bad news that we have been watching some of the British comedies that we had not seen in the past. We really enjoy Bread. It is very funny but very profound.
We could hardly believe what you related about your son and his experience at the Job Centre. What a way to encourage people!
That is about all for now.
Best wishes.
Sylvia
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Hello everyone,
It is a nice surprise to see that quite a lot of people are now viewing again. If you would like to tell us your triple negative breast cancer story, please do not be shy. It would be so interesting to know how recently diagnosed people are coping.
Wishing everyone all the very best and remember that you can get threough this.
Best wishes.
Sylvia xx
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To all, Sylvia, Gill
Well, no surprise after 2 biopsies, but I've been diagnosed with Lung cancer.
I no longer have an Oncologist, since that place told me I was cured haha and I didn't need to come back. So my Primary Doc is going to make the phone calls, to set me up with PET scan and Oncologist at a different place. Oh boy, I was afraid 2024 was going to be difficult. But not this bad.
Poorly-differentiated Pulmonary Adenocarcinoma.
Talk Later, love, Mary
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To Mods
Please see my last post
Thanks!
Mary
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