Calling all triple negative breast cancer patients in the UK
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Hello Sylvia,
I'm glad that we've been able to offer Maryjv some Pointers regarding treatment. Her 'can do' attitude is certainly the right one to have.
I've just had a cancer patient experience survey. I'll complete it and I hope others will do the same - there's a very small chance that it will make a difference.
I'm beginning to wonder if Johnson is deliberately trying to lose the election. He knows that everything he's promised is false and that he'll be found out before many weeks have passed. I wonder if he'll be sued regarding the 40 fictitious new hospitals? Doctors and nurses are very angry. His behaviour regarding the little boy with pneumonia sleeping on the floor at Leeds hospital was breathtaking. This man really doesn't care. He says he will rebuild Leeds Infirmary from top to bottom as soon as he gets brexit done!
I did sign up for Vita magazine, but haven't received my copy yet. The questions from Breast Cancer Now researchers would be of interest to everyone here.
Wet, cold and windy again today.
Keep well wrapped up.
Love,
Gill X
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Hello Gill,
Thank you for your latest post and for the help you have been giving to Maryjv. We seem to be a two member team at the moment so I do hope some of our faithful posters will soon put in an appearance. I am especially concerned about our dear friend Mary from whom we have not heard in a while now. I do hope she is alright and that she is making progress with her arm. I know she is a very busy lady as well.
I would be very interested to know what kind of questions you are being asked in that cancer patient survey.
Let me know what you think of Vita magazine that is now put together by Breast Cancer Care and Breast Cancer Now, that united to form Breast Cancer Now. It is very easy to read.
On page 4 you have Inbox, your letters and emails, and a star letter picked out for which you win a prize.
Pages 6 & 7 has an interesting article with pictures entitled I am getting to know the new me (Carol Zurowski) was diagnosed with breast cancer in 2018. She tell us about getting used to life one year after treatment.
There is a small section here with a notice Breast Cancer Now's Moving Forward book has tips on coping with the physical and emotional changes after treatment. Visit breastcancernow.org/publications or call 0808 800 6000 for more information.
On the research part, he good news is that more and more patients are surviving breast cancer. "Forty years ago only half od women lived five years or more after a diagnosis. Now, it is almost nine in ten".
There is an interesting bit as well about chemotherapy. "Our researchers are working hard to harness new chemotherapies that have not been used before, in a way that is kinder to the people having them. We know there are some chemotherapies that are very effective against cancer cells but are too toxic to be safely given to patients. Doctor Falconer and his team are looking at ways to get around this. One such way is by adding a 'switch' to the drug that causes it to become active only once it encounters breast cancer cells, leaving healthy cells intact...."
There are more details about all this on page 21. It is well worthwhile getting this magazine.
As for Boris Johnson, once he opens his mouth there is no knowing what will come out of it. If he gets elected on a majority I do not think he is going to last long. It is the right-wing press that is directing this General Election. Only The Guardian and the Daily Mirror are not boosting him to the hilt. Yesterday there was a picture of a young baby on the front page of the Daily Mirror, lying in dire straits on a hospital floor like the young boy the day before, and I do not think it got a mention.
The press is too busy demonising Jeremy Corbyn.
That is about all for now.
Let us hope we hear from Mary, Marias, Kath, Helenlouise, adagio and any others that seem to have gone missing. We all need to pull together to give help and support.
Love.
Sylvia xxxx
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Sylvia, Gill and all,
I am distressed, I had written 3 pithy paragraphsto you and then thru my own fault, lost them.
I will send greetings bare-bones here and try again later for more.
Good news: yesterday I saw my orthopedic surgeon for 3-month visit. She was pleased with my progress and declared I would move ahead into strengthening phase of therapy. So, at least 3 more months of therapy, which will bring me to March, which is the month this all started a year ago. Good Grief!!
Greetings to Maryjv, best wishes and you have wonderful women counseling you here. I'm glad you stuck around!
Sylvia and Gill, I love you and hope you are very well. Good luck with big Election!!
Talk to you again soon, Mary
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thank you all, port placement scheduled for Friday...now I prepare for the holidays and chemo to begin soon 🙏
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Hello Mary,
It was so good to see you back on the thread. We do worry about the members of our group when we do not hear from them.
It was good to know that you have made good progress with your arm. It will have been a long time when you finally finish.
You can see that we have another Mary on the thread now going through treatment and Gill and I have been trying to help her all we can.
Tomorrow is the big day here but I think we are all fed up with it and that Brexit has worn us all down and I do wonder whether the election results will solve anything and whether they will really mean anything. Raymond and I will definitely go to vote and it will not be for Boris Johnson!
That is all for now but I hope to post some more information probably at the weekend.
Thinking of you and so glad to have you back.
I saw that Val had posted on TNs to say that she had reached five years since diagnosis. She has also put an excellent quote there, which I hope to copy onto this thread. It is excellent.
All for now.
Love.
Sylvia xxxx
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Hi Maryjv,
So, once the port is in, you're all set to go. Now that you know you're moving forwards, enjoy making your holiday preparations. Try to banish breast cancer to the very deepest corner of your mind.
With love,
Gill X
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Hi all, I have been reading with interest. Welcome to our new TNBC friends. Glad to hear those in the UK are coping with the brexit turmoil if not a tad fed up! I have been watching a Netflix series called the crown. Latest season just finished on the queens jubilee. I note how frustrated the queen was with the government at several times during her reign. I wonder what she’s thinking these days!
Today I got the all clear to travel from my MO with no nasty surprises from a recent CT and PET scan. I did not have the genetic mutation required for the proposed trial. So that was disappointing. My MO went on to explain that the skin metastasis will not be adequate for other possible trials because they are difficult to measure and don’t behave like other solid tumors.
The uptake on the PET confirms activity in the skin and chest area and MO says it will grow and is likely to ulcerated and become difficult to manage. It has started to spot blood and get crusty . He explained that because the area is damaged through radiation and surgery that blood supply is poor and any chemo will not be as effective in that area. Adding to the reason why the skin Met won’t help qualify me for trial. He also explained that a large skin graft with its own blood supply will repair the area and remove the met which is currently another source from which the cancer will spread. So I have been referred to breast surgeon at cancer Centre in Melbourne to look at graft in new year.
But in the interim, we are off to japan. Christmas in Hiroshima and new year in Tokyo. I can believe we are actually finally really truly going!!! It is very exciting. I finish work tomorrow and off until 20/01 so a holiday in another culture and plenty of time to recharge once home. Will try to put cancer on the back burner for a couple of weeks.
Wishing everyone a safe, happy and healthy holiday. Xxx
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Hi Mary,
How frustrating to have your post disappear into thin air. It happens to me from time to time and I long for a save facility.
We've grown so close. You and Sylvia have kept me sane during my many difficult patches and I've come to think of you both as two of my closest friends, which is odd since we've never met. You are the friends I trust with my fear and my sometimes trivial worries, you're never tactless and always full of good advice. It's been such a relief to let the 'stiff upper lip' mask slip in a way that I never would in the real world.
What a long hard slog you've had with your arm. You must be very close friends with your physio by now and on Christmas card terms at the very least. Fingers crossed that you'll have the all clear by March, or very soon after. Naturally, we'll all expect to be invited to your virtual celebration party.
My physical health is good, mental health questionable after the truly horrible run up to the General Election. Boris Johnson has divided the country and I'm not sure if the rift can be healed. I'm off to vote now and tonight they'll be an all night results watch in the village hall. The bar will be open!
I wonder if you'll be singing at the Christmas Mass this year? I'm off to a candlelight carol service at the Catholic Cathedral next Thursday - I've promised to mime.
Keep well.
Much love,
Gill X
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thank you Gill! Helen Loise-glad you got the ok to go and enjoy Tokyo
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hello to all,
SYLVIA : Christmas is just 2 weeks away. Everyone is running around as if we didn't know it was coming! I am sad it has all become so commercialized, the rebel in me refuses to watch ads on TV and procrastinates until almost too late. Add to that the fact that I am missing some physical mobility and strength and this weekend I am determined to make progress with some gifts, lights and wreaths.
It is too bad but I also think the Brexit mess will not be simply settled, things just seem to get more muddled. I hope you and Raymond had good report from the doctor visit, it sounded as if it was hard to get appointment. I was supposed to set up 2 future appointments when I was at orthopedic doc, but computers were down, and everything grinds to a halt. I still don't have them set.
GILL: I also feel such an attachment to you and Sylvia, I am always amazed and thankful that we found such a feeling of friendship and support online. My hope is to come to UK next year, I have never been there, would love to see some sights and then my dream goes on, for us all to get together for a cup of tea or whatever.
We do have a Mass on Christmas, it was up-in-the-air for a bit but the priest relented. He was reluctant because he has 4 parishes and couldn't see why we didn't just go elsewhere. So now we are practicing madly, our young organist has some ambitious song choices and she is ill, my throat is very scratchy and it frankly sounds a mess at the moment. Maybe we will have divine intervention!
HELEN LOUISE: I see you are still facing some challenges, and I am so glad you will escape and take your long-awaited trip. What a fabulous trip to look forward to, I have only seen pictures but Japan looks very beautiful.
MARYJV: and you are just beginning the journey through. As you can see, we have all been on the journey and are here to talk about it; my main devilment in the last year has been my shoulder surgery. When I was first diagnosed TNBC in 2014, I was sure I would keel over any day. Not so, I have lived enough to complain about shoulder pain, which is preferable to BC! I'm glad you get to have Christmas before chemo.
ADAGIO, MARIAS, KATH, HANIEH, greetings to all of you and hoping you are well. Also our friends in Philippines, JAGS, and LOU. CONGRATULATIONS TO VAL for 5 years and celebrating!
Talk to you all soon, love, Mary
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hi everyone just touch base to make sure everyone ok and to say hi and hang in there to anyone new. I’ve been frantic in try to wind up work and uni and still have dark days but thankfully not as many.
The drought is still very bad here and dust storms everywhere. It’s extremely warm and temps of 46 Celsius which is about 115 Fahrenheit expected next week. My grandchildren come next week and I’m very excited. We expect to have Chrissy by the pool to keep cool. Have a great one everyone !
Much love
Kath
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Maryna - yes - I agree about the commercialization of Christmas - I also rebel and can hardly stand having to listen to the Christmas jingle jangle. Each year my goal is to make our Christmas more simple - less gifts - and more time with family and being grateful to have a family with whom to spend time at the Christmas season. Glad your shoulder is finally on the mend - yeah!
Gill - I am so glad that you and Maryna (Mary) and Sylvia have bonded in a very meaningful way - it is rather odd that we look on our virtual friends as some of our best, but I totally get it. And I sure hope that Maryna will get to visit you and Sylvia in England next year. Life with Boris is going to be crazy in the UK.
Sylvia - so glad that you are still with - you are truly the glue that holds us all together. I wish you and Raymond a Merry Christmas and hope you get over the election results - the whole world is going crazy and times are changing dramatically. I think we are all in for a roller coaster ride economically and politically.
Helen Louise - how wonderful that you are going to Japan - you will have a wonderful time experiencing a completely different culture - just try and forget about cancer and enter in to the whole experience and enjoy.
Kath - I have a friend in Sydney who keeps me informed about the smoke and the heat in your country - unimagineable for us here in Canada. Hope you have a wonderful Christmas with your family.
To all the new people here on the forum - wishing you the best with your treatments and remember to look ahead - things will get better.
So grateful for each and every one of you.
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Hello Sylvia,
Well, we were right and I wish it could have been otherwise. Five more years of watching the destruction of our welfare system, our justice system, our education system and our beloved NHS. I've never experienced an election based on so many lies. We've also lost so many excellent MPs, Anna Soubry and Dominic Grieve to name but two. I feel so sad for those without incomes, the disabled, the homeless and the disenfranchised. Anyone who believes that the bunch of toffs in office actually care about them are sadly mistaken.
I expect you saw the news regarding Anastrozole halving the risk of breast cancer. I do wish the media would take on board the simple fact that not all breast cancers are oestrogen fed. Most are, but many are not. Such headlines fuel the public's misunderstanding of breast cancer and, certainly in by case, has led to some very tactless comments.
The NHS questionnaire I've been asked to complete wants to know how many times I needed to visit my GP about the health problem caused by cancer, how did I feel about the way I was told I had cancer, how were treatment options explained (they weren't), if a family member was able to speak to a doctor, did hospital staff ask me what name I preferred to be called by and other 'touchy freely stuff'. It does not address the main problem of cancer treatment which is the very long wait for surgery and operations being cancelled.
Weather here is cold and dull, the wind has dropped though.
Enjoy your weekend.
Much love,
Gill X
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Hello Helenlouise,
I was glad to know that you have been reading the thread with interest.
It is good news that you got the all clear to travel from your oncologist and that you had no nasty surprises from a recent CT scan and PET scan.
To me it seems to be good news that you do not have the genetic mutation. That is something less to worry about and not being on a trial is also something less to worry about.
I do hope that you will be able to resolve the problem in the skin and chest area. Is there any way to stop the ulceration?
How did it happen that the radiation and surgery caused such a problem? Why is the blood supply poor and why will chemotherapy not help?
Do you think you were given too much radiation? I ask this because I had three weeks of radiation plus boosters (five days a week) and did not have any problems at all. I did not even have any redness at all. I did apply aloe vera organic gel throughout the radiotherapy. It is a very effective gel.
I do hope that a large skin graft with its own blood supply will repair the area and remove the met which is currently another source from which the cancer may spread. I do hope you get a quick referral for this and that it will solve the problem.
I do hope you can put all of this out of your mind and enjoy your trip. Try to send some photographs if you have the time.
Enjoy your holiday. We shall be thinking of you.
Love.
Sylvia xxxx
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Hello Mary,
It is the same here with Christmas madness. Raymond and I do not make much of Christmas, because it is too commercialised. We stay by ourselves because we do not have mush family left.
It has finally happened and as unbelievable as I find it, Boris Johnson has won the General Election. I do not believe he is going to be good for our country but he has performed a con trick on ordinary people who are fed up with Brexit. The deal that he has got is apparently worse than the one that Theresa May had and we shall not really be exiting, but he will declare it so and the masses will believe him. He did not really get a majority either, not in real democratic terms. Watch this space!
Everything went well at the doctor's and it did take a long time to see her. We quite like her and I think she knows that we have minds of out own and that we cannot be bamboozled.
I am really afraid for the future of the NHS and for the UK to be in the hands of a privileged elite.
I see there is another email from Chris Woollams but I have not had time to look at it.
That is about all for now. It is Friday evening and I am hoping to have a bit more relaxation during the weekend.
Take care.
Love.
Sylvia xxxx
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Hello Kath,
It is always good to hear from you and it is good that you pop in to say hello and to encourage others. I do hope you have managed to wind up your work and studies and that you will have some relaxation time during the Christmas break.
We still get news about the dust storms and the heat. Lately the headlines have been all about the volcanic eruption in New Zealand. We also have non-stop reporting on Boris Johnson and what is going to happen now. I cannot see what there is to like about him. If it is not Brexit it is about Donald Trump and impeachment.
Enjoy Christmas and enjoy your time with your grandchildren.
Love and best wishes.
Sylvia xxxx
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Hello adagio, it is always good to hear from you. Thank you for your kind words.
I do feel a great responsibility towards this thread and I just feel I want to help people get through this breast cancer journey.
I do feel sad about the election result. I did support Brexit first of all because I felt we need to control our population, but I always had reservations about handing the UK back to a band of elitists who have no understanding of everyday life and I do not think we have a real democracy. I now think that the world is very mad, dangerous, unpredictable and that we need to stay part of Europe. The way things have turned out today we could easily see Scotland going independent and Northern Ireland rejoining the Republic of Ireland, where it should morally be. I certainly do not think Boris Johnson will bring the country together. I feel sad and disappointed about the Labour Party.
Take care and enjoy the festive season.
Keep well and keep happy.
Love.
Sylvia xxxx
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Hello Gill,
I back all that you say. This is a bad day for this country and I do wonder where we are going.
I do not take much notice of the headlines about drugs that halve the risk of breast cancer or any other headlines that can be misleading. I am well aware of the nasty side effects of anti-hormonal drugs of whatever kind and as you say not all cancers are hormonal. I think all we can do is have a healthy lifestyle and hope for the best.
I agree that the questionnaire you mentioned is not that useful. It just enables them to tick some boxes. I told the receptionist at our GP surgery that Raymond and I were not tick the boxes kind of people and that on the rare occasions that we came to the doctor's that we wanted a meaningful appointment with our doctor!
The weather here is wet, cold and windy and I think we are all fed up with it.
Thinking of you.
Love.
Sylvia xxxx
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Thank you everyone for your good wishes. It is incredible how you all find time to make mention of everyone and especially Sylvia who replies to everyone’s post xxx
Yes will enjoy japan and post pictures most likely when I return.
To answer your questions Sylvia,
Yes, my treatment has made the area problematic. I have has two round (60 doses of radiation) to the area. In my case we opted for the second course post BMX. A second round to the same are is not normally done. Maybe a mistake. I believe when the surgeon took the biopsy she cut into an underlying seroma (was evidenced on ultrasound pre-op). The wound would not close and then took 16 weeks to produce a thin layer of skin, no flesh in the wound bed. On the edge of this area is another nodule that is growing and starting to ulcerate. In addition, the area around the wound adhered to my chest wall. So without a good layer of flesh it has poor blood supply. I am very skeptical about a skin graft. Will have to wait to hear what the specialist breast surgeon has to say. That won’t happen until (hopefully early) in the new year.
So putting all that aside (I really will try my hardest) - off to Japan
Happy festive season my dear TNBC friends: Mary, Gill, Adagio, Kath, Maryjv, Marias and dear Sylvia xxx
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Hi Helen,
I'm really pleased that you're fulfilling your dream of visiting Japan. I hope it's everything you hoped for, and more. Enjoy all that lovely Japanese food and hospitality. Cancer is officially on hold and back in its box. The skin graft option will, after all, still be there when you return home.
Wishing you and all those you love a very happy Christmas and a peaceful New year.
Enjoy every minute.
Much love,
Gill X
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Hi Maryjv,
I hope all went well with your port fitting yesterday. Ports are much more reliable than PICC lines with a negligible risk of infection. I seem to remember people telling me that they could be quite painful at first, but this wears off.
Enjoy getting ready for Christmas.
Much love,
Gill x
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Happy holidays everyone! Thank you Gill for checking in..very sore today and headache but other wise ok...will share this story: I had to be sedated and when I woke up I was sobbing hysterically to my husband...I kept apologizing to him and kept telling him this isn’t fair to him and my daughter...I am laughing now but I guess these were supressed thoughts I had inside. Next week I will visit the oncologist so hoping the insurance approval is completed and chemo soon!0
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Hi Adagio,
I think the close connection with people here isn't just about us all being in the same boat either. It's genuine friendship. We all seem to worry if someone disappears from the thread for a while and breathe a huge sigh of relief when they call back in.
It would be fun to meet up with friends on the thread. I used to live in South Devon, about 40 miles from where Sylvia lives. My daughter was born there, but we left when she was 6 months old. I think Mary is planning to visit both Devon and Cornwall. They are quite different and there's a bit of rivalry between the two.
Completely agree with you about Christmas. In England the whole thing has kicked off by October and then disappears on Boxing day when the shops reopen for sales.
Life with Boris Johnson at the helm is certainly going to be a roller coaster ride, but without the fun. Actually, it'll be more like a circus with Boris as clown in chief.
Have a happy and peaceful Christmas.
Take care,
Much love,
Gill x
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Hi Kath,
While I'm utterly fed up with this cold wet weather, I really don't envy you those temperatures. Christmas by the pool sounds good though. You've earned some relaxation time after all the rush.
I do hope the drought is soon over, dust storms must take a toll on health, especially for those with breathing problems.
Have a lovely Christmas with your grandchildren.
Much love,
Gill x
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Hello Sylvia,
Agree with your views on box ticking at GP surgeries. I think the very short appointment time allowed by practice managers is counterproductive. If a sick patient isn't listened to and isn't examined or diagnosed/referred, he or she will simply keep coming back. Far quicker and safer to offer the patient a sensible amount of time at their first appointment. Health centres and hospitals will soon be functioning better than they have for many years. Thousands of new, fully trained gps, hospital doctors and nurses are all ready to go. Apparently.
I hope you and Raymond did manage to get a meaningful appointment with your GP and that all will be well.
I never did receive my copy of Vita magazine, though I applied to be on the mailing list weeks ago.
The weather is very good in Norfolk today, bright and sunny. I hope some of it will find its way to Exmouth soon.
Keep well.
Much love,
Gill X
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Hi Mary,
I hope your dream comes true and you find yourself in England next year. Devon has a beautiful green landscape full of meandering streams and quaint sleepy villages. The coast, away from the traditional seaside towns, is equally lovely with plenty of golden sandy beaches. Cornwall is perhaps, more austere, with hidden coves and beaches and amazing clifftop views. It has more beaches than anywhere else in the UK. Cornwall prides itself on its difference and even has an unofficial National Anthem, 'Trelawny' which is sometimes sung in the Cornish language. Cream teas are compulsory, but remember that in Devon the clotted cream goes on before the jam while the jam goes on first in Cornwall.
Pleased that your priest is allowing a local Christmas Mass, at least for another year. Not good to hear that your organist is sick and you have a scratchy throat. I think this calls for the crossing of fingers and lots of prayers and candles. I seem to remember that there were problems last Christmas too and all was well in the end. Good luck!
Keep warm.
Much love,
Gill X
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Hi Maryjv,
So, that's over with. Soon you'll be saying that about chemotherapy too. It's surprising how quickly the time goes. I guess we all concentrate so hard on getting through it, that the days merge into one as we focus on the next chemo cycle.
Well, the sedation certainly forced your feelings out into the open. Probably did you a lot of good. The awful thing about triple negative breast cancer is that there's absolutely nothing any of us could have done to avoid it. I have a triple negative metaplastic cancer and no one even knows what it is. Might be a damaged stem cell, might not be. So everyone here has a weird, stupid, no blame cancer.
Starting treatment in January means you'll be out by Summer. So much better than the other way around.
Hope the port stops hurting soon. I know that it takes a while to settle down. Don't forget to get some Emla cream before your first infusion.
Keep on moving forward.
Happy holiday.
Much love,
Gill X
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thank you Gill! Back at work today and it is feeling better the more I move around! Happy holidays...grateful to have found all of you ❤️
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Hello Sylvia,
On the front page of the Guardian online this afternoon, The Norfolk and Norwich University Hospital has declared a major internal incident. No beds and 35 people needing to be admitted as an emergency. The Trust has told doctors to go for the least unsafe option for patients as optimal treatments can no longer be carried out, even in emergencies. Targets are no longer being met for cancer treatments, including surgery. What an absolutely desperate situation. Johnson has put the NHS at the forefront of his priorities, according to the Queen's speech and today's debate. However, not one penny has been offered to our hospital which is weighed down with a PFI debt which grows bigger week on week. My heart goes out to anyone who needs treatment here in the foreseeable future.
Very quiet on the thread, understandable just before Christmas. Hope everyone's well.
Take care Sylvia.
Love,
Gill X
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Hello Gill,
Thank you for your latest post and thank you for keeping the thread going this week.
It is truly appalling what is happening in the Norfolk and Norwich University Hospital and that is what nine years of Conservative cuts have done to this country and yet the people have given them an overwhelming majority in the General Election. When will these people get the message that the Conservatives are for the few and could not care less about the NHS, State schools or State anything!
Today the so-called Brexit deal went through in Parliament, but already we are hearing that important parts have been left out.
The People's Government, my foot!
I have been very busy with one thing and another but I am hoping that things will calm down a bit now.
It is indeed very quiet on the thread, but Christmas madness has descended on people. Raymond and I are trying to avoid it all.
We have had so much rain that there have been huge puddles in the roads.
Take care.
Love.
Sylvia xxxx
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