Calling all triple negative breast cancer patients in the UK
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Hello Sylvia,
I'm taking a few days off for Christmas but before I go I want to thank you for all the information you have provided for us during this very challenging year. This, despite 2020 getting off to a dreadful start for Raymond and yourself. Thank heavens Raymond's surgery took place before Covid hit our hospitals, although medical services were certainly being curtailed as he worked towards recovery.
Congratulations on reaching 15 years and 6 months since your diagnosis. I know that people visit TNBC threads specifically to look at this 'survival' information. When I was first diagnosed the question of how long triple negative patients were likely to live was at the very forefront of my concerns. Reading through the details You, Mary, adagio and others provided helped me to stop panicking and regain a sense of perspective. It also helped that Susie was so down to earth about just getting on with her treatment. There were other longer term survivors who dropped in occasionally. They all helped.
I do hope our friends on the thread will call in to give us an update before Christmas or the New Year. I wonder what's happening in their lives when we don't hear from them for a while.
Like you, I hope that adagio is making a good recovery and well enough to be allowed home for Christmas.
It's been a difficult year on the thread, Kath working all hours to keep the pandemic under control in her health region, Mary becoming so ill following a tick bite, adagio needing complex open heart surgery and the final messages we had from Marias. Good things happened too, as far as we know, no one contracted Covid, Mary's second shoulder surgery was successful, Helenlouise turned a corner and is doing so well after going through so much and Raymond is well again. I've probably missed some of the earlier highs and lows and I've certainly missed out a lot of names.
Have a peaceful, enjoyable and safe Christmas Sylvia and of course Raymond.
Love and best wishes,
Gill xxx
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Merry Christmas, Happy holidays, Happy Holy Days to all you wonderful women, thank you Sylvia and Gill and every one for keeping this thread alive. Congrats Sylvia,,abosoluty fantastic. I am doing well, hoping for a white Christmas for the grandkids.
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Thanks Gamb, your post has reminded me that I'd forgotten to add my greetings to everyone.
May each one of you enjoy a peaceful Christmas and find something to celebrate in the days ahead. As for 2021, well it can take care of itself. Let's just focus on what we have today.
Gamb, I love snow, so do my grandchildren, but a white Christmas isn't common in England any more. Fingers crossed for snow where you are - snowy pictures always welcome.
Gill xxx
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Happy Holidays everyone!
Just wanted to take the opportunity to wish you all a very Merry Christmas and to say thank you to each and everyone of you. The amount of information and support that is provided by everyone on this site is immeasurable. I wish everyone all the best for the New Year!
Our holidays are will certainly be different this year, but I feel it is the right thing to do. We will drop of Christmas gifts to our grandchildren and there will be no gathering for a Christmas dinner. It truly is a disappointing decision. There won't be any snow here this Christmas either. Temperatures have been above average for the last month. Although we had a blast of frigid weather come through last night. It just has to be what it will be this year, for all of the extraordinary situations in the world.
My hope and prayers are with all of you wonderful women and men that contribute to this thread and to those who seek to find comfort and support here. My goodness that alone is the best gift given!
Merry Christmas- Paula.
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Hello Gill,
Thank you for your latest post and thank you for your very kind words.
I was glad to know that on the thread we were able to help you when you were first diagnosed. You are now doing that same work for others and you are doing it so very well. I do miss Mary and adagio on the thread. They have both been very strong posters and a great help. I am wondering whether adagio has been allowed home by now. I think that doctors do like to get you up and walking quite quickly after these major surgeries. Raymond was operated on one Friday and back home the next. I think valve replacement may require a bit longer in hospital. As for Mary, I do wonder what has happened to her. I do hope she is alright and is not having any health problems. She seems not to have been able to post regularly since acquiring her puppy. I do miss Susie on the thread as well, because, as you say, she was so down to earth about getting on with her treatment.
I do think that there is too much scaremongering going on about those who have breast cancer with triple negative receptors and this has to be ignored. I have always been positive about being triple negative.
Like you, I hope that some of our friends on the thread will try to pop in to say hello before Christmas or the New Year. We do wonder what is happening when we do not hear from them.
It has been a very difficult year on the thread as we have all been preoccupied with Covid 19. This seems to be getting worse rather than better. It was good to read on your post the things that were positive with our friends.
I must admit that for me this has been a very bad year. The good thing is that Raymond has made progress but the surgery has taken a big toll on him and there has been very little support from our GP etc. because of Covid. I am now wondering about my cousin. I had a call today from one of the doctors, updating me on their plans. They are thinking of getting ready to discharge him, but I do not think he is ready to go back to his flat, even with arranged help. He has not had Covid badly but he still has the serious infections and has nine more days to go to complete the six weeks of antibiotics. I spoke to him straight after talking to the doctor and could tell he is still very confused. I hope it is not permanent.
That is all for now.
Enjoy your Christmas Day. Best wishes to you and Michael.
Love.
Sylvia xxxx
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Hello Gamb,
It was nice to see you back on the thread and thank you for your very kind words.
When you have time, update us on how you are getting on but I am so glad to read you are doing well.
Happy Christmas and a healthy Happy New Year.
Love.
Sylvia xxxx
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Hello Paula,
Thank you so much for popping in to say hello and thank you for your kind words.
Enjoy your Christmas Day even if it is restricted by Covid 19.
I do hope you are keeping well.
Love.
Sylvia xxxx
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Hello everyone,
I am going to try to finish off the article Breast cancer and saying No to Milk.
"'A breast-friendly diet' according to Breast Cancer UK, is one which 'is low in calories and high in fruit and non-starchy vegetables, and includes little or no processed meat'. "
It also says to avoid alcohol, because it alone causes an estimated 4,400 cases of breast cancer each year.
It recommends the Mediterranean diet or what we often call the Rainbow Diet.
I cannot see what is wrong with some starchy vegetables, especially in Winter. I have read that the body needs root vegetables in cold weather. I believe in a little of everything in moderation.
Maintain a healthy weight and do not get obese.
Consume good fats in moderate quantities. I use extra virgin olive oil and get healthy fat from wild oily fish, such as salmon.
Avoid dairy milk as it is believed to be a notable breast cancer risk, according to certain research, which, interestingly found no increased risk with cheese or yoghurt. I suppose you have to make up your own mind. I avoid all cow's dairy. It could be that this research found cheese and yoghurt not to be a risk and this could be because of the fact that they are fermented products. I use unsweetened soya milk (the Alpro brand) and Sojade organic soya yoghurt. From time to time I may have a little fresh goats cheese.
According to the article, "The Mediterranean diet shine for women is the low level of dairy products in this diet".
"Published in the International Journal of Epidemiology, even less than a cup a day of milk caused a steep rise in risk. Led by Gary E Fraser, a cup of day was found to cause a 50% rise in risk, with up to 80% risk when consuming between 2 and 3 cups a day".
Apparently they were looking for an association between soya milk and breast cancer and found none.
Remember, what I always say, let your food be your medicine and let your medicine be your food.
Finally, you might find the following helpful.
Signs and Symptoms of Breast Cancer include:
A lump or swelling noticeable, either by sight or touch, in the breast, upper chest, or armpit.
A change in skin tone, e.g. dimpling or puckering.
A change in colour, making the breast look red or inflamed.
A change to the nipple, where it might have become inverted (pulled in).
A rash or crusting around the nipple.
Unusual liquid discharge from either nipple.
A change in the size or shape of the breast.
REMEMBER.
Frequent self-conducted breast exams are crucial in maintaining awareness of any change to breasts. The sooner breast cancer is diagnosed, the more chance of survival.
That is all for now.
Wishing everyone a Happy Christmas and a Healthy New Year.
Many thanks to Gill, Mary, adagio, Kath, Helenlouise for their great effort this year.
Many thanks to those who pop in from time to time to let us know how they are and that they have not forgotten us. Anyone who has any news of Hanieh and Marias, please let us know.
Best wishes to all.
Love.
Sylvia xxxx
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Love.
Sylvia xxxx
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Christmas sunrise over Exmouth
Seasons Greetings
Sylvia xxxx
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Breathtakingly beautiful.
Merry Christmas,
Gill xxx
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happy Christmas to you all,
May it be merry and safe xx
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Hello all, we got about a foot of snow, so grandkids have a white Xmas, alas nana is snow bound, roads are bad so no traveling for me to see them. But I'm not alone, 5hat is my dog , Star, she is my constant companion. Her brother, Aries the cat is off into the snow somewhere...lol Merry Christmas
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Hello Gamb,
A beautiful winter wonderland for Christmas. Sad that your roads are unpassable though. Glad that you have Star to keep you company and perhaps Aries when he gets bored with playing in the snow.
Gill xxx
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Hello Sylvia and all here,
Belated Merry Christmas! It's almost time to see out this unfortunate year and welcome another, for good or ill and probably both.
I usually have a quite celebratory Christmas with get-togethers on the Eve and the Day. Eating, drinking and exchanging gifts are the pastimes, as well as playing games at some of them and others are quieter. This year I started December by thinking that probably some of these get-togethers would be cancelled because of Covid, but it turned out none of them were cancelled. So I busied myself with finding gifts for the little ones and some of the big ones, and saw most of my family and some friends. And I put up all the Christmas decorations I could manage. I couldn't muscle my bigger tree up the stairs (I tried), and so I put up a small lighted metal tree-shaped object, and it looked okay in my window. So far I have not suffered any repercussions for my party-going, I hope that continues.
I am invited to a very large wedding reception tomorrow, on New Year's Eve. I am not going due to a very dicey weather forecast, and the fact that there is a lot of Covid out in the area and there will probably be hundreds of people there. I think the dog and I will be home inside.
We keep hearing here about a new variant of Covid that is out and about in UK and it has probably made its' way here by now, I read back on your posts and hadn't seen anything about that. I am such a cynic these days that I thought it was possible that it was a ploy to make us all stay home for Christmas. I just don't trust most of the media, and many of our "experts", in case you couldn't tell!
ADAGIO have you had the heart valve surgery that was cancelled and then re-scheduled? I do hope it all went well, it sounds quite serious and you will need a lot of rest to mend. My thoughts and prayers go with you.
HELENLOUISE We made our plans this week for our trip Down Under! It is a year away, seems unbelievably far off but I hope things are doable by then. I bought trip insurance so can get a refund as late as October. It looks like most of the trip is in New Zealand, we fly into Sydney, or is it Melbourne, and spend a few days, and then our trip home is out of Auckland. I do not look forward to the flight, but it is the price one pays.
NANCYJGH welcome here, and I am glad that coming here helps you. I find it interesting that the Radiologist told you about this forum, I wonder if she posts on it, or how she heard about it.
PAULA I was sorry to read that you are feeling ill, and worried. There is so much to be worried about these days, it doesn't take much to push us over to the Dark Side. The BC diagnosis we had is never far from our minds. Add to that the fact that we are older, and our balance isn't as good and things hurt that didn't once upon a time. To be truthful, I can't remember what it was like to be pain-free. I was also a ibuprofen fan, but had to give it up when my puppy was small. His puppy teeth and claws and the bumps and falls I suffered because of him showed me that ibuprofen does make one bleed more. Thankfully those small puppy days are over, but I get a lot of sinus headaches; when the weather changes I feel it there. I take Tylenol sometimes, but don't find it very effective. I remember once complaining to my Oncologist that my back was really paining me, she was very attentive and asked me what the pain was like, did it hurt all the time, did it keep me from sleeping? I said no, and it comes and goes. She smiled and said That is not cancer pain, you are okay. I also have the degenerative changes in my back. As to weather, I see that you are having some nasty weather with more coming tomorrow, have a Happy and Safe New Year!
GAMB your snowy pics are beautiful, where do you live? SYLVIA, you also posted beautiful pic, thank you!
SYLVIA AND GILL You are the stalwart posters, and we would be lost without you. I am sorry for my long absences, life just seems to be flying by and I am trying to hang on. Do you know this is the only place I am comfortable talking about my Breast Cancer experience? It's as if I try to deny it in my day-to-day life. I was asked if I would speak of my experience at a Fund-Raiser a couple of years ago, and I said No. The thought of it made me very queasy, I'm not sure what that's all about. In October, Breast Cancer month, there are always many articles in local papers about women who suffered BC. Most of them Stage 0, had mastectomy, and reconstruction and no treatment. I think the Chemotherapy adds another element to this, it beats us and batters us and leaves us with scars, some more than others. Perhaps like War, and many War veterans don't like talking about their battles. We pay a price for our lives, and it leaves us changed. I am really rambling today, I hope you don't mind, and I hope we all have a Happy New Year, with good health, and few worries. And to quote Tiny Tim, God bless us every One!
Love, Mary
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Hello Mary,
What a pleasant surprise when I was checking the thread this evening to find your post. Welcome back. I have missed you very much and I know that Gill has as well. I did check recently to see when you last posted and saw that it was December 2nd, so I did wonder whether we would hear from you again. i have been meaning to send you a PM but I have had a very busy time lately over a very unwell cousin in hospital for six weeks now. I am so glad to know that you are alright.
I shall try to respond to your post in ore detail tomorrow. I am sure others on the thread will be in touch as well.
I am intrigued by your mention of Nancy JGH as it does not ring a bell. I do remember Nancy from Manitoba in Western Canada but I think she was was Nancy56 and we have not heard from her in quite a while. I would think that adagio is still very much recovering. There will be at least six months of recovery if all has gone well.
That is all for tonight.
Love.
Sylvia xxxx
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Hello Sylvia,
Very cold and frosty this morning and feels like Winter at last. It's costing us a fortune in logs as the wood burner is full on.
Like you, I was very pleased to hear from Mary, I'd begun to worry that she might have caught Covid as I remember that she had cases nearby. It's two weeks since adagio's heart surgery, I do hope all is well, as you mentioned to Mary, recovery will take many months. I wonder if Jags will call in and let us know how New Delhi is coping with Covid, I don't know if the new variant has reached India yet or which vaccine is planned.
I emailed my surgery to ask whether I should still be in the NHS 'extremely vulnerable' group. My GP emailed back to assure me that I should. I know that GPs are snowed under at the moment, so now isn't the time to ask, but I can't help wondering why I fall into this category. Perhaps having sepsis so often and failing to respond to filgrastim after my final chemotherapy might explain? Might this have caused a longer term problem? However, I have a friend in London who completed her chemotherapy for triple negative breast cancer at about the same time as me and she's also considered to be extremely vulnerable.
The Health Secretary promised that 4 million doses of Covid vaccine would have been given to people by the end of the year. We aren't close to one million yet and there's only half a million doses left in the country. Apparently the vaccine has been ordered, but isn't yet available. The Oxford vaccine can be stored much more easily and is much cheaper, so I'm hoping Mr Hancock might be able to get this one thing right, though I'm probably being over optimistic.
I wonder if your cousin did manage to stay in hospital? He didn't appear to be nearly well enough to cope by himself at home. The NHS used to to send people who were recovering from illness or surgery to convalescent homes until they were strong enough to go home. Now there is nothing, hospitals are desperate to get the beds back and older patients who are unable to cope are shunted off into residential care.
Being in tier 4 means that all is very quiet in the village. It's depressing that we can't all get together in the village hall to see in the New Year as we usually do. Let's hope that 2021 will be much happier for us all.
Happy New Year to you and Raymond.
With love and best wishes,
Gill xxx
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Hi Mary,
The wanderer returns! Good to hear from you. You're becoming our very own prodigal daughter.
The Christmas parties and gatherings must have been fun, but please be careful. This new variant of Covid is reputed to be even more infectious and has caused most of England to be placed under tier 4 restrictions. Places of worship remain open, but restaurants, hair salons, all shops except food shops are closed and mixing with anyone outside one's own household is banned. We are allowed out for daily exercise, for essential grocery shopping, medical appointments and work that cannot be done from home. Hospitals are full of Covid patients and cancer surgery is once again on hold in some parts of England.
I wouldn't have wanted to give a talk on my cancer experience either. You really have to have had it to understand the emotional crisis we go through both at the time and months, years, often a whole lifetime after treatment. Chemotherapy wrecks so many of us, it isn't temporary it's for life. I can't really be bothered explaining to 'outsiders' any more and I've no time for the fluffy pink sisterhood brigade. Rant over!
Yes, best not to lug a heavy Christmas tree upstairs for the foreseeable! Small metal trees are absolutely fine and definitely safer. Our tree, downstairs, is covered in coloured lights, tinsel, the whole works, not my usual tasteful (?) effort at all. I think reaching the end of this horrible year calls for colour and plenty of it.
Enjoy your quiet New Year's Eve at home with the dog.
Keep safe and well.
Happy New Year!
Love,
Gill xxx
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Hello everyone,
Wishing you all a happy, safe and peaceful New Year.
Gill X
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Happy New Year to everyone, wishing us all comfort and peace.
Mary I live in Southeast Kentucky, between to big beautiful mountains.
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Hello Mary,
Thank you for your latest post. It seems that in your state the rules governing behaviour during the Covid 19 pandemic are not that strict. The rules about how many people can gather inside or outside and how many can attend weddings and funerals are pretty strict, but any gathering will spread the disease, all the more so that you can be asymptomatic and so spreading the virus without knowing it. Most people here seem to be good about keeping to the rules (about 80%) but 20% not keeping to them is enough to create chaos. With the new variant it is especially important to avoid gatherings.
We are told that the new variant started here in the UK, but who really knows the truth because again of the asymptomatic side of this. Variants can pop up anywhere in the world and who knows how many variants there really are?
We shall have to wait and see how the three different vaccines that now exist help with the virus. It has been made clear by the government here that the vaccines will (so they say) help people who get infected are not so seriously ill that they have to be hospitalised. It is not a cure but people seem to be reacting to it as if it were.
Here in the UK the government is already messing up with the vaccine by deciding not to obey the instructions of how it should be used. It was stated quite clearly that you need two doses, three weeks apart and that the second dose does not give protection for another seven days. Our government has decided that they will delay the second dose until twelve weeks later, in order to give more people the first dose. The truth appears to be that they do not have enough vaccine to start with. It is just like PPEs and test equipment.
The present government is pompous and arrogant and keeps changing its mind as well as the rules. People are confused!
I do hope you will have a healthy New Year and that 2021 will bring you many days of enjoyment.
I do understand how you need to get on with your life and put breast cancer into some dark corner. I remember saying, when I first started the thread, this is what the newly diagnosed needed to do as time went by. We must not let breast cancer possess us.
We do need posters otherwise the thread will disappear. We do need you here, Mary, and you have played a very important part on the thread and in our group.
You are quite right about the dimension that chemotherapy adds to a breast cancer journey. It is a very challenging time. If you can do without it, it makes the journey shorter and will avoid all sorts of side effects, so if you can get through breast cancer without it so much the better. However, we must not underestimate the dangers of radiotherapy. Patients find it easier after chemotherapy because it is quite quick and short, but it is nevertheless dangerous and also has side effects. Not to have to go through both is good.
To be stage 0 and to have a mastectomy and then reconstruction seems to be a bit drastic to me. Surely with stage 0 a lumpectomy would be sufficient. We each have to make our own choices. Looking back to my own diagnosis in June 2005 and if I had been told that I was stage 0, I think I would have had serious reservations about a mastectomy. I am wondering as well what is meant by stage 0. Are we talking about DCIS (ductal carcinoma in situ).
I remember discussions about DCIS and whether it was a pre-cancerous situation and best left alone. A friend of mine had DCIS years ago and she has not developed breast cancer.
Well, here I am Mary, New Year's Day and still dedicated to the thread and hoping it still serves a purpose. It is sad that we are quite a small group of posters, but there is so much more information now so I can understand that in a way. What we can still offer is comfort, understanding and reassurance. Only those that have been through a breast cancer journey really understand what we all go through. We are much more than a breast cancer thread. We talk about so many other things as well, which helps to take our minds off the cancer. This year there has been so much discussion about Covid 19, which affects everyone. We have also been talking about heart surgery and I know Raymond was very much moved by all the kind words on the thread. I know we are all waiting to hear from our friend adagio and to know that she is recovering well.
That is all for now.
Love and best wishes.
Sylvia xxxx
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Hello everyone,
I just wanted to wish all of you a very Happy and Healthy New Year and let us hope that 2021 will be a more relaxing one to all of us.
Special best wishes to Gill, Mary, adagio, Kath, Helenlouise, Jags56 (I am still drinking green Tulsi tea (Holy basil)), Paula and Gamb and anyone else I may have forgotten.
Special wishes as well to those who pop back from time to time, Peter and Liz, InspiredbyDolce, and other I may have missed.
Best wishes to all.
Sylvia xxxx
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Hello Gill,
Thank you for your latest post and thank you for the huge contribution you have made to the thread.
As you say, it is good to have Mary back on the thread and to know that she is alright. We now need some news of how adagio is doing. I know from all that I have read from the heart and valve operations that they like to get you out of bed quickly and get you walking.
Raymond has not heard anything from our GP about the new vaccine, even though he is in the age group that is supposed to be given priority and has had open heart surgery in the last year.
I would think that you, Gill, would be a priority for the vaccine and for being in a vulnerable group because of your breast cancer and how ill you were.
We all know that surgery can cause lymphoedema and I remember talking about a book I had read, which also mentioned that the taxane drugs could cause it, Let's talk Lymphoedema.
I remember when I had the malignant mole on the same arm as the surgery, had to have two lots of surgery to clear it and how I was given a box of antibiotics in case I had any problems with cellulitis. Fortunately I did not have any.
I have certainly not been called for any vaccine or anything else.
We all know the possible long term side effects of our breast cancer and we know problems such as neuropathy and lymphoedema are not curable but are manageable.
I have no confidence in Matt Hancock and I think he should be replaced, but with whom? It looks as though that Johnson front bench is already messing up with the vaccines.
As for my cousin, I keep telling the people in charge that he is too confused to be discharged. At the hospital they have lost his bag of possessions with his clothes, keys and cards etc.
That is about all for now.
Wishing you and Michael a very happy, healthy New Year.
Love.
Sylvia and regards from Raymond xxxx
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happy new year one and all. Xx
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hey Parkville
I know exactly where ur coming from every ache and pain! I have quite nasty osteo arthritis and DDD which has been exacerbated by chemo. Weekly massages with gentle mobilisation to release the facet joints in the spine and daily stretching help me immensely. Stiffness still there but manageable and like u the black thoughts sometimes rise. Study for me was a saving grace and it took my mind off of going to that dark place. Meloxicam daily is a much milder NSAID taken once a day is also helpful and less invasive on the stomach. Hang in there
Cheers
Kath
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Hi everyone
Happy New Year! We have just had a whirlwind Christmas with my 3 grandsons visiting and my daughter pregnant with her fourth child. It’s been very hot here and we have had Covid clusters rising in NSW and Vic which we have been called on to help with contact tracing. My last week of on call before holidays saw me in all weekend helping to call contacts in Sydney’s outbreak. The premiers of each state make up their own rules in a political game to score points with voters and close and open borders at will which is an absolute waste of time. We need to shut hotspots only and have faith in our public health contact tracers to do our jobs. The work that goes on behind the scenes for contacts tracing is immense and the longer states think they are Covid free and shut borders we will continue to see clusters appear.
Research is still underway with our vaccine campaign and it looks like a few different vaccines will be used start in Feb / March. I am about to start the final unit for my NP masters and should be completed by May I hope! We are start to see some influenza about with the raising of restrictions so everyone take care and remember to maintain social distancing. Much love to everyone and although I haven’t been able to contribute much of late because of a hectic time at work I think about u all often. We have developed such a strong friendship network. I’ll leave u with a few pics of a bush Christmas
Much love
Kath
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