Calling all triple negative breast cancer patients in the UK
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Hi Sue,
That's very good news! Chemotherapy has worked incredibly well in your case and all that suffering was well worth it. I'm pleased that your medical team has been so efficient, just a few minor glitches, but mostly excellent. It must be good to have confidence in your doctors and your hospital.
You must be relieved that you now have a date when you can go back to the classroom, I know how much you miss it. It's thoughtful of your oncologist to give you some leeway just in case you don't feel ready by the beginning of November. As always, remember that you've been through a lot, physically and emotionally. Be kind to yourself while looking forward to a future when cancer isn't something you think about much any more. It never quite disappears, but it no longer gets in the way of normal life and it certainly no longer rules your life as it has in the last year.
Congratulations on coping with this whole horrible chapter so well.
Love,
Gill xxx
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Hello Gill,
I was very interested in what you had to say about "chartered cities" and I shall be trying to read up about them. I must admit I have never heard of them, but I certainly do not like the sound of them. I cannot imagine anything worse than company-owned cities. What happens about the rest of the country? Do you know where there are any?
I am tired of this comedy show that is calling itself a leadership contest. On one of the TV channels yesterday they had run a poll of the public about the leadership of the Conservative party and included Boris Johnson, who came way out in front! What can we make of people who think it is alright to have a pathological liar in charge of the country?
It is unbelievable about the state of the Norfolk and Norwich University Hospital. Has anyone during these debates tackled Liz Truss about it? It is disgraceful. The PFI fiasco should never have been allowed.
As for the flu vaccinations, Raymond received a letter from our local Boots store offering him a flu vaccination in September. I did not receive anything, even though I had a flu vaccination at Boots at the same time as Raymond last year. I phoned up and booked in flu injections for Raymond on Tuesday September 20th. I asked why I had not received a letter and there was no explanation. I booked one in for the 20th for myself, but it was a bit bureaucratic to do so.
As for the fourth Covid vaccination, we did receive letters from the NHS about having them done but you had to do it online, even if you were getting it done locally at your pharmacy. Boots are not doing this Covid vaccine, but another local pharmacy is, so we are going there. That pharmacy is not doing the flu vaccination! We are supposed to be going there on August 23rd but I still have reservations. Family members have been unwell after this fourth vaccination. How many more are there going to be and people have been dying from these vaccinations. We feel damned if we do and damned if we do not. I was very surpised to read that you know of two cases who have had five jabs. What was this fifth jab all about?
In addition to all this, I have listened to more news about the monkeypox which seems to be spreading and there seems to be a push to vaccinate for this using the smallpox vaccine. There is also the problem with polio. It was found in the sewers in East London and it has now been found in the sewers in New York. This seems to be associated with the polio vaccines given on sugar lumps and probably brought in by people from outside.
Like you, I do wonder whether HelenLouise is alright, as well as Kath.
I do hope it will rain all day today so that nature will begin to recover. I need the temperature to go down as Raymond and I are both suffering from this heat.
That is about all for now. Love and best wishes.
Sylvia xxxx
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Hello Gill,
Just to let you know that I looked up chartered cities and I do not like the look of anything like that at all. It seems popular in the US and Canada.
It is strange that after you mentioned about a fifth vaccine for Covid, and your friends, it was mentioned on the news on the radio at lunchtime. It was difficult to know what to make of it. Apparently the 'experts' have been tweaking the original coronavirus vaccine which was for the original delta variant, to make it suitable for the Omicron vaccine. This was announced by Moderna. I do wonder where this is going? How many vaccines are we going to be getting? As far as I know, we still have not had the full pages of the Pfizer report which they were trying to keep undisclosed for seventy years!
It is pouring down with rain here at the moment, and it is so welcome. We have also had a lot ot thunder. I hope you are getting some rain.
That is about all for now. Stay safe.
Love.
Sylvia xxxx
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Hello Sylvia,
The Tories have two years left in power, they'll push Chartered Cities through quickly, ignore all opposition and we'll stand by helpless to prevent our own city, the places where we live and work from being sold off to some filthy rich, elite criminal. Why is the Press so quiet?
The latest vaccine announcement is probably designed to take the public's mind of the cost of living crisis. We'll now have the choice between dying of covid, starvation or hypothermia this Winter. I'm sure I didn't used to be this cynical. Most of my friends are Tories, (it's a Norfolk thing), and I'm getting so angry with them that sometimes I'm barely civil. I'll soon be a recluse at this rate. As for all these vaccines, I'm not sure. I always have the annual flu vaccination and I'll probably have the Covid vaccination and maybe Smallpox, although am I really at risk from monkey pox? It's having so many vaccinations with so little time In between that concerns me. Are we to have a jab for absolutely everything? I can see the value of the vast majority of childhood vaccinations and both my grandchildren have had all of them. Older people lose immunity as they age, will these vaccines actually help us for any length of time? We are a bit short on facts and the Health Secretary is keeping quiet/gone into hiding/on holiday/at a party/doesn't know/doesn't care. The Pfizer report needs to be published.
Unfortunately, we didn't get the promised deluge here in South Norfolk. It began very dull and a little cooler so I was hopeful, but the clouds have cleared and the sun is shining yet again. It's making life very miserable. I'm pleased that you've had some heavy rain, but you'll need a lot more to make up for the shortfall.
Keep safe and well both of you.
Love,
Gill xxx
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hi everyone
Hope you are all doing well? Winter has been really cold here in Australia which is crazy when I see the heat u are having in the UK. Our Covid peak seems to be slowing but RSV and influenza A is increasing dramatically and we are try to play catch up in the world of Public Health. It’s good to be able to take a breath though
I’ve just been told that a position is being funded for me as. Communicable disease NP across western and Far West which is a huge area but at least I’ll be able to run clinics for the increasing numbers of immigrants we are seeing now that people are travelling. Off to Darwin in a week for a friends 60 th so I’ll be able to send pics . It’s a beautiful very different place.
Stay well everyone
Much love
Kath
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Hi Kath,
Congratulations on getting funding for communicable disease clinics, sounds like an awful lot of work though. Don't forget to take care of yourself as well as others.
Really strange weather in a lot of places. Our drought has gone on longer than any other on record. We're so used to wet Summers, and cool Springs, this year was very different. Cold Winters are not something any of us in the UK associate with Australia, what's happening? If it's global warming it's moving far more quickly than we'd anticipated.
Enjoy your trip to Darwin, hope you have some warmer weather for your friends 60th.
Love,
Gill xxx
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Hello Gill,
Like you I feel the latest push to get vaccinated is a distraction from the dire state of this country and indeed the world. Raymond and I have cancelled our appointment for the fourth vaccine and what a bureaucratic mess that was. We are not going to get the next booster as this is going to continue all the time. As for the flu injection, we are not sure what we are going to do.
It looks as though the AstraZeneca vaccine has been shelved and a lot of it has been wasted. I suspect the same risks are with all the vaccines. I think the powers that be will be pushing for monkey pox vaccines and polio ones.
I think all we can do is wait for September 5th and get all that nonsense out of the way. Whoever wins will be a disaster!
There is not much else to say. This country just seems to go from one disaster to the next.
Have a good weekend.
Love and best wishes.
Sylvia xxxx
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Hello Kath,
It was nice to see you back on the thread.
It sounds as though you are going to be very busy with your new position. Make sure that you look after yourself first and foremost.
I hope you are keeping well and try to keep safe. The big push is on here for the next booster which they are calling a bivalent one that protects against delta and omicron. According to a poll yesterday, on one of the news channels, 84% of those polled were against having it. I think people have reached vaccine fatigue and there is so much worrying news about the side effects of these vaccines and even deaths.
That is about all for today and I am working through a list of things to do in the hope of having a free weekend!
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
I consider Dr. John Campbell to be a reliable source of covid information. His recent YouTube talk entitled 'Vaccinations Adverse Reactions' is well worth a look. He's made me think again about accepting a fourth vaccination. Why are the statistics concerning serious reactions to vaccines, published by ONS, NHS and other 'reliable' sources of information such as the Yellow Card reporting scheme, so different, muddled and difficult to get hold of? In one instance, Dr Campbell had to resort to a Freedom of Information request. Why?
We will have our flu vaccination, but exercise caution with the 4th Covid jab.
EU regulations on the dumping of raw sewage gone. Result is an island with a notoriously beautiful coastline now surrounded by a brown sea of human waste. Our beaches ruined, our rivers awash with sewage, fish and wildlife poisoned. How long before cholera, typhoid and worse are back? Polio is already revisiting. What a mess of a country. It didn't take long for Johnson and co to destroy us did it?
I'm trying to see the bright side, but there just isn't one.
Take care - don't rush to reply, the thread is very slow and we both have plenty to do at home.
Love,
Gill xxx
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Hello again
It's the mole lady finally returned! Sorry about the radio silence, and thanks to everyone who responded to my last post.
So to update, I had an appointment at the cancer centre Aug 8, and was reassured that the risk of spread to the nodes was very low, 3-5%.
I did feel like pointing out that if someone told you you had a one in 20 or 25 chance of winning a million dollars, you might think those quite good odds!
Anyway, we decided that the risks of complications from further node dissection in my case likely outweighed the likelihood of finding cancer in the nodes, so I was referred back to the skin cancer surgeon, and to my surprise got a call within a couple of days, and had the wide excision a week ago!
I now have a 3 inch wound on the back of my shoulder, which is gradually getting more comfortable. Mainly rather tight, and strict restrictions in stretching or exercising for 4 to 5 weeks, so that's me out for a good chunk of my dragonboat season, which is so short here in Calgary!
We are actually having a very prolonged hot spell, similar to the UK, currently, so it'd have been so nice to get out on the water! I've invested in a long sleeved spf 50 shirt for paddling but I'm just not allowed for now! 😭
The nice ppl at the cancer centre have referred me to a different (female) dermatologist for ongoing follow up, as it's important to be on good terms with a doctor you are going to be seeing a lot! 🙄 I've heard she is excellent! The cancer centre also did a punch biopsy on a small itchy red spot on my left chest, cancer side, which I was fussed about, but the pathology was non-malignant on that, although I'm still not sure what it was.
I'm looking forward to meeting my new dermatologist, and I hear she's interested in checking out family members too, so will have to see if I can get my two sons to go see her at some point. You are so right about sun protection, but it just wasn't a thing when I was growing up, and people have always admired my "beautiful tan"! Seems so silly now!
Ok, that's enough from me. I'm interested to follow what everyone is saying about Boris and the conservative leadership..... 😳
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Hello Morwenna,
It's always good to know what's happening with people on the thread. That's quite a large incision, especially in an area that moves when you stretch or reach for anything. You must be disappointed that you'll miss most of the dragonboat racing - I had to look it up and discovered that it was in its 31st season, so you'll probably have taken part for quite a few years.
Your treatment was very quick compared with the UK. Boris Johnson has deliberately run down our National Health Service and waiting lists, even for cancer, are very long. He'll sell the NHS off like he's sold off so many vital services. After leaving the European Union, the Conservative Party voted to allow the extremely wealthy privatised water companies to dump untreated sewage into the sea and our rivers. We are now having to close our beaches and stop people swimming in the sea as human waste is everywhere. That's just one example. It's all about the money with this lot. I could write a book about what's been happening here, none of it good!
Good luck with your new dermatologist, she sounds promising and I'm impressed that she's interested in checking your family too. You're so right about that sun tan, if only we'd known how common skin cancer would become. We've had a very long hot Summer here and there are still people taking risks and putting their children at risk too, so the warnings are just not getting through.
Hope your wound heals quickly and that there's no further problems.
Love,
Gill xxx
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I do enjoy dragonboat. Our club started 25 years ago next season, and I have paddled since 2014 pretty much. In 2018 we paddled in Florence at the international event.
It's a great way to reclaim your health and strength, and a great source of peer support, but each year we do lose some members to breast cancer, so it can be a bit of a two-edged thing ...
We call our passed-on members our "spirit paddlers", and each year we add their names to the inside of the boat and carry them with us.
Of course we had a 2 year hiatus due to the pandemic, so tomorrow we are adding the total of three years of losing our friends and comrades, and very sad to say we have TWELVE names to be added tomorrow evening. Some were friends, people I have paddled with, and others past members who paddled before I joined.
It is my duty as vice-president to welcome family and friends and to read out their names ..... something I am not really looking forward to 😒
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Hello Morwenna,
I did some research on the sisterhood dragon boat. Seems like a very powerful way of making something positive out of such a cruel, vicious and widespread disease as breast cancer. One in seven women get breast cancer in the UK, not very long ago it was one in nine and the numbers continue to increase year on year. I'm not at all surprised that you have lost 12 paddler colleagues since the pandemic. It will be a very sad task for you to read out their names, but a fitting memorial and a day to keep forever for those who have been bereaved. It's also a reminder that breast cancer isn't curable. I get so tired of people asking me if I'm 'cured'. I'm not!
You and your fellow paddlers must be very fit and having a supportive network of women who have direct experience of breast cancer is so important - despite the inevitable sadness. Hope your back heals quickly enough for you to be back in your boat before the season ends.
Love,
Gill xxx
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Hello Everyone,
I hope you all are well and that you have gotten some rain. We have gotten quick storms here and there, but nothing substantial.
It's nice to meet Morwenna! Dragonboating sounds very interesting. I'd love to try it someday when I'm able to start to build some strength in my arms. I still have a few weeks until that can happen. I'll have to see if there are any places close by that I can see dragonboating and possibly participate. It sounds like so much fun! The big thing here in the US and with many of my friends is pickleball. I played a bit in college, but that was a long time ago.
Not much happening with me at the moment. I'm feeling well and recovering quickly from surgery. Last week, I had a physical therapy consultation for lymphedema (which I don't have). The PT took measurements of my arms for baseline information. She also gave me exercises to do. I've added them to my exercise bike and walking routines.
This week, I'll do my mapping appointment for radiation. I hope they start the radiation soon. I want to go back to work by November. I'm feeling good right now, but not quite strong enough to return to 6-year-olds. They take a lot of energy.
Stay well and healthy!
Love, Sue
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Hello Gill,
I think you are right about Dr John Campbell being a reliable source of Covid information. I also follow Mark Steyn on GBNews at 8 pm Monday to Thursdy. This news channel tends to be to the right but they do have panels on their programmes with opposing views. Mark Steyn has been telling the truth about the vaccines and actually interviewing people whose family members have died from the vaccines. Some have already obtained compensation for these deaths.
This country of ours is in a dreadful mess and nothing seems to work. I do not think it is going to improve.
That is all for now.
Love and best wishes,
Sylvia xxxx
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Hello Morwenna,
I was glad to know that you have had the surgery to remove the mole. I do hope that it will not take too long to heal and you can get back to a more normal routine.
I was glad to read that you have a new dermatologist whom you like. That is so important.
Life is pretty miserable and frustrating in the UK at the present time. Nothing seems to work and the politicians do not seem to care. They are all on holiday while the UK sinks!
Take care of yourself and keep in touch.
Love and best wishes.
Sylvia xxxx
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Hello Sue,
I was glad to know that you have had the surgery to remove the mole. I do hope that it will not take too long to heal and you can get back to a more normal routine.
I was glad to read that you have a new dermatologist whom you like. That is so important.
Life is pretty miserable and frustrating in the UK at the present time. Nothing seems to work and the politicians do not seem to care. They are all on holiday while the UK sinks!
Take care of yourself and keep in touch.
Love and best wishes.
Sylvia xxxx
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Hi Sue,
You've worked so hard on getting your strength back and deserve to be feeling so well. Not surprised that you still don't feel up to coping with a classroom full of six year olds. My grandson is six and a massive handful most of the time. Never tired, never seems to run out of questions and never not hungry.
I'd never heard of pickleball, so I had to look it up. Sounds fun and something that even I might be able to do - dragonboating also sounds like fun, but way beyond my capabilities. I have absolutely no doubt that you'll be back at school in November, but radiotherapy can be exhausting, so just wait and see how you feel.
Rain keeps being promised, but never quite arrives in my part of the country. We've had a few showers, but too light to make a difference. We desperately some prolonged heavy rain - but not so much that we flood.
Keep on looking forward.
Love,
Gill xxx
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Hello to all, Sylvia, Gill, Sue, Kath, and Morwenna
I think I've been absent for most of August, and much of July. My house remodel took up all of July and some of June. Since then been constantly busy with catching up with other things neglected.
I've been very tired since we have our fall-like weather, allergies are lousy right now. My General Doc ordered a colonoscopy for me because I have lost some weight. I received the orders for the colonoscopy prep and it's awful, so many laxatives the day before, I fear it might be dangerous for me. It will be hard not to get dehydrated.
We also had the dreadful heat wave and the following drought. We've had just enough rain lately so things are green again, but we need much more.
I read that Sue is finished with chemo and surgery, hooray! I hope she recovers quickly.
I reD that Gill and Michael are going on a cruise, that's exciting, I've been on quite a few pre-Covid cruises and enjoyed them. By 2024 things should be better if no hideous actors inflict another plague. I don't think you need worry about monkeypox, I heard Doc discussion, saying it needed skin-to-skin contact to flourish, not casual contact. Whatever else comes, we shall have to put up with it I suppose,.
Sylvia, when you talk about government woes it sounds exactly like over here. It's depressing, I feel, there isn't a lot of optimism that these people will go away soon.
I will write back sooner than since last time, talk later, love, Mary
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Hi Sue
Just regarding your comments about dragonboat being beyond your capabilities..... we have an average age of probably around 55, but we have paddlers going well into their late 70s! Our oldest member has just announced her retirement this year. She was a founder member 25 years ago and is now over 80! Unfortunately she has this year been diagnosed stage 4, and has mets to her liver, lungs and spine, which is such a shame after all this time!
We have members with joint replacements etc who have to be helped in and out of the boat. We have dryland training that starts in February to ease us into fitness for paddling season, and we all get stronger as the summer goes on.
Thats why I'm grumpy about not being able to paddle, as I feel I'm seizing up after only a week off! 😆
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Hi Morwenna,
Interesting sport--I don't think I'd heard of it before, but as soon as I started researching, I found 3 or 4 places close by. I also read about a regional festival nearby in September. I definitely will go to the festival and see what I can learn there about clubs that are nearby.
I can walk and ride my exercise bike, but I cannot do any exercise (other than my stretching for physical therapy) for my arms. Chemo for 6 months really ate away at any muscle I had formed and sucked away my strength. But I'll work on that when I am permitted. I've been a walker my whole life, so that's easy to get back to.
Thanks for the info!
Love, Sue
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Brilliant Sue!
Do go check it out 😁
I'm a physiotherapist in oncology rehab, (and a certified lymphedema therapist) by the way, and curious as to why you should not be exercising your arms?
We have a lot of breast cancer patients in our clinic, and once we have worked on functional range of movement, always start them on a progressive strength program using resistance band and/or free weights ..... 🤔
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Hello Sylvia,
Since 2010, when the Conservatives won the election, austerity has caused tens of thousands of extra deaths in the UK. The mortality rates rose sharply after 2017 and we are now seeing 500 more deaths per week over and above the seasonal norm. Heaven knows what the figures will be during the colder months.
Meanwhile, during an interview yesterday, Liz Truss insulted the French President by saying that the jury's out on whether he is a friend or enemy of the UK. Sunak declared that scientists were given too much power during the Pandemic, this resulted in lockdowns which in turn resulted in him dishing out money for furlough on their say so! Not a word about the billions handed out to their corrupt mates or the insane 'eat out to help out' scheme. Meanwhile, the PM tells us that Putin is the cause of the cost of living crisis, remainers are the cause of the current brexit problems and anyone who doesn't like what's happening is a lefty. It's everyone else's fault!
Liz Truss was in Norwich with Rishi Sunak last night and told her audience that she would give 'serious thought' to rebuilding King's Lynn hospital if they voted for her - the roof is falling in, wards are being closed due to safety issues and Liz will 'think about' rebuilding it.
I'm very, very angry with this Government and furious with people for just accepting it. Where's the outrage? I'm just thankful that my cancer diagnosis was pre Boris Johnson, but fear that if it returns or if some other serious health problem arises that I'll be left without treatment.
The weather here is much cooler and we've had some much needed heavy rainfall.
Wishing you a peaceful weekend.
Love,
Gill xxx
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Hi Mary,
Good to know that you now have your house to yourself - though I sometimes miss builders when they finally go. Probably miss making all those mugs of tea and coffee.
I've booked the cruise with Cunard, on the Queen Anne which is due to be launched in January 2024. Everything should still be new and sparkly for our trip in March. We've never been on a cruise before and probably won't again, but it was something on my 'to do' list.
Good luck with your colonoscopy, I hope it will put your mind at rest. Losing weight when you're not actually trying to is always a worry, I'm glad that your general doctor is taking it seriously. Let us know the outcome.
Love,
Gill xxx
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Hello Mary,
I am always very happy to see you posting on the thread. I do hope you are going to have some relaxing time for yourself now, and, of course I hope all goes well with the colonoscopy.
I hae been feeling a bit weary lately and I think a lot of it is due to the anger I feel at what is happening in this country. Nothing works here and as Gill said in her post Boris and his mates blame everyone but themselves. I think the rot and lack of dignity and seriousness and the general dumbing down of Parliament was caused by Boris Johnson. He is an entertainer not a leader of a country. If only politicians could learn to live like the rest of us they might understand what we are going through.
That is enough of my ranting.
Thinking of you and sending love and best wishes.
Sylvia xxxx
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Hello Gill,
Thank you for another interesting post. You have said everything that needs to be said about Boris and his 'team'. They think they have been marvellous but in fact they have been useless. I cannot think that either Richi Sunak or Liz Truss will improve the situation. These leadership hustings have been shameful.
Like you I am glad I am not going through breast cancer treatment at this period of time. If you want treatment the only way to get it is by paying. Even that is slow now.
I have to go out now to do a few things and to get a bit of relaxation. I get so angry with all the dire news.
Thinking of you and sending love and best wishes to you and Michael.
Sylvia xxxx
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Hello Sylvia,
You sound very weary, why don't you take a week off from the thread? I feel much the same, anger is inevitable and wears us out. Everything here is broken and most people are living in a state of anxiety and fear. It's just exhausting.
Please don't reply to this.
Wishing you peace and space to relax with Raymond.
Love,
Gill xxx
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Hello Gill,
Thank you for your last post.
I hope all is going well with you.
I am glad the Bank Holiday weekend is over and Raymond and I had a very quiet few days. I can see there has been no activity on the thread since you posted. I do think that this particular thread has probably come to an end. I started it on September 12th 2010, so that is a long time ago. Perhaps it is time that a different thread for TNBC is started, a more generally titled one than this one.
There is still no news from HelenLouise and Mary and Kath only pop in occasionally. It is good that all is going well for Sue.
It is my birthday today so my brother Ray here in Exmouth is taking us out for lunch.
Thinking of you and Michael and sending love and best wishes.
Sylvia xxxx
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Hello Sylvia,
I hope you had a wonderful birthday! I hope you enjoyed your lunch with your brother. You deserve that very special day!
I celebrated mine this year during treatment, but I was thankful to be alive and heading toward well.
Radiation hasn't started yet. I wanted to start this week, but they told me to be patient. Meanwhile, I had lots of contact from my school from friends and the teacher who will be replacing me for a few months. She's lovely. But I want to be there to start the year and I cannot. It's the first time in a long time that I haven't started school in the beginning.
The physical and psychological toll that cancer takes on its victims is unbelievable! I've had so much support from my husband, friends, colleagues, and all of you on this thread, and still, sometimes, it feels like I'm on an island. And then the boat arrives and I'm not alone anymore.
Pushing through is hard. And I know I'll get there soon. The waiting stinks. At least we've had some rain and the weather for the last few days has been pleasant. I'm grateful to wake up every morning and have my juice and tea. I'm thankful that I can ride my exercise bike and take longer walks.
I hope the rain and fair weather reach you soon!
Love, Sue
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Hello Sylvia,
Wishing you a very happy birthday and a good lunch with your brother and Raymond.
I don't know what to say about the thread, it's had a very long run since you began it all those years ago. It's been much quieter over the last two years though. The whole website is much quieter. Helenlouise hasn't posted for four months and I'm very worried about her - as I know you, Kath and Mary will be.
Enjoy your day and take good care of each other.
Love,
Gill xxx
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