Calling all triple negative breast cancer patients in the UK
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hi Gill, I have no idea what will happen with my friend who had the lung tumors. Her husband is also adamant about no more chemo, I think they do not fully understand how cancer can develop, they have been given some iffy advice by a family member and that, along with her recent treatment troubles, has convinced them that she is cancer-free. No matter the prognosis. I just hope and pray for the best, for her and for all of us really.
In other news, my oncologist visit was uneventful, she felt for lumps and we chatted about general health. I will have a breast MRI in 6 months because of density in breasts, she did say that breast density usually decreases with age.
I have been set free of big sling, hurrah! I saw the orthopedic doc and She did say to use it if insecure in crowded places or if being very active for next week or two. It does feel quite "out there" in the big world, but it's so nice to wear what I want, use a seat belt, and lie in bed without arm props, just a few examples.
What a week, i've seen oncologist, orthopedic doc, acupuncture doc and Physical Therapist, I see her again today.
In other news, I've read snippets of Catholic priests being allowed to marry in some third-world countries. Perhaps that should be universal, it might help fix the priest shortage problem, what do you think?
Cheers for all the young mom's who are figuring out spooky costumes and also how to keep their kids warm! It has gotten cold here suddenly, we had a little snow overnight and the door handles on my truck were frozen this morning. I think tonite I will just snuggle up and watch a spooky movie, my homage to Halloween.
Talk to you later, love, Mary
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Happy Halloween!
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Hello Gill,
Thank you for your latest post dated October 29th.
I have not had any time to do any posting these past few days but I shall be catching up during Friday and Saturday. I missed Despatches as I was watching Panorama, all about money laundering!
The weather here is miserable. It will not stop raining.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your latest post. You always have something interesting to say. I shall be catching up with the posts over the next two days.
Love.
Sylvia xxxx
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Hello helenlouise,
Thank you for popping in. Do you have Halloween? What is all the news from Australia?
Love.
Sylvia xxxx
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Hello everyone,
I'm not a fan of Halloween, but my grandson went trick or treating dressed as a ghost, so I thought I'd better show willing and took a photo of myself dressed in an old sheet. My granddaughter aged 19 months wanted to be a pumpkin, or ' bumkin' as she called it.
Gill x
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Hello Gill,
I do agree with you that we shall be in a terrible state if Donald Trump gets his hands on our NHS and I believe that if the people of this country want to keep their NHS then they need to vote Labour. This party represents the Many and Not the Few. It is not a question of liking or disliking a person, it is what that person's party stands for.
I suspect there is not much difference between the two taxane drugs that are used in the chemotherapy regime. The two drugs are docetaxel (brand name Taxotere) and paclitaxel (brand name Taxol). They both come from the same tree. When I was diagnosed in 2005 it seemed to be paclitaxel that was being used in the US and docetaxel here. I was told docetaxel was less harmful on the heart but I think both drugs probably affect the heart.
The chemotherapy drugs doxorubicin (brand name Adriamycin) and epirubicin (brand name Ellence) are cytotoxic antibiotics and so are included in the anthracycline group. The other common chemotherapy drug is cyclophosphamide (brand name Cytoxan) and belongs to a group of drugs known as alkylating agents. All of these drugs have nasty side effects, such as a combination of nausea, vomiting, hair loss, bruising, fever etc. We may not necessarily experience all of these but we will have hair loss unless we try the cold cap and get lucky.
We each need to add up the odds and make our decisions.
The weather is very dreary here and it does affect one's mood.
I watched the last Prime Minister's Questions on Wednesday and thought it was a disgrace. I think Boris Johnson is more suited to a boxing ring than Parliament. He seems to have forgotten that he is NOT the Prime Minister of the country but just of the Tory Party members who voted for him. All I can say is watch out UK if he gets a majority.
That is about all for now.
Love.
Sylvia xxxx
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Hello Mary,
I was glad to read that you had been able to read the posts about anticancer drugs.
I do think it will be good progress if with breast cancer we can arrive at a state where patients can avoid chemotherapy and radiotherapy and perhaps just have the tumour removed. This would mean very early discovery of a tiny tumour but you cannot know what cancer cells are circulating that could develop into tumours.
I agree that trying to eat healthily, keeping physically and mentally active, avoiding chemicals and avoiding stress should all help to keep cancer at bay, but they do not guarantee this. It seems obvious to me that the western way of life is not helping us. I was listening to BBC Radio 4 this morning and they were talking about the big increase in liver cancer over the past two years. It is a big increase and it was being attributed to obesity.
Are you still getting Chris Woollams emails? I have stopped them for the moment as I feel I am getting into too much information.
I have just noticed that November edition of WDDTY with the heading about eyesight has changed its title to Get Well magazine. I think that is a good idea and may stop orthodox medicine having a go at it.
I was glad to read that all seemed well with your oncology visit and mammogram.
I must admit that I am shocked at the routine way MRI scans are now being used. It is not something I have ever had and not something I would want. I had two CT scans, one before and one after my treatment, and two bone nuclide scans, one before and one after treatment. I had never had any before that and do not intend to have any more during my life.
I do hope life will get easier for you when that sling comes off.
I do try to imagine each of you in the group in your country and home setting. We all seem to live in such different settings.
Take care Mary.
Love.
Sylvia xxxx
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yes Australia now does Halloween. Last year we had not long moved into our new home and I bought a load of sweets for the kids that lived nearby but no one came. This year I was away on work and my husband was surprised by some young boys tricker treating and ended up giving them some slice we had in the fridge! Probably not what they expected!
I'm not really a fan, next we will be celebrating thanks giving!
It's starting to get warm and soon will be hot. We are expecting drought conditions eventually which will play havoc with the garden. Interestingly the local farmers have had a bumper season but north and central areas are in trouble with no water and have been for some time.
We have booked our trip to Japan. I decided not to wait for the outcome of my next oncologist review. Any trial prospects if I become eligible can wait for me. Will will be away for both Christmas and new year so that will be exciting and different.
Hoping you are all well xx
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Hello Helenlouise,
It was nice to hear from you.
I cannot really see the sense of Halloween. It is another religious ritual that has become a money-making event that fills children up with sugar.
I was interested to read that you mentioned Thanksgiving. Is it something that will come to Australia or do you already have it? Again, it is all commercial. We do not have Thanksgiving here and many will think we have nothing to be thankful about at the moment! We need to modernise. We are about to go in to six weeks of electioneering and I think it is probably going to be one of the worst elections in my lifetime. It will change nothing.
I was so glad to read that you have booked your trip to Japan. I think you have done the right thing as I do believe that we should never put off until tomorrow what we can do today. I do dislike procrastination.
I do hope you will be able to post some photographs to us.
Thinking of you.
Love.
Sylvia xxxx
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Hello Kath,
I thought I would mention that I just happened to se there was a programme on BBC2 television yesterday entitled Great Australian Railway Journeys, two of six, Sydney to Broken Hill. "Michael Portillo explores New South Wales by train, travelling from Sydney to the mining city of Broken Hill. Along the way he volunteers as a lifeguard at Bondi Beach and rides the steepest railway in the world at Katoomba." On his journey he was on the longest train that I have ever seen and it looked pretty comfortable inside. I saw that its final destination was Perth.
Everything looked very impressive and I shall certainly watch the next part. I missed the first part so I am not sure what went on there.
I hope all is well with you.
Love.
Sylvia xxxx
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Hello Mary, Gill, HelenLouise and Kath.
Thank you for your posts this week. It has been very quiet and I am the only other person who has posted. I do wonder how many people are viewing.
It has been, for me, one of those weeks that I am happy to see come to an end. I hope next week will be better.
Sending you best wishes.
Sylvia xxxx
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Hi Sylvia,
I still enjoy reading the posts to see how everyone is doing in their journey. Sorry the weather in your part of the world is dreary - it certainly does not help one's mood. My husband has a keen interest in the UK politics (he was born there) - he pretty much shares your sentiments about Boris Johnson!
Maryna - so glad that your sling is off and now I really hope and pray that your recovery will speed up - it has been a long difficult time for you with your shoulder. I do admire how you keep on doing things though and always come across as being super positive and upbeat. Great news that your mammogram was clear. I have never had an MRI - it is not routine here at all - I believe one would really have to fight for one unless there was a very clear need for it.
Rosie - I am not a big fan of Halloween either - we did not give out treats this year - but apparently some houses close to my neighbourhood had over 200 kids come to their door - which I find amazing. Who needs all that candy? Our neighbourhood had a trick or treat event for 3 hours where the store merchants handed out treats for the little kids who, along with their parents, were dressed in costume. Some families even had their dogs in costume - if you can believe it?
Kath - so glad that you are doing well and that you are enjoying your course - good for you. Grandkids are sure a great distraction (from our concerns) aren't they?
We have had glorious sunny weather here for about 2 weeks, but it is cold in the mornings. I am taking advantage of the dry sunny days by doing lots of walking and tidying up my garden for the winter break. And yesterday I planted my garlic - I generally do it in October - so I am a bit later - but we will see what happens?
Wishing everyone a good week, and take great care of yourselves - we are so worth it.
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Hi Mary,
Hope your friend comes round to taking her prognosis seriously. More treatment may not save her, but refusing treatment until it's too late could lead to some very sad 'what ifs'. What can one do though, apart from just being there and praying for the best outcome?
I heard about the Pope allowing marriage in some less developed countries. I think he might have felt that he had to do something quickly as it was becoming common knowledge that priests regularly had mistresses and families. Quite a few nuns were becoming pregnant by priests too. We have a number of married priests in East Anglia now. Mainly converts from the Anglican Priesthood who decided very late in life that the Catholics were right! Sounds a bit like having your cake and eating it to me. I think the problem with married priests is mainly financial - a married priest with children is going to need a reasonable wage to live on. Also Catholic priests must always put the good of the Church before everything else, so how would a wife and children cope with this when life (inevitably) gets tough from time to time? I don't know what the answer to the priest shortage is, the situation is getting desperate though.
So, big sling is now a thing of the past. Oh the joy of a good night's sleep, buttons, zips, sleeves and dressing up again. You could even wear a onesie if anyone ever discovers how going to the loo in one actually works!
Hope the hospital appointments have now slowed down, good to know that all is well. The aftercare you receive is impressive compared to most parts of the UK - at least those areas outside London. I have a friend who has been treated for triple negative cancer at University College Hospital London and she has been offered an oncology psychologist. I feel that we should all be offered this opportunity and I mentioned this to my oncology registrar after the C diff trauma. He absolutely agreed, but as usual, no money.
Leaves are blowing all over the garden and need raking up. The husband isn't keen on cold weather gardening and I have a cold and throat infection so they'll have to stay where they are for another week. No snow or heavy frosts here yet, just wet and windy. Bonfire night, which was held last Saturday in the village between showers was a huge success despite the weather. Apparently the bar was drunk almost dry, so a good time was had by all. Proving once again that us oldsters really know how to party. The young people of the village are more sensible and responsible, probably on the grounds that someone has to be.
Stay warm.
Love,
Gill X
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Hello Sylvia,
I telephoned my oncology specialist support nurse regarding my hair loss and left a message on her answer phone. No response, so left another message a week later. Again, no response. Blanking patients appears to be common practice here, whenever there are awkward questions. I wasn't angry at my hair loss, I just wanted to point out that patients should be informed. Of course, the lack of response had made me extremely angry. It is precisely the treatment I was given when I was denied the opportunity to see an oncologist after surgery. The fact that blanking patients is considered an acceptable approach by the person responsible for this department is actually very concerning.
Like you, I was appalled by Prime Minister's Questions. It seems that Johnson is quite incapable of telling the truth. He has now decreed that the report regarding Russia's meddling in UK politics will not be published until after the election. We should be very worried about the power and influence wielded by Dominic Cummings. Johnson is a weak individual who has been taken in by this man about whom we know very little. His time spent in Russia should be of greater concern than it is.
With the ever increasing waiting lists for cancer surgery and treatment you would think that the PM would abandon his 'another day, another hospital' election visits. It seems that staff are not warned about visits, why ward managers don't just order him out I'll never understand. A student doctor stood up to him last week, I wish more people would.
I didn't write earlier as I had a heavy cold and throat infection. I'm now left with an annoying cough that keeps me awake at night. I'd rather have it now than over Christmas though.
I read on another thread that Viewfinder is doing the contract work on her house, so she must be ready for her move. She seems well, and also her sister. I always wonder how people are getting on. I imagine Flora will drop in before Christmas and perhaps others.
Take care of yourself and Raymond.
Love,
Gill X
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Hi Adagio,
We didn't celebrate Halloween when I was a child. But on Bonfire Night, a few days later on November5th, all the neighbours would pile wood, old prams, worn out sofas and any other rubbish that came to hand onto a grass island at the end of the cul-de-sac where I lived and set fire to it. We made a Guy to go on the top. The older ladies would hand round treacle toffee and baked jacket potatoes. The only fireworks we could afford were bangers and jumping Jack's which the boys used to frighten the girls with. The next day our teachers would make us write a story about the occasion and if we were lucky she'd get the powder paints out in the afternoon and we'd be allowed to produce pictures to go with our stories. It was extremely dangerous of course, but I still have fond memories.
Gill X
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hi Sylvia, I finally made it back.
I agree about chris woollams' posts, a little break would be good. Much of it is repeat anyway. I wonder if my next issue of WDDTY will have new name?
Life is somewhat easier without sling, incrementally better day by day. For the first few days just walking without it was very painful because of arm movement, it is a long process to fully recover, but it's better today than it was a week ago. Onward!
I am trying to force myself to be optimistic, even though it all seems like Deja vu.
I attended my 50th class reunion over the weekend. Many familiar faces, and it brought home to me how very shy I must have been. I was familiar with most of the women, but with many of the men I had to look closely at nametags. I realized i had only been friendly with a small group of boys, the rest were alien to me in those long-ago teenage years. It was a good time, but nasty weather dampened things a bit. Instead of being outside, we were crowded into a drafty barn (with heaters!)
I saw your comment about Donald Trump's keeping his hands off the NHS, I had to look it up to see what's what. I do not comment much on UK politics because I don't know much. What I gathered is that it was about prescription drug prices, and he is trying to bring down our drug prices, since we pay the highest prices in the world. We have lots of research facilities, and easier access to said drugs. I suppose he is trying to spread the costs around, I can see why that is not an easy sell.
I don't mind having MRI scan, but I have heard CT scans are dangerous, because of cumulative radiation exposure. Have you seen the docudrama "Chernobyl"? It's really very good, and frightening, a real-life horror story.
I will close here, and get ready to go to therapy. Talk to you soon, greetings to Raymond.
Love Mary
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Hello adagio,
It was good to see you on the thread.
I was interested to know that your husband is interested in UK politics and that he was born here. How long has he been in Canada? I am not sure what the result of the election will be, but it is already getting very nasty. This first past the post system is not fair or democratic and it makes for very hostile behaviour. We probably need a Federal system but I do not think we shall ever get it. England treats Scotland, Wales and Northern Ireland too much like colonies. I think that Northern Ireland should be restored to the Republic of Ireland. Northern Ireland is a remnant of Colonialism and our mistreatment of the Irish. I think Scotland will end up separating and I do not think they should have to ask the Westminster Parliament permission to do this. I think the way things are with Brexit, Wales may separate as well. We have a devolved Scottish Parliament, a devolved Welsh Parliament and a devolved Northern Irish Parliament, so we should have a devolved English Parliament and then a Federal one to oversee all the others. We need, also, to share out the population. England is overcrowded with a population of about 60 million and the other three parts have very small populations, about 10 million in all. We need a Republic, an end to Monarchy, and end to the House of Lords and an elected Upper House. We need an end to honours and titles.
Do you think that Canada will ever shed the Queen and get an elected upper house?
I do hope we do not end up with Boris Johnson!!
I feel quite sad that our thread has become so small, but I do not know how to resolve that. I think that people are addicted to Facebook and Twitter.
Raymond and I do wonder what Canada is like now. It probably has changed a lot. We did like Vancouver and British Columbia as a whole. We also liked Ottawa and Montreal. Canada is a beautiful country. We did join a political party when we were in Ottawa and enjoyed it most of the time. We found meetings much more relaxed and we were on the executive for a time and our job was to write letters to the press and phone up radio stations.
I have been sweeping up leaves in the courtyards here today and trying to make everything tidy here as the leaves keep falling.
I would say that we are both in a down mood and trying to lift ourselves out of it.
By the way, what does your husband think of the EU? If he were here in the UK today would he be for Remain or Leave? For me there seems to be pros and cons for both.
Sending best wishes.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for your latest post. I do agree with you that blanking patients is not acceptable and should be challenged at all times. I can understand your anger.
I was glad to read that you were as appalled as I was at Prime Minister's Questions. I was absolutely hopping mad. He does not answer the questions and he stirs up chaos and pandemonium. He is more suited to a fairground boxing ring! I think he is a mythomaniac. As for Dominic Cummings, I am not quite sure what he is up to.
As for Russia, I am not convinced that they are the enemy. We tend to forget how much the Russians helped us in WW2 and what sacrifices they made. Well over 20 million Russians died in WW2. We always have to have a bogey man. Russia today is not the Soviet Union. I do wonder what happened that double agent and his daughter. They seemed to have vanished into thin air and I do not believe that people can do that in today's world. I do not think we shall ever know the truth in all of that story.
I do think that the General Election here is going to turn out to be another referendum and that the more important issues will not be discussed enough. Cancer treatment leaves much to be desired in this country and the Tories have ruined our NHS over the past ten years. We cannot trust them with our NHS. All this visiting to hospitals is just grandstanding and the staff should kick Boris Johnson out!
I was sorry to read that you have had a heavy cold and throat infection and now have an annoying cough. I hope it goes away soon. You can get a very strong cough mixture on prescription that is very effective. Raymond and I had to have it last winter.
I was glad to know that you had seen Viewfinder on another thread. It is too bad she did not stay with us. Like you, I do wonder how other people are getting on. I do hope Flora will pop in sometime soon. I do wonder, also, about Sarah who was posting about her mother. I think they were in London.
I have to end now. Take care.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your post. I have run out of time so I shall have to answer tomorrow. I am so glad you are without your sling now.
I think you would enjoy reading the book I think I mentioned somewhere entitled The Body, a Guide for Occupants by Bill Bryson. It is so informative and yet entertaining. He must have done a huge amount of research.
Love.
Sylvia xxxx
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Hi everyone
bit flat this week but keeping busy helps! The Indian Pacific is a huge train Sylvia. It’s named after the two oceans it travels between from one side of Australia to the other. Broken Hill is the only stop where people can see the whole span of the train in one view of u know what I mean! It’s because we are so flat ha ha. It pulls in to the station right next to my office. I’ll try and take a pic next time!We have had some rain which was fabulous and everything looked so much cleaner but need lots more and the dust has followed. Stay well everyone
Much love
Kat
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Hello Sylvia,
It seems that the University of Nottingham is developing a blood test which will show the presence of breast cancer up to five years before the tumour is detectable by the usual means. So far the test appears to have a high rate of accuracy but needs further development and testing. If all goes well it could be available in 4 - 5 years. As we know, the results of mammograms are unreliable, especially for those with dense breast tissue and most women seem to detect their cancer themselves. I do hope that we really will see this blood test available in the time predicted. It could be a game changer for those who have very aggressive, fast growing cancers such as triple negative or metaplastic. It seems to me that early detection could reduce the need for aggressive surgery and chemotherapy.
Apparently Johnson will give a speech outside number 10 after he's been to see the Queen. Never have we seen such a duplicitous and dangerous PM in power. Of course, this Government will be voted back in because Johnson is working hard at presenting Corbyn as a Stalinist. Which is ironic when we have Dominic Cummings waiting in the wings. I'm very worried.
My cough is now a chest infection. I have one most years after a heavy cold. If it gets worse I'll ask for an emergency GP appointment - it takes about a month to book an appointment here. I don't want antibiotics if I can avoid it.
I do hope that this week is proving to be a good deal less trying for you than the one just gone.
Love,
Gill X
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Hello Mary, Kath and Gill,
Thank you for your posts. I have not had time today to answer them. My day has gone dealing with a plumbing repair in our apartment and some problems in our complex. We have had two new owners recently and to say they are toxic is an understatement!
I would recommend this new book by Bill Bryson. I think you would all find his chapter on the immune system very interesting. The whole book is well worth reading.
Love.
Sylvia xxxx
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Hello Sylvia,
Bill Bryson's book is being serialised on BBC radio 4 at the moment. If anyone wants to listen they'll have to be quick, as episode 1 will only be available for another 6 hours.
Sorry to hear about your two toxic tenants. One would be bad enough.
Love,
Gill X
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Hello Mary,
I do hope you will make good progress with your arm. You have been through such a lot with this.
How interesting that you went to a 50th class reunion. I bet that was quite an experience.
As for politics, it is very difficult to understand what is going on unless you are actually living through it and living with it. The system in the UK is just too archaic and in a way completely ridiculous. It needs urgent modernisation and we need a written constitution.
As for politics and the system in your country, it is difficult to understand as an outsider. Both countries have a first past the post system that is not actually based on the number of votes and this system works on hostility rather than cooperation. As far as I can see the electoral college system in your country and the unfair way seats are won here in the UK make for unfairness. I really believe you should add up all the votes and the winner is the one with the most votes. I think our system is worse than yours because we have a multi-party system. Unfortunately we are not a Republic and we do not have a President as head of the country. Are you confused? So am I!
You are right about CT scans. They are dangerous because they expose you to high levels of radiation. The bone nuclide scan is even worse and leaves you radioactive for a few days. I hated having them. I have never had an MRI scan.
I have not seen the docudrama Chernobyl.
Raymond sends his best wishes.
Love.
Sylvia xxxx
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Hello Kath,
Thank you for your post. It would be a great adventure to go on that Indian Pacific train. It looked really comfortable. I do hope you manage to send us a photograph of the train. How long does it take to go across Australia like this? The next part of the journey will be Adelaide to Perth, showing on Saturday.
We are having a great deal of rain here. We could have done with it during the summer.
Keep well, keep busy and do not worry. Just live the day.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for your latest post.
It will be interesting to see how this blood test finally works out. I am always dubious about these things because I am always concerned that it will lead to more medication being dished out for something that may not happen. It will certainly bring on plenty of anxiety. We have cancer cells circulation in our blood all the time, but most of the time the immune system sees them off. I would be concerned about false positives. Cancer cells are mutating all the time so I wonder how a blood test would predict what kind of cancer it is and what its receptor status is.
Boris Johnson's speech outside number 10 was a load of hot air. He is now doing the rounds dressed up like one of the workers but looks like a performing idiot.
I do hope ordinary people are not going to be duped by him. I do not think he should have been able to get away with calling Jeremy Corbyn a Stalinist. I think that comment should have landed him in court. The latest photo-op I saw of Johnson was one of him imitating the V for Victory sign that Churchill was famous for. It is unbelievable that he thinks he is Churchillian!
I was sorry to read that you have a cough following a chest infection. I do hope you get it cleared up soon.
That drama The Body was actually on Radio 4 Extra but I think it has passed.
Take care, keep warm, and have a relaxing weekend.
Love.
Sylvia xxxx
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hi all,
I thought I would post this while it's colorful, in 2 days we will get very cold and the leaves will fall from this Japanese maple
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Hi Mary,
That's a beautiful tree. I have one in my garden but nowhere near as impressive as yours.
Wrap up well now that the cold weather is coming your way.
Gill X
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hi everyone
Hope ur Sunday is a relaxing one? The south coast of NSW is alight with bush fires because it's so dry. We are too far in land for it to be a problem for us. We just get the daily dust storms. My friend was flying in from Sydney and took a pic of the last dust storm over Broken Hill. I've also added a few pics of the devastating bush fires along the coast near Sydney. My heart goes out to the poor people and the native animals. We need more rain so badly! Stay well everyone
much love
Kath
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