Calling all triple negative breast cancer patients in the UK
Comments
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Hello again Gill,
I have just discovered that I did not put UK on my signature details when I started the thread. I have now tried to add UK, but it keeps coming up with GB which is down on the information sheet as Time Zone. I have tried entering the town but it does not come up and it is still coming up GB. I must admit that any posts I have seen on the forum from Brits say UK. To be more precise, should it not say England, UK because I am sure I have seen in the past Scotland, UK.
Please help if you can.
It would be so nice if we could decide on one name to include all the parts of this Disunited Kingdom!
Anyway, I consider myself English and I never call myself British!
Best wishes and love.
Sylvia xxxx
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Hello Sylvia,
The post from Beesie - July 26th is on the 'Have you had an over zealous radiologist?' thread.
I'm going to listen to Joan Baez and Bob Dylan while wading through the ironing before packing. They bring back many happy memories, as does another favourite of mine, Julie Felix.
Enjoy your week.
Love,
Gill xxx
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Hello Gill,
Thank you for answering about Bessie. I have just read the post. I think a person has to do what they think is best for them. I can only speak for myself and I do not like the idea of overdoing scans of any kind or being too drawn into the medical system. In particular I do not like the idea of too many mammograms. During the ten years that I saw my oncologist and the five during which I saw my breast cancer surgeon, they never pushed mammograms on me. I probably had two or three during those ten years and have not had any since. I think regular three yearly mammograms of women in the population ends at 70.
I do inspect my left breast and right side surgery site regularly. I am not going to worry about breast cancer occurring in my left breast. There is enough to be worried about with all the damage that may have been done to my body as a result of cancer treatment. We need to switch off and enjoy life. None of us knows what may happen to us as each new day begins.
Enjoy your break and concentrate on relaxation.
Love.
Sylvia xxxx
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Hello all!
We were able to go on a trip to see my daughter and son-in-law and my grandchild last month. It was a lovely week spent at Lake Michigan which is one of the Great Lakes here in the US. Unfortunately I was feeling pretty rotten for the whole trip and did my best to enjoy our time. When we returned home I scheduled an appointment with a urologist, which lead to having a scope of my bladder (cystoscope) and an abdominal CT scan. Of course my anxiety was through the roof regarding what would be seen in the scan… everything looked fine except it showed that I have or had two measurable kidney stones and several small stones. I have been taking a medication for the last month to encourage the stones to pass, but I’m not sure if they all have gone through. I have to have another CT scan today which I’m not happy about, but they said they want to make sure that they are no longer there. It’s been an uncomfortable month.
I had my 6 month check up with my oncology nurse practitioner last week. It’s been 4 years now since diagnosis, I’m wondering if the worry will ever go away. I still have pain and soreness in my breast and arm pit where I had the lumpectomy and sentinel node removal, she assures me that it’s all scare tissue. But I do worry about it. Why is it so sore. The oncologist said I should of done a better job of breaking down the tissue… I’m not sure I was ever instructed to, I’m a pretty compliant patient but it sounded to me that she was saying it wasn’t going to get better. A woman that lives in my city has written a book “Undying” it won the Pulitzer Prize for nonfiction literature I believe for 2020. My son-in-law is reading it and it’s her memoir of being diagnosed with TNBC and the medical treatment she received. He said it’s pretty scathing on her assessment of treatment. Health care should be better. But again it has kept her alive. I’ll have to talk to my son in law after he finishes it to see what he thought of the book. I used to read all the time - loved to read but since going through diagnosis and treatment I just don’t have the concentration to read, my mind is mush!
Thought I would share a photo of my husband and my little grandson on the beach of Lake Michigan, gathering all the stones they could find on the beach.
Wishing Sylvia, Gill, Mary and everyone all the best! Be safe as you can and stay healthy!0 -
Hi everyone ,
Hope u are having a great weekend? Australia is now catching up with the rest of the world for Covid and the delta strain is relentless! It all comes down to our very slow vaccination campaign and the media hype around AZ!
Public health units across NSW are now on high alert and we are working afternoon shifts and 6 days a week to cope with the onslaught. We all get a case load from Sydney everyday and we are responsible for case questionnaires follow up isolation of contacts and venue risk assessments so it's been frantic. Since delta hit some of our multi cultural LGAs most of the case questionnaires have had to be done with interpreters on the end of a phone which is horrific! The defenceforce has now been called in to try and keep these people home but it's very difficult as the poor things have come from war torn countries so have an innate distrust of government.
Follow up of other notifiable diseases is also becoming very difficult as we are all so time poor. I have two new cases of TB that I need to contact trace as they were in Hospital before diagnosis but have not been able to travel or find the time to do it.
Delta has such an incredibly rapid spread that it is becoming very difficult to contact trace quickly and unfortunately burn out in the field of Public Health is now common.
Stay safe everyone and enjoy ur weekend
Much love
Kath
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Hello pkville,
Thank you for your post and for the lovely photographs. I am very busy today but I shall try to answer in more detail tomorrow. That book sounds very interesting.
Love and best wishes.
Sylvia xxxx
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Hello Kath,
It was so good to receive your post and to get an up-to-date accoung of what is going on in your country. We are getting quite a lot of news on the television showing protests.
I hope to be able to write in more detail tomorrow.
Love and best wishes.
Sylvia xxxx
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Hello Mary,
I am concerned that we have not heard from you and I do hope that all is fine.
I know that you have been having a lot of pain.
It would be lovely to hear from you.
Take care.
Love.
Sylvia xxxx
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Hello pkville,
I do hope you will get to the end of your ordeal with kidney stones. Apparently the pain from these can be really bad.
I do hope you will learn to worry less about breast cancer as time goes by. Try to focus on the positive and remember you have now gone four years since diagnosis. I was interested to read that you had had your six months check up with the oncology nurse practitioner. It made me wonder what is happening these days in the UK. When I was going through all this you either had a check up with your oncologist or her registrar and if I remember correctly you were able to ask specifically to see your oncologist. There seems to be a lot of use of nurse practitioners these days at GP surgeries. I think they have a lot more qualifications than a nurse has. I think when my husband and I went for blood tests recently, we saw a nurse practitioner.
I do not quite understand what your oncologist meant when she said that you should have done a better job of breaking down the tissue or did she mean that she should have done a better job?
I shall be interested to know what your son-in-law thinks of that book "Undying". As far as TNBC goes, a patient gets the same standard treatment as other breast cancer patients, that is surgery, chemotherapy and radiotherapy or a combination of these.
Love and best wishes.
Sylvia xxxx
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Hello Kath,
I do hope everything will improve with vaccination for the coronavirus in your country. I have been following the news about it on the television and have seen the protests. It sounds as though you are having tough time.
I do think it is about time our governments also paid attention to the other chronic illnesses that are killing people. We are not being given statistics about those.
Everything in the UK seems to be a muddle. It was a muddle at the outset with the coronavirus and it continues to be so. We are now being frightened into having a third dose, a booster so-called, not to mention the flu vaccine at the same time and they are scaremongering about a flu epidemic this year. Bribes of all kinds are being offered to get people to get first and second vaccines.
I do not think the NHS here will ever recover and I think the private health sector is getting overwhelmed as well.
That is about all for now. I feel quite low in spirits these days and do not like the way our government behaves.
Thinking of you and saying look after yourself and keep safe.
Love.
Sylvia xxxx
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Hello Sylvia,
Having arrived home I'm about to begin catching up on my emails/posts after an exhausting few days with two very active grandchildren. It rained every day, but visiting play areas and parks was absolutely essential just to burn of some energy - theirs not mine.
I agree that GB doesn't read well these days and neither does UK. Scotland and Wales are countries in their own right and as many Scottish people want to rejoin the EU I think the United Kingdom's days are numbered. I too have seen Scotland on a post rather than UK, so changing your details should be possible. I don't find the registration part of the site easy to negotiate and I couldn't find a way of adding metaplastic to my diagnosis. My cancer measured 2.4cms, but I couldn't manage to register the .4 and had to settle for 2cms. Small issues I know, but frustrating all the same.
My daughter remains exasperated by the poor quality of treatment for metaplastic breast cancer offered here compared to that offered in her area, where more detailed scans are undertaken to check for mets before discussing next steps. Her experience is that chemotherapy invariably follows surgery without the need for patients to seek second opinions or put up a fight. Aftercare is also excellent despite Covid. I still feel very let down and the battle for aftercare and even my annual mammogram will no doubt be a feature throughout my five years of monitoring. The phrase 'postcode lottery' is thrown around as if it's acceptable when it certainly is not.
My GP surgery is undergoing a staffing crisis with shortages across the board. It has far too many patients to deal with and has been denied a grant to expand despite the massive housebuilding projects forced on the area by the Government. It's quite possible that our local practice will have to close soon, with no viable alternative as all the others seem to be in a similar position. The Government is well aware of the situation, so I can only assume that it's part of the privatisation plan. Deny the NHS financial resources resulting in a breakdown of services followed by privatisation. I cannot begin to tell you how angry I am.
On that note I shall be off before I create any more doom and gloom - though I think feeling a bit dispirited on a Monday morning is allowed.
Wishing you and Raymond a safe and peaceful week.
Love,
Gill xxx
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Hello pkville,
Always good to see you on the thread and hear how you're getting on.
The photos of your grandchild are delightful. To travel so far when feeling so ill takes some determination. Seeing family, especially when you have such a young grandchild overrides most other obstacles for many of us. I'm so sorry that the trip wasn't as happy as it could have been though. I completely understand that you're apprehensive about the need to undergo another CT scan. I have my fingers crossed that the stones will have passed through by now. I've been told how excruciatingly painful kidney stones can be. You mentioned the inevitable concerns about what the original scan and cystoscope might have shown up. No test is ever simple once we've had cancer and the 'what ifs' creep in no matter how much we try to stay grounded.
I think that when you were told that you should have done a better job of breaking down the scar tissue, the oncology nurse probably meant to say that your body should have done a better job. The only instructions I was given after the mastectomy was to do the exercises provided in order to prevent cording. I still have occasional very sharp stabs of pain in the scar tissue and under my arm where the nodes were removed. It's always a concern but I haven't been able to discuss this with my breast surgeon since last October. We have an annual check and mammogram on the non mastectomy side every 12 months for 5 years. Patients are no longer given an ultrasound scan on the mastectomy side in England.
I hope you will be feeling much better very soon.
Love,
Gill xxx
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Hello Kath,
The situation in Australia is very sad and could have been avoided. I've no idea why your Government didn't roll out the vaccine programme earlier. Perhaps it was concerned about possible serious side effects from Pfizer and AZ and was waiting to see what would happen to people here before committing. No idea why the AZ vaccine received such a bad press in Australia and Europe. It's saved thousands of lives here and although it's still possible to contract Covid and transmit it, the incidence is much lower and hardly anyone who has had both jabs has died. The delta variant spread very quickly here amongst unvaccinated people. Whilst we do have anti vaxxers in England the problem is much less than that in America and Australia.
Burn out amongst health workers is very common in the NHS and I'm not at all surprised that Australia is suffering similarly. I hope you are able to take time for yourself when it's needed. The situation with notifiable diseases is concerning. I know TB in Australia is now rare, it would be a huge shame if the eradication process stalled when everything was going so well.
Keep yourself safe Kath.
Love,
Gill xxx
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Hello Gill,
Thank you for your latest post. The thread has not been the same without you. It is too bad that the weather was not good for you.
Raymond has tried to put my profile as I want it, but it just will not work. I cannot believe that I forgot to put it back in 2010 when I started the thread, but I think it was because I was starting it for mainly people in the UK. It is about time we had just one name for our Union or just put the part of the country where we live. I have always thought of myself as English.
It is strange that you could not put metaplastic on your diagnosis. I have got IDC right at the beginning. I have given up understanding the ways of the computer, which really are the ways of the programmers. A lot of it lacks common sense! When doing our Tesco order, it is unbelievable what can come up because of focus on one particular word. You could end up eating dog food sometimes!
I was interested to read about your daughter and the fact that NHS treatment is not uniform throughout the wrongly named Kingdom! I can understand how let down you feel by treatment etc. in Norfolk.
I do hope you manage to keep your surgery. I think it is a common problem that surgeries have far too many patients and a shortage of staff. Here in Exmouth they are building a huge housing estate not far from where we live, but there has not been, as far as I know, any extra surgeries etc. and no change in roads. I do not understand how these plans get approved. I also think we are heading towards privatisation.
I heard on the news today that Exeter has the second highest cases per capita in the UK. I am not surprised with all the clubs etc. There is a huge university and a college of Higher Education not to mention many schools, but I do not think much of that is functioning at the moment. I also heard about how Cornwall is getting overwhelmed with visitors and the residents are getting frustrated with it all. I should think it is much the same in Devon.
We still have not heard from Mary and I do wonder if she is alright. I do hope so.
That is about all for now.
Love and best wishes.
Sylvia xxxx
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hi Sylvia
Once again I've been sidelined, this time with an infected leg wound. About 11 days ago I went to my fridge to get out a large bowl of homemade soup. I dropped it and it fell on my shim, close to the bone. Large and painful, I cleaned it, bandaged it and moved on. About 3 days later I went to Doc, it was red and uigly. He sent me home with antibiotics. 2 days later on his off-day I went to emergency room, it was getting worse. They sent me home with stronger drugs. 3 days later I went back to my doctor, he said he thought I better get on a Penicillin derivative, since it was worse. If that didn't work I would be sent to Wound Clinic. So yesterday I went back for check-up and finally it is looking a bit better instead of worse. I'm sitting with leg elevated, per doctors orders. He warned me about side effects of Penicillin drugs but I am lucky just to be very tired. But I'm very relieved wound is better. And that no trip to Wound Center is necessary, I hope that stays true.
I hope all are well, I haven't caught up with posts yet but wanted to check in.
O our trip to NZ in December is canceled, its been unpleasant summer
Talk to you later, thanks for thinking of me!
Love, Mary
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Hello Sylvia,
Since our return to Norfolk we've had warm sunny weather, though it's a bit overcast today. We really could have done with the sunshine last week.
Mary's post was interesting, she seems to have had a very difficult time over the last year or so as far as her health is concerned. Thank heavens the soup she dropped was cold. I though her trip to New Zealand would be cancelled. It's just been announced that NZ's borders will be closed until the end of the year at least. I've just had to edit that last bit. A Guardian article records that there's good news from NZ as borders will be opened to those who fulfill certain criteria - jabs, Covid tests etc.
The Norfolk and Suffolk coast is overwhelmed by visitors. I shall await the rise in Covid infections. As the Norfolk and Norwich University Hospital is a Covid Hub, I doubt if this will help to shorten waiting lists. I think that it's about time that all NHS Trusts published the facts regarding waiting lists for diagnosis, surgery and treatment in major departments, cancer, cardio, and so on. The public need to know precisely what's happening. Johnson keeps on bragging about how much extra money he has poured into the NHS, but even the briefest examination tells a different story.
I'm beginning to wonder if there's a plan to get rid of GP surgeries altogether. Think of the money that would save! New housing estates are springing up everywhere, yet there are very few new schools and no new hospitals - weren't we promised 40 at one point? Developer's here always promise to build smaller low cost houses along with the huge overpriced 5 bedroomed monstrosities. In reality the developers usually get their planning permission then inform the planning authority that they can no longer afford to build the promised low cost homes. Despite planning regulations, they almost always get away with it. So, no small affordable homes, no new schools and no GP surgeries.
It is no surprise that Exeter has the second highest infection rate per capita. This is worrying for you and Raymond in the event of either of you needing hospital treatment. I understand that younger people enjoy clubbing, but surely the can see the dangers? Many will not have received their vaccination. My concern is that the selfish behaviour of some will result in another more serious variant. I don't suppose either of us will risk visiting the beach until the holiday season is over.
I have noticed that very few people post on the alternative treatments threads now. I used to take a look from time to time - not that I would ever have considered going down an alternative route. I wonder if fewer women are rejecting conventional treatments or if they go elsewhere to discuss these alternatives and possible outcomes?
That's about all for today. Hope you and Raymond have a good day, or at least a peaceful one.
Love,
Gill xxx
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hi Gill I read back on posts and see you had a family mini-vacation. That is awesome, and I am happy for you. I haven't been anywhere in months, I seem to be in a phase where I am being injured, I guess I should be grateful its not worse. I read on to see you are trying to find out more about metaplastic BC. Isn't it amazing, every spare bit of medical news seems to be about Covid. The big search engines are in a collaboration with government, they try to direct us where they think we should be, I have looked for some things and had to go through many back doors to find it. If I found it.
I don't think any of us have had a care-free summer, I read Adagios post and was very surprised to see she had a stroke. Your Michael had troubles with his heart rhythm, I hope that has settled down. I am trying to move more deliberately and think about what I'm doing in the moment, I've had enough of accidents, although I guess there's no avoiding some of them.
Onward and upward, I hope! It is very hot here and dry, (36 C) my flowers look awful, about time for a trip to dumpster with them! And then scuttle back to the AC.
I think of all of you a lot, sorry my posts have been infrequent, lately taking care of my dog and getting food for myself are about all I can manage. The Penicillin makes me tired but not sleepy, but I think its doing its job.
Talk to you later
Love Mary
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hi Adagio
I was very surprised to read you had a stroke, how frightening for you and family. And you say no real red flag showed up in tests, how mysterious. Glad you are home taking care of yourself, and glad you are determined to live with joy and vigor.
It is very hot here too, but we are promised a cooling trend for the weekend. It doesn't matter to me too much because I am not supposed to be on my leg much, makes it swell. I lie around a lot with leg up, my dog doesn't understand!
I am so very glad you are OK, anecdotally my brother in law had TMI about 10 years ago and has never had another, I hope you never have another!
Love, Mary
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Hello Mary,
I was so sorry to read about your accident with the large bowl of home-made soup. I do hope you have made good progress. It is good that you were able to avoid the wound centre. I do hope you will soon be back to normal.
You must be disappointed about your trip to New Zealand in December but I think the government there has been doing the sensible thing, unlike here in the UK.
I was glad to read today that you have been catching up with the posts. As you will have seen, it has not been very active.
Here in England it seems as though summer is drawing to a close. The schools will be going back about September 8th and I do hope they will get back to normal teaching. I hope it will be the same in the universities and colleges. There has been so much disruption.
As for the coronavirus, I think we just have to learn to live with it now. The latest I heard about the various vaccines is that they do not seem to be that efficient against this delta variant, but who knows where the truth really is? Here the system seems to be gearing up for flu vaccines and a booster coronavirus vaccine. They talk of doing them at the same time, but I have my personal doubts about subjecting myself to that regime.
The NHS is in deep trouble and all the news about it is doom and gloom.
That is about all for today.
Sending you love and best wishes.
Sylvia xxxx
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Hello Gill,
Thank you for your latest post.
As far as the coronavirus goes, it looks as though the cases and deaths are already beginning to rise. As we both say, it is not surprising. I have been listening to some of the news on GBNews and there was a lot about how the number of deaths from other diseases have been above normal this year. I do wish we could get more in-depth details about the number of people dying of cancer and heart disease because of waiting lists and of people not wanting to go to hospitals and surgeries because of Covid. These are the hidden coronavirus deaths.
There has been a lot of coverage too about GPs surgeries and how they need to get back to normal. Our surgery just does not answer the phone. Raymond wanted to ask our GP about something he had read this week on the pamphlet with his betablocker. Since there was no answer at the surgery, he sent an email online. The whole of the message when you phone our surgery is to go online. Ironically, there was a phone call from the surgery the next day, probably a receptionist, acknowledging the email. Raymond was told that his GP was not available to talk this week, that next week she would be away, and that she might phone when she came back!! There was no date or time given! It would not surprise us that our surgery disappears.
Like you, we are getting a lot of house building in Exmouth, but everything is big and expensive and there are no facilities being built with them. There are certainly no schools being built here. There is just one huge secondary school, an academy. It is supposed to be the biggest school in Europe!
We are steering clear of Exeter and Exeter Hospital. Neither of us has any need to go there. We have not been to the seafront in Exmouth in years. It is not the nice family-friendly place that it used to be and in the height of the summer it is always looking like a construction site.
I always look at the alternative treatment threads when I can and I am not surprised that it is not that active now. Orthodox medicine is so down on it. I would think that perhaps more people are taking alternative treatments, especially perhaps immune boosters such as pycnogenol and astragalus. I took them, as you probably know, before, throughout and after orthodox treatment. I also took Iscador.
The thread is not improving.
On GBNews this morning they were talking about breast cancer and the NHS and some drug, but I missed the beginning and so do not know what drug they were talking about. Have you any idea?
On one of the threads recently there were posts about patients having problems with high blood sugar levels and being diagnosed as pre-diabetic. Apparently this was being caused by post treatment anti-hormonal drugs.
It is a dreary day here today. We are still getting sudden downpours.
That is about all. Take care.
Love.
Sylvia xxxx
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Hello Sylvia,
A bright sunny day here, quite windy at the moment though. A good day for those of us who, like me, still hang our washing outside in the garden to dry.
I think the new breast cancer drug discussed on GBNews was Abemaciclib. This is now approved by NICE for use in hormonal+ cancer that has spread to other parts of the body and is failing to respond to other treatments. It's been waiting in the wings for some time but wasn't consider to be sufficiently cost effective for general use until the drug company agreed to do a deal with the NHS and significantly lower the price. Abemaciclib usually costs £2,950 for 56 tablets (excluding VAT) and two tablets are taken daily. Details of the deal are confidential. Abemaciclib offers patients more weeks of life. A CDK4/6 inhibitor, it inhibits proteins in tumour cells - proteins allow cancers to grow. The Chief Executive of Breast Cancer Now said it was 'fantastic news for thousands of women with hormone positive, HER2 negative incurable secondary breast cancer'.
I doubt that Abemaciclib will be offered in all Trusts as so many are struggling to keep their heads above water financially. It's probably something that women will have to fight for.
I read this morning that the new Chief Executive of the NHS is worried that people may not be reporting cancer concerns to their doctors and is urging the public not to ignore any suspicious symptoms. Chance would be a fine thing! Is this woman really that out of touch with reality? She should try to make an appointment at your surgery and mine isn't much better. She should also know that a GP's letter of referral no longer means that a hospital appointment will be forthcoming.
I didn't know that medication taken for hormonal breast cancers may result in a diagnosis of pre-diabetes. I hope women will ask to be tested regularly.
Enjoy your weekend.
Love,
Gill xxx
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Hi Mary,
I'm pleased to hear that the penicillin is working. Healing becomes slower once we're over sixty so you really need to stop having accidents! Thank heavens the soup was cold and straight from the fridge. I find that lifting hot food from the oven is a particular hazard so be careful. I've had several near misses in recent weeks myself.
You're absolutely right that this year seems to have been difficult for all of us particularly adagio, Raymond, Sylvia with her cousin's care to organise, Michael, yourself and I'm sure there are others that I've missed. A few days ago we discovered that a friend had died of Covid aged just 59. She'd been double vaccinated but had a history of breathing problems and pneumonia since childhood. A caring woman, she had helped to run a local foodbank for those in need. Life is so unpredictable for all of us.
Here in England we are also suffering from wall to wall Covid coverage in the newspapers. It seems to be either Covid or the Royal Family's latest Prince Andrew/Harry and Meghan debacle. You have probably read all about the Prince Andrew sexual abuse scandal. The public ran out of patience with him long ago and he should do the decent thing for once in his life.
That's about all for now. Hope life will run more smoothly for you for the rest of 2021.
Love,
Gill xxx
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Hello Gill,
Thank you for your latest post and for giving me the name of the breast cancer drug that was discussed on GBNews. All I can say is that it is very expensive and that having to pay £2,950 plus VAT for 56 tablets and to have to take 2 tablets a day, that is a mighty expensive drug for the NHS.
I wonder what the side effects are.
I do agree with you that it will be a drug that women will have to fight for. I do remember back in 2005 that women here were fighting for Herceptin. It is now given routinely for HER2+ cancer patients and of course has side effects. A friend of mine with triple positive breast cancer had it as part of her treatment but it did not stop cancer spreading for long. Her cancer came back rather quickly and spread to her liver, bones and brain. She went through a lot of treatment but died.
I understand how you feel about that new chief executive of the NHS worrying about not getting suspicious symptoms checked. As you say, it is a miracle if you can get through to your GP.
The news about coronavirus is not getting any better. I do wonder about the months ahead.
I see that our thread is not getting any better.
I do hope you and Michael will have a good week. I get to dreading what the day will bring.
Love and best wishes.
Sylvia xxxx
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Dear Sylvia, Mary, Gill and everyone,
A rare day to myself and thought I would just pop in and say hi. I’m afraid I haven’t caught up on everyone’s news, but will try to at some point.
You were all so helpful to me in those dark days when my mother was going through chemo Autumn 2018.
She is still here- and, as far as we know, no cancer recurrence, although it doesn’t stop me worrying periodically.
She did have a terrible time through chemo, and still has digestive problems and problems with low energy, though the first are managed and the second seem to have done a bit of a jump up recently. She walks 4 miles most days and occasionally looks after my 4 children( ranging from 8-12) so I guess “low energy” is a relative term.
She put on lots of weight due to lots of steroids to prevent sickness during the taxane period( she was allergic to all other anti-sickness meds) and I notice her breathing more heavily than she used to- but I guess being 11 stone plus rather than the 9.5 stone she used to be might have that effect.
But she is here, and has a very positive mental attitude and curiosity for life, which helps her a lot I think. So overall I am more pleased than not with how she is given the awful diagnosis in May 2018.
I do hope you have fared ok during the pandemic. Home-schooling 4 children was no fun, but has been rapidly forgotten. All the children are doing well, and are a source of exhaustion and delight in equal measure. We are thinking of adding a dog to the mix!
Are you still in Norfolk, Gill? Sadly my father, who lived in Aldeburgh, died last year aged 80 after a long decline, so I haven’t been there for a while. But we’ve got a memorial event this weekend so I’ll be travelling to the East Coast and the beaches once again.
Anyway I just thought I’d pop in to say hi, my mum’s still around and ( we hope) no sign of recurrence 3 years’ on. I’m glad you’re all soldiering on too.
Love
Flora
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Hello Sylvia,
The world seems to be a very dark place at the moment. I'm appalled by what has happened in Afghanistan. Those poor people, especially the women and children. Bush, Blair and friends should never have interfered in the first place. When will the West learn to keep out?
Abemaciclib will cost the NHS less than the list price as a deal has been struck with the drug company on the condition that the details of the price reduction are kept out of the public domain. I guess that the price drop must be significant or NICE wouldn't have authorised its use. I understand that the side effects are easier to tolerate than chemotherapy and the extra few weeks of life Abemaciclib offers will be of a better quality. It would be a small step in the right direction if women are able to access it.
I too wonder about what will happen next with Covid. There are too many people refusing to be vaccinated across the world and many countries that simply can't afford the vaccine. I'm concerned that this may result in another variant as serious as Delta.
I know what you mean about dreading what the day will bring. I'm always grateful to wake up at all some days. The aches and pains, dizzy spells and tiredness post chemotherapy are clearly going to stay with me for the rest of my life. On Wednesday it will be three years since my diagnosis, though it could have been just yesterday as I remember the day so well. I'm grateful that the Norfolk and Norwich has a one stop breast clinic. Being offered an examination, mammogram, ultrasound and core needle biopsy all within less than two hours helped a lot. I wonder if that still happens after Covid? The waiting room was absolutely crammed full of people for all my subsequent appointments with my breast surgeon and that will certainly not be the case now.
You sound as though you need a break from all the extra work you do at the apartment complex. Would that be possible? It's the same for us, the more we do, the more people expect us to do. Someone in the village actually contacted Michael last week about an overhanging bramble she saw when out for a walk and wanted him to go down and cut it back at once. He did, I would not have! We aren't the only people in the village with a pair of secateurs.
On that note, I shall go. Please try to have a peaceful week doing something you and Raymond enjoy.
Love,
Gill xxx
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Dear Flora,
Your post was a lovely surprise. I often wonder about you and your mother. I'm not at all surprised that she's doing so well, she always appeared to me to have a very strong spirit, despite the awful time she had with chemotherapy. Steroids are useful, but the weight gain they cause is depressing to say the least. It's so difficult to lose weight once we're over sixty too. I hope your mum's digestive problems haven't prevented her from enjoying the odd glass of wine.
I was sorry to hear that your father had died. I do hope that he had a peaceful end. Aldeburgh is such an interesting town, perhaps you'll still visit once in a while? I still live in Norfolk but haven't visited Aldeburgh since Covid struck. We usually go to Southwold, but the Norfolk coast is too crowded this Summer and is out of bounds for us now until the school holidays are over. We visited Southwold last Wednesday but couldn't find a single parking space anywhere at all and had to return home again. That was a first.
I'm pleased that you're children are all doing well after a very challenging school year. I'm very glad that I wasn't called upon to do home schooling, especially at a time when the museums were closed and we weren't supposed to travel more than five miles from home. Your brood are just at the right age for a dog. My daughter had a rescue cat and my son had a rescue dog. It usually means extra work for parents - especially when it's pouring with rain and the dog still needs walking, but worth the effort. Good luck!
Look after yourself and family and please give my best wishes to your mum.
Love,
Gill xxx
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Hello Flora,
Thank you for taking the time to pop in to say hello. It is always nice to know how people are doing as the years go by.
I was so glad to read that your mum is alive and well and that the cancer has not returned.
It is strange how chemotherapy treatment affects different patients. It is still quite early days since your mum finished her treatment so I do hope that the digestive problems will clear up. She might need some probiotic capsules to help build up a healthy gut, which would have been affected by chemotherapy.
As for the low energy, I think that tiredness can affect a patient for quite a long time.
I think that it is very good if she is walking four miles a day and occasionally looking after your four children aged 8 to 12.
I would not worry about the weight gain as it may come off in time.
I was sorry to read that your father had died aged 80. I do hope all goes well for your memorial event.
My husband, Raymond, and I have kept to ourselves during the pandemic. We think that in the end we shall all have to live with it.
A few months ago Sarah, in London, who also posted on the thread for her mother, popped in to say that all was well. It was good to hear from her. We do wonder what happens to people who have posted here and then leave, so we are always thrilled when someone posts in to say hello.
That is about all for now. Pop in whenever you have the time.
Love and best wishes.
Sylvia xxxx
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Hello Gill,
Thank you for your latest post.
I do agree with you that the world seems to be a very dark place at the moment. It is unbelievable what is happening in Afghanistan. I also agree that we should not have interfered in the first place, as I remember the men piloting those planes were from Saudia Arabia and Osama Bin Laden was in Pakistan. When will the West learn its lesson? We leave mess everywhere!
With breast cancer treatment I think early diagnosis and needing only surgery would be progress. Chemotherapy and radiotherapy are lethal.
As for Covid, I think in the UK governments are messing about too much. Nothing seems to work and I think we just have to learn to live with the virus. In this country today there is so much emphasis on human rights and not enough emphasis on responsibilities.
I do hope that your aches and pains, dizziness and tiredness will eventually disappear. It makes me realise how lucky I was not to suffer much at all during my treatment and afterwards. I was not even very tired and carried on much the same as usual. All I have long-term is very mild lymphoedema and the neuropathy in my feet. The neuropathy, I know, will not go away. It is a feeling of stiffness in the soles of the feet, rather than pain. I see a podiatrist regularly and she always gives me 10 out of 10 for the care and state of my feet, and tells me that I have a good pulse in them.
I can understand how you remember that first day of diagnosis. It is the same with me, sixteen years on. I doubt if it will ever go away.
I do not think I will get a break from my duties as a director at the apartment complex. Raymond and I have been here almost since inception and think everything would go to pot if we packed it in. We have very high standards!
Raymond and I both appreciated what you said about Michael and that overhanging bramble. We have both experienced many things like that here, even though we are supposed to be primarily administrators.
It is very autumnal here today. We hope it will keep people away from Exmouth.
By the way, I was listening to the 7 am news and the 8 am one, and was appalled to hear about the terrible state of the actual hospital buildings. They are actually falling to bits, with roofs being propped up, wards and theatres being closed, and bits of cheap concrete falling without warning. This goes back to PFI funding. I never trusted Blair and Brown. I remember Mrs Thatcher (not my favourite person) calling Blair son of Thatcher!!
that is about all for now, except to say I looked back to the end of December 2020 which was on about page 507 on our thread, and compared it to page 521 where we are now. That is just 14 pages in 7 months. The main regular posters from that time are you, me, Mary, Helenlouise and Kath and we are still the main ones. I saw the name cocolala and that got me wondering what had happened to her. I also saw the name Gamb and wondered what had happened to her as well. Pkvile – Paula, was there, and of course we heard from her recently.
Love and best wishes.
Sylvia xxxx
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hi Paula
Glad you had a break with a nice trip! I wanted to tell you also that I have had pain since right mastectomy. Also During chemo I tore my rotator cuff somehow, which didn't help. Ever since the side of my chest wall going up into the shoulder has been constantly painful. I am sure my pain is caused partly by shoulder and partly by perhaps scar tissue from breast removal, perhaps because of muscles and tendons being cut and I don't suppose I'll ever know for sure. The information I got after BC surgery on scar massage was very brief and heard through a haze of post-surgery drugs. As Gill says elsewhere, nothing is ever the same. I have had 2 shoulder surgeries and the pain is still with me on the side of my chest and travels lightly across breast area. Oh, and also in my shoulder ugh.
Other than that, I liked your pics, a nice beach and cute grandson with grandpa!
Later, love, Mary
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hi Paula
Glad you had a break with a nice trip! I wanted to tell you also that I have had pain since right mastectomy. Also During chemo I tore my rotator cuff somehow, which didn't help. Ever since the side of my chest wall going up into the shoulder has been constantly painful. I am sure my pain is caused partly by shoulder and partly by perhaps scar tissue from breast removal, perhaps because of muscles and tendons being cut and I don't suppose I'll ever know for sure. The information I got after BC surgery on scar massage was very brief and heard through a haze of post-surgery drugs. As Gill says elsewhere, nothing is ever the same. I have had 2 shoulder surgeries and the pain is still with me on the side of my chest and travels lightly across breast area.
Other than that, I liked your pics, a nice beach and cute grandson with grandpa!
Later, love, Mary
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