Calling all triple negative breast cancer patients in the UK
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Hello Gill,
Thank you for your latest post.
You are right about Exmouth. I looked at the seafront and it was very busy. I also looked at the main square and that was busy as well. It was mainly all about eating and drinking. It is no wonder there is an obesity problem. If they were not eating and drinking they were roasting on the beach!
We have been told that it can take a vary long time to recover from triple bypass surgery, both by the doctors and people we know here in Exmouth who have had this surgery.
I shall be very interested to know how Michael gets on. Raymond had an echocardiogram before all this happened and it was clear! He also had the 72 hour heart monitor and was told everything was fine except for the atrial fibrillation, irregular heart beat. They called it spasmodic. That particular consultant wanted to put him on clopidogrel, an anti-platelet and a statin. Raymond declined these and I suggested low dose aspirin and the consultant was fine about it. In fact he said how well Raymond looked! It was about five months later that he had some chest pain, saw the GP who diagnosed angina and prescribed a beta blocker, bisoprolol and the smallest dose of 1.25 mg. She gave him a spray to spray under his tongue if he had pain. He was doing fine and so the rest of what happened was quite a shock.
I do hope you get a proper diagnosis of the lump on your back. You need this for peace of mind. I was wondering whether you take steroids, as I remember they caused lumps of fatty deposits on the back of a cousin of mine who was taking them for COPD and probably asthma.
As for Dominic Cummings, I do think he was telling the truth. He was filling out what we already know. Starmer just does not have what it takes. He looks and sounds too establishment. I think a woman like Jess Philips would make mincemeat of Boris.
I think, when it comes to the discovery of lumps in breasts, you cannot take your GP's opinion about it. You need to ask for a referral to a consultant or at least to the breast care clinic.
I do hope we shall be able to get back to discussing breast cancer and TNBC in particular as this is what the thread is supposed to be about. I fear this will not happen with Covid-19 still very much in evidence.
That is about all for today.
Sending love and best wishes.
Sylvia xxxx
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Hello Sylvia,
All women must push to have breast lumps checked at the breast clinic. The Norfolk and Norwich University Hospital has a one stop breast clinic where all tests are undertaken at the first appointment. I saw the consultant, had a mammogram followed immediately by an ultrasound scan and core needle biopsy, then back to the consultant - all within two hours. The whole process was very well organised and saved me a lot of unnecessary stress. I shall expect my lump to be checked properly.
Sometimes I wish that I'd had a bilateral mastectomy. As things are, I find that my bra pulls itself round to the right and on the left mastectomy side it also also rides up. This is despite a prosthesis that is the size and weight of a normal breast. The problem's much more obvious during warmer weather with lighter lower neck tops. I wonder if anyone here has any good ideas?
Cocolala seems to have disappeared from the thread. I wonder how she's coping with chemotherapy? It's extremely difficult for some, while others sail through it. It would be interesting to hear her story.
I've heard that triple bypass surgery has a long recovery time for many people. As it's lifesaving surgery patients have no choice but to accept it. I'm hoping that it won't come to that for Michael, but I don't have much faith in either echos or heart monitors. They certainly didn't help Raymond. Michael should hear from the cardiologist this week.
Summer at last. It was very warm and sunny here over the bank holiday and looks as though it will last over half term. The garden's been very neglected during the cold wet Spring so I have plenty of catching up to do. Michael isn't at all keen on gardening and I'm beginning to think that I'd have been happier with a smaller plot.
That's all for now. Enjoy the sunshine while it lasts.
Love,
Gill xxx
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Hehe Gill and all,
How are you all?
Thank you for remembering me
I thought I would just dropped by to update, and I saw Gill's post just 47 minutes ago wondering about me.So far I have done 3 cycles of Paclitaxel, still got 1 cycle (3 sessions) to go then AC.
The rashes are less itchy now. They have moved from buttocks to my right breast (the one without surgery) and front of neck. I wonder why the rashes are moving from one part to another.
Although I faithfully bring ice packs to hospital, my fingers are having the tingling feeling. It's not too bad like some mentioned that they can't even do the buttons or zipper.
Last two weeks the surrounding of my PICC got inflamed after dressing changed by a 'rough' nurse. As I had Tegaderm with gel pad dressing, it's very sticky and she pulled the dressing so roughly my PICC line came out about 1cm and then went in again. She also cleaned very roughly and not detailed, and did not wait for the alcohol to dry before putting on a new dressing. So I went to hospital 2 days later to have my dressing changed again, to one that does not have gel pad. According to the head of oncology nurse, I might be sensitive to the gel pad. True enough, I always felt more itchiness when I have that. But I also think that the careless nurse is one of the reasons that I had inflammation. After changing the dressing, I saw some yellowish build-up, not liquid though, in the following days. I was so worried that it could be pus and I might have infection. Luckily it's not, they think it is just the dead skin that developed after inflammation, and for safe side I was prescribed one week of antibiotics.
Oh yea, I also started to have hot flushes since last week. Is this normal?
By the way, our country is in full lockdown for two weeks, starting today. Tomorrow is my chemo day, hope everything goes on smoothly.
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Hi cocolala,
That was a very quick response! Pleased that you've only had a few minor chemotherapy hiccups. I didn't have a rash, but I know that many people do - hope it's not driving you mad with itching. It's really disappointing when a nurse doesn't understand the need to be careful around PICC lines. The nurse you had needs retraining, PICC line infections can be extremely dangerous when patients are so vulnerable to infections of any kind. One of the nurses here didn't clean round the line at all, just changed the dressing. I also noticed that she didn't wash her hands between patients. I refused to let her near me for the rest of my treatment. My PICC line gradually worked its way out, a centimetre at a time. I was told that it was an infection risk to push PICCs back in. I had to go for an x-ray before my last dose of chemotherapy just to make sure the end of the line was still in a safe place.
I didn't have any tingling sensation in my fingers or toes, many patients do though. I'll keep my fingers crossed that it doesn't get any worse.
As for the hot flushes, I can't remember having them during chemotherapy, but did begin having them at night a few weeks after finishing. Night sweats also became an issue for a while. I found this strange as I was well past the menopause. It didn't go on for more than a few months.
England is partially out of lockdown and is due to be out completely on June 21st. This seems unlikely as the variant first found in India is spreading rapidly.
Hope the rest of your treatment goes smoothly and the fortnight of complete lockdown doesn't cause any delays.
Let us know how it's all going from time to time and stay safe - and well away from rough nurses!
Gill xxx
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Hello Gill,
I do agree about the importance of women getting breast lumps checked at the breast clinic. I know that the NHS system is such that everything seems to have to begin with a consultation with your GP, but we have to remember that GPs are not specialists. I remember going to the GP about my breast lump and she did the basic check and said that she thought it was breast cancer. She said the next step was to refer me for a check up and that it took two weeks. I decided to get a private consultation and the GP referred me to the one who worked both privately and at the NHS hospital. I was able to go straight from the GP to the consultant, who examined me and did a fine needle aspiration. She said she thought I had breast cancer but had to prove it. She made an appointment with her at her NHS clinic for the next day. At that clinic I had a mammogram, an ultrasound and a biopsy. After that I had to go to the consultant's clinic at the same hospital and she had the results. She told me what my options were and gave me two weeks to think it all over and come back to her. I did this and everything proceeded from there as told in my personal account which I have posted several times.
I do understand the problems with bras and mastectomies. I have been buying bras for years at M&S and sewing in my own flaps, but the bras suddenly disappeared and I could not find a suitable one. I obtained a catalogue recently from a company called Nicola Jane, the Post Surgery Bra Specialist, 01243 537300, nicolajane.com. There is a page in there "Our guide to a perfect fit" and there is a good selection of all kinds of post surgery bras. I chose one and it is fine for me, so you might like to have a look. You can even phone for advice. I hope this helps you.
I saw that cocolala responded to your comment about disappearing from the thread and I think you covered all of her concerns.
I do hope Michael will get his treatment sorted out soon so that he knows what he is doing. We all know the stress of waiting.
I do wonder where we are going with these variant strains of the coronavirus. I do not like the way the government is so indecisive. That is not what we want.
We do not seem to be making any progress with posts, so I can only assume that people do not need help.
Thank you for your dedication to it.
That is all for the moment. Keep safe, keep well, look after yourself and look after Michael.
Love and best wishes.
Sylvia xxxx
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Hello cocolala,
I am just popping into say thank you for popping in and bringing us up to date with your treatment.
I just wanted to say that I am wishing you all the very best during your treatment. You can get through this.
Love.
Sylvia xxxx
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hello all, we have had a small COVID outbreak in Victoria but hopefully the immediate lockdown will keep it under control. These new variants are proving to be much easier to catch. My husband and I had our first jab of astra Zeneca last week with no issue and are booked for the second shot in 12 weeks. There has been a level of resistance to getting vaccinated here. Which I don’t understand but think it’s because we have had so few cases and people are fearful of reactions. Plus there are those that think it’s some sort of sinister plot. Maybe this latest outbreak will motivate people. I had H&P treatment today and it really is just routine now. I am in and out in a couple of hours. I walk home from the hospital which is close to 4kms. Since all my latest test have come back ok I asked my MO for clearance to return to work full time, which I now have. Will go full time at the start of semester 2, mid July. I am looking forward to it. Winter is here now and we have had some grey days and snow falling on the alps. I must get out in the garden next sunny day, clean up the veggies and prune the roses. I harvested the last of the eggplants and made moussaka yesterday. I am already looking forward to planting new veggies in spring. My veg garden does not really get good sun in winter to it is time to clean up and feed the soil. I do hope everyone is enjoying some simple pleasures and you are staying /doing well. Best regards x
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Hello Gill,
Your post got me thinking about post-surgery bras and protheses. I have small breasts and have always worn a 38 A or 40 A bra. Thinking about what you said, made me realise today that my prothesis prescribed in 2006 after I had finished treatment was an Amoena, natura light, 2S390 size 6. This has been changed every three years, which is what a patient is entitled to on the NHS, but this time I have gone longer because at home I often do not wear it. Although it is supposed to be light, it is certainly heavier than my left breast. I did ask about prostheses last time in 2017, when I had my last one, and was told there were lighter ones. After a dialogue I was told the lighter ones were not suitable for me.
In the Nicola Jane catalogue I was looking at the page of prostheses on page 40 at the two Amoena ones and saw the one I have, Natura 2S Light Triangle but noticed there is also a Natrura 2SN Xtra Light Triangle by Amoena. For both the sizes go from 1 to 17.
I might ask about this at the breast clinic but I do hate having to go to the hospital to get one.
To buy they are very expensive. The ordinary light one is £155 each and the Xtra light is £160 each.
It could be that when I phoned the breast clinic back in 2017 that they did not have any of the Xtra Light and so told me it was not suitable.
I thought this information might help you and others.
That is all for today. It is quite a struggle and very tiring without a car and being vigilant about Covid-19.
Love.
Sylvia xxxx
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Hello Helenlouise,
Thank you for your post. I am out of time today but will reply tomorrow.
Love.
Sylvia xxxx
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Hello Helenlouise,
I was glad to know you and your husband had had your first jabs of AstraZeneca. Raymond and I have had our second jabs. I see that Australia is following the UK in doing the twelve week interval. I think governments should have abided by the original instructions and done the second jab after three weeks, but everything is political.
The Indian variant, now being called delta, is spreading rapidly here in the UK and I am not expecting the end of restrictions on June 21st as we were told. I think people are doing what they like anyway now. Exmouth beach and the town centre are full of people and they are certainly not doing social distancing etc.
I was glad to read that your treatment is going well and that your latest tests are fine, so you have been given clearance by your oncologist to return to work full time.
It sounds as though you enjoy your gardening. It is hard work but can be relaxing.
Keep up the good work and keep in touch.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
I hadn't heard of the Nicola Jane catalogue before, thank you. Marks and Spencer has such a small range of post surgery bras and the one type of prosthesis they sell is no use at all. Nicola Jane also offers camisole bras, these are so useful to wear with lower necklines. Marks and Spencer sold these for a very short time only. Prosthesis are much more expensive than I'd thought. The B cup I have from the NHS seems more like a C and I'm not entitled to another until next Summer. Very impressed that Nicola Jane offers advice on the phone.
Michael hasn't heard from his private cardiologist yet and I haven't heard from my breast surgeon either. All this waiting!
I don't think the NHS will recover from coronavirus. Deprived of funding for decades with no plans in place for the inevitable pandemic, despite warnings, everything now points to privatisation within the next year or two. Michael and I have opted out of the Government's plan to sell off NHS patients' data. We need to remember that it isn't totally anonymous as suggested by Government. Anonymising data is practically impossible according to IT specialists. It is very quick and simple to de-anonymise and our personal medical information will be seriously at risk. Our data would be extremely useful to the US once Johnson puts the NHS out to tender - and he will. Some GPs are refusing to have any part in handing over patient records and will not cooperate in an extremely risky scheme. Patients can opt out online before June 23rd so not much time. Even opting out doesn't ensure the safety of personal health records, as it isn't unknown for disaster prone hospital computer systemst to be hacked - so we our never completely safe. I take some small comfort in the fact that my medical records are almost certainly wrong !
I would imagine that your life has become more difficult without a car, especially as local stores close down forcing you to travel further to buy essentials. At least you're able to use online services, people who don't have a computer have been forgotten about. Many older people are being shut out from accessing ordinary everyday needs such as banking which is increasingly moving online, food ordering, GP appointments, hospital services and so on. Not everyone has family to help. In addition to all that, shopping and visiting the bank is partly a social activity, it gets people out and talking to each other. It's important to our wellbeing.
I saw that Exmouth beach was full yesterday afternoon. I'd be so bored sitting on the beach sunbathing. It poured with rain here throughout the afternoon and evening which was a relief as the garden was so dry.
Wishing you and Raymond a safe and peaceful weekend.
Love,
Gill xxx
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Hello helenlouise,
I was sad and more than a little perplexed by the resistance to vaccination in parts of Australia. It seems to be the only way back to living full (or almost full) lives again. The outbreak in Victoria should be a warning. I suppose those who are opting out are hoping that most people will have the vaccine and protect them once herd immunity has been achieved. Selfish and antisocial. Of course, all vaccinations carry a small risk, but Covid carries a huge risk, especially from blood clots, permanent lung damage and organ failure.
Congratulations on moving back into full time work. I remember you saying how much you enjoyed your job and missed it.
Enjoy your Winter gardening, not as much fun as planting, growing and eating the results, but still satisfying.
Hope you'll have your second vaccination before the 12 weeks are up, it definitely made us feel safer.
Love,
Gill X
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Hello Gill,
I am glad that you found the Nicola Jane catalogue interesting. It is probably better to deal with this specialist company.
I cannot remember what happened when I went to get measured up for a prosthesis back in 2006. I do not remember any mention of cup size. I just remember the nurse saying that I needed the size Natura 2S by Amoena. I think now I would quite like to try Natura 2SN Extra Light. I do not like dealing with the NHS because it is always a hassle. I would like to get one sent to me instead of having to go to the RD&E and I do not want to go to any measuring clinics! As you say, they are expensive. The Extra Light one is £160 for one. Do you think they are making a lot of money? I do not think the NHS will be paying Amoena that kind of price. I wonder how much they cost to make? In the catalogue I chose a bra on page 14, Anna by Anita, 90% cotton everyday bra, £25 white. It is a good fit. I also think Safina by Anita on page 15 looks good, as well as Hilary by Nicola Jane, front fastening bra in white, £22. There are other ones that are a lot more expensive.
I was so sorry to read that Michael has not heard from his private cardiologist yet and that you have not heard from your breast surgeon. All this waiting is unacceptable.
I agree with you about the NHS not recovering from coronavirus. I think we are going towards privatisation. Yesterday Raymond went online and registered to opt out of the government's plan to sell off NHS patients' data. It worked for him, but not for me. It came back for me that they did not recognise me. Raymond thinks this could be because I do not have my email with my GP surgery, but Raymond does and he does his prescription online. I do not know if this is the reason, but I do not have any prescriptions and that seem to make me a non-person! It seems quite bureaucratic for me to get registered. Do you have any ideas?
I know that there are errors in both our medical records, so as you say these records will not be a correct profile. Patients have no idea what is being said about them by their GPs and consultants behind their backs.
I do agree with you that people who do not have computers, tablets, or smartphones are being bypassed by the system. I know quite a lot of elderly people who do not have these things and so cannot get anywhere. As you say, we are being deprived of everyday shops which enable people to get a bit of a social life through their shopping. I do wonder where all this is going.
Exmouth is very quiet today and that is probably because it is not that sunny and half-term has also come to an end.
I am fast approaching 16 years since diagnosis on June 20th 2005. It seems a lifetime ago. I think the worst side effect for me has been the neuropathy in my feet. For many years it has not bothered me at all, but recently it has got worse. I have been told many times that there is no cure and I cannot think of anything to put on my feet to help. I just keep my feet well moisturised. I still have slight lymphoedema in my right arm, but it is not very noticeable and does not bother me that much. Again, I keep my arms well moisturised with unscented cream and do exercises whenever the arm feels heavy.
That is about all for today. I do hope the coming week brings some results for you and Michael.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
I was sorry to read that after almost sixteen years your neuropathy is becoming worse. There's no treatment for nerves that have been damaged by chemotherapy, but why has it become worse after so many years? It might be worth checking for possible underlying causes other than chemotherapy. I hadn't realised until recently that loss of balance was a symptom of neuropathy. This is my problem, but it didn't begin until about 12 months after chemotherapy had ended.
You're not the only one who hasn't been able to opt out of NHS data sharing because they seemingly don't exist. What a mess the NHS IT systems are in. I suppose you'll now have the bother of contacting your GP directly - good luck with that!
I watched Matthew Hancock address Parliament yesterday. Jon Ashworth asked a few questions in response, including something along the lines of, shouldn't the handing over of our NHS data be put on hold until we have all been properly informed about what it really means for patients? Also, why wasn't it and the opt out more widely advertised? Hancock and co were hoping to pull off a data grab under cover of Covid perhaps?
Michael still hasn't heard from his cardiologist and I haven't been offered an appointment at the breast clinic. I know so many people in a similar position. It's not just the NHS, the private sector is also very slow. I fear for the future of health and social care and can see no light at the end of the tunnel once the pandemic is over. Matthew Hancock is no longer wearing his NHS badge, is this a message or has he just mislaid it?
I'm afraid that there's very little to say about breast cancer at the moment. Either nothing is happening or what is happening isn't being reported. As a thread, we really do need more recently diagnosed women to comment and let us know their experiences.
That's all for now.
Hope Exmouth beach is less crowded now that half term's over.
Look after yourself and Raymond.
Love,
Gill xxx
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Hello Gill,
Thank you for your post.
I did manage to get in touch with the surgery via their website and I gave them my email address and then tried again opting out online but it still did not work. It seems for some reason that there was a problem. It now seems via an email that I was already opted out by them. With the NHS bureaucracy who knows what is happening!
I do not believe anything Johnson, Hancock, Gove et al say. I long for a general election and another referendum on Brexit. I have just watched the President of the USA and Johnson clowning around in Cornwall and their wives strolling along on the (deserted) beach and I cannot quite believe they represent their countries. As for pretending to be Churchill and Roosevelt at the end of WWII, well it is just unbelievable. In order to accommodate all the people involved in this publicity stunt the homeless put up in hotels have been thrown back on the streets.
I have just looked at the news and saw that the waiting list for non-emergency surgery and treatment was 5.1 million as of April.
I can well believe in this funny old country that Michael still has not heard from his cardiologist and you have not been offered an appointment at the breast clinic. I cannot see how any of this is going to change.
Yesterday Raymond and I had the wonderful experience of going to our surgery for his annual review. It was a waste of time. The highlight was when the nurse conducting this, who weighed at least 20 stone, asked Raymond to rate the diet that he was on! Iwe just shouted out in harmony "excellent"! There is so much more I could relate but I just feel too tired.
We did have a little wander in the town afterwards, as the surgery is close to it. We were not very impressed. The big open square has been turned into an all you can eat and drink fest! The centre has lost all the quiet dignity it used to have. We were glad to get back home.
As you say, the thread is absolutely dead and the whole triple negative forum seems to have gone to sleep.
That is about all for today. Take care.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
I thought that you might be interested in this -
https
/www.itv.com/news/2021-06-03/scientists-hai... A friend with triple negative cancer forwarded the link to me. It appears that Olaparib (parp inhibitor) may improve survival if given to all TN patients immediately following chemotherapy. The trials are looking very hopeful.
Oh the irony of a morbidly obese nurse asking Raymond about his diet. It's worrying that we have so many seriously overweight nurses in NHS hospitals. I'm guessing that with hospital canteen food being so poor, most nurses and HCAs are opting for the unhealthy snacks available from the many on site food shops. Bought in sandwiches and filled rolls have a dubious reputation, I wouldn't risk eating them. When I was an in patient, Michael took his chances with a salad baguette and was ill during the night. Never again.
I'm still waiting for the breast clinic to write, but with over 5 million on the waiting list I'm not hopeful. Breast cancer clinics were crammed and waiting lists for treatment long, even before Covid struck.
Michael has received a letter from his private cardiologist. The tests showed that his heart appeared to be healthy for his age. It seems that he needs to be seen during an event - that's why I took him to A&E immediately at the time of the attack! Why didn't the cardiologist look at the tests undertaken then? Neither of us are reassured. My daughter advises calling an ambulance should there be further problems.
I've noticed from the Exmouth webcam that more outdoor tables have appeared in the square. Tables are appearing on the pavements of Norwich too. So many of the roads in the city centre are cut off to traffic now and the Council is actively encouraging outdoor eating and drinking. Should be interesting to see what happens once the cold wet weather arrives. We have a huge and growing number of cafes and restaurants here and they appear to be doing well during all this warm weather and the enthusiasm generated by the opening up of the hospitality industry, but I doubt it will last.
I agree that the G7 conference has solved nothing. I would have thought that sending vaccines to poorer nations would be happening now, not sometime before the end of the year. Everything happens too slowly. I'm now waiting to see if Covid infections rise in Cornwall as the gatherings must have exceeded the 30 only rule the Government insists we follow.
Another hot day here. The garden's very dry so we could do with some rain now.
Hope you both have a peaceful week.
Love,
Gill xxx
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Hello Gill,
Thank you for the link. I shall try to read it during the weekend when I have more time. I do know that PARP inhibitors have been around for some time. I still feel that, if you have got through standard treatment for TNBC and have finished with no evidence of disease, it is good not to have to be on any kind of medication, let your body recover while you get back to a normal life. I feel great sympathy for those with hormonal breast cancer who are automatically put on nasty drugs for about ten years and probably more. I have always felt positive about being negative status and doing all I can to keep myself healthy.
I have noticed that the busiest threads on the forum appear to be the ones for those with metastatic cancer who are going to be on all kinds of drugs and treatment probably for ever, with rest periods to allow their bodies to recover. I have a good friend who was diagnosed with hormonal breast cancer, but not HER2+, in 2001. She was doing alright but of course on anti-hormonal medication and then after about seven years it came back and it is in the bones. She has been on all kinds of chemotherapy, oral and intravenous, as well as radiation. She has rest periods, but not very long ones. She seems fine but of course the drugs do wear her down, but she carries on. Her metastases are in the bones. She keeps to a healthy diet and she walks everywhere, runs, cycles and keeps very cheerful. She has been in this cancer cycle for twenty years and is also on bisphosphonates to help with the bones.
I do agree with you about hospital food. When I was in hospital Raymond brought in food for me and while he was in hospital in Exeter, I took food into him.
I was sorry to read that you are still waiting for the breast clinic to write, but not surprised, given that we are told there are over five million on the waiting lists.
I was glad to read that Michael had received a letter from his private cardiologist and that the tests showed his heart appeared to be healthy for his age. I wonder if the NHS cardiologist has not yet released the results of the test. Who knows what bureaucracy is going on. Something must have happened with Michael's heart otherwise he would not have ended up in A&E.
You are right about all the outdoor tables in the main square in Exmouth. We do not like it at all. We preferred the small square that we had before where you could sit and relax in quiet contemplation. It has been turned into a cafe culture, but it is not like the French! Thee are gulls and pigeons everywhere as well. It is not our scene at all. With so many obese and overweight people it does not seem morally right to have so much emphasis on food and drink.
Here we go again, with another date for freedom day. If only this government had done things right at the very beginning of this pandemic.
It has been very warm here but not hot. It is, however very hot in our apartment even with all the windows open.
It is disappointing that we have not heard from Mary or adagio, but I suppose they get caught up in their own private lives. It looks as though we are heading into some bad weather on different continents, but we badly need some rain.
That is about all for today, but I do appreciate so very much all the effort you make on the thread.
Take care and keep safe. Do not let Boris get you down. He did not present a very good image at the G7. He lacks dignity and is always seeking attention.
Love.
Sylvia xxxx
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Hello Sylvia,
Thank you for your latest post. It's been quiet on the thread before, but never like this. As you pointed out, all the threads seem to be in a similar state, apart from those dealing with metastatic breast cancer. I've always found the whole site to be useful and informative and honest, it would be a great pity to see it fizzle out. I'm not impressed by the patronising approach of the better known UK forums, especially Macmillan and Cancer Now. They take a 'one size fits all' approach to answering questions, when the reality of chemotherapy and other interventions for example, shows that there can be a range of hidden or rarely spoken about problems along the way. My many bouts of post chemotherapy sepsis for example. Just how rare is it really? Filgrastim will build up white blood cells, so it's not really a problem. Well that's not always the case and where Filgrastim fails, patients often become extremely ill. Some die. Taking universal antibiotics for sepsis, that's common enough, but after 3 separate bouts if sepsis and 3 separate lots of universal antibiotics, the good bacteria in the gut will probably have been killed, leaving the bad bacteria like C difficile to run riot, with very few white blood cells left to fight it. Why on earth are we never told about the dangers of chemotherapy? Too many breast cancer forums take a soft approach to questions about the possible side effects of chemotherapy. When patients ask for the facts, they should not be fobbed off.
When we were out on Thursday, the Hospital telephoned. No idea weather the call was for Michael or me and we are no longer able to call the separate clinics to find out. No one phoned back on Friday. It will be a month on Monday since my GP referred me to the breast surgeon.
You were right about June 21st. Johnson worked hard to ensure that the Delta was in England and spreading before putting India on the red list. Even then, flights from India remained regular, so I have no idea why the red lust even exists. Anyway, we're now well into the third wave and Norfolk is experiencing rises in most areas. We are also below the national average for people fully vaccinated with two jabs.
It's been raining here for several days, not good for hanging out the washing to dry, but the garden needed it and the farmers will be pleased.
Enjoy your weekend.
Love,
Gill xxx
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Hello Gill,
Thank you for your recent post. I do agree with you about the thread. Like this I do not think it will continue much longer. It is not just our thread, it seems to be the forum in general. It could be that everyone is just tired and fed up. Coronavirus must have taken a toll on people because worldwide it seems to have taken over people's lives. Facebook has also taken over people's lives in a way that I do not quite understand. It is certainly not for me.
I do agree with what you say about other breast cancer forums. I do not like this attitude of one size fits all and I have certainly seen this in the NHS with Raymond.
As for chemotherapy, to me it is obvious how dangerous it is and I was very reluctant to have it. I do remember being told at one of the check ups before a session of chemotherapy that it was dangerous and that there were fatalities. I suppose each patient has to make a choice and often it is not much of a choice. All you can do is have surgery and take a chance and refuse the rest of the treatment. I think that most of us will be too frightened to take that chance.
I do understand what you are going through with your experiences with both the NHS and private sectors. Raymond and I have been frustrated with our experiences with our GP surgery. Most of the time on the phone we get the busy tone and do not even get through to the menu. If we do get through to the menu we have to listen to long speeches about Covid and the way the surgery is now being run. We wait and wait and then we get cut off. I finally decided to go online and use e-Consult and persevere. Raymond did the same and we went for the admin section and asked for the results of our recent blood tests. We immediately received a phone call and a receptionist gave us a brief answer. We have both requested complete details about our blood tests, either in the post or through email and we are waiting to see if this happens.
We also requested at least a telephone appointment with our GP. That came back pretty quickly via the phone and we have been given a telephone appointment for June 29th, late morning. We are not sure whether that is meant for one of us or both of us. We went for our blood tests on June 9th and now we have to wait until June 29th to talk to our GP!
We might as well say that we have no health service at the moment.
As for the coronavirus, goodness only knows where we are going. It was all messed up at the beginning, an Eton Mess! I really long for a new general election and a new referendum on Brexit. Boris and his not so merry men need to go!!
What do you think about the fact that the former Speaker, John Bercow, has joined the Labour Party? I know that his wife is a member of the Labour party. I thought John Bercow was an excellent Speaker. I think Keir Starmer will have to go but I have no idea who can replace him.
At long last we had a lot of rain last night and through the night. We needed it so badly. Today it is quite cool and murky. Raymond and I just had a look on the webcam and all is very quiet.
I do hope some progress will be made for you and Michael with your treatments.
I just want to add that it is 16 years today since I was diagnosed with breast cancer on June 20th 2005. It seems such a long time ago. I was told that it was non-hormonal, that it was negative for oestrogen and progesterone and that the prognosis was not good because they could not give me anti-hormonal medication as it would serve no purpose. I have survived this long, coping very well making food my medicine and medicine my food. I have always been positive about being negative and I am glad that have had no medication to take post standard treatment of chemotherapy, surgery and radiotherapy. I still take nothing for granted.
That is about all. I hope you are having a good weekend.
Love.
Sylvia xxxx
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Hello Sylvia,
Congratulations on your 16 year anniversary. I can understand that you take nothing for granted, I don't think many of us do after a cancer diagnosis.
I sympathise with the problems you have with seeing or even hearing from your GP. He/she is probably working flat out, as once GPs receive an email from a patient, it must be dealt with within two days according to new rules. Pre Covid we phoned the surgery for an appointment which could be one to four weeks later and this could be managed. The new system could never work and has resulted in GP burnout and patient anger and frustration. My daughter is having a very difficult time and is terrified of missing something serious. Hospital referrals are made, but often receive no response or a very late one. I believe that the changes to GP services was designed by a Government determined to sell off our NHS. Covid has been an enabler. Johnson deliberately allowed the Delta Variant to enter the country and even when it was spreading, he kept the flights coming in. We're an island, we could and should have prevented this.
A bad day yesterday. I discovered carpet moths in one of the spare bedrooms. Lifted the carpet to find they where underneath all the furniture. Went to John Lewis to buy several bottles of their lavender scented carpet moth killer. Put them in the boot and slammed it shut while the fingers on my left hand were still inside. The pain was indescribable and left me faint and nauseated for a few minutes. Spent the rest of Monday hoping that there was no truth in the old adage that bad things come in threes!
I was interested to see that John Bercow had joined the Labour Party. Ken Clark has also made some very scathing comments about Johnson. This Government is not Conservative. Cabinet ministers are concerned only with self enrichment and selling off what the public once owned and paid for through taxes. We really need the more decent Tories to revolt and demand that Johnson and co resign.
Still not heard from the breast clinic and don't really expect to. My daughter tells me to pay for a scan just to see what the lump comprises, but unlike the PM, I don't have my own money tree.
I do hope yours and Raymond's week got off to a better start than mine.
Love,
Gill xxx
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Hi, Sylvia and Gill and others
Once again, the time has slipped by, I suppose I have been busy. I have quiet time in the evening but usually not up to writing, except for short text messages. I do not even like talking on the phone in the evening, I just get very tired. Today I had to make a trip to town, I dropped the dog off at playcare and I will pick him up later. He does take up a lot of time for a small creature!
Sylvia, congratulations on your Cancerversary, 16 years! I am also sorry about the Neuropathy getting worse, mine is with me every day as well, it's a constant reminder of those dark days 7 years ago. It's funny, while I am walking I don't notice it except that my legs get very tired; once I sit down the prickles and sometimes crampy, sometimes burning feelings return. I suppose I am used to it somewhat.
I also wear a prosthetic in my bra, and Amoena is a very familiar brand. I need to call the place back where I got them, since my Insurance pays for a new one, or two, every other year. I am way over that time, I should be eligible, and also for a new pad.
I need to get some work done out in the yard, we are coming out of a heat wave that was just enervating. I felt like my brain was cooked. We are also unusually dry for this time of year, this is a combo of things I don't like, heat and dryness.
Gill, Sorry your day has been difficult, those finger jams are dreadfully painful, I agree. Haven't heard of carpet moths, but I have already had my fill of insects this summer! I always wish for you that you could have more responsive care at your Clinic, I think I agree with your daughter, on checking out the lump.
I will close now, before the website eats this post, just noticed I forgot to compose it in Word, so you never know!
I will try to be back soon, with any luck later today.
I think of you often! Love, Mary
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Hello again Sylvia and Gill,
I did want to tell you that I had my latest appointment with the oncologist. She was new to me, the other one moved on. This young lady was completely charming, she seemed more interested in me and my case than anyone else ever was, I guess she has a good bedside manner! I was sad to hear that she is also leaving this job because of moving on with her boyfriend to New York City. I will see her once more.
I thought it funny that she said, after looking at my chart and seeing I am 7 years out, "I guess you are cured!" I told my acupuncture doc and he thought she shouldn't have said it, but I enjoyed it for a change! My MRI was clear, as was the physical exam. She was surprised that my 1st Onco gave me all 3 cancer drugs together for the 1st session. She thinks that is definitely why I got the Neuropathy, she is not afraid to speak out. She was a breath of fresh air. So onward, I am scheduled to have a Mammogram in November and will see her again after that, for the last time probably.
Talk soon!
Love, Mary
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Hello Sylvia, Gill, Mary and all
I was thinking that 2021 would be a better year than the previous year, but it has been challenging, sad, and stressful. Easter weekend my daughter in law's father passed away from complications of a valve replacement- his body went haywire and the doctors had no explanation for his reaction to the surgery other than he had had COVID 5 months earlier. Our dear neighbor passed away the same week and my dog groomer died on Easter morning. A month later my brother in law died from congestive heart failure. And then this past week my daughters childhood friend committed suicide. It makes one question so much about why we scurry around doing everything we think is so important. I'm just so sad for all of this loss, for my daughter in law losing her father who was the same age as I am 64. For our neighbor losing her beloved husband, my husband losing his older brother and now the family of this young man who killed himself. So much loss and so much sadness. Of course it's part of life but it sure has hit close to home. All in the midst of this crazy world trying to deal with this pandemic or people not dealing with this pandemic. It creates so much anxiety, but I'm so tired of the division of politics regarding this issue.
I do continue to come back to this thread to read your posts often hoping maybe there is new information about TNBC. I enjoy hearing about your lives in England and am sadden by what I read as your country is succumbing to politicians mishandling of important issues. It's almost as if government and politicians are just clowns and that say and do the most outrageous things. It's that way in the US as well.
I'm sorry Gill about your husbands cardiac condition and the lump that you are unsure of and your poor fingers, ouch that had to of hurt so very badly!
Sylvia , congratulations on your anniversary of survivorship! My 4 year anniversary is coming up… I'm hoping it's still true that if it hasn't come back in three years it typically won't come back. Maybe I'm just an anxious person.
It's been a hard 3 months, even if I don't post I'm still visiting and reading your post!
Best to you all!
Paula
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Hi Paula
I'm sorry that so much sadness has touched your life recently, as if dealing with the pandemic wasn't enough. How is your son, is he still dealing with a lot of the virus at the hospital?
The news in TNBC seems to be mostly in the metastatic area, treating these progressions with immunology drugs. Perhaps I am missing something however, coronavirus has taken over the Healthcare News.
I also think that our political class and most of the media are sowing discord, they are seemingly pitting people against each other. I'm finding it hard to feel lighthearted in my daily life. But I'll keep trying.
I hope you and your friends and family find some comfort from the many sad events that have occurred.
Talk later,
Love, Mary
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Hello Gill, Mary and Paula,
I was so pleased to see our thread come to life a little today. I have had a very busy day so I hope to make it a priority tomorrow morning to answer each of you.
Gill, thank you so much for the great effort that you put into the thread.
Mary, my faithful friend, I was glad to see you back with us again.
Paula, it was lovely to see you posting again and my heart foes out to you for everything that has been happening. Look after yourself.
It has been one of those days today and I am going to sit and relax for a couple of hours as I seem to have been on the go all day. I am going to watch some of the new news programme, GB News headed by Andrew Neil. I like his part of the programme, 8 pm to 9 pm. For relaxation I am going to watch Forces TV, showing a comedy from the 1970s, Citizen Smith. It is brilliantly funny, but really deeply serious. I do enjoy it.
Love and best wishes to all three of you and talk to you tomorrow.
Sylvia xxxx
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Hi Mary,
So good to hear from you - and Paula too. The thread's been far too quiet for months now.
I know you were concerned about having a new oncologist, but it's really bad luck to find that she too is leaving. She sounded like a breath of fresh air and quite able to speak up for herself and for you. I do think that some patients are over treated. After all, triple negative b/c responds so well to chemotherapy that there's really no need to overdo it. Your original oncologist sounds like she was treating the cancer but forgetting the patient. Quality of life matters.
You're very fortunate never to have heard of carpet moths, long may you stay in ignorance. I've now found them in three other bedroom, so yesterday was taken up by lugging heavy furniture about, lifting carpets and spraying moth killer over everything at floor level. Also found two very large fast moving spiders behind the dining room curtains. I don't mind spiders in the garden, but draw the line at them moving indoors. Even worse if they find their way to the bedroom which they often do.
The weather here has been much colder than is usual for June. Even so, I wouldn't have swopped it for your heatwave. Hope the farm has recovered - and you. Prolonged hot weather takes every ounce of my energy and I usually stay inside. No idea why so many of us here flock to unbearably hot countries for their holidays and come back burnt to a crisp.
I've never heard of doggy playcare before. I'm guessing that it probably involves socialising dogs and getting them used to being away from their owner. I know they're a lot of work, but you do have a faithful companion to keep you company and tell you if there's someone outside. My cats do both of those things, but are probably only in it for the food and because I let them sleep on the beds during the day. I don't recommend allowing cats on the bed, but in the battle to keep them off, they won.
I hope your shoulder is giving you fewer problems now. That was quite a long and painful journey you went on to get it working properly.
Take good care of yourself.
Love,
Gill xxx
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Hello Paula,
It's always good to hear from you. I'm so sorry for the dreadful time you and your family are having. So much loss in such a short time is very sad. Added to all that grief is the loss of your daughter's friend. It's tragic for everyone when someone takes their own life, so many questions are left unanswered - why didn't they ask me for help, why didn't I notice something was wrong? I hope his family and all those who knew him can find peace eventually.
I haven't read anything about breakthroughs in the treatment of triple negative cancer other than the link to an article I gave on one of my posts last week. It seems that if the parp inhibitor Olaparib is given to all patients immediately following their course of chemotherapy, it increases their chance of survival. It's too late for us, but newly diagnosed patients may be interested. It's worth reading the article I think.
I really hope that life is much kinder to you and your family for the rest of 2021 and beyond.
My very best wishes,
Gill X
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Sylvia congrats on the 16 years. You are an inspiration Thank you and Rosiecat for keeping this thread going. I rarely post on the threads, but I have this thread marked in my favorites and I read it daily.
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Thanks for putting the thread on your favourite list. It's good to know that people are still taking the time to read comments. I just wish there was more breast cancer news to write about, but there's very little in the press these days. Maybe after Covid......
Keep safe and well.
Best wishes,
Gill x
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Hello Gill,
Thank you for your post of June 22nd.
With reference to what is going on with GP surgeries, I think it has all become a bit gimmicky. I think things are being done because technology allows it and not because it is useful or needed. I feel very sorry for all those patients who do not have computers, tablets or smartphones because they are being pushed out of the medical system. Trying to get anywhere on the phone does not work. You also lose the human interaction. I took a long time the other day studying the website to our particular surgery. I filled in all the questions that you have to on their blue e-box and was then able to send an email. I received a reply to it within an hour. The response was not that useful. I then got Raymond to do the same for what he wanted to know. The result of that was that we have a combined telephone appointment with the GP late on the morning of Tuesday June 29th. That is a wait of 11 days since I did the email. I shall see how that goes. I did put on a survey of the present system that I was requested to do that I thought nothing was better than a face to face appointment with your GP.
Raymond filled online an update of his medical details with the surgery and would you believe one of the questions, and I quote, "waste measurement"! You would think they would get their spelling right!
We have been requesting the full details of our recent routine blood tests and so far no response. It looks as though the only way to do this is to go through the procedure of requesting to have your details available for viewing online. We are trying this but so far no luck, especially for me. I seem to be a non-person in the medical system because I am not on any prescription drugs.
I do know that carpet moths have become a big problem and have been so for a few years. We replaced our carpet in 2016 and we were advised to go for synthetic carpet. The company told us that lots of customers were coming in to report holes in their wool carpets. I think he said the moths were coming from Spain, but I am not sure.
I was interested about John Bercow as well. Let us see what happens.
I do not think there will be much news about developments in breast cancer care and with triple negative I think the drug companies are anxious to find post-treatment drugs to make money. I think the standard treatment of surgery, chemotherapy and radiotherapy will be with us for a long time and I think that all of us will have to keep a close eye on our breasts and listen to our bodies and take action if we think there is anything that is not normal. If we can get treated with just surgery then that is a big gain. With any abnormal signs we must take action. Perhaps we would be better off having regular ultrasounds rather than mammograms, which are not reliable and are damaging.
I did read on another thread information about some kind of radiotherapy being done in the US that seemed to be a more shortened version.
I have to end now as I have a lot to do.
Sending you love and best wishes and I shall try to post some more a bit later.
Sylvia xxxx
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