Calling all triple negative breast cancer patients in the UK
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Hello cocolala,
Thank you for your latest post. I shall be thinking of you tomorrow as you go through your surgery. Please let us know how you get on.
Love and best wishes.
Sylvia xxxx
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Hello Gill,
Thank you for your post on January 29th.
I am not sure what to believe about what is going on with cancer treatment in general, but I do get the impression that it is not all going to schedule and that there is a lot of catching up to do.
Raymond and I have just booked our vaccination appointments for this Friday. We have opted to go to a local pharmacy rather than the mass vaccination place here. It will be easier for us.
I did have a note from adagio to say that she is recovering well, but is tired. She is following the thread but does not feel up to typing. I am sure we all understand that.
We have the same dreary weather here and it does make you feel in a low mood. Raymond and I are about to make ourselves go out for a walk. I bet we get caught in the rain!
That is about it for today.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
Thank you for letting us know that adagio is safe and recovering well. I'm wondering how Mary's cataract operation went and also thinking of cocolala who has her surgery today.
I was pleased that you'll be having your vaccination on Friday. I had no choice about location and would have opted for the pharmacy had that been possible. Of course, we now have the news that the Kent variant has undergone a worrying mutation. Will the vaccines still work? No one really knows for certain, but we are being told that 'it should'. I have no idea what this positivity is based on and feel a bit depressed about it all. I'll still have my vaccination, but this latest information doesn't fill me with confidence.
There's not much news about breast cancer. I'm as frustrated as ever that the general public still has little idea about the many different types of breast cancer or the realty of breast cancer. I've no idea why cancer charities aren't being more proactive about getting this information across. In the last twelve months I've been told that 'although my hair hasn't come back as thick as it used to be, at least I'm cured of cancer' and 'I was lucky that breast cancer is one of the curable cancers' and 'I've had friends with breast cancer and they're back to normal now'. Setting people straight would probably result in my being labelled a drama queen. This misinformation makes life so much more difficult for those diagnosed with this dreadful disease.
Good luck with your's and Raymond's vaccination on Friday.
Love,
Gill xxx
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Hello Gill,
Thank you your post on February 2nd. The thread has gone completely dead since then. There has been no news from Mary, so it could be that she is having to rest her eyes. Cocolala has not replied but she could be recovering from what I understand to be long surgery when you have reconstruction with your breast surgery. At least we know that adagio is recovering.
I sometimes wonder whether this thread has now served its purpose, because there is so much information out there now about breast cancer with triple negative receptors.
I think that everything has been taken over with the coronavirus SARS2 that we have called Covid-19. We now have the battle of the vaccines and Vaccine Nationalism. We seem to be at the forefront of it.
Raymond and I had our vaccines on Friday and all was fine. We feel just more tired than usual and a bit heavy headed. We did have the Oxford vaccine as we suspected we would and now there is all doubts about it for our age group and whether it is any good for the variants. I have doubts about all of it as I think it was all pushed out too fast.
As for breast cancer, I do agree that there is not much news about it. On the other hand there is plenty of news about how neglected cancer patients in general are being treated as Covid-19 takes over everything. It is true that there is little news about the different types of breast cancer and everything seems to be characterised as hormonal or non-hormonal.
I do understand what you mean about what is said to cancer patients about what has happened to them. Of course, we all know that we are not cured and that we have to live with that fact. There is no point in trying to explain to people who have not been through a cancer journey.
We have woken up this Sunday morning to a dry sunny day and that makes a welcome change. I think you have probably woken up to snow.
Let us hope we shall hear from our normal group of people, Mary, Helenlouise, Kath, Jags56, and, hopefully, adagio. I know Peter will pop in if he thinks he has something useful to say.
That is about all for now.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
Pleased that you're both feeling reasonably well after your AstraZenica vaccination. I read a report this morning that while the AstraZenica vaccine doesn't work particularly effectively against the South African variant, it does seem to keep people from becoming seriously ill and needing hospital treatment. AstraZenica is already working on a modified vaccine to combat the South African variant and this is likely to be ready by Autumn. Heaven knows how many new strains will have developed by then. I haven't heard anything about the efficacy of Pfizer against new variants.
Apparently breast cancer and colon cancer patients have been the most badly affected by hold ups caused by the pandemic. However, many hospitals were unable to cope with the increasing number of cancer patients long before Covid arrived. Johnson now has a ready made excuse for delays. I think we should be concerned about 'leaked' reports suggesting that David Cameron's NHS reforms will be reversed. Apparently, the Prime Minister wants to more in charge of how our NHS is run!!!
The thread has become very quiet again. I agree with you, many women now have a wide range of choices when it comes to accessing information about breast cancer.
We were supposed to to have snow here today, instead we have a cold, blustery day with very fine, drizzly snow that doesn't cover the ground. This will freeze tonight and make the roads very dangerous for those needing to go out tomorrow.
That's all for now. Keep safe and well.
Love,
Gill xxx
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We have had 5 inches of snow and according to the Met office another 24 hours of snow predicted.
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Hello Peter,
Thank you for posting those lovely photographs of the snowfall.
Here in Exmouth we have no snow but it is very cold and the wind sounds very threatening.
I hope it does not snow here as there will be panic.
Sending best wishes to you both.
Sylvia
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Hi Sylvia, Gill, Mary and everyone else,
Thanks for all your warm thoughts and positive vibes for my recovery from open heart surgery. There is life after heart surgery although I am realizing that (just like cancer) it is a different kind of life - yet another thing to worry about and lots of reading to do to keep up with the use of technology in medicine.
I am now just over 7 weeks post surgery and I am doing very well - I do 2 decent walks outside every day and am slowly getting my steps closer to where they were pre-op - I must be getting better because I need to remind myself often that I need to take things easy LOL . The hardest thing for me is picking things off the floor and reaching for something - both things which I am not supposed to do anyway - but sometimes it is necessary especially when there is nobody else around. My incision has healed well - but the bone will take another month. I do not need any pain meds at all now. My appetite is good and I sleep quite well.
I have to take 2 drugs for a period of 3 months post surgery - one is a beta blocker which is supposed to slow the heart down - but mine is at 84 beats per minute which is actually a little bit higher than my pre surgery normal - so not sure what is going on there - I will mention it to my doctor when I talk to her this week. The other drug is warfarin which is to help prevent stroke and clots from developing on the new valves. It has taken my body a long time to get into the therapeutic range - but it is finally there. After my 3 months on warfarin, I will switch to a daily aspirin.
Taking pharmaceuticals is not my thing, but I am willing to do this to ensure the best possible outcome of my heart surgery - I will certainly re-evaluate once the 3 months is up.
Things are tough in Canada in terms of our health care - it is not what it used to be at all. I have had absolutely no follow up from the surgeon - my only point of contact is my GP and that is done over the phone. I have left messages at the surgeon's office which have not been acknowledged. Of course the secretary is working from home (due to coVid) so we are encouraged to go to emergency if we need help - but I would personally try to avoid that except in an absolute emergency. Very odd times indeed.
Our co-vid vaccination roll out is crazy slow - unfortunate for those who want the vaccine.
Weather in Vancouver has been quite wet - but my daffoldil, crocus and clematis are all starting to appear - so perhaps an early Spring - it will be very welcome. However - this morning the temperature is only 1 degree and frosty - so winter is still here.
Keep safe everyone and stay warm.
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Hello all -
I have been checking in to the thread every so often. Not sure if I have anything of importance to contribute, but want to emphasize how grateful I am for each of you and the support given to the members that share their stories. So much thanks go to Slyvia for heading this discussion thread and being the light in the storm for us who share this experience. I have been somewhat busy the last 6 weeks, received my first and second covid vaccines. No side effects at all from the first one... the second was a little rougher. I ached and felt pretty fatigued the day after the vaccine, but took tylenol and ibuprofen for the achiness. It really only last for maybe 12 hours. By the next day I felt fine. We got our vaccines done on a Friday so we could lay low if we indeed did not feel well. My husband experienced no side effects at all. I do wonder about blood type. He is an O and I am an A and he always seems to fair well. I know there was some talk about type A blood was more susceptible to a more serious infection of covid, so who knows.
I also had my 6 month check up with my NP oncologist a couple of weeks ago. I am still in a clinical trial although I am not in the arm of the trial that received the drug, I'm just in the observation arm. They do blood work every time I go in and everything was fine except my sugar level was quite elevated. It was right after lunch and it was 195 they weren't concerned because I had just eaten lunch. At any rate it concerned me and I may talk to my primary care physican. The older I have gotten my blood sugar just keeps inching up but usually is under 100.
I still have pain from my surgery. I had when they did the lumpectomy, I met with my breast surgeon and she said that I may always have that pain and the pain could also be a result from the radiation that I had. I never think of the damage that radiation does. I never had any problems with radiation as far as topical burning or my skin burning. But she said that doesn't mean there isn't scarring that occured from the radiation on internal tissue.
My NP is always so positive and is wanting me to see the positive side of where I am, but I have to tell you I still have a hard time with the what if's and the what is this ache I have now. In August I will be 4 years out from diagnosis. Speaking of being 4 years out, maybe this has been talked about but my hair is so completely different from what it use to be. It now is like baby hair, it hardly grows, it is very thin. Not that hair is so completely important and I am in my sixties... I just wondered if anyone else has dealt with hair that has grown back in being so very thin and fine. I have sometimes wondered too that when my hair did start growing back in I was taking an oral chemotherapy Xeloda and if that had something to do with the way my hair came back.
On a sad note and frustating note, in the circle of my daughter's friends, one has been diagnosed with breast cancer. She is 30 years old. She is not a close friend but one that they all know. She found the lump and went to see here physician and he told her she was too young for breast cancer. That it was probably a cyst and he didn't see any reason to do a mammogram. I'm not sure how much time has passed before they finally did a mammogram. From first being diagnosed with stage II, further scans have revealed lesions in her brain and in her spine and bones and now she is a stage IV. I have referred her to this website and just encouraged her to get the best medical care she can find. Treatment at this point seems to be very delayed and I'm not sure why they have decided to leave the cancer in her breast and just treat the spots in her brain. She is hormone positive. It just leaves me with some many questions. They have not been very positive with her on her prognosis. I really thought there was alot out there for hormone positive metasatic breast cancer. I hope she can find some good information for herself on this website.
I'm wishing everyone well!
Love
Paula
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Hi adagio,
You sound very positive and happy despite only being seven weeks post surgery. I'm so pleased that you made that leap of faith and decided to go for it, despite the dangers involved. Another new normal to add to your previous new normal, I'm sure you'll come to terms with it as you always seem so positive about life - and being a granny will keep you on your toes. Two walks a day is impressive and your steps will undoubtedly improve, just hope the weather doesn't hold you back.
I know that you were concerned about your wound healing properly after radiotherapy and must be greatly relieved on that score - just the bone to go. Try to resist stretching, picking things up off the floor and generally overdoing it!
I'm surprised that there's been no follow-up from your surgeon, but nothing is normal in our hospitals any more. It sounds as though your health service has suffered similar neglect and financial cutbacks as ours. Being told to go to the accident and emergency department if you feel that something isn't right seems bizarre after such serious surgery. I'd be very reluctant to go anywhere near A&E during a pandemic.
Spring is on its way here too, the snowdrops and catkins are out and green shoots are appearing everywhere. something to look forward to again.
Keep enjoying your walks and stay safe and well.
Love,
Gill xxx
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Hello Paula,
I don't think any of us has had much to add to the thread in regard to triple negative breast cancer. Information in the press seems to have ground to a halt since Covid arrived. It's just good to hear from people and hear their news. I alway find your posts interesting.
It's very sad that your daughter's friend has been given such bad news about her cancer. Thirty is so young. Her doctor has behaved appallingly. When a patient presents with a lump in the breast, assume the worst until proven otherwise. She did the right thing and was completely failed by her doctor. Why on earth wasn't she sent to a breast clinic for an ultrasound scan and needle biopsy? Thirty is certainly not too young for breast cancer. It's frustrating to hear that this sort of deliberate neglect is still happening, despite breast cancer being so common. A second opinion at another hospital might be a good idea. After that I would hope that she's directed towards a more knowledgeable, caring and proactive medical team.
I didn't have radiotherapy, but have always had pains that come and go under my arm and around the area of my mastectomy. Like you, I always wonder if it's something sinister. I don't think the 'what ifs' ever really go. You also mention your hair. I always had very thick hair, it was by far my best feature and I was told it would grow back after chemotherapy. It did come back, much thinner and coarser. It's thin at the sides and I have a significant widow's peak. It wasn't until after chemotherapy that I realised that Docetaxel can cause alopecia. There was a court case in America about just this issue and our oncologists should be telling us about this possible side effect before we commit to Docetaxel infusions.
Keep posting Paula, we're always pleased to hear from you.
Stay safe and well,
Love,
Gill xxx
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Hello adagio,
Thank you for taking the time to post to let us all know how you are getting on.
It is good to know that you are doing well just over seven weeks after your surgery. I am sure you will continue to make good progress. You are definitely doing the right thing in getting back to decent walks every day. Getting mobile again is very important. As you say, it is also important to remind yourself to take things easy.
It is good to know that your incision has healed well. I am sure that the bone will heal, but as you say, it takes time. From this point of view, you and Raymond are in the same position. Raymond's bone has healed very well, but it is getting near to the anniversary of his surgery which will be on February 14th. It is a date neither of us will ever forget. It is the long scar on his right leg that has taken the longest to heal and has given him the most bother. January and February will never be quite the same for us.
Keep up the good work with plenty of healthy eating and sound sleep.
You seem to be on the same drugs as Raymond is taking. He had loads when he came home but stopped taking most of them months ago and is now just taking a beta blocker (Bisoprolol) 1.25 mg, and a low dose soluble aspirin once a day. He was prescribed an anti platelet (Clopidogrel) for a year but did not like the side effects so stopped taking it after a few months. Officially he should have stopped it this coming February 15th.
Like you, Raymond and I are not into taking pharmaceuticals. They all have side effects. We feel the NHS is too much into one size fits all. The beta blocker is for lowering blood pressure on the whole and it causes Raymond's blood pressure to go very low, so he takes it at bedtime now instead of in the morning.
Our NHS is really struggling and I think it will be very difficult for it to pick up. There is too much demand on it and too many people using it. It was meant for a much simpler and smaller population. There was none of today's high tech medicine. Now we have appointments by phone or video. We believe there is nothing to match a face to face consultation.
It looks as though your post operative follow up is proceeding the same way that Raymond's did. He had just a post operative discharge letter from the Hammersmith Hospital in London and was allocated a cardiologist consultant at the RD&E in Exeter, but has never seen him. He has just had a couple of letters asking if all is fine? His point of contact is the GP but there are no appointments, just five minutes on the phone. We are really just looking after ourselves! We are also told to go to A&E, phone 999 for a life threatening situation or 111 for advice. The essential personal touch has vanished. I agree these are very odd times indeed and could get even more odd. When you phone anywhere all you get is menus and queues!
It is very cold and damp in Exmouth and the wind is bone-chilling, but at least we do not have snow. There are signs of Spring but I think it will be a late Spring.
That is about all for now. Take great care and keep looking forward.
Love and best wishes.
Sylvia xxxx
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Hello Paula,
Thank you for your post and for popping in to talk to us all. Thank you for your very kind words.
I was interested to know that you have received your first and second Covid vaccines and that you got through them pretty well.
I was very interested in what you said about how your husband experienced no side effects at all and your comment about his blood group O and your blood group A. Very recently I was reading about this in a French magazine entitled Santé (Health). It said that people with group A suffered more with Covid-19 when they developed it than did those with group O. I am group A and Raymond is group O. Of course group O is the most common blood group. I do not know whether there is any truth in any of this.
I was interested in reading about the clinical trial you are in. I would think your blood sugar level would go up straight after lunch. I was also reading recently that people can get confused about their blood sugar levels because they can be measured in two different ways. When I see your figure of 195 and the other one of 100, all I can say is that it is not measured like that here. My information is, looking at a chart, that the way yours has been calculated is mg/dL and it says the normal when fasting is between 72 and 99 mg/dL. It looks as though yours went up because you had just eaten.
I have often said that patients forget how damaging radiotherapy can be. If a patient has gone through long months of chemotherapy and then surgery, the radiotherapy part at the end seems easy. The actual treatment does not take long and when happening is very, very quick and painless. My oncologist told me that radiotherapy can damage the heart and the lungs, causing inflammation if I remember correctly. I had three weeks of radiotherapy with boosters and I was lucky not to have any visible problems or discomfort. Just as with chemotherapy, you may have damage to heart and lungs that are not causing problems at the time. Scarring is a case in point.
It is important to keep looking forward and to look on the bright side. You are nearing four years since diagnosis and you have to celebrate that.
As for hair growth after chemotherapy, I think it is all very individual and personal. We all react differently to our treatment but we all know that chemotherapy will make us lose our hair. We obviously have to treat it kindly.
I was so sorry to read about the young woman and not getting the prompt treatment that she needed. It is important not to take notice of a physician who tells you that your lump is not cancerous and that you are too young to have breast cancer. Breast cancer occurs in women much younger than thirty and is becoming more common. You get yourself to an expert and you ask for a mammogram, an ultrasound and whatever else is needed. It is awful that she has now gone from stage II to stage IV which is metastatic breast cancer. I do hope she will get prompt treatment and get rid of the spots in her brain. I would think they would do radiotherapy on the brain. They did that for a friend of mine who had had triple positive breast cancer that had been treated, and then came back after a year or so and spread to the brain and elsewhere. I am afraid she did not make it. I have another friend who had hormonal breast cancer (not triple) and it came back after about thirteen years and she has been surviving for years since then.
That is about all for today.
Keep well, keep safe, keep looking forward and try not to worry.
Love.
Sylvia xxxx
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Hello Sylvia, Gill, Adagio, Paula and anyone else here,
I still wonder about that last cryptic message from Marias, it was so very strange, as if she was interrupted in mid-thought.
Adagio, I am so glad you are feeling better and moving around. I guess if you must have such a surgery, winter is a good time to get it over with. It sounds as if your doctor visits are quite impersonal, it all makes it even more important to take good care of yourself. More positive vibes heading your way, hope your daffodils continue flourishing!
Sylvia, I am glad to see you got your vaccine, AstraZeneca. I got my first dose of Pfizer vax on Monday of this week, with my second dose to follow March 1. I had a very sore shoulder/arm Monday night, but it was better Tuesday. I do have some tiredness that seems to be extra. I am adding that I also had a bout of nausea and chills. We are also in the iron grip of a Polar Vortex, it just gets colder every day and it's been snowing all week off and on. Right now at 9 AM it is 13 degrees F, which translates to -10C, I think. My puppy even seems depressed, he can't dig holes or chase squirrels right now (they are hiding in their holes). I have been using your method of posting, by going to Word and then moving it over. It has saved me some aggravation. I am adding that it is now a day later and the temp is 11 degrees, brrr.
Gill, thanks for asking about my cataract surgery results. I had the surgery done on a Monday, a very efficient process, we were all like objects on an assembly line. 2 hours later I was being wheeled out to the vehicle. They did have me take, first a sleeping pill for relaxation, and then an IV drug to keep me very relaxed but not asleep. Afterwards I was at home trying to keep up with 2 different eyedrops 4x a day. These drops were an antibiotic drop and a steroid drop. A surprise to me was that, while I know I am sensitive to oral Prednisone, I had no idea that a Prednisone eyedrop 4x a day would have the same result and make me nauseous and very tired for the week I did 4x. The next week I dropped to 2x a day, and now am on one a day, which is very doable. My results are not amazing, but it was explained to me before surgery that since I have already had Lasix on my eyes, the cataract removal results would not be as predictably perfect. Things are brighter, but the vision itself has not changed a lot, and maybe that is how it is supposed to be. At least it is not worse, thank God. Which all makes me wonder about doing the other eye, since the other eye was worked on twice before. We'll see. I see the opthamologist on the 23rd for his verdict, and then have my second vaccine dose on March 1st.
Paula, I am very sorry about the young friend of your daughter who has been diagnosed with Stage IV BC. It does seem ridiculous that all this slipped by and left her in this state. If one looks over this thread and others here it is very soon obvious that many of the women are young. I do hope for the best for her. As to Blood Type, I am also A+, my husband was O, and no vaccine or medicine ever bothered him, while I am sensitive to many of them. I also have mastectomy pain, but my pain is usually referred by my shoulder, which I suppose is never going to return to normal after 2 surgeries. Stay warm, it is probably even a little colder where you are than here, since you are northwest of me.
Love to all, Mary
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Hello Mary,
I am always so glad when I see a post from you on the thread.
Raymond and I will not be given our second dose of vaccine until April 28th. In this country we can never do anything properly and so we are all getting the second dose twelve weeks later, instead of three week later. I wish we could lose some of our arrogance.
We do not have any snow here in Exmouth but it is really cold for this part of the country and the wind is dreadful. I do remember the cold winters in Canada and I certainly do not miss them. I think we are all getting pretty fed up here with spending so much time indoors.
I do agree with you about Marias and the way her post suddenly ended has continued to worry me. It was almost as if she was stopped in whatever she was going to write next. Did she suddenly collapse or did someone suddenly stop her from whatever she was about to write? I am convinced something happened to her, otherwise I am sure she would have posted to us. What do you think? I have the same bad vibes about Hanieh and wonder if something happened to her as well. It is so out of character with both of them.
I do hope your cataract surgery will help with your vision. Let us hope it has all been worthwhile.
I was so glad to know that all was going well with adagio. It will be a year on February 14th since Raymond had his surgery. He seems fine and just a bit of a problem with his foot. We shall both be glad to be able to get out for regular walks and are longing for mild weather.
Keep well and keep in touch.
Love and best wishes.
Sylvia xxxx
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Hello,
Thank you so much for posting this! I was diagnosed on Christmas Eve 2021. After further testing I learned the Cancer has spread to my bones. I am currently waiting on biopsy results to start my immunotherapy.
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Hello Elzie1,
I just wanted to say that I was sorry to read that you have recently been diagnosed with breast cancer on Christmas Eve (I think you mean to say 2020) and you have our best wishes from the group here.
I was sorry to read that further testing has shown that the cancer has spread to your bones. I do hope you will get your biopsy results soon and that you will be able to start your immunotherapy treatment.
Keep looking forward and telling yourself that you will be fine.
Your diagnosis is very recent and we all need time to take that news in and deal with it. You are welcome to stay with us and it would be useful if, when you can, you put your details on your profile.
Let us know how we can help and ask any questions that you like.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
I think you may have missed my last post on February 7th in the recent flurry of activity on the thread.
I had my sixty-sixth birthday last Saturday, my first lockdown birthday. We usually celebrate with an evening out at a restaurant or afternoon tea somewhere. This time we ordered a birthday dinner and this was delivered to our door. I shall now receive my long awaited state pension.
I'm sure you've read about the planned complete reorganisation of our NHS by Matthew Hancock. I'm afraid that this is the end of our 'free at the point of use' medical care. The Tories will simply hand out private contracts to their friends. Clearly Johnson or whoever pulls his strings thought that springing this on the public during a pandemic was a good idea. Were it not for Covid, many of us would have protested on the streets or marched on Parliament, instead, most will be taking lockdown seriously and staying at home. We shall see what Starmer makes of this at PMQ's on Wednesday.
I have everything crossed for the vaccines working to drive down Covid hospital admissions. There are far too many people waiting for essential surgeries and as we know, cancer just won't wait. In Norfolk the over sixty-fives are now being called for their vaccinations. Michael has an appointment for his jab next Thursday.
It's snowing again here and very cold at -2. The roads are too dangerous to risk driving on and it's too cold and slippery for walking. I think I'll just stay by the log burner. Hope it's a little warmer in Exmouth.
Best wishes to Raymond. Keep safe.
Love,
Gill xxx
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Dear Elzie1,
Welcome to the thread, we're all here to support one another, particularly those who are newly diagnosed. Waiting for test results is particularly stressful. I hope you'll let us know when you have the outcome of your biopsy.
I takes time to come to terms with a cancer diagnosis, but once you have a treatment plan in place you'll probably begin to feel more positive and see a way forward.
With my very best wishes,
Gill X
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Hello Gill,
I am very sorry that I seem to have missed answering your post of February 7th. Everything has been pretty hectic here.
I did read with interest what you had to say about vaccination. I think that, above everything else, the government wants to keep people out of hospital, so that they think they are off the hook for all the neglect of the NHS since Cameron took over with the Lib Dems in 2010. They will blame everything onto Covid. I think we shall be having vaccinations against the coronavirus for some time to come. We now have a Bristol variant which comes from the Kent variant and the Kent variant has gone worldwide.
It is true that cancer patients have been very badly affected during the pandemic, but, as you say, cancer treatment was in dire straits before it.
I dread to think what Boris will get up to with these reforms of the NHS.
Here in Exmouth we are in to the third day of really strong winds and somehow they make you feel on edge and make for very disturbed sleep.
I am just so glad we have had no snow.
Take care.
Love and best wishes.
Sylvia xxxx
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Hello Gill, again,
Thank you for your latest post.
Congratulations on your sixty-sixth birthday last Saturday. I was glad to know you made it special by having a birthday dinner delivered. Congratulations on reaching the age that brings you your State Pension!!
like you, I am very concerned about the planned complete reorganisation of our NHS by Matthew Hancock. I do fear the worst. I think that this is deliberately being done during the pandemic, as you say. We have already had all that upheaval with the Lansley report. The NHS is not safe in Tory hands.
I also think that the NHS has become far too big and disconnected. I have found it a nightmare dealing with my cousin during his stay in hospital, during the discharge process, then the settling back home process and now the actual process of providing on-going care. It has been a full-time job for me dealing with all the medical side from 250 miles away and my youngest brother dealing with the rest from 40 miles away. My cousin has delirium/confusion from his terrible infections, long mindless stay in hospital and trying now to settle at home and get into a routine. I have documented everything since November 12th when all this started to happen.
As you say, we shall see what happens with Keir Starmer next Wednesday at PMQs!!
Raymond and I are still dealing with our apartment complex and trying to keep things as normal as possible. We are also trying to deal with our own affairs.
It is cold here and is going below freezing at night. It takes great motivation to get going in the morning.
I was glad to see the group coming together again and to know that Mary, adagio and Paula are participating. I do wish we could solve the mystery of Marias and Hanieh.
That is all for now.
Keep well, keep safe and keep warm. Have a good weekend.
Love.
Sylvia xxxx
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welcome Elsie and hello everyone,
Glad to hear some of you have progressed to having the COVID vaccine! We are a ways off that starting in Australia but now have the highly infectious strain in Victoria. Only a few cases but the state premier has immediately locked the whole state down for 5 days. People are only allowed out for 4 essential reasons. No work no school no visiting. It’s quite bizarre considering we live four kilometres from the border and we have no restrictions. Not complaining at all.
I have another UTI (can’t believe how quickly it comes on) and feel like I might be getting indigestion. My GI tract has been quite good for a while up until now. I wonder if it is the H&P finally impacting my system. Anyway see how I go over the next week. Have booked to see my GP (who is in Victoria) but actually have treatment the Thursday prior to my appointment. Will mention to the nurse and have nexium to take. Will continue to treat the UTI at home and watch my temperature. Don’t see my MO till late April with another round of scans (CT & heart) scheduled at that time.
It is good to be back at work and the end of our summer has been quite mild thankfully. I see some of you have really cold temperatures with snow (lovely pics). I hope this post finds you all well and for those of you undergoing treatment doing the best you can.
Best regards xx
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Hello Helenlouise,
It was good to hear from you.
With reference to the vaccinations, I do feel that in the UK we have rushed it all somewhat. We have a show-off Prime Minister who does not give enough thought to anything, in fact he gives no thought at all. He loves to parade himself in a high-viz jacket and a hard hat. I have doubts about the Astra Zeneca (Oxford) vaccine because there are too many rumours about it. We have rushed it out to be King of the Castle and because it is cheap. Raymond and I had it a week ago and we had no choice of vaccine because we had it done at a local pharmacy. We cannot get the second dose until April 28th. People are being brainwashed into thinking that it stops spread and and stops you catching it, when in fact it just stops you getting it badly so that you need hospitalisation. It is all about the government saving face with the NHS.
I think the thoughtful way that Australia tackles things is much better.
I was sorry to read that you have another UTI infection and that you feel you might be getting indigestion. Do you take any probiotics to keep your gut healthy? It could well be that the trastuzumab (Herceptin) and the pertuzumab (Perjeta) is upsetting you. You have been on them a long time and you had no rest with them and chemotherapy. Your body is going through a lot. I do hope you will be feeling better soon.
I do hope you will have a meaningful appointment with your GP and that your treatment on the Thursday prior to your appointment will go well. How long did you have paclitaxel for?
I was having another look at your details and I was wondering what HER2- (DUAL) and later HER+ (DUAL) means.
You are very courageous and I do wish you all the very best.
Have you tried any cranberries for your UTI? I buy fresh cranberries when iin season, but since this is very short I buy frozen cranberries the rest of the year. I buy the ones that are whole and have been frozen raw and are unsweetened, not the dried or cooked ones because they are sweetened.
It is good that you are glad to be back at work.
Here in the UK, where it is unusually cold, we are all longing for some warmth and some sunshine. I think we are all fed up with lock-down and I think it is because the government keeps messing around with it. There are always too many exceptions!
That is all for now.
Love and best wishes.
Sylvia xxxx
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Hi Sylvia,
The HER2 dual mean they have tested for Her twice. Once IHC and once FISH. They measure different things but both the check HER2 levels. As you know I was originally TNBC and then borderline HER2 with the results last February positive HER2. Changed my world by changing my treatment options and brought me to where I am now. I must say I was shocked when the taxol healed the Mets I had on skin and in chest. I was on the taxol for four of six proposed rounds. After four MO scanned and all clear so dropped the taxol. Which was great because my neutrophils were not bouncing back from the chemo. Now treatment plods along with nothing dramatic just the odd side effect.
I have used cranberry juice for UTI in the past and must get some more to take now. Thanks for the reminder. I haven’t seen fresh or even frozen locally. Tonight I am feeling better so fingers crossed it passes.
Thank you for your thoughts and wishes xx
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hi everyone
I’ve been try to catch up with the thread and read everyone’s posts and I hope u are all doing well. I’ve just been on the road again to Dubbo Orange and Bathurst training staff to do skin testing for Tb and it’s been a welcome change from Covid. Heading to Adelaide again on the weekend for my grandsons 7 th birthday and really looking forward to that
Uni starts again next week and I’m eager to get into my last unit. The lull has made me think about that dark place again which I hate ! Feeling all the lumps and bumps I have and googling worst case scenario. Felt a slight lump in my rotator cuff area last week in the shoulder I dislocated and tore the rotator which is probably a fatty lipoma (have lots) and have been imagining all the worst things. So I’ve decided I’m going to leave my shoulder alone and start getting busy again. My mind is my worst enemy I think!
It’s getting cooler here and I would imagine a quick transition to autumn very soon. The Covid vaccination program is due to commence here in March so I think I’m going to be really busy soon ha ha . Hope u are all doing really well and I’ll keep u update about Australia’s Covid vaccination program
Much love
Kath
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Hi Mary,
Congratulations on getting through your cataract surgery, though your reaction to Prednisone rather spoilt the relief of having got it over with. I know that cataract operations are commonplace these days, but it doesn't make having someone messing about with your eye any easier to tolerate. Having had lasik twice on the other eye is a dilemma for you. Good luck with your opthalmology appointment.
I had very little reaction to the Pfizer vaccine, I was hoping for my antibodies to put up more of a fight. I have to wait eleven weeks for the next dose, you'll have had your second dose long before me. From what I've been told, the second shot is the one that often causes a strong reaction. I shall look forward to it!
Having a depressed puppy can't be much fun, especially when chasing squirrels and digging holes are such important features of his outdoor life. Cathy and Ida (cats) are annoyed by the snow, but are amusing themselves by destroying the sitting room.
I'd very much like to know what happened to Marias after her last post at the end of October. She was very ill and I suspect that she may have died. I wish that there was another explanation. I'm thankful to have had the opportunity to know her.
Hope the weather soon improves in your neck of the woods.
Stay safe and well Mary.
Love,
Gill xxx
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Hello Kath,
Thank you for your latest post. You sound very busy. Is tuberculosis common where you are? I ask this because it had virtually vanished here compared to what it was like when I was a child, but in recent years it has come back and is apparently more virulent.
I do hope you have an enjoyable time for your grandson's birthday.
I can feel from your post that you are looking forward to going back to university next week. I do hope this will help you to steer clear of dark thoughts. We all know that worrying is not good for us. If we think we have a problem we should get it checked straight-away.
Let us know all about how the vaccination programme goes in Australia.
That is about all for now.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
Being a voluntary director of the apartment complex must be a nightmare during the very cold Winter months when the temperature drops below freezing. I hope you and Raymond haven't had to deal with frozen pipes. It's been freezing here for days, but has warmed up today. Wet and misty though and there may be fog later. Weather aside, our morning was off to a bad start as one of Michael's fillings dropped out while he was having his daily dose of nuts with breakfast. He has a dental appointment tomorrow, the first of the day. Very impressed by the efficiency of the NHS dental surgery. My dentist is private and more local and probably couldn't have offered an appointment any earlier.
I agree that Hanieh's disappearance from the thread is a mystery. I wonder about Jags too. You'll have seen my post to Mary regarding Marias. If my memory serves me rightly (and it doesn't always), I think Marias told us some months ago that her doctor had said she had only about six months left to live. I wish we could know, her story is incomplete and of course hope gets in the way of our concluding that our friend has died. Marias was always generous with the time she spent helping students at her University, she struggled with her English, but always kept us informed about the progress of her illness, the dire state of Colombian healthcare and the appalling state of her country, she worried about the increasing poverty in Colombia, she was also brave and accepted her position with dignity. We'll all miss her, but we're also better people for having known Marias. The best we can do is to remember her.
Mr Johnson is now crowing about the success of his world beating vaccine roll out. Naturally he ignores the 117 thousand world beating Covid deaths caused by his refusal to listen to his scientific advisors and impose a FULL lockdown at least a week earlier. Airports have remained open throughout and the quarantine hotels are in chaos because no one in Government had thought to let hotel managers know what the plans were. Johnson doesn't want to acknowledge the number of deaths caused by delays in treating serious health conditions while the hospitals starved of cash were striving to cope with Covid patients. No apology for the huge number of deaths among hospital and care home staff resulting from the the lack of PPE. Now we have the reorganisation of our NHS by the seriously inadequate Matt Hancock who stands accused of handing out contracts to his friends in the private sector. Starmer needs to be much tougher and the Labour party needs to stop bickering amongst themselves, otherwise we shall lose our free at source health service forever.
On a lighter note, I decided to learn how to crotchet during this Winter lockdown and I'm surprised by just how much I'm enjoying it. No idea why I didn't learn before now. If anyone wants to try, 'Crochet for absolute beginners' by Bella Coco on YouTube is excellent.
Hope Elzie1 gets in touch soon.
Keep safe, well and warm.
Love,
Gill xxx
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Hello Gill,
I hope Michael got his filling sorted out.
I do not suppose we shall ever find out what happened to Marias and Hanieh. They were two fine women and I had deep feelings for them. I read a post by Hanieh, some years ago now, felt she seemed lost on the forum and invited her to join us. I do miss her. It is the same for Marias. Neither of them were afraid to speak their mind.
As for Boris Johnson, I am sick and tired of him and his inept government.
I buy a French magazine entitled Courrier International which publishes articles from some of the best papers, magazines and websites etc. from around the world. There was one in the latest edition which I thought summed up things very well. It said the Tory government had been inept from start to finish with the pandemic. As for Boris Johnson, it said he had accomplished his mission of getting Brexit done and it is now time for him to go and take his band with him as well as the incompetent bureaucrats that he directs.
These articles are all in French in the magazine but have been translated from different languages. The article comes from a website called Unherd. I like the title, in English, it is "Is there a pilot in the plane?"
Like you, I am now wondering what has happened to Jags56.
There is such trouble around the world that you sometimes think you are better off not taking in any news!
On the thread these days we seem to have a lot of people viewing, new posters appear, tell their story, ask some questions, and then disappear. What has happened for example to cocolala after her long surgery? What has happened to Elzie?
It is another dreary day here and the week already seems long.
Take care.
Love and best wishes.
Sylvia xxxx
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