Calling all triple negative breast cancer patients in the UK
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Hi Mary,
Sorry about the weather over there. In Norfolk it's wet and very windy. No ice and warmer than our average February weather. Spring is not on the way just yet then.
Skating in boots sound a whole lot safer than ice skates. A friend and her father once took me to a large ice rink in Nottingham quite close to my home city of Leicester - in the East Midlands. I spent most of the time clinging onto the barrier at the side of the rink just trying to keep upright. When I did venture onto the rink, I managed to skate a couple of metres before gracefully falling over. Couldn't manage to stand up by myself, fortunately someone skated up to me and helped me back onto my feet. I didn't repeat the experience.
The hospital didn't mention the costs to me I was simply refused further treatment by the Surgeon A Surgeon is not an oncologist and everyone should see an oncologist before decisions are made. Standard treatment for TNBC is surgery followed by chemotherapy. Under English law, hospitals built by PFI have an absolute duty to pay off the PFI loan before paying for anything else and this has meant cutbacks and it shows. Perhaps not as shocking as Flora's mum being told halfway through her treatment that the hospital had run out of money and if she wanted treatment, she would have to pay for it herself. I think that's immoral and probably illegal. It's very clear that the Government wants to break the NHS and push for privatisation. Many services have been handed over to the private sector already. Most have failed spectacularly.Tests held up for months, body parts not disposed of, the list goes on. We have no-one in the UK who is capable of leadership. This Government is probably the worst I've experienced. We have become the laughing stock of Europe.
I did read your post to Flora.TNBC research has really come under the spotlight recently. As you say, it would be ironic if the cure was too expensive to buy. I seem to remember that Herceptin was considered too expensive at first.
I didn't get to see my oncologist today. I'd misunderstood. My pre chemotherapy assessment was done by an oncology Registrar. He was excellent, spent a lot of time with me and answered all my questions. My oncologist wanted me to have the full dose of Paxlitaxel, as did Dr. H at the London Cancer Centre. Metaplastic is so aggressive that it needs to be hit hard. Actually it's a relief to have the decision made for me. I only have one treatment left now so don't really want to cut any corners if I can avoid it.
The Registrar told me that my test came back negative for Norovirus. It's actually a very persistent infection that hasn't responded to the antibiotics. Michael is still not over the same infection. It's definitely on the way out though. Hope the chemotherapy hasn't done anything to put the recovery back.
You shoulder must be extremely painful. Guess you only have one choice left. I'm always amazed at how good anaesthetics are these days. Also the miracle of waking up after surgery without pain. Even small operations used to be so painful. Like you, I don't take surgery lightly and I certainly don't make a good patient. Get it over with soon and then you'll be free to enjoy the warmer weather. You always sound so active and energetic and the pain will start to hold you back. You've been through so much worse after all.
I'll light a candle for you as you did for me.
Take care of yourself.
Love,
Gill X
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Hello Mary, Gill, Susie, Flora, viewfinder, Helenlouise, Jags 56, Hanieh,
Thank you all for your kind words and for keeping the thread ticking over.
Flora, I do hope you and your family are feeling better. It is now two weeks that this awful bug started with Raymond and me and we are still very much below par and have a hacking cough.
This is so very much not Raymond and me. We have been doing a lot of lying down and sleeping. Raymond did manage to see the GP and was told that he had a viral infection. I felt too unwell to go to the GPs surgery. The GP gave Raymond two bottles of strong linctus for bot of us.
Another doctor at the surgery did a phone appointment and insisted that what we have is a bacterial infection and that we needed antibiotics. Our own doctor said the opposite! She did take a swab from Raymond and it came back viral infection.
We have been told that it could take weeks to clear.
Sending best wishes to all of you.
Love.
Sylvia xxxx
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Hi, Sylvia
Glad to see you well enough to feel like posting. How awful to have such a bad bug. I do know how you feel, last February I was out almost the whole month with flu, once the worst of symptoms passed I was left very weak and tired. Raymond deserves kudos for rousing himself enough to get out, and find some information for you both. I do not know what "strong linctus" is, but I hope it helps.
Here it seems some of us have been not faring too well health-wise, with Norovius for Gill, sinus infections/problems for Flora and I, and so on. The Australian contingent is coping with dust storms and high heat and drought. I went back to the doctor Friday and had an injection he gives, which contains some steroid and a mystery ingredient, it gives a feeling of energy and does dry up the head somewhat, which cuts down on sinus drainage. I remember that last February I did the same and got through that month with his help.
This morning here we wake up with a thick glaze of ice over everything. I went out to feed the birds but first had to throw down some ice-melt product on the bit of concrete I have to walk on to get there. Absolutely glassy out there! Not a car moving on the road.
I suppose it's a good day to catch up on things here, and I am so glad to hear from you!
It's definitely not the same here without you. I do wish that Jags would post back and tell us a little about India, and the state of healthcare there, and what is the weather like?
I will talk to you later, Sylvia. Take care and keep resting, spring can't be far away!
Love, Mary
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Evening all,
Sorry, just been watching Endeavour.
Six months today since my last chemo cycle and the hair still has a long way to go. Nails completely back to normal, though.
Hope everyone gets over their dreaded lurgis soon.
Susie
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Silvia, I pray your husband and you continue to heal. This cold and hacking cough that's going around is nasty. As I mentioned, mine lasted two months. Hope yours doesn't. Continue to lay down and sleep. Both of you need as much rest as you can get!
Mary, there are several words that they use in this thread like linctus. I didn't know what it was, so I
1- highlighted the word right in the post
2- right-clicked the word while highlighted, then
3- selected "Search for linctus" from the drop down menu.
It opens a new window with information about the word. I use the Chrome Browser but the feature is probably available in other browsers. Give it a try as it's very handy way to search when reading something on the web.
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hi everyone
Hope u are all well? Getting cooler here. But concerned about a long standing under active thyroid I have. Been on thyroxine for many years and had my bloods done for the first time in a couple of years which were mildly elevated. Have always had a tickling cough on and off for years because of it but seems to be a bit worse on one side! Has taken me to a very dark place!!!! I know I’ve been taking thyroxine at the same time as magnesium since the elevated level and I’ve read that magnesium can counteract the effect of thyroxine. Dosage increased and magnesium stopped to see if it makes a difference but really scared
Cheers
Kath
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Dear all,
Sylvia, very nice to hear from you but so sorry to hear you're still under the weather .
Do take care of yourself and ring the GP if you feel at all concerned. I can't remember if you've had the flu jab this year, although vaguely remember that one year it made your lymphadaema flare up- so I imagine you're not that keen on it.
None of us had it, which I regret. We all (apart from my husband, Jez) caught flu in rapid succession, starting with the littlest 10 days' ago. All the children have been off school since then but have finally gone back today! Hurray!
So it's been quite a week! I've now got a chest infection and asthma-type symptoms so am on ABs and an inhaler. Still bed-bound too. But am enjoying reading all my old children's books: the Lorna Hill series; Heidi; A Traveller in Time by Allison Uttley. Do any of you remember those? Or did you read them to your children or nephews and nieces? I have been quite transported into alternate universes, which has helped me feel a little less lousy.
Mary, I'm sorry you're still sinus-ey and having pain in your shoulder. And, Kath, sorry you're having your thyroid investigated again.
Illness of whatever kind ( even when we know it's unlikely to be serious and will pass) can take us to a dark place, can't it, Kath? And of course all the more so for you guys who have had something very serious.
For example, I've been terribly worried and tearful about my youngest, Toby, this week because his temperature stayed high for 9 days, and this has never happened before. It has finally come down- phew!
I've also had many panicked moments since my chest infection started. The combination of not being able to breathe well through nose( thanks to sinusitis)or mouth -and the sleeplessness that comes with it-led to a series of small panic attacks, where I felt I was going to pass out, plus three increasingly crazed calls to GPs/111!! It is hard when all the doctors are saying it is not an emergency,one's rational self knows it's not an emergency but it still FEELS like an emergency!
I was quite surprised that the doctors gave me ABs so readily as soon as they heard the crackle in my lungs. I know that chest infections are sometimes viral in origin, and thought doctors at least have to test the sputum these days to see whether ABs are necessary?
I guess that, as with so many medical decisions, it is a fine balancing act- doctors do not want chest infections becoming pneumonia, and if this means a few unnecessary sets of antibiotics along the way, this is probably a price worth paying. Plus it is a crazily busy time of year and they have to make quick decisions.What a job they have .....
Susie, great that you're now 6 months post-chemo. Has the time flown?
The sun is out today, and our territorial robin seems to be making its presence felt just outside my bedroom window. Watching the birds is such helpful thing when “convalescing" I find. Their funny, energetic movements really lift the spirits.
I wish you all uncomplicated recoveries.
Love
Flora x
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Hello, Flora,
Yes, I suppose the time has gone by quickly. 6 months since chemo. 3.5 since radiotherapy finished. All seems a bit like a bad dream now.
I had the flu jab as I do every year, being asthmatic. Sorry you're feeling ill. Looks like the weather's bucking up a bit too. I shall head down to Kew Gardens this afternoon to visit the annual orchid festival. I wonder if the little green lizard who lives in the Princess of Wales conservatory will be out and about greeting visitors.
Susie
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Hello everyone,
I am posting to say that I shall not be posting any more on the thread. I shall read posts for a little while until those in our group have finished treatment but after more than eight years of devoting myself to this I need to take a long break.
I am feeling very under the weather, tired and exhausted and I need some time for myself.
Sending love and best wishes to you all.
Sylvia xxxx
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much love Sylvia. Stay well. Just have to say u are an amazing woman with a very gentle heart. Take it easy and enjoy ur well earned rest. Also did they test u for Pertussis (whooping cough)? We routinely test for it if cough lasted longer than 2 weeks in adults in ur age group as adults don't whoop. The cough is there for up to 3 months. Also community aquired pneumonia or a pneumococcal strain is comfy within ur age group . Have u had a pneumococcal vaccine or cxr? PM me if u want to discuss ? Happy to give any guidance I can
Cheers
Kath
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Dear Sylvia,
I was surprised by your post, and I am worried about you more now. Kath has a good point, you could have something else than you think. Just because Raymond has a viral infection doesn't mean yours is a viral infection, but you know that.
I want you to have all the rest and care you need, dear friend, and I want to run to your house and take care of you.
Thinking of you, and I love you.
Mary
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Dear Sylvia,
On one level, I am very sorry to hear that you will no longer be posting in this thread, the one you started eight years ago. On another and most important level, I agree that it's the right decision. You need to rest and take care of yourself.
Though I haven't participated in this thread for a very long time, I want to thank you for all you've done to help me understand what my sister will be going through. Your love and dedication to helping others showed through every word you wrote. I so appreciate your help, and the help others have given me as well.
I wish your husband and you well! God bless you!
xxx
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Dear Sylvia,
I hope you feel better soon. Spring is just round the corner and I hope you'll be able to enjoy the sea air.
Susie
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Dearest Sylvia, I am saddened by your news but I too understand that you need to move on. You will be sorely missed by so many you have welcomed, befriended and supported with your knowledge and kindness.
I sincerely wish you and Raymond a speedy and full recovery and a happy life.
Thank you very much for making me welcome and the care you have shown me and all that have participated on this thread. You are the essence of a community.
Best wishes and love xxx
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Dear Sylvia
It is shocking to know that you will not be on the thread. I do sincerely hope that this will be for a short while. You are such an inspiration to us all here. Hope that you and your husband get well soon. Best wishes .
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Hi, viewfinder
Thanks for tip on looking things up, I confess I usually just take the easy route and google things; I asked about linctus meaning because I thought maybe there was more to it than I read. It sounded like cough syrup, which I have never found to be very helpful, although I haven't used it in a long time.
I often do not recognize UK brand names of products. I do sometimes listen to a talk radio program from England, I listen on computer. It is called LBC, (Leading Britain's Conversation) and it follows the talk radio format used here, there is a host discussing a subject and people call in and there are many commercials. It is often interesting, and sometimes the accents of the callers very hard to understand for me. They are speaking English, but not English as I hear it on a daily basis. The commercials are entertaining too, many of them have the same melody and music track as ours, but the products have different names. It's fun if you're ever in the mood.
I confess Sylvia's post has me a bit worried, although I do know how much time, effort and research she has put into this thread. She did not take it lightly. I do hope she will feel stronger again soon.
Talk to you later, love
Mary
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Hello Sylvia,
You and Raymond have had a very difficult few weeks to say the least. Your illness is just so persistent and I can see that it's bought you very low. I'm so sorry for that.
After your years of tireless research on our behalf, no-one could deny that you - and Raymond - have earned a good long rest and perhaps, the opportunity to explore pastures new. You live in a beautiful part of the country and the warmer weather will arrive as you are both, hopefully, beginning to feel better.
Sylvia, I was utterly shattered by my diagnosis and you, along with the many friends I've made here were the glue that put me back together. You must have put so many of us back on the right path over the years.
The research that you have undertaken on our behalf has been useful and down to earth, you have also shared your advice for a healthy lifestyle and diet. Thank you for everything.
Sending you my love,
Gill X
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HI, Gill
My skating career on actual skates sounded much like yours, very short-lived. Also we lived very rurally and there was very seldom a chance to go to an actual skating rink. The pond is what we had, and what we used.
The UK Healthcare System seems to make it absolutely imperative that the patient take strong control of the situation from the beginning. It is really the same here, maybe just the degree is a bit less. Being a passive patient is perilous, it is too bad but is the situation we are in. It does seem like your System has nobody in charge, it sounds like you have many very able doctors and nurses, but no good system for them to operate under. I cannot see where things are going, but polititicians talk and talk and things just seem to get more convoluted.
I cannot complain about delays here, depending on what kind of doctor one is seeing. I made a call yesterday to one of the Orthopedic Surgeons my GP had recommended, she will see me next week. However, if I wanted to see a Neurologist, I would wait a month, maybe three months. Surely they make exceptions if one had something like a brain tumor, I would hope. When picking my surgeon, I was trying to choose between an older male doc with a good reputation, and a young female doc who were both recommended. I called the younger one first, thinking perhaps she had the latest technology knowledge. However realizing that the older doc would have more experience. We'll see.
I am not in bad pain if I don't do anything with my right arm. However, I am right-handed, and that doesn't last long. I am not looking forward to this, but am looking forward to feeling able again with my right arm.
Another medical anecdote; I have a young friend who had exhausted all local docs with her problems, and she finally called the Mayo Clinic. She waited 5 months for her appointment, but once there, had every test known to man and a team of experts working on her case. All that being said, her visit was in January and she is finally going to get at least a partial diagnosis in March. Not too speedy, but sounds very thorough. She has been through the mill.
I wonder if Sylvia has the same Norovirus bug you had, it sounds like it's taking forever to exit. When is your last Paclitaxel treatment? So glad you are almost finished.
Be well, thinking of you
Love, Mary
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Hi, Flora
I'm so sorry you have been bed-bound, I hope you are feeling better. I am not sure of your age, here when one turns 65 the pneumonia vaccine is pushed, I have not had mine yet. But my husband had lung problems, and often if he would get a cold it would progress to bronchitis and he would get the dreaded crackling in the lungs and would be put on medications. Nothing to mess around with really. I also hope your little Toby is better, how frightening for him to have a very high temperature for over a week, you must have been worried sick, or sicker! I'm glad your husband was able to shoulder the load of all this nursing.
I hope the robin is truly the harbinger of spring, that's probably the only thing that's truly going to help us all get out of this morass of illnesses. February is a rough month this year, actually as far as I am concerned it's usually the worst month.
Better things are coming soon, I predict. Best wishes to your mother too, I hope she has avoided having all these bugs.
Talk to you soon, love
Mary
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Hi Kath,
I hope you get your thyroxine straightened out and get rid of the nagging cough. We don't need anything else to worry about, I wonder if dropping the magnesium will help. I have noticed if I don't supplement with magnesium I will have more leg cramps than normal, I am often mixing and matching different doses of supplements.
Try not to worry too much, easy to say, hard to do. I was having pain in mastectomy site, went to onco, she said nothing wrong but found my rotator cuff tore completely. She said it is referring pain to breast site along with back and shoulder. So not good, but at least not cancer!
I hope Sylvia perhaps consulted you for help, I do worry about her, this illness is unusual for her.
Talk to you soon, love
Mary
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Hello Mary
As you know I stay in Delhi the capital of India. I had my treatment in a private hospital. There are government hospitals where treatment is free but you have to wait long (months) for your turn. I go for checkup every three months. All well till now. I do suffer from neuropathy in my feet and hands . During my treatment I was not aware of anything related to medication and did whatever the doctors told me. All knowledge I have is through this thread. English is not my language and I take help from my daughter .
Here we are having cold weather. We have hot summers from May to September. I try not to think about my illness and my husband is very supportive and helpful . I have to daughters. My elder daughter is married and has one daughter who is four years old. Younger daughter is studying in college.
I hope to hear from Sylvia soon.
Best wishes
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Dear all,
Firstly, Sylvia, I was so sorry to see your post. Sorry that you sound so run-down and low. And sorry that you won't be guiding us on our board anymore. But , as others have said, this is absolutely understandable, and I hope you feel really proud of yourself that you've kept this running as long as you have and provided so much support to so many.
After a serious diagnosis like cancer(one's own or one's relation's), there is only so much one wants to share with real-life friends. And the friends find it hard to keep up too (through no fault of their own). Internet forums such as these fill a real gap - people can come on and talk as much as they want about their symptoms or feelings and connect with others who may have also experienced some of the same. Often in life, the people one wants to talk to in crisis-ridden times are those who have gone through those same crises. And, Sylvia, you have provided a wonderful, supportive, educational environment in which we can all do exactly that.
Sylvia, would you consider getting in touch with your GP-do you have a helpful one? It sounds as though you could do with a bit of reassurance that this bug isn't going last for ever.
I am lucky to have a very good GP and I don't take that for granted. I am still bed-bound with a chest-infection following flu and am on a second course of antibiotics. It is frustrating indeed, but I do trust it will eventually get better. And no doubt the same can be said of whatever you and Raymond have.
I am entertaining myself by watching The Crown on Netflix-am rather behind the times-the first series was made in 2015. I am finding it quite riveting! What a life the Queen and Prince Philip have led! And how different the world was in the 1950s!
Gill, how are you feeling now? And Mary, thanks for your detailed replies. I'm 42 so am not eligible for free flu or pneumococcal vaccines, but I may well pay for them in the future.
Warm wishes to everyone
love
Flora x
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Dearest Sylvia,
I bought some daffodils recently, and I thought of you. I didn't get a good picture of them, but this will show you that they are back in stores in Southern California. And that can only mean that Spring is around the corner.
I am not reading as frequently, but I happened to see your news. Your health really concerns me. But you have more than earned a break to rest and take care of yourself. I'm so sorry to hear that you and Raymond have been so ill. Please don't trouble to respond to this message, but do let us know when you are feeling better. Whatever it is. It must be quite something to bring your fierce vitality down. You have nurtured this thread for years, and been such a source of light, hope, and comfort. I'm sure that it does get quiet here from time to time, but that's OK too.
I want to share greetings and love to Mary, Hanieh, Marias, and to all of the lovely friends that my chemo-brain cannot recall the names of just now. I am well, and I hope you are all relatively well too, and/or getting by and/or thriving.
Finally, here are some updates from the Fullerton Arboretum, on our Cal State campus. It has been beautiful in the gardens in the past two weeks:
This Week in the Garden
Catalina manzanita, or Arctostaphylos catalinae, is blooming in our Channel Islands Collection. Catalina manzanita has a natural distribution limited to Catalina and Santa Cruz Islands off the coast of California. It is considered to be a rare plant due to this limited distribution. Catalina Manzanita is a large evergreen shrub with beautiful smooth red bark. The seeds have a very thick and hard seed coat that becomes scarified by fire, which increases the germination rate.
Flourensia thurifera is blooming in our Chilean section in the northeast corner of the arboretum. This plant is known as maravilla del campo in its home country of Chile, which means marvel of the field in English. Our plant has a profusion of very bright yellow flowers that can be spotted from far away. Flourensia thurifera is native to the Mediterranean Climate region of Chile and seems to be well-adapted to the growing conditions in Southern California.
Love, Pam
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Hi, Jags
Thanks for reminding me that you live in Delhi. And it sounds like in Delhi you also have a mix of private hospitals or those that are government-run. It sounds like your treatment was successful, except for the side effect of neuropathy. I am bothered by that side effect too. Neuropathy was on the list of side effects that was given to me before treatment by the staff at Clinic, but it was very much down-played and I didn't think I would get it. But the symptoms started after the first infusion of Taxotere. I think it is better than it was, I do get regular acupuncture, and that is one of the things he treats.
How nice that you have a helpful daughter, that's a blessing. And another daughter with a child. It sounds like you have a very nice family. I am glad your husband is so supportive of you.
Looks like we are all waiting for spring, also here where I live we have hot summers. Usually July and August are the worst for heat. January is usually the coldest, and February is the worst for sicknesses, apparently.
Stay well, Jags. I am hoping we hear from Sylvia soon too, to tell us she is better.
Love, Mary
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Hi, Pam
Good to hear from you, I think it's safe to say we are all concerned about Sylvia and hoping she is getting better. It sounds like she and Raymond were both laid low with some malady. You are right, it is just not like her to be so ill, I feel quite helpless and just hope for a quick recovery for her.
I also hope she will see your pretty flower pics, they are very cheerful. I look out my window and see only shades of brown and gray, we have had very few sunny days since November. Today is supposed to be nice, with temps climbing to 50, from 25 this morning. 2 days of that and then the temps are going back into the teens, it has been like this all month. In January I was on the island of St Thomas VI, and St John. They do have leftovers of hurricane damage, but still it was a week of 80 degree sunshine. Very nice! I even came back with a light tan, that didn't last long.
It sounds like you are doing very well, and living life in the sunshine.
Talk to you later, love
Mary
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Hello Kath,
Thank you for your kind words. I have had the pneumonia injection that is supposed to last for life. I do not think that they test for whooping cough here. It all seems very lax.
Raymond had a swab and was told he had a viral infection. That is as far as it goes. He did have a flu injection last autumn.
I have not had a swab but our GP has just assumed Raymond and I have the same thing. She gave us two bottles of pholcodeine sugar free cough linctus/mixture. It does stop the coughing and is very strong with codeine compared to anything you can buy at the pharmacy. It suppresses the cough and allows you to sleep but of course it does not heal the cough.
I am feeling much better today and so is Raymond. It has been a nice spring day and I got myself out for the first time in two weeks to do a bit of food shopping and get some fresh air.
As I said before, I shall make sure I see those in the group through to the end of their treatment, even if I do not post as much.
Love.
Sylvia xxxx
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Hello viewfinder, Mary and Pam,
Thank you all for your kind words and thank you, Pam, for the lovely photographs.
Thank you Mary for your PM and kind words. I shall post more tomorrow.
To Gill, I do hope all is going smoothly with you.
To Jags, it was nice to see you on the thread.
Flora, and mum and family, I hope you are all feeling better.
To Susie, best wishes. Do you have any photographs of the orchids?
I hope I have not forgotten anyone.
Love to all.
Sylvia xxxx
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Hello Sylvia,
This is my favourite orchid arrangement which is from the 2006 festival.
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Hello everyone
Many apologies for not posting this week. The usual temperature spike - I managed 39 this time. Also a UTI. I don't feel that I should complain especially after everything that Sylvia and Raymond have had to endure . Also Flora has been hit very hard too. Not to mention Mary's painful shoulder. What poor old (and young) girls we are.
Appreciated the very colourful photos of flowers. The orchids are stunning.
I'm out of hospital now and I'll be back on the thread once the old body pulls itself together.
Sylvia, I hope you and Raymond continue to improve. Now is your time, enjoy it. Please don't reply to my post.
Much love,
Gill X
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Sylvia, good to see you back, no matter how briefly! Glad you're feeling better today.
SusieW5 and Pam: very lovely photos! Photography has been a life-long passion for me.
I don't have photos of orchids but thought you might be interested in this photo of Flaming Parrots. It was taken three years ago in Tulip Town, Skagit Valley, State of Washington, USA.
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