Calling all triple negative breast cancer patients in the UK
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Oh Sylvia that’s bad news. Thanks for touching base. Wishing Raymond and you all the best. X
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Dear Sylvia,
I'm so sorry to hear about Raymond's heart attack. That's bad enough in itself, but the inadequacies of the NHS are worrying. Your many friends here will be thinking of you and Raymond. I do hope you have some positive news very soon.
With my love and very best wishes,
Gill xxx
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Hola Sylvie, confío Raymond se recupere lo más pronto posible y que tú no te agites tanto con los trámites burocráticos y que les ofrezcan el mejor tratamiento posible.
Estan en mis oraciones todo el tiempo.
Abrazos
Marias
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dear Sylvia
I am so sorry Raymond had a heart attack, and how distressing that the hospital is making things more difficult for you two. My thoughts are with Raymond and you at this very stressful time. Best wishes to you both!
Love, Mary
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Sylvia,
My thoughts and prayers are with you and you family, praying for a speedy recovery.
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Hola Marias
I hope you are well, you have been through some very trying times and I'm glad you are better. For a while I wasn't here so much because it was difficult to use my right arm, but that is also slowly getting better.
Yesterday February 5, was the 5-yr anniversary of my husband's death, and February 3 marked my 6-year anniversary diagnosis of TNBC. Sad days and glad days!
Take care Marias,
Love, Mary
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Dear Sylvia,
So sorry to hear about your husband Raymond - this must be a very stressful time for you. Know that our warm thoughts and prayers are with you during this difficult time. Wishing only the best for you and healing for Raymond. All of us on this thread are thinking about you.
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Hang in there Sylvia! They do awesome things for infarcts now days! The focus is on early reperfusion. Thinking of u both
Much love
Kath
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great newsAdagio! What antibiotics did they prescribe for u? I’m almost finished the antibiotics they gave me for my jaw and it still looks a mess! Often the community Aquired pneumonia’s are viral
Cheers karh
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Hi Mary,
Congratulations on your team's Super Bowl win. As for the rugby, France beat England 24 - 17. If only we'd played the first half with the energy of the second.....
I wonder if one of the long term side effects of chemotherapy is bruising. My arms are fairly clear but my legs are constantly bruised these days. Have you mentioned your bruising to the doctor?
I read your post to Marias and noted that it was the 5th anniversary of your husband's death two days ago. You must have found coping with your own diagnosis and treatment along with your husband's illness extremely hard going. Life is so cruel sometimes. Your being six years out from diagnosis is very good news and encouraging for anyone here who is not long into, or out of, treatment.
I read something yesterday about the possibility of a test to detect cancer long before symptoms appear. Apparently changes in our cells can occur many months or years before we notice anything is wrong. So the search for a reliable test is beginning. Who knows, if all goes well it could mean surgery only in the future, with no need for chemotherapy or radiotherapy.
I've had a headache for over two weeks now, so I'm off for an advanced eye test on Monday. I'll be travelling to another town to see an optician with an excellent reputation, the latest equipment and (more than likely), very expensive glasses for sale. A short drive from there is the medieval village of Lavenham, where the houses haven't changed much since Tudor times. We usually have afternoon tea at the the 15th century Inn, so something to look forward to.
Weather here is sunny, but windy so I want to get out and prune the roses.
Hope we have some better news from Sylvia about Raymond in the coming week.
Enjoy your weekend.
Love,
Gill xxx
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Hello Everyone,
I hope everyone is relatively well today. I just popped in to say that I'm thinking of you Sylvia, and of your dear husband. Sending you the warmest wishes for good news and improvement for him soon.
Love, Pam
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Kath - so sorry to hear that your jaw is still bothering you - hope it clears up soon. They prescribed Doxycycline - one week only. I have them, but have not taken any yet. I am allergic to Penicillin . Which antibiotic are you taking?
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hi Adagio
Starting to look better today thank goodness but that will teach me to poke and prod! Doxy is a good safe tetracycline antibiotic usually used for resistant infections like the community acquired pneumonias.
Side effects aren’t too bad and similar to most antibiotics. Community acquired pneumonia can be quite resistant to other abos that’s why they use it. You just need to take care if u are taking supplements such multivitamins antacids and calcium or magnesium and don’t take the doxy within two hours of taking the supplements. It will make u feel much better more quickly.
Love Kath
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Hi Gill
I must say I am concerned about Raymond and Sylvia, and after that I don't know what else to say. We will hear when it's time, I suppose.
I also have leg bruises, and they come easier now. My dermatologist says it's part of aging, especially since I have had a lot of sun in my earlier life. I also have varicose veins which have gotten more evident over the winter. My arms from wrists to elbows also bruise easily. I am not too worried about them being a sign of something more serious because if that was the case there would also be bruising on other parts of the body.
It was so very difficult at the time of my diagnosis, for the diagnosis itself and since it coincided with the exacerbation of my husband's ailments. After my 1st chemo treatment I was hospitalized, and after that most of our hospitalizations were for my husband, I spent many hours sitting in his room in the hospital. The five years since his death, and six years since diagnosis, have gone fast, and the last year has been spent dealing with my shoulder. But, as our priest said in his sermon yesterday, we should count our blessings.
Good luck with eyes today! And enjoy your day out, it sounds wonderful to have high tea in a medieval town. There are so many wonderful places in the world, aren't there?
It is rather amazing to think of all the researchers toiling away, I'm sure someday finding a cancer long before it's obvious will be possible.
I hope you have gauntlet gloves for your pruning, I ordered some new ones that look quite serious. You are a month or so ahead of us, weatherwise. We expect another very cold few days this week. It's been very up and down.
I am off and like you, I am hoping to hear good news about our friends.
Love Mary
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Hi Mary,
I hope Sylvia has someone to offer her support and give her time to eat and rest properly. I believe Sylvia mentioned that she wasn't religious, nonetheless, she and Raymond are in my prayers.
I don't think I've ever had much bruising on my body, even after the core needle biopsy and mastectomy. My legs appear to bruise without any knocks at all. My daughter was always covered in bruises during her early years at primary school. It's a miracle that I wasn't accused of abuse, the teachers probably noticed how accident prone she was. She probably inherited the clumsy gene from Michael.
Of course you're absolutely right about wearing gauntlet gloves for pruning, I do find gloves annoying though. Most of my weeding is done at random moments, when walking down the drive to the garage or bringing the logs in. No time to grab the gloves before tackling a thistle and I have the nails to prove it. Gardener's hands are not attractive. I have a theory that if I had a professional manicure, wore nail polish and looked after my hands properly, I could cure myself of scrambling for weeds just before driving off and arriving somewhere with soil still under my nails.
Another newsletter from Chris Woollams arrived today. I've looked at the piece on coronavirus. There's nothing there that isn't readily available on the Internet. Other articles from reliable sources are not so sure that bats are to blame for the original outbreak. I just hope that someone somewhere comes up with a reliable vaccine very soon and I don't care if it's 'big pharma' or not! It's generally agreed that older people are most at risk. Does that mean us, I wonder?
My eye test didn't show anything very important. My left eye needs a slightly stronger lens for reading, driving glasses aren't required yet, which is a relief. Chose some chic, (I hope), new frames and spent the afternoon at a Medieval hotel in Lavenham. We sat right next to the inglenook fireplace, complete with roaring ash wood fire and ate roast beef and horseradish sandwiches followed by a Suffolk cream tea with clotted cream and homemade strawberry and raspberry jam. We spent the night here about five years ago when Michael was celebrating his 60th birthday. We had a suite with very uneven floors, low ceilings and once the lights were out the moon shone through the cracks in the wattle and daub walls. Not the most restful of nights. I'd hoped to see the resident ghost, a former housekeeper who had become pregnant out of wedlock. The unborn child's father agreed to marry the housekeeper, but changed his mind and jilted her at the altar. The poor lady returned to the hotel and hanged herself.
Maryjv's chemotherapy seems to be going well. Unfortunately her port has become infected and has to be removed. I had a PICC line which was so easy to have fitted and worked well. The disadvantage was having to have it flushed every week and needing to keep it dry whilst having a shower or bath. Hope everything runs smoothly for Mary from now on.
Storm Ciara hit the UK on Sunday and is still bringing trees down, destroying fences, sheds and greenhouses. Hasn't brought snow to Norfolk, but we had a few minutes of heavy hail yesterday evening. Apart from the wind, it's a bright and sunny day.
I can't help thinking that I ought to have written something about breast cancer on a breast cancer site, but nothing springs to mind, which on a personal level is probably a good thing.
Keep warm and look after your arm.
Much love,
Gill xxx
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Hello everyone,
Just to let you know that Raymond is still in hospital. He is alright, but has had to hava a pacemaker fitted.
He needs to have a coronary by pass operation and this is not done in Exeter and he is waiting to be transported
th Hammersmith hospital in West London.It has all been a nightmare since Jan25.Ishall explain more later.
Thank you for all your concern.
Love,
Sylvia xxx
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Hello Sylvia,
What a worrying time for you both. Ridiculous that Raymond will have to travel so far for his bypass surgery, but very glad that the worst will soon be over and Raymond will be well again. Hoping his recovery time at Hammersmith Hospital will be short and that both of you will soon be back home in Exmouth for a good rest.
My love and best wishes.
Gill xxx
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Thank you Gill, having surgery to remove port on Friday then wait to have it replaced...in the mean time will have taxol administered through veins...not looking forward to that but hoping we can place new port soon 🙏❤️ Keeping you all in my thoughts and prayers and glad I am done with AC treatments
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Hello Maryjv,
I thought port infections were relatively rare compared to PICC lines - not that I've ever known anyone with a PICC line infection. I had my first two FEC infusions via my very tiny, difficult to find veins. I was surprised that the nurse only needed two goes each time, it was OK, very relieved to have the PICC line though. On with the taxol and then chemo will soon be a thing of the past. I found surgery very easy compared to chemotherapy, I think most women do, so put that to the back of your mind for now and focus on being kind to yourself, resting when your body tells you to.
Gill X
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Thanks for update Sylvia. Best wishes to you both.
Gill, keep an eye on your veins. Mine were quite damaged by the chemo before we decided to get a PICC. Had I know I would have requested up front. I can still see where they have collapsed
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Thanks Gill, I was thinking the same thing...how did I get an infection with it being located under the skin! Either way, has to come out on Friday and then wait for a new port placement!
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hi everyone
Hope you are all doing well?I’ve been try to catch up with all the posts and note that some of u are talking about excess bruising. Often supplements such as fish oil and magnesium can act as blood thinners and cause bruising. The chondroitin with glucosamine also acts as a blood thinner and is known to cause bruising sothat may be the reason.
My thoughts are with Sylvia and Raymond. It is a very frightening time. They are doing incredible things in the cardiac field now though which is good and he sounds like a very fit person so that is also a major plus. My thoughts and prayers are with them both. Stay well everyone
Much love
Kath
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Hi Helenlouise,
You're so right about vein collapse after chemotherapy. Mine were never good in the first place, so I asked for a PICC line before chemo. Oncologist was worried about infection and I had two infusions before the PICC was allowed . I do still have a good vein along the inner side of my wrist. No idea how that one escaped.
Hope you're still enjoying work and the memories of your amazing Japanese adventure.
Gill xxx
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Hi Kath,
It's useful to know that some supplements can cause blood thinning and thus bruising. I had no idea, and whilst I only take vitamin D and vitamin C I'd been considering fish oil. I'm afraid that I'm guilty of ignoring those ever growing lists of possible side effects that come with supplements and meds these days - must try harder.
Thinking of you all in Australia, especially those who have lost their loved ones or their homes.
Gill xxx
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hi Sylvia
I am so glad to hear from you! I am sorry Raymond has these heart conditions, but I am relieved that he has solutions to the problems. It is dismaying that things are not more convenient for the patient and you. I am sorry this has been a nightmare for you both. If it's any comfort, the procedures you mentioned are done very often here, and are well tolerated.
I am thinking of you both often, and send you my warmest regards.
Love, Mary
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Hello Mary and everyone
Thank you for all your warmest thoughts. Raymond is now in London and surgery is tomorrow.
I am sick with worry back here in Exmouth.
I love you all.
Sylvia xxx
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Hello Sylvia,
It's deeply unfair that you are away from Raymond when you need to be together. My prayers are with you both and also with Raymond's medical team. I don't know if it helps at all, but I have several friends and acquaintances who have undergone bypass surgery, all were successful - no exceptions. You will have seen how well loved you are on the thread. I'm sure you and your dear Raymond will be in all our hearts tomorrow.
With very much love,
Gill xxx
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Sylvia,
I understand how sick with worry you must be - but in this situation the only thing to do is to trust the surgeons and the medical team - it is all in their hands. If Raymond is as strong a person as you are, he will come through the surgery just fine. Hoping that you do not have to be separated for too long - that must be very challenging. Wishing only the best for Raymond and know that we all care and will be praying for him ( I know you are not religious, but I have always found comfort in knowing that people are praying for me).
Keep us up to date. We miss you here!
Adagio
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Oh Sylvia, keeping you and Raymond in my thoughts and prayers🙏❤️ Glad he is getting the care he needs
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Wishing Raymond a successful surgery and we are thinking of you both. I am very sorry that aren’t there with him. Trust he is in good hands and with a speedy recovery you will be back together soon. Love and best wishes. Yes we miss you x
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