Calling all triple negative breast cancer patients in the UK
Comments
-
Hello my good friends
Thank you once again for all your very kind words and good wishes.
Raymond will be having surgery just about now. It lasts about four hours and then he will be in Intensive care for a couple of days.
I am overwhelmed by your kindness.
Love,
Sylvia xxx
0 -
dear Sylvia
As you can see, we are all pulling for Raymond and trying to comfort you from afar. I am so glad Raymond is getting the surgery he needs. If you are not there, then you must have faith that all will be well, and prepare for when Raymond comes home. He will need time to rest and to let you fuss over him. Does he eat the same way as you? If so, he is probably healthy overall and will recover well, it does take some time. Spring is coming so that will help, you can both spend a some time outdoors while he recuperates.
Thinking of you both, and sending prayer as well.
Love Mary
0 -
hi Maryjv
I wish you good luck with your next port, and I'm sorry for your trouble. I have seen this happen before but not often. Glad you are doing well and that you have finished AC.
Love Mary
0 -
Hello Sylvia,
I agree with all that Mary says. Your belief in eating healthily will Stand Raymond in good stead. Hoping for some early spring sunshine for you both to enjoy while Raymond is recuperating.
The hours of waiting must be difficult to bear. Just remember, you have so many people here thinking and praying for you both.
Sending my warmest wishes.
Much love,
Gill xxxi
0 -
Dear Sylvia
You are a strong woman who has been encouraging us. Raymond will get better with you at his side.
Difficult times come and go.
Warm wishes
Jags
0 -
hi Jags,
I hope you are doing very well, and life is full. For me it's been busy, the time goes by too fast.
Best to you, love, Mary
0 -
hi Gill
I hope for the best outcome for Raymond, and for Sylvia. It must be maddening for her, to not be at his side now, I hope he is home soon.
I have stopped taking Advil, it is ibuprofen sold over-the-counter. It thins the blood and I can see an improvement in my legs after just a few weeks. However, now I am stuck with my aches and pains, always there is a trade-off. Docs say to take Tylenol instead, or acetominaphen, but it does nothing for me except make me groggy. My varicose veins don't help either.
I don't think having a manicure would cure you of inpromptu weed pulling, I've tried that and I just ruined my manicure very quickly. There are gel polishes that wear like iron, but they ruin one's nails until they grow again. I haven't done it, but have seen the results.
I saw an article somewhere that claimed that coloring hair causes breast cancer, I wonder if that's true.
I also hope the new coronavirus can be stopped soon. Perhaps warmer weather will put a stop to it. Someone told me that the Chinese people in general have at-risk lungs, because of large numbers of cigarette smokers, and the bad pollution in China. Thus making them more susceptible to the virus. I haven't seen that in print anywhere, and I wonder if it's true.
Congratulations on a decent eye test, and the rest of the day sounds wonderful. Your descriptions of the sandwiches and teas makes me hungry for warm pastries and hot Earl Grey. I agree, wouldn't have liked the suite with cracks in the walls, not sure about the ghost. Although I have seen a ghost, but that's another story.
I hope Maryjv gets well over her infection before they give her more chemo. It seems as if she tolerated the first rounds well. I did not have a single problem with my port, but a friend of mine had a leaking port that became infected and the Docs didn't know. They proceeded with chemo in a PICC line and she became quite ill. It is now healed, but she has refused more chemo.
I had a week too. My brother and I had gone to see my elderly aunt, a retired nun, after we were told she wasn't doing well. They expected her to live for at least the rest of the week, this was Tuesday. She was alert and smiling, but not talking, and could nod and use her eyes for expression. We had a nice visit, after awhile she fell asleep and was wakened several times by friends coming in. They all left and her breathing started to change and soon she just slipped away and was gone. It was a very peaceful death, but I sure did not know I would be sitting there when she went. I'm glad I was there, she was a wonderful woman and at 93, she had had a full life. The funeral is next week, I expect I will see a lot of cousins there.
Hope the storm has passed, sounds like it was wild in places.
Like you, I have no other BC news, which is good. I hope Maryjv gets squared away so she can finish chemo, and Helen louise can heal up properly without painful skin grafts.
Hope we hear from Sylvia soon with good report.
Love, Mary
0 -
Thank you all for your most needed warm thoughts! Had my port removed Friday, replacement next Friday and then starting 12 weekly rounds of taxol on 2/24! Wishing everyone the best and hoping you all feel better today than yesterday🙏❤️0
-
Hi Maryjv,
I shall be thinking of you on the 24th. Just keep on looking ahead, not long now, the weeks will just fly by. Hope your daughter is coping and you're still managing to have some fun together, despite the trials and tribulations of chemo.
Love,
Gill xxx
0 -
Hi Mary,
Yes, very frustrating for Sylvia and Raymond to be separated. The UK is being battered by storm Dennis tonight. There are 60 miles per hour winds and torrential rain in Sylvia's neck of the woods at present, so I doubt if she would even attempt the long journey into London either by train or car. I hope Raymond has had is surgery by now and is recovering well. Talk again later.
Much love,
Gill xxx
0 -
Hello everyone,
I do not have the concentration to post much at the moment,but I wanted to say how proud I am of you for the way you are keeping our thread going.
Thank you all for the warm thoughts. Raymond will read themw hen he gets back home.
iiHe is slowly recovering.
Love,
Sylvia xxx
0 -
Hello Sylvia,
What a relief to have such good news. You just concentrate on finding time to rest and prepare for Raymond's homecoming. I hope it won't be too long before you're both back together in your own home.
Warmest wishes for Raymond's recovery.
Much love,
Gill xxx
0 -
Wonderful news Sylvia
0 -
That is good news about Raymond. Don’t worry about us Sylvia. Concentrate on Raymond and yourself. We will be very happy to hear from you when we do. Take care. Love and best wishes xx
0 -
hi Sylvia. I am so glad Raymond is on the road to recovery. What a relief!
Take care of yourself too, and come back when you are ready.
Love Mary
0 -
Hi Mary,
Good start to the week, hearing that Raymond is recovering from his surgery. Hope that he can be transferred back to Exeter Hospital soon.
I see your week had its moments too. Your aunt reached a good age and had a gentle end to her life. Still a shock when someone dies earlier than expected and while you're in the room. Perhaps your aunt felt able to let go while you were with her. Hope you enjoy celebrating her life with all your cousins.
Mary, you can't possibly say that you've seen a ghost and not expect at least one of us, probably all of us, to want the whole story. I've always been interested in ghosts My cottage is reputedly haunted by a 12 year old Victorian child who burned to death when her nightgown caught fire as she stood in the half inglenook fireplace to keep warm. Neither Michael or I have ever seen her or even felt her presence, so maybe she's finally at peace. Other old houses in the village have their own ghosts. I'm never sure whether that's a good selling feature or not.
I've read about possible links between hair dye and some cancers. Mainly breast cancer, leukemia, lymphoma and bladder cancer. The research seems to be inconclusive and opinions are still divided, though there's more agreement about the possibility of hairdressers who use dye without wearing gloves being diagnosed with bladder cancer. I always had blonde highlights with foils, so the colour didn't touch my scalp except when it was washed out. Apparently, the darker the dye and the longer it's left on, the greater the risk. Probably!
That's about all for now.
Keep warm,
Love,
Gill xxx
0 -
Hello everyone,
I've been reading an article in yesterday's 'Times' newspaper - 'superbugs threaten to stop chemotherapy from working'. Oncologists are worried that chemotherapy will become unviable within the next decade. As we know, chemo patients are susceptible to infections when their white cells are low. Doctors rely on antibiotics to clear the infection, however, the rise of antibiotic resistant bacteria may mean that chemotherapy will become too dangerous to use. One in four oncologists in the UK have seen an increase in antibiotic resistant infections in the last year. My own infections, ( I had five over 6 chemo cycles), were treated with universal antibiotics, as the source of infection could never be found. After cycle six I developed C.Difficile and with very low white cells my infection became very difficult to treat. My white cells recovered after a few days and the antibiotics began to work - maybe I won't be so lucky if there's ever a next time. Research found that 23% of patients develop infections during treatment. More than a third of patients required surgery for their cancer and of these 5% developed a drug-resistant infection. The research lumps all cancer surgery together, breast surgery is relatively superficial and therefore much safer than many other surgeries. Many on the thread probably already knew all of this, but I thought it was worth sharing.
Politics in Britain is a complete mess. We've never had a Government like this, all the insightful and experienced ministers have been sacked or forced out and we are left with fools who go along with anything Boris Johnson wants - no matter how mad or dangerous. Our NHS is suffering hugely, doctors and nurses are exhausted and very many are leaving.
Hope everyone is doing well, with special thoughts to Sylvia and Raymond. Weather here is dry and sunny after the recent storms so I have to do some work in the garden.
Gill xxx
0 -
Wow Gill, thank you for posting. Very troublesome regarding antibiotics and chemo especially for us TN with chemo being the ONLY effective means of treatment!
0 -
Hi Maryjv,
I guess we all knew this was coming. Antibiotics have been so overused, not just by doctors, but also by farmers and vets. Apparently patients in the UK often demand antibiotics for minor illnesses that will get better naturally, all by themselves. My daughter's a doctor and she's met these demanding patients many times. There's a lot of research going on and I'm fairly confident that alternative antibiotics will be found, we need to be more careful this time around.
Good luck with your Taxol.
Love,
Gill xxx
0 -
Hello every one
I just wanted to let you know th at Raymond is still in Hammersmith Hospital in London and is making progress slowly.I just want him back home to good nutrition and my care and away from being filled with different drugs.He has been in hospital for nearly four weeks and it has turned our lived upside down.
Love,
Sylvia
0 -
Hello Sylvia,
I hadn't realised that Raymond had been in hospital for nearly a month. That's very frustrating for you both especially when you're used to good quality nutritional food which is very far from most NHS offerings. I know that recovery is slow after heart surgery but I'd hoped that Raymond could be transferred back to Exeter so you would at least be able to spend more time with him. Hope he'll soon be back home in your care and eating proper food again. You must be climbing the walls with all the worry. Even so, please take the time to look after yourself properly.
With much love,
Gill xxx
0 -
Dear Sylvia,
You must be so worried about Raymond - hoping that he will be transferred closer to home soon so that you can take good care of him. Hospitals are not the best place for recovery - and being so exposed to all manner of germs and all the drugs that are necessary (or not ) in order for progress to happen. Like Gill said - take time to look after yourself so that you will be ready to assist Raymond when he does come home. Four weeks is a long time!
Thanks for keeping us up to date.
0 -
Hi all,
Good to hear some progress for Raymond albeit very slow.
The issue around resistant infections is so very scary. I have a friend who had kidney failure last year and ended with C Diff also. It perforated her bowel and she was so dreadfully ill we thought she wasn’t going to make it but finally and thankfully she has recovered. Unfortunately she now has a stoma.
I met with breast surgeon and plastic surgeon Wednesday and they agreed no surgery at this time, more important to treat the cancer systemically. They found me a private MO who we saw the next day. She can access treatment outside the public system. The plan is to revisit in two weeks, have a CT PET, draw bloods for tumor gene sequencing, recheck the familiar gene panel and work out all options. She was very adamant this is not the end of the road but the beginning. So that is very encouraging. Just a pity Melbourne is 3.5 hours drive away.
Coincidentally, I have developed lower left jaw pain over the last couple of days. It not bad bad pain and paracetamol seems to keep it in check. Went to the dentist, he did tests each tooth and took an X-ray but couldn’t find anything wrong. He did ask how long till my scans. I just wonder if there’s something untoward going on there. Suppose I will know soon enough.
I hope your all doing as well as can be. Thanks you for reading xx
0 -
Hello everyone,
I am writing to let you know that Raymond is on his way home from London.He is coming home here to me,not to any hospital.
He was in the hospital in Exeter for three weeks, During the first week he was treated,but the next two weeks were a total waste as he waited for by pass surgery that is not done at Exeter. He spent a week in London.
I am not expecting him to be in a good state.
The food has been awful and the drugs horrendous.
It will be late when he gets back this evening by hospital car.
Thinking of you all.
Love.
Sylvia.xxx
0 -
Hello Sylvia,
You must be so relieved to have Raymond back with you this evening. You can now give him all the food and care that he needs. Hospital food is shocking, unhealthy and often unsafe. I'm sorry that he is not in a good state and hope that he'll soon regain his health and grow stronger at home with you.
With love to you both,
Gill xxx
0 -
Hi Helenlouise,
Your private MO sounds very knowledgeable and positive. I know that you were never keen on more surgery so this seems like a whole new plan - just a shame that you'll have to travel for three and a half hours. It will be worth it though. Hope the jaw pain turns out to be nothing to worry about. I think we'll all have our fingers crossed that your next appointment will be as positive as the last.
Love,
Gill xxx
0 -
thanks for your encouragement Gill. I too feel hope. So good to hear Raymond is coming home.
0 -
Sylvia and all,
I was absent most of the week due to several things that occurred at the same time. Much has happened here with all of you as well. Sylvia, I am so glad your nightmare is banished by Raymond's arrival home and glad that he is back under your capable care. Please give him my best wishes. Later we will hopefully get back to our discussions of thoughts on many subjects. Now my wish is that Raymond will soon be stronger and enjoying life again. I shall talk to you later.
Love, Mary
0 -
hi Helen louise
It sounds as if you have some doctor-exposure coming up, but it also sounds as if you have some options by having further testing. I will make a guess that the Docs will try to pinpoint which of the newer immunotherapy drugs will match your situation. There are so many new things out there that have come along in the last several years. It makes me very hopeful, and I'm glad you feel the same.
As for the jaw pain, I was wondering if you were taking one of the drugs that promotes bone growth? The only other thing I can think of is sinusitis, which sometimes gives me toothaches and/or jaw aches.
I also think it's worth the long trip to see a good and caring MO.
Love, Mary
0 -
Hi Gill
Your recount of the article on antibiotic resistance is timely and scary. There are so many new infections popping up these days. And chemo dosing is often to blame. My friend with Lung cancer also had this happen after a bad port placement became infected, and the MO proceeded with chemo, not realizing in time that it was infected even after removing it and putting in a PICC line.. She was in the hospital a month and had a long recovery period. Fortunately for her the large amounts of antibiotics she was given did work.
Speaking of illness, the latest viral illness that is causing global worries, the coronavirus, is still spreading. Antibiotics are of no use with this, one must simply get over it on one's own since it is viral. My daily newspaper usually has several articles on it, it seems to be easily transmitted. I'm glad Raymond got home before there is a lot of it in UK, although yesterday's paper said it had arrived in UK, experts think it came in via a man who had attended a Singapore business conference. We here have some 36 cases here in USA, it seems most of that number are patients who came off the cruise ships that were stalled in Asia.
It sounds as if the NHS is on hard times and I am sorry about that. We have a system here that includes many different forms of health insurance, but we have a Presidential election coming up and as usual, there are politicians running who are promising Medicare-for-all if they are elected, which translates as sub-standard care for all, except of course the politicians and the movie stars who will still have their excellent care.
I'll talk to you later, love, Mary
0
