Calling all triple negative breast cancer patients in the UK

hi Paula

Glad you had a break with a nice trip! I wanted to tell you also that I have had pain since right mastectomy. Also During chemo I tore my rotator cuff somehow, which didn't help. Ever since the side of my chest wall going up into the shoulder has been constantly painful. I am sure my pain is caused partly by shoulder and partly by perhaps scar tissue from breast removal, perhaps because of muscles and tendons being cut and I don't suppose I'll ever know for sure. The information I got after BC surgery on scar massage was very brief and heard through a haze of post-surgery drugs. As Gill says elsewhere, nothing is ever the same. I have had 2 shoulder surgeries and the pain is still with me on the side of my chest and travels lightly across breast area.

Other than that, I liked your pics, a nice beach and cute grandson with grandpa!

Later, love, Mary

Hello Sylvia,

I agree that it will be a day to celebrate when surgery is the only treatment necessary for cancer. Scientists are working on harnessing the body's own defences to tackle cancers but if progress has been made, we're not hearing much about it. I do think that it will happen in the not to distant future though. In years to come people will look back on the decades of chemotherapy and radiotherapy as barbaric. Poisoning and burning our bodies does seem to be a strange way to go about killing a group of rogue cells. I never minded the surgery. Quick, efficient and painless. I notice from comments on other threads that women sometimes wake up from a mastectomy with drainage tubes in place. I don't know if this is the case in English hospitals. I imagine reconstruction surgery might require drainage both to the breast and the abdominal area. I wonder if hospitals are still doing reconstruction, given the ever increasing waiting lists for any kind of surgery? It's a very lengthy operation. I think I was told it would be about seven hours.

I have known for some time that The Queen Elizabeth Hospital in King's Lynn is falling down and the roof is being held up by props. A risk assessment has clearly stated that the roof is in imminent risk of collapse and both staff and patients are very frightened. It's only a matter of time before a major tragedy occurs. Some hospitals in similar positions have already prepared corporate manslaughter documents that will be served when the inevitable happens. Johnson and his chums have got away with far, far too much, they honestly believe themselves to be untouchable and above the law.

When reading about the dangerous, crumbling hospitals I noted it was considered that some floors where now too fragile to take the weight of morbidly obese patients over 19 stones and the NHS has more than its fair share of those to deal with. I have never known a Prime Minister and Cabinet to be so destructive, callous and self-serving. I wonder just how bad it has to get before the Tories on the back benches revolt. Noone in the present Cabinet is fit to be an MP, never mind govern. I've no idea if the NHS will survive for even another year.

There's no doubt that the thread has slowed to a crawl since the pandemic began. It's always good to hear from members we know so well but who are no longer regular posters. Flora's post was such a welcome surprise. I always look forward hearing Mary's news too and that of our Australian posters. We really need new people to join us to keep the thread fresh and up to date with more recent experiences of diagnosis and treatments.

It was dull here again today and wet this morning. The garden has been a disappointment this year with an army of slugs eating its way through much of the Summer bedding while the ever increasing deer population ate the shrubs. My potato crop was poor and the runner beans aren't producing the crop I would usually expect by mid August. I do have a glut of apples though and the plums aren't too bad. There aren't sufficient pollinators around this year. I've hardly seen any wasps and the bee population has declined. It must be the first time I haven't been stung for many years. It seems to have been a bad year all round.

Look after yourself and Raymond.

Love,

Gill xxx

hi Gill

I share in your feelings of dismay at the events taking place in Afghanistan. Blame and pointing fingers are everywhere, slimy bureaucrats trying to free themselves from any fault as events unfold. Our president blathers about only finishing what Trump started, although he has cheerfully dismantled everything else Trump put in place in his efforts to make us safer. Biden is a buffoon, at the top of a pile of scheming yes-men. We have deserted civilian Americans, friendly allies and left behind millions of $ worth of military equipment in Afghanistan, which the Taliban will use to further terrorize civilians.

Who are these people in such positions of power in government? I think they are not the wise people.

Love, Mary

Hi Sylvia

I do hope your back is feeling better. I was trying to remember if I've ever heard you complain of pain and I don't believe so. It would be surprising if you didn't have a bit of arthritis somewhere, or it is muscle strain that you're dealing with.

I was reading about the experiences of you and Gill and your BC journeys. When I was setting up mastectomy my surgeon wanted to remove both breasts and have the Plastic surgeon present to perform reconstruction at the same time as mastectomy. It was not explained to me how that was done, but I told her my husband was very ill and I needed to heal quickly to take care of things at home. I didn't even realize that, had I had it done, I would have needed a lot of care myself. I was only kept in the hospital overnight, and the next morning early I awoke to see papers thrust in front of my face. A nurse was trying to tell me how to exercise at home while I was mostly asleep! Another nurse came in and told me how to take care of my drains for the next week or so. Breakfast was brought in and a little later an aide with a wheelchair entered and told me it was time to go, I didn't get to finish eating, they must have really needed my bed!

I called a friend to take me home. When we got there the Home Health nurse was with my husband, and I could tell he was not doing well at all. She decided to take him to hospital but she didn't want to leave till I had someone else to stay with me. My sis-in-law came and off went my husband with the Nurse. He stayed in Hospital for 5 days, he would get "exacerbations" of his COPD unless he stuck to a very strict diet. Which was enforced by me, to be honest. If he took in too much sodium or fluid, the fluid would build in his body until he would have to be hospitalized. A dreadful condition, and we made trips to the hospital at least every month or two.

I don't think, in all honesty, that I kept up my exercises perfectly. I did manage my drains on my own, no help was offered. I felt I healed quickly, but I do think if I had kept up exercises better my shoulder might not have become injured a couple of months later.

It all seems so chaotic looking back, i can't believe I came through it all, but I am definitely not unscathed.

Love, Mary

What's uuuuuup?  Hi there Sylvia and Everyone ...

Just announcing I finally went and got my Pfizer vaccine.  On Friday I saw that some US doctors had a planned walkout staged in Florida for Monday, as well as their announcement that they are going to stop treating unvaccinated Covid patients, out of protest.  (pretty sure if anyone did that they would lose their Medical License.)  I also heard a report on Friday that Pfizer was receiving approval Monday, and that after that news, I felt it would be hard to find Pfizer vaccines, which has been the most popular brand here in the U.S.  I quickly went to the local Costco on Saturday for my vaccine, with my DH.  It was hard to find a local place that didn't only have Moderna left, without having to wait until next week or later.

I feel so relieved having taken the first step.  I wasn't scared of side effects such as pain, just wanted to make sure there wasn't a contradiction in bc survivors.  

I hope everyone is doing well!

Love you all and many prayers,

Debra  

Hello Sylvia,

I've always found gardening and driving to be very hard on my back, though my problems began in my early thirties. As in your case, I rarely have any kind of warning, so carry on with whatever I'm doing. The pain arrives a day or two later. I often use a hot water bottle or a pack of frozen peas and avoid sitting. Your treatment sounds much easier and I've made a note to order some arnica ice gel .

I'm pleased that you've recovered sufficiently to enjoy a sunny walk with Raymond. How are you finding grocery shopping in Exmouth? There are some shortages here both in Tesco and Waitrose and a friend near St. Albans tells me that an extremely large Sainsbury's near her has several empty shelves. Prices are also rising.

You're absolutely right about the emphasis being on hormonal status rather than the actual type of breast cancer. I know that Invasive Ductal Carcinoma is the most common at 80%, but other cancers are available! I think I need to do some reading on IDC compared to Invasive Lobular Carcinoma. I did look through some studies last month, but not in any great detail as I was looking for more information about metaplastic breast cancer. Reading through scientific studies takes up a lot of time for me as it was a world that I'd never explored pre-cancer. I do find it interesting and often compelling at times, despite having to look up so many scientific terms and abbreviations before I'm able to achieve any reasonable understanding of what's being said.

We are regularly informed that being overweight increases the risk of cancer generally. Some of the women I know who have been diagnosed with ER+ breast cancer have carried extra weight, but not all by any means. The group of friends you mention are all fit and healthy which makes a cancer diagnosis all the more frustrating. I wouldn't want to take the health risk of excess weight any more that I would take my chances with tobacco or excess alcohol. Neither would I risk being infected with Covid by refusing the vaccination.

I found Debra's post interesting. While I can understand the frustration that doctors feel about having to treat unvaccinated patients, not treating them isn't something I would want to see from NHS doctors. I wonder what the stance of US health insurance companies will be if the Florida doctors' protest takes off? Perhaps those refusing the vaccine might like to consider the risk they pose to medical staff, hospital workers and patients.

We've booked our annual flu vaccination with Boots at our local Waitrose. It's at the end of September. Neither of us would consider having the flu vaccine and Covid vaccine at the same time. The Covid booster is looking more important as immunity has dropped to much lower levels for those vaccinated six months ago. As predicted, infections and deaths in the UK are rising again and Scotland is considering reintroducing restrictions if the rise continues when schools reopen.

Wishing you and Raymond a few more sunny walks while Summer is still with us. Perhaps avoid the Bank Holiday tourist invasion though.

Love,

Gill xxx

Hi Sylvia and Gill,

Just letting you know I read both your replies! Thank you for the community of sharing.

New Question: Sylvia, do you take a multivitamin and if so, what one? I read an online source that listed (yes, more than 1 element) what specific vitamins TNBC survivors should avoid, and they were all the common ones found in all the multivitamins. I certainly don't want to take 8 different bottles for each essential vitamin as a standalone option.

Please let me know what you are taking, and anyone else who wants to chime in too!

By the way, I don't eat meat anymore. I just don't like it. I do cook it for my husband, but then I go upstairs so I don't have to smell it while he eats it. LOL It's not that disgusting to me.... mainly chicken smells the strongest to me. I have discovered what I call "fake you out" meat and cheese. I look for stuff that is plant-based without soy. So actually he does eat (and loves) the fake you out hamburgers now, and they taste just like a real hamburger grilled. Thank goodness, and they come preformed, so much easier to make. They are expensive, as they are only sold in a 2-pack, but when Sprouts Farmers Market has a sale, they are usually buy one get one free, which makes each patty come to about $1.75.

I eat the wild caught sockeye salmon still.

Much love to everyone - have a wonderful day!

Debra

Hi Debra,

It was interesting to hear what you said about meat. I very rarely eat red meat and couldn't stand the thought of any kind of animal product during chemotherapy and for a few weeks afterwards. My oncologist said that my protein levels were so low that she would have to stop my chemo if I didn't do something about it. Post cancer treatment I decided to go back to being a vegetarian - I had been vegetarian about twenty years earlier, but lapsed. However, I had C Difficile during my final chemotherapy treatment and can no longer eat a healthy vegetarian diet without having colitis - a legacy of C Difficile.

Good luck with your plant and salmon based diet. It sounds very healthy. Perhaps you'll be able to convert your husband.

Love,

Gill xxx