Calling all triple negative breast cancer patients in the UK
Comments
-
Hello Sue,
This is just a quick line to say i am so sorry to read that you are having such a difficult time. Make sure that, before the next chemotherapy session, you are given everything to make you more comfortable. If you feel you are not ready for the next lot of chemotherapy, do not have it.
I do hope you will manage to eat a bit more as you have to try to keep up your strength. Try to rest and relax.
I shall talk more during the weekend.
Love.
Sylvia xxxx
0 -
Hello Sylvia,
It seems that any issues with the site's security have now been resolved. IT security in general is now a complete nightmare for both individuals and organisations everywhere. Cyber attacks are becoming commonplace. We've avoided internet banking for that reason, but as more and more banks close their high street branches, I doubt that we'll be able to hold out for much longer. Many hospital IT systems are both insecure and over complicated, wouldn't it have been wiser for patients to have been given paper versions of their own (FULL) medical notes to keep for themselves? We know that many records are either lost, confused with the records of other patients or inaccurate. I dread to think about NHS IT security. It seems to me that our hospitals may well be vulnerable to cyber attacks.
I've become increasingly fed up with with wearing a prosthetic left breast. I'm not brave enough to go without it outside the house and garden, but my bra riding up and eventually becoming visible to all is irritating and a bit awkward at times. When - or if - I reach my five years out, I'm going to have reconstruction. I think I'd have been much happier with a double mastectomy, but the NHS no longer offers this. I wonder what others here think?
I've given up hope of ever seeing the Sue Gray report, the Russia report, the elevation of Lord Siberia report, the covid report, the billions dished out to Johnson and Hancock's mates for PPE/track and trace report........ It's high time that the decent Tories got rid of the Prime Minister and the entire Cabinet. Laws to limit the powers of the Judiciary and the Civil Service and to silence the voices of protesters, make me wonder if we'll ever have another General Election. Two days ago, Lord Rothermere announced the importance of the freedom of the Press!!! Rant over.
One of the long term side effects of my chemotherapy has been dizzy spells. Last Monday I had a moment of dizziness and caught my foot on an uneven paving stone on the garden path and fell my full length. I grazed my knee, twisted my ankle, cut my foot and pushed two fingers on my left hand so far back that they were numb. We have a large garden and Michael couldn't hear me calling. I dread this happening in town, or anywhere in public. Felt so old!
Hope your week was less eventful. I see that you're still missing your head.
Wishing you and Raymond a peaceful week.
Love,
Gill xxx
0 -
Hi Mary,
I have huge sympathy for your frustration with contractors. Home improvements and renovations must be in the top five most stressful life events - if not, then they should be. In recent years we've endured the joys of a new kitchen, new roof, new conservatory, rewiring, new bathroom and new windows. Nothing ever goes to plan and in one way or another we always end up paying out far more than the original quotation. Our house was built around the 1850s so we expected some costs over the years, but underestimated the 'hidden features' like asbestos under the old roof, crazy mix and match plumbing, lethal (apparently) wiring and carpet moths in new carpets. I salute your bravery and wish you luck!
Mary, I'm always impressed by the amount of care you've received post breast cancer treatment. It must give you great peace of mind. I've had an annual check for two years only, a mammogram, for 5 years after treatment, no scans, no help with chemotherapy side effects, and no appointments at all with my oncologist, though some other parts of the UK seem to be offered a great deal more. Postcode lottery!
Take care mary,
Love,
Gill xxx
0 -
Dear Sue,
As far as the treatment is concerned, your body is coping extremely well. The painful mouth is part and parcel of this treatment. Oncologists insist that you eat in order to keep up protein levels, but the taste of food is appalling and mouth ulcers mean that every attempt to eat and drink is painful. I found the ulcers on my inner lower lip to be particularly bad. You're getting through it though, which is the most important thing. Neutropenia is very common and the injections to bring the white cells back up are working well for you. It wasn't so effective with me after the first 4 doses and extremely slow to help the white cells on my final dose - when I needed it most. This ordeal will be over very soon. Chemotherapy is by far the worst part. It's poisoning your entire body and it certainly feels like you're being poisoned at the time. Your cancer, what's left of it, is feeling a lot worse than you do, just concentrate on that. I think most people need a bit of encouragement at this stage in their treatment. Remember to rest whenever you need to and if that means staying in bed for the entire day, then do it - I did.
Sending you all my very best wishes.
Love,
Gill xxx
0 -
Hello Gill,
Thank you for your post, which once again was most interesting.
I do hope it is true about the site security, but I tend to be very sceptical about this. I am not happy about my cut off picture coming and going. With the way things are I want it to be removed for good and just have an S. Raymond says he is going to try to remove the picture for me.
I do understand your feeling about internet banking. We feel the same and we are not doing it. Raymond does some telephone banking and has the ordeal of talking to an automated voice. It is a pain and I will not touch it.
As for our patients' records, I would love to get my paper file from the hospital, as well as Raymond's one. They are really our property and I know they have wrong information on them. Like you, I do not think our records are safe on the NHS system. I bet the system is not up to date. Raymond said when he was in hospital in London that their computers were still on Windows 7. I do not trust technology and felt much safer when there was just the phone and all your bills etc. were sent to you through the post. The banks in Exmouth are rapidly disappearing and there are no banks in Budleigh Salterton and very few in Sidmouth. Cash machines are disappearing as well and no one really wants cash or cheques.
I do think it is high time that the police issued the rest of the fines and finished their investigation so that the Sue Gray report can come out. I fear we are going to end up in a world war and everything else is going to be forgotten.
I do not like the way we are going. There is no freedom of the press and we are not really allowed to say what we want. I am afraid that our Prime Minister is going to get off the hook.
I was sorry to read that you have been having dizzy spells as one of the long term side effects of chemotherapy and that you had a fall in your garden. How are you doing now?
I do understand about the problems with wearing a prosthesis. I tend not to wear mine unless I am going out anywhere.
I think you have given Sue good advice about getting through chemotherapy. It is a long and stressful part of the cancer journey. Reading what some patients go through makes me realise that I got off lightly. I mainly carried on as normal.
It has not been a restful weekend. It seems just to have disappeared, without much relaxation.
I do hope the coming week is a bit more restful, but we can never know what the day will bring. At least we managed to get a face to face appointment with our GP to sort out some things for Raymond. I just wrote a formal letter to her by email on behalf of Raymond and I received a reply within two hours and an appointment for the next day! It was a good appointment and we were given half an hour. We came away very satisfied.
I do hope it will be a good week for you and Michael. We are living such horrible times.
Love and best wishes.
Sylvia xxxx
0 -
Hello Sue,
I do hope you are feeling better today. I think Gill has given you good advice. All I can add is to say that the chemotherapy will soon be behind you and just to keep looking forward and adjust your day as necessary.
Sending you love and best wishes.
Sylvia xxxx
0 -
Hello Mary,
I do hope that you made it to the nursery and that you got some beautiful plants. I find looking around in the grounds here and watching plants come into bloom cheers me up.
It has been quite a cool wet day here and the time seems to have gone getting through chores and helping my cousin in London to get his television to function again. It is not easy doing it on the phone. It is a good job that Raymond is here and can help him. He was very patient with him.
I do hope you will get your renovations sorted out and that you can have an enjoyable summer.
Thinking of you and sending you love and best wishes.
Sylvia xxxx
0 -
Hello!
Thank you Gill, for the advice. The mouth and lip sores have been unbearable, though as soon as my WBC numbers went up, the sores started to disappear. In the hospital, everyone told me to eat, but it seemed impossible to me. I'd take a spoon full of something and say "I ate." Eventually, I started to force myself to eat a bit more each time. Now I have to work on my stamina.
I'm very lucky that my husband is so understanding and empathetic. I know he gets frustrated in trying to figure out what to feed me. He said he takes anything as a victory. He has been amazingly inventive in creating meals and snacks.
These last few days since leaving the hospital, I've felt very well and have been eating. I want to build up my strength as much as possible. This second round is brutal and I'm nervous about infusion tomorrow.
My oncologist said that if my numbers look good, we can go ahead tomorrow. And I agree that if my numbers are okay, there's really no reason--other than my fear of a recurrence of last week--to keep me from moving ahead. I will get the WBC booster afterward this time, to keep my numbers up. (Last time I didn't because my WBC was okay a week after infusion. But 2 days later, it sank and that's when I got sick.)
I will ask for more monitoring, just to be sure that my numbers remain consistent.
Thank you everyone. I'll let you know how infusion #2 goes.
Love, Sue
0 -
hi Sue
I wanted to tell you that my 1st infusion was much like yours. I had it on a Wednesday and the following Monday I was so weak, dizzy and confused that all I could do was lie on couch, I did make myself get a temperature on myself, it was 103. I called Cancer Center and they told me to go to the Emergency Room. I made it there with the help of a friend and was there in the Hospital for the next 5 days with neutropenia. About 3 days in they started the Neupogen injections and I got better, but with persistent diarrhea for about half a day, perhaps a result of the strong antibiotics they had given me but not sure. My report said at my lowest point my white cell count was .03 on the report.
After that ordeal they cut my drugs to 2 (Adriamycin & Cytoxan), and I was given the Taxotere later by itself. My Onco thought I could handle all 3 drugs together in a high dose but he was wrong on that one. The next infusions I tolerated but it wasn't fun, as you know. But it did come to an end.
Hang in there Sue! Glad you have a supportive husband, try to eat what you can, and ask your doc about magic mouthwash. Mine was formulated in a compounding pharmacy per Dr's orders and it was very soothing and effective. Wish I knew what was in it!
Thinking of you,
Love, Mary
0 -
Hello Sue,
Good luck with your infusion. Hope you don't have any problems this time. The immediate after effects of chemotherapy can be a bit unpredictable, but your medical team seems to be monitoring you properly - very important.
Let us know how you get on.
Love,
Gill X
0 -
Hello Sylvia,
I'm very impressed that you and Raymond have had a face-to-face appointment with your GP. It's been a long time coming. I'm afraid that my GP surgery is just too short-staffed post covid. Noone wants to be a GP any more. Time that doctors want to give to patients now has to be devoted to completing vast amounts of paperwork. People don't go into medicine to spend large chunks if their lives on a computer.
I don't think that we'll ever get our hands on our full Medical files - hospital managers are well aware of the mess they are in. Can you imagine the ensuing chaos?
Our weekend wasn't particularly peaceful either, but we did have some much needed rain. I prefer weekdays over weekends. Days off are a bit meaningless after retirement, weekends are just too noisy and crowded in Norwich.
The Guardian has an article that sparked my interest and hopes at first. It seems that women with breast cancer could be injected with a magnetic marker liquid called Magtrace. This would locate the position of sentinel lymph nodes which, as we know, are often an indicator of a cancer that has progressed. The National Institute for Clinical Excellence has recommended it, but with a need for caution. Firstly, it may stain the skin and more importantly, it may affect patients' ability to have an MRI scan in the future. I don't know what others think, but that's a definite 'no' from me. My own triple negative suptype travels via the bloodstream and moves outside the breast quickly, often bypassing lymph nodes. Any aggressive breast cancer can move quickly, spreading to distant organs before we're aware of any changes. MRI scans are an essential tool, all cancer patients would surely want to keep their options open. I think this is a concerning development and not in the interests of cancer patients, however, the radioactive isotopes and blue dye that we were injected with immediately before surgery, have to be imported. So we have a problem.
That's about all for today.
Wishing you and Raymond a less stressful week ahead.
Love,
Gill xxx
0 -
hi Sue
I wanted to tell you that my 1st infusion was much like yours. I had it on a Wednesday and the following Monday I was so weak, dizzy and confused that all I could do was lie on couch, I did make myself get a temperature on myself, it was 103. I called Cancer Center and they told me to go to the Emergency Room. I made it there with the help of a friend and was there in the Hospital for the next 5 days with neutropenia. About 3 days in they started the Neupogen injections and I got better, but with persistent diarrhea for about half a day, perhaps a result of the strong antibiotics they had given me but not sure. My report said at my lowest point my white cell count was .03 on the report.
After that ordeal they cut my drugs to 2 (Adriamycin & Cytoxan), and I was given the Taxotere later by itself. My Onco thought I could handle all 3 drugs together in a high dose but he was wrong on that one. The next infusions I tolerated but it wasn't fun, as you know. But it did come to an end.
Hang in there Sue! Glad you have a supportive husband, try to eat what you can, and ask your doc about magic mouthwash. Mine was formulated in a compounding pharmacy per Dr's orders and it was very soothing and effective. Wish I knew what was in it!
Thinking of you,
Love, Mary
0 -
hi Gill
Thanks for commiserating about contractors, I think they are as bad as politicians with their promises of speedy arrivals and departures. I have gotten very disillusioned with the whole process.
I'm so sorry you had a bad fall! Sounds awful, I hope your ankle and hand are okay, have you had an xray? Grazed knee will heal, I have had lots of those, and it does make one feel old. Or sometimes it reminds me of being a child with scarred knees. I didn't know you had dizzy spells from chemo, the gift that keeps giving. I'm glad nothing is broken.
I saw in one of your posts you are thinking of having breast reconstruction, is that so? I can understand that, and you have your husband and daughter to care for you while you heal. One large breast would be hard to deal with I think, as you said. I have one small breast, so can go braless without much notice, a real boon in the summertime.
Hope all is healing well,
Love Mary
0 -
hi Sylvia
I notice finally that my chemo info is back, but not your head.
I did go to nursery and came with a car full of flowers. Will they all survive, for a while I hope. Yesterday I planted coreopsis and armeria with other perennials in a bed with blue Salvia and liatris. I always plant with high hopes. I planted a very large pot full of petunias and still have a fern to plant, and a lot of coleus for a shady place. My hosta bed looks very good, and I have one bed with poor soil that always gets invaded by wild phlox and wild violets, they smother things I plant and then die when it gets hot. I can't get rid of them, it seems.
You and Raymond are having a successful week, it sounds like. A prompt doctor appointment is something these days.
How is the Covid situation there? Here "they" say it is getting worse, but I don't think people are getting such bad cases as they did before.
I am off to get the rest of my greenery planted.
Love, Mary
0 -
Hello Mary,
Thank you for your post. It is true about my headless avatar and I am fed up with it. It is about time this forum was sorted out. I just want an S put as my avatar.
I was glad to read you did go to the nursery and came back with lots of flowers. Wild flowers can be a problem and smother other plants. In the grounds here we have to watch out for wild cyclamen and bluebells. Apparently bluebells from Spain have invaded us and are killing off the natural bluebells. I do not know if this is true.
We did have a very good face to face appointment with our doctor. She is very down to earth and knows us pretty well.
You asked about the Covid situation in the UK. I think there is a lot of covering up going on, not only with figures about the number of cases, hospital admittances and new variants, but also with long term side effects. The powers that be are also covering up about problems with all of the vaccines and there are many problems, long term health problems and deaths. I have watched a few interviews on GB News with Mark Steyn during which he talks with the widows and widowers of people who have died from the vaccines. They are being ignored by the government. Raymond and I are not going to have any more of these vaccines. They were pushed out too fast. I do not know whether you are still reading the Chris Woollams newsletter but it is a very interesting one and there is information there about the vaccines under item 6, entitled 17,000 scientists and doctors rise up – back to sensible science on Covid treatment. In fact, all of the items from 1 to 8 are very interesting.
I have found the conversations we have been having together with Sue very interesting. My experience of six months of chemotherapy was very different to the experiences of you and Gill and Sue is also having a difficult time. I was fine and just tired.
Looking back at the drugs we took, they were basically the same. You and I had cyclophosphamide, you had doxorubicin and I had epirubicin but these two belong to the same group of drugs. We both had docetaxel (Taxotere). I had the docetaxel on its own and after the three months with the first two. Sometime later I developed neuropathy in the feet and the oncologist said that it was caused by the docetaxel. The other taxane paclitaxel (Taxol) would probably cause neuropathy as well.
We both had invasive ductal carcinoma (IDC) and of course the same tumour status of triple negative.
Gill, of course, had metaplastic cancer, which is a rare one and with the chemotherapy drugs she had fluorouracil in addition.
It looks as though Sue's details have not been added. She is taking some slightly different drugs and I do not know if we know what her breast cancer is. It would be good if she could put in all the details so that we have it there for reference whenever she posts.
I never had to delay a chemotherapy session and never had any problem with white blood cells.
I suppose one of the differences between us is that I had alternative treatments with the standard cancer ones and continued with oral Iscador for a few years until the consultant treating me thought I could be discharged.
One more word about Covid. I did hear there were two more variants coming from South Africa.
That is about all for now. Keep well and keep safe.
Love.
Sylvia xxxx
0 -
Hello Sue,
I was wondering how you are feeling now.
From your post on May 17th you seemed to be having a difficult time. I do hope you are feeling better and that you have been able to continue your chemotherapy treatment. How much longer do you have to go?
We are all thinking of you here.
Love and best wishes.
Sylvia xxxx
0 -
Hello Gill,
I read your post with interest and I was trying to get up to date this morning. In the middle of dealing with the thread I had a call from the memory clinic about my cousin and I new feel like a break. I shall try to get back later. I am now going to have some lunch and make sure that Raymond gets out for a walk. I tend always to go with him as I do worry about something happening to him when he is on his own.
Our pavements and roads are terrible and it is so easy to trip.
I shall talk to you later.
Love and best wishes.
Sylvia xxxx
0 -
Hello Gill,
I am finally sitting down to reply to your post. We were very pleased with our GP appointment. I can understand why GPs want to leave. Our one is very down to earth and she did tell us that she did not like all this work on the computer and that she was not even allowed to make a paper copy of a prescription any more. As you say, this not what they spent years of training for. Technology has gone too far and I think it is making everything long winded and complicated, and that is when it is not breaking down! Goodness knows what children and the younger generation are turning into when they spend so much time messing around with their smartphones.
I do wonder what is going on in the schools and universities as well.
I do know from friends that have been around hospitals that the staff seem to spend too much time pressing buttons to access files etc. I do wonder what has happened to all of our paper files. I would love to have mine and Raymond's because I am sure they are not accurate. I think they belong to the patient and not the hospital. Goodness knows what is being sent around the country, or the world, about all of us.
I do dislike the way we are being spied on when we use the computer. We have no privacy and I cannot see that we have democracy. All we do is elect new Masters every few years.
I am so angry today that it seems Boris Johnson has not received any more fines. Again, it is one law for us and another for the Masters in charge! Let us hope that there will be more integrity with the Sue Gray report and that it will finish this government off.
I do not like the sound of being injected with a magnetic marker liquid called Magtrace, it sounds more like branding cattle for market or the slaughterhouse. I think we should stay with our usual scans. I had a CT scan before and after treatment and a bone nuclide scan. I have never been asked to have an MRI scan. I had the radioactive isotopes for the nuclide scan but that was when they were getting a diagnosis but I did not have anything like that before I had surgery six months after the chemotherapy journey.
I do hope you will find the time to read the latest edition from Chris Woollams. It is very interesting. The numbers are 1, Need a healthy boost, 2, Natural treatments for colitis, 3, Is this the 1 off-label cancer drug, 4, taking antibiotics for any reason? 5, Brain fog or worse from chemotherapy – off label drug shown in research to help and even cure, 6, 17,000 scientists and doctors rise up. Back to sensible science on Covid treatment. 7, Prostate cancer and testosterone, 8, I am surprised so few people opened this – the natural hormone that can reduce stress, rebalance prostate issues, endometriosis, breast cancer, blood pressure, sleep, thyroid problems, menopause symptoms and more.
Have you been following what is going on with the WHO and a one size fits all worldwide plan for future epidemics. I do not like the sound of it.
That is about all for now. How much do you bet that, the police, having seemingly let the prime Minister off the hook now sends a fine to Keir Starmer?
Thinking of you and sending best wishes.
Sylvia xxxx
0 -
Hi Mary,
I wonder if contractors have always been unreliable, take longer than they promised and cost way more than they originally estimated? Having an older house, every project comes with little surprises along the way - asbestos, woodworm, protected bats in the attic, incomprehensible plumbing, rotten floorboards. We've had the lot over the last few years.
I've been offered breast reconstruction via a DIEP flap or a simple breast implant. I'm only going to consider the latter as DIEP flap surgery takes 7 - 8 hours which is a long time to be on the operating table. Also, several surgeries are often needed. If I decide to go ahead, I'll have a saline implant. With saline at least I'll notice right away if there's a leak as the implant will go flat. Silicone implants can leak slowly over time, which means that silicone could be travelling around your body before you realise. I spoke to my old breast cancer support nurse this afternoon and she told me to just give her a call a few months before I want the surgery. I plan to wait five years from my original diagnosis, so that will take me to August 2023. This will give me plenty of thinking time.
How is your little dog? I guess he's part of the family by now. He certainly won't like his routine disturbed by all the noise and dust from your renovations. One of my cats goes into hiding when workmen call, the other tries to ingratiate herself with them, hoping for treats, jumping into vans and lorries for a sleep or following them up ladders.
Our politics is almost certainly in a worst state than yours. I've never known any Prime Minister to sink as low or destroy so much of our country in so short a time as Boris Johnson and he hasn't finished yet. It's very much 'one rule for us and no rules for them'. Churchill he is not!
Have a peaceful weekend Mary.
Love,
Gill xxx
0 -
Hello Sylvia,
I can't imagine why anyone would want to be injected with a magnetic marker which will impact on the use of MRI scans. If and when there's any suspicion that a cancer may have spread to other organs, MRI scans are routinely used. They're certainly not infallible, but very useful all the same. I'm guessing that there's an import and corresponding cost issue with radioactive isotopes. Could this be another 'brexit benefit' I wonder? I wish I had some information on the use of Magtrace in other parts of the world, Australia, America and the European Union for instance. Will women be offered a choice?
I think most of us guessed that Johnson would get away with the numerous parties he attended at number 10 during lockdown. The Met/Tory Police do not come out of this at all well. I wonder how much his top lawyer's legal bill was? Whatever the cost, you can guarantee that the taxpayer will be called on to pay up - as always. Our corrupt Government is lawless, no social conscience, devoid of any kind of moral compass and with an agenda that has yet to be revealed. I'm deeply concerned that the rights of the police and judiciary are being heavily curtailed and the public is no longer allowed the right to noisy demonstrations. How is a public demonstration ever going to be devoid of noise? When the cost of living crisis worsens, and it will, I think we can expect rioting in major cities across England.
If Durham police do give Keir Starmer a Fixed Penalty Notice, he will keep his word and resign. Johnson may well take this as a good opportunity to announce a General Election.
I have noted the headlines in Chris Woollams' latest newsletter, I shall try to find time this weekend to read through some of the articles. I wonder if Sue might like to know more about the newsletter, it's free after all and you can just read the pieces that interest you most. I do hope that she's recovering well from her last treatment.
Wishing you both a relaxing weekend.
Love,
Gill xxx
0 -
Hi Everyone!
Once again, I thank you for your posts. They are so helpful.
Mary, our experiences seem to be similar. My WBC count was 0.08 in the hospital, before a got a booster. They also gave me a lot of antibiotics which gave me diarrhea. By the time I left the hospital on Friday, I felt much better.
After my infusion on Wednesday, I was very, very tired. Thursday and Friday weren't much different. I'm a bit nauseous, but try to eat what I can. My husband is watching me like a hawk. We'll keep a very close watch on everything--temperature, blood pressure, and if any mouth sores appear. I did get another WBC booster on Thursday.
I have only 2 infusions left for this second round. Then I will be done with chemo. I keep trying to look ahead at the finish line.
I was supposed to meet with the breast surgeon, but was in the hospital. I'll try again over the next few weeks.
Thank you again for your posts. They are so helpful!
Love, Sue
0 -
Hi Sue,
You seem to be a bit brighter than after your last infusion. It helps so much having an understanding husband to help you through the challenges of chemotherapy, I don't think I could have coped without mine. Mary's husband was seriously ill during her treatment and she needed to nurse him at the same time as trying to get through her chemotherapy. The thing about cancer is that it affects the whole family. My children were in their 30s when I was diagnosed, living in different parts of the UK and holding down responsible jobs. I still remember how devastating is was for them. My daughter, a doctor, knew how serious my type of cancer was and broke down several times. I felt guilty at the time, I wanted to protect them, in fact I considered not telling them at first. I expect you are going through this sort of inner conflict currently. Once the chemotherapy and surgery is completed, it's surprising how quickly our children get back to normal. My husband still worries at times and of course I still have dark days when I panic about a possible recurrence. But eventually the bad times fade into the past and life just goes on and it will be the same for you too.
You're very close to the end of the ordeal now, so keep looking forward.
Love,
Gill xxx
0 -
Thanks Gill,
I did consider keeping my diagnosis from my children. But they both live close by and one of my sons works in the same school district where I work. I also felt like I didn't want them to hear the news from someone other than me--they both leave fairly close. I don't see them often, but we talk on the phone. They seem to be going about their lives, which makes me feel better.
I feel a bit different after this second infusion. It's probably because I had the WBC booster. But I still feel a bit nervous because I felt okay until the 9th day after the first infusion (without the booster). My husband is a bit nervous as well. I don't want to be waiting for the shoe to drop, but I'm keeping a close watch.
I'm really trying to keep looking forward. I need to meet with the surgeon to see what plan she'll suggest. And I need to get through the 2 final infusions. They're 3 weeks apart, so the wait seems excruciating! I'll be done by the end of June! That doesn't seem so bad.
I'll be happy to put this in the past!
Love, Sue
0 -
Hello Gill,
Thank you for your latest post. I cannot believe that Boris Johnson appears to be getting off the hook. We start another week and I am wondering whether the Sue Gray report will finally be opened up to the public. It looks as though she was paid a visit by you know who and that is definitely not right. How much has been altered? We need to see the photographs. It would not surprise me, either, that Keir Starmer gets a fine and has to resign. The establishment has always tried to demonise the Labour Party.
There is so much corruption with those running the show that everything seems hopeless. We just go from one thing to the next!
I am sure that Sue would find the Chris Woollams latest newsletter very interesting. Seventeen years ago nearly when I was first diagnosed, the magazine, icon, from Cancer Active, became my guiding light. Everything now seems to be online, but I did like the magazine.
I was glad to see that you had answered Sue. It will not be long before she finishes her chemotherapy treatment and the rest of the journey will not seem so difficult.
Raymond and I have been informed that we can have the second booster, but we have decided we are not going to have it. A friend of mine told me that she and her husband had had it but that it does not get marked on a card that you have had it. Our first three were definitely put on a card and we keep them as proof, so what is going on?
What do you think of the new viral scare of monkey pox? There was an information programme on the BBC at 12:30 today and the rash looked horrible. Apparently this virus comes from West Africa, Nigeria. It is already spreading here in the UK.
That is about all for today. We are getting April showers and somehow I feel rather weary.
I hope you and Michael are well and that you will have a good week.
Lots of love.
Sylvia xxxx
0 -
Hello Sue,
I just wanted to say that your chemotherapy journey is rapidly coming to an end. You will feel very relieved when that happens and find the rest of the cancer journey easier to deal with. I had plenty of check ups at the end of chemotherapy to see how everything was. I was given about three weeks to recover before having surgery.
It would be useful for others viewing if you put in the details of your chemotherapy drugs after where you have put chemotherapy 2/2/2022.
Sending you love and best wishes.
Sylvia xxxx
0 -
Hi Sue,
Yes, I know what you mean about feeling okay after the infusion, but waiting for something to happen all the same. I used to develop a high temperature and start shivering a week after an infusion. Like clockwork. Always happened to me very late at night too and I'd be tempted to leave it until the next morning before calling emergency oncology. Thankfully, I never did leave it. I remember those midnight dashes to hospital very clearly, I live in the countryside and during December many of the hedgerows and trees were festooned with fairy lights. Everything looked so pretty and unreal. I dreaded reaching the hospital, there was rarely a free bed in isolation and I was often given a trolley in the treatment room for a few hours. I shouldn't really complain as bloods and antibiotics were arranged fairly quickly. Once an isolation room was found, my temperature would be too high for blankets to cover me and the windows were opened to let in the cold air. Thank heavens for antibiotics. The two things I dreaded most was the isolation and continually being told I had to eat and drink when it was the last thing I felt like doing.
The main thing is that I got through it and so will you. There's no doubt at all that these last infusions are the toughest. But just think, in three weeks time you'll be doing your last but one chemo and three weeks later it will all be over. I remember how excited I was to have my final chemo. Surgery is so easy after the chemotherapy roller coaster. Once my main treatment was completed I was given 6 bone strengthening infusions of zoledronic acid, one treatment every 6 months for 3 years. You'll probably be offered the same. Each infusion lasts for just over 30 minutes, so very quick. I had a few bone pains and a headache after the first treatment, but nothing after that. Zoledronic acid doesn't cause nausea or mouth ulcers!
You'll probably feel much happier when you've met your surgeon and have planned the way forward together. Not long to go!
Love,
Gill xxx
0 -
Hello Sylvia,
I think most of the covid boosters are going to be offered in the Autumn. Only those over 75 have been notified in this area. We have no idea about infection rates in the UK, so I understand why both you and Raymond have declined the booster. We are, as always, in the dark as to the facts. I have no idea why vaccination cards are not being marked with the latest booster dose, after all there may be a time when evidence is needed. Those vaccinating do add the booster to our electronic medical records, but we should have some actual physical evidence to keep for ourselves surely. Nothing is ever thought through properly is it?
So, the Prime Minister and his chums offered Sue Gray the advice that her report should be scrapped now that the Downing Street parties were all out in the open! We heard about this yesterday and within hours (probably minutes), yet another incriminating photo is leaked. The BBC is not reporting much that might affect our liar in chief, but ITV and Sky news certainly is. Clearly Johnson and co thought they could isolate and bully Sue Gray into submission. They were wrong. Have you noticed the Tory front benches now saying that 'leaving dos' were to be expected during lockdown and were within the rules? They were parties, in a workplace were alcohol was forbidden under civil service rules and under previous Prime Ministers. Rules? Some students in Norwich were given £10,000 fines for breaking the 'rules' which we understood were emergency covid laws. The Met Police have a great many questions to answer and another Police Force outside the Home Counties should be asking them. The Good Law Project is asking for a full investigation.
Monkey pox does seem to be spreading more quickly than expected, but I don't think we should be worrying just yet. I'm going to do some searching to see what I can find out. The rash is horrible and I wonder if it leaves scars like chickenpox, or has any long term impact on health?
The weather has broken here, we needed the rain, but not the slugs that it brought out in force. I'm just amazed by how many bedding plants they can eat their way through in a single night.
Enjoy your week.
Love,
Gill xxx
0 -
Hello Gill,
Thank you for your latest post.
As fo the vaccines, those in charge do not seem to be pushing them as much as they did. I think this is because there are lots of problems about side effects slowly being revealed. GBNews seems to be the news channel t is concentrating on this the most, especially at 8 pm and 9 pm. There have been quite a few interviews with family members who have had loved ones die and quite soon after the vaccination, and these are not elderly people and were quite fit and healthy. It seems to be a problem with all of the vaccines.
Some people I know here have had the second booster (4th vaccine) and in general have been given Moderna. Even after the 4th vaccine, there is mention of another one coming in October, along with the flu vaccine!
It would not surprise me that a vaccination programme is set up for the monkey pox. This seems to be spreading and getting more and more of a mention. Apparently it not only comes from monkeys, but other animals as well. I did hear someone among the corporate big-wigs at Davos saying how lucrative and profitable the coronavirus has been for business.
As for medical records, vaccination records or not, who knows what going on? Raymond and I have had mixed up records at the hospital and the surgery.
It is shameful what is going on in our government. The Prime Minister should be forced to resign but he has no shame. A rule was mentioned yesterday that MPs who have lied to Parliament will not have to resign. This is called democracy?! The fact that the Tory MPs have not come out in force to get rid of the Prime Minister just shows that their moral code leaves a lot to be desired. They must all all be laughing at the public, not to mention the opposition. It would not surprise me that the police now fine Keir Starmer and he will have to resign because he promised to do so. There will be one law for him and one law for Boris Johnson.
The weather is very pleasant here today, so it means Exmouth will be full.
I do hope that Sue will be alright as she near the end of her chemotherapy journey. I read your post to her so it refreshed my mind on what a difficult time you had.
We are very lucky not to be going through treatment during these difficult times. It will be seventeen years since my diagnosis on June 20th this year. It does seem very long ago. There is definitely a lot more information now but a real problem of getting a diagnosis with the least delay. It must be very frightening for patients.
I do hope that you and Michael will have a pleasant week with plenty of relaxation.
Love and best wishes.
Sylvia xxxx
0 -
Thank you Gill and Sylvia,
I will try again to get all the info into my profile.
I had a rough week last week, but I'm feeling a bit better and trying to build my stamina. This round of chemo is SO different from the first. I've had to readjust and rethink everything.
My oncologist had asked me after infusion 2 to take an iron supplement, which I did. But I got so constipated that I was in a lot of pain and discomfort, therefore not wanting to get out of bed or eat. We finally called him on Tuesday and said I was stopping the iron and working on solving the constipation.
I'll be meeting with my surgeon this week. I was scheduled to meet with her, but was in the hospital, so I had to cancel. They seem to get me in quickly these days.
My experience in the hospital seems different from what you all experience in the UK. When I initially arrived in the ER, I was not in isolation. But once they discovered my status, I got the next isolation room quickly. For the week I was in the hospital, I had an isolated room. Eating, though a concern, seemed like they'd let me have whatever I was willing to eat. They did check, but didn't judge what I was willing to eat. I also had a visit from a nutritionist who supplemented some of my meals, though if I chose not to eat what she supplied, no one chided me.
I feel lucky to have the support and opportunities that I have. I'm looking forward to chemo being finished and surgery being behind me. My body feels so weak and stamina is gone. I'm hopeful to be able to build them up again and get back to work.
Thank you, as always! Your words bolster my strength and positivity.
Love, Sue
0 -
Hi Sue,
I'm not at all surprised that you've given up taking iron supplements. I suffered from anemia from my early twenties until the menopause at fifty. Iron tablets made me both constipated and nauseated. In the end, I coped by taking only one tablet every three days for two weeks every month. Not a perfect solution, but it was doable. As chemotherapy often, but not invariably, causes iron deficiency, some patients are advised to take supplements, though I don't know anyone given this advice here. As you're now so close to the end of treatment and iron supplements are causing you serious problems on top of the usual chemotherapy side effects, iron deficiency may not be of huge importance. Your medical team will soon let you know if there's a major issue. Ultimately, your body, your choice.
You're so close to the end of the most difficult part of treatment. I felt like a complete physical wreck by the stage you're at now and used a wheelchair to get from the car to the chemo unit, as my legs would no longer hold me up. Don't worry about getting your stamina back at this point. It will begin to improve within a few weeks of your final infusion and so will your appetite. I can't believe that I went through all that, it seems like a bad dream now and it'll be just the same for you. We're stronger than we think!
Good luck.
Love,
Gill xxx
0
