Calling all triple negative breast cancer patients in the UK
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Hello Viewfinder,
I hadn't realised that your diagnosis was so recent. You must feel shell shocked that your sister's diagnosis followed so quickly.
Yes, side effects, there is no way to measure if a patient will get them, how severe they'll be and so on. Susie has had very few and was able to lead an active normal life throughout. Mary's experience was different. A friend with TNBC suffered badly with neuropathy in her feet right after Taxol, but recovered about 80% of the feeling and no longer has the sensation of having sand in her shoes. Not very helpful I know.
Sylvia and Mary keep up to date with research and I would definitely advise being an informed patient as that way you can ask surgeons and oncologists the right questions. It's empowering to have some control over treatment.
I read your earlier post about many Americans being no longer able to afford health care. Trump seems to be a thoroughly wicked individual. His racism is truly revolting. We have problems in the UK too. Our National health service is deliberately starved of funding and many privatised services are creeping in. These private, for profit services have proved to be disastrous in most cases.
Hope you can find some peace of mind regarding your sister. You seem to be giving her all the support you can. Having your daughter with her during treatment will really help.
Take good care of yourself too.
Gill X
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I had been wondering about our American friends and how their treatment is paid for. I did ask my oncologist how much my treatment had cost the NHS but she looked blank, not really her department. It has to be tens of thousands of pounds, something I shall think about when paying my tax bill in January.
I hate to think of anyone having to cook crystal meth like the man in Breaking Bad to pay his hospital bills.
Susie
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Dear All,
I’m very sorry for the long silence.
I should have at least explained why this was - as I know it’s potentially a bit concerning when people who are active on the forum suddenly drop off.
I think that, after months of high-stress events- my mother’s diagnosis; the endless battles with The System; the many awful side-effects my mother experienced while on the AC; my own cancer scare, I just wanted to have a bit of a break from cancer.
This was not exactly to be as, a few weeks’ ago, my cousin’s 5 month old baby was diagnosed with a malignant brain tumour. This was followed by the mum of a lovely family down the road from us ( with 4 children- 3 boys and 1 girl, similar configuration to our own family) telling me that she had been diagnosed with metastatic breast cancer in her bones( she had been in incredible pain and losing weight for months).
I had a few weeks of feeling really overwhelmed by cancer in general - and very fearful about it.
None of this was helped by awful, awful, gloomy weather and a persistent cold, which kept me from the gym( a very helpful place to me amid all this).
Anyway, I now find myself feeling a bit more rational and able to see a more balanced picture.
My cousin’s baby does need chemotherapy but has an 80-90 percent chance of being cured. The mum down the road has been told there is a lot medicine can do about the pain, and that her type of metastatic breast cancer( hormone positive, her-2 negative) can hopefully be kept at bay for many years.
And, most importantly to me, my mum has tolerated Taxane far better than AC so far. That said, she has been on it for 6 weeks and has only had 3 infusions as her neutrophils keep in dropping to below recommended levels. So that has been frustrating.
Frustrating too is the fact that: not only does she have to pay for the taxane, but she has been told that any hospital treatment needed on the back of the chemo( she was in hospital for so much of the AC experience...) has to be paid for too. She is not allowed to mix and match the NHS and private, despite having no choice about going private for the taxane.
So not entirely straightforward, and she is rather climbing the walls at the prospect of the continually- delayed taxane going on for potentially many more months. BUT she is just feeling so much more “normal” than she was on the AC. She even took all 4 of my children for the day yesterday, no mean feat even when one is not on chemo!! The whole experience lifted her spirits no end!
The sun is out today, and I’m feeling a bit less overwhelmed by everything.
How is everyone here?
Susie must have finished all treatment now?
Gill, sounds as though the FEC hasn’t been without event. But you have managed all 4 cycles? That’s great.
I’m sorry to hear about the plural effusion worrying you. Has this been resolved yet? Can you pay privately for a CT to get an answer?
If it’s any help, my mum friend mentioned above-with recently-diagnosed metastatic breast cancer-had a pleural effusion for months, and was very breathless.Once the doctors hand diagnosed her with cancer, they checked the effusion to see whether that was also cancerous ( rather thinking it might be) and it wasn’t- just a build-up from a recent chest infection. So even people with advanced cancer ( not that you have that) can have innocent effusions. Please try not to leap to the worst conclusions. Easier said than done I know...obviously hoping it is all ok.
Mary, hope you’re well across the pond.
Sylvia, thanks as ever for keeping this thread going, even when people don’t always keep up with it quite as you’d like.
I think the best thing for me to say at the moment is that I will endeavour topop in from time to time, but, at risk of feeling overwhelmed by all things cancer-related, will take breaks sometimes too.
Wishing you all a very happy Christmas if I don’t manage to get onto the thread before next week!
And thank you for all the lovely support my mum and I have received since her diagnosis in June( seems years’ ago now).
Flora and her mum x
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Dear Flora,
So pleased to hear that you and your mum are (reasonably) OK. I did wonder about your mum's chemotherapy and hoped that all the trauma you both had to endure during the AC treatment wasn't being repeated. I think we're all very angry that you've needed to fight every inch of the way for treatment. Very glad that your mum has tolerated Taxane, but how utterly cruel and frustrating the system is.
Yes, cancer has loomed far too large in your life recently. The idea of a baby needing to go through chemotherapy must give us all pause for thought. The prognosis does seem to be positive . So hard for the parents and yourself to have to watch, wait and hope over the coming months though. I do hope that this nightmare is soon over and that this time next year your cousin's baby is running around, making that first visit to Santa and 'helping' to decorate the tree.
I think you're very wise to give cancer a rest for now, you need a long holiday from it and time to inject some fun back into your life.
I had 3 rounds of FEC and found it very hard going. Still in hospital with a high temperature and extremely low white cell count. Have absolutely no regrets though and would do it all again. My pleural effusion has disappeared without trace. I did think the worst, cancer is very good at taking away one's peace of mind, as you know. I fully intend to pull myself together by Spring, when the good weather comes. Too cold and gloomy at the moment.
Wishing you, your mum and those you love, a very peaceful new year and a healthy future.
Love,
Gill X
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Hi, viewfinder
Thanks for setting me straight on the matter of when you had BC. So you had surgery but no chemo or radiation. Did you have the BRCA test or other genetic testing of the tumor?
I am very sorry you lost your husband, and your daughter. I had no children of my own, but know that is the hardest loss, to live beyond your child. I had a brother who died at 21, and saw what that did to my dad. My mom died at 38, and my dad at 68 and another brother died at 60 of a very rare and awful disease.
I am now 66 years old, 61 at time of TNBC diagnosis. I thought I was healthy, and was very shocked at this happening. My husband was also ill, he had been diagnosed with lung disease years before, and it had progressed. Then he developed heart disease, found out in 2011, and then his kidney function started going downhill. I was 34 when we married and didn't have any children, but I do have 3 step-children. He and I did like to travel, we had been over many of the States, and the Caribbean. Since your husband died of lengthy illness, you will understand this, it is painful to watch your partner of many years going in and out of the hospital and at times struggling to breathe. We did manage to take a couple of trips in 2013 but in 2014 he started out January with another hospitalization and I found a lump in my breast. We spent the next year in and out of hospital for him, and myself in treatment for TNBC. He did pass away in February of 2015. As you say, it was almost a relief, because he had no good quality of life left. We were married almost 30 years.
I did not have a specific career, I went to only one year of college. And was the only one in my family who did not have their degree. I was somewhat of a wild child, and just wanted to go and experience life. So I have worked at all kinds of jobs, I have been a singer in bands, and worked in hospitals. I have worked at a ski area, and restaurants and night clubs and plant nurseries. Wherever I was, I would grow restless after a while and pack up and go. That all changed when I got married, and now that I am a widow I find I am enjoying travel again. Only in a more sedate fashion, no more hitch-hiking!
I am also on Medicare with a supplemental policy, and as you know, we still pay for this coverage but at a lesser rate than younger people. I am also part-owner of a business, and know that health-care for employees is a huge part of the budget of any company, as well. Businesses are competing for good employees, and benefit packages must be kept up. I remember before Obamacare went into effect, I asked my General Practitioner how we would manage once that kicked in, he said "Don't get sick." Not helpful. I remember a speech then-President Obama gave, in which he admitted that medical costs for many would necessarily skyrocket. And yet people were surprised when it happened. You are right, the political climate is ugly, the TV media fans the flames of division and does not report the news anymore but only their political views. I have stopped watching them, and get my news elsewhere.
So back to the matter of your sister, it is very individual how people respond to their cancer treatment. Some manage to keep up with normal routine, others do not have the same reaction. Only time will tell, I surely do wish your sis the best and hope she is not bothered by many side effects.
Talk to you again soon, Mary
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Hello everyone,
I was glad to see that you have all been chatting to one another during the weekend. I had to take a break as I have been overwhelmed with work in my role as a director in the complex where I live. I shall catch up as soon as I can.
I was so glad to see you back on the thread, Flora. What a time you have been having.
I shall talk later.
Sylvia xxxx
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Hello, Flora,
What a terrible thing for your cousin. I suppose the only upside is that the baby won't have a clue what's going on, but for a child that young to need chemotherapy is so sad.
Sounds if your mother is now very determined, though, which is heartening. I'm surprised by how few people are being offered Filgrastim to maintain their immune systems. It has to be cheaper than having to hospitalise people with very low blood counts, as well as being better for the patient! A friend who has cervical cancer asked about it, at my suggestion, and the oncologist just said that he wasn't minded to prescribe it, with no further explanation. Then she ended up in hospital on a drip for five days in week three!
Yes, I've finished my treatment now and have my anniversary mammogram coming up at the end of January. It does end.
Susie X
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Hi Mary, You've had a tough life too. I am fascinated by your adventurous nature. Good for you.
Yes it was painful to watch my husband suffer. He had COPD so I often watched him struggling to breath, particularly the last two years before he died.
I've been interested in politics all my life, particularly education. It was interesting campaigning in a very large county. At the time campaigning was county-wide but they eventually changed it to single member district. The county has a total area of 2,383 square miles (6,170 km2), of which 1,970 square miles (5,100 km2) is land and 413 square miles (1,070 km2) (17.3%) is water. But I loved it and had lots of people working for me. The School Board is non-partisan on the surface but there was really lots of partisanship and POLITICS.
Now I can hardly stand reading about the politics in this country. I can't stand the overly partisan politics! When I see what they spend of others besides citizens of our own country, it really makes me livid!
I hope my sister won't suffer to much from the cancer treatments. She has very bad arthritis and a few other medical issues. I just read about Peripheral neuropathy and it's something I hope she doesn't get. I'm probably researching too much. I was so against taking Anastrozole and it's side effects that I told my oncologist that I wasn't going to take it. She convinced me to give it a try. I've been on it for two months and have no side effects to speak of. So all that worry for nothing.
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Hello all,
Still in the Acute Medical Unit, confined to barracks. Temperature 38.8 last night. Antibiotics not working at all and white cell count apparently at 'Rock bottom'. I'm shaking with cold and feverish at the same time.
The on duty Oncologist I saw yesterday is going to ask my Oncologist to prescribe Filgrastim as a matter of course from now on. Wouldn't you have thought that this went without saying after having been through the whole thing just two weeks ago? Last time the antibiotics worked very quickly.
Haven't had a shower since Saturday.
Had orange jelly and ice-cream for supper last night.
Miserable post, I know. I'll be back when there's better news.
In the meantime, I hope the rest of you are fighting fit and looking forward to Christmas.
Love,
Gill X
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Hello Gill,
Good news about the Filgrastim. As you say, this should have been done after your first hospitalisation. Sorry that you're still confined to barracks. Feel better soon.
Susie X
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Hello viewfinder
Thank you for your post on December 16th. I think you have a good philosophy of life in your belief to keep moving forward. It is something that is not easy to do. I have had lots of 'what ifs?' and 'if onlys'.
It is true that life is short. My two older brothers are dead. The eldest died aged 10 and I do not think my parents ever recovered from that. The other brother died aged 57 in 1997 of cancer. He survived only six weeks after diagnosis. I am the middle child and have two younger brothers.
I found it interesting reading about your website and digital photography.
I get the impression that your sister has the personality that will get her through her cancer journey.
I do not think we can really talk about one kind of breast cancer being worse than another. With breast cancer with positive hormones and breast cancer with negative ones, you get the same standard treatment, which is surgery, chemotherapy and radiotherapy. How extensive your treatment is depends on the stage and size of the tumour. With hormonal breast cancer you have five to ten years on anti-hormonal medication, which has nasty side effects. I was always positive about having negative receptors. If you do not need chemotherapy or radiotherapy it makes the journey much easier. I think perhaps the nastiest breast cancer is the ones with triple positive receptors, especially being positive in HER2. A friend of mine here in Exmouth died of that a few years ago. I have others here who were hormonal but negative with HER2 and they had much shorter cancer journeys and had lumpectomies and a bit of radiotherapy, but they still had to go on anti-hormonal medication.
I was interested to know that you had done some teaching as an art teacher.
I do agree with all that you say about politics and politicians.
That is all for now as I have a lot of catching up to do.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for your posts. It was interesting to read some of the details of your life.
I think we could all write novels about our lives.
I was sorry to read that you have been having such a difficult time with your treatment and I do hope you will be back home soon.
It is pouring with rain again here and gale force winds. It is so dark we have the lights on even though it is midday.
Take care.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your post on December 16th. The Brexit debate rages on and I do think Theresa May might get pushed out in the end. She is showing endless contempt for Parliament. There was a debate going on called the meaningful vote. There was supposed to be five days of debate, but after three days Theresa May stopped the debate and ran off on a useless trip to Europe. Parliament wants to resume the debate and then have a vote of no confidence in May's deal, which it seems she will lose, so she has put a veto on it until January 21st. She is acting like a dictator. I am not sure what will happen next but it could be she stops everything and another referendum is called for. That is unbelievable. She keeps changing her mind.
Nigel Farage has left his party but he is still an MEP. He has a phone in programme in the week on LBC and on Sunday mornings. He left his party because he did not like the way it was going.
I do agree with you about Chris Woollams but I do think that the Rainbow Diet is very important as well as having a healthy gut.
That is about all for now as I am very busy.
Love.
Sylvia xxxx
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Hello Flora,
Thank you for your post of December 17th. I can understand that you needed to take a break away from cancer.
I was so sorry to read about your cousin's five month old baby. I do hope all will go well with the treatment. As for your friend I do hope she will get some good care for her metastatic breast cancer to the bones. I have a friend here who had breast cancer, hormonal, which came back after thirteen years and spread to her bones three years ago. She is on anti-hormonals and has been on bisphosphonates for three years and is now having a rest from them. Bisphosphonates can be very nasty and she was told it was not good to take them for more than three years without a break. She is on and off chemotherapy. That is the trouble with metastatic breast cancer. You have to be on something all the time.
I was glad to know that your mum has tolerated the taxane drug better than the AC. I do hope she is getting Neupogen to stop low white blood cells.
I do think it is awful that she is having to pay for her treatment and that patients are not allowed to mix and match the NHS and private.
I really do understand that people need breaks from the thread. It is just good if they tell us they are going to take a break or even move on. It is not good to get consumed by cancer.
I do hope you have a good Christmas. Give your mum my very best wishes.
Love.
Sylvia xxx
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HI, Gill
Still confined to barracks, that's quite a stretch this time. I'm surprised it's so hard to get the Filgrastrim injections. After my first infusion that turned bad, I would get an injection the next day following every infusion till end of treatment. I'm sure it's expensive, but so is having you in the hospital for days on end. On the bright side, you won't have to do all that Christmas prep, just go home and be the lady of the manor! Once the fever subsides of course.
Perhaps they should try different antibiotics? Have you already had the Filgrastim since you've been in the hospital? You should feel better once it kicks in and does its' job. In time to get home, rest up, and make it to the second town Christmas Party on the 28th!
So you had 3 doses over 21 days of FEC, and on December 30 will start 3 doses of Taxol over 21 days. I had ACT (Adriamycin, Cytoxan, Taxotere) together for one dose, it hit me much too hard; after that had AC for 4 more doses, and then 4 of Taxotere, if I remember correctly. And then according to my new onco was still a dose short on the Taxotere. If it's any consolation, perhaps our treatments laid us so low that nothing cancer-related survived either!
I hope the time passes quickly, and you feel better soon, and can escape the hospital.
Talk to you soon, love
Mary
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Hello Susie,
I did read your letter in Vita Magazine and as I was reading it I did think of you as I remembered you mentioned in a past post I think, something about meetup.com and I remember you talking about going to the theatre etc. Since it was signed Susn and you will always be Susie for me, I did not connect it as having been written by you. Congratulations on doing that. Do you have a lot of people in your groups? Do you do anything for Christmas?
Thank you for the big effort you make on the thread.
To all of you who have been busy on the thread these past weeks, Susie, Gill, Mary, viewfinder, and Flora (I hope I have not missed anyone), many thanks.
In the Vita Magazine I was interested in Meet the Authors section and was interested to see that the latest book on breast cancer was mentioned there, The Complete Guide to Breast Cancer: How to Feel Empowered and Take Control by Professor Trisha Greenhalgh and Dr. Liz O'Riordan. This ia as recent as 2018 and both of the women have been through breast cancer. There are a couple of other books mentioned there that you might like to have a look at on Vita online, vita.org.uk. I do recommend this magazine. There are some recipes here under the heading Winter Warmers. I like the look of Winter Vegetable Curry with Raita and Brown Rice. It definitely has the colours of the rainbow!
That is all for now. Love and best wishes to everyone.
Sylvia xxxx
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Hi, Flora
You have been through a lot since we last heard from you, just reading your post is exhausting! I think I missed something, did you have your own cancer scare?
How horrible about your cousins' baby having to go through cancer treatment, the good thing is baby probably won't have much memory of all this, but the parents will. They will probably get some gray hair over it all. I'm so glad the child has a favorable prognosis.
I'm glad your mum is doing better with Taxane drug, except for low neutrophils. As you know, Gill is going through this now, mine got very low too, to the point of not being able to walk. I do know they are expected to lower, but it is a matter of degree. My onco said if you can't make it to the bathroom and spike a fever, it's too low.
I do certainly hope your neighbor down the road can get relief from the pain of metastatic BC that has spread to her bones, and I'm glad she will be able to prolong life and be comfortable. With 4 children she has a lot to live for!
I am fine, I'm in the flurry of Christmas prep, it seems to come up and surprise me every year.
I don't blame you for wanting cancer breaks, glad to talk to you when you are here!
I wish your mom, and you and yours, a very lovely Christmas and then a less stressful New Year!
Talk to you later, love,
Mary
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Hello all,
My white cells are fighting back, however my red cells are now very low and I've been told I need a transfusion. I refused at first and the Oncologist has said I could think about it overnight. If I don't have a transfusion I probably won't be able to continue with the chemotherapy. I know no-one can give advice, but has anyone here had a transfusion? I lived in Portsmouth and had my son at the time they were using contaminated blood and was very nearly a victim. It's a question of trust.
On a lighter note, old fashioned Jam roly-poly for supper, superb. Food has loomed very large in my life these last few days.
Confined to barracks for at least another day.
Hope everyone is enjoying the Christmas spirit, if not the weather.
Gill X
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Sylvia,
You wrote: "To all of you who have been busy on the thread these past weeks, Susie, Gill, Mary, viewfinder, and Flora (I hope I have not missed anyone), many thanks."
Many thanks to you too and your dedication along with others to keep it going during the past 9+ years!
As a newcomer to this thread, I find so much of it interesting and helpful but sometimes, I confess, it's a little hard to keep up because of the variety of topics and the need to go back and sort through previous posts. So forgive me if I miss responding to some one. It's not on purpose. You've all been so welcoming to me.
I'll be slowing down a bit as the holidays approach. May the Blessings and Happiness of the Christmas season be yours. I pray God gives each peace as we travel along this passage called cancer! Because of people like you the path is a lot less lonely! For those of us still struggling, keep up the good fight. You're an inspiration.
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Gill
My husband had to get quite a few blood transfusions, they usually made him feel better. You might as well get it while you are in hospital, because it is a slow process. They have to put it in slowly.
Are you getting whole blood, or are you getting iron, or ferritin? My DIL has to have iron infusions every so often, they do make her feel better.
There is no danger now in getting blood infused, or it is very miniscule risk. They screen all blood now, any suspect blood is not used.
Talk later, Mary
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Hi Mary,
Thank you for your very quick response. The blood scandal happened over 3 decades ago here but only came to light recently after many years of denial. Left a very bitter taste much like the Thalidomide scandal.
I'd assumed it was whole blood, but will have to check tomorrow. I really appreciate the Oncologist giving me overnight to think about it. But from your experience it sounds as though it made your husband and DIL feel better quickly.
Like you, my daughter said the screening process is now very thorough and safe. I think I should go for it and then I can get on with the chemotherapy and be out the other side. There's a risk to everything and as you say, I might as well get it done whilst I'm here.
Love,
Gill
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Hello Gill,
I was so sorry to read that you are now having trouble with your red blood cells and have been told you need a blood transfusion. I have no experience of having blood transfusions but when I was going through chemotherapy I did see some women hooked up to blood bags. I would think you would be alright with a blood transfusion. Have a good night's sleep and you will feel refreshed and ready to do this. You might want to ask your oncologist why you are having so much trouble with low white and red blood cells. You need to make sure you get the Neupogen shots for the white blood cells, but I am not sure what you can do to keep the red blood cells up.
I was very lucky that I never had any problems with white blood cells and I do not think it was being offered in 2005/6.
As for red blood cells, I just made sure I got plenty of iron. I used eat plenty of dried figs and plenty of prunes, as well as taking iron tablets with vitamin C for better absorption. I am not giving this as advice but it worked for me.
It is good to know you are enjoying the food. What are they giving you for main meals?
I am thinking of you and hope you will be back home soon.
I have had a thought and was wondering whether you might need lower doses of your chemotherapy regime to get through it. If you are really not feeling up to par, if that were me, I would delay the chemotherapy and give my body more time to recover.
Sending you love and best wishes.
Sylvia xxxx
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Hello viewfinder,
Many thanks for your kind words.
I was very glad to know that you are finding the thread interesting and helpful. Do not worry if you cannot keep up with all the posts. Just do what you can and catch up as slowly as you feel necessary. Do not make it a chore. I have tried to make it good therapy, informative and relaxing.
The thread will probably slow down a bit as Christmas fast approaches.
Once again thank you for your deep thoughts.
How will you be spending Christmas?
Love.
Sylvia xxxx
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Hello, Gill,
I didn't need blood transfusions for my cancer treatment but had one two years ago after knee replacement surgery. I didn't think twice about it. I'm pretty sure that the days on contaminated blood are long gone.
Looking at the website for Blickling Hall today. Looks like a must-see while I'm in Norfolk. Do you know it?
Susie
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Hello, Sylvia,
Yes, some friends call me Susan and some Susie. I like Susie, as it sounds young and carefree (if only). We have hundreds of Meetup groups in London, of course, so there is something for everyone. I don't belong, for example, to the Black Lesbians Meetup, for two very good reasons. My favourite is a cinema Meetup group at my local arts centre where the regulars have become friends. I also try to get out with the Richmond French Meetup to keep up my French and hopefully stave off dementia for a bit longer. I belong to a theatre Meetup and a couple of groups that do a variety of outings such as museums and galleries. Oh, and I recently joined a fine-dining Meetup. There is always someone interesting to chat to. All ages and many nationalities come.
I don't think there are any Meetups in Exmouth, but Exeter has a few.
I'm off to Norfolk for Christmas with my late husband's brother and his wife. Starting to get excited about it!
Susie
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Silvia, We'll be having a quiet Christmas, with daughter and grandchildren and, possibly, some friends. My sister lives too far away, and my husband's family lives in Sweden and Finland, about 7000 miles away. We make a smorgasbord, but not as extensive as my grandmother and mother made. If you ever tasted things like lutfisk, you'd understand the reluctance of many third and fourth generation Scandinavians to prepare, no less eat it.
Hope you and all others enjoy your Christmas.
Susie, I never heard of the term "Meetup" group but I think I can figure it out.
Last night, I watched The King's Speech for the 7th time. I love the movie and all the psychology behind it and trying to understand the schisms between royalty and the "common man." Whenever I get a chance, I watch movies about the Royal Family. I am forever fascinated by the citizen's devotion to them. And the crowds whenever they speak.
I also watched the documentaries: "The Real King's Speech" and "Whatever Happened to the Windsors? King Edward VIII And Wallis Simpson." Fascinating.
Sorry to digress.
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Hi Viewfinder,
Just wanted to reassure you, as I know how worried you are about the side effects of your sister's treatment next year. The glitches I've experienced are by no means the norm. I've just been unlucky to get everything going. Also, if I needed to, I'd do the whole thing again, so no regrets.
I think people in the UK are less enthusiastic about the Royal Family these days. There's just too many of them. I honestly think the UK needs a stable head of state and the Queen is just that. Voting for a President would be a nightmare, also Presidents would be much more expensive than a Monarch. So, keep the Monarch, the Prince of Wales, his heir and the Princess Royal. That's only my view of course. The rest might like to find a job. Prince Andrew, his two girls and Prince Harry are tiresome to say the least.
Like you, I still find the story of Edward and Wallis fascinating and all a bit sad in the end.
I think you'll feel better once your sister's treatment begins.
Wishing you a peaceful and less stressful New Year.
Gill x
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Hi Susie,
Yep, definitely more carefree than Susan. The staff here call me Gillian!
I think many people wouldn't think twice about a transfusion. I'm going ahead, but still cautious about what lurks unseen in other peoples' blood.
I've visited the gardens at Blickling. The Hall's very expensive, but popular and most people seem to enjoy it. It's one of those things we keep meaning to do.
Visited Cromer after my first chemotherapy. Ate fish and chips from Number One while watching the waves from the pier. Have to tell you the fairground and helter-skelter are closed over winter. However, the Anglican Cathedral is installing a 40 foot helter-skelter in the Nave in 2019. So there you are, come back next year, ride the helter-skelter and view the Cathedral ceiling all in one go. In 2020 the helter-skelter will be replaced by a large Dinosaur from the National History Museum. Go to a service and the Dean may use a bubble machine to add interest to his Sermon. Yes, really. You might well be excited to be holidaying here. All normal for Norfolk.
Gill x
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Hi Gill,
I'm a National Trust member so the more expensive Blckling hall is to get into, the better I like it -- getting my money's worth.
Glad you're going ahead with the transfusion.
Susie x
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Hello Sylvia,
My Oncologist doesn't want me to take supplements, although I don't know if that includes iron. I shall certainly be back on vitamin C and turmeric as soon as my treatment is complete.
I was just very fortunate with the food in the first few days here. I would now say it's absolutely dreadful. I was offered a grey undercooked jacket potato at lunchtime and a very dry sponge pudding. There were other options but these looked to be the safest bet. I'm a fair cook myself and I can't imagine why the NHS is serving this rubbish to human beings.
My blood has not yet been matched. Everything is so slow. My daughter has told me not to accept a transfusion at night, as transfusions must be monitored at 15 minute intervals which never happens at night. I have been moved to a ward used mainly for palliative end of life care. I'd heard a great deal about it from patients at the Hospice. Most patients couldn't wait to get away and found it difficult to comprehend the difference between the two places. Staff all very kind and doing their best under tremendous pressure - as usual.
I'm in a tiny room with a clear glass panel to one side. This gives passing strangers a clear view of me in bed. My room is dark and gloomy and all I can see from my window is a brick wall. This is very close.
Just been told that my blood sample was contaminated by the saline from the flush and my red cells are at actually at 86, still low, but eating well should solve that.
My PICC line is blocked so have to wait for the arrival of the PICC team to sort it out, then I can go home.
I'm seeing my Oncologist on Friday and I doubt if she'll want to begin paclitaxel on December 30th. The on duty Oncologist thought I needed an extra week to recover and I think that would be sensible.
I think that I need to press on at the same dose. Aggressive treatment for an extremely aggressive cancer.
I'll soon be up and about again.
Weather not too bad here again.
Love,
Gill
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