Breast Cancer Now Forum

Thank you for this. We already did, she wanted to see if the diarrhoea disappeared w loperamide and codeine, as my daughter is already with a reduction of 50%. When did yours stopped?  Thank you, Sandra ... View more

UAUAUAUU CONGRATULATIONS TO ALL OF YOU! OK, Implausible, oh champion my champion! You did it! And, honey, you look so lovely in that photo, I just wanted to hug you and say how happy I am for you! Congrats, a thousand bells ringing! Nettienoo, I do not know if it is my pre-menopause, if it is the tiredness, bu I am 'shizzling' all the time, especially with TV that smug faces there. Regarding the hair, it is normal to have that 'fuzz' and falls down again. In a couple of weeks it will start a new growth, you will see. Debi2, welcome, things are tough, but as you can see by this really brave bunch, there is a silver lining out there. MBJ, you look so lovely! How are you doing? great trousers and sandals! Trixielady.... what can I say, my love... you know that Veronica could only cope with 3 and still is as been unable to walk straight, her intestines, stomach, blood pressure, kidneys, heart, brain... it's all shot, really. I have been talking directly with researchers from labs and universities, and, honey, it all boils down to luck, there is still no explanation or justification for what comes out in the future. I really want to meet you as soon as you feel up to it, we could meet up at Vennels cafe in the city centre, it is sheltered and have a nice assortment of coffees and teas, message me when you want. Sonia28, my feelings regarding BC is beyond up yours I hate it, I hate it so much! Susie B, how are you? Edinbird, I know how you are, my love, we have been speaking on Linked In, I am so keeping my fingers crossed you will feel better soon! Seaside, what are the next steps? Rosina, and how are you doing? And for everyone else, what will be your next steps after this nightmare? LOVE YOU ALL! ... View more

The beautiful Miner's Hall in Durham  Miner's Hall Inside Miner's Hall ... View more

Bloody hell! You girls are really struggling and being attacked from everywhere! Good grief! I will comment the best I can, just had a quick read, but... by Jove, you are really fighting the good fight! Sorry for being away, it is not because I don't miss you or think about you all everyday, but I was just dumb-mumbling for a few days I collapsed! Bam! I have never recovered completely, I had an entire year with a kidney leaking pus and ongoing sepsis, and in the end I was really frail, plus daughter breast cancer, plus financial issues, plus struggling to do everything on my own... something had to give up. V is still in a very poor shape, started with Letrozole, because it is the best option for lobular breast cancer and she will start rads soon. She already has her tatoos but her hair is coming out! EdinbEdinbird ... View more

Hey, my lovely girls, sorry, been away, just wanted to leave an update before reading what has been going on. I just..... went down a few days ago. I have been ill, sick and tired of what is happening, always afraid of can happen to my daughter, terrified of being so helpless, and then something else happened. I should have a work placement as part of my MA and I started a project for the Durham Heritage site with a supervisor, but a few days ago I received an email from her saying that she could no longer supervise me. This is highly unusual, and, according to the course director, the 1st time that happened, so I started to pull some strings. To give you an idea, Durham is ruled by the university, the cathedral and the council, and they are all linked between. There are no jobs outside this triumvirate and things go around them. A couple of years ago I tried to join the cathedral, but after many things going wrong and after applying for some jobs there, unsuccessfully, I was told in my face that 'my type' was not welcome there and that I should seek somewhere else. for those that do not know, I was not born British, I was born in Portugal and moved to the UK many, many years ago, and I still speak with an accent. That is 'my type', not welcome to Durham cathedral to be part of it. I was a very naive person, and decided to make a formal complaint to the dean, which passed it to another person that said that I cancelled several appointments without saying anything, and when I demanded a proof of this, they just never replied. After that, my grades at my department, which is connected to the Anglican Church and cathedral, were always very low, I was ignored all the time and completely removed from any worked placement at any church, was not considered for ministry and every thing I applied to was denied and not considered, up to the point that my dissertation supervisor disappeared without an explanation and I was left doing a dissertation in and out of the hospital with sepsis and no supervision. I finished my degree under these dark circumstances, but I never managed to get a job with the church, the university or the council. When I tried to approach people to ascertain what was going on, they basically did not give feedback and I ended like an outcast in Durham. When I signed the papers for my work placement I did not know it was linked to the cathedral, so when they received them and saw it was me... well, they forbidden the supervision and work placement and I was out! So, I had a conversation out of record with some people. I cannot prove anything, but I will be completely blocked because the 3 institutions work together and my name is black-listed. I volunteer a lot, I am quite involved with the community... but I am the foreigner who dared to make a complaint because was discriminated and that was a first in my life after living in so many places and countries. I never had an issue in my life related to discrimination, I never even knew that this could happen, but as long as I am in Durham, I will not get a job or have an opportunity to build up a life here. After all we have been through this was too much, I simply do not know, I feel that I am so alone in a country that I thought it was mine, the only one where I know how to live and I would never expect something like this would happen. I see my daughter trying to recover from this awful nightmare and we are trapped in this place due to miserable people, where I am being denied the most basic of rights, the right to have a job. Girls, I have to be alive for my daughter, but it seems that my life ended, I am trying my best to keep swimming, but I do not have friends, I do not have a job, my savings are gone and it looks so dark and hopeless, and at the same time, my daughter just has me and she is so frail (as you all know very well, you are all feeling the same). We all need a little help from above.... OK, going to read everything. ... View more

@Implausible wrote: Daisydi - congrats!!!  Another chemo bites the dust 🙂 🙂 🙂   Sandra.....  I remember you saying before that the main thing getting in your way for funding/help is that you are registered as a student.  Maybe I am over simplifying (I'm sure I am) but surely now is the time to de-register and defer your studies to a future date when everything is more settled?  There are more important things at stake here.... you can always come back to your studies later?  What am I missing? If I cancel my student registration the council will demand £2,000 in council tax that we do not have to pay as students and the bank will demand the immediate payment of my £2,000 overdraft from a student account that immediately reverts to a normal bank account. Plus, it would still have to pay what I owe to the university 😞 It was just unfortunate 1 year sepsis+loss of kidney+cancer+redundancy= big trouble ... View more

Hi everyone, here am I complaining and you are all going through the mill! Oh my God! OK, trying to reply to everyone, sorry if I am forgetting someone, I have not been sleeping for a long time and I am beaten! Rosina, I do no qualify for Universal Credit because I am registered as a full time student, and thus, cannot be registered anywhere else, including as a carer. And I am really sorry about you went through, things like that happening have no excuse and it is quite worrying! Implausible and Jencat, I have been speaking with Macmillan, but they say that there is nothing they can do, they have pushed me for the Citizens Advice that tried to give me a list for homeless people and foodbank, and pushed me back to Macmillan, who cannot do anything. Church is a no-no. You see, I was working for Methodists, but I am Anglican and my church is nearby, but since I have changed parish three times for the past 5 years, there is no deep connection with anyone, plus, this is an impoverished area with more pensioners than pigeons, and the Methodists cannot even look at me after what they have done. Edinbird, Sonia, Stargazer, Netienoo, Susie, Implausible, Rosina.... I kept looking to the screen, you are going through hell! But isn't there any relief, anywhere? Curse! I have just check the websites for crowdfunding, but yes, they work when you have a huge list of contacts, which I do not have, so, no more ideas. Who knew that I would have such difficulty finding a job anywhere! ... View more

In need of help, please?   Hi all, taking stock of my situation yesterday I realised that since this ordeal started, loss of job which was my life saving, I ended up with no money to help V or to face our daily expenses, so I had to dig into the money to pay for my university fees. Short story, I have used the £2,500 for this and if I do not manage to get it and pay those 'lovely people' that turned down my request for help, they will send bailiffs and make a lot of trouble, and I cannot let V knows about all this. I saw that people sometimes use crowdfunding for these situations, but I have no idea how to do it, especially because my social media life is tiny (I don't even have Facebook) and my Linked In and Twitter account just has a few contacts. Does any of you have any experience in crowdfunding? or how to start this? ... View more

@Rosina wrote: Rosina, Veronica really wants to speak with you about all things Classic, her major problem is the attacks with aura that she has and blurred vision that prevents her to jump on the bandwagon and start a 'proper conversation' as she says! But she is really looking forward to it!   Implausible, Veronica says that she wish she was there to give you some comfort, and to all other 'sisters' that are being through this misery. And, Edinbird, she says that she is still keen on moving to Edinburgh, and she will look forward to have coffee with you one day! Ocean21, you have the garden that I always wanted. Did you plant it all yourself or some came with the house? Keep moving, my dears, we are all closer to the door! ... View more

@pastasmissus wrote: Finished radio this morning :-)))) Just zoladex and exemestane for the next 5 years.... actually that's going OK so far, get hot spells but no sweating so easy to cope with. No SE from exemestane so far CONGRATS pastasmissus! All clear ahead, now! ... View more

Implausible/Sarah, she needs a turn around, she will feel better, it was to much, cancer/mastectomy/my own illness/unemployment/financial issues... I keep telling her that she is my hero, nobody can cope with all of this at the same time!   So glad you are better, I am sure that it will keep like this. ... View more

@Implausible wrote: You will all be delighted to hear that I have now showered and changed!  My household have taken the pegs off their noses 🙂 Although don't ever let me go to prison as I dropped the soap about 20 times!!!   Sandra.....  is it time for a visit to the GP to get V some medication for her anxiety/depression??  It sounds to me like she could do with a little help there, and it seems that a few of our ladies on the forum have found that little extra medical nudge to be helpful.....   As I kind of touched on earlier, I am lucky really that I tend to be able to keep- if not upbeat - fairly chill most of the time when it comes to mental state/moods.   I occasionally feel a bit fed up when I am under the weather , like today.  But never for long and never too negatively.   My mantra for the bad bits is "come on Sarah, rest up and wait it out".... and that seems to be enough to keep me in fairly good spirits.   It must be absolutely unbearable to have not only the physical symptoms to deal with but also strong moods/anxieties/ depression.  If it happened to me I'd like to think that I would be asking the GP to throw everything they can at that just as they would a physical symptom.    Please reassure her at least that she is not alone and we are all rooting for her.  And hopefully the further she gets from her last chemo, the better she will start to feel x   Marlyn.... apparently I don't have to be tattooed for the rads, so the lady on the phone said.  But I have no idea why not.  Surely everyone has to?  I guess I will find out more when I get there!  Am hoping they can fit me in the day after my next T dose before the steroids wear off and the side effects hit me....     @Implausible wrote: You will all be delighted to hear that I have now showered and changed!  My household have taken the pegs off their noses 🙂 Although don't ever let me go to prison as I dropped the soap about 20 times!!!   Sandra.....  is it time for a visit to the GP to get V some medication for her anxiety/depression??  It sounds to me like she could do with a little help there, and it seems that a few of our ladies on the forum have found that little extra medical nudge to be helpful.....   As I kind of touched on earlier, I am lucky really that I tend to be able to keep- if not upbeat - fairly chill most of the time when it comes to mental state/moods.   I occasionally feel a bit fed up when I am under the weather , like today.  But never for long and never too negatively.   My mantra for the bad bits is "come on Sarah, rest up and wait it out".... and that seems to be enough to keep me in fairly good spirits.   It must be absolutely unbearable to have not only the physical symptoms to deal with but also strong moods/anxieties/ depression.  If it happened to me I'd like to think that I would be asking the GP to throw everything they can at that just as they would a physical symptom.    Please reassure her at least that she is not alone and we are all rooting for her.  And hopefully the further she gets from her last chemo, the better she will start to feel x Sarah, medication for anxiety or depression is a no-no for her. We have spoken many times with her neurologist about this, and it have a negative impact in her situation related to her migraines. Brains are really annoying! I think that a therapy using pattern modification would be the best for her, but... she has to want it, and I completely understand when she says that she has enough on her plate for now. Funny, I use the same method you use to surpass situations. I was a depressive person all my life, but my external behaviour is completely different. Nobody would peg me for a person with such nightmarish thoughts 🙂 ... View more

@MBJ wrote: Hi Daisydi I completely understand your worry about recurrence. I think we will all find that nag that seems to only relate to us as individuals. For you it's the number of lymph nodes that's your demon. Mine is stopping the chemotherapy treatment, especially when I read about those that have had big reductions. I worry that these few weeks I have enjoyed when all you girls have been suffering will not last. When I read all of your posts I feel I have not suffered enough to ensure it stays away. All ilogical know but there it is in black and white.  But enough of that I am off to the party.  Will catch up with everyone tomorrow. Xx MBJ, Veronica asked me to tell you that she is feeling exactly how you are feeling, she says that is really the same! ... View more

@Marlyn wrote: Sandra, I really do understand what V is going through...we all do.....my coping mechanism is a dark humour, I'd be constantly crying otherwise....is V down for the LGFG course? I think it would do her the world of good. When does her rads start? Little by little bit by bit things will get a little easier, after all she isn't long out of chemo, we think we're going to bounce back immediately, it's a shock when we don't!  How does she react when you read out our posts? I hope she understands we're all in it together, she isn't alone...not for a moment.....give her a cwtch from me? I'd be more than happy to chat to her ....in her own time.....xxxxx Marlyn, I try as much as possible to read everything and she knows you all, but she keeps saying that she doesn't want to know more because she cannot stand to know that you (and everyone here) is suffering. It really hurts her! It is more than what she has suffered (and still is) from chemo, it is the Damocles' sword because she believes that her lungs have cancer because she has a cough, that it will be back, that life is horrendous, etc. It doesn't help her situation: she loved to be back on studies, but she cannot continue with her PhD because it wasn't her choice and it is horrendous, she doesn't have a job and she is really tied up. My fault, really, I should be in a good position to take her somewhere else, to start in a new environment, to freed her from this dark feeling. She is at home all day with her thoughts, it is not helpful at all. ... View more

@daisydi wrote: No I have not gone vegan but I think mayo is on the naughty list due to raw eggs and I accidentally had some a while back and it made me feel sick (mind you I felt sick most of the time on FEC).  Im so confused with the cheeses too.  I know blue cheese is bad but I thought other soft cheeses were ok and then I read somewhere else to avoid feta, goat and sheeps cheese so I am completely lost.  Just sticking to cheddar and mozzarella for now.  Yes I am still on for Monday and I am so so wary.  They are extending my wbc injections and all my trouble started when I started doing them but maybe also coincided with stopping the steroids too.  Its funny how we all react so differently to things.    Daisy, homemade mayo is not safe because we make it from raw eggs, but all the mayo we buy is safe because the process kills all the bacteria. Soft cheeses and cheese from goat, sheep, etc, are extremely dangerous, not only because of bacteria and fungus spores, but also because they can carry brucelosis (even though we have security measures whilst preparing them, there is still the risk) ... View more

@Edinbird wrote: I’m home! A week of antibiotics although no particular infection found as yet. Just feel tired now.   The weather is lovely that’s the annoying thing but I think I’m better in the cool whilst I’m still worrying about my temperature.   All I want is dates! And news and updates. I wish I knew what was happening to me when. I’m just stuck idling whilst I wait and I’m no good at that. I want a timetable and to be able to plan. Let’s all swap shall we?!   Probably fall asleep for a bit before dinner 😴 Oh honey, things have been really difficult for you! I am so sorry! Please try to rest, it is so important now! ... View more

@Rosina wrote: Hi Daisydi, dose #5 is Thursday 23rd of May ( assuming blood test is ok on Monday). Apologies if I bored people to death re. My eating habits but the worry of developing lymphodema in my right arm  ( I am right handed) keeps me on the straight and narrow and again the biggest risk factor seems to be piling on the pounds. I don’t want to ever have to wear a compression sleeve!!!!     Rosina,you are never boring and we pick up excellent tips for you. We are really worried about the dreadful lymphodema, V tries to be really careful but it is not easy when she is sleeping. Her sleep disorders can cause havoc during the night and she can end up sleeping with her left arm (the one from the mastectomy) under her which is a no-no. I keep waking up and checking on her! ... View more

Hi girls, whenever I blink there is so much to read!! I am trying to keep in check, it looks like a tv series, I keep asking to myself 'who said that?' 'what happened here?' OK, V is still feeling too low, my major concern is her depression, she is a bit on the low side, keeps wanting to speak about what happened during her surgery, everything that went wrong, everything that can go wrong in the future, chemo or no chemo (no guaranties either way), she is extremely afraid. I am trying to tell her that she has now to look forward, try to be positive, but she isn't able to do so. She feels that her life ended (her words) and, as much as I can find the words and the arguments, it never worked with her and it never will. Although we have several ways of seeking support, like Talking Changes, Disability Support or even this org by phone, she doesn't want to speak with anyone, the only person that she wanted to speak was someone from this forum (I was so surprised) but she disguises quite well, nobody can see her reality. Hair related: I had a tip for a very good shampoo that many people are using after chemo, especially those who are or will be using Zolatex and Letrozole, because both cause thinning of the hair. It is Grow Me, I have bought it for Veronica, as he lost all her hair right on the first cycle and we can see something coming out now. I will keep you posted. Now, can you help me dealing with her situation? What do you do to surpass agony and negative thoughts?  How can I help without being stupid? ... View more

Marlyn, she did 3 and her onco said that its toxicity had been too much for her, normally, but extra for someone with her health issues, she was due to have her 4th tomorrow, but I has asked her onco to go through V's case and check what could be done. We had a great and honest conversation and she said that this was a preventative treatment and in V's case, 3 cycles was more than enough! So, moving forward, and yes, 'here' is my home and you all are my great, great friends!  ... View more