Breast Cancer Care Forum

Hello Jan,  Yes, I agree that it is a very useful article that can  help make sense of some of  the aftermath and coming to terms with it.  It was good to re read it. Thanks for posting the link -  I used it in a recent post to another member (credited to you of course!).   Another piece of writing that resonates with  me is "There's a Mountain Lion In My Fridge" by Caitlin Feeley.  I just find this such a perceptive analogy.  I still laugh at certains bits, like the suggestion of "rubbing kale on it".  There is a copy of it posted by Strawbs in the Coffee Lounge, Hope and Inspiration section of the forum.  https://forum.breastcancernow.org/t5/Hope-and-inspiration/Mountain-Lion/m-p/1030937#M2485 Take care,  Chick 🐥 x   ... View more

Hello Mia/Campaigns Team/BCN, Thank you for the eventual written response. I know you had initial difficulty creating a single post. However, your response is now showing as a number of full as well as broken posts. I have counted 7 at the current time. Jokes about buses aside, just retaining the first full response would be advisable.   Shi has also re-emphasised a very important point. A reminder to all you people at the main office not to overlook the use of the forum and it's members. It would seem that this was overlooked during your amalgamation and that some of you were not aware of it's public nature or how it operates.    As I have stated previously, I do not have secondary breast cancer at the current time but I am very much aware of the future likelihood and it's implications.  I have no issue with the 'hard hitting' nature of the campaign, including deaths from breast cancer. That is factual. As stated to you before, I have an issue with your Campaign name. "Unsurvivor" to me means dead.  Use it to highlight the number of people who have died/that people die from breast cancer.  But if your campaign is also for those living with secondary breast cancer, then for goodness sake change it.    The fact that this title is ambiguous and needs to be explained and justified would indicate it is not fit for purpose in my opinion. The title "breast cancer survivor" that it plays upon, is itself ambiguous and used in a variety of ways. For example, if NED after treatment, a badge to wear after 5 years clear, or from the day of diagnosis until you die (which includes people with SBC!) or even (from your interpretation) one you lose when recurrence strikes.   I wish the campaign itself well and that it respectfully fulfills it's aims.   However, by choosing this name "Unsurvivors", you have ended up alienating the very people you are claiming to support. In my opinion, the collateral damage was unnecessary and unacceptable. Regards,  Chick.  ... View more

Hello Lucy,  How are you doing?  We all have different experiences and it can be difficult making the adjustments to the "new normal" so to speak.  It's a process and not something that can be just flicked into place.   I found it difficult and still do at times. Below is my reply to another recent post about the aftermath:   "New Normal... Still adjusting and still in bereavement for aspects of my Old Normal three years after diagnosis. Not saying you can't get on with things and have the grateful ingratitude of still being here etc but I can not think of one aspect of my life that it has not affected and that I have had to adapt. I don't go round with head in my hands moaning woe is me, but every now and again I do need an emotional release which I consider healthy and dare I say it.... Normal."   A good article to read is "After The Treatment Finishes, Then What?"  by Dr P Harvey.  http://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf It has appeared on this Forum a number of times, most recently seen by me on one of Jaybro's post, so thank you Jan.  As well as being useful for yourself, you may find it useful to give a copy to friends and family who are struggling to understand what you are dealing with.   By the way, in answer to your question, no I am not considering any further recon. I will settle with "Falsy"!  I did have a consultation about trying to do something about how my abdomen still feels after all this time. However, I am considering declining the offer as it means 6 weeks of being careful afterwards and there are no guarantees.  I could not bear ending up it feeling even worse.  Be kind to yourself Lucy,  Chick x 🐥       ... View more

Hello Jan,  Don't thank me just yet as it might not be the right form. I am a bit surprised at Amoena though. I didn't realise you had purchased from them directly on Amazon, I thought it was through another market place seller selling Amoena range.  Bit surprised they did not say you could reclaim the vat where applicable. By the way, I don't think the VAT issue increases Amazon's coffers.  The sellers have to charge it unless a person can claim exemption, in line with UK VAT rules.... I think but I may be talking a load of..... By the way, I totally agree that paying return postage for items is a nuisance. I am quite wary of ordering certain items online for that very reason. Wish me luck as I am trying to argue my way out of paying for a return of an ebay item!!!    Take care,  Chick 🐥 x ... View more

Hello Jaybro,  I have not had to directly reclaim as have usually bought from Asda (sells at VAT free price) , M and S (takes it off at the till without giving my details) or I get my current faves (amoena make) ordered through local hospital for bargain price of £11!!!!   However, on doing a bit of digging, to the best of my knowledge you can download a form from Gov UK site, complete it and send it the relevant company to reclaim your vat.  Here is the link for the relevant form https://www.gov.uk/government/publications/vat-reliefs-for-disabled-people-eligibility-declaration-by-a-disabled-person    Next time, you could send the form to the company with your order or contact them and ask the best way to send.  However, I do think it is a poor do that one has to declare themself chronically sick and disabled to get the VAT of a bra!!  So perhaps you could contact the VAT Helpline for "disabled and older people"  on 03001231073 to check this is the correct exemption form to use for post surgery type bras which I think come under the category of "specialist clothing". Hope you get your money back.  Best wishes,  Chick 🐥 x   ... View more

Hello all,  For what it is worth, I have sent another email to Mia detailing disappointment over Paul's /BCN lack of promised response and respect.    I do not have direct email contact for Paul, otherwise would have obviously sent to him. Regards to all,  Chick 🐥 xx   ... View more

Hello Paul/BCN I agree with Walsh. Don't give a timeline for a response and then overlook it. You could have shown a bit of  respect to the people here by saying why no response was forthcoming. Has it really got BCN in such a pickle that you don't know how to respond or are the people's views on this forum so unimportant that it's ok not to bother meeting a deadline? I really thought after my phone call with Mia, BCN were going to act promptly out of respect for people. Shame on you BCN. Regards,  Chick 🐥 x ... View more

Thank you Paul.  Regards,  Chick ... View more

I am shocked and sad to hear this.  My very best wishes to Mishy's family and friends. Chick x ... View more

Hello all,  Just a quick update. I have just had a long phone call with Mia from BCN. Mia was involved directly in the campaign.  The intention was obviously not to cause upset. There will hopefully be a response today/very soon from Mia/BCN.  Sorry for the short reply but I need to go and catch a bus! Best wishes to all, Chick 🐥 x ... View more

Love and hugs to you as well Walsh.  Try not to let such an oversight bring you down.   I just sent another email to BCN with an example of a post for illustration and  direct links to the two relevant threads you started, so there is no difficulty for BCN staff to locate them.  It would be nice if someone made a public acknowledgement even if just to say they are looking into it.  Anyway, all the best to you Walsh,  Chick 🐥 x     ... View more

Hello Christine,  I can not answer the questions you ask but I just wanted to acknowledge your post.  Hope you are recovering well after your surgery both physically and emotionally.  It can all start to feel a bit relentless as you manage to get over one hurdle and are hit with a few more.   I hope someone replies soon and can share a similar experience.  In my opinion, the questions you are asking are individual and  really best answered by the Oncologist.  Are you due to see them again soon? Can you contact them by phone or can you relay your questions through  a BCN?   If I was in a similar position, I would be asking if there was any way of testing the chest node? Are they planning to do this?   I would hope that they do scan during chemo (if you are having  chemo), and if not then I would like to know the justification for this before accepting any such decision. If they are classing it as "suspicious", then monitoring would seem apt.    I was fortunate to have an Oncology nurse for contact (who I adopted as my BCN!). She would pass on any extra questions to Oncologist. Although I also had a very approachable Oncologist.  Hope you do too.  Best wishes to you,  Chick 🐥 x   ... View more

Hello all,  Just a little update for any interested parties. I sent email to Hannah. Unfortunately she is not available until 11th November. I forwarded email to a colleague, Mia, that Hannah had left contact details for. Mia promptly responded to say she would look into things and also said to ring her if I wanted. I did ring, but unfortunately had missed her so left message on answerphone reiterating main point of email and asking that a representative from BCN could easily respond on the thread. Regards,  Chick x 🐥   ... View more

Hello Adriana,  I have just noticed that you have posted your query twice with no specific subject response to date.  My pathology report did not show lymphovascular invasion (LVI), however I did not want to ignore your post.  I think it can be a bit disconcerting when you do not get a response to this sort of query.    Perhaps it is a query you can discuss with your medical team who obviously have more insight to your individual situation.  I am sure someone will come along soon who has had more direct experience. In the meantime, here is a post from Eileen765 (thank you) on the subject, from an old thread.    "lv I too had lv invasion. I also had lymph node involvment, large 4.5cm tumour. Nobody told me I asked after I had read about it somewhere. I am 8 years down the line now. Also her2. Good luck and try not to worry too much. Eileen".    Regards to you and best wishes for your treatment.  Chick 🐥 x   ... View more

Best wishes for the radiotherapy treatment starting this week Jubelu. Hope you enjoy your massage. Lots of 🤗   Chick 🐥 x ... View more

Hello Dd,  I see you have posted this in a couple of sections with no reply. It may be more beneficial for you to post in the Ask The Nurses section. Also, it would also be advisable to discuss  with your GP/medical team about any off label use and effects. Regards,  Chick 🐥 x ... View more

Hello Sue,  Very eloquently stated. Best Wishes,  Chick1 🐥 x ... View more

Hello Lucy51/Kelly,    Below is a link from the Breast Cancer Now main site specifically about massage which may be of use to you.    https://breastcancernow.org/about-us/news-personal-stories/massage-after-breast-cancer-diagnosis-it-safe   Also I also wanted to echo Di's words of wisdom.  Being kind to yourself is also about accepting that you have been through a trauma and giving yourself the time to come to terms with what you have been through and the effect it has had. Why would you feel embarrassed about the way you feel? Because of the expectations of those around you (who you indicate are "fed up") or is the expectations you have of yourself that you have not managed to get back to "normal" yet and putting yourself underpressure to do so?   From my own perspective, it was about accepting that I could not go back to the past "normal". That cancer, the array of treatments and the aftermath had all left an mark on most aspects of life. I would love to go back to where I was before the nightmare started but I knew it was impossible.  To use a cliché, it was about trying to move on by accepting the "new normal". By the way, my recon was also a fail.    Take care of yourself,  Chick 🐥 x ... View more

Hello all,    The response from HannahM from BCN on the "Is it Just Me" thread also by Walsh, does explain about the campaign in detail. The  campaign itself is a very good thing in my opinion (which is not under dispute) and  is based on the survey responses of people with SBC. I am glad of any campaign that may improve the way forward for people with SBC.  I may not have a duagnosis of SBC at the current time but I am very much aware of the future likelihood.      I thought the campaign was about living with SBC as well as informing that people die from it. I suppose a title like "Secondary Lives" would not be as punchy (even with the intended pun).  Anyway, there is a brief apology from Hannah if the title "The Unsurvivors" has caused upset and that this was not the intention. This was after AnnieJ had negatively commented on the title within that thread.    Anyway for what it is worth, as Hannah has given her email for queries, I have sent email with my views and a request for an explanation of how and why this title was arrived at. I have requested that this be responded to on this thread, as well as suggesting explaining on the main site or even emailing members.  Regards to all,  Chick 🐥 x PS Jill - don't even start me on Brave The Shave.... X     ... View more

Hello again,  Thank you Jubelu.  So glad to hear that you have such a supportive partner.   At night, we don't have the same daily life distractions, so instead may focus on torturing ourselves instead!! I know it may not feel like it now, but you will regain control. Not in the way that we can control the impossible and magically reverse events.  We can start trying to reflect on  how we perceive and respond to these significant changes.     I don't know about you but I feel like I had a mastectomy twice on the same side. Once was bad enough!! Never mind going through the array of treatments and still continuing.   It takes time and processing the changes, which will include being upset about the losses and trying to come to terms with what has happened. I can not think of one aspect of my life that has not been affected by cancer, all the treatments and the aftermath.  It irks me now to think of some med staff going on about getting "back to normal".  There was no going back to my previous "normal".  The challenge was and is to adapt and accept the changes and get on with life from there.     If it is all just becoming a real struggle with no let up, then perhaps you may want to discuss how you are feeling with your GP as well as they may also have resources and suggestions to help you through this difficult time.    All the very best to you and your family,  Chick 🐥 x     ... View more