Breast Cancer Now Forum

Hello Mystery Mouse, Just sent you another PM with other info regarding Product Licence numbers amongst other things.  Teva Brand is in stock but if it is not in the Pharmacy's usual wholesaler supply then they won't usually order it in as a Special unless it is on the prescription as it will cost the Pharmacy and they can not reclaim the additional cost from the NHS.  It just can depend on the Wholesalers that a specific Pharmacy uses. Take Care Chick ... View more

Hello again, Yes, I will let you know if I have any luck. Take care, Chick ... View more

Hello MysteryMouse, I have Teva stated on my prescription.  It does not help at the moment though as no supplies it would seem of this brand.  I have had a script in at Boots for over 6 weeks waiting.  Fortunately, I have managed to amass a few months stocks, planned for such times and because I usually have to wait a while to get (GPs fortunately not paying attention to my reorders over time!).  I have contacted Teva twice. Last times they said supplies would be available at the end of June.  Still waiting. I may ring again soon.   Perhaps ring around some different chemists and see if they are holding any stocks.  I rang another Boots but unfortunately they only had a partial box. If the worse comes to the worse, I will just have to try another brand.  However, I have been taking the Teva one for nearly 3 years now and would rather stick with what I know. Hope you find some soon or obtain a suitable alternative, Take care, Chick  ... View more

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