Breast Cancer Care Forum

Hi again to all the ladies who came back to me about my 90 year old mum and her breast lumps.   I just wanted to keep you posted on this one.    The Matron got involved somehow on this and despite telling me she would come back to me and let me know their decision re my mum, they called mums care home and discussed the situation with the staff there who then agreed that they would call a meeting with me and mum and the nurse practitioner and one of the nurses at the care home to discuss the problem and see what my mum decided.     There was a long discussion about the rights and wrongs of what was happening and my mum began by saying she would cooperate if that's what they wanted.   However, it transpired that she thought that the biopsy would cure her cancer and when I told her no it wouldn't do that but it could tell them what kind of cancer it was and they may be able to give her a tablet she was quite emphatically not interested in that at all.     Obviously, the reaction I hoped for and to that end had taken a typed letter with me, hidden in my bag until the right time, which I brought out and mum was only too pleased to sign it as she didn't want to go back there to that place for anything.    I have obviously sent that to the Hospital and hopefully that will be an end of it all.    I'd just like to say thanks all for your support and encouragement and your kind comments and hope you all receive the same encouragement yourselves.  Love and hugs to all of you xxx ... View more

Hi everybody, I just wanted to say thanks so much for all your encouragement, support and lovely comments about my mums experience.    I feel that the decision to decline treatment and indeed any more testing is absolutely the right way to go especially having seen the dire effects that have followed the examination, mammogram and scan.   I didn't expect to have to fight this battle so soon after fighting a similar one for my dad just 10 weeks ago before he died but I am determined they will not put her through any more distress.   I gave determined that if I hear any more from the hospital I shall tell them that if they want to discuss it any more they must meet at her care home with my mum, myself, one of them and a trusted carer to hear my mum say she doesn't want to go any further.   I'm sure I will only have to ask if she wants to go back to that place that she will decline and if they decline to come to her home they will have to do without seeing her because I'm not taking her back there.    Thanks again for all your support and I hope you all manage to complete your treatments, kick cancers butt and live your lives to the full again soon xxxxxx ... View more

Hi Chaffinch17,  I hope this info encourages and helps you.     I really struggled with FEC 3 and I said to my daughter quite emphatically that I felt I could not go on, I wanted to stop.   Being her mothers daughter bless her, she decided not to argue or cajole me but I instead said OK, that's fine it's over, we'll tell your oncologist, don't worry any more just rest.   I knew as she walked out of the room that I would go on because I wanted to give myself the best chance of survival and she knew that's how I would feel so she said just the right thing at the right time.   FEC 4 wasn't bad, by number 5 I knew there was only one more and that buoyed me up but number 6 was the hardest, it took me two weeks to get out of bed and if they had said just do one more I think I would have decked them with every ounce of strength I had, but having said that I felt so proud that I had achieved the 6 and I knew I had done what I needed to do.   In short, yes, Chemo is hard and there are times when you feel you can't go on but the finish line is bliss and you have done your very best, you should be proud of yourself at that time because you have kicked the butt of cancer.   I found it helped me to try and build in to the cycle things to do as treats when I was able to get out and about and have set days when nobody was allowed to talk about cancer but talk about more pleasant subjects and plan things to do after the treatment was over.      Sorry if I've rambled on a bit but I hope find some of it useful, and I wish you all the best with the rest of your treatment and your BC journey, love and hugs to you all.      Btw, I haven't heard any more from the hospital about my mum bug the carers have told me that since her experience at the breast clinic her Parkinsons has really advanced and she is struggling to even stand up, all this while she is grieving the loss of my dad in September, her husband of 70 years, my heart aches for her.  ... View more

Thanks Ruth07, I would appreciate any advice on this. I so want to spare my mum any further stress especially as it would achieve very little or no benefit for her xx ... View more

Well said RoadRunner, first do no harm is a mantra they should be sticking with. I'm hoping it turns out well in the end and they decide to leave mum with the bit of dignity she has left. Hope all goes well for you too x ... View more

Hi Optimiissy64, I have not been invited to the best interests meeting so I guess I don't get the chance to say any more than I could say on the phone to the BC nurse when she phoned me. I'm assuming they asked me to sign because mum wouldn't speak to them and just kept looking at me but that's a good question. The other thing that crossed my mind today is if they went ahead and did the biopsy and it was Her 2 positive as mine was (highly likely I would have thought given the genes) then what because the only treatment for that is infusions or it could be triple negative, again no pills for that so is there any point in doing the biopsy. I hope it gets resolved quickly and I hope they don't try and bypass me in this decision making process because mum is so very vulnerable and I promised my dad before he passed away in September 2017 that I would care for my mum. If they override me now I would feel that I had let them both down. xx ... View more

My mums lumps in both breasts were discovered by a carer when mum was getting showered, we have no idea how long they've been there but judging by the size it would seem, some considerable time but she is a very private person and detests getting undressed or washed. It just all seems too much too late bearing in mind her dementia and Parkinsons too. There was a young student nurse following us at the hospital all the time we were there and she heard me telling mum all the time that it was her choice what happened to her and she saw how terrified my mum was so hopefully she will speak up on our behalf, thanks for your reply, hope your route through BC is as smooth as can be xx ... View more

Thanks Sue C, I'm guessing that since mum refused to speak up at the time but has since told her carers that she's relieved it's over and she doesn't have to go back that she agrees with my decision but she won't voice her wants/not wants. The hospital isn't happy with my decision although I've heard no more from them yet so I'm still hoping common sense prevails, thanks for your reply xx ... View more

Hi Ali49, and thanks for your reply.    I do have Power of Attorney along with my brother who is firmly of the same mind as me on this subject.   However, what we have is Enduring Power of Attorney, which is the forerunner of Lasting Power of Attorney so it doesn't give us the automatic right to decide on medical issues.  That being said, my mum just gets so afraid and so confused she just doesn't answer at all which is no help but quite understandable.  This is why I was speaking for her and I totally agree she needs dignity and respect and for them to understand that even a simple thing like getting a shower is traumatic enough for her now.    I appreciate very much your thoughts on this as I wondered if I was being too negative about the situation and wanted to know what others thought, thanks very much.   I hope all goes as well as it can for you and you are soon putting BC behind you xxx ... View more

Hi, sorry to crash in on your thread but I had a similar route through BC to you in 2013.   Lumpectomy, 6 FEC, 15 rads and 18 Herceptin all finished Feb 2015.      My first mammogram was 1 year after surgery organised by the breast clinic.   I was still tender physically and emotionally and found waiting for the results agony!     I still have bloating that I acquired during Herceptin but my onc says it's nothing to worry about, apart from that and dry skin I'm back on track. Hope all goes well for you, hugs to everybody on the journey.    ... View more

Hi again girls, thanks for all your posts. We all need all the support and emcouragement we can get. Just one thing I wanted to add is, did you all know that in many areas cancer patients can get free complimentary therapy? You might not like the idea or see the benefits of it but believe me it can help you relax and you meet other people going through the same tunnel as you so you can support one another. I'm in East Northants and here it comes under the heading of ICT, integrated cancer therapies. If you google it you will find it local to you, try it out. You can have reflexology, Indian head massage, acupuncture, back massage etc etc. and a nice cuppa with a chat. Happy hunting and hugs to all xxx ... View more

Hi girls. I hope you don't mind me commenting on your thread. You all sound like you're giving each other good support as indeed I experienced when I went through all the same things 2 years ago. My surgery was July 5th 2013, in some ways feels like ages ago and in other ways feels really recent. Some things will always take your brain back there, maybe a song or a smell or a taste or a place. All this will make you stronger. It is very overwhelming at the start, so much info to take in as well as dealing with all the emotional side of things. But you will get through it all, it's hard but it's doable. The best thing I can say is take each day as it comes and do what you can that day and worry about tomorrow when it comes. Try not to look ahead but look back and see how far you have got through your journey already, it will make you feel more confident that you can cope. Rely on your family and friends, don't shut them out or shield them from knowing how you feel and what you're going though - after all, how would you feel if they did that to you? You need their support. I remember thinking how hard the surgery would be - it wasn't that hard at all. Chemo - well, yes, it's hard but you can build things into your regime to look forward to as well and before you know it you will be at number 6. Compared with chemo, radiotherapy is a doddle, tiring because it's daily but only for 15 sessions in my case, it is soon done. Then I had Herceptin for a year, 18 doses, which is not difficult but it does seem a bit endless. But it's done and I'm still here, actually on holiday in France as we speak, so it's mission accomplished. Sorry if I've gone on a bit but I just wanted to offer some encouragement. I had a really long chat with a lovely lady who had recently gone through it when I started my treatment and it was the single most useful thing I did, her help was invaluable and helped me to cope so much better. I heard about a quote by Eleanor Roosevelt, "Women are like teabags, you never know how strong they are until they get into hot water". So true. Take care and hugs to all going through this journey xx ... View more

Hi and goodbye to all my Maisie friends. It looks like we've come to the end of the road for our thread, I would just like to say thanks for all the support which has been invaluable over the last year, enjoy your good life everybody and hugs to you all. Now where's my brain .................... xxx ... View more

Hi kerelene. Found your comment on the forum tonight and just thought I would add my two pennorth to it. I had 6 FEC which I finished in December 2013, hurrah. I was very sick with the first cycle and so I was given Emend which stopped that dead in its tracks, wasn't sick at all for the other 5 cycles, so that may be worth a try for you, ask your oncologist for it. Also I only had the 2mg dexamethasone all the way through, it was taken orally, but it kept me awake and restless too and after I finished it it took a few days to wind down again. The metaclopramide didn't work for me at all and I was given cyclizine instead which did much better for me. I agree, there are so many options available its mind boggling but you shouldn't have to be throwing up each cycle. Maybe it's a good idea to discuss it all with your chemo nurses? I did put some relaxing music on my phone mp3 so I could listen to it at wakeful times or you could try some audio books so your brain is not whirring too much over all your treatment. Chemo and cancer does play tricks with your head but it will pass quicker than you think. It's just over 12 weeks since I finished the last cycle, I've done radiotherapy and am now on herceptin but I'm definitely getting my life and my hair back. You're doing well, you're half way already and the goal posts are in sight, just keep going and you will soon be through. Hope things improve for you, will be thinking about you and wishing you well, hugs xxx ... View more

Hiya all maisies, I'm back! We had a good weekend, went with my brother and family to Dublin to visit my nephew and his wife. Was brill but oh so tired when we got back, then our house alarm played up all night, rang 5 times spontaneously, nearly ripped it off the wall in the end! Then to cap it all off OH had to have a colonoscopy today, life in the fast lane here! He was told several years ago that he had ulcerative colitis and he's been ok with it until my bc kicked off and the stress kicked in so he went to the gp who organised this exam for him but the good news is there's no colitis, in fact there's nothing wrong at all so maybe it was worth all the unpleasant drinks and cameras to find out. Glad you had a good time in Malta Fran, agree insurance is a nightmare but we found it with Staysure, 2 of us with annual policy for Europe under £200. It's still a lot but some quotes were around £500-600! I need the peace of mind as I'm still on treatment, herceptin, till next February. Sounds like there's been lots going on, chicken pox children, loss of pets, writing groups, holidays - hope you're all managing to cope with all the fallout from your troubles, when your emotions are still battered it takes some coping with all the "normal" stuff as well. How is everybody's hair coming on now? Is it coming back everywhere now? I still have none in the pits area, shame, Lol , but the rest is going great guns, beginning to look just like a short haircut now. Chezz, sorry to hear about your lymphoedema, sounds like the sting in the proverbial tail, what a pain, hope it improves quickly and hope the spots are soon a thing of the past for the boys, at least it's something else out of the way. Ours had it one summer as we were about to go to France on holiday and we were stopped from going on its account, we went a month later as it turned out but still a pain at the time. Rosie, you're struggling with the lymphoedema as well, it's not fair is it when all you want to do is move on. I get pain in my forearm sometimes on the other side to surgery, I'm assuming its where it's been so used and abused by the cannulas, either way it's a reminder of where we've been. Makes you wonder if we'll ever be normal again. I've heard of pagets disease before but never knew what it was, so sorry to hear you have to think about all that as well. Susie, it was good to see you on Tuesday, hope you enjoyed your therapy and mindfulness session. Well done for abandoning the wig, it gets easier day by day. It's about 6 weeks since I wore mine now and I have to say I feel much better about it now and I'm sure the sun and fresh air help your hair grow more. Big bro is coming down tomorrow to take dad to see mum, he gets very emotional about seeing her, feels guilty now because the place she's in isn't as nice as where he is. Its sad but we did try hard to get them to move to a place they could stay together years ago and he would have none of it, insisted they would stay where they were to the end but he couldn't see how things were going to turn out. I have to say it was hard to put the remains of their house in a skip but nobody wants it all so there was little choice in the end although I can't bring myself to tell him thats where it all went. He does seem quite settled in his flat now, he still moans the carers don't do things right for him but I think he would wherever he was so I'm not worried about that. Well girls I've droned on long enough now, I'm going to go and clear up the kitchen after dinner and then chill out again.. Take care all, thinking of you all and sending hugs xxxx ... View more

Hi Lilyboo, how are you today? We had a great time in Dublin, just shattered when we got back though and now our house alarm has started ringing at random times, 5 times last night! Really helpful - not! My treatment is mostly at Kettering but rads were at Northampton, not too far from home for me but travelling to rads every day is still tiring, it's the routine for a few weeks but then it's done. Sounds like you've done really well, not suffered too much with the ses of chemo, hope you can keep going the same with the herceptin, it is easier though you're always looking out for the possibility of the ses from it. My hair is coming back everywhere apart from armpits, no problem there! On my head it's about an inch all over although some bits are longer than others, it's quite thick too so we're getting there, I haven't worn my wig since end of January, feels so much easier once you get your head around it and people get used to seeing it really short. Re the travel insurance, we went with Staysure in the end, they offered the best deal and include lots of conditions as standard. We got annual insurance for both of us to Europe for under £200, a lot but compared to a lot of others, cheap. Must go now, visitors coming soon, have a good day and take care, xxx ... View more

Hi Lilyboo, you had an early start today! It sounds like you have more to get thru than I do but it's getting more condensed for you, getting things fixed on the same days must be easier and cheaper. Do you have far to travel to your hospitals? How have you managed on the chemo? I was really sick on the first round but then went on Emend and was ok after that except the normal lack of energy and stuff like that. Rads is a doddle in comparison, the nurses are lovely there and as long as you realise it will make you tired, mainly because its daily and wearing, and keep on creaming the area concerned you'll be fine. Do you have 15 sessions or more? I was told to cream 2 or 3 times a day but I got in the habit of doing it at each mealtime and at bedtime so never got sore atall, just a little itchy after I finished but keep creaming for a couple of weeks and you should be ok. Aqueous cream was recommended, I got a big tub in tescos and used most of it. My onc said that because my lump was on the left side I couldn't have rads and herceptin at the same time because of the risk to my heart so mines all been a bit prolonged, I was diagnosed in June and had surgery July 5th then started chemo on August 19th, finished Dec 2nd then rads were Jan 6th to 24th, anyway they're done, hurrah. I had my second herceptin on Monday 3rd March, it was better but still on cannulas as my hospital doesn't do the injection form yet, not really sure about injections in the belly anyway as I had them thru chemo, the GCSF ones to boost the neutrophils, and they gave me a hard time, wiped me out as much as the chemo did! Yes overall, herceptin is much easier as long as the echoes etc keep going ok we'll get there. Like you I'm looking forward to this time next year when it's all done although you're having Tamoxifen thats in tablets isn't it? Btw, have you tried to get travel insurance yet? Its a bit of an ouch. Well I'd better make a move, have a few things to do today as we're off to Dublin tomorrow for a couple of days to visit my nephew. Take care, hope your ses aren't too bad this week, sending hugs xxx ... View more