Feeling let down by friends
Did/is anyone else struggling to deal with friends and/or your partner who weren't there for you in the way you expected them to be when you were going through treatment? Im having trouble not feeling hurt and so alone in the hardest phase of my life. Im also internalising (not sure if thats the right way to put it) a lot of anger towards these “friends” that it is having a very negative effect on me, but i just cant move past it. Particularly because i know i was there for many of them during their hard times.
Go Forth...and live your life!
Hi Everyone, It has been a LONG time since I have been back online. The past few months have been one hell of a road trip indeed. The months away have been spent, trying to get through numerous rounds of chemotherapy, each one systematically throwing endless side effects that eventually took their toll on my health. I spent a fair bit of the time crawling my way from bed to bathroom with months of diarrhea and having a good cry session at how "crap" my life had become (pun intended). I had several trips to the hospital with chest pains that had the doctors pretty concerned, only to realise my body was rejecting the chemo but I persevered till the end. I THINK the doctors thought telling me "Wow, we didnt think you would survive?" was somehow reassuring - ah that would be a negative! Thinking I would get hopefully some sort of break between chemo and radiation was delusional. 3 weeks after finishing chemo, I was laying on my back, topless getting zapped for 6 long weeks. My skin handled the radiation exceptionally well, until 8 days after the last dose, I woke to horrendous pain, the loss of the use of my left arm and covered in about 400 blisters from mid torso to my neck and around my side. I discovered I was highly allergic to the flamazine cream, which created huge open ulcerated sections and I looked like I had been baking myself in a 3000 degree oven. Thankfully, all is healed and I am back to looking "normal". The energy levels are still low, the metallic taste is gone, I can no longer look at a Pork Chop without throwing up and ice blocks are still my favourite go to food! I still need the odd afternoon nap, however one good thing has occurred - I have lost over 11 kilos and feel happier. I must admit, the visit to the Oncologist to begin the next step in life - "what tablet shall I swallow each day?" brought some very interesting information that had previously been unspoken by the medical team. It is amazing when a new doctor takes over from the old one and inadvertently informs you some facts that had been kept VERY quiet, in fact I think the C.I.A. would have been impressed by the secrecy....it has made me wonder whether the rather blase comment of "Go forth and live your life" uttered by the Radiation Oncologist was a standard routine comment, so they can sign you off the books? When the word "IS" is uttered and not "was" when talking about my BC, made my eyebrows raise. Anyway, while I wrap my head around the sheer fact that I have surprised my medical team by actually surviving - no, I am not joking! They seemed to take great joy in telling me that over and over. I am trying to get my life back into some sort of actual semblance of activities that dont evolve around the word "Cancer". Slightly hysterical in actuality considering that has been the number one bloody owner occupier of my life for the past 12 months! By the way - Letrozole (Femara) seems to be the chosen tablet for the next 7 years of my life. I have been researching the side effects and I seriously hope and pray, my body along with its constant companion LUPUS, doesn't resort to throwing every single one of them at me! I am to be honest, dreading it. If you have managed to get this far......I have a question - has ANYONE REFUSED to take the medication and if so, how has it affected you?? I am asking merely to give myself various options so when i see the Oncologist - I go armed with information and not merely accepting their word as gospel. I have learnt over this past year, as much as I wanted to hide my head - I cant and couldn't. I needed to know what I was up against and also in some cases have serious discussions as to alternatives with the Medical team.... just so i could survive. So for the next few months, while I do the routine scans, tests, bone density, teeth check and wait to see the Oncologist again - I am looking forward to welcoming my third grandchild into the world (our first grand-daughter), see my beloved friend get married to the Love of her life and spend time swimming before the cold once again hits us. Life is sweet....hectic but sweet. I can now enjoy simply being LOIS once again.... Big hugs and thank you for reading this! Lois
Family are not being respectful of my wishes
Dear all, I have invasive BC. I had surgery in May and I am currently having chemo. When I was diagnosed after much thought I decided to only tell my immediate family and a few very close friends. I choose carefully and selected people who i thought would support me. When I told people i had BC I expressly advised each of them that I did not want to have my breast cancer known to anyone else. I wanted my privacy. I wanted time to deal with my emotions. Well my parents (in their 80s and in good health) have told distant relatives. I find out because I was messaged and called on the phone. Shock to say the least and totally unprepared. I was a annoyed with my parents but explained again I wanted my BC private. Again my parents have kept broadcasting my health to others including random retirement village people in their retirement village. I then hear a message from a male cousin i only ever see at funerals that they know of my condition. Of course it was a nice message but hey I won't hear or see them until another family funeral. I challenge my mother and she says I told her to tell all relatives, a complete and utter lie. She says i must have forgotten but my husband knows I was very clear. Our relationship has deteriorated. They just don't respect my wishes. In fact they tell me I am overreacting and there is nothing wrong with telling people. They now suggest i am 'not well'. They are gaslighting here. What do I do? I had asked for space and said I would get in touch when I was able to (The intention was to create some space from them) however my mother can't respect that and haS called twice. Neither call had been good and she continues to gaslight telling me telling me I forgot whst I told her. I am stressed about it. I didn't want a bad relationship with them during this time. There is s long history of not respecting my boundaries. Yes i can forgive but I don't know if I want to see them. I can't trust them. If they contact me and they will i plan to just say everything is fine and no further details. I am not sure if I should cut them out of my journey but at the moment I feel like it given their betrayal.
Almost
2011 Sister diagnosed with and treated for a malignant sarcoma on her leg. 2012 Sister-in-law diagnosed with incurable brain cancer. 2013 Sister diagnosed with and treated for Stage 3 BC. 2014 Sister's BC returns, metastasised to lungs and liver. 2015 Sister-in-law dies. 2016 Father treated for aggressive prostate cancer. Sister dies. 2017 I'm diagnosed with BC. 2018 Chemo, double mastectomy and reconstruction. Eight years of cancer and death. I just wanted to get through this year without anyone being diagnosed with, treated for, or dying from cancer. 2010 was the last time this happened. I've thought about it every couple of weeks all year, and more frequently as we got closer to the end of the year. We almost made it. Two and a half weeks to go. The finish line was in sight. Two years to the day that my husband went round to my parents' house to tell them I had BC, on the day I had my re-excision for margins, my father tells me that his prostate cancer has metastasised to his lungs. Two years to the hour. It is staggering. Not that his cancer's back, but that for the ninth year in a row, we are here yet again. Prognosis is uncertain at this stage, the spots are tiny, yet to be biopsied and could possibly be held indefinitely at bay with hormone supression. But chemo could also be on the cards, as of course is his death. He's 83 and in very good nick, but I am SO angry, and so defeated. It's not the tragedy of dying of cancer at 47, but after everything we've been through in the last decade it's a cruel, cruel blow. We're not telling the children now, and we may never, but if it comes to it, how on earth am I going to do it? The youngest two, my sister's kids, lived all their lives with my parents until they came to live with me. They are deeply traumatised, there are ongoing psychological and behavioural issues that are monstrously hard and hugely stressful to handle. Progress is slow and fractional. Some weeks ago I told my psychologist that while I was making huge efforts to get myself onto an even keel, and making efforts towards leading a life that was bearable, hope was not something I had. She maintained that hope was human being's superpower, and that she was going to continue to try to get me to hope again. Bitterly this demonstrates why I am right. If I dare to hope, if glimmers of hope spring uncalled for from my subconscious, than my reality slaps them back down again. Thank goodness I didn't let hope back into my life. Thank goodness I stopped it when I started to feel it. Thank goodness I caught it and suppressed it. Because how I feel now would be worse, so much worse. If I'd received this news in a state of hopefulness... instead I feel grimly prepared for the horror to come. It's really hard to see the point anymore. Almost. We almost made it.
Friends
Evening lovelies, I have been having a hard time lately with being empathetic with my friends and family over, what seems to me, such trivial problems. I understand everything is relative to whats going on in everyone’s world but I feel that this is causing a rift in between mine and my family and friends relationships and I’m feeling a little lost and frustrated... am I being completely selfish or is what I feeling at least a little bit normal!? In addition to this I constantly checking in and asking about their lives and i get the full run down but when it comes to me I feel I can’t really tell them what’s going on as they just don’t understand x
Complications from chemo
Hi everyone. I have barely been on here for some time now, OK....a long time, and for that I apologise. Whilst I was beginning my breast cancer journey from basically 2016 (aged 59)- I was also a full time carer to my 91 yr old Mother. It's all been pretty full on. Mum took the news of my breast cancer badly. It was almost like one minute she could walk etc - and then she went downhill convinced I was dying because the oncologist and surgeon decided I should have a prophylactic mastectomy on the 2nd breast to head off further cancer. 2018 was pretty horrid after that. She is now the first person in our family that has had dementia and one form of her dementia was she rubbed her feet (in agitation) whilst in bed. She developed bedsores on the side of one foot and this is what killed her. In between all this, I began chemo Jan 2016 and within the first week I began to go numb in my toes, had a heart attack on the 2nd dose, chronic diarrhea that continues to this day, had to have all my teeth extracted (Karma because I was so proud of my white perfect teeth hahahaha) I developed lymphedema in my right arm and side of my body. That required a few weeks of having full body massages daily ( 5days a week) and my arm bandaged tightly) To this day, I have to do something like 20 to 30 massages a day to keep the swelling down an wear a compression garment 24 hrs a day, 7 days a week. Within the first week I also started numbness in my feet from the toes up. This is my BIGGEST problem, and I am praying that others have suffered from this and can help. Has anyone else had this numbness that creeps up their legs?? I am now finding that I fall over constantly and that my left leg almost feels like it doesn't belong to me or is there. It's so embarrassing falling over when I go out. I saw an endocrinologist last week and she feels that I must go on utterly massive doses of Vit D - and it is because my very low levels of Vitamin D since I started chemo are the reason this is happening. Has ANYONE gone through this and beat it??? Because right now I wish to God the cancer had taken me. I've been a full time carer to my mother for nearly 14 years - yet now when I need help - I am told I have to out and find work. I'm at the stage I give up. Barb from Brisbane
Another box ticked.
So, another box can be ticked off, this morning I attended the Year 12 Graduation of my grand-daughter, I was with her on her first day of school and today I was with her on her last day of school, When I was diagnosed 5 and a half years ago with metastatic breast cancer, there were several goals I had in mind and this was one of them, to sit there and see her walk(a bit slowly because of her accident) and receive her Year 12 Certificate is one of the proudest moments of my life, she has received an exemption on the last of her assignments due to her accident two weeks ago,to see this beautiful confident young woman and know that soon she will start the next part of her life was a joy,(I am a bit biased) - and so life goes on. wendy55Family Drama
I just want to say I have had an absolutely shit day because of my family. Not the one I live with, but the one I was born into. I won't bore you with the details, but I've been incredibly upset, and my stress levels, already high, are now through the roof. What do other people do when they have family dramas mid-treatment? I know that it is hard to get out of your own head when you are dealing with BC. Since I had the call back letter from BreastScreen it has been virtually impossible for me to think of anything else. But I have tried, especially with my family. I have plastered smiles on my face, I have tried not to worry them. I'm trying so hard to keep everything going. We are told to de-stress our lives to protect and improve our health. But what if the stress is from the people who supposedly love you, but who choose to either obstruct you, deliberately refuse to help, or actively attack you (for petty reasons while they are on holiday on the other side of the world I might add) while you are recovering from chemotherapy and preparing to lose your breasts?? I don't know how to untangle this knot. I don't think I've put this very well, but I hope you get my conundrum. Does anyone have any words of wisdom for me? How do I cope with family drama while having treatment for breast cancer?
My brain finally gave me a break for Easter
Hi all, So I am 17 months on from Dday and 8 months on from chemo and rads. Breast cancer thoughts swim around my head daily, sometimes constantly, sometimes only a few times a day. But it's always there, lurking in the background, interrupting my life and disrupting my thoughts at the most inopportune moments. It gets worse the longer I take tamoxifen. I am normally pretty good at packing shitty horrible things in a box in my head called "Keep the hell out of here". This seems to be a little harder and taking a little longer than normal for me though. However, I am very please to say I just had the most awesome Easter long weekend. We had an extended family holiday planned, and with my new "Say yes to every invitation" motto off we went to Yamba. I baled off the Tamoxifen in preparation two weeks ago. Naughty. What a beautiful place. We went out on the boat, fished, swam in the rock pools, drank (probably way too much). I have not laughed so much in so long. It wasn't until we were driving home that I realized the "B/C bitch had stayed out of the way for a while.. Woohoo. Now, how to keep it gone??????? More holidays me thinks.
