Breast Cancer Care Forum

Hi Suzie B Thanks for the encouragement. The cardiologist did say it should improve. As you know I have not had very good care here in Wales. I have had no scans if any kind and no follow up at all since the 11th March when I decided to stop chemo. The cardiologist is writing to the oncologist so it will be interesting to see if they even bother to get in touch with me. I am very disappointed in the care all through my chemotherapy nightmare as you know. I have at last been given a face to face meeting with senior managers about my terrible care when I was in hospital. You seem to have been really well looked after  thank goodness. Take care xx ... View more

Hello everyone Sorry I have been off grid for a while it's been hard to get my head around what's happening to me. I saw my cardiologist yesterday he has doubled my medication and if medication does not improve my heart function I think I will need a pacemaker. Hard to believe that one dose of chemo has done so much damage and also probably no use at preventing any cancer comeback. I had lots of blood tests and a chest x-ray yesterday and I have to have a heart MRI. Met some previous work colleagues for lunch today. I nearly did not go as I am fed up of telling people bad news. When I got home neighbours I have never met had left flowers for me with my husband who chats to them. Very thoughtful but upset me to think people think I am so sick. They have moved in to live in a grant amex with their son who is the managing director of Swansea City football team (I don't know him either).  I can see that you are all doing well and moving on with your lives. You have all been so strong and coped remarkably well with all that has been thrown at you.  I went back to my Rock Choir last night which I enjoyed. I have been told to carry on as normal but obviously it's hard when you know your heart is pretty crap. My husband is getting on with the garden and had ten ton of top soil today he was like a 🐖 in 💩. Does not take much to make him happy obviously. Hope you all have a good weekend x ... View more

Hello Everyone I had a telephone conversation with my cardiologist this afternoon. He explained a bit more to me I have an insufficient left ventricle that is only pumping 30% of the blood out into the Atrium. He said it was definitely caused by the chemotherapy. My God thank Goodness I did not have anymore. To think how I have agonised over not carrying on feeling like a coward and a failure. But my body was really not able to take it. Strangely I was talking to the nurse in the Tenovus caravan when I had my bone infusion two weeks ago. She asked me about the chemo and I told her my story. She then asked me who my oncologist was so I told her. You never guess what she said to me oh yes he does like to pump up the doses and give everyone a good wack!!! So God knows how much he gave me, he even weighed me with my boots on.  I hope this does not scare all of you, as you are all doing so well and most of you are through the chemo stage. I really struggled when they told me I needed chemo and almost did not do it. Indeed my specialist nurse (think I have written this before) said to me "Dr James stop reading and let us look after you" well they did a mighty fine job of that. Sorry girls I am just feeling a bit angry tonight and I am sure they were doing what they thought was best for me. Also if I had refused chemo then I would have been acting against medical advice and we all know we need to feel we have done everything we can to survive for our loved ones sake as well as our own. I am seeing the cardiologist in two weeks and started my medication yesterday and have already got the cough that is a side effect. Just call me side effect Marie. ... View more

Hello Girls Thank you for all of your kind thoughts. Yes the consultant (who I have not seen yet) said I could not go on my cruise. Just taken my new medication this morning. I think I am still in shock to be honest. Just when I was beginning to feel my husband and I could have a life I feel devastated that I can't see that anymore. I know I have to find a way to deal with this and I will well I will have to doing have a choice. How many bloody diseases does one woman need! ... View more

Girls I have just had some really bad news my cardiology results came back and I have heart failure, believe it or not I was told this over the phone. I can't go on my cruise on Friday but have to wait two weeks to see the consultant. Have to start on two drugs tomorrow. I just don't know how much bad news one person can get in less than a year and try to pick themselves up and try to have a life. I may as well go and stand on the white line at least that would be quick. Sorry girls but as you can imaging I am devastated but I think still in shock too. ... View more

Hi Sonia28 Just read you are interested in excercise for lymphodema. I found the ones I do on the cancer research website, I also found a dry brushing technique on YouTube which is designed for lymphatic drainage. They were both easy to find. I really think they have helped me as I was having a lot of swelling about two months ago mainly in my reconstructed breast and under my arm. They were even talking about me having a sleeve. Not last time I went though as she was really pleased with my measurements.  I am taking Letrozole I take mine in the morning. I have been on them now almost six months and only now can I feel some joint stiffness mainly in my neck, wrist and hip. Hate any new niggles as I always think the worst! Last day of my heart monitor today. I had an echo on Saturday so not sure if I will get any results later.  Hope you start to get some better sleep soon. X ... View more

Dear Wolvesgirl I am mbj from February 19 thread. I too had neutropenic sepsis on my first round of FEC. Believe me I know how ill you have been feeling and how weak it leaves you. I was in hospital for five days. I had IV antibiotics and oral ones for two weeks after I came home.  From reading your post I saw that you are unsure of whether to carry on with your chemo or not. I made the decision to stop chemo after my first round. I was not very fortunate in my oncologist as he was not particularly helpful. My BC is ER+ so I have been able to start taking the hormone medication Letrozole. I understand you are triple negative so don't have that option. Looking back now to February my advice to you would be to take your time in making a decision and ask lots of questions about the benefits of the chemo to you and what do they plan to do to keep you safe next time.  I am really not sure if I made the right decision, of course now six months later it is harder for me to remember how sick I was. I was and still am angry and disappointed in my body and my bravery that I could not face another round of chemo.  Although we all have BC we are all unique and each one of us is making life changing decisions every day at a time when we are most vulnerable. I hope you have someone who will go to your oncologist with you, so that you can both ask questions and only then can you decide what will be the best way forward for you. I hope you are feeling better and will be going home soon.  Kind regards Marie.  ... View more

Horray so nice to be back! So glad you have had good news Edinbird. You just need to get some good sleep now. As a health visitor if you were a baby I would recommend the pick up put down method 😴. But it probably won't work on you😄. Seriously sleep is something we take for granted until our rhythm is out of sync. Lovely family and holiday photos girls. I had my second Zoledronic bone infusion on Saturday and have felt fine since. Another gig tonight with the Rockies and one tomorrow. Looking forward to hearing everyone's news. X ... View more

Hi Ladies.  Seaside Sa your holiday looks fantastic I am so glad you were well and able to cope with it all. I think I will get one of those Sunflower Lanyards if I am well enough to visit our daughter in Abu Dhabi in November. It seems to have worked well for you.  Implausable I love your posts it's like reading a lovely story, the street art is so clever. Yes I would have cried in Dumbo too. We are going to see an outside viewing of The Greatest Showman in the Botanical gardens of Wales, the Rock Choir are doing a flash mob of This is Me before the start of the film. So should be fun. But weather looks a bit wet 😟. Susie B I have included a photo of us smiling Rockies yesterday on Mumbles Pier.    ... View more

Hi Everyone Well I have been locked out, but now I am back. Not sure what went wrong but technology is a wonderful thing. Edinbird sorry I missed out on wishing you happy birthday. I see your spa day went well. Some ups and downs for you all this week as usual. I have had a hectic week. Monday cardiology clinic to get the batteries changed and the recording downloaded. They forgot about me and I was there for nearly two hours. My name was hidden under a line from the patient before so they told me! I think if I had not asked I would be still there.  Tuesday dentist for checkup and scale and polish. Then later we went to Cardiff airport with my daughter and family as they had too much luggage to get into their hire car as they took all their skiing clothes back for December.  Wednesday bloods in chemotherapy. I had not really thought much about it but I was really emotional coming out, it really reminded me of how bloody sick I have the potential to be. When you have not been there for six months it sort of gets pushed a bit to one side. But I really felt it on Wednesday seeing others there some looking ok others not so good. Today Saturday my appointment for the Zoledronic bone infusion was at 2.45 in the Tenovus mobile unit in the car park of the council offices. We get there at 2.15 in plenty of time. Two nurses are walking down the steps and ask if they can help me. So I told them. One said oh you should have been here at 12.45, so I showed my letter. They did do it for me but the whole unit had been packed up and was ready to leave. Lucky we went early for my appointment or I would have missed it. It could only happen to me. They gave me an appointment for six months with a blood form. You guessed it the date 11/2/19??? even if it was the 11Feb next year that's a Tuesday and the unit is only ever there on a Saturday. The nurse said shall I sort it for you and let you know. Me no thank you I will do it myself. Probably never get seen again otherwise. Tomorrow I am hoping for a more enjoyable day singing with my Rock Choir in Mumbles festival we have two slots 12.30 and 2.30. I really hope the side effects I was told about today keep away as I really want to go. I think I will crawl there if I need to. I hope you are all enjoying the nice weather it's been really hot here today. Hopefully have some pictures of our singing tomorrow. X ... View more

HAPPY BIRTHDAY ROSINA 🎉🎂🍾🎊 Have a nice day. X ... View more

Hi Edinbird I can see from reading the posts that you are struggling a bit at the moment. I also know how you feel about the forums. I have only used this one but if you remember back to when I had my sepsis and made the decision to stop chemotherapy I found it a double edged sword one part of me really wanted and needed the support of all the lovely individuals in our February group to help me get through that dark time. However on the other hand I found it really hard to read about how you were all managing to cope with chemo I know with terrible sideffects but you all still carried on. I felt how can they all do it and I can't, and yes I will always feel I have lessened my chances of disease free survival by opting out of the chemo, and everyone of you has done all you can to maximize your chances. But looking back the benefits of talking to all of you has far out weighed any negatives. But we will always compare ourselves to others whether it's about weight, hair, prettiness or even ability, that's just human nature. But as I think Susie B said we are all individuals who react differently to illness and treatment. At the moment I am doing ok, I always have that worry that it's not going to last. I am trying to live in the moment and not worry about what I can't change (easier said than done I know).  As for the pain it might be the drain site because mine was painful for months after. In fact if I press the area now it's still tender.  I hope you have a reasonable day and begin to feel better soon. XX ... View more

Afternoon Girls Well I am sitting watching the rain pour down   and it's miserable. I am singing tonight with Rock Choir in the local music festival. Lucky it's in the arts theatre not out side but the downside is we are not on until 8.30pm. Also I have a dry cough and a bit of a cold so will be no asset to the singing at all. My daughter and family are going back to Abu Dhabi on Tuesday I hope I will be well enough to go and see them in November. It's almost the end of week two of my heart monitor. I have a different one this week that needs to be clipped to a belt which is a bit of a pain. I hope the results will be ok. I have a wonderful social life next week!! Monday cardiology, Tuesday dentist, Wednesday bloods, Saturday bone watsit infusion.  I am getting a bit impatient with my hair growth too. I think in the beginning it's such a novelty to feel you can go without a wig but now I just want MORE HAIR.  Edinbird you are having a really tough time at the moment, please concentrate your strength on getting better then you can deal with other things later. I know my BC nurse was always looking for cording luckily I never had any. I think they need to snap them by using massage so ask next time you get seen. Everyone else you seem to be getting on with things treatments coming to an end or at least moving on to the next stage.  Have a good weekend I hope the weather is good for you. We will be having our two grandchildren to stay tomorrow before they go back on Tuesday so if it's dry we will be out with the dog and maybe get some ice-cream.  ... View more

Hi Edinbird and Implausible I asked my physio in Lymphoma clinic last week about going in a jacuzzi she told me yes it was fine. Mind you my cardiologist my have other ideas. Week two of the cardiac monitor, fitted with a different one today and it has three leads this time and needs to be attached to a belt. Not great if I want to wear a dress. I have a jacuzzi bath here at home and I have used it since my surgery. But not a great deal as I prefer to shower really.  Going to try to catch my sister in now she was engaged   a minute ago we need to look at shore excursions for the cruise 😃. ... View more

Hi Sonia28 I hope your skin will settle down it sounds really horribly painful. I think the bone infusions and the calcium tablets are two different things. Marilyn is having an oral version of the actual bone infusion so it's not the same as us taking the Calcichew.  I am having the same regime as you 6 monthly infusions plus I take a calcium tablet every day. So don't worry about drinking the water or eating as it's not the same medication. I know it's all confusing as we are all having similar treatments but often there are differences too. Our train day out was really nice and the weather stayed dry in the Shrewsbury flower show until it was almost time to leave. Tired today so have not done much at all. Grandson here staying the night hoping for French toast for his breakfast, but as he is 12 at least it won't be at 6am more like 11am😴. ... View more

Rosina I think I  am going to work my way though all of those colours. Fab. ... View more

Hi Girls here we are on the Northern Belle weather dry so far fingers crossed it stays dry.   ... View more

Dear Edinbird I am so pleased to hear you are back on the ward. It's good they are keeping a watch over you tonight. A room with s balcony sounds really posh I can tell it's not Wales we only have cupboards for wards here 😮. I hope you have a restful night unlikely I know. Don't forget to ask for pain relief if you need it. XX  ... View more

Hi Girls Edinbird I hope all goes well tomorrow for you, I will be thinking of you. Rosina rainbows are so lovely and represent a new beginning. I am coping with my heart monitor ok, just need to wear high neck t shirts.  I hope the weather will be kind on Friday for our Northern Belle train outing, but I seriously doubt it. Shrewsbury flower show in the rain here we come ☔🌷🌹. ... View more

Hi Susie B Left Bundle Branch Block is where there is a blockage in the left ventricle of the heart to do with the electrical impulse that makes our heart beat regularly. So that's probably why I have been having palpitations. May be nothing to worry about but they have to investigate for any possible underlying cause. One thing after another.  ... View more