Breast Cancer Care Forum

Yes, it will all come out. I felt quite untidy with clumps dangling and big bald patches so had mine shaved when it just got too much. I thought I didn’t care.....turns out I did. I took my wig in with me so when I came out of the hairdressers i looked great. I found my head hurt when it was falling out so I was pleased to get rid of the pain. X ... View more

Oh dear, what a muddle re Onco, tests and advice. I’m not a medical person, but just want to acknowledge your post and send a hug. I think we’re all in similar boats here. My meds, ct scan and clinic have all been postponed for 12 weeks. I’m hoping everything will be ok, but then what is the alternative? Why don’t you give the nurses here a ring, or post on the nurses section for some advice. X ... View more

No Rosie, no walks! Indoors means just that. What if someone suddenly dashed over to you while you were walking and they were incubating the virus? Stay safe. Exercise in the garden. All my scans and clinics have been cancelled until further notice as it is deemed unsafe for me to visit hospital. Taken off Palbo two weeks ago for the same reason.X ... View more

I was taken off my Palbo 2 weeks ago as taking it would mean I would be unable to fight off Covid 19. All my hospital appointments have been cancelled as well. My letter said that due to the virus hospital was deemed to be unsafe for me as I am in the high risk group. My hospital is a centre of excellence for cancer, and I’m always well looked after. Some of these hospital visits here sound nightmarish! X ... View more

I’m due a ct scan but cancelled as I have( had) a temp and cough. Also due more Palbo which I would normally get at clinic this week. However, my clinic is postponed and I’ve been told to defer taking Palbo until further notice. I was told by my Onco PA that at the moment it would be unwise for me to take Palbo, or to sit around in hospital . Substitute dangerous, I think, for unwise. Feel very wobbly and have spoken to lead SBC who has been very reassuring that all measures are to keep us safe. Also, telephone consultations have now been put in place to minimise contact, and she will be monitoring these in order to provide appropriate support. I think rock and hard place is a very good description. Stay safe, ladies. X ... View more

Paris, I do think you’ve made a wise decision. Just not worth the risk with compromised immune systems. Hopefully you’ll find a lovely romantic cottage that will tick boxes for you and hubby. Make plans for next year. Best wishes. X ... View more

If in doubt why put yourself at risk? I don’t think you’d enjoy it for worrying. One of the ladies in my support group has cancelled her Italian holiday for just that reason. Our lead BC nurse fully endorsed her decision. You just know that we won’t withstand that virus. Im dreading getting on the plane back from Lanzerote in case someone has a cold, never mind corona virus! 😢 😱 It’s a right bugger. X ... View more

Hi Dan, I’ve no experience of this as my secondaries are well controlled. My heart goes out to you in this situation. I’m surprised your GP isn’t more involved with what you’ve said. I would say go to Macmillan. They have advisors there who will complete forms for you and do battle on your behalf. I attend a Maggies Centre and I can tell you the benefits advisor there is like a Rottweiler. Does the forms, sends them in and gets on the phone. Always gets a positive result. You need support as it’s bad enough having this crap disease without battling for your entitlement. Good luck. X ... View more

It’s not only freaking hard, it’s freaking awful! You are allowed to fall apart, and I’m impressed it’s only at night. Your GP can help you with night time wobbles, or you could try herbal I needed quite a lot of support to keep me going and to find my new ‘normal’.........if there is such a thing. I ended up not even liking this person I had become, and really grieved for who I was and what I thought I’d lost. What I’ve come to realise is that I’m a very strong person to have come through this treatment, as you are. And it takes real guts and courage to get up each day and carry on. So, here’s to you, 🍾 🥂 , a strong and determined woman. X ... View more

I started Letrozole in October 2017, and my Onco got me on Palbociclib at the same time as first line treatment. I hadn’t been on anything else so was accepted for treatment. The Palbo strengthens the Letrozole, I’ve been told so you get better results. X ... View more

Hi Mandy, read about your sore mouth, which I know from experience can be awful. I wondered if you’ve ever tried high strength Manuka honey? I was on FEC-T which can be a bit of a nuisance with mouth ulcers, thrush etc but once i used this every day I’ve been great. Been using it for three years now. Only buy it when it’s in the 1p sale otherwise it’s ridiculously expensive. Good luck to you and Lindylou, it sounds a tough treatment. X ... View more

I’m three years in on Palbo and Letrozole and NOT going anywhere. Mets in lungs stable, nothing else anywhere else. 🤞 Occasional blips with high temps when snotty grandchildren breathe on me, but, hey ho, it could be a damn sight worse. Thank god for NHS . Here’s to long and successful treatments for us all. 😘 ... View more

Hi Joe, must get the mirror out and check. Definitely takes longer to orgasm! 😢 Everything feels softer and less muscular, but of course the HT locks down oestrogen  which is our lovely lady hormone, so I wasn’t too surprised. X ... View more

Hi, what a dilemma. For me I would get my medical team to advise on my physical ability, then I would check my own emotional status. As the two are so interlinked I feel you need to be absolutely top notch for both. I am very glad I’m retired from my teaching as no way could I have managed myself and the physical and emotional demands of my students. Stress is not good for cancer patients, so you must bear that in mind. I was told that rads can affect you up to two years after the treatment, and I have found this to be true with some pain and stiffness in my arm pit and boob....what’s left of it! 😯 I think you need to discuss a phased return to ease you in, but also the possibility of reduced hours. Your body, as you know as a nurse, has been through a very traumatic experience and rushing back before you are ready , I feel, is not a good idea. Hope you get sorted. X ... View more

Ah, Wonky, can definitely relate to that. For me I needed help to climb out of the vortex , only to find I was living on shifting sands as I have secondaries! Gotta take each day as it comes. 😘 ... View more

Fluffs, unfortunately GPs are just that, general practitioners. You would be very lucky to have one conversant with current oncology. I would have thought you would still have a BC nurse as your treatment is so recent. At the very least I would phone the hospital and checking it out with them. X ... View more

Meditation, and exercise with meditation is my way. I love TaiChi and could not do without this class. Warm up and relaxation exercises are easy to repeat at home and I find help joint pain. Swimming is another way of shutting out the world and helping my Lymphodaema at the same time. Oh, and manicures with a lovely hand massage to cover up the crappy nails BC treatment has gifted me! 😢 ... View more

Hi Granny, I’ve always tried to be honest and practical with advice. I would always acknowledge any problem and then offer my take on the way forward- if I had experience of the issue. Perhaps from your point you are still suffering, rather than coming out the other end and looking back? The mind is excellent at locking away pain. I am very sad that you had less than stellar service from your rads team. I think the one thing this disease has brought home to me is that you need to be pro active with your treatment. If something doesn’t feel right you need to shout out. I followed posts here at each stage to try and get a feel for what would be ‘normal’, and from that then felt I could start a discussion with each team....surgeon, radiographers and chemo to ensure my treatment was as good as it could be. Yes, my wounds wept, my chemo was less than tolerable and I got second degree burns from the rads, However, each issue was dealt with swiftly and professionally , which does not appear to be your case. Bad enough to have cancer, but to have issues such as yours which seem to have gone unnoticed, or ignored...,well. 😱 Best wishes with any ongoing treatments. X ... View more

Good luck, Lindyloo, with your new treatment. Always a worry  but your medical team will be doing their very very best for you. 🤗   ... View more

Well, I’m pleased about that. Do your exercises and I’m sure things will be much better. X ... View more