Breast Cancer Now Forum

Phone your GP ASAP. You need some help with oral thrush. I would also change toothpaste to tee tree as well as taking a teaspoon of high grade Manuka honey daily. Ann x ... View more

I’m thrilled for you. Such excellent news, and I know it will give others a real boost. Thank you for sharing. Wishing you a happy and fulfilled life. Ann x 💐 ... View more

You are in the right place for support as everyone here knows what you are going through. Yes, it’s a massive shock. Yes, the treatments are harsh. Yes, life is on hold for the moment. Have you stopped to think of the alternative? Medical research is such that we are privileged to receive outstanding treatments and care from our medical teams which enable us to survive this disease and continue to lead happy and fulfilling lives. I was diagnosed 4 years ago at the age of 70 with ER+, HR- B C.  I had a lumpectomy and full LN removal, followed by chemo and rads. Unfortunately 4 mets were discovered in my lungs, which don’t affect me at all….so far!  I was then on Letrozole and Palbociclib.Im not saying the journey was easy, but it’s doable . I’ve just had a week with my family doing wild and wonderful things and enjoying my four grandchildren. When they left I went and did my aqua aerobics….which I certainly wasn’t into pre diagnosis. Reach out for help to the various organisations such as Cancer Research, Marie Curie, Penny Brohn, Maggies centres. There are a wealth of mechanisms out there to help you on your way, journaling and mindfulness amongst them. From experience I would say not to Google . The info is out of date, and is frightening. Rely on CR for excellent advice. Best wishes. Ann. X ... View more

Aw, bless you. You are in the right place for support and advice. All the members here have been in the same position as yourself and know just how  you feel. As Shi said, the helpline here is fantastic, and you couldn’t do better than to ring them. Marie Curie and Macmillan are also good sources of support. I reached out to my local Maggies Centre in Newcastle and accessed a huge range of emotional and practical support to get me through my treatments and beyond. Places like this have seen every type of issue and problem. Take one day at a time, and hold on to the fact that research now means we are living with, not dying from, cancer. Best wishes. Ann x ... View more

I’ve recently come off Palbo as my quality of life was naff. Letrozole is keeping my lung mets stable. On the combo since October 2017 until last month. Best wishes. Ann x ... View more

Hi Buster, I know exactly how you feel. We should get matching tee shirts! Two months ago I was crippled by pain. Convinced it had spread to bones and liver. I was taking paracetamol and codeine like sweeties! 😳 I even wrote good bye letters…awful. My Onco arranged scans within a week of us speaking and I had a bone scan, soft tissue scan and mammogram all in that week. Nightmare going to hospital every other day. I met him  a week later to be told all scans were clear. Couldn’t believe it , so he showed me the results on the screen. I do have some arthritis and some degeneration of joints, but I’m 74. The pain is gradually improving, but is worse at night, especially if I’ve had a hectic day. My headaches, I think, we’re caused by stress and have now gone. 😁 yay! I wrote a note to self…..keep calm and carry on! 🤣 Hope your results are the same. 🤞 🙏 💐 ... View more

Liz, you don’t ….push yourself, that is. Your body has been filled with toxins and it does take a while to recover from that. In addition, you have suffered emotional trauma which can also affect you physically. Your BC nurse or Oncologist should have explained to you the possible long term impact of your treatment. There are some great booklets available on fatigue and caring for yourself post treatment which I was given at my hospital. Perhaps they are available on line…I think Macmillan produce them. You are right to try to build up your energy levels, but be kind to yourself. Don’t expect to return swiftly to the pre diagnosis you. Split tasks up so they are achievable , even if they take longer. You will have some satisfaction from completing tasks whilst not exhausting yourself. Fatigue is tiredness with big girl pants!! Just horrible. From experience I would also say to still reach out for practical support until your energy levels get better. I was advised to keep taking short walks every day to build strength and stamina, and to focus on what I can do NOW, rather than what I used to be able to do. No good looking back, just keep going forward . Congratulations on finishing your chemo and good luck for a bright future. Ann 💐 ... View more

Oooh, get onto them. That is a new build and is impressive. My friend pops in there. He has prostate cancer. The manageress spent some time at our Maggies during her training and I liked her very much. X ... View more

Hi, my main source of support is the SBC group at Maggies in Newcastle. We meet monthly again, but during the lockdown we formed a zoom group so we could see each other. The manager at Maggies is also our lead nurse. I’ve accessed such a lot of help from them. X ... View more

Hi Kat, i suspect  Palbo is the culprit, it was with me. It took a year to get my dosage and rest period correct and then I motored on happily for three years. Unfortunately , like yourself, my neuts began to drop monthly until my Onco decided it was no longer safe for me to continue. Palbociclib is a bit of a belts ‘n’ braces med and works with Letrozole, which is your real performance hormone blocker. I know it is quite worrying, but your MDT will keep you safe, and there are plenty of other meds available for you if needed. The neutrophil question is asked frequently of our senior Onco at our support group meeting and he always says that there is little he knows that encourages or improves them, which is a bummer! Just one of those things, but eating healthily can only be a good thing. Best wishes. Ann x ... View more

Mermaid, I really fell about laughing with this one! I had 30 sessions 4 years ago, and specifically asked if it was ok to see my grandchildren ….thinking of my immune system, not glow- in- the-dark radioactivity…..and the answer was yes. Think your employer needs educating. Fatigue was my enemy by the end. Best wishes. Ann x ... View more

Hi Justine, what a scary time for you. However, you are not alone in this type of situation. So…big deep breaths and one day at a time. You say you have had breast cancer 25 years ago. Well, how things have moved on. So many options for treatments, so much research to help us live longer. These days cancer is not the fatal disease it once was and many people on here, including myself, are living with cancer, not dying from it. I guess this has brought back memories which are not great, but just remind yourself how strong you were the first time, and I’m sure if you’ve done it once you will be able to do it again. I think you need to reach out for support. I attend a local Maggies Centre which has been marvellous. I’ve accesses emotional and physical support from them. There are other cancer charities offering similar support, including this website. Phone the nurses here. You will get plenty of practical advice and support. In the meantime, be good to yourself. Try distractions like coffee with friends, walks, if you can, in a beauty spot to lift the spirits. Your GP might also be a good place to start for help. Your  medical team , of course, will do everything in their power to help you. After all, your success is their success. Best wishes. Ann x  ... View more

Hi Claire, I’m no nurse but I think a lot depends on how your body reacts to the chemo, and what type of chemo. Personally I think this is a question for your Onco. During my chemo I avoided all chemicals, including those in shampoo and other beauty products. This was on the advice of my BC nurse  who thought better safe than sorry. I was on FEC, which is very harsh . You don’t say wether you are having rads, but if you are then I would be very wary. My skin became so sensitive that I treated it very delicately indeed. Chlorine does dry the skin. Why not post on the nurses section? They are brilliant with info and help. Ann x ... View more

Exactly! Your body, your life! Ask for a face to face. Change your Onco. Change your hospital. It’s your right to have the best treatment .  I know we’ve had people from Yorkshire and Cumbria attend the Freeman in Newcastle. It’s a centre of excellence for Cancer. My thoughts are with you. Good luck. Ann x ... View more

Hi Poppy, where I’m being treated I’ve never heard anyone use the term cancer free! The new terminology appears to be NED ( no evidence of disease) as there is always a chance that cancer will return. In some cases of BC the % can be quite high. If you are happy to wait for him to explain then that’s ok. All sounds a bit fluffy to me though. Sit him down and sort him out next time you speak to him. You aren’t stupid, you’ve been through a lot , and in my opinion a bit of plain speaking wouldn’t be amiss! Ann x ... View more

Hi Poppy, congratulations on getting through all the treatments successfully. A huge journey and a huge effort from yourself. I haven’t experienced the type of bruising you’re talking about but since my diagnosis my mantra is...if in doubt, shout out. Just get checked out by your GP. It could be nothing at all, or related to meds you are taking. Best to be safe though. Good luck. Ann x ... View more

Hi Jo, you’ve got a lot on your plate at the moment so no wonder you’re feeling overwhelmed. I’m ER+ with mets in both lungs. I live in Newcastle and my hospital is a cancer treatment centre of excellence , so very blessed and confident I am receiving excellent treatment. I have never been shy about expressing my needs, so I have accessed many courses on both emotional and physical health at my local Maggies Centre. Macmillan also deliver support. I don’t know if you have thought of reaching out to professionals for help? Your GP would be a starting point. Lots of GP practices have a Marie Curie nurse available. My husband has been very supportive, but he does tend to cotton wool me, so I find attending TaiChi. Swimming , aqua aerobics and dance class at my local gym gives me some space as well as fun. Cancer doesn’t like exercise, so that’s another reason for being active! TaiChi has meditation as well as pain relief, so I just love that. I do appreciate how alone you feel at the moment and hope you can find the courage to reach out and connect to organisations who will help you. Best wishes. Ann x ... View more

Hi Sim, I use two books. One is the Royal Marsden Cook book and the other is the Maggies Cook book. Both are excellent, but the RM contains a wealth of info on the different cancers and combating side effects . The Maggies book is simpler, I found, but being soft back it is now a little battered! Both have great recipes and were excellent during treatments helping in so many ways. I bought mine as a combo on Amazon for £20 but the rrp is that each, so a good buy. On advice from my Onco I stayed away from any books promising healing through diet, or anything extreme. He did advise a varied, Mediterranean style diet, so I’ve upped my grain and vegetable intake. I’m also extremely choosy about protein, now preferring to use organic, outdoor reared, or Atlantic wild, wherever possible .I found, unfortunately, that sugar now exacerbates my night sweats so I’ve cut down on cakes, and that’s a big sacrifice. 😢 . Good luck, and happy cooking 🥰 ... View more

Unfortunately Lou, you are not alone. I suspect you have had numerous viewings of your post with people agreeing with you. I’m four years down the line and still having disturbed nights. Some are better than others, and at the moment I’m managing 7 hours, which is good for me. I’ve tried lots of interventions which have helped me along at different times,   including massage, acupressure. I do a warm bath and lavender oil to help me relax. I only read paperbacks one hour before sleep. I never let myself become over tired as that is the absolute pits! My legs jump about all night. During this lockdown I have found it extremely difficult to get into anything resembling a good sleep pattern, so have turned to my true and tested journaling. I write my anxieties down....which mostly consist of wondering how tomorrow will be, can I manage, what will I be able to do, how fatigued will I be, when will I ever see my family.......you get the picture! This has worked very well, so far. I’ve also recently had help from the Marie Curie SafeFit trial which is about getting healthier. Better nutrition , I think, is helping me sleep longer. By giving me activities to do I now have a routine of exercises to help my lymphodaema and an achievable walk. I think being more in control is the key here, and the realisation that if I can’t do what I want, then that’s ok too. I’m using a Fitbit but relaxation app in bed just before I go to sleep, too. Her voice makes me doze off! Don’t know what she’s saying....don’t care! I’ve rambled on a bit here, Lou, in my effort to help, as without good sleep you can’t function, can you? I think try one or two and move on if they don’t work. Spring and being outside will be good for us all. Best wishes. Ann x ... View more

I was given a leaflet by my clinic with about a  gazillion exercises on it! Instead I took up swimming which helped a lot.....until lockdown. I have recently been accepted on the Marie Curie SafeFit course and have a personal tutor who is working with me on reducing my lymphodaema with a series of 5 gentle exercises. They are actually on the exercise sheets given, but just having to do 5 is so much more manageable. I do 5 head turns left and right, 5 chin drops, 5 shoulder rolls..forward and back, 5 Barbara Windsors... arms out breast out, 5 sky reaches. Check them out on your leaflet for the correct way to do them. Do not stress your muscles. After that I do a 5 minute walk and have been told to swing my arms to help the fluid drain as well. I have a compression sleeve which helps.....a lot, otherwise it is very achy. Mine was caused 2 years ago by enthusiastic gardening. I think it more than likely yours is due to lifting, as you mentioned. Life’s a bug**r isn’t it? Hope you get sorted. Best wishes. Ann x ... View more