I Am Lucy O'Donnell, Author Of "Cancer Is My Teacher" - Ask Me Anything!

Lucy_ODonnellLucy_ODonnell Posts: 15 Cancer Wellness Expert

Lucy O'Donnell Joins us on the 9th of January at 7pm to answer questions from our Community

Leave you Questions Below Now!

When Lucy was diagnosed with Stage 4 metastatic breast cancer in November 2011, she spent most of the next eighteen months in radical cancer treatment. Through her continuing treatment and experience, Lucy channels her energies into helping other people in and outside the cancer world.  She is a Cancer Wellness Advisor, Holistic Therapist and author of Cancer Is My Teacher   - the “go to" book that addresses the physical, practical and emotional sides of living with cancer from the point of diagnosis through to recovery and beyond.

During the last 7 years of living with cancer and continuing treatment Lucy realised how crucial emotional and physical well-being was, in staying well and having undertaken many alternative treatments herself to counteract and enhance her clinical treatments she is now a qualified alternative and holistic therapist (focusing on the healing power of nature) which she combines with her counselling work, and inspirational speaking.

Lucy writes for Psychology Today and  is involved with, and supports many cancer charitable organisations.




Lucy O'Donnell Joins us on the 9th of January at 7pm to answer questions from our Community

Leave you Questions Below Now!



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Comments

  • RobertARobertA Posts: 258 ✭✭✭
    How fantastic to see that Lucy will be available to answer our questions on 9th January. I was diagnosed with an aggressive and incurable stage 4 cancer exactly two years ago today.  I coped with the diagnosis and the subsequent treatments pretty well at first, but a year later, I started to feel disconnected and anxious. The curious thing, was that the worst was over and the cancer was under control so in theory at least, I should have been feeling a lot more optimistic. Not so. I became quite introverted and stopped socialising and communicating, even with my wife and I was eventually diagnosed with depression. Fortunately, we sought help and the wonderful MacMillans provided us both with counselling support and we slowly but surely started to get things together again. 

    I think the reality is that a cancer diagnosis is not the same as the diagnosis of any other type illness. Your mortality is suddenly in your face and your priorities and assessment of what is important can change quite significantly.

    I will be posting my question for Lucy in the next few days. Depression is almost worse than the cancer itself and it is great to know that people like Lucy are out there to help us through it. 

    Rob 


  • LouiseJLouiseJ Posts: 152 mod
    Hi Lucy

    I am really looking forward to tuning in next week to your AMA to hear first-hand from you.
    I must confess I have only been able to read snippets of your book as I didn't have my own copy, but I have now ordered it and look forward to reading it in its entirety.
    The parts I have been able to read though had me feeling like I was looking in a mirror, such was your description of events just prior to your diagnosis. It did make me laugh. I used to describe myself in terms of having one boob turn the corner or walk into a room before the rest of me! =) I had no idea then it was cancer.

    I was fortunate to have the cancer found quite early, even though it had already spread to my lymph nodes. Thankfully it hadn't gone any further and after undergoing chemo, a mastectomy and radiotherapy, I am now free of cancer. 
    I think it is fantastic that even though you are facing a daily fight with cancer, you have turned it on it's head, and are helping so many people through this minefield. I applaud you  <3

    My question is whether you can give any insight or wisdom regarding getting used to life again after cancer and/or treatments have ended? I ask this as I have recently heard so many people saying how much of a struggle they are having coping with living with the side-effects of treatment and meds, worries about returning to work, feeling like the support has gone once the treatment has ended, depression and more. We all have to work through these things, and there is no right or wrong way. I can only speak of how I do it, and my experience, but then I am concerned sometimes of offending others. 

    Thanks so much

    Lou x
  • Dawn_steventonDawn_steventon Posts: 1
    Hello Lucy. 

    Thanks for doing this. It is a great comfort knowing there is light at the end of the tunnel. 

    I have stage 4 leiomyosarcoma- removed from womb, mets in bladder and lungs. I was diagnosed 12 months ago and given 2 years to live. They have now given me 12 months to live. Chemo is no longer helping and I decided to stop all treatment 3 months ago and live the rest of my life instead of being ill in bed for weeks at a time. 

    My question is - what is your take on cannabis oil, manuka honey and other cancer fighting vitamins ? I read these miracle stories about people curing themselves and think there must be something in it ? 

    Many thanks

    dawn 
  • EireEire Posts: 2
    Hello

    I wonder if you could advise please.   My sister is currently undergoing radical chemotherapy for her Breast  Cancer.  The side effects have been horrendous and of late she has been unable to eat any solid foods.  In her words, she has almost become anorexic, but we all know that prior to this terrible thing, she had a normal healthy appetite.  Following her latest visit to the Oncologist, they too have raised concerns over her ongoing weight loss, now classified as being underweight and are worried that if things continue, she may not be fit for surgery, when her chemo has finished.  She has been given Ensure and Complan to take daily, but I wonder if there is anything else I can do to encourage her to eat in order to regain some weight.  Is this a  psychological effect of the chemo and what can I do to help her.  Thank you.
  • AnnelieseAnneliese Posts: 1
    March 2017 I was diagnosed with non-small lung cancer 1B.  I had surgery to remove the upper two right lobes of my lung in May 2017.  I did not require chemotherapy or radiation.  There is no cancer in my family;  I've never smoked. I am lucky.  However, since the surgery I have had a "lump" in my chest where the two lobes once were.  At times it feels like there is a cannon ball in my chest and when I take deep breaths I feel restriction.  I have spoken with my pulmonologist, my oncologist, my internist, even my gastroenterologist and I am unable to receive an explanation of any kind except, well, that's normal and it might go away and it might not go away.  When I walk fast or quickly up stairs I become short of breath.  I have seen my cardiologist and have had a recent stresstest and cardiac exams and I'm told all is well.  Could you explain what this might be and will it ever go away?  Since my surgery I have had severe "silent" acid reflux -- I never had it before.  It produces a cough (which I also had badly after the surgery, but with breathing therapy it got a lot better) and am now on a regimen of antacids, hoping to make the cough go away.  Additionally, especially in the past year I've had recurring fears of cancer coming back somewhere in my body ... as far as I know there is no way to find out if there is any.  I feel well, I eat well, I am fit, but whenever something doesn't feel right I am petrified that it is cancer.  Could this be depression?  I am a very positive person, but I find I'm "living in my head", worrying about cancer.  Thank you for considering these questions.  
  • lorretta_blorretta_b Posts: 1
    Hi Lucy, thanks for sharing your time with us. My problem is that although I am in remission from breast cancer (just over a year) I still feel so exhausted all the time. To complicate matters further, it would appear that I have incurred some damage to my heart and lung which they say may be, but not 100% sure, caused by RT. I do try and exercise, I walk my dog and practice yoga but I just feel so depressed and demotivated all the time. Everything, including normal day to day tasks seem such an effort. Most of the time I just want to stay in bed. Is this normal? 
  • MMSMMS Posts: 1
    I had surgery in March for breast cancer on right side - invasive stage 1 with no lymph node impairment. Had chemo & radiation both. I am supposed to take a cancer pill for 5 years. I'M be tried 3 of them with side effects of horrible night sweats - waking up every 10 minites & terrible butt , hip, & leg pains. The 3rd pill would have attacked my bones ( I have shrunk 2 inches in the last couple of years) & possibly attacked my heart ( I've had 4relatives die from heart disease including both parents) I stopped taking all chemo pills & have not found anyone that can let me know if that is dangerous or not.
    My night sweats have lessened, but continue. The pains in my butt & hips & legs continue & have even worsened. CAN THAT BE CONTINUED SIDE EFFECTS FROM THE PILLS OR CHEMO OR RADIATION TREATMENT? If so, when will those side effects abate?
    Thank you for possibly answering this. I can find no answers on my own & my doctors have not helped.
  • GlenysJoanGlenysJoan Posts: 3
    Hi Lucy I was diagnosed with peritoneal cancer in Septfember 2015. I have had 2 surgeries and 3 separate rounds of chemo. Carboplatin and Paclitaxol I then had 15 months in remission. Then I had carboplatin and caelyx recurrence within a few months and finally weekly paclitaxol 15 sessions. All treatment stopped at the end of September. I feel cast aside in a way and left on my own even though Macmillan and my GP are very good. I just fel there should be other options open to me. I now have lymphedema in my right leg. Any help and advice would be appreciated. Thank you
  • DoctorPatientDoctorPatient Posts: 1
    I am really struggling with axillary cording with bad pain in the axilla, chest wall pain, rib tenderness, and shoulder restriction. My physio doesn’t know any specifics for treating cording. Symptoms are getting worse, almost 8 months post surgery and 6 months post RT. I’ve heard of post mastectomy pain syndrome, with persisting pain after 3 months. Not sure if this is all related, 
  • BevBev Posts: 8
    Hi Lucy
    I was diagnosed just before Christmas with Invasive Advanced Bladder Cancer, They have the MDT meeting about me tomorrow 10/01/19 I’m awaiting a date for a Radical Cystectomy.. my question is what am I likely to expect after surgery, also I’m petrified at the thought of having a Urostomy..will I have to change the type of clothes I wear? And do you think they would follow up with chemo?
    Any advice would be much appreciated, as I’m so scared 😧 of what to expect..
    Many thanks Bev
  • hessomhessom Posts: 96 Community Admin
    Hi everybody, thank you for joining us for the AMA with Lucy O'Donnell who's joining us for the next half an hour! She's now live and setting up. We'll be starting in the next few minutes!
  • Lucy_ODonnellLucy_ODonnell Posts: 15 Cancer Wellness Expert
    RobertA said:
    How fantastic to see that Lucy will be available to answer our questions on 9th January. I was diagnosed with an aggressive and incurable stage 4 cancer exactly two years ago today.  I coped with the diagnosis and the subsequent treatments pretty well at first, but a year later, I started to feel disconnected and anxious. The curious thing, was that the worst was over and the cancer was under control so in theory at least, I should have been feeling a lot more optimistic. Not so. I became quite introverted and stopped socialising and communicating, even with my wife and I was eventually diagnosed with depression. Fortunately, we sought help and the wonderful MacMillans provided us both with counselling support and we slowly but surely started to get things together again. 

    I think the reality is that a cancer diagnosis is not the same as the diagnosis of any other type illness. Your mortality is suddenly in your face and your priorities and assessment of what is important can change quite significantly.

    I will be posting my question for Lucy in the next few days. Depression is almost worse than the cancer itself and it is great to know that people like Lucy are out there to help us through it. 

    Rob 


    Hello Rob

    Thank you for this.  And I hope your recovery is moving forward well.  I know exactly how you feel about how you think you should be feeling when the worst of the treatment is over.  I have a whole section dedicated to it in my book www.cancerismyteacher.com It is a difficult time and catches us by surprise.  Sending you lots of positive energy and I look forward to receiving your question.

    With blessings & light

    Lucy

     


  • Lucy_ODonnellLucy_ODonnell Posts: 15 Cancer Wellness Expert
    LouiseJ said:
    Hi Lucy

    I am really looking forward to tuning in next week to your AMA to hear first-hand from you.
    I must confess I have only been able to read snippets of your book as I didn't have my own copy, but I have now ordered it and look forward to reading it in its entirety.
    The parts I have been able to read though had me feeling like I was looking in a mirror, such was your description of events just prior to your diagnosis. It did make me laugh. I used to describe myself in terms of having one boob turn the corner or walk into a room before the rest of me! =) I had no idea then it was cancer.

    I was fortunate to have the cancer found quite early, even though it had already spread to my lymph nodes. Thankfully it hadn't gone any further and after undergoing chemo, a mastectomy and radiotherapy, I am now free of cancer. 
    I think it is fantastic that even though you are facing a daily fight with cancer, you have turned it on it's head, and are helping so many people through this minefield. I applaud you  <3

    My question is whether you can give any insight or wisdom regarding getting used to life again after cancer and/or treatments have ended? I ask this as I have recently heard so many people saying how much of a struggle they are having coping with living with the side-effects of treatment and meds, worries about returning to work, feeling like the support has gone once the treatment has ended, depression and more. We all have to work through these things, and there is no right or wrong way. I can only speak of how I do it, and my experience, but then I am concerned sometimes of offending others. 

    Thanks so much

    Lou x

    Hi Lou


    I am so so happy that you are now cancer free and also I thank you for your very kind words.   Life after cancer is really something that I just don’t think is addressed enough because at this point you are probably at your most exhausted and run-down and wondering “what next?”  I have just looked at the “Recovery” chapter in my book to remind myself of how I felt after the initial radical treatment.  Treatment exactly like yours - chemo, radio and mastectomy - and it actually made me feel rather emotive just re-reading it again and I can imagine how you and people you know are feeling too.

     

    You will be trying to do more physical and mental things and getting back to normal with your everyday life, which is immensely tiring in itself.  It takes a long time to get over the effects of chemotherapy and radiotherapy, and sometimes it is very difficult for the people around you to appreciate this.

     

    So this is the time to really try to look after number one! And by doing this, you are actually helping all those around you who depend on you too. And just say ‘no’ to things. ‘I am not able to do that right now.’ Plan your life & your social life around your needs (as much as life permits). Leave dinners and other social events early if you are feeling tired.

     

    You really have to understand that at this moment you may not be as strong as you would wish to be.

    People may treat you as if you are ‘better’, but in fact this can be the worst time. I found that I couldn’t concentrate or focus (effects of the chemotherapy and radiation); my brain was still very fuzzy. I certainly didn’t feel capable of driving yet. All the toxins had built up and I, for one, suddenly felt quite alone.

     

    This is a time when you really need empathy and understanding. The best thing to do is make sure that those around you understand this – that you are just beginning to heal.   I found that at this point was the time that I took advantage of the wonderful Macmillan’s www.macmillan.org.uk free counselling sessions - Macmillan Cancer Support


    Sending you many positive thoughts, blessings & light


    Lucy  <3

     


  • Lucy_ODonnellLucy_ODonnell Posts: 15 Cancer Wellness Expert
    Hello Lucy. 

    Thanks for doing this. It is a great comfort knowing there is light at the end of the tunnel. 

    I have stage 4 leiomyosarcoma- removed from womb, mets in bladder and lungs. I was diagnosed 12 months ago and given 2 years to live. They have now given me 12 months to live. Chemo is no longer helping and I decided to stop all treatment 3 months ago and live the rest of my life instead of being ill in bed for weeks at a time. 

    My question is - what is your take on cannabis oil, manuka honey and other cancer fighting vitamins ? I read these miracle stories about people curing themselves and think there must be something in it ? 

    Many thanks

    dawn 

    Dearest Dawn

    I am thinking of you so much since reading this.    You know, when I was diagnosed I was given a terrible prognosis but I am still here and lets just hope and pray that this will happen to you too.  <3

    I am a firm believer in throwing EVERYTHING at cancer.  So yes - I would absolutely go for everything that suggests your outcome may be improved. 

    I havn’t tried cannabis oil myself - but I would definitely go for it.  I know many people who have used it and are very positive about it.  But just make sure you get it from a reputable source.

    As far as other supplements, protocols & treatments go, I would try whatever is accessible to you.  Please take a look at this website www.careoncologyclinic.com

     The Care Oncology Clinic is undertaking a study and providing treatments that may complement and enhance standard of care therapy. Treating your cancer in combination with your existing treatment may increase its effects. The Care Oncology Clinic is a leading London cancer clinic, providing treatments that are well understood with low side effects, thereby offering an improved quality of life. I follow their protocol and have done for 7 years.  I am sure this has helped.  If you do get in contact - speak to Raphael Swery - he is the operations manager there and knows me quite well as I have been going there forever.

    I also follow an alkaline diet as much as possible and I do take various cancer fighting supplements.  I am sure that none of these things are miracles, but I do believe that if you throw everything at it physically & mentally that outcomes are much improved.

    I think you show wonderful spirit in deciding to “live the rest of your life” instead of being “ill in bed”.  Chapeau to you my dearest,

    Sending you so much love & positive vibes

     

    Lucy

     


  • CancerfighterCancerfighter Posts: 2
    Hello everyone,
    Just checking as this is my first time on the Community Forum - are we still waiting to start?

    Many thanks! :) 
  • hessomhessom Posts: 96 Community Admin
    edited January 9
    Hello everyone,
    Just checking as this is my first time on the Community Forum - are we still waiting to start?

    Many thanks! :) 

     Hi Cancerfighter! We're now live! You can post your question here for Lucy
  • SunshinedaffSunshinedaff Posts: 368 ✭✭✭
    Hi @Cancerfighter

    Welcome to you, 

    Lucy is answering questions now.  If you have a question, I would still post it. 

    Lou x


  • Lucy_ODonnellLucy_ODonnell Posts: 15 Cancer Wellness Expert
    edited January 9
    Eire said:
    Hello

    I wonder if you could advise please.   My sister is currently undergoing radical chemotherapy for her Breast  Cancer.  The side effects have been horrendous and of late she has been unable to eat any solid foods.  In her words, she has almost become anorexic, but we all know that prior to this terrible thing, she had a normal healthy appetite.  Following her latest visit to the Oncologist, they too have raised concerns over her ongoing weight loss, now classified as being underweight and are worried that if things continue, she may not be fit for surgery, when her chemo has finished.  She has been given Ensure and Complan to take daily, but I wonder if there is anything else I can do to encourage her to eat in order to regain some weight.  Is this a  psychological effect of the chemo and what can I do to help her.  Thank you.
    Hello Eire
    I am so sorry to hear about your precious sister losing so much weight during her treatment.  As you know, it is really important that she doesn't lose too much more - for all the reasons you mentioned.  I am sure you have tried giving her things that she really likes - and at this point - I would break my own rules about "no sugar" - and if she likes those types of things - then try and persuede her to eat them.
    It can also be a psychological effect of having the treatment and cancer and I would urge you to get some support within the cancer community.  I know that @livebetterwith have a Support Directory, but there is also MacMillan Cancer Support who give 6 counselling sessions free.  And there are also physical support centres that Maggies Cancer Support provides which are connected to some of the main hospitals.  Maggies (www.maggiescentres.org) is a wonderful drop in centre which really could help alleviate some of your sister's and yours (family welcome)  concerns and help boost your sister's confidence which may then boost her appetite.  I urge you to contact both these charities.
    I send you my very best and positive thoughts, love & light
    Lucy 

  • Lucy_ODonnellLucy_ODonnell Posts: 15 Cancer Wellness Expert
    Hello everyone,
    Just checking as this is my first time on the Community Forum - are we still waiting to start?

    Many thanks! :) 
    We have started - love & light :heart:
  • Lucy_ODonnellLucy_ODonnell Posts: 15 Cancer Wellness Expert
    Anneliese said:
    March 2017 I was diagnosed with non-small lung cancer 1B.  I had surgery to remove the upper two right lobes of my lung in May 2017.  I did not require chemotherapy or radiation.  There is no cancer in my family;  I've never smoked. I am lucky.  However, since the surgery I have had a "lump" in my chest where the two lobes once were.  At times it feels like there is a cannon ball in my chest and when I take deep breaths I feel restriction.  I have spoken with my pulmonologist, my oncologist, my internist, even my gastroenterologist and I am unable to receive an explanation of any kind except, well, that's normal and it might go away and it might not go away.  When I walk fast or quickly up stairs I become short of breath.  I have seen my cardiologist and have had a recent stresstest and cardiac exams and I'm told all is well.  Could you explain what this might be and will it ever go away?  Since my surgery I have had severe "silent" acid reflux -- I never had it before.  It produces a cough (which I also had badly after the surgery, but with breathing therapy it got a lot better) and am now on a regimen of antacids, hoping to make the cough go away.  Additionally, especially in the past year I've had recurring fears of cancer coming back somewhere in my body ... as far as I know there is no way to find out if there is any.  I feel well, I eat well, I am fit, but whenever something doesn't feel right I am petrified that it is cancer.  Could this be depression?  I am a very positive person, but I find I'm "living in my head", worrying about cancer.  Thank you for considering these questions.  

    Dear Anneliese.

    Thank you so much for taking the time to write in to me. 

     It is extraordinary - but the symptoms vis a vis your chest and breathing are really similar to symptoms I and many others have been experiencing since being treated for cancer, even though we have different cancers.  So I understand what you are saying about getting out of breath when walking quickly or up a gradient that is steep.  I have heard about a medication called Candesartan,  that helps with this and has no side effects.  But I havn’t been to see a cardiologist about it myself yet - so that is all I can really tell you.  But this cardiologist – Alex Lyon (he is affiliated with Leaders In Oncology Care in London) is apparently very very good and sorted out the problem for a friend of mine.   

    I am not a Doctor but I would assume that the reflux is a side effect of your cancer.  I have it too, and since diagnosed I have discovered that Melatonin (which is a natural sleep aid - people use it for jet-lag) helps with these side effects.  I have learned that there is more melatonin in one stomach’s than there is in one’s brain.  !!!  Have a look at this article about the relationship with melatonin and cancer www.ncbi.nlm.nih.gov/pmc/articles/PMC5503661/

    And then this article https://universityhealthnews.com/daily/digestive-health/melatonin-for-gerd-how-to-help-acid-reflux-with-this-natural-supplement/ shows how researchers compared the effects of 3 mg of melatonin per day to drug treatment with omeprazole (a PPI) for eight weeks. They found symptoms of GERD (REFLUX), like heartburn and pain, to be decreased after four weeks and completely resolved after eight weeks in both groups.  And it is suggested that taking Melatonin is better for your than PPIs.

    Regarding your fears of your cancer returning: - I am not surprised you have those fears.  You wouldn’t be human if you didn’t.  I would not say that was depression - I would say that these were just totally justified feelings to have and that you must go with your feelings, “feel them”, and let them pass.  I have begun to meditate or practice mindfulness so much more since my diagnosis - infact it has led to me qualify as a meditation teacher.  I find that these holistic therapies help me so much in coping with those fears.  They teach me to live in the moment (as much as you can!).   

    If you persist to be worried about how you are feeling then it may be wise to see your GP, but first I would take advantage of Macmillan’s 6 free counselling sessions:  Macmillan Cancer Support

    I hope this will be helpful to you Anneliese

    Sending you healing, love & positive vibes :heart:

     

    Lucy


  • Lucy_ODonnellLucy_ODonnell Posts: 15 Cancer Wellness Expert
    Hi Lucy, thanks for sharing your time with us. My problem is that although I am in remission from breast cancer (just over a year) I still feel so exhausted all the time. To complicate matters further, it would appear that I have incurred some damage to my heart and lung which they say may be, but not 100% sure, caused by RT. I do try and exercise, I walk my dog and practice yoga but I just feel so depressed and demotivated all the time. Everything, including normal day to day tasks seem such an effort. Most of the time I just want to stay in bed. Is this normal? 

    Dear Loretta

    I know exactly how you feel.  One year is SUCH a short short time to have been in remission.  I ended my radical chemo, radio and surgeries 6 years ago (although I am on less invasive treatment permanently now) and I have to say, I was only just thinking last night after doing a really long drive 5 hours that I was not nearly as exhausted as I had been after that when I did the same drive just over a year ago.  I am telling you this because I think it takes several years to get over the effects of some cancer treatments – especially chemo!  I think that when you have finished chemo and radio you are then at your most exhausted.  You cannot expect to feel like your old self immediately.  But on the positive side – things WILL get better, slowly but surely.  Please take baby steps and please look after yourself.  Sometimes we forget about "self-care" – do you like mindfulness, meditation or reflexology  ?– try and make a routine out of those kind of therapies that you like.  Really nurture yourself and don’t feel bad about wanting to stay in bed!   You need to establish:  are you feeling so tired becuase you are down - or are you feeling so down becuase you are tired.  These things are normally related and it is a bit of a vicious circel.   If after a time you still feel very down, maybe you should see your GP – they can help you to get you back on your feet and also as I mentioned to another lovely person who has written in that  Macmillan Cancer Support offer 6 free counselling sessions – so it is worth getting in touch with them. 

    Sending you love & light, & healing energies,  Loretta

    Lucy


  • Lucy_ODonnellLucy_ODonnell Posts: 15 Cancer Wellness Expert
    MMS said:
    I had surgery in March for breast cancer on right side - invasive stage 1 with no lymph node impairment. Had chemo & radiation both. I am supposed to take a cancer pill for 5 years. I'M be tried 3 of them with side effects of horrible night sweats - waking up every 10 minites & terrible butt , hip, & leg pains. The 3rd pill would have attacked my bones ( I have shrunk 2 inches in the last couple of years) & possibly attacked my heart ( I've had 4relatives die from heart disease including both parents) I stopped taking all chemo pills & have not found anyone that can let me know if that is dangerous or not.
    My night sweats have lessened, but continue. The pains in my butt & hips & legs continue & have even worsened. CAN THAT BE CONTINUED SIDE EFFECTS FROM THE PILLS OR CHEMO OR RADIATION TREATMENT? If so, when will those side effects abate?
    Thank you for possibly answering this. I can find no answers on my own & my doctors have not helped.

    Dear MMS

     I was always get a little anxious :worried: when I hear that patients have stopped taking their medication for cancer.  I guess the pill you are talking about that you have to take every day is Tamoxifen or Letrasil or something like that – hundreds of women are on this very effective daily pill, including myself.  I’ve been on it for 7 years and the side effects are horrible – just as you have described.  But it’s a decision that you have to make yourself really.  For me – I feel it is better to have the side effects and more chance to remain well than not to.  I am disappointed :disappointed: that your GP cannot help you because that is exactly what GPs are for.  I think you must definitely get some more information and help about this as soon as possible.  How about talking this through with some expert help within some cancer charities – like Macmillan Cancer Support ?  or visiting your local www.maggiescentres.org if you have one near you.  Another thing is menopause – I don’t know how old you are but maybe menopause if you are of the age, is contributing to this.? 

    You say that your limb pain is still recurring even though you are off the pills – and you worry about your bones.  Again – you should definitely be talking to a cancer clinic or GP – I would advise you to have your calcium levels checked.  Also – you didn’t say how long you had been off the meds.  Often these cancer medications can deplete our calcium.  Are you having a healthy diet with lots of fish oils etc etc?

    My book – Cancer Is My Teacher -  Cancer Is My Teacher- does go into a lot of issues that you are having at a more deeper level – and at the same time it is a very easy read.  So maybe it is a good idea for you to get that.  In the back and on my website www.cancerismyteacher.com  I have a few resources listed that will help you too.

    I wish you all the best in your recovery, but please don’t wait too long in finding some more medical advice and information for your situation.

    With blessings & light

    Lucy :heart:


  • AngelWingsAngelWings Posts: 2
    Dear Lucy, I had a left breast mastectomy exactly 2 years ago following my cancer diagnosis. Although mentioned at the time nothing has been said or offered to me since. Is it too late or should I just be glad to be alive and accept my flat side which has healed well and continue with my life which includes regular gym sessions and caring for my disabled husband who unfortunately had an above knee amputation last year.  He doesn’t want me to have another operation as he says they all contain risk and how would we both cope when I am in hospital and recovering afterwards.
  • Lucy_ODonnellLucy_ODonnell Posts: 15 Cancer Wellness Expert
    Hi Lucy I was diagnosed with peritoneal cancer in Septfember 2015. I have had 2 surgeries and 3 separate rounds of chemo. Carboplatin and Paclitaxol I then had 15 months in remission. Then I had carboplatin and caelyx recurrence within a few months and finally weekly paclitaxol 15 sessions. All treatment stopped at the end of September. I feel cast aside in a way and left on my own even though Macmillan and my GP are very good. I just fel there should be other options open to me. I now have lymphedema in my right leg. Any help and advice would be appreciated. Thank you

    Hello dear Joan

     I can completely understand how you must be feeling.  You have been through the most enormous amount of treatment and you deserve a medal for that.  I have answered a similar question just before you to @LouiseJ – so I won’t go into as much detail so as not to repeat myself!  But having stopped all treatment only in September 2019 – this does not give you way nearly enough time to recover.  It has taken me several years to get over the effect of my cancer treatment and I have learned that you must really “pace” yourself and “nurture” yourself – as I told @LouiseJ

     I don’t know where you live but there is the most wonderful charity called Maggies Centres

    They have about 26 phsyical centres around the UK where you can drop on – no appointment necessary.  They fell like a home from home and are full of resources, comfy and cosy places to sit and people to talk to.  They also have activites and other things going on.  They are attached to major hospitals in the UK – but they are separate buildings and they are designed with beauty, peace and nurturing in mind.  I think if you were near one, it would be a very lovely place for you to visit to help cope with your feelings.  They have helped so many people.

    Also in my book Cancer Is My Teacher – I do delve into the feelings you described and I just want you to know that it happens to so many people and that is why I think it would be a good idea to explore a charity like Maggies.  And just to reiterate – it is so so so soon since your treatment ended.

    As regards to lymphodema in your leg – are you able to get regular lymphodemic massage – this is essential.  And you can ask the lymphodema pracitioner to show you how to massage your leg on a regular basis  (I also have suffered from this too).  I am sure you have already, but it is a good idea to wear support lymphodema stockings too.  Lymphodema is not pleasant but it is manageable.

    Dear Joan – thank you for getting in touch with me.

    With blessings & light

     Lucy

     


  • hessomhessom Posts: 96 Community Admin
    edited January 9
    Hey everybody! We're actually out of time! BUT there's been so many fantastic questions, @Lucy_ODonnell has kindly offered to answer the few remaining questions and will be online a little while longer!
  • CancerfighterCancerfighter Posts: 2
    Dear Lucy,
    Thank you for giving of your time this evening. Unfortunately, I have not had an opportunity to read your book but will be ordering a copy straight after this.
    Can you please tell me who you have brought on board to help you with your overall care and treatment.  For example, do you have a nutritionist? naturopath? herbalist? Who, if anyone, gives you advice to help you maintain your health and wellbeing?

    Many thanks,
    Cancerfighter
  • Lucy_ODonnellLucy_ODonnell Posts: 15 Cancer Wellness Expert
    edited January 9
    I am really struggling with axillary cording with bad pain in the axilla, chest wall pain, rib tenderness, and shoulder restriction. My physio doesn’t know any specifics for treating cording. Symptoms are getting worse, almost 8 months post surgery and 6 months post RT. I’ve heard of post mastectomy pain syndrome, with persisting pain after 3 months. Not sure if this is all related, 
    Hello there
    Grrrrr - cording - it is so horrible to endure that.  I am so sorry.  It makes me rather cross that people are not told about the possiblility of cording and all the other ailments you have had.  Or at least - not told about any remedial action that you can take.  Cording can happen straight after surgery or even months later - and I think it is quite common.  I definitely had it.  It is thought to be caused by hardened lymph vessels.  Being taught by a physio-therapist how to stretch your are, to stretch the cord, as it were is vey helpful and you will get over it more quickly.  You say your physio therapsit doesnt know anybody who can treat cording but there are physios out there who do, and also - please, if you can, can you see a lymphodema specialist - this really helps with all the things you have mentioned.  The other thing I found incredibly helpful is yoga - and I mean - really simple stretching moves.   I think yoga and stretching exercises are absoutely crucial. So for you - can you find a place to do yoga, a physio to help with the cording, and a lymphodema massage person.  It may sound a lot to get on to - so take each issue step by step.  There are cancer centres and charities that provide these things to -  www.maggies.org is one of them - have a look on their website and see if there is one near you.

    Sending you love and light and healing energies

    Lucy
    PS . Try and create a 10 minute stretch in your bedroom in the morning - 1st thing!
  • LouLou Posts: 2
    Hi 
    i was diagnosed in Nov with breast cancer 
    I have had a mastectomy and axial lymph node clearance but have mestasis in bones
    I have been on letrozole for month and am due to start palbociclib - tomorrow 
    I’m concerned about side effects and how to deal with tiredness ? 
    Have you any knowledge of the treatment or can you give any advise 
  • Lucy_ODonnellLucy_ODonnell Posts: 15 Cancer Wellness Expert
    Bev said:
    Hi Lucy
    I was diagnosed just before Christmas with Invasive Advanced Bladder Cancer, They have the MDT meeting about me tomorrow 10/01/19 I’m awaiting a date for a Radical Cystectomy.. my question is what am I likely to expect after surgery, also I’m petrified at the thought of having a Urostomy..will I have to change the type of clothes I wear? And do you think they would follow up with chemo?
    Any advice would be much appreciated, as I’m so scared 😧 of what to expect..
    Many thanks Bev
    Dear Bev

    You brave brave woman.  I am so sorry about your diagnosis - especially over Christmas.
    I think the best thing you can do is to wait and see what they say tomorrow as regards to your treatment plan.  It always differs from person to person.  If you have to have chemo, there are many ways to help make it more comfortable.  There is a lot of information on the LBW site and also I have a whole chapter in my book www.cancerismyteacher that deals with this and all the other side effects of cancer treatment and the different stages of treatment.  It might be worth you getting this.  It is a quick and easy read and just says it how it is.

    I am sure that you are absoultely petrified about your surgery - no normal person wouldn't be.  You need to do everything you can do to reduce your anxiety and stay as calm and as nurtured as possible.  I hope that you have family or friends who can look after you over this period.  Again, in my book, I list a lot of things friends and family can do to make a difference.  I always say that having some lymphodema massage shjortly after surgery is very beneficial becuase it gets your lymphatic system going which can slow down and be overloaded at this time; or just mild reflexology.  

    There are also some really good mindfulness and mediation out there that could help you with staying in a calm and possitive frame of mine.

    I cannot answer your question about clothing vis a vis your Urostomy - I would have to do a little research on that.

    Stay strong dear Bev and I wish you all the very very best of luck with your surgery

    Love & light & healing vibes

    Lucy :heart:
  • Lucy_ODonnellLucy_ODonnell Posts: 15 Cancer Wellness Expert
    Lou said:
    Hi 
    i was diagnosed in Nov with breast cancer 
    I have had a mastectomy and axial lymph node clearance but have mestasis in bones
    I have been on letrozole for month and am due to start palbociclib - tomorrow 
    I’m concerned about side effects and how to deal with tiredness ? 
    Have you any knowledge of the treatment or can you give any advise 
    Dear Lou

    I can definitely help you with advice on this as I was diagnosed with Stage 4 Breast Cancer with mets in my bone and liver.  So you have embarked on a similar journey to me.  First of all - let me say I am so sorry this has happened to you.  I do have so much to say on the subject of side effects and tiredness - it is quite a lot to write down now but I do go into it in great details in my book - Cancer Is My Teacher.  The link to it is on my website www.cancerismyteacher.com

    In short - you will get very very tired and you just need to give into it and try and do as little as possible (I know that may not be easy).  And sleep is so so important - people often forget that. And there will be numerous side effects I would think - alot of which are not major and if you know how to control them and anticipate them, then you are already winning.  You will also need a lot of support which goes without saying.  Again - I go into these in my book and there is also info about this on the amazing LBW site.

    I send you many positive vibes, love & healing energies and please, STAY STRONG

    Lucy 

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