Thanks very much Jan. Yes, I love the way you use the word "clumsy" to describe the people who just don't know what to say or how to say it. That's a very diplomatic way of putting it:). I can imagine how difficult it has been for your husband. I don't have an "other" half, and have been going through all of this on my own 99% of the time so I'm pretty washed from it all and tired of answering the "how are you"? questions. Sometimes I just feeling like screaming "how do you *think* I am? I used to say "I'm fine" (because I was) but since radiotherapy started I haven't felt so fine and have said as much. I have no problem being honest about how I feel but as we've both said-many of our loved ones can't handle hearing it and so they go into reassurance mode, primarily for their own self preservation. 🙈
It really helps to hear that other women (like yourself) understand the feelings of invalidation, etc.
I hope you have a really good long week-end ahead.
Glad to hear it was of value, Marla. Like I said, I’ve read it many times, when I need a boost. I did suggest the site set up a library section where articles like this could be clearly signposted but it hasn’t happened so I drop it into various replies and hope other people keep the ball rolling too. It’s too relevant and therapeutic to be lost.
As regards the invalidating comments, I think I’ve been fairly lucky (apart from the fact that neither of my brothers has ever enquired after my wellbeing - because they can’t handle it!). I’ve had one clumsy friend who reassured me that we all have to face death so maybe knowing my odds is a good thing. I’m laughing as I type that - that was my crisis when I stupidly googled my NPI score and my b-c nurse had to sort me out (wonderfully reassuring advice I repeat in the forums). But yes, people minimise our situation in order to reduce their own discomfort/anxiety. I have a group of friends who never mention it, like it’s done and dusted, all over, rather than being a daily part of life now. They’ve moved on, so should I... but nothing is ever said. And my poor poor husband who has suffered far more fear and anxiety than I have over this - he’ll say things like ‘When will this ever be over?’ Basically, he’s worn out by it all. He’s read the article (“why would I want to read it again?”) but still deep down, hopes life will get back to normal. Let them have their little protective bubbles but I’d advise you to speak out in some way so you don't feel invalidated each time. You should know the best ways 😉
All the best with your new normal (I’m furious the government has hijacked the term for their political soundbites).
Jan-I've just finished the article (had a phone call in between so it took a little longer) but I have to say-this is exactly what I needed to read. It is the most validating and empathic piece I've read and much needed at this time. I come from a family that doesn't really *validate*-for example, I was in tears on the phone to my mother two days ago saying "it's not going to be 'over'-it could recur at any time" (she had been suggesting that come Tuesday, when my rads are finished...it'll be "over"). And so when I said "it could recur at any time"-she said "it could happen to any of us"-you'd have to know my mother and have heard the *tone* to understand that she was trying to say "any of us could get cancer-you're not unique or special". It felt incredibly invalidating, given she is nearly 80, and as far as we both know, she hasn't had cancer (though she hasn't had a mammogram in *years* if ever)-she avoids doctors like the plague. After reading Dr. Harvey's article I realise now more than ever before that she said "it'll be over" because that is what *she* needs to believe, for me. She can't cope with me being ill. And many of us have had this experience, where we've needed to put that mask on (not COVID mask)!-the "hiding our true feelings" mask and pretend we're fine-for the sake of our loved ones who struggle with us being unwell.
All this to say that the article has reinforced much of what I already knew and affirmed/validated my feelings, when my own family has struggled to do so.
Thank you again-I'd recommend the article to anyone struggling emotionally.
I agree with you 100% re-the Letrozole. Interestingly, it is the letrozole that allowed me to avoid a mastectomy-because my cancer shrunk enough that my breast surgeon was able to perform (an aesthetically amazing) lumpectomy (twice-but nonetheless...clear margins the second time round)!
I have no plans to stop taking Letrozole but I just wanted to acknowledge how crappy it can make us feel, and that friends/family who think that treatment is "over" just because surgery and rads/chemo are over...are mistaken.
Thanks so much investigating vitamin B12 and magnesium . Despite the SEs would never stop taking Letrozole ....it really is a lifesaver and only 30 years ago our chances of long-term survival would be so much lower . Just wanted to say that to any other women struggling x
Marla ❤️ You do what you need to do for you ❤️ You are so focused getting through treatment for so long then all of a sudden you’ve got through and you are sat in a daze a bit realising what you’ve got through ❤️ Think most of us have felt like that ❤️ My oncologist said after I’d finished “ now go and live” so that’s what I do 😁 I am super vigilant and any concerns about anything I’m straight on the phone to unit and they get me in, it’s finding a balance and you will ❤️ It just kind of happens and it’s a lovely feeling 👍😁 everyone does what ever they need to do in their own time and own way, you put you first and do it your way because you know what’s right for you ❤️ And always remember how amazing you are 😁💕💕✨✨Shi xx
Jan-I've just read page 1 (of 9) of the article you sent me by Dr. Harvey and I can't thank you enough:). This is what I needed this morning. I'm going to read it in full but just wanted to say thank you so much:).
Thank you Shi:). I really appreciate the suggestion of speaking to someone "like me". I think I actually need a few days just *for* me...and then I might feel up to speaking with someone. I've been on autopilot for so long, it's all just hitting me now, i.e., what this entire experience has meant, and will mean for my future, etc. I'm also hoping that my own therapy appt. week after next will help me process the last few weeks. The radiotherapy part of the treatment has been the hardest for me (physically) for other reasons but I also suspect it's been hard *emotionally* because I'm also aware it's the last treatment phase for me.
I really appreciate your message...I hope you are doing well yourself:).
Thanks so much Susan. I'm sorry to hear that you have mild lymphodoema and ongoing joint pain from the meds. I can relate to the joint pain. It's hard for friends and family to grasp that just because surgery & radio/chemo are over, that we may not feel well for quite some time. We mustn't forget that the medication (i.e., Letrozole) *is* a form of treatment, and for many of us, makes us feel pretty miserable. I consider that I have been tolerating it fairly well but there is no doubt that it has reduced my own mood and has made me incredibly grumpy. I've been on it 19 months and like you, am meant to be on it for 10 years.
Sending you much love and good health.
Hi Jan-thanks very much for sharing your experience with me. I actually do have a breast cancer counsellor who I still have sessions with, albeit not as frequently as before-I *am* a therapist myself:) so ironically, while I realise that my next session with my own counsellor will be an important one (first one post-treatment) I'm also aware that some of how I feel is directly related to the change of relationships (nurse changes, etc) over the last few weeks, and I think I am just struggling with this more than others may.
I really appreciate the link that you posted-I'll have a read for sure. Thank you for being there and I hope your own recovery is going well.
It is a bit of an open road ahead once you know you’ve had your last appointment but that doesn’t mean you are abandoned. You will be monitored on Letrozole and you should be able to contact your original breast care nurse, including for emotional support. Mine told me that she was in contact with patients for many years and certainly I emailed her when I hit a crisis this January and got an invaluable response. I also left a message yesterday teatime and had a return phone call 8.30 this morning - and three hours later, one of my oncologists rang me for a discussion of what’s bugging me (a prolonged side effect).
They work closely as a team but have their specialisms. I started with the head honcho who dealt with my diagnosis and treatment plan (and my phobias), then saw another oncologist who specialised in the chemos, (plus a whole range when I was hospitalised), then saw the one who specialised in radiotherapy and hormone therapy. The last one was the least successful communicator but the nurse assured me today I could speak to any oncologist I chose - there’s no protocol. I too was diagnosed in 2018, in September, and finished my treatment last June. Yet here I am, still able to discuss my worries with my breast care nurse and with the oncologist of my choice.
Obviously the best situation will be one where you don't feel the need to consult them but, if you do, they are still there for you once the treatment is over. I think it’s normal to feel abandoned - no more routine of hospital, hospital, hospital - but there are positives. There’s a brilliant article which one of the nurses here posted. I’ve read it many times and found the author (who happens to be based at my hospital trust) has got it spot on. Give it a read if you can: https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-wha...
This is a difficult time anyway but doubly difficult for you. However, you’ve completed your treatments (apart from HT) and you can move on with confidence that you’re cancer-free - once you’re ready. You might like to investigate what support services the hospital offers - Macmillan runs an excellent service at my hospital, with counselling, alternative therapies and group activities like the Moving Forward course (a bit too soon for you I suspect). We also have a Maggie’s Centre and there’s a Haven in the city centre. They all provide free and very experienced emotional support. I only found out about them on the last day of my radiotherapy - so maybe here’s a good pretext for contacting your original nurse, to ask about support services?
All the best in looking forwards, not backwards,
Marla ❤️ Please call the number on here and use the someone like me option ❤️ It felt like being a broken jigsaw puzzle after treatments done 👭 but day by day and step by step you do put yourself back together ❤️ You do whatever you want and need to do for you, there are no right or wrongs and remember how fabulous and lovely you are ❤️ Because you are ❤️💕💕✨✨Shi xx
It’s tough . I finished radiotherapy last September signed off by oncologist November mammogram clear Jan but 9 more years of Letrozole and annual check-ups . I have mild lymphodoema ongoing joint pain due to meds and of course at times the ‘what if ‘ blues. But I am alive . ...... you will have good days and bad days just keep going . i am told in time it does get easier at least we have time to find out hopefully. Take care x
I've had 2 lumpectomies and am now on Day 18/20 of my radiotherapy; I finish next week and that will be it for me re-treatment. I had been "strong" all through my appointments, and 2 lumpectomies, but over the last 3 days I've been in tears much of the day (when I haven't been working). Even lying on the radiotherapy table today and yesterday...tears streaming down my face. It has hit me hard. That the "journey" is coming to an end, and what life will look like post-breast cancer. There have been other factors that are no doubt contributing to my lowered mood, i.e., I was in pretty regular contact with my breast cancer nurse who was attached to my surgeon's department (for 19 months) but since my radiotherapy started, I've not heard from that nurse, and instead have been assigned another nurse (from the radiotherapy team). Not all nurses are created equal:) and I miss the nurse who I got to know well.
I also find it odd that when I asked the radiotherapy oncologist (the one involved in overseeing my radiotherapy) who will be monitoring me, etc. he said that my surgeon will and that he will be overseeing the bone density scans and my letrozole medication. He has asked me who else was involved in my treatment, to which I replied "Dr. X"-the oncologist based in the same hospital as my surgeon and the one who arranged the Oncotype Dx test, & started me on Letrozole, etc. If I'm honest, it feels like my original "team" has abandoned me:). I was diagnosed in August 2018 and have been under that team all along but now that I've started radiotherapy, I seem to have a new team looking after me. I don't know if the cancer teams realise that patients value more than just their knowledge and expertise-we value the connection, the relationships that we form with them. And as much as the new breast cancer nurse is doing her best to be helpful and nice-I don't know her in the same way that I know my other nurse & it just doesn't feel the same.
I'm also aware that COVID19 is not helping the situation in that I can't celebrate the end of treatment face to face with my parents (who live in another country).
Has anyone else experienced low mood towards the end of their treatment and have you experienced a change-over of "keyworkers" and felt dissatisfied? I emailed my original BC nurse on Tues with a specific question and haven't heard back and that just magnifies my feelings of abandonment and sadness. It feels really awful at the minute.
Without a doubt, this whole experience has had more of an emotional impact on me than physical.
It's hard to explain the feelings to my parents-they assume that once my radiotherapy is over I'll be able to "get on with life" and "get back to normal" and somehow I don't agree. I feel I am losing the ability to control my emotions, whereas for the last 21 months I was doing so well doing just that!
I'm interested in hearing about your experiences...