My sincere apologies for such a late reply to your last message-I've had a # of (non medical) appts over the last week, phone calls and god knows what and emailing and social communication always takes a back seat.
I hear you loud and clear on the "you got lucky" front in only having to have 5 radiotherapy sessions. I think it must be inherent in our make-up to compare our own situations to others which is why I do my best not to do that:). It is so unhelpful. Because...as you say *everyone's* BC experience is different. I've had other women who have had BC assume that I've had X, y or z treatment, and the reality is that we all have different treatments, depending on our type of cancer. I even had someone advise me that I was in the "vulnerable" group when COVID came knocking on our doors, but in the end, I learned from my team that no, I am not vulnerable because I haven't had chemo. Radiotherapy doesn't render us vulnerable. Everyone likes to give advice, and often well-intended advice but the truth is-we need to rely on our medical teams for advice and *not* other BC patients. We can listen to their experiences, and then we must decide, with the help of our medical team, what is best for *us*.
I am sorry your nails are still in a state but so pleased that you like your hair:). I am so inspired by your positive attitude Lou: "bald and proud" and coordinating with your face mask colours:). That is how it should be "bald and proud". We shouldn't be made to feel less attractive just because we may have lost our hair from chemo. So kudos to you for your amazing attitude!
I am going to end here but just to say...I'm always here:). I just may be delayed in replying depending on what's going on, on my end.
Wishing you a lovely weekend....
My apologies-I meant to reply more fully on the week-end and completely forgot and am now swamped with appointments all week.
I hope you are well and I *will* reply more fully-I don't know when that will be though:).
Just a quick acknowledgement of your message-I will reply more fully over the week-end:).
I had a lovely day yesterday - coffee, walk and late lunch - it was with my best friend from school and we have been friends 40+ years - she is the friend who messages every morning and sadly her dad is very ill so I am also supporting her in a different way (he was like another dad to me especially when I lost mine).
Yep I get the bit about other people - I have a few friends who have sadly had BC recently and years ago and when I mentioned I was only having 5 radiotherapy - I got you are lucky from some - yes I am only having 5 but it apparently is more intense and I am just fortunate I have fallen into the new study that has now come to fruition but I have also gone through most of my treatment through covid and single - many of them thankfully at their own admission had husbands/partners by their side.
At the end of the day we are all on different journeys and that is why this forum is so amazing because you can read messages and if you feel you can add something to their story you do so but others you may not relate to so you don't respond.
I still hope one day I can join a group and I am also planning on being a Someone Like Me volunteer when I am through this part of the journey.
I think also some people don't understand that it will not go away post treatment, physical scars, pain and emotions will take forever if ever to recover - my horrid nails are still a daily reminder of what chemo did to me (and the nails were only part of it) but on a positive note, I am actually loving my covering of hair and the slightly bald look especially in the recent heatwave - currently I am bald and proud - I am no longer colour co-ordinating with headscarves but with face masks!!!
Much love to you too
Thank you, I can relate to everything you have mentioned - I haven't reached out to meditation as yet (still not convinced it is my thing) but it is finding what works for you.
For someone who was always busy, active and had a full diary - having cancer has changed that (much to many people's disbelief) but I have to now do things that work for me, not book myself up and have flexibility in everything that I do and thankfully my friends do appreciate that. There are days where the thought of doing something in the evenings actually fills me with dread and other days where the energy is there - it is just not knowing when the good and the bad days kick in that is hard to cope with.
The weariness and fatigue is not like anything I have ever experienced, I was a duracell bunny during chemo (sleep escaped me but I refused sleeping pills) but now all the steroids have worked their way through, sleep is better but it doesn't how much you have, the fatigue feeling lingers and my sofa is often my new best friend.
So good to be in touch with you all
I'm so pleased to hear that you had a better day on Tuesday & I hope what was an even better day yesterday, meeting with your friend, who sounds like they were an amazing support to you throughout your cancer treatment. I have no doubt that all the drugs you were on during chemo would have affected you both mentally and physically, especially as someone who was never on a lot of meds to begin with! It's great to know that you won't need to be on any medication long-term. I hear you on the Hagan Daas salted caramel ice cream front & odd tipple! Whatever worked for you-that's OK!
I couldn't agree with you more re-how helpful a face to face group would have been. Truthfully, I would find a group like that helpful even now-just to be in the company of like-minded women, and women who have had similar experiences. Throughout my own diagnosis and treatment I only had one person in my "support circle" who had had breast cancer before-but they had it years ago, and the treatment they had was not the treatment that I had, and for a variety of reasons-they didn't have the options that I had, and when speaking to them, I didn't feel 100% that they were "with me"-on my side. I was picking up on some envy, & perhaps resentment, that I was able to have less aggressive treatment, etc. & other surgical options, and so from this experience I did come to realise that not all breast cancer patients are created =, and in order for a support group to really work-we have to be very accepting of others' choices, options, and realise that even within the "breast cancer" group, there are many different types of BC and different treatments that we all may not need, or have the option to have. Am I making sense? I suppose what I am saying is that as much as I would value a face to face group, it's so important that all members are able to demonstrate *respect* for other group members, in order for a group like that to work.
Having said all of the above, it is still something I would love to be a part of. If not now, then one day down the road. Breast cancer will always be a part of our lives and the importance of having the support available to us cannot be overstated.
Sending you much love for the rest of the week....xxxx
P.S. You brave girl for braving Storm Francis on Tuesday!!!! I stayed indoors on Tues. but went out yesterday. xxxxx
Thank you for sharing your story with us-it certainly sounds as if you are feeling much stronger at the moment, and that the on-line wellbeing group and meditation have helped you enormously.
It's very encouraging to know that the visible effects of the radiotherapy have almost gone-I can echo that observation:). I'm now 3 months post-radiotherapy, and aside from some scar tissue that I can feel close to the nipple. I really can't complain re-any visible signs. My radiated skin is very slightly discoloured, but as you said, nobody else would notice.
Please continue to update here on how you are doing emotionally...I think it's so important that we can have a safe space to share and discuss our feelings, without being made to feel that we should've grateful that we've survived the physical aspect of the cancer. Sure, the physical illness may be gone, but the entire experience can leave longer-lasting emotional scars. Sending you much love...xxx
I can so relate to your comment about friends thinking we should be jumping for joy and to be honest the thought in my head is that I should be skipping out of bed every morning too.
The problem is that it is not how I feel inside and it is only people who have experienced this illness and treatment who understand. Of course counsellers and nurses have been very understanding in explaining that this is a perfectly normal reaction also which I do appreciate. Best wishes.
Thank you for your kind reply and apologies for not replying sooner. I wanted to write a few positives as I am now 4months post radiotherapy.
I am happy that the visible effects of Radiotherapy have almost gone.... in such a way that it will really only be myself that notices any difference. I felt because of covid I didn't have enough people to speak to about the physical and emotional effects during my Post treatment meltdown.
I am now feeling much more positive which is how I felt before meltdown ....but really believed that positivity would never return. Patience is difficult ....but feelings cannot be forced. I am still having tiredness and fatigue so unable to return to work at present. I seem to have one good week followed by one bad although it is not as specific as that .....which makes planning to meet with friends etc quite difficult.
My sleeping has improved and although I had never had time or interest in meditation...that is what helps me get back to sleep in the small hours of darkness and quiet. Sometimes it may just be some music I listen to or 10-20 mins of meditation.
I feel my diagnosis has brought less tolerance to the calm tolerant person I was and I have been working hard with an online wellbeing group to reduce my overthinking.
This has been a godsend for me and although at times I feel I don't understand some of the practices and sometimes felt that I just wasn't getting it....with patience I feel such a difference.
Out of the blue recently I woke up and felt I have my inner strength back. It was a surprise as had added family health worries at the time that I felt I may not cope with. I'm not out of the woods yet but the sun coming through the trees is getting stronger. I know every day wont be full of joy but thankful that these days are more frequent.
My GP advised me that during my last call to her describing my fears...that she was hearing very similar from the majority of her patients. She pointed out that this was mainly due to covid without the additional worry of a cancer diagnosis and treatment.
I thank you for this forum as there is nothing quite like communicating with people who have had a similar experience and wish everyone well on there journey.
Thank you for the lovely message.
Monday was a bad day, Tuesday was a better day and today is a day's holiday and meeting a very very close friend (who has been the one who has messaged me every morning to just check in on me) for a walk and late lunch.
Thankfully I will not be on medication for life (and I am thankful for that) but you are right - before diagnosis, I was healthy and hardly took medication (other than for asthma and hayfever but that was all under control). At times during chemo with the added complication of a blood clot, I am sure I was rattling with the amount of drugs I was taken - I even had to write them all down!.
I am more of a savoury person but my go to treat I have to confess during chemo was Hagan Daas salted caramel ice cream and the odd tipple as and when I fancied it. I do try to eat as healthily though as I can - lots of fruit and fresh vegetables - the lady that used to do my shopping during lockdown always commented on my 'healthy' list.
I didn't go out Monday but to make you laugh, I did venture out after work yesterday to pick up a delivery at M&S but thankfully had a waterproof on when Storm Francis decided to drop rather a lot of rain on us!
I am here too for whenever anyone wants to chat - the one thing I know would have helped me would have been to attend some f2f workshops etc but of course Covid stopped that but having these forums, some of the online stuff that is now starting to come through is a help and I will embrace anything that is available with likeminded individuals.
I'm so sorry you've hit a low, but just to reassure you....yes, yes, yes-it *is* normal. One of the things that I was reminded of throughout my own treatment was how connected our minds and bodies are. So, if you think about what your body has been through-it is not surprise that it is affecting you mentally/emotionally. And of course that will mean that you no longer look forward to, or have the energy to go walking. Whereas you may have been in good health, good physical shape prior to surgery, chemo, radiotherapy, hormone therapy-or *whatever* your treatment involved...the effects of all of the above certainly do take their toll. The duration of treatment will also affect how you feel-if your "journey" began months ago...you may also notice a decrease in your ability to tolerate the emotional impact, as the days pass. It's hard to stay strong mentally and physically throughout the entire process. You're allowed down days. It is perfectly normal and to be expected. I'm pleased to hear you are able to work from home and are still managing that-I'm assuming that is also helping to give you a sense of achievement. That's important.
I think that one of the best pieces of advice I could give you re-your fatigue levels, is to listen to your body and do things that have the potential to make you feel better but don't *overdo* things. I'm a very healthy eater (most of the time) & I eliminated sugar as soon as I was diagnosed and realised sugar and cancer are not friends. But during my radiotherapy treatment-I treated myself to a vegan donut (on 3-4 days out of the 20) just to get me through and as a reward to myself:). A bubblebath (if you're allowed taking one) may be another idea, or sitting down a reading a book you've been wanting to read, or listening to some music. But just listen to your body and treat yourself with kindness. Maybe *shorter* walks? A 10 mins. walk is better than no exercise at all, but on a day like today (Storm Francis) you have my permission to stay indoors:). As you said, nobody, but nobody can understand the physical and emotional impact of cancer treatment. My hormone therapy (which I will be on for 8-10 years) has had a real effect on my mood. I'm not the bubbly person I used to be. It is *awful* but I've had to train myself to get used to it-because it's saving my life. As my surgeon once said to me-this hormone therapy is more important (for my type of cancer) than the surgery-the surgery gets rid of the tumour but the hormone therapy stops it from returning and from growing.
I'm sending you lots of love and am so happy for you that the radiotherapy will begin in just over a week. It will be over before you know it....it really will.
I'm here for whenever you need a boost!
How are you doing?
I have my radiotherapy (5 sessions) confirmed for the 3rd September and am also awaiting genetic testing.
I've hit a real low/tired spell - is this common - I've been on google (of course) and they talk about post treatment cancer fatigue and I pretty much fit all the boxes - lack of energy, appetite, not wanting to do things I love (for me one of those is walking) and generally just feeling not myself. I've been like this before and usually lasts a couple of days and then you bounce back again for a bit.
Thankfully I am still working from home so can get on with work quietly in the background on the sofa with my laptop on my lap - not ideal but means doing something,
I think this forum is great for sharing how we are feeling and realising we aren't alone - sadly I think until you have been on a cancer journey, you can't understand what it is like and add Covid into the mix, and it is just that little bit tougher.
Thanks very much for sharing your experience here. It has definitely helped because the more that we open up and share, the more we realize we’re not alone. I’m just over 2 months post radiotherapy, and end of treatment and I *am* feeling much better, but as you so rightly said, there is still so much to work out and process....all in time.
I wish you well with the remainder of your treatment and here’s to *not* jumping for joy!!!
Reading this spells out how I feel and I totally get it.
I am 7 months in, chemo and surgery done (all in covid except for the first 2 chemos) and radiotherapy left. The chemo killed the tumour and after surgery results were clear but after surgery, emotions like you hit hard.
After chemo finished, it was like I lost a lifeline, no picc care, bloods etc and regular appointments. Yep glad chemo done but that family had left me.
After surgery once drain out and dressings off, nothing until I see my oncologist.
I had heard this happens from others so I reached out to this charity and have had helpful chats with one of the nurses and a someone like me volunteer.
Friends feel I should be jumping for joy, I feel I need to work out what has happened.
I hope my sharing has helped, yours has.
Thank you so much for contributing to this thread-I'm so pleased you have found it helpful. I can only imagine what it has been like for you to have gone through your own treatment as well as being front line NHS! I take my hat off to you. And thank you for all the hard work you do on the front line. You are absolutely right-receiving a diagnosis is hard enough, but receiving one during COVID must take the anxiety to another level. Thankfully, now that we're used to the new normal and wards are also used to it, anyone diagnosed now will hopefully receive the same seamless treatment I did, and I hope you did.
This is no doubt a tough time to be recovering-I was unable to "celebrate" the end of my breast cancer treatment because I have been social distancing and I live alone. Hopefully the time will come.
Best wishes to you, and hoping you are taking each day as it comes.
So happy I came across this forum and particularly this message. I am 11 weeks post radiotherapy and can completely relate to Emotional meltdown. Although I have been advised by the nurses this is completely normal It is not quite the same as reading on here from people who have gone through a similar journey.
I think obviously more difficult for anyone being diagnosed with cancer this year.
It is difficult enough to be faced with all the thoughts the diagnosis brings.... to then finish treatment with hopefully a good prognosis.... but then have covid-19 to worry about.
We have been through enough already and it's all just too much.
On a positive note I am gradually feeling better but will be taking all the time I need and have no idea when I will be returning to work as I am frontline nhs.
I'm replying to my own thread & message with an update: it's now July 2nd & whilst I am feeling better than I was when I posted my original message (immediately before my radiotherapy finished)-I'm still not "me" and suspect it might be some time before I feel like myself again. For so many reasons, the Letrozole being the main one. Having said all this, and bearing in mind that I *am* a psychotherapist; I've decided to take a Sabbatical from work and give myself a few months, possibly a year, give or take, to do the things I don't get to do when I am "therapizing" others. I wish more people, including our own healthcare teams, and other breast cancer patients/survivors understood that we are all different. Our cancers may be different, our treatments may be different, and even if the above are the *same*-*we* are all different, and what might feel easier or more difficult for one, may be a totally different experience for another.
Having spoken to other women who have completed or are still in the throes of their treatment, one of the "themes" that I have picked up on is the tendency to feel patronised. Patronised by friends, family, some of their healthcare team, & sometimes by other women who have breast cancer or who had breast cancer.
My message to all is that we really need to be more mindful of *how* we say things, and *what* we say to others. The roller coaster of emotions that one experiences when they undergo cancer treatment (any cancer treatment) cannot be overstated. And for so many different reasons. Some of us tolerated the treatments well and managed our anxiety well re-treatment, but the volume of appointments got the best of us (the constant interruption to our own work schedule). Others might cope less well with their treatments but found the volume of appointments manageable. We are all different. And we all have our own personal reasons for feeling the way we do, and reacting the way we do. I just wish those in our closest circle (including our healthcare team and other cancer patients) understood this better.
I am not the fastest at replying to messages, but I did want to extend my offer of support to anyone feeling unsupported right now. It's one of the worst feelings you can feel, when going through such a difficult time. So please feel free to reach out and message me-preferably here, on the forum, as opposed to a private message, so that others can benefit from your experience & the input of others, too.
Thank you so much for the thumbs up on my post. It's so important that we *do* raise this as a topic, and for our loved ones to understand that it's not necessarily a therapist that we want or need (& may even already have)-but that we just want to feel validated & understood by our loved ones. A therapy session once/week cannot take the place of having understanding, empathic & kind people around us.
I agree with you-the article by Peter Harvey is excellent and oh so validating. It should be a must-read for anyone with a friend/family member/colleague going through or just finishing cancer treatment.
It's reassuring to know that you understand and related to my post, but I am sorry that you do-and I am sorry to know that you are so tearful in the evenings. You describe it well-we are strong during the day, because we have to be-and in fact, keeping busy does help push those emotions "down"-but come evening, when we are either alone, or in the shower, or lying in bed...the tears fall. And we all must understand that this is "normal"-it's not a sign of madness, or that we need therapy (though therapy can definitely help). But above all-the emotions that we feel are all normal.
I spoke to a family member earlier in the week-someone I hadn't spoken to since the start of my own treatment. It took them 35 mins. to ask me how I am. I was struck by how little they were in touch with how I might be feeling, etc. I have made the decision to take a few months off work-starting in August and what I would love to do is to write a blog (maybe just an article) on the do's and dont's re-what we *need* when we are going through, and finishing our treatment. So many fail to understand. And that's fine. I don't expect anyone who hasn't gone through this to understand. But I am honestly struck by the lack of common sense that many have:). What about just "how are you"? "would you like to talk"? "do you *need* to talk"? "what can I do for you". It pains me that these questions do not come naturally to people.
My own therapist helped me realise that when some friends/family say "if you need to vent, I'm here"-if this is said with a lack of genuineness (& yes, we can all differentiate between those who mean it and those who don't)-we are less likely to open up if we think they are just saying it to be nice, or because that's what they think they ought to say.
What I've learned about my own family and friends over the last 21 months is this: some people just can't tolerate negative emotions. They just want everything to be "fine". They *need* everything to be fine. And some of them can't cope with me/you being ill. And so by not speaking about it-they can pretend it doesn't exist. I could write a book on this:).
Thank you so much for your well wishes-I wish you all the best for your radiotherapy...if you have any Q's just fire away-I finished mine two weeks ago and it's all fresh in my mind:). And re-hormone therapy...I'm on Letrozole so if you have any Q's...again...just ask!
Let's keep the emotional dialogue open. We should not feel "shamed" for feeling low, tearful, uncertain, irritable, angry, whatever-all of these feelings are normal and valid.
I also want to say (depending on where you are in the country)-if you'd like a coffee buddy-when we are allowed to go to cafes...I'm more than willing!
I've read this thread about low mood at the end of treatment and think I can relate to the points about not just being able to snap back into 'normal' and how others go into 'reassurance mode' when what we'd really love instead is to be listened to (not given 'solutions' or told about their 'friend who had something similar'). This whole experience has certainly made me think about how I've responded to people with cancer in the past and how I shall now respond to them hopefully with more understanding in the future.
I've had chemotherapy, then mastectomy and now I'm awaiting the start of radiotherapy and this has been going on since September last year (although the chemo didn't actually start until the end of December). I knew from the moment I found the lump that life would never be the same again, and when treatment ends I shall still know that. The first two parts of treatment were so essential that I got on with it and emotionally did fairly ok, though there was much weeping between surgery and the consultation giving results of the surgery (which were good). Now I'm approaching the last laps - radiotherapy and hormone treatment - I'm starting to think about what it will be like to go back to work, or just to go to a cafe once Covid restrictions are less restrictive. I have no idea how I'm going to do these things because since last September I've been living moment-by-moment. The recommended article in this thread summed up all these feelings very well I thought.
I keep busy during the day and often cry at night, when feelings I didn't even know I had then seep out, as you say with tears falling even without active sobbing.
I wish you luck with everything and thanks for raising this subject.
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...
Update as of June 11, 2020: I finally heard back from my original breast cancer nurse (she was off when I first contacted her)-she was incredibly sympathetic to how I was feeling and suggested we have a phone call-we did, and I felt so much better for speaking with her.