Does anyone get to the point where they become so overwhelmed on this journey that they need to escape people, hospitals & everything before they crack up?
Well that's me in a nutshell. Over time is soooo wearying getting 'how are you' messages, although we know people mean well. The constant treatment and side effects, feeling exhausted,ill and trying to get through daily life are hard enough. It's so difficult to say to loved ones and friends please leave me alone 🥺 it's a part of being someone with cancer that managing others becomes part of it too.
Who else has felt this way? What have you done to manage this? I get so frustrated as I have little energy to do much of what I want to, seeing everyone get on with normal life, I feel isolated and sad. And any contact is all about cancer. It can't be easy for those around us and I probably sound selfish, which I'm truly not. I love my family and my friends 🧡 . It must be so incredibly difficult for others to know what to do, or do things they think I'd like,that don't help atall.
I'm not usually a negative person, but when in pain (my cancer continues to spread) everything is hard work.
I have decided to book time away on my own somewhere quiet and rural and will let you know how it goes.
Much love to you all x
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Kazzh
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Hi Kazzh, I’ve felt exactly the same as you, but don’t have any answers unfortunately. I know I should be extremely grateful for the loving concern of everyone around me as there are many amazing people who have to face this alone. I’ve come to believe that this is maybe a sign of depression?
There are days when I just want to hide away from everyone and not answer texts or calls asking how I am. Invariably now I just smile and say I’m fine because of the desire for ‘normality’ and not to talk about C, & health issues. It’s been the dominant thing for 3yrs now for me and although NED at moment I still suffer chronic fatigue. Often feeling my life has passed me by I will never be same again.
However there are good days when I’m not irritated by ‘another’ enquiry how are you, so I hope if you get a wee break you’ll feel stronger and able to face people again. If not perhaps you should speak to GP as it may be depression.
Will be thinking of you along with the rest of you lovely ladies in the same boat,
Firstly, I am so genuinely happy you are still NED, that's amazing! I'm keeping everything crossed for the future for you 🙏🤞I understand the fatigue, it's totally debilitating. There's so much I want to 'get on with' but simply can't. I have put myself down for counselling but there's a wait everywhere it seems, I will chase it up, but tbh I have had so much chasing up to do with errors made by my oncology team, by my work HR (wrong pay, so domino affect on benefits etc) I don't even know what treatment I will have next as chemo isn't working 😳 I'm also exploring alternative medicines options to try & help myself. It's hard to know what to do for the best.
Anyway, thank you for your kind words, I'm away now staying on a rural farm in a cosy cabin hut by a lake (I sent my post a few days after I wrote it, to confuse matters!) Despite feeling ill, It is just what I need, it's a whole week of total relaxation 😌 xx
Hi Kazzh, I don't know how good it is, but I've heard that Macmillan do 6 free Bupa online/telephone counselling sessions, which might help while you're waiting for some in-person counselling? Enjoy your break, it sounds amazing xx
Hi Kazzh, I have just finished 4 free hours of counselling through Macmillan. The counsellor was excellent and I had the first session within a few days of contacting them. Definitely worth doing. Wishing you all the very best. Xx
I’m so sorry you’re going through such a difficult difficult time. I pray that you find calmness and a treatment that works. Have you tried immunotherapy (ipilumab/nivolumab or other)? Studies online say immunotherapy and targeted therapy work better for OCCC. Wishing you the very best and sending prayers your way! 🍀
Hi Kazzh , I too was the same at the early stages of my journey. I agree with Alpacalama that it maybe a sign of depression as I too didnt want to text or speak to anyone. You are trying to process what is happening to you which is very overwhelming. I hope you enjoy your break and it makes you feel more positive.
My best friend has clear cell that has spread to stage 4a (possibly 4b) within a year of diagnosis. She’s overwhelmed and finding it hard to be herself and live as normal a life as possible. Her chemo for recurrence was postponed due to illness, she’s been in and out of hospital for respiratory issues, as the cancer has spread to her lungs, as well as for chemo, scans etc. As a friend, I worry if I don’t hear from her each week, but am aware that she needs time on her own to try and process what’s happening. Thank you for the reminder not to start every conversation with ‘how are you?’
It’s ok to want to run away (insert lyrics to Tainted Love). It’s ok to want to crawl under a rock at times. OC’s a bitch, CCOC doubly so.
My OC hasn’t spread, I consider myself lucky. However, I can still feel overwhelmed by work, family, friends, hospital. I recently spent a couple of nights ‘off-grid’ in a solar powered shepherds hut in a relatively remote area. It was the re-set I needed. A good book, cheese, dark skies and autumn colours were good for my soul. I recommend it.
I can truly identify with your friend, mine has also spread to my lungs, and I spent time in hospital with bowel obstruction and then a chest infection. Ofcourse everyone is worried, but I don't have the energy to reassure everyone and do ask that messages not needing a response are usually the best, like 'thinking of you, here for a chat whenever' that kind of thing. A simple 💖 reply shows I'm acknowledging them. My closest family & friends know this but naturally they want to spend time with me too. Maybe after my reset I will feel a bit different. Funny you mention your stay in a hut, that's exactly where I am but for a week, by a lake, put in nature & slowly feeling a little better 🙏🥰 (my post was sent a few days after I wrote it) I recommend it too! Xx
I have been knocking back clear cell OVCA since 2008, and have had a few recurrences. I’ve had various chemo’s, radiation, and Avastin. All kept things at bay for a time. I am now on immunotherapy (Opdivo-Yervoy, and now just Opdivo ), which is slowly shrinking 2 tumors on my Psoas muscle, and keeping my CA-125 levels down. Maybe explore this option? Hugs. ❤️
Can I ask what stage you were originally diagnosed? Being 4b OC means options are so limited. You have done amazing so far 👏 Are you in the states as the drugs you mention arnt available in UK I don't think? I'd be happy to try anything tbh, it's just knowing what is available and likely to work xx
I was wondering about you the other day and how you were doing and now I know.
I’m so sorry you are feeling so bad but it’s hardly surprising given what you’ve been through and being NED for such a short amount of time. You’ve been dealt a rotten hand and being in pain is very consuming and draining.
I hope you know that this is a safe place to vent with no judgment.
As I’ve mentioned before apart from having had OC myself I was the daughter of someone with OC so have been on both sides and it is hard being the loved one looking on but your feelings are still valid.
Have your time away and see how you are feeling when you come back. I wonder are you having counselling?
Thanks Jen. Yes 3 weeks NED, then more surgery, more chemo. It has been relentless and I have to effectively manage my team who have been negligent to say the least, yet I don't have the energy to challenge it. My family sat 'tell us what you want and need' but sometimes I don't really know. I live alone and am used to me time but my mum doesn't get it because she is very needy. I am looking at counselling, I need to prioritise this. I'm usually so positive and upbeat. Hope you are doing OK? Xx
You have been through such a lot, it’s cancer it’s not the flu you don’t just get better and move on but that’s what people want to be told as it’s easier and neater that way.
You do what’s best for you in whatever form that takes. You are obviously very strong and independent and people need to understand that just because you have cancer you haven’t changed your personality. Try to get people to understand your boundaries, but also let people check in on you as they probably feel a bit helpless.
I really hope this break away gives you what you need.
Hi Kazzh, I don’t think you sound selfish or negative at all, you are living every day with the physical pain and emotional trauma that comes with your cancer and continuing treatment . It’s completely understandable that at times you want to get away from it all. When I was feeling overwhelmed I did speak with my GP who did help me think through if my feelings were depression or a usual response to my cancer and treatment. I know that since my diagnosis some relationships with my family who are amazing have changed . I can cope with empathy, but struggle with sympathy . In times when I’m struggling I try to communicate at a time and approach that works best for me and let those who care about me that’s how I will be responding. I think it’s ok to not be ok and good to find a safe place and space just for you to reflect and process what you’re going through. There is always the helpline numbers that I’m sure you already know about , Maggies centre and of course here if you want to have get it all out of your system. Best wishes Kazzh , and do keep in touch. I hope you find a peaceful retreat somewhere beautiful. You are amazing and deserve a break from it all. Xxx
Bless you, thankyou. That's a great way of explaining it. Empathy is fine, sympathy & fussing and offering help all the time is coming from a kind place but is too much! I'm enjoying a peaceful retreat for a week in s cabin by a lake in the countryside and am gradually winding down 🥰 (my post was written a few days b4 I actually sent it) xx
Awww, you know we all have this in common, some to a lesser or greater degree. I'd so like to be able to gave a group meeting with you all. Perhaps we can arrange a zoom meeting together & put a face to our names! Xx
hi Kazzh, ovacome has a zoom session on this afternoon , it’s called riding the rollercoaster: resilience, hope and the power of connection. Ovacome members are speaking about their experiences. Might be of interest . I’ve tried copying the link but for some reason can’t seem paste it in. To book, it’s advertised on their website, ovarian cancer support groups and events page. X
I think for now I will soak up nature whilst I'm here until Thursday, sun is shining now, beautiful crisp autumn day, listening to the birds and the lake ripples 😇 but I do appreciate you letting me know. I'd be interested if another is organised
At the beginning, about 3-4 months after diagnosis I felt overwhelmed to the point - this is gonna sound weird I’m sure - I got in my car and drove, and drove, and drove. I ended up in the middle of nowhere in a lay-by and I sat and screamed and screamed.... the sudden realisation that I couldn’t outrun any of what was happening to me hit me. I turned the car round, headed home feeling the calmest I had in a long time. I hit everything head on from that point. That was nearly 18 years ago and I’m still in the same mindset. Getting away sounds like a good idea. Don’t overthink things though. You are stronger than you think right now. Big hug. Kathy xx
If it works, do it! Sometimes a spur of the moment action is best. So glad it did the trick, and you are right, overthinking everything doesn't help either. Nothing & noone is perfect. Hugs xx
That is a very good idea. Everything relating to this disease takes so much energy at a time when we have the least energy. Anything that helps you clear your mind, even for a couple of hurs at a time, is worth it. Treat yourself to whatever you want, take time off for yourself. Ensure you can easily keep in touch with loved ones. They have their own battle.
Which bit is a good idea? Not sure who you are replying too! You a right, treats for ourselves are so important. We sure deserve them don't we! Interesting what you say about family having their own battles. Can you explain more please xx
Replying to you Kazzh. Going away is a good idea. Sometimes we spend time soothing others. In my case I felt I just wanted to be alone, not respond to very genuine questions/comments from relatives and friends. It occurred to me that I had not addressed my feelings at having been diagnosed with a third cancer. Colon in 1996, breast in 2018 (my husband was dying from pulmonary fibrosis and I was nursing him) and last year, when i was 79, ovarian tumours.
I continued responding to everyone around me, very grateful for all the assistance I was given, but never admitting my anxieties. That's when I realised I was holding everything at bay.
NED now, CA125 is 14. I stopped Olaparib and Avastin. Couldn't cope and didn't want to live this way for 2 years with Olaparib.
I have a friend who when she’s had a moan about life say ‘oh Ali, I’m sorry it’s nothing compared to what you’ve been through’
I used to smile and move on, but in the end I had to tell her it annoyed me and I was still me with the normal ‘life moans’!! She forgets occasionally and I now just give her that look!!
A good walk in the countryside and a really good, long scream and cry helped!!
Yep, I get that totally! I can think of many examples that annoy me but I guess the trick is learning to deal with it in a way that doesn't annoy me. I am open now with anyone who simply messages with 'how are you' .Can't answer it honestly & quickly at the same time 😳 so now I make it clear I prefer 'thinking of you, here if you need me' kind of messages that don't need a huge reply xx
Dear Kazzh You have summed up my feelings exactly just when I feel so unwell there is so much I have to do and people to see I felt so guilty this week I didn't feel well enough for two lots of visitors and had to cancel them On top of that there is all the trying to see if there are any treatment options It is all overwhelming! You just have a quiet restful break A little distance from it all will help recharge your batteries xx
I totally get it, I know when I can't cope as I cancel get togethers,then feel guilty. Trouble is,when I feel well, I arrange all these things and then cancer life gets in the way and cancelling happens quite a bit. I'm trying to do things as I go along, depending how I feel, rather than fill my diary & put pressure on myself xx
Feeling exactly like you I'm in recurrence and also managing my Husbands cancer journey no children was able to escape for 2 weeks to a lake front home in September that we've always loved felt like heaven actually was able to put the "C" word out of our minds escape from the doctors appointments, follow up reminders.
I totally get it I have well meaning Friends I don't expect them to understand this journey its frustrating today I made the decision which I rarely do to skip church and sleep in I told a Friend I won't be there today she responded what's wrong I don't go into detail any more just said I needed sleep which I did get. I'm like "what's wrong" ugh!
I am involved in my local OC group which helps there's a few gals that I've become Friends with. There's a woman in my group amazes me does solo trips mostly abroad I'm in the states has a wonderful time meeting new people comeback refreshed.
I'm glad you booked some time away I think like a lot of survivors look like they have it all together no one knows the battle inside that we're dealing with I don't blame my Friends but sometimes you don't have the energy to try to explain as they don't get it unless they've been thru something similiar.
So very true. I'm so glad you had a fantastic 2 weeks away. I'm here at my lakeside retreat for a week and it's helping me so much. I must incorporate more R & R in my life now. So sorry this is effecting you & your husband. It's like a support as you both get it, but at the same time a big worry for you, and vice versa. So tough. Loved your friends comment 'what's wrong' ....🙄🙄🙄🙈
R & R and being by water is so therapeutic . I feel in a way it was a blessing although its a journey no one wants to go thru as I'm a diligent researcher that I'm able to navigate my Hubby's I treasure every second that we have together as a gift. I'm a very honest person but at times give vague excuses why I cant attend certain things Friends are well meaning but when I feel that I need to rest and regroup I do it unless someone goes thru this not their fault they just don't get it! Enjoy your lakeside getaway sounds lovely.
Hi Kazzh,Something that was a real life saver is a friend set up a Caring Bridge site for me. She gathered all my friends' emails and set it all up so that all I had to do was write an update periodically and everyone got it at once. Maybe try that? I think it might really help. Then you're updating everyone on your own terms and not repeating yourself again and again. At first she was even writing the entries for me (so I only had to tell one person -her) but after that I started writing them myself and even had fun with it.
Dear Kazzh. Sending love and virtual hugs. I’m glad you got away and I hope it helps. Selfishly, I was glad to read your post because I am about to ask for antidepressants. I’ve always been a very cheerful person but lately I notice I lack motivation or joy for anything. And I know this the time for me to find joy. I have a small amount of cancer that stayed stable for 3 months since my last chemo but the nurse said very clearly they know there’s a lot of tiny cancer in my peritoneum that will probably show up in three months. I dread the thought of more treatment. Anyway I hope your solitude is as healing as it can be.
Not selfish atall, sometimes these posts trigger us to rethink things for ourselves. I've just signed up to Macmillan counselling thanks to the suggestions on here, maybe that's something you might like too? Love & strength to you xx
What you are feeling is normal... at times I get overwhelmed with dealing with my cancer and its side effects. I know my friends and family love me and just want to show that. I have to remind myself that they can't read my mind and if I need something specific from them, I need to tell them. "I'm feeling overwhelmed today and I really don't want to talk about my cancer." And for me getting in out in nature (even if it is just driving down a country road lined by trees) is refreshing. Sometimes I need to be alone in my thoughts and at others I need to be distracted from my thoughts.
I've also learned recently that downplaying how I'm feeling isn't good either. When someone asks how I'm doing and I say "not too bad" or something like that, they assume that all is going well. I've found it better to say "my side effects are making it hard to get things done today, but I am doing my best". I want my co-workers to know that I'm fighting through this, but that all is not sunshine and roses.
I just want to say that you are not alone and it is OK to feel the way you do!
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