Best Of
Re: Breast cancer
Sorry you are worried .....all the way through my journey I have tried to be positive about it all......such as my mastectomy scar is something I'm proud of - I'm alive because of it ☺ same as the medication - its great despite making me feel sick and thinning my hair - it's killing any badness in me.
Once you get day one over you will feel more positive yourself ....... very best of luck - I'll think of you ❤
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Life and living after cancer...
The post was about the struggle someone was having with life and living post-cancer after all treatments have ended, but still having issues from side-effects, struggling emotionally etc. So many of the replies that followed were of a 'me too' type.
I know most of the people I have spoken with on here are either in the midst of treatment or are living with cancer as a long-term thing, so to ask for help with life 'after' cancer may seem a daft thing, but clearly from reading the fb post there are many people who are struggling with life after cancer.
I consider myself to be a newbie when it comes to post-cancer, it was only a year ago I was back in hospital having surgery due to complications with meds.
To be told that your cancer is gone, or in remission, is really fantastic news, but I think for many, processing everything they've gone through, doesn't begin until everything stops. It was that way for me, I tried to write things down during everything, and hats off to those who are able to write blogs etc in the middle of stuff, but my brain wouldn't function properly, and it was all such a whirlwind of 'be here, 'go there', 'take this' 'do that'.
Whichever order the treatment is done in, at the end of it, it does feel like being cut adrift on a choppy sea all alone in a dinghy. For many they find that family, friends, employers suddenly think 'Oh, great, you've finished treatment, now let's get on, carry on as normal'. Except 'normal' packed up and moved.
For all of us, cancer changes you or your loved ones. I'm not sure that the 'life before cancer' will return, so we have to find a new 'normal', embrace the new life ahead. The feeling of 'What now?' surfaces. I knew I was in no way ready to return to work, a part-time job in school. I was on sick-leave, unpaid, not receiving any benefits or help, money's tight. The pressure to return was immense, but it was difficult to describe how and why I wasn't ready, plus I was suffering from many side-effects I wasn't expecting. I was at the hospital waiting for an appointment, that I had the thought that it wasn't 'right' to go back, to make the change. To be honest I was nervous of that thought because I don't like change, but five minutes later, before I had even said anything, my husband looks at me and says the very same thing! Awesome!
So I resigned my position, and it was like a weight lifting from my shoulders, and I could then focus on getting stronger and think about what next.
I am a positive person (mostly, I have had my share of very dark days), and I am very thankful that the cancer I had is no longer present in my body. I try and find something to be thankful for or rejoice in each day. Cancer has left its mark on my life, obvious physical changes, bits missing
, side-effects of chemo, radiotherapy and medications, that are more long-term and harder to 'get rid of'.I count myself to be very fortunate and blessed that I have come through this and I feel I have been given a second chance at life. I am usually quite hard on myself (aren't we all!), but I am learning to be kinder to myself, take things one day at a time when necessary. This really isn't a cliché, it is the only way to approach this walk. We learn to become more flexible with plans, thoughts, ideas.
I have read many brilliant stories of people who are navigating life with cancer, they are all inspirational, amazing, showing such courage and bravery.
My hope is that this will bring encouragement and hope to others if at all possible.
The one thing people need after a cancer diagnosis, obviously apart from no cancer, is hope. Hope that it's possible, hope for breakthroughs in research and new medicines, hope that there is life after cancer.
So, I was wondering, are there others on here who are navigating life post-cancer, and it's working for you? There are a lot of people who are struggling, maybe someone has a positive story that would encourage others?
Looking forward to reading more...
Thank you for reading
Lou
Re: Looking after my hubby
Hi @Deebo
Welcome to the community, I am very sorry to hear of your husband’s illness.
I can’t advise you on this other than perhaps contacting Macmillan Cancer Support if you are UK based. They may well be able to help you with regards to work related issues when caring for someone with cancer. I believe they may be able to help you with accessing any financial benefits etc applicable for cancer patients also.
Or they may be able to direct you to the right place. I am assuming you are either currently taking unpaid leave, compassionate leave or using your holiday entitlement.
I can understand you wanting to be with your husband as he goes through treatment etc. It must be very hard, the pressure from feeling like you should be working as well can weigh heavily upon you. My husband wasn’t always able to be with me during things, his employers were very good allowing him to take the time when he needed too, but there was the odd occasion that didn’t work out. Thankfully we had some close friends who stepped in to help out.
There is a page in the Expert Guides ‘ The Live Better With Guide for Cancer Carers’ which may be helpful to you.
I am sorry I don’t have any definitive answers for you, I know there are several others here who are also caring for loved ones during cancer, hopefully if they have had a similar experience to you, they will respond too.
Caring for someone you love with cancer is very hard on you too, how are you managing? Do you have any other support ? You are welcome to chat here anytime, there is a lot of support here, everyone is very friendly and understanding.
I do hope you are able to get the information you need and your employers are compassionate and helpful.
I hope your husband’s treatment goes well and is successful. Please keep in touch, let us know how you are both doing.
Lou.x
Just a word of encouragement for all of you still going through this cancer battle...
You are amazing, strong, courageous, even on your 'off' days and even when you don't feel it, or think you are... xxx
Re: I have had radiotherapy for my third vulva cancer,
Hi @Rosegarden ,
I am sure it must be difficult to find others who have been in, or are in a similar situation to yourself. I hope some of our other lovely people here will have some insight and wisdom too to help you.
Healing is for many of us a waiting game, it's frustrating, painful, we want to be able to move forward and put things behind us, but sometimes it takes a while. But each day you move closer, little by little. I hope you have a good day today.
Lou x
Re: 'But you're OK now'
Hello Sally,
Lovely to 'meet' you, welcome to the community.
Have you just recently finished treatment? You mean March just gone?
It is wonderful that you have come through this successfully, really brilliant. It is always so great to hear good news when cancer loses.
Unfortunately, for many people when they see that we have recovered from surgery, or completed treatment, or given the all clear, they very quickly assume we will return to our pre-cancer state and carry on as normal!!
Your sense of being in mourning is not unusual and you are not alone in feeling like this.
When we are diagnosed with cancer, it is such a shock to our whole system, physically and emotionally. But often we don't get a chance to process any of it as we are caught up in the whirlwind of appointments, tests, scans etc, and everything else we have to do to be free of cancer. So now you have finished treatment, you are on the road to recovery, but it is just the start.
It is hard when we no longer have to be somewhere, or do something specific, and when dr's are not directing our every move! Suddenly it's just us, and it feels like 'Well, what now?' I burst into tears when I came to the end of treatment, and I definitely felt a sense of bereavement after chemo. Dr's and nurses and indeed other patients we come into contact regularly with during the course of our treatment, become so involved in our lives, we rely on them too, that when that connection ceases, you feel adrift.
Yes waiting for check up scans and other tests, is daunting, We are faced with the memory of what has gone before but also have to steel ourselves for a 'what if', which hopefully doesn't materialise.
It can take a long time to recover fully from the effects of cancer. If you had chemo or radiotherapy too, they also have long-lasting side-effects.
You will find others here who feel the same as you do, even if the cancer is different, there are so many similarities in the effect it has had on our lives.
I hope you will find support and friendship here, everyone is very friendly.
Chat soon,
Lou x
Re: Hello and welcome!
My name's Tamara and I'm the Founder and CEO of Live Better With. I started Live Better With almost 4 years ago to try and make day-to-day life a little bit better for people living with long-term conditions such as cancer. Having worked in healthcare for 10 years, and having seen my loved ones go through long periods of illnesses, I got more and more frustrated that there are so many tips, ideas, services, products, and more that could help bring relief from symptoms and side effects - but people don't know about them. That's just so wrong! Everyone going through something like this should know every single thing that can help them, from people who understand.
We've built this community forum as a place to help solve that. Here you'll find a family of people who get what you're going through, from whom you can get some new tips, tell your story and listen to theirs, and feel like you belong.
So a huge warm welcome and look forward to getting to know you all.
Love, Tamara x
PS Please feel free to let me know any feedback at any time on what would make this forum even better for you. My email is [email protected] Or if you just want to say hello
tamara
Re: Please can anyone help regarding my hapless husband
Hello @Driedupoldprune49 ,
Welcome to the forum. I am SO glad that you shared your thoughts with us today!
OH! The first thing I want to yell is "Come round for wine/gin/coffee - whatever your preference is. We have SO MUCH to talk about!"
I'm so sorry that you are feeling so low. It's a horrible feeling - and one that a lot of us reading this will recognise only too well.
It's SO frustrating isn't it?
Everything is SO damned frustrating at this stage of our lives - how you're feeling, how your husband is behaving, knowing what to do about any of it! Everything that is happening to you right now just blows your mind!
I'm not an expert, and I don't think I have the answer to everything (I'm still working it all out myself!) - but let's try and help you.
You have a support network now!
Here we are! No - we're not on the end of a phone, and as much as we'd like to, we're probably not going to share that glass of wine and put the world to rights with a giggle, a few choice sweary words and a recommendation for a magic potion that makes us all feel better. BUT we can listen, and we've probably all dealt with similar - and we get it.
Somehow - the mere fact that there is someone out there reading and listening to what you have to say, I hope, helps to put things into perspective and enables you to keep putting one foot in front of the other! And if all you do some days is put one foot in front of the other - then you're doing OK!
The symptoms you describe are awful - and it's hard for us as women to get our heads around them, even though we have to deal with them on a daily (and nightly!) basis.
I am in no way defending your husband (I'm really not - I'd like to shake him!) but I do often think that a lot of the time, WE have no understanding of what's happening to us, so I guess it's not unreasonable to assume that our husbands, our partners, our significant others are even more clueless! That's certainly not an excuse for unsupportive behaviour, but I can see that it's a vicious circle. You feel rotten, you have all these horrible symptoms, you want support and you need to tell your partner what's happening, but you don't understand it yourself and you really don't feel like talking to anyone anyway, so they feel isolated and angry and you feel miserable and unloved and all sorts of versions of this and similar scenarios repeat again and again..... It's exhausting! 💤💤
That's a very simplified version of the truth I know - I often wonder if men simply view the menopause as the time when women stop having periods, and for them they must see that as a great thing right? No periods - must surely pave the way for lots of uninhibited fun and frolicking in the bedroom! When that doesn't happen - I guess I can see why they might feel rejected or think you aren't interested in them any more. The male ego can be a fragile thing!
What men don't understand is that our lower levels of hormones suck the moisture out of all parts of our bodies, take the sleep out of our nights, wipes out our sense of humour, makes us cry at the drop of a hat, puffs up our bodies, thins our hair in some places and grows it where we don't want it, gives us the ability to spontaneously combust at any and all points of the day, and just generally makes us feel like bizarre cartoon versions of ourselves. It's hard to pay attention to your partner when you feel so shabby and miserable about yourself! Our self worth takes a battering too!
I promise you - it's not all doom and gloom! It does get better!
I know that you're not keen on HRT - and I understand that completely. It's a great option for some women.
There are also lots of other things you can do to help yourself feel better - supplements, food choices, exercise, mindfulness. So many choices!
I'm three months in on HRT patches, and it's made a massive difference to me, but I've also had years of treating my symptoms naturally, so I know that both ways can work. It's a question of seeing what you want for yourself, taking a bit of time, and finding the solution that works for you.
We have lots of experts on the forum. They are all really receptive to answering questions, and if you read their discussion threads, you'll see that they have lots of suggestions for all things menopause. They have helped me take hold of my symptoms and I am so much happier for it!
Please feel free to ask any questions you like - and as often as you like!
We're all here to help one another 😊
Kaz
Re: Is anyone on trametinib and dabrafenib combination therapy for stage 3 melenoma.
I have been on it for two year with no side effects blood count went low a couple of times but that was it good luck with the treatment mine has stopped working now
Angiep
Re: Fec-t
Hi Tina,
Wow! You look fabulous! I love your hat too!
Well done, half way! I will be thinking and praying for you, take it easy, rest as much as you can, one day at a time. You'll get through it.
Hugs 🤗
Lou x