I had stage 1, grade A endometrial cancer all fixed with a radical hysterectomy. No follow-up treatment needed and discharged from the clinic a month after surgery. It feels like cancer didn't really exist, and it is hard to even say out loud that I had it. I am incredibly lucky and I know it. Yet, 3 years later I am trapped in an anxious cycle wondering when and where it will come to next, will I catch it early again next time, or will it ravage my body without me even noticing, and did they even get it all in the first place!?. 3am panic attacks are becoming the norm, as are a racing heart and imaginary lumps. My whole body aches and I feel like I have failed to bounce back and become my old self, or even a brand new me, like I should have!
I don't talk about it, I don't want to make a fuss as my cancer was a mere blip that lasted just a few weeks. I don't want to take time away from resources that are needed by people far worse off than me. My family and friends were just relieved it amounted to nothing and it feels like I am being dramatic if I even mention it.
How do I stop feeling ashamed, guilty and scared and just stop thinking about it so I can get on with the life I am very fortunate to have? Feel like I'm driving myself mad!
Welcome to the forum, although I’m really sorry to read how you are feeling at the moment.
The main message I would have is to be kind to yourself. My personal view is that our experiences shape the people we are and it is important to embrace the difficult emotions as much as it is to celebrate the positive ones. You can’t undo getting cancer unfortunately, it is a permanent part of your life experience. But feelings of shame, guilt and fear, whilst normal, don’t need to take over. For me, those feelings come from a too heavy focus on the past or the future, and my best advice would be to try to focus much more on the present - the here and now. You can’t change the past so whilst it is an important part of who you are, it is best to accept that it has happened and in so doing let it go and let it be. The future remains unknown and unknowable - which can be scary but it will very likely not turn out how you are currently imagining, so it could be a bit of wasted energy and detract from what you can experience and enjoy right now. In my experience, these things take time to process (and don’t follow a linear trajectory) which is why I say be kind to yourself as you are working through them. If you think over-thinking is your problem, then distraction has always been the best tool to stop me - is there a project you could throw yourself into? Something to immerse yourself in that you really enjoy that would take your mind away from ruminating about the past or worrying about the future?
I really hope this helps in some small way.
All the best
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Thank you Greg for your kind words.
You are right, focusing on the now is something I struggle with. Just worrying about the what if all the time.
A project feels like a good idea.
Take care xx
Just to add to Greg's great reply we do also have our Womb (uterus) cancer group where folks who are on or have been on the same journey as yourself hang out and support each other, so worth a look see.
As with Greg, living in the moment is very important as the future will come along at some time but we can not control it, but we can focus on the 'gold' that is around us right now and enjoy what ever that is.
The post treatment journey as lots of twists and turns but this great paper helps to unpack the milestones of this part of the cancer rollercoaster, make a cuppa and have a look.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
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Hi Jelli, I found this group out of frustration with the lack of support for people in our situation. I'm in Australia and have had Stage 1 Adenocarcinoma lung cancer which was fixed with a lower lung lobe lobectomy. I have never smoked and the tumour was discovered as I had pleurisy and it showed up on a scan. Same as you I had no follow up treatment post the surgery. I am 7 months post surgery and have not returned to work as I am not physically or mentally strong enough. I've had other tumours identified and biopsied, fortunately they are clear, but the stress and anxiety of the test and then the waiting is all consuming.
I feel exactly like you, I'm extremely lucky and grateful but very much overwhelmed by the thought of of cancer coming back. I have flashbacks and don't sleep well, I struggle with anxiety with every scan. I used to be a confident and positive person and now I'm someone who is depressed, cries often and struggles to function on a daily basis. Whilst I have a supportive husband and family, they seem to think I should be ready to carry on as normal. I was committed to having a better life post the surgery, based on being thankful for the chance, but I feel like I'm wasting it by being frozen in this loop of sadness and anxiety.
One thing I've really found frustrating is the lack of support from health professionals once you've had the surgery. Whilst I'm very thankful I didn't need any follow up treatment, this also means I don't have a care team working with me to navigate my recovery. I find it interesting that on the other side of the world the issue is the same!
I wanted to write to you to let you know you are not alone in the way you are thinking or feeling. I've tried to fill my time with projects and activities, Covid permitting!! But it doesn't take away from the thoughts in my head that seem to stop me from moving on. I am so sorry that you are feeling the way you are, but I was so glad to read your story and realise I'm not the only one who feels like this.
I am sorry I don't have any answers for you, except to say that I completely understand how you feel. We are not mad, we are recovering from a significant traumatic event, we just need help to surf this crazy journey.
Thank you so much for posting the link to Dr Harvey's paper. It is the best description of the post cancer journey I have read and touches on some points that I am feeling 7 months post surgery for lung cancer. I found it really helpful and comforting.
G'day Jatz although must be evening there.
Warm welcome to the Mac Community - Bit of an open house here so there are probably other Oz members lurking around
If you haven't already check out the link Mike Thehighlander has placed in his message above... Scratch that just noticed your new message about reading it
It helped us get our heads around what the heck just happened as well...
You can adopt J's mantra if it helps -
"Don't Miss Today's Sunshine Worrying About Tomorrow's Rain"
Hugs from way up here, G n' J
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It really helps us all when replying :)
Hi Jatz, good that you found the paper helpful, it helps pigeon-hole some of the thoughts and develops order.
I do always challenge folks to become proactive after reading through the paper and using it as a vehicle for change and life improvement.
So get some sheets of paper and put pen to paper - it is a good way forward.
So a page per subject heading. Start detailing the things you have done already to move life on in each area and then start to set some achievable goals to work towards.
When you achieve the first goal on each lists, tick it off and then put a new goal at the bottom of the list. By doing this you can actually see your progress and celebrate achievements. When I say celebrate I do mean giving yourself treats and gifts........ you have life - celebrate it.
The headings would be:
What steps am I taking to regain trusts in my body?
What steps am I taking to regain trust in myself?
What steps am I taking to overcome living with uncertainty?
What steps am I taking to deal with the world?
What steps am I taking to regain mastery and control of my life?
Try it, the future is sitting in front of you - think about driving a car. The big windscreen shows the future, the past is in the little mirrors and is getting smaller and more fuzzy as we move forward.....if you concentrate on the past you crash.
Crikey, thanks so much Mike these tips are incredibly helpful. I wish I had found this group earlier, but maybe its happened at the right time for me to embrace these ideas.
Yes its beautiful sunset time here in Australia
Thanks for the welcome, I'm so glad I found you all!!
I love the mantra, thanks for the offer to adopt it, I'm grateful.
hugs from Oz,
Jatz, post treatments, all we see is a big mountain.
How do we climb it?....... do I have the energy or even the motivation to climb but the view from the top is great. Follow this LINK and tell me what you think.
Whatever cancer throws your way, we’re right there with you.
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