Living with OC

[ShropshireJo]

Hi all. Well I had my third post chemo scan results yesterday and they show no measurable progression so I am classed as stable for now with another CT scan at the beginning of November. Consultant wasn't there but I was seen by a new very nice young woman who explained everything as clearly as she could. Had really high levels of anxiety in the weeks leading up to this. Tension gradually fading but feel more numb than happy. I feel,I should be jumping for joy that no treatment is needed yet. Has anyone else had a similar reaction? Somehow, I've got to learn to live with OC. Feel bad about moaning when some of you are currently suffering horrid side effects of treatment so apologies for rant. Love to all you amazing ladies. Jo 🌻

[Hidden]

Fabulous news for you Jo.

I feel just like you. I'm stage 3b and finished chemo Dec 16.

I've just had my 2nd follow up. I haven't had a scan since the one I had after chemo.

My CA was 4200 pre op and chemo.

This one was 13. So like you I should be jumping for joy. Don't get me wrong I am thrilled. But I still have discomfort. And bloating. So it still worries me.

Oncologist felt my tummy and said it feels fine.

I'm a worrier in every day life so this just gives me another to add to the list !!

I know so many of you are suffering on a daily basis so I need to make a determined effort now to put it to one side and live my life until I'm given something to worry about.

I hope you can try and have a fun and worry free few months Jo.

Sarah x

[ShropshireJo in reply to Hidden]

Thanks Sarah. Hope you do too. jo x

[Lyndy]

Hi Jo

Yes I know exactly what you mean....even when you get good results ( and yours were v good) somehow the worry never goes away. I don't know how to deal with it I'm just trying to accept this is the new reality and to live each day gratefully.

I recently got a new puppy who is teaching me the meaning of living in the moment ( when he isn't peeing on the floor) but I really struggled with the decision to buy him because it meant thinking about the future....x

[ShropshireJo in reply to Lyndy]

That's a really good way to go forward. Well done you for overcoming your doubts and making the positive decision. I'm hoping to get on track once my adrenaline levels have stabilised in the next day or two. Am thinking about a mindfulness course which could help prevent acute anxiety in the run up to the next scan. xx

[Irisisme]

Hi Jo and others,

I've heard that what you're going through is common. There are a number of books that might help. I read 'The Cancer Survivor's Companion' by Dr Frances Goodhart & Lucy Atkins when I was told my Cancer was "under control" and it didn't fill me with the joy I (and everyone else) thought it should have done. It may strike some as 'stating the obvious' but sometimes we need to be reminded, and it gives practical steps for coping with feelings once we have the 'all clear' - especially "will it come back" (or " WHEN will it come back") - and "will everyone think I'm ungrateful if I'm not jumping for joy".

I wish you the best of luck, Jo. Keep in touch with us here on Ovacome.

Iris xx

[ShropshireJo in reply to Irisisme]

Thanks for the info about the book, Iris. Had a quick look on Amazon and it looks encouraging.

[Lily-Anne]

I was really stressed before my scan which shows no change. I think you're right it's going to become a way of life. My GP says she now has two other OC patients who have chemo then crack on with life then back on the chemo.

I spoke to someone in the chemo suite and asked when her treatment ends. She said it doesn't she's a lifer. That scares me a bit as I really hate chemo

Looks like you've got dose 4 coming up. Had mine yesterday here's to remission 🥂

LA xx

[ShropshireJo in reply to Lily-Anne]

It's trying to find that middle course between being sh.t scared and blasé. I guess that is also part of this new reality we face. No chemo for me for the moment. But if what's left starts to grow more quickly, then I guess it's back to it for the third time. 💐

[IrishMollyO]

Hi Jo

I think most people would empathise with you. The initial reaction to being told of good results from scan is utter relief. However it is quite quickly followed by so many doubts and questions. When will it be back ? How will I know ? Loved ones breathe a sigh of relief and their heads go back in the sand . There are a few things over the last 6years that have helped me. Mindfulness and living in the now which I see you are interested in. Talking to a cancer psychologist which I found invaluable. Joining a support group in your area where you can meet cancer survivors . I also keep a journal which allows me to write out my thoughts and fears at the end of each day so that I can make a fresh start the next day. I was also advised to see my condition as a chronic disease that can be dealt with as it occurs. Of course the best thing of all is to chat to the wonderful women on this site . No matter what your question there is always someone to come to your rescue., I'm not saying that I always succeeded and I admit to falling into a pit of despair every now and then but I realise that " I must have the courage to accept the things I cannot change and the wisdom to know the difference " . I wish you all the best and I hope you will see a light of hope shining through what appears to be darkness right now . Take care

XXX

[ShropshireJo in reply to IrishMollyO]

Wise words. Thank you Molly. Deep down I know all you say is true. It is a question of bringing it up from the deep and keeping it on or near the surface. x

[Katmal-UK]

Hi Jo I pondered long and hard before responding to your post. I went for CA125 results about 10 weeks ago (having scan on 13th Sept and results on 20th) and my level was 3, previously below 3 (it bounces between the two) and as amazing as that result is I couldn't feel happy, felt 'down'. Can't explain it but can totally empathise with how you feel. I think it's because we all live day in day out with the knowledge that things can change so quickly whereas before our diagnosis we lived in ignorant bliss. What I wouldn't give for 10 minutes of ignorant bliss......I hope you have absorbed your news and are in a better place. xx Kathy xx

[ShropshireJo]

Thanks Kathy. It really helps to know that others empathise with you. It makes a huge dent in the loneliness (despite loving family and friends) of this new life., Jo xx💐

[Hidden]

Great news I am also stable for now. My junior consultant was wondering why I didn't do the happy dance!!,,Wonder do they realise that we live the fear. I do try to keep occupied doing stuff and not think Cancer all the time. For the most it works

[ShropshireJo in reply to Hidden]

Thanks. Here's to fearless days🙂

[Hidden]

it is quite normal what you describe. it is, like people said here, living in fear that doesn't let you enjoy the relief with good news. because there's no such thing with cancer as happy ending. it either bad or keep waiting for it.

I was same upon my all clear first time round, a year ago, but then learned to accept the truth that there's no other way and that's how my life is going to be.

I will die one day, I may not see my daughter go to secondary school but why worry about it now? why ruin good months I'm allowed to enjoy life with what i'll have plenty time for when time comes. I speak freely about it and not making it a big deal.

Kx

[ShropshireJo in reply to Hidden]

I appreciate your comments. I do understand. After my initial diagnosis, surgery and chemo in 2008, I was given the all clear and managed to get on with my life so successfully without that fear that when it recurred after 8 years, it knocked me off my feet. Now I need to come to terms with the new prognosis and find the inner strength to make the most of every day. Jo x

[Hidden]

I was also given all clear after surgery chemo 2006/2007 and I was more upset when it recurred 2010. But we have to live life as best we can and take the good with bad. Am stable for two years

[ShropshireJo in reply to Hidden]

That's good to hear. Thank you.