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Beating Bowel Cancer Community

Life with bowel cancer

GD1962

Alternate Reality with BC

Hello,

Has any BC patients experienced at any particular time frame of their journey that they enter an alternate reality in their life. That is, now about six months after diagnosis, through chemotherapy and at the surgical intervention phase that your thought process and priorities change.

I feel that I am someone looking into another person's life, surgery, uncertainty about life shortening disease, and concerns about will your partner be all right if you are not there and have you made sufficient financial provision to ensure that at least they are not financially bereft and that the mortgage is paid off and they have some money as a fall back after your death.

I get up go to work, drive to work and deal with everything as if nothing has changed. I think the penny has finally dropped that I have a life threatening condition and although it is a bitter pill to swallow, am I wrong not to be in a state of blind panic. I really just don't know but perhaps I am kidding myself on that I hope and pray that somehow I may come through this weird experience .

I have started reading mindfulness books and booking retreat before surgery, as I think I will need to mentally prepare myself for the next phase of this journey.

Best wishes all :x::x::x:

Lizalou

Hi @GD1962

Just a quick reply, you write so eloquently and I know exactly what you mean...

I felt that there was the usual, normal 'me' and another 'me' with a life threatening illness. How does that happen?? Then we forget for a little while and remember again....another jolt as we readjust!

Incidentally I am still looking for things then realising that I have thrown them out in a fit of tidying, sorting and clearing.

And struggling with Christmas and the 'stuff' that goes with it (that will be a whole other thread)

GD1962

Hi @Lizalou

Glad that we have some congruence with our experience, but my hope is that I'll gain more knowledge in terms of coping skills as time progresses with this experience. Difficult to envisage a plan ahead, but just getting through the CRS and HIPEC are probably a good place to start.

Thanks for the reply :x::x::x:

Mum37

Hello @GD1962 I often feel as though I'm having an out of body experience, like I'm looking into someone elses life, but it's mine. I think your brain can go into overdrive with all the different thoughts and worries. I used to be really worried about finances as have no life insurance etc but now I've just accepted that this is something I can't control and with only so much room in my head it's not a priority to worry about. I think counselling helps and have also tried meditation and mindfulness. I think being accepted for surgery is a huge step and like you say you need to focus on preparing for that. I hope the retreat you have booked in wonderful. Do you have a date for surgery? Keep us the positive thinking :x::x:

GD1962

Hello @Mum37

Thanks for your reply that is really thoughtful, no dates so far and as you say positive thinking and one step at a time........:x::x::x:

Lauren5429

Hi @GD1962 I totally understand where you’re coming from, although I am not a patient, I struggle with watching my husband going through this. I regularly find myself wondering if I am having a terrible nightmare, still can’t get my head around where we are and what we’re having to deal with. I literally take each day as it comes and struggle to plan anything ahead or remember what we did yesterday - it’s really strange. I guess cancer can be so all consuming that it really is quite difficult to function like a normal person.. so many questions, what ifs .. I try to keep everything “in the moment” and enjoy as much time as possible with my husband. Sometimes I do forget for a few minutes that we’re in this nightmare. Actually the worst time is when you wake up and then you remember what you’re going through and it’s like someone punching you in the stomach.. that was worse during the early days but now we’re almost a year and a half in, that’s eased a little.. I’m learning to live with cancer between us. And we’ve learnt to live between scans. It’s a very strange way to live your life. In other words what I’m trying to say is that I understand where you’re coming from and you aren’t alone! :x::x:

DianeS

Hi @GD1962 I totally agree with you, and have exactly the same feelings. I was struggling to move forward, and paid too much attention to the gremlin sitting on my shoulder constantly feeding me ‘what ifs’. I’m currently trying hypnotherapy to cope with this, but still slip back and question where Iam right now. I’m currently being monitored every 6?weeks with bloods then a scan, so I never really shake off the helpless feeling. I’m sure we will all agree with your post z😩😩 :x::x::x:

Lexi

@GD1962 Perhaps you thought you may not get to this operable point! Even positive news can knock us off the balance of where we thought we were going, it really does make you realise that life is a gift and we learn not to take it for granted, I think you must hope to get through this thing and keep looking forward, try not to worry too much about finial stuff, I bet your partner would not want you too.
When I was in despair you gave me hope and inspiration and I will always remember that!!! Xxx
So buckle up!

Kathy L

@Lauren5429 I too am 18months post my husbands diagnosis and seem to live in an alternative universe with a life of stress and anxiety and occasionally flip back to the one with life we once had. Trying to live in the moment is difficult and making plans for the future.......we don't go there. However, I found I could live with the cancer once I started looking at it as a "long term illness" much like MS or diabetes that also require lots of medical intervention.
As we can't do too much due to Pauls tiredness we have concentrated on sorting paperwork, and downsizing our 35 yrs worth of belongings which in itself has been therapeutic, but @Lizalou also annoyed at time spent looking for stuff that I thought I wouldn't need again!
It seems that we have withdrawn from the outside world. (Mostly due to lack of energy) we don't fit in with the activities we used to have with our friends. Strange that I don't miss it, but getting to this point was hard.
With love to you all. Kathy :x:

eyeofthetiger

@GD1962 I feel the same and for me it is a subconscious coping mechanism. I have found the psychological and philosophical aspects of dealing with the uncertainty of Stage 4 diagnosis harder than the physical impact of 2 major surgeries and chemotherapy. Having being given good news that I am NED at this moment in time and the optimism it has generated in family and friends, getting a balance between positivity and realistic expectation of recurrence has been a new challenge. In the past, I had an illusion of control in my life and my cancer took that away and filled it with uncertainty. I now realise that even though I don’t really have control over how my cancer will behave, I do have control over my thoughts, feelings and actions and I want to be happy so I try and do the best for my mind and body. I hope you get a date soon and thank you for posting, its good to know that we are not alone in trying to find the new normal. Sending you lots of positive thoughts :x::x::x:

rebeccao

Hi @GD1962 , I try to live with my head in the sand! I manage it most of the time and just focus on keeping busy (as I see you do). My really good friend who is a doctor told me that my head wouldn’t be able to manage juggling everything and all the knowledge and would find a way to cope! Ostrich for me! But there are always times when it creeps back and yes, then sometimes it is like it’s happening to someone else.
This forum is brilliant for this kind of thing as we can see it “normal” if there is such a thing nowadays. Keep talking and much love and support being sent your way :x::x:

Clancy

Hi @GD1962, I too plant my head in the sand as Rebecca does. It only comes out when people ask me, what next? When is your next resection? Then I start overthinking things and have a few gloomy days. Perhaps you have been taken aback because a few months ago you were gearing up for the Christie appointment, and now you have positive news, which I am delighted at.
One thing I am guilty of, I tend to think, I will do this when chemo finishes or when I have my next resection. Then I realised, Ann-Marie you are not living your life! Do it now.
I wish you the very best.:x::x:

Michaels Mum

I think the worst time is when you first wake up in the morning and it is a few seconds before you actually remember it all.....:x::x:

kim74

@GD1962 you put it so well, it is almost as if we lead two lives. It is the uncertainty of our future I think that makes us feel this way, doing the day to day stuff people assume we are doing well and coping, but inside we are worrying about just about everything, with me it usually about time. I live in hope that better treatments come along to help each and everyone of us live with this awful disease. This forum is a great help, you can unload your anxieties, and someone will always come along and post something that you relate to.
Best wishes
Kim :x::x:

GD1962

Hello @Michaels Mum @kim74

Thanks for your replies and I concur with you both on our shared experiences....:x::x::x:

Lauren5429

Yup totally with you on that one @Michaels Mum .. morning’s are the worst.
That’s a good way of looking at it @Kathy L - as a long-term illness, I still haven’t managed to get my head around that one but maybe one day. For now I just float from one day to the next not looking ahead! :x::x::x:

HH79

Hi @GD1962 that’s an interesting post and yes can concur! I think it’s a normal coping mechanism to help keep us ‘sane’ by almost distancing ourselves from how horrid stage 4 is. I call it busy denial! And also now you’re looking at operable options, that can feel strange after fearing poorer outcomes previously. When I was briefly NED those few months felt very odd after trauma before and it’s natural to feel the ‘what if I am ok long term!’ real hope and optimism with surgery which even if isn’t curative should help longer survival than just chemo only. We live in such a strange world, literally never know what is round the corner and such a complex and unpredictable disease. Keep busy and distracted and enjoy time doing things you enjoy before surgery and seeing the people that keep you positive lots love :x::x:

GD1962

Hello @HH79

I must admit that I have probably been lucky so far, surgery will be a new experience and people on the forum that have been through it have given me reassurance that it is doable. As far as I am getting on ok most days and will be preparing myself with HIPEC and CRS. If it gives me more time then that is a great benefit....

Best wishes :x::x::x:

HH79

Hi @GD1962 yes lots of here have had good experiences and recoveries from hipec haven’t they and as much time as possible is all we all want, it’s amazing how cancer changes us and those without cancer just have no idea (as I didn’t!) how lucky they are! You can certainly do the surgery look how far you’ve come and all positive / long term outcomes are in your future lots love :x::x: