I have always been a head strong, proud, positive, independent person.
Throw anything my way I will get over it!
Like everyone fought a hard battle, I had all of my stomach and part oesophagus removed. Left living with most of the symtoms I read about, no control of the
bowel.
I am 4 and half years post op.
Not proud to say I have had to finally get professional help sort out my mind thoughts. Feel like I have taken 100 steps back!
Should have got it sorted before now and admit I needed help mentally!
I don't have any reason to feel like I do now, have so much good to be grateful for.
My g.p. has put me in touch with a group called (CBT) Cognitive Behavioural Therapy. Help and work through with me and get my mind back in gear!
Hope this helps anyone in denial of it, I have never believed in it, still don't believe the anti deppresent tablets I have been taking for 2 years done anything!
My g.p. says best not come off them they might have helped! My words!
Written by
cherrybailey
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i'm 5 years post op and certainly was deeply depressed for the first 3 trying to come to terms with my new way of life.
Probably the best therapy of all for me has been meeting up with others and discussing the issues. It really does help as other patients fully identify with the problems in ways that medical teams don't.
I'm involved with a patient support group that meets monthly at the Maggies centre in London. If you ever were in the area you'd be very welcome and would meet others who have similar challenges.
There are also a number of open meetings held periodically by the OPA which are also a good opportunity to discuss your situation with others.
I know exactly how you feel, I got very depressed but felt guilty for being depressed as I had had all my cancer removed with my oesophagus, so why should I be depressed? Then my GP suggested I had some counselling, again I thought that was just for others and not for me, but I do find it helps talking to a complete stranger.
But something that has helped me so much is reading others comments on this website. I can identify with so many things and know now I am not alone, and I am not imagining many of the symtoms I have.
We have to grieve for our lost health, life style and in my case my career. Be gentle with yourself Cherry, we all deserve that
x x x x Wow wish I had your way with words!! What a comfort!! You know how I am feeling of course and you lost your career, I had to give up my business. Same thing! Comes hard!! Thank you.
Thank you Larry you have just used a few words I should have used, still after all this time trying to come to terms with my new way of life!
I have been to the odd OPA meetings here and in London.
Found them good, but don't go enough, would never mention how I feel. Find this website better for me! I know I am not alone with what I live with!
Just felt I had to mention the depression if it goes on too long, and you find nothing is helping, there is help through the g.p. Might take a few weeks my first app, will blogg the outcome. Keep your good advice, comments coming!!
I had my surgery 16 months ago. The surgery we have all had is one of the most invasive and complex according to my Consultant and like being hit by several buses! I think we have to be kind to ourselves and allow a grief for the changes in our lives. I am so grateful that I was a candidate for surgery and bless each day BUT my life has changed a lot and none of the changes have been ones I would normally embrace. And the "unspeakable" of course, the worry about the future is for me, and I would think for all of "us", something that leads to a great deal of anxiety and concern. Physically and emotionally we have been "through the mill" and life can be a real challenge on both scores. Sometimes, on a bad day, just getting through the day can be a huge hill to climb. Really hope your councelling helps Cherry.
Thank you, relate to everything you say. Why I am not happy feeling like I do after so long! Your worry about the future, I was told 70% chance it is going to come back within 3 years. Got over that mentally and emotionally, maybe I am having post natal depression.
Hi Cherry, hang in there, you sound very much like me, I am 3 years down the line and just recently had to seek psychological help and I found it very beneficial. I is such a life changing experience don't beat yourself up about it. Do take all the help and advice that you can get it does help in the long run. The trouble is we are living a new 'normal' and it takes a long time to adjust. Sending a bit hug.
Pleased the psychological help has helped you, think it will me.
Talk, talk and talk, get all my feelings and emotions out!
This word 'should' is a tyrant and a bully! We all feel that we 'should' be grateful that the treatment was successful, that the cancer has been removed, that we are alive; or that we 'should' be at a certain point of recovery by now, or that we 'should' be able to control things, etc etc. I think the word ought to be banned in this context!
I think it is perfectly natural to have a reaction after all that trauma. Diagnosis, treatments, chemotherapy, surgery, radiotherapy, telling friends and family, dealing with their reactions etc etc. At some stages every day is a real slog, and you have to keep making the effort, physically, mentally and emotionally. It is a real drain on the stamina.
It puts a strain on your loved ones too. We tend to shield them from the fact that we have just had a nasty twinge, or are worried about something. And they do the same to us. And after a while you feel you cannot keep talking about it all, going over the same things again and again.
It seems a bit indulgent to spend time reflecting on what has happened, but unless we do (hopefully not all that many times in the small hours) we cannot get used to the idea of where we are and what we have been through. It does take a surprisingly long time. And somehow the upward path towards a happier state cannot replace the downhill one until we have gone through the sometimes painful transition of adjustment. Which most of us need some help with.
I do think talking / communicating to people who have been through a similar experience is a really positive thing. I think it is like an automatic short cut to mutual understanding.
The Dimbleby Centre at St Thomas's cater for this sort of thing, and I believe that other hospitals might do so as well. It is a natural part of getting properly better, and/or getting various bis of like into better perspective.
All makes lots of sense to me to, Alan. I am not even sure if I will be a candidate for an operation. I decided not to ask until I came to the end of my chemoradiotherapy which will be in a few weeks.
The other day I met a sweet elderly lady with ca of oesophagus - the first face to face encounter with someone else with similar condition. However she has her 'lump' low down and mine is upper. She was intrigued with what liquids I had with me in my tupperware. I said this has been my lifeline for 4 months now. She mentioned she got her fishfingers stuck the other day !!! I said I could murder for a fish and a chip !! I suggested she try the fish without the breadcrumbs !! And yes, it does help a lot to meet someone else with same condition.
Hi My name is Tony I had an upper, after chemo' I had the op (nearly 5 years ago now, you can do small meals, (I used my grandchildrens plates, so it looks like a lot on your plate. I am although very small amount, eating fish and chips,( I am also back at work full time, I was a little bit portly before but now I am a hunk,I am trying to get my wife to belive that.
I too suffer from depression and anxiety. I found that counselling has helped considerably. When I speak to other survivors, I can see they are troubled too and wish there was an easy way to bring up the subject of 'feelings' as apossed to 'weight'. I am certain that many of us feel that only other survivors understand the day in day out decisions we have to make.
Such as:-
•My weight is lowering, should I try and eat more? Or will I end up with pain or nausea?
•I would really like to complete that dessert, but it might make me feel sick. Should I wait 20mins or take the chance?
•stomachs not feeling good today, what can I eat?
•would like to play with the kids today, but know I will be exhausted tomorrow.
•ate the same food yesterday without and problems, why are there complications today?
I know that many of us are asking ourselves these questions.
Having said all above, I know I have good and bad days, and learnt to accept the challenges I face. I read many self help books. One of my favourites being 'the monk who sold his farrari'.
I also imagine that there are many of us who live/work near each other. I wish there was an easy way to meet up, any thoughts?
I really liked your reply Jay and related of course. Seems like such a good idea to try and meet up with internet buddies. Not a meeting, but socially. We could meet in a central area in the country good access for us all to get to.
Partners/carers could come, them and us! ha Hotels do good deals depending on the time of year. Anyone else think it is a good Idea worth looking in to?
I am 2 years post treatment and was very depressed and finding it very difficult to get out of the black muddy hole I seemed to have fallen into. Every time an aquantaince or friend I had made along the way got ill or passed on I felt totally guilty because I was still here and not making the most of my good fortune. I found that antidepressants just dulled everything and didnt really help. I spent many days in tears and found my bed was the safest place to be.
I kept trying to get back to how I was before and it took me a while to realise it is not going to happen, not only am I physically different and have different physical limitations I am mentally different too.
The values I lived by before being ill didn't fit now and my confidence had been shot to pieces. I was a succesfull freelance manager before and now I had no job and not much chance of getting one, it seemed now I was just a cancer patient cum survivor!!
I tried various options including counseling and a life coach but the thing that helped most and has had a remarkable effect was when I took an NLP course.
It was suggested by a friend and I did it more as a last ditch attempt but having done the course and then had a full day individual intensive course I am well on the way to a fantastic 2012.
My friends and Doctors have all remarked on the way I have suddenly turned a corner and I would reccommend this to anyone caught in the trap, it was hard work and not the easy option but well worth it in the end.
The one other thing that was most helpful was the help of a dietician who understands the problems of a rearranged digestive system and dumping. With Stefanies help I have put on a stone and am still gaining weight. The dumping is still there but I am managing it much better and even occasionally looking forward to eating!!!
Both the NLP and the dietician I paid for privately but they were the best investment I have ever made.
Have a great Christmas and may the new year be the begining of a new and exciting chapter
God Bless
Liz
I do feel for you cherry.this forum is brilliant and has lovely people on it.i agree with all the comments you have recieved.we all have to be strong dont we.lots of hugs.
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From a Carer’s Perspective 
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