did this to see how I am doing and how the rest of the community are doing. Well here are my thoughts. I am post op nearly 6 years, generaly doing ok but still have day-to-day problems. I still have trouble sleeping, still wake choking now and again. Have days of extreme tiredness and fatigue but also days, especially in the morning when I feel great and can get things done. social eating is out, I just can't join in and when freinds come to eat with us I feel so out of it, I put on a brave face but sometimes just can't stand it. I am alive and very greatful for that but now the operation is a distant memory and friends and family are used to me and my ways I still feel out on the edge of life, sometimes waiting for the 'sorry it's come back' this is not just fear, some of my friends have had this happen and are no longer here, but also life can be taken away by many other means so we go on living the best we can. I am an optomist and have very good support from friends and family, but as you who have been through this know, there are times when you are alone and only you and those who have been through it know how you feel and what is going on with your life. I guess we have to just get on with it and get help as and when we can. Being a survivor of this cancer gives hope to those around us and they look to us as proof it can be beaten. We are ambassadors for life after cancer and have to play this role, it gives others hope.
So here I am, doing well, still some problems, but nothing I can't handle. sometimes we have to let others know how we feel, how we are, to remind them that we still live with the after effects of this terrible cancer, even though they can't see it any more. I wish you all well, be brave and strong, have a purpose in your life and be grateful for still being here to read this.
hi bryan , i have just read your posts , i am new here but find the site very inspiring and helpfull . i do not have cancer but a blockage from another cause , so the diet advice and swallowing tips have been very helpfull . i know what you meen about living on the side lines , over the years of this avoiding meals has led us to lead a very quiet life , so many social things based round food. it took me years to get diagnosed and now i have been i am coping with a new reality , i find family and friends are sort of , thats great , done move on i think its the modern way now , so i am trying not to mention it and try and find new ways to carry on as normally as i can .lack of energy is the worst , two tablespoons food max every two hours , and sick of melting puddings already . but reading peoples journeys on here i really am lucky . so thank you for being someone on here who gives encouragment to others . my mum 85 is eleven years post colon cancer. and my dad 90 is 33 years post throat cancer . so more success stories .
best wishes to you f
I think that the eating issues are a permanent issue and you have to remain careful about eating little and often indefinitely. That is an assault on the quality of life, especially as eating together can be such a social things for us, and restaurants will generally not understand enough. And friends generally will not always understand how fragile your new digestive system is.
Some people do manage with ordering just a starter, and the OPA cards asking for small portions can be helpful.
It is sometimes worth keeping a food diary again for a while just to get you thinking about whether there are quantities of food, or certain types of food are giving you problems. I do think that there is an extra 'convalescence' of coming to terms mentally with the kind of eating that you have to do, and it does require a lot of confidence to sit with others and not eat the same as they do.
Fatigue can be a big issue, especially when it tends to hit you the day after you may have been particularly busy.
Sleeping propped up, and staying in the right position to avoid the reflux can be tricky. Some people do have the adjustable beds (expensive but I think IKEA may do them) and getting the pillows right and the head of the bed / mattress raised can be the result of a lot of trial and error.
You are quite justified in feeling cheated out of normal life and eating, and the fact that you have survived the cancer well does not really make you feel as happy about things as you feel it 'should'. That is quite a common feeling for your situation. It is this mental track that one has to go down alongside the medical one, and sometimes it does take a long time to come to terms fully with everything that has happened.
Some people have found Peter Harvey's article very helpful with all this sort of thing; others take advantage of the advice and support from Maggie's Centres or an equivalent cancer counselling centre. It is a very normal and understandable reaction.
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nausea and sugar dips
Swallowing difficulties 5 months post-op
