Dont have any direction anymore

[daniel]

Hi, I dont mean to be negative and only ever try to remain positive and under the circumstances i think i have done pretty well but sometimes the strain of having cancer just overwheelms me.Its been 2 years now since i was diagnosed with stage 4 advanced esophageal cancer.Had my latest checkup last week and the doctor told me he is surprised i am sitting in his office and still have no recurrence.....good news hey...I have moments when my face lights up with complete happiness and then other times i feel just so down in the dumps...I feel lost most of the time lately,like no direction in life after having it turned upside down a couple of years ago.Being on a disabilty pension just doesnt cut it for me as i was always a hard worker so i have returned to work on two occassions this year and both times have lost my job due to being hospitalized with a small bowel obstruction which the oncologist is 99% sure is not cancer related so more good news.I just want normality back in my life...go to work...look forward to the weekends..have a beer with the boys watching the footy....not have people asking me hows my health all the time.. I asked centrelink if there is any options to obtaining employment where the employer is aware of my illness and i wouldnt be sacked if i had time off due to my illness but basically i was told jobs like that dont exist anyway.Just leaves me no choice but just to try and gain employment and lie about my health and just keep my fingers crossed i dont get sick.It hasnt been easy keeping a brave attitude since my diagnosis,I was never told i would be cured because i had distant metasis and im in a very small percentage of people that has good results 2 years after chemo and radiation...I know i should be grateful and believe me i am!I just need normality back in my life and i have tried so hard to make it happen but then i have been pushed down again.Im not really the kind to feel sorry for myself and be apathetic but after 2 years I really really just want to scream,jump up and down,tell everyone im p*$## off! I wish that i would wake up and it was all just a bad dream...

[kj]

daniel It really sounds like you could do with some guidance from a councellor no shame in that we all need help at some stage with this disease trying to stay mentally positive for so long can really drain you possibly help with guidance will see you get on top at this difficult time in your life and give you new direction good luck kj

[wombat4]

I think all the sufferers and carers that visit this site and other similar sites wish the nightmare was over, to be able to wake up to get on with our lives as they were before we became lost. How wonderful that would be... Wombat4

[daniel]

its just frustrating....i have seen a councellor a few times and in a way it helped....i dusted myself off and actually got a job,things started coming together...then bam back to where i started...i know life is full of surprises and nobody can predict unforseen setbacks.I suppose the hardest thing is that i was never givin a reality that my cancer is curable and its really hard for me to see long term and this damn thing is always going to haunt me...maybe i am cured...maybe i will live much longer then anyone thinks..only the universe knows that...sorry to rant,it just helps to get it off my chest.All my family just think i overreact and because i look ok and not bald and laying in a hospital bed that everything will be ok when in reality living a long term life through my 40's and 50's will be nothing short of a medical miracle..The doctor told me i had pretty much a 95% chance of not making it this far without recurrence as the tumour was so large and the distant metasis thing was really the clincher.I hold onto the hope that i will survive and losing the battle isnt an option really i just wish everything would fall into place easier.Dealing with a life threatening illness is hard enough without dealing with everyday issues such as work,friends,family and after 2 years of it i feel i need to tell someone how p****d off i am...I think i need to turn this anger into assertive action and do whatever it takes to find peace with my situation...

[kj]

daniel If that is the way you feel go for it no one on this site is judgemental vent if it helps you to feel better, unless someone is standing in your shoes they do not know your feelings,we all react differently to cancer I chat regularly with someone who is in the same boat as me, however she is worse off but we have the same diagnosis in the end so we can open up about our feelings of uncertainty and hope about what is happening in our lives i know i derive great pleasure and benefit from our emails and her input hope you can find the same peace kj

[Rikki]

Daniel, I hear you! I received my diagnosis less than 5 months ago and already I am struggling with the 'new normal'. I often wonder about this new person I seem to have morphed into. What happened to the old me? I can see after two years it would be very hard. Maybe kj's suggestion of someone to communicate with who is traveling a similar path would be good. In the absence of paid work you could try volunteering. Anyway I am sure you don't need our suggestions, just know we are listening Hope that helps Rikki

[Gypsy1946]

Dearest Daniel Please don't give up on yourself, you have made it this far, especially after two years after diagnoses, my husband passed away a month ago from this very same cancer and we only had 8 months from the time he was diagnosed, I admire your spirit for wanting to keep working and as one of the others said volunteering may be an option. I can understand your anger and frustration as we have run the gamut of all the emotions and I miss him every single day. Just know that we are all with you on your journey so keep writing and we will keep listening. Jill

[Tina_Basson]

Hi Daniel,It sounds like you are dealing with things the only way you know how,you own your cancer and you deal with it the best way you can.Being down or angry or resentful are not bad feelings you have every right to feel that way,the same as you have every right to deal with it the best way for you.I myself peak and trough and have good and bad days,but it took someone very wise to say to me it is ok to feel whatever you feel whenever you feel it.Dont be harsh on yourself for your feelings,and never feel worried about venting on this site,as we all do at different times.Hang in there and accept today as it comes.Hugs and wishes.

[Kasa]

Hi Daniel I can see where you are coming from. It is really hard....... Not sure what advice I can offer you, but I hope you keep going. I've been seeing a counsellor since my first diagnoses and lucky for me she let me keep seeing her. We get on really well and she has seen the lows. I think the secret is finding some one you feel comfortable talking to whether it be a professional or a friend.

[daniel]

Thanks guys,i really appreciate your comments, It does help knowing that im not alone and for the last couple of years i have tried my hardest to avoid focusing on being a cancer patient and just kept it to myself apart from a couple of blogs on different sites.I am so sorry to hear about your loss gypsy and i know that i am extremly lucky for having a positive result.I do so much want to keep in a positive state of mind and not let this beat me physically or mentally as i know that the worse thing i can do is give up.Its just hard to keep smiling at everyone all the time.I have lost all close friends and my family doesnt even really talk to me anymore and in a way i feel its because i havent just brushed it off and moved on yelling"hooray hooray i am cured!"I am yet to read about anyone with inoperable esophageal cancer with distant metasis that is a long term 5 year survivor 😞 so is it me?am i just overreacting?should i just man up and ignore what the doctor says?should i just pretend its not as bad as they say?I dont know anymore but i do know i should make the most of my life and i will do my best to move on and find some normality.In a funny way it has changed me into a better person,i tend to stop and smell the roses more than i used to and who knows maybe all this happens for a reason...... dan

[kasianne]

Hi Daniel I have just been through the same cancer as you and we have communicated before except I was given the chance of having the operation to remove the affected part of my oesophagus over the Christmas period and I was given hope that the treatment they were giving me was curative and due to my age I should hopefully get there. I am 46 so a few years older than you. The problem with our cancer it normally affects older people or so I was informed and due to the deterioration in health due to lack of nutrients the success rate of being cured is very small and luckily I read this after my operation, most deaths occur within days of surgery. I luckily recovered very quickly from the surgery and believe this was due to being able to eat properly again prior to surgery thanks to the chemo. I went back to work 10 weeks after the surgery and I am very lucky to have a supportive work team but unfortunately for me the group who employ me are playing dirty games and trying to oust me and you really need to look into the laws around discrimination around illness. I have been back at work for 3 months now and they are trying to get rid of me but luckily I have a lot of rights due to having had cancer and although I could really do without the stress i am winning the fight with the support of my staff team who are 100% behind me. It is tough but it also takes my mind off how I was such a short time ago when things were tough physically. I can understand your need to work as I am driven that way too and maybe it is worth just looking for any job as long as it gives you focus for your day and provides an income, if nothing else it gives your day a focus. The ironic thing about my circumstance is that I work in a supposedly caring profession and the people who are trying to oust me are supposed to be that way orientated and this is how they show it. I will win and get justice for myself and hopefully others who may find themselves in this position like yourself. Good luck and just be grateful age was on your side in fighting this horrible disease and may you have many years ahead of you, I sure hope I do as my first grandchild is due in October and I want to watch him or her grow up.

[daniel]

This is awsome news kasianne....i hope you continue to do well and it all becomes a distant memory 🙂

[SILLY]

I don't have the same cancer as you but it is a head and neck cancer that I have. I was diagnosed just over 2 years ago and mine is not considered to ever be cured . Luckily mine was stage 3 with no metasteses as yet. I am not as badly off as many but did struggle for months with depression until I had some counselling. I was 59 when diagnosed and only did relief work but was terminated because I hadn't worked enough the year it was all happening. I sometimes feel life doesn't have enough meaning any more because of that . It must be more difficult when you are younger . Mostly I am happy but there is always an underlying sadness ,missing the life I had. . The side effects of treatment ,although not so big to me now ,are a constant reminder of cancer. I understand what you're saying .You have come a long way . Under the circumstances I think you have done well. I think most of us have the feelings you described but if they become too much you can have more counselling . Those without cancer often cannot understand . It's like a never-ending story. All the best.

[Rubes1984]

Hi Daniel, I can relate to many things u are saying especially about what is normal and wanting to return to work and normality. I have taken a lot of time off work this yr and am now on unpaid leave and hopefully they will hold my job until I can return back to work. For the last 5 months I have stayed so positive chugging on determined to beat this cancer. I still don't know my stage lung cancer I have -awaiting results of bone and lymph node tests. I think u are doing an amazing job fighting ur cancer and its great that u feel comfortable to express yourself and ur emotions. There are many ways to cope - expressing yourself is healthy and cleansing. I hope u are able to find an employer who is understanding and flexible to give u the chance u deserve. Ruby

[mg0080]

Hi Daniel One of the things that you may find helpful to do is find somewhere to be a volunteer worker. Choose a field that you are interested in like the homeless or a children's hospital or youth work. It is such a great joy to help others, can take your mind off things. And also it's flexible!! If you're not feeling well one day you don't have to go AND you don't lose your job. It's the best and also you will find that what ever community you get involved with they will become like family and will end up giving you support too. I can recommend it! blessings mg

[glenys48woods]

Hi Wombat, Wombat you are having a BAD time. I haven't lost my marriage partner so I wouldn't know what it would be like and how lost I would be if I was in this situation. I sympathise with you as the nightmare must be so dreadful and you would miss your wife so bad. I think you have 3 children too and they must miss their mother. I feel nervous with the message you put here and the way you put it as I am not looking forward to have my Colin pass away. I love him so much after nearly 40 years together. When this happens I would only have my son as I am isolated from them in WA. The isolation of not having my sisters and brother around me every day is in some what hard to handle sometimes. Glenys 00