What is next?

[daniel]

hi my name is dan,im 35 from northern nsw and i was diagnosed with advanced oesophogeal cancer in august wich has also been found in my lymphatic system.I am one week into radiation and chemotherapy treatment and really dont know what to expect?I have been told the side effects and the statistics and percentages etc but i feel like i have just been put on the medical conveyer belt and sent on my way.Im positive 99.9% of the time and funny enough seem to smile a lot more then what i used to.:)I know there are many types of cancer and many different experiences and im not the only one in the world that is going through this but i feel so alone.Over the past 6 weeks ive had bad news after bad news and felt at times like im going to self implode.Im not sure if i have a direction anymore? dan

[Jules2]

Hi dan Glad you could write and express how you are feeling. You will get some direction back in your life, it just takes a little time. It is very challenging to be in your current situation. How did you get on with your treatment? Julie

[daniel]

hi there julie, Thankyou for the reply.In regards to the treatment i guess its going ok?I had chemo all last week with no major reaction except for constant nausea feeling.Im in week two of the radiotherapy and the pain is getting worse day by day but i have my boxing gloves on and ready to go ten rounds if i have to(like rocky running up the steps)My life has changed instantly and for the better in a lot of ways i think.I didnt want or expect this to happen to me but it has and i have faced the reality of it and it has made me grow into a stronger person.I havent talked to anyone about it except my family but i know its really hard for them to accept it.All i do is smile and say"it will be ok,im not going nowhere!"

[irdano]

Hi Dan, I'm also a Dan and live in Northern NSW,but I'm 45! I had an SCC in the throat/lymph nodes in November last year. And yes had chemo and radiation. Like you,the first thing i did(and this is just my way of dealing with the whole box and dice of fears and feelings)was to decide that it was just a speed hump and that i'd come flying out the other side with flying colours...i reckon staying as positive as you can(not always possible and completely human to not be all the time by the way) helps in a whole range of ways. The other thing i decided was to not take any of those percentages seriously...prove the buggers wrong! I didn't even tell anyone about the doom and gloom such and such percentage of survival blah blah blah...why give it any more energy?!?! How is your support network? Are you at home or in hosi? Where are you doing the treatment, do you have anyone besides your family (and us) to talk to? How's your appetite,any pain in the throat? Sounds like you are doing a great job,and although it is a bit of a medical conveyor belt,you are the most important part of that system and can do the most for your recovery. You have a new road to follow and you are not alone.one step at a time Dan. cheers Dano

[Phiross]

Hey Dan, I'm Phillipa. I'm 33 and in Melbs, but spent some time living up there in the late 90's - back when I was cool! I have Cervical Cancer and am 3 weeks into my treatment. I am halfway through radiation, a third of the way through chemo and then I have to have this other pleasant treatment called brachytherapy - radioactive rods up the vag while under aneasthetic. I reckon when everyone begins on their cancer journey (no matter what type) each person should be linked up with someone who is one week ahead of them. Sounds to me like your mental is going ok, although you are lacking a bit of physical support. Is that right? I am lucky, I have a fantastic support network, led by my mum and a great group of friends, however, it is you (me, each of us on the journey) who decides how this ship will run. You ask what is next? Well, what is next? What do you plan to do next? Each day we front up for treatment, and that is the best thing, and only thing we can do. The rest gets dictated to us by our doctors and bodies. For me, the last two weeks, have actually cruised on ok. This week though, things seem to have changed for me. The pain has REALLY kicked in, the nausea isn't stopping and I am just SO tired. But, you just gotta do what it takes to get through. Feel sick, spew. Feel tired, sleep. And so on. Don't worry about the statistics. They may or may not apply to you. I haven't even asked mine as I don't want to know. All I know is that yep, I have cancer, but I feel pretty strong in the head and as long as the head is right, I'll be right. That's what I figure anyway. I know what you mean about the bad news after bad news - I had a run of that, but at a certain point, it has to tip the other way. Just keep going. Front up, push through and eventually things will change. It just has to. I'm not going to tell you to stay positive, next person to say that to me gets a slap, but just do what you gotta mate. You'll get there and it's not half as bad as you think it's going to be. Rock on!

[Jules2]

Hi Dan Sounds like you are going ok with your treatment. 🙂 Thats great and i hope it stays that way for you. everyone is different and if you do run into too many problems with nausea make sure you chat to your onco bloke and he can change your anti nausea drugs. Hang in there and Dano has given a great insight. Cheers Julie

[#7]

Hi Daniel, I am sorry to hear about your diagnosis. I had bowel cancer 18 mths ago, and do know how you feel. Dan it does take time, but, the best thing I can tell you is that - It does get better. At the time I felt "What Next", I used to think why did I survive. I was so miserable, so unhappy, cried all the time, saying "Why Me!!" It has taken one year of the miseries to get to where I am today. I felt no one really knows how you are feeling. Not unless you have experienced it, do you really know. With the help of Psychologist, Cancer Council Support Helpline, Cancer Group meetings, Volunteering, my life is now back on track and once again Happy to have survived the ordeal. What doesn't kill us REALLY makes us stronger, this is true. In the long run things do get better. I wish this for you and please know you are not alone. DaphneRose

[purpleangels]

Hey Dan! My husband is 36 and has been dealing with cancer since Oct 08- we also live in Northern NSW......For him it has meant many trips to Sydney for treatment, no work for two years, loads of pain and lots of drugs.....BUT......he is still hanging in there and it sounds like you are too. Just keep talking, boxing, adapting...and that has been the biggest thing for us- is the constant change and adaptation. THAT is the new normal. We have two little kids who keep us 'real' and they make us smile and laugh even when we think we will never again, it is important to connect with something positive, and have a positive attitude, although as my husband often says is so hard when you have your head in a bucket and can't eat! But he always looks for the ridiculous in every situation and makes a concious effort to laught at himself (and me!) Good luck on your journey! PS_ Music helps him heaps too! for all sorts of moods and states of mind.

[daniel]

hi there guys!Thankyou all so much for the inspirational and encouraging comments,it really helps a great deal!Sorry its taking me so long to reply but ive just been trying to find the new norm of life wich i know i need so much!Im now into my fourth week of radiation and on my second round of chemotherapy.As yet i havent had any major reactions besides swollowing discomfort and the nausea and tiredness from the radiation and chemo but im ready for whatever this treatment throws at me!One day at a time! To be honest my swollowing has improved and i feel that the treatment is having a positive effect on this mother^%$#@@ of a desease.I am positive and happy 100% of the time and sure as hell aint going to let it beat me,no way hozay!I did have a hard moment when i recieved a letter to realease my superannuation and the doctor stated the expected prognosis was less then one year!lol.like F U doc and F your bit of paper!Just a bit of paper with ink on it i say.I feel better so thats all that counts and nobody can tell me what is possible and put limits on my ability to beat this.:) To answer some of your questions dan,i do have some support besides my family and here just off friends but nobody really thats going through the same thing I did talk to a lady that is having treatment for oeasophogeal cancer but to be honest i think im handling better then her and a few steps ahead of her (mentally)if you get my drift.I guess some people are a bit overwhelmed with apathy wich was a battle that i fought and beat in the first instance of being diagnosed.Where are you from in northern nsw dan?would be good to actually speak to someone with very similiar experience that has a sense of humour.Im getting treated in the tweed hospital and john flynn in tugun. I apoligize for my strong language references and i assure you its not anger,more the fighting spirit in me!And yes positivity comes naturally to me now and next person to say it to me is going to get a big hug and a kiss!hehe. My heart goes out to everyone who has to go through this terrible desease and there families that have to endure these ups and downs,in and outs,rounds and rounds and upside downs.Remember theres sunshine after rain and keep a smile on ya dial!but never ever smile at a crocodile!:b dan

[daniel]

hi there guys!Thankyou all so much for the inspirational and encouraging comments,it really helps a great deal!Sorry its taking me so long to reply but ive just been trying to find the new norm of life wich i know i need so much!Im now into my fourth week of radiation and on my second round of chemotherapy.As yet i havent had any major reactions besides swollowing discomfort and the nausea and tiredness from the radiation and chemo but im ready for whatever this treatment throws at me!One day at a time! To be honest my swollowing has improved and i feel that the treatment is having a positive effect on this mother^%$#@@ of a desease.I am positive and happy 100% of the time and sure as hell aint going to let it beat me,no way hozay!I did have a hard moment when i recieved a letter to realease my superannuation and the doctor stated the expected prognosis was less then one year!lol.like F U doc and F your bit of paper!Just a bit of paper with ink on it i say.I feel better so thats all that counts and nobody can tell me what is possible and put limits on my ability to beat this.:) To answer some of your questions dan,i do have some support besides my family and here just off friends but nobody really thats going through the same thing I did talk to a lady that is having treatment for oeasophogeal cancer but to be honest i think im handling better then her and a few steps ahead of her (mentally)if you get my drift.I guess some people are a bit overwhelmed with apathy wich was a battle that i fought and beat in the first instance of being diagnosed.Where are you from in northern nsw dan?would be good to actually speak to someone with very similiar experience that has a sense of humour.Im getting treated in the tweed hospital and john flynn in tugun. I apoligize for my strong language references and i assure you its not anger,more the fighting spirit in me!And yes positivity comes naturally to me now and next person to say it to me is going to get a big hug and a kiss!hehe. My heart goes out to everyone who has to go through this terrible desease and there families that have to endure these ups and downs,in and outs,rounds and rounds and upside downs.Remember theres sunshine after rain and keep a smile on ya dial!but never ever smile at a crocodile!:b dan

[Jules2]

Way to go Dan!!!