A milestone reached this weekend and one that two years ago I was not sure I would reach. The chemo killed the cancer although I did not know this until the pathology results after surgery on 6th January,always be a date to remember as it was the day after my 46th birthday which I may not have made it to.
As far as I know form my last scans in September I am still cancer free so another 3 years to go to be declared 'cured' by my doctors as my type of cancer has a high incidence of re occurrence within 5 years so nearly half way there.
Good times 🙂
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I had esophageal caner which was at the junction of my stomach and by the time I was diagnosed I had lost 20kgs and was unable to keep even water down on a bad day.
Initially I was given a nasal gastric tube to feed myself a hospital nutrient preparation but it would accumulate in my stomach and I would bring it ll back p late afternoon until I bought the tube up as well.During this tie I was giving up hope of anything working I was so hungry and frail and sometimes gave up trying to eat anything as I had my head constantly in a bucket or down the toilet. I can understand how some people become very depressed with it all. A few days after the gastric tube came out I was taken in hospital to have a Jpeg tube inserted into my duodenum and started the regime of being mechanically fed. The feeding process was slow as apparently you can be fed into your duodenum to quickly so me and my lovely machine went everywhere together even to work for a few weeks.
After my first round of 3 chemo's I started to be able to eat little bits again I just craved wanting to taste and chew. I had to start gradually due to not having eaten for so long and I had to gain weight if possible to get through surgery.
I am a very fussy eater so taking supplement food was not going to happen in the normal way but my husband added sustagen to milkshake with fresh fruit especially bananas for potassium which was always lacking and also got administered by drip during chemo. The vanilla one can be added into loads of foods without knowing, or so I found out after I had eaten the foods. My husband made me soups and mashed potato, veggies in a cheese sauce with it in.
I hope the chemo helps your husband like it did me I got an appetite back and put on another 5 kgs before surgery. That was two years ago now.
Hope this gives you some ideas and all the best through his treatment.
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Believe me Julie it was very hard at times and I really just wanted to throw the towel in, but it was good to have some people supporting me and getting me through the tough times.
I am very lucky that my scars are under my clothing and I have put the weight back on so to look at nobody would know what I have gone through unless I tell them or they knew me when it was happening.So if I went for another job then nobody would know any better and I really feel for people who have had different cancers to myself.
There is work out there for you and the job you get will be well deserved and they will be lucky to have you. I have a supportive family which really helps and my husband is always there to talk to if I need to.
In fact going through this has opened my eyes to the people I can trust and those who are just in the game of life for their own ends, these are the people I waste as little of my hard fought for time on as possible and I am sure Karma will come and bite them on the bum.
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I completely understand your frustrations and feel free to rant, some people just don't get it do they. S we had cancer we dealt with it and we have a few scars to remind us that we fought hard and hopefully we have it beat but every time we have a test or a visit to the hospital we are reminded that it may come back but then it may not if we re very lucky.
Things improved for me a lot at work as we managed to get together a 'coup'(for want of a better word) and replace the management committee and things have gone from bad to really good.
I had the ovary out just after that post and things have been good except for my inability to store iron but supplements help me get over that and my New Year resolution for 2013 was to get through it without an anesthetic, touch wood I am doing well as I am sure sedation for an endoscope doesn't count lol.
I hope you can find a job without the prejudice and to be fair it is their loss as they obviously do not know what a strong and determined person they are turning down. Good luck and r=feel free to rant away.
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I was slightly different in that I had chemo prior to my surgery as I was in the later stages of cancer and they needed to reduce the tumour before they undertook the surgery.
After the surgery I was supposed to undergo a further 3 rounds of chemo and due to the results after the surgery i declined to have it. From the tissue they removed there was no evidence of cancer including the lymph nodes they removed.
y decision was after realising the cancer was not in the nodes the chances of it spreading were a lot lower. Members of my family tried to persuade me otherwise but to be fair they are not the ones who have to undertake the treatment.I have just had my two year check u and all is good and no evidence of cancer.
Hope your mum recovers well from the surery.
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I read the stories here regards public verses private and feel that a lot depends on where you live.
I was diagnosed with esophageal cancer stage iv in August 2011 and i struggled to get a diagnosis through the public health GP's but once I went to a private GP I had an endoscopy the following day which I paid for and the diagnosis was confirmed 5 days later through biopsies.
I was referred to the public health system and got an appointment the same day.
Everything progressed very rapidly from there including flights to Brisbane from Townsville for a PET scan and surgery to remove a suspect ovary and insert a J-peg tube to feed me.
I was operated on and pronounced cancer free in December 2011 after 3 rounds of chemo until the November.
I think the public health system responds to the urgency of an individuals situation. By the time I was diagnosed I was very malnourished and dehydrated so it was deemed fairly urgent to act and now two years from diagnosis and a few more procedures of which I have never had to wait more than a few weeks I would say the public health system here is excellent.
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Really sorry to hear about your diagnosis and I cannot imagine what you are going through. I was also 45 when I was diagnosed with the same cancer but my tumour was only 5cm long although it was virtually blocking my esophagus so eating was just not happening.
I was more fortunate as despite a few scares of secondary's it turned out this was the only place I had a tunour and it responded really well to chemo and mine was operable so I had the operation to rearrange my digestive system in December 2011 and found out that the chemo had managed to eliminate the cancer with no traces in any of the tissues removed, They removed 10cms of my esophagus.
I hope that the treatment they are going to give you can give you more than the 2 months you are stating, during chemo I met another man who had the same cancer which was inoperable but this was a reoccurrence and he had been on remission for almost 5 years and yes it was a real downer that it had returned but he had not been given a very long life expectancy after the first tumour was dealt with so there is hope for more time than they are predicting. Good luck with your treatment and hopefully you get a lot more time that you have stated.
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I am pleased that my reply has helped you a little. My tumour was right a the junction of the esophagus to the stomach and this meant that my stomach was not operating at all as the tumour was affecting the reflux valve so even keeping saliva down was impossible at the worst stage of this journey before and during the commencement of the chemo.
From what I have heard whichever way they do the operation it is very complicated in terms of the location of where they go into the body and I believe with your tumour being higher they go in through your shoulder where your collar bone is and maybe cut through the chest wall to be able to access the esophagus.
They had to completely relocate my stomach and it is now in my chest and my esophagus has lost 10cms in length and they have pulled my intestines up with my stomach so I have some of them in my chest to so that the stomach could be reattached in my chest. I was informed that when the tumour is higher they can just take out the affected area and rejoin it to a lower part of the esophagus but this would probably mean other parts of the digestive tract being moved around a bit to.
I was not allowed to eat or drink anything for 10 days after my surgery to allow the joins to heal and I had a feeding tube into my duodenum but that had to be inserted in the October just to give me nourishment prior to any surgery as I was very malnourished and weak as I had lost around 25 kgs in weight by this stage. I thought the feeding tube would freak me out having to deal with it but it was amazing how easy using it was.
When I was allowed to eat again it was initially just soft pureed food and in the hospital this food was tasteless and really horrible but my husband was fantastic and some of the meals we had frozen in the months prior to the op he would defrost and liquidize for me so I could have something with taste, have to admit it didn't look very appetizing but tasted good compared to the hospital offerings.
Within a few weeks I was eating normal food just smaller amounts than before but now I am pretty much eating proper sixed meals although I can only manage one course which is a bit of a shame as I love my desserts. I do have problems with my bowels if I eat too much sugary stuff and if I miss a meal I suffer to and apparently these are two forms of 'dumping' syndrome and to do with blood sugars. I complained to the doctor that he had taken away my ability to function properly as a woman and eat loads of chocolate when I was feeling hormonal. I think he thought under the circumstances this was funny and then proceeded to explain what was happening. I struggle with too much diary as well as this gives me diarrhea but I think I know my limitations now and just adjust my eating accordingly and it is a small price to pay for my life.
I did have physio in the hospital and they checked up on me a couple of times after I left but I was very determined to do everything I could to get out of there so was very compliant and a lot of what they wanted me to do initially was very difficult and this was simple things like walking as it was so tiring and as for breathing and talking together this led to some very broken conversations but it was only for a few days.
Going to the bathroom was a planned experience with removing oxygen tubes, taking drain bags and then the drip stand with my cocktail of drugs being pumped into my PICC line plus having to disconnect from my feeding tube so this could not be a last minute dash.
My personal experience I feel was positive in light of the situation I was in and prior to the operation my mind has made the whole experience far worse than it turned out to be and if ever I feel a little down about what life has thrown at me then I remember I could be dead now if I had now had the opportunities the doctors gave me and I have since become a grandma so that was so worth fighting this for.
The statistics make really bad reading but most of them are from people far older than us and their health in general was far worse before they got ill so I chose to put them into perspective as they did not really apply to me.
Hope this has helped.
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The operation is a biggy and I was told 10 hours and it actually took nearer the 12 hours mark not that I knew anything abut any of it, they put me to sleep and I woke up in intensive care and all was done.
Being told that they are just rearranging your insides is a very simplistic way of telling you the truth and it is amazing what they do and how the body copes. I had a couple of set backs but with the magnitude of what they did it is not surprising but my set backs were quite unique to me by all accounts. I was out of hospital 2 weeks after the surgery which everybody thought was amazing as the average stay is more around the 4 week mark.
I only had chemo as well but apparently that had eradicated the tumour as the tissues they removed in surgery including the lymph nodes were all clear of cancer. Apparently radiation with this cancer can cause problems around paralyzing some of the muscles which control your food moving down the esophagus. Hopefully you will be as lucky as I was an be able to eat properly again before the surgery which will give you the strength to recover quicker.
Good luck and remember the thought of surgery is worse that it actually happening and those having the surgery do not suffer emotionally as much as our loved ones waiting to hear form the doctors to say it is all over. That is how I rationalized my fear of going to the theatre and when I put it like that I realized I had the easy bit as I did not have to watch myself and wait to hear from others.
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.