August 2012
Hi
I dont know if this wil help but I used to have a slightly larger than I needed tubi grip which I placed around the PICC site and I wore my chemo there. I just then stole my husbands shirts to wear when I went out. This will no help some people as I ma very tall so have long arms but it may help with the tangle when showering or bathing. When I showered i used to wrap it up in cling wrap which meant it was a little easier it just get on with washing rather than worrying about it getting wet.
Hope this helps
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July 2012
Hey Jules
I really feel for you . My management did not want me to return to work but found they could not get rid of me that easily due to legislation. On my return to work interview I think they were waiting for me to give them a long list of medications I was taking so they could say it would not be safe for me to return as it could affect my performance or be a health and safety risk, they couldn't even hide the surprise on their faces when I told them I took one tablet a day to reduce stomach acid and even had the cheek to ask if I was sure that was all I was taking. I reassured them i only took one tablet a day.
Since then they have tried again several times to get rid of me by threatening me with disciplinary but when I challenged them for specifics they changed their attitude and have now backed off again but are trying to micro manage me. It is getting tiresome I have to say and all because I have had a disease that frightens people just in its mention. I think they are trying to wear me down so I will leave and I have to say at times i could easily just go but hey I say I fought for something far more valuable than my job and fighting the is easier than fighting cancer so bring it on.
The ironic thing is I work in the caring industry and this is who the people in this industry treat others co-workers it makes you wonder how they treat their clients.
It is hard to cope with this type of discrimination but just remember that one day they could be hit by something just as serious and they will have to live with the guilt of how they reacted to you . I have also lost many hours of sleep through these people but I feel I need to stand firm on my rights for any one else who may have to face the same ordeal.
Good luck and dont let them get you down.
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July 2012
When I was diagnosed with my cancer i went an visited some friends and they spoke about different cases of people who had various cancers but their is one friend of theirs who had been given the 'kiss of doom' as it was phrased with lung cancer and not long to live but they performed surgery to lengthen his life and he is still going for what is now 15 years I believe and nobody can believe how well he still is. These stories were the ones that helped to keep me positive throughout my treatment and are good examples of who this horrible disease can be beaten against all the odds. My mother also had breast cancer 17 years ago and she is going strong so when I was diagnosed I already knew that it could be beaten even though my cancer was different but hey it is bad wherever it strikes and unfortunately some people are not as lucky as others at beating it but the way you write about your experiences I believe you will get through this.
They are only words but sometimes seeing it in black and white in reference to your name on the paper makes it hit home in your mind add a 0 to the 2 and make it 20 years +
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July 2012
Hi Daniel
As you know I have been through the same cancer as you and although mine was stage 4 also they were able to operate and it had not spread to any other lymph nodes. In my favour is that the surgeon explained to me that the statistics for our cancer are not good reading and to be honest they really are not but as he pointed out we are not really in the age group for the statistical data as almost all are in their late 60's or 70's and they are not as fit and healthy to fight this disease. The statistics also take into consideration those who had the operation and luckily I did not find these statistics until after my op as there is high mortality rate after the surgery due to complications but again these are for older patients.
It is difficult I know but I feel we need to put things into context and although we know there is a chance of a re occurrence there is no guarantee either way and I know what you mean by the bucket list but where as I used to think one day I will do that I now think I have the opportunity to do this so I will because I dont know when I will get to do it again rather than wait.
I like to think we have a lot longer than the 5 year statistic due to us being younger and fitter when this disease caught us and if nothing else it helps us seize the moments to enjoy good times rather than postpone things.
Your feelings are perfectly normal and it is difficult to focus on the future when you dont know how long it will be but if you let it take too much of fun time from you it wins.
MY first feelings when I was diagnosed were that I would not get to see 50 but now I want to see my expected grandchild grow up into adulthood and I will do my best to make sure it happens and try not to think every unexplained ache or pain is not a return of this disease.
Chin up and hope that none of you symptoms are anything more than an irritation.
Kasianne
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July 2012
Hi Dawn
I had esophagus cancer and could not eat for many months or what I did eat was very hit and miss as to whether it stayed down. I learned to eat and drink high energy /calorie things in order to keep me going and this was all before I was diagnosed and it became worse afterwards with nasal gastric tubes etc and still no joy at keeping anything down. It is amazing how much you can do without food intake and if the trip is what your father wishes to do then I am sure he will be fine.
I was lucky and the cancer had not spread and chemo managed to shrink the tumour and then I had an operation to remove the affected part of the esophagus and again went through the issue of not being able to eat. the most frustrating thing about my illness was people going on about my lack of food intake and then treating me like a child if I managed to keep anything down. Sustagen powder is good hidden in food and almost tasteless to bulk up the nutrition.
Hope the visit goes well
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June 2012
Hi Rubes
I had a PICC line inserted for my chemo back in September last year and reading and seeing diagrams of what they were going to do does seem a little overwhelming and scary but I have to say I am so glad I had it. Once the chemo started and you are faced with numerous blood tests and then huge syringes of liquid, bags of chemicals and saline and any other type of liquid you are deemed to need, in my case potassium, you begin to appreciate how the one procedure to fit the PICC is nothing compared to the number of needles you would have to face for each canula.
It is a little unsightly and always there but not hard to cover with a shirt and you know it is only a temporary adornment but such a useful thing even allowing more than one thing to be administered at one time due to it having more than one port.
Good luck with it and you dont have to watch it going in as you are lay down and hopefully they will talk mindless chat with you to take your mind off the procedure lie they did with me and until the treatment gets in full flow you will not appreciate how many needles it will save you. I also watched the scan machine pictures and they also distracted me watching the line go in.
I had a second one fitted after my op to administer the cocktails I needed then of antibiotics, saline, potassium, magnesium and many other substances in a bag so a very useful contraption that sounds a lot worse than it is.
Kasianne
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June 2012
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.
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May 2012
hey you are welcome as I have to say everything I read and heard on this cancer was not very positive but I had decided this illness was a blip in my life and I would beat it. This does not mean I didn't have my down times as awe all do but they were very few and short lived. I was in hospital over Christmas as I was determined to have the operation before the start of the New Year so I could declare 2012 as cancer free and that I did with me coming out of hospital on New Years day which also meant I was home for my birthday on the 5th Jan although could only look at cake rather than eat it lol well I could manage a few crumbs but it was so good to be home. I was back at work 10 weeks after my operation which shocked me as well as everyone else but it was good to get back to some sort of normality and have been back there nearly 3 months now.
When i was having chemo I met another guy who had this cancer 4 years ago and it had returned but during further conversation he had been treated with chemo only and his story was looking grim as he had never had the affected oesophagus removed. I also met him again on a follow up appointment just after my op and he really didn't look too well and to be honest I probably didn't either as it was 3 weeks after my op and I was a little frail.I am so grateful for the skill of both the oncology teams and the surgeons for my outcome and I hope yo get the same results. Mine was at stage IV before it was diagnosed and as I say I couldn't eat or drink at all so you are in a more positive place before you start so you will be fine and it is a good excuse to not do a lot while you recover and that cruise you have booked will be wonderful and so good to look forward to.
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May 2012
HI Christine
You are going through what I have just been through although my chemo before surgery did not involve radiotherapy as well. The good news was that the chemo regime of 9 weeks killed off the tumour so I was cancer free before they operated which obviously I did not find out until the histology results after the surgery but I was informed that to make sure it did not reoccur it had to be removed anyway. I could not eat at all when I was eventually diagnosed and had a feeding tube in place straight into my duodenum but after the first rounds of chemo I was able to eat again with me enjoying a full roast lamb dinner the evening before my surgery.
My stomach is now in my chest and I have to say I now feel that I was never ill until I look in the mirror and see my hair still has to grow back and I need to put some weight on. My eating is back to normal now although after the surgery it was a little difficult at first and the main problem was the discomfort around my chest and lungs due to the surgery which caused a lot of breathlessness and it became a talent to breath and talk but my daughter husband and I laugh at it all now. I was out of hospital two weeks after the surgery which I believe is quite soon as they do expect you to be there another week at least but it was just great to be home.
Good luck with your treatment and surgery and hope all yours is as straight forward as mine.
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May 2012
HI Mazsa
That is no problem at all but I do believe most people are treated at the main hospital although the box was ticked that I was a private patient. I think this was because a the time I was still a temporary resident here in Australia and I was treated under a reciprocal health care agreement therefore all my costs were billed to the UK. I met many patients during the many hours sat in the chemo chairs who were privately being treated there and also during my time as an inpatient after my surgery. I also know of a few other cancer patients who have opted to go via the public health system as they received better treatment.
One woman I met was being treated with chemo alongside me and she was having to travel down to Brisbane for her surgery as she was a private patient and once she heard my story felt she had not been given the best advice and was rather jealous that mine was going ahead up in Townsville as the though of travelling back after surgery was not good news to her. She was really struggling with the chemo and was extremely ill, making me feel guilty as I was on exactly the same regime and sailed through it.
The surgeon I had was first class and highly respected by his team and I couldn't believe how dedicated he was to his patients when he turned up on Christmas and Boxing Day before he headed off on a holiday with his family and his registrar was equally as dedicated.
I will give you as much information that I know of but maybe going privately through the general hospital is your best option, I know if I have any further cancer issues that is where I will be heading directly to.
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