About kasianne

kasianne

I was diagnosed in August 2012 with esophagus cancer and I am currently cancer free and still under regular check ups. I underwent chemo, in fact I finished this a year ago and then the surgeon performed an Ivor Lewis esophagetomy in December last year and since then I have gone form strength to strength although i have recently had a little set back of having further surgery for the removal of an ovary which despite supposedly being menopausal decided to reactivate itself. Obviously your dad is not going to have that problem. I have to say when i was diagnosed I was told it is a difficult cancer to treat due to it usually being in the later stages by the time it is diagnosed but you can get through it although I know my situation is rare and everytime a doctor sees me and knows what I have been through they are very surprised with my recovery and how healthy I am now. Feel free to ask questions and I will try to answer them. I have heard many varying stories of people with this cancer and not all are positive but I have tended to focus on the positive stories. Kasianne

kasianne

Hi Maggie Sorry to read that you have to deal with this horrible disease and that you are only at the beginning of your journey but you must not feel like a fraud as the whole thought processes involved with being diagnosed and entering a journey of the unknown is scary stuff. By the time I was diagnosed I was extremely ill so it was a relief to actually get an answer as to what was wrong with me and everything happened extremely quickly after that but once my treatment commenced I started to feel better within weeks, leading to my operation which really took its toll on me but I did not let it keep me down for too long with doctors now being amazed by how well I look now and my recovery. Throughout this my husband kept up a stern and stoic front with humour to help get us through. It took a ridiculous outburst when it was time to go shopping one Saturday for us both to have a hug and cry about the situation and then we found our way forward. I think his way of getting though this was to try and make sure that I was ok and cheer me up when I was down and it must have been difficult for him to watch me go through this as his mother died of cancer 3 weeks after diagnosis so it must have been a horrible reminder for him of her last weeks. Maybe you need to be blunt to him about how you feel and ask for more support but we have to remember it is very difficult for our loved ones who have to watch us go through it all and they can only imagine how we are feeling. My realisation came through when it was time for the operation, I was terrified and would openly admit that I did not want to go through with it but knew i had no choice then I realised I had the easy part as I would not be waiting for the phone call as to it being over, worrying about if I was alright, I would be asleep throughout it all. I felt a fraud at how quick I have come out the otherside of this disease when I read how difficult this journey is for others but it is all very real and difficult for all of us. Congratulations on becoming a grandmother soon, I have a 4 week old grand daughter and it is just wonderful and something really positive to pull you through this difficult time. Thinking of you through this difficult time. Kasianne

kasianne

HI Caroline Andover - I can understand why you wanted out of there as there wasn't much there although most of my time was spent at the army depot there. My granddaughter is wonderful and I cannot wait to be more involved in her life, a little limited at the moment with my daughter breast feeding and all I end up with the calming a crying baby to sleep and the dirty nappies but all so worth it. I had a 4 week break between the end of mu chemo and my op but then I had a cycle of very strong chemo one week and two with continuous chemo 5 FU though a PICC line so it was 7 weeks form the last big hit of chemo. I was just starting to get my hair back looking really hot with a fluffy grey covering. I am in the tropics so I have to say I spent the hottest days of the summer, as reported to me, in hospital in free air con so it wasn't all bad it also encourages people to visit for a free cooling down hour. I don't envy you the operation at all but before you know it you will be on the better side of it. I am sure your son will be fine through it all form my experience he will focus on his exams as a distraction from confronting his feelings on what you are going through, these teenagers are tough cookies and find their own ways through these things. You concentrate on yourself and you will be fine, it is time to be a little bit selfish. All the best and my thoughts are with you Karen

kasianne

Hi Caroline I am from Hereford but was in the Army many moons ago and spent a lot of time at Andover and my husbands sister lives in near reading not to far from Newbury. MY husband was fantastic throughout the whole cancer thing, I couldnt eat or drink for a while and he was brilliant at the technical stuff around feeding tubes etc. I had to be fed over night for a period of time and even though I offered to sleep in another room with the machine making a click click noise all night he would not hear of it. Trying to get him to go out for a drink was a nightmare which I thought was ironic really as he would go to work all day but did not want to leave me to look after myself in the evening. I agree I am so glad this happened to me over here and not in the UK I dread to think of the outcome if I had been there, I used the public health system here on the reciprocal system and I cannot fault any of the care I have received even to this ovary thing going on now, which I am sure will be fine as all the indications are it will be and if not well off we go again. Too much to live for my daughter has just had baby so need to spoil her and any more that come my way. Your operation will be fine and I am sure you will be surprised how quick you recover and I know your fears about croaking it on the table but then I thought to myself I shouldn't worry about it as I wont know anything as I would already be asleep, it is those I leave behind I would felt sorry for. Hope all goes well Karen

kasianne

HI Tassie I am also from the UK arriving just over 3 years ago and I can say the cancer journey was not on my new life agenda. It sucks and I have to say I had chemo prior to my major op last Christmas and the outcome was very positive as there was no evidence of cancer in my esophagus or lymph nodes that were removed so it worked for me and hopefully it will for you to. I was on the table for 12 hours and then had to be rushed back down for a further 3 hours the following day due to my stomach not liking its move. It was all very daunting and I was working myself up about the whole situation but then I sat and looked at my husband who was very supportive and my adult daughters and realised I had the easy bit really,whilst they were all waiting for the phone call to say I was back from theatre and every minute seeming like an hour I was completely oblivious. IT is tough to get around mentally such major surgery but once it was over I had no option but to just work on getting better, which I have to say I am now. Having issues with my remaining ovary too as it was supposed to remain dormant after the chemo but has decided to grow something on it and cause me to bleed. So far all the tests are coming back negative for cancer so when they remove it in two weeks the result will be the same. Good luck and hope everything goes well for you and your family. Kasianne

kasianne

Lol you remind me of myself, very impatient with my oncologist and hoping he would put me on his boring pile but unfortunately I have sparked his interest again but hopefully this will be a temporary arrangement in my treatment. He rang me up with some scan results and I had only seen him an hour or so previously but the results were not in so he rang to tell me the results I accused him of missing me which set him off laughing. He had asked me previously when I next had to see my surgeon and I said I was now on annual visits so he said he would see me in 3 I optimistically said 3 years then and he rolled his eyes and said 3 months. The feeling of your hair growing back is fantastic just I am not so sure of the curlyness of my thatch but hopefully in the next few months it will be long enough to tie back again such a a nice feeling.So happy you are on the right side of your treatment and good luck for the future. Kasianne

kasianne

Hi Kiri Where are you being treated? The oncologist is the person who should be organising your chemo and working alongside your other specialist in order to make sure you are receiving the right treatment. They are the experts on the combinations of drugs for your particular cancer.I had a surgeon, oncologist and dietitians working with me. It is difficult for people who have not had much experience of cancer or had it themselves to understand your emotions and you have to remember that the comments they make are only them trying to be helpful and supportive throughout your journey. You may not find them beneficial and they may provoke some behaviours you don't understand like throwing out the splenda but hey in this situation you will try anything that may help. They are right their is always someone worse off than ourselves but that does not make our own situation any easier to deal with and another persons battle does not affect how we are coping with the diagnosis. I never really found any support networks here in Townsville but to be honest did not look very hard, I am very lucky to have a supportive family two daughters, a step son and a wonderful husband who were all there for me and an aunty who helped out a lot with the chemo runs and keeping me entertained whilst everyone else was out at work. I was in very bad shape by the time I was diagnosed as they struggled to find out what was wrong with me as like you I am young to have the cancer I had and also it is not very often found in women so I was a bit of a surprise diagnosis to the doctors as well. The rest of my family is still in the UK where we moved from 3 years ago and they did their bit by phone and skype. I am not surprised your thoughts are everywhere as you are given loads of information and it becomes hard to process what is happening hence why I always took someone with me to my appointments so they could make sure I had the treatment plan sorted in my head. Not sure what else I can say but add me as a friend and then I can give you my email address and we could type in real time either on msn or facebook or some other media. Kasianne

kasianne

Hi Kiri I am in Townsville and have just been through the cancer journey and not entirely sure whether I am about to embark on it again but hopefully will find out in the next week or so but hopefully it will all just be my body playing up like the oncologist says he thinks it may be. It is very difficult for those around you to comprehend your diagnosis and at such a young age and it is going to be a difficult time for you but take the time and opportunity whilst going through your chemo to talk to the nurses and other patients it is an amazing chance to talk about being yourself and not broken. The oncology nurses (well all the staff) there are great and full of advice. I am 20 years older than you but quite happy to help if I can Kasianne

kasianne

It has been just over a year since I was diagnosed with Oesophageal cancer, things were going really well, strange person I am I actually got better on chemo so when it came to surgery over Christmas I was cancer free from the bits they removed including the lymph nodes. Reason to celebrate with small meals, due to stomach shrinkage as I was discharged from hospital on 1st January Cancer free which was my goal. I returned to work after a discriminatory battle as obviously someone who has battled cancer cannot work properly but I won and have been back 6 months now despite them trying different methods of trying to get rid. In March at my check up with CT scans etc still declared cancer free and still managing to fight off my management committee to keep my job. July my hopes were dashed when the one positive thing to happen through this cancer experience was the menopause, my periods returned with the missing 8 months reprieve in one hit I think as i have more or less been continually suffering. Poor GP been doing his best to discover the cause but needed to stop the bleeding first and he was becoming very concerned about the levels of hormones I needed to take to stop the bleeding for the tests. 6 month CT scan for my routine check with the oncologist, the ovary they left behind after last years removal of the suspicious one has decided to grow in size and produce loads of cysts, cause me pain and is the reason for this incessant bleeding and so I now need to wait for more tests and a trip to the gynecologist to have it removed. Quite frustrating really as permission was given last year to take both as apparently they are a magnet for secondaries and they left it so as not to induce early menopause!!! Lets just hope they are only cysts growing but this complication is causing some discomfort and despite everything I have been through pain has not featured a lot in the cancer process, which makes me feel a little fraudulent throughout the cancer journey. To top it all the management committee I thought had decided to drop their issues with me have restarted their vendetta, saying that it is not all of them but it still makes working life stressful which I don't need at the moment and I have the full support of my staff team which makes it more bearable but the ironic thing is that I work in the caring industry and supposedly these people are caring people ???? Oh well to battle we go again if nothing else to stop it happening to others in the future. Sorry my little rant over and I am sure everything will fine in the end but as they say bad things happen in 3's and I just need a little bad thing to happen to move forward!

kasianne

I decided to not wig it as well apart from being bald in the middle of summer in tropical north Queensland I decided that it is other people that seemed to have a problem with my baldness rather than me and my husband is completely bald as well so we made a right pair walking around the shops. His favourite pastime is to walk down the hair product aisle in the supermarket and declare how much money he saves every week on hair products and it is funny to look at the faces of passer by's there was the one time he stood there looking at shampoos and declared as people walked past that he wouldn't recommend that shampoo as look at my hair now, felt it was great to have a sense of humour about it and I have to say I was pleased I had a nice shaped bald head so all was good. Hope the rest of your treatments go well.

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