October 2011
Hi Stace, I am so sorry that you are suffering from this disgraceful disease.. I am a carer for my beautiful fiancee, so i can tell you from that point of view only, I know that most people only ask how you are out of concern and some people are just beig polite, but with those closest to you, in my opinion, i know how i would feel if Terry wasn't honest with me about how he is feeling, although we are very close and i don't even have to ask how he is, i just get a sixth sense about it and i know even if he tries to lie to me and say "no im fine"i know that its not the whole truth, being a man he is very much the strong one and he hates that i have to look after him and he is fighting me all the way with his eating etc, but i just say to him, well you know what, tough cookies, im here to stay so you can love what i do or hate what i do and i will still do it cause i want you well and healthy.. we laugh at it most of the time, and i call him a whinger.. in a loving way of course, but i find thats the best way to deal with it.. my thought will be with you and hope that you have a good prognosis once you are through all your treatments, take care and let those who love you... love you.. they are strong enough to take it .. trust me. ❤️ love and best wishes from Debstar
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October 2011
Hi Stace, I am so sorry that you are suffering from this disgraceful disease.. I am a carer for my beautiful fiancee, so i can tell you from that point of view only, I know that most people only ask how you are out of concern and some people are just beig polite, but with those closest to you, in my opinion, i know how i would feel if Terry wasn't honest with me about how he is feeling, although we are very close and i don't even have to ask how he is, i just get a sixth sense about it and i know even if he tries to lie to me and say "no im fine"i know that its not the whole truth, being a man he is very much the strong one and he hates that i have to look after him and he is fighting me all the way with his eating etc, but i just say to him, well you know what, tough cookies, im here to stay so you can love what i do or hate what i do and i will still do it cause i want you well and healthy.. we laugh at it most of the time, and i call him a whinger.. in a loving way of course, but i find thats the best way to deal with it.. my thought will be with you and hope that you have a good prognosis once you are through all your treatments, take care and let those who love you... love you.. they are strong enough to take it .. trust me. ❤️ love and best wishes from Debstar
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October 2011
Hi Sylvia, thank you for your reply, we are on to day 11 of treatment, and so far so good.. Terry has fared remarkably well so far, with no pain, except the occasional headache which thankfully panadol will ease. He is however having a bit of a rough time with his throat feeling very tight and that closing in feeling.. They keep telling us to make the most of it and that it will get worse, but for now we are thanking our lucky stars that he is still so well.. Eating is going well as is his weight only fluctuating by a kilo or so either way, depending on what he has eaten for the day, I have been in my element cooking up a protien based storm for him, last night was an omelette with chicken, ham and cheese, that went down well apparently, Terry has said that his tastebuds have changed though and every thing has to have sauce or lots of salt and pepper on it for him to enjoy it.. so if thats what it takes thats what we do.. Tonight he felt like mince so i have made a nice kind of pie filling mix with gravy and he is having that with mash potato with lots of milk and butter.. just the way he loves it.. and its guilt free for now 🙂
He has tried the drinks the hospitals have given him with out much luck, he didn't like the taste or the texture but im sure when he needs them (when he has no taste buds) im sure they will be ok
We have been very impressed with all help and support the hospital have given us. They truly are a special group of people..
thanks for the support as well Sylvia, its very much appreciated by both terry and myself.
take care and stay well..
Debstar
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October 2011
hi andrew, my name is Deb, my darling fiance has cancer. we are in day 8 of treatment with radiation. when i read this it really struck a nerve with me, i am so over the insanely optimistic people who keep saying.. oh he looks great, you would never know he has cancer.. and that eternal.. she'll be rite mate, he will be fine.. omg i get so sick of trying to be positive, .. i am very positive but occasionally like tonight, (my son is moving out of home to darwin and my eldest has moved away 2 weeks ago for work so excuse me for feeling a little sad..) but when i say to people im having a bit of a down day, they always say.. öh you have to stay positive, you cant let it get you down..
like i didn't know that already and like i said i am very positive but... sheesh am i not allowed to occasionally be peeved and upset that this beautiful man whom i love more than life itself has this dreaded disease.. i wish with every breath i take that it was different, and occasionally yes it gets to me, but most times im ok..
sorry andrew.. phew got a bit passionate about that hey lol..
and i just wanted to know has any one else out there had sympathy pains ... i feel every thing terry is going through and i know when he is not feeling well.. like tonight i have such a tight sore throat, and he is feeling very tired and worn out with a bi of a tight throat.. its weird .. like we are the same person feeling the same pain, we even get matching headaches.. even when we are not together i know if he is sick, cause i feel it..
any way enough raving from me.. hope you are well andrew, and thanks for the licence to rant and rave and howl at the moon .. i may have taken a few liberties but hey, you get that, right???
take care from Debstar and Terry ..
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October 2011
thank you to every one who has sent messages, they are an invaluable source of support for Terry and for me.. We are on to day 7 today of his treatment, the days are very long with us starting work at 7am and working till 1pm then travelling an hour to the hospital, we have had several appointments in one day so far,with OT, Speech, Dietetics, Physio, and the Oncologist, so each day is around a 5 hour trip from start to finish.. wow we both look forward to falling into bed every night these days i can tell you that lol..
So far, terry has had minimal reaction to the radiation, i have been keeping a photographic record of his scar and the site they are doing the radiation on, and its getting redder every day, he also has lymphadeama and the swelling is getting a little more each day, the OT has given us massage techniques to use and they don't seem to be doing much to alleviate it so far, but she said it will take time to condition the body to make the lymph nodes work in the other areas in his neck. He has had a slight loss of taste so far, he noticed it especially last night when we went to my sons farewell dinner and he had a beer, he said it tasted like water, so thats it for the beer for now.. although he doesn't feel like having a drink anyway, but yeah it wouldn't taste of anything even if he did.
food has not been an issue so far, he is managing to eat most things, he doesn't like onion any more, and says it tastes very strong. He said that he feels like eggs a lot, so thats what we have been going for, lots of eggs in scrambled eggs, quiche, etc. He has also had a craving for milk so i have been making him caramel malted milkshakes .. he loves those. we were worried because he lost a kilo in the first week, but with my magic cooking skills i soon got that back on him lol.. the nurses were very impressed at my determination to have him well... I have told them he is my number one and i wouldn't have it any other way, gee those girls and guys are fantastic, what a special group of people those cancer care nurses are huh?
We have met some incredible people at the hospital and their strength is a great help to us, if there is any one who needs to just type me a letter to vent their feelings, please feel free as i know how helpful it is to me, to know that there is some one willing to listen to my ramblings.. Thank you all so much and I wish you all well.
best regards from Debstar and Terry
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September 2011
thank you all so much for your invaluable information and support,
as you all know this is a very scary time for both of us, and Terry has had 2 of 30 treatments so far, i have started taking photographs each day to monitor the site, as the site is quite extensive reaching from the top of his left ear right down to under his chin and across almost to his nose. the marks on the mask are quite terrifying when you see them, but we both know its a means to an end and we are hopeful that we will have a positive outcome after this is over.( after all we do have a wedding to plan 🐵 )
so the information we have from all of you has been very helpful to both of us.. thank you again and we will be trying to keep in touch and offer our experiences here on the forum for others who may be going through this as well... our very best wishes to all of you going through this struggle and to all of the wonderful family and friends and carers who help us through,
love and strength to you all;
deb and terry
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September 2011
every thing i had wanted to say and not known how.. well done and thank you .
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September 2011
wow.. that sounds amazingly excruciating, a very honest account and something that is hard to read. its a long hard road thank you for such a well written journal its helped us to know what to expect,, however hard it is to read, at least we now know .I hope things are going well with you? and that your battle with this dreadful disease has been won? we both wish you well..and thank you for your wonderful post.
best wishes from
debstar and Terry
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September 2011
1 Kudo
Hi Silly,
well what a day we have had, the planning session was good, very informative, and the specialist Dr Brian Bermeister is lovely,
we talked with all the support staff, cancer nurse, physio, oral care nurse, psychologist etc., all very lovely people... we have come away full of information and full of hope that this will be the beginning of the end of our cancer battle.. its only 21 days to go before we begin day one of treatment.. the day after my birthday actually, I'm very lucky to have T around for my birthday so its going to be a good day. Hope you had a good day,
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September 2011
1 Kudo
Hi Silly, just did some research into your particular type of cancer, its so close to what my Terry has, but also so very different, the same region of the face but different glands, he has Small cell undifferentiated carcinoma, its hard for us to find any one with this type of cancer as well as it is also a rare and very very aggressive type of cancer, maybe we are the only ones on the coast with " adenoid cystic carcinoma" and "Small cell undifferentiated carcinoma" its usually an older persons disease, the median age being 56 in our case, what the heck happened, we are 15 years ahead of schedule,, any way, its comforting to know that some one else has an understanding of the type of issues we are dealing with,
We are off to Brisbane today for the "Planning Session"so fingers crossed.. hope you have a good day, its sunny and warm out so hope you have a chance to enjoy it, take care,
regards
Deb and T
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