Perotid Cancer
Wed, 31/08/2011 - 10:05
My Beautiful Fiancee has Perotid Cancer, this is a very tough time for both of us as it was a very fast growiing aggressive cancer that started as a small lump next to his ear and in 3 weeks became 2 large walnut size lumps.. we argued because he didn't think it was anything to worry about and wasn't going to go to the doctors, Typical man i said.. but i had a gut feeling it wasn't right so i made the appointment for him, long story short, after an ultra sound and a follow up FNA ultrasound, he was diagnosed on the 10th june, Following the diagnosis we were numb for the weekend.. i mean we went into the doctors because my beautfiul man had a lump.. just a lump.. probably a swollen gland we thought.. boy were we ever wrong..
Our doctor sent a fax to the hospital and we were told that they hav a clinic once a month that we could get into. after a week and a half i hadn't heard anything so i subsequently rang every day for a week to try to get an appointment as the lumps were growing at an alarming rate,i had finally lost the plot.. i was crying and beside myself with fear and i wasn't going to take no for an answer and when i was told by the hospital that we couldn't get an appointment till late august early september and that was that
eventually after an hour on the phone and many transfers to different supervisors and departments later, i was able to get an appointment a week later.. by the time we got in to see the specialist.. the lump had increased to a stage 4 aggressive cancer, one week later he was having a radical neck dissection and has lost 2 of the nerves in his face along with the nerve to his eye being slightly damaged, the specialists have told us that had i not been so assertive and insisted that things were done NOW, when they did the surgery they would have closed him back up and sent him home to enjoy what life he had left. He is still recovering and we are yet to start the radiation therapy. next week is the beginning of our new journey to 7 weeks traveling 80kms each way to the hospital for treatment every day 5 days a week .. My reason for posting is to be able to talk to other people supporting partners with cancer.. Do you feel guilty for wanting and needing a little attention for yourself.. It would be great to chat to others about their experiences and to hopefully get some tips on how to deal with it from a partners perspective..
thank you all and i wish you peace and happiness
deb
Thu, 01/09/2011 - 06:27
#2
Re: Perotid Cancer
Hi Maddie,
thank yo so much for posting a reply,
i have had a rough couple of days with my beautiful man, we are at the stage where he is feeling good enough to go back to work and is on light duties, i too have returned to work and so our lives seem a weird sort of normal at the moment, sometimes i forget but not often, i feel very selfish and very much out of control this week, i hate feeling this way as i know i want him to be fine but im so scared that this is a false sense of security because i also know whats just around the corner in regards to him feeling sick and sore and in pain again..
its so nice to know that there are other people feeling the same, i don't like to talk about how i feel with people as i feel very guilty about the attention being taken off him, i mean he is the one with the life threatening condition not me right?
boy its hard some times, just wanting to have a little bit of me time is something i think im going to have to grant myself,
yesterday i actually had a day off and you know i didn't do anything .. just sat in the sun and read my book that ive been wanting to finish for months. it was so great to do what I wanted for a change, it certainly helped.
i agree with you that it has bought us closer, so close that i know when he is in pain or if he is having a bad day while he is at work, its like a wave of feelings come over me while im at work, when we get home and i ask him was he feeling sick or was he in pain to day he always says yes..
thank you for the chat, it really has lifted my spirits.
I hope you and your partner will have a positive result of all this treatment and that you will go on to live a happy and healthy life together,
our very best wishes to you both,
deb and T
Thu, 01/09/2011 - 01:38
#3
Re: Perotid Cancer
I am not supporting someone with cancer. I am the one with it .I just wanted to say that with the travel to and from the hospital for radiation you may be able to get a petrol allowance . I live in Qld. and we were told about this after a couple of weeks into it. I don't know if all states have this but you can make enquiries.
Also ,why didn't the doctor arrange the hospital appointment ? Funny set-up!
Thu, 01/09/2011 - 06:17
#4
Re: Perotid Cancer
Hi Silly,
thanks for the support and information, yes im in qld and the hospital actually told us about the petrol allowance, something we will be taking advantage off i assure you.
as to the hospital appointment, unfortunately we are at the mercy of the public system and therefore were told to wait till we recieved an appointment date in the mail.. as i said in my post my darlings cancer was a very very aggressive type and extremely rare in some one of his age, not that i knew this at the time of the diagnosis, but i had a gut feeling and i could also feel his face getting bigger and bigger each and every day, thats why i called the hospital every day and after being told that the appointment date was almost 2 months away, i was not willing to gamble with his life and thats why i pushed and pushed to get a quicker appointment. I know they receptionists are only doing their job and i was told that he would have to go on the waitng list with all the other category 1 patients, and i understood this but as i said i had a gut feeling thaqt i needed to push the envelope and get him in quicker,
i have been a mum for 26 years and sometimes us women just know stuff.. this was one of those times.. my fiancee and i are extremely close and i could almost feel the cancer growing inside him, im just glad im a stubborn little thing and im very grateful that we have been given a second chance at life togther.
Silly, i wish you well in your treatment and i hope with all my mite that you have a positive outcome and you can beat this dreaded thing.. my thoughts are with you and your family for a full recovery.
our very best wishes,
deb and T.
Thu, 01/09/2011 - 17:48
#5
Re: Perotid Cancer
no worries 
its very hard to talk to other people because they dont understand.. my partner and i are both in our young twenties so there arnt a lot of ppl around us that have been through what we have... reading in the sun sounds very good! its the small things that count i reckon.. making sure you do little things for yourself...
i also know when my partner is going through a tired stage, or sick stage it effects your health to.. if they have an up day then you do as well, if they have a down day then you follow along.. its a big emotional rollercoaster, but hang on because things do eventually get a whole lot easier...
i remember for the first couple of months i cried and cried and thought id never stop.. you kind of get used to the idea of 'living with cancer' and it becomes your life.. now for the rest of our life we will be effected by this disease.. hoping and praying it never returns!! when my partner was having radiotherapy it was actually easier than chemo.. he didnt feel tired or sick with it just burnt... it was a lot like sun burn actually! if you ever want to ask me more questions you can!
glad i can help in some way
all the best!
Fri, 02/09/2011 - 17:17
#6
Re: Perotid Cancer
What hospital are you talking about?
I had radiation just over a year ago at the PA in Brisbane. The staff there were extremely caring and compassionate .I actually missed some of them when it was all over. I guess in normal life people don't always really care when they ask how you are .
I am sure it is the same at any hospital.
Fri, 02/09/2011 - 20:34
#7
Re: Perotid Cancer
hi Silly,
I was actually talking about the first hospital we went through when he was diagnosed, the one where we had the surgery,Don't get me wrong, the whole Specialists Outpatients Clinic we went through have be beyond wonderful, they have been very caring and once we had our first appointment, nothing was too much trouble for them, when we had our first appointment they told us that we needed to wait for 2 weeks for the next clinic as it was a Friday afternoon appointment and we needed to get some biopsy's done and a CT scan which we didn't think was possible to do, but with a few kind words and a little persuasion to the wonderful ladies in the xray department,we were able to pull of a small miracle and have the tests done late in the afternoon, luckily we did, as the cancer was much further advanced than they first thought,(5 weeks from when we first noticed the lump till now and it was already a stage 4 cancer and the type of cancer it was is a very rare cancer), like I said in my first post, had I not been so persistent and pushed for the tests and the appointments, we would have been unable to do anything and the surgery would not have been as successful as it hopefully was, on Tuesday we start the journey to the PA as his radiation will be there, and so far they have been very helpful,
hope you have a wonderful weekend, kindest regards,
deb and T
Fri, 02/09/2011 - 21:55
#8
Re: Perotid Cancer
I was only asking which hospital because I was wondering about the radiation. I did not write it very well.Also ,I wanted to reassure you that the radiation staff are great and the nurses are too. I was trying to remember the daily distance we travelled. It was about 60 kms probably which means you may live not far from me or else fairly far away if it is in the opposite direction.I am on the Gold Coast.
Sun, 04/09/2011 - 10:28
#9
Re: Perotid Cancer
you probably think it very rude of me but i forgot to ask about you, how are you feeling? what type of cancer do you have? how long ago were you diagnosed? how is are the treatments comming along, have you finished or are they still ongoing?
T has Perotid Gland Cancer in his face and it spread to the lymph nodes in his neck and into his submandibular gland.. so he had all of these removed..
they tell us that he will be very sore and that his throat will be red raw and he will get very tired. something to look forward to hey? ..
Sun, 04/09/2011 - 09:05
#10
Re: Perotid Cancer
Hi Silly, yes we are on the gold coast too.. and its very reassuring to know the staff are lovely, we are getting quite anxious now that its only one day away. but im sure its going to be fine, its just a natural fear of the unknown that grips us occasionally,
hope you have a wonderful day, i will post more when we have been to the hospital on tuesday, xoxo
best wishes from Deb and T
Sun, 04/09/2011 - 10:02
#11
Re: Perotid Cancer
Did you have a planning day ? Maybe it's only in particular cases .With mine they had to do another ct scan and make a mask ,then take masurements etc. It then took a couple of weeks for it all to be worked out. So is Tuesday the start of radiation or planning day? Whichever itis all the best .The radiation itself is painless . The side effects depend on the area being treated but you probably know this by now.
Sun, 04/09/2011 - 10:14
#12
Re: Perotid Cancer
Hi Silly,
the Planning day is Tuesday, i guess we are worried what the new CT scans will show, as we are not sure if the opperation was successful at removing the entire cancer, so the anxiousness is quite over whelming at times. Only time will tell, Tuesday cant come quick enough but at the same time is too close..
thanks for the supportive messages, they certainly help me and i know T has been reading them and found them very helpful..
till after tuesday, fingers crossed that all goes well, will stay in touch.
regards
Deb and T
Sun, 04/09/2011 - 10:14
#13
Re: Perotid Cancer
Hi Silly,
the Planning day is Tuesday, i guess we are worried what the new CT scans will show, as we are not sure if the operation was successful at removing the entire cancer, so the anxiousness is quite over whelming at times. Only time will tell, Tuesday cant come quick enough but at the same time is too close..
thanks for the supportive messages, they certainly help me and i know T has been reading them and found them very helpful..
till after tuesday, fingers crossed that all goes well, will stay in touch.
regards
Deb and T
Sun, 04/09/2011 - 20:58
#14
Re: Perotid Cancer
Hi Deb, if they didn't get all of the cancer the radiation may take care of that but as you said the scans will tell you more.
With mine they couldn't get it all without more radical surgery(losing my eye) but were hoping radiation would do it. So far ,so good.My cancer is adenoid cystic carcinoma.It was in the nasal cavity,tear duct and lacrimal sac.Diagnosis was in early February last year,surgery in mid April and imrt(radiation) for 6 weeks in June and July. Checks since then have not shown any cancer.
Do you know if your partner is having imrt? It is used for head and neck cancers and for prostrate cancer.
I did not expect you to ask about me nor did it enter my head that you hadn't . You have more pressing things on your mind . All the best to you both.
hi there and welcome! i to am supporting my partner, he had stage 4 bowel cancer but is pretty much in remission one year on
its tough.. it puts a major strain on your relationship.. there were times i can say i felt like walking away.. radiotherapy and chemo made him grumpy.. he was in pain, felt tired and sick.. i used to make time for myself tho.. call friends, go for coffees, see a movie.. do things that make you relax and make you happy.. we fought a lot but it brought us closer.. we now know we can get thru anything together.. be as patient as you can, times can b testing!! im always here for a chat 