i guess this has been a while in the making. As an avid social net worker, i didn't feel there was a place i could really share my experiences as a carer with anyone. so for the past 4 months i have held so much in and its time to let it all out. My dad discovered a bump on his chin a while back, we all thought it looked like an ingrown hair and he isnt a huge fan of doctors at the best of times. after a lot of pleading he took him self off to the local GP who sent him for xrays and ultrasounds. a few days later we spent the day having a biopsy amongst other tests done at the hospital. where they confirmed my dad not only had mouth cancer... he had the 2nd largest mouth cancer the specialist had seen. Having lost my mother to cancer when i was 13 my dad knew what to expect, but it brought up painful memories for us all. My dad and i spent days going to and from the hospital and in the end they could find no way to cure the cancer. However they suggested a few options to help him they best they could. My dad did a "punch" course of radio therapy. it has been the single hardest thing ive watched anyone do in my whole life. 3 straight weeks of treatment. with some horrible side effects. for the 3 weeks of treatment i shut off my own feelings, i concentrated on everything and anything he needed. i call it my "on" mode. Then when im alone i can go in to "off" mode and try to cope with watching him deteriorate and get weaker. I also have two brothers... who were both hit very hard at loosing my mother. While helping my dad through everything i was also trying to help them and support them with what we are facing. My dad is now 4 weeks post treatment. I haven't been able to get him to eat anything since the radiotherapy because of the mouth ulcers (his whole mouth was lined with them.. everywhere and anywhere) and the mucus build up has made things hard to swallow. No matter what i try to offer him, he refuses and then gets cranky and frustrated. He has lost about 13+ kg since starting the treatment. I got so worried last week i rang the hospital for advice, but seeing as it was Christmas i couldn't get in touch with anyone familiar with my dads case. So i called his GP who was just so fantastic. He came up and saw my dad the next day, i think just for him to hear the things i was saying come from the mouth of a professional made all the difference. He is really trying to get at least 1L of fluids a day now and even the fact he tries makes me feel better Unfortunately my friendships have made my life terrible and harder then it already is. My closest friend of 13 yrs called me selfish and irrational yesterday, it hurt more then anything else she could have said to me. During my dads treatment she never called me and just asked how i was coping. she just wanted to talk about the dude she hooked up with. She did offer to go out for coffee with me and help me get my mind off things but thats easier said then done. Looking back on my life i know i am not a selfish person. Sometimes EVERYONE gets irrational, but selfish.... that's just not me. I'm always a shoulder she can cry on, but when its my turn im left crying to no one. I guess ive just realized i cant do everything alone. My brothers though, have started to see this and have stepped up a lot. I have the most fantastic fiance. BUT... He lives in North Carolina.. in the USA. even he cant be there all the time, but hes been my emotional backbone for so long now. For christmas this year he bought me a two week trip to see him ❤️ he knows i need the break, and my dad need a break from me too. well i guess i have rambled on enough for now.... this is just the start of my story. Take care. Manda (shennanigans)
Occasional Contributor
Hi Manda, Firstly I'm sorry you have to be on this journey, you and your family all sound very brave, (even though you may not feel that way... I know when people tell me that i think..'not really...I'm just doing what needs to be done!') I don't know what its like to loose a parent to cancer, but my mum had cancer when i was about the same age you were. I'm now 32 and was diagnosed myself in September. It doesnt sound to me that you are a selfish person, this to me would mean that you would not be there to show your family (especially your Dad) the love and support that you are. Unfortunately it seems that not everyone, even those we love dearly, has the capacity to try to understand what this cancer world can be like or cope with it. But what you are doing (in my opinion) must be one of the hardest and most selfless things anyone could do. I don't know what i would do without my husband and Mum and am so grateful for everything they are doing. I hope you are able to enjoy your two weeks away, yep sometimes a break from eachother is needed, i can get that!! :-) Take care and best of wishes for your Dad, and all of your family. Neen x
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Hi Manda So sorry to hear about you Dad, it's so devastating getting the news that the cancer cannot be cured. I care for my Dad & it's not easy seeing the one you love fade away. My dad has throat cancer & it took us 3 months to convince dad to go see a Dr, in Oct 2010 dad got a husky voice but dad said it was a reaction to the fumes from the deck oil that he used & he didnt wear a mask..During those 3 months dad did go to his GP but she kept prescribing antibiotics !!! Finally Mum took him to the Mater Hospital & he had a CT Scan, 3 days later we were taking him to a ENT Specialist, then into hospital for a biopsy, 1 week later we were told he had a malignant tumour on the right vocal chord...Dad had 3 weeks of intense radiation...that was so cruel, I know what you mean about the excess mucus I don't know dad slept because he was constantly bring mucus up, in June 2011 we were told the tumour was gone..we were so happy..In Sept 2011 dad went back to the ENT specialist & he found a tumour on the left vocal cut a long story short dad had a total larengectomy on 29.09.11...what was meant to be a 3 wk hospital stay ended up being 3 months, dads wound dint heal due to the radiation, this also caused a fistula to the saliva glands, dad is now fed thru a peg in his tummy. we got dad home for one night & the next day he ended up in ICU with Aspiration Pneumonia..He has been in for 2 weeks now but since yesterday he has improved 🙂 We pray that dads wound will heal so he can have a flap put in, but at the moment we just take each day as it comes. Sorry for raving on but we are going thru a very similar exp..I am lucky to have Mum & a great fiance to help me thru this..If you ever need to chat just msg me. Sending hugs your way Alison 🙂
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