March 2020
1 Kudo
Gday Archie, Craig here. Glad to hear you are on the mend, the mouthwash does make a difference so keep it up and use as necessary, I found in the early stages that regular use helped the healing progress faster. Especially first thing in the morning after waking. My first Oncology visit was 2 weeks after the last treatment of radiation, but I also underwent Chemo at the same time so there were different things happening with me. I can't say much about the MRI as I never had one at that stage of my treatment. I did have one 6 months after to make sure it hadn't metastasized to my bones as it has better resolution and also to find out what damage had been done to my shoulders during surgery. Sure it takes longer than a CT but it can show more detail for your surgeon and other medicos to make their diagnosis. Hope this helps. Craig
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March 2020
1 Kudo
Hi to all I AM STILL HERE. Its been a roller coaster ride for the last couple of weeks but I have come out the other side. As you know this disease known as ACC can be a cruel master and unrelenting in its course, at least it has in my case, I was to see my oncologist today to review my last CT scan to check on the progress in my lungs but I received a phone call to cancel the appointment due to illness. My specialist is not feeling the best, I hope he gets well soon, but it brings things into sharp perspective, it is not all about me all the time there are people tending us who are under the pump as well. He didn't look at the top of his game last time we met, he is a good person who cares for his patients and I wouldn't have any other treat me. I will wait until he is feeling up to the task and see him for the results of the scan. I have no doubt that all his patients feel the same as I do about him. To every one keep your chin up and keep talking to each other so we can pass on knowledge gathered. Craig
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March 2020
1 Kudo
Gday Wombat I am sorry to hear your in pain at the moment keep up with the drugs. Try the eggs raw in a smoothie with plenty of ice to make it cold. The old egg flip with vanilla and nutmeg. It does get better mate but it does take time and we are here to listen when you need to vent or ask a question. Craig
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March 2020
1 Kudo
Hi there Archie, Craig here. Happy to hear from you again, I found that if I stewed the meat ie curry, sweet n sour or any other flavors that you like helped to soften the meat to make it more easily chewed and swallowed and lots of gravy. As you say mashed veg is all well n good but can lack taste so try olive paste or anchovy paste in the potato. Carrot and parsnip mash is another old tried and true side dish. Vegemite and mashed spud are another old one, use plenty of butter to help to swallow it. Noodles are also a great alternative as they are slippery to eat, filling and combined with a good sauce that can be nutritious and tasty. As you already know sweet and sour is the taste profile that seems to be the end result of radiation therapy, it does change gradually, I have noticed different taste profiles coming back. Plenty of water is always helpful when eating and swallowing. You need to hydrate to help thin the saliva. It seems that we become nocturnal after treatments, I think its the nana naps throwing the body clock out of whack plus the after-dinner mints we take after treatment, I had trouble sleeping after being zapped, made me grumpy too. Catch you later Archie Craig
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March 2020
1 Kudo
G'day Wombat, Craig here, happy to hear that you are nearing the end of your radiation treatment, sorry to hear that you are in a lot of pain because of it. Really not that much helps at this stage but I am glad that the chewy does, I can't chew gum as I lost part of my tongue so a product called gelclair helped me to maintain moisture in my mouth. The only setback is you are not supposed to swallow it although there are alternate fake saliva products that you can and they are for the throats lubrication after radiotherapy. Ask your nursing staff/radiologist/oncologist or doctor about them I'm sure that they can help you. My tumor was at the sublingual and submandibular glands, but my scar runs from behind the right ear to my chin center line then across to my left carotid, known as the bowtie, so I also have no feeling in my right ear below its center, it's a weird feeling I can tell you. I was told by my ENT surgeon, after the operation, by the way, that nerve damage can happen when they operate in these areas and that I may never regain feeling again. And as I have a stomach PEG it was not a problem for me to '' eat or drink '' but a sore throat is still a pain in the neck if you'll forgive the pun. My thoughts are with you and I wish you a speedy recovery and a comfortable journey home. Craig
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March 2020
1 Kudo
Hey Archie its good to hear from you. Only 8 to go, they should fly by now, I know that it went by quickly for me at that stage. The radiation can start to intensify in the sites around about now, just so you know. I had it towards the end of my therapy treatments, its a trait of radiation. Keep an eye on your wound sites if you have any and moisturize as required. Best of luck Archie. Craig
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March 2020
2 Kudos
When I was first told I had been diagnosed with cancer it was in a hallway as my wife and I were walking behind a young doctor to the examination room to review the results of a biopsy. I guess it was his way of breaking the news to me, not a very good start to our doctor-patient relationship. What am I saying?. I think that a conversation has to be had between the doctor and the patient on terms that are comfortable for both. The young doctor in my case was not emotionally equipped to deal with me on his own and I feel sad that he was thrown in at the deep end, but this is how medicine is handled today, without senior guidance on hand to shape his bedside manner. It was to became an issue between us later in my treatment. Me being a'' tear em a new one in their back and climb in'' type would be an overriding theme in my conversations with him and my wife. Thankfully I got a grip on my rage, for that is what it was, it was not his fault I had cancer, or my wife's for that matter. But it did come to a head when my feeding tube had to be reinserted after coughing it out, as I had a tracheal tube fitted my throat was constricted and it wouldn't go back in but he insisted that he would succeed, I DISAGREED after the second attempt, he then trod on my bare toes and two drip lines as he tried to finish what he had started. I spat it and kicked out with both feet catching him squarely above both knees, you can imagine the result. I ended up getting a PEG later that day which is what I had asked for when the tube was giving me trouble in the first place. I had already researched the outcomes of my surgery before I had it so I was prepared for it to some extent. That was a What did you just say? moment if ever there was one. Craig
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March 2020
How did you like the 99 bends on the way out? Coming in that way is a real eye-opener. Now they have trees as well. Craig
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March 2020
1 Kudo
Sorry to hear about your upcoming procedure Missy413. I have ACC in the form of saliva gland cancer that infiltrated part of my tongue so my surgeon had to remove the affected portion, it was also present in the floor of my mouth and two saliva glands. You are no doubt talking to an Oncologist- Chemo team as well as your ENT and Plastic surgeons, if not, why not. Don't be afraid to ask stupid questions, they are only stupid when you find out you should have asked at the time, if you don't know what they are talking about say so, don't take'' I DONT KNOW FOR AN ANSWER'' its not their life in the balance. But in the meantime, how are you dealing with the news that will change your life? I was not a happy camper for a while, but if you ask my wife I never was but that's another topic, and threw all the toys out of the pram. I think before I act now. Maybe you won't have a bad situation after the procedure so we shouldn't put the cart before the horse just yet. I wish you well Missy413 Craig
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March 2020
1 Kudo
Thank you Budgie, I did have a great weekend and I spent time with my beautiful wife. I don't know if you have heard of Queenstown, it is a small mining town on the West Coast of Tasmania, remote and stunningly beautiful, it is a 2-3 hour drive through national parks and reserves from the North West Coast where I live. Most envigorating Craig
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