Hi everyone, I haven't been on here for sometime. Mainly still trying to get answers. I found this letter while I was looking for something else. This is what I sent to my family, with what I was going through at the start of my journey.   I am not sure how to start here but I thought it would be easier to put it down on here than talk about it. I am really confused as what to do! There is a lot that I have not said, or I might of, or have not asked the question myself. Ok my quality of life after treatment. Yes no one knows what will happen, but the worst is something I need to consider. From the Dentist: All my teeth can rot within 3 months; I must use 3M Tonsil 5000 toothpaste for the rest of my life to try and not lose any more teeth. If I need any Mager work done on my teeth, they must contact Peter Mac Dentistry before they do as besides gums will not heal, I will get jawbone rot. Everything is for the rest of my life.   Radiation: Damage to muscles in the mouth and neck, which can affect my speech, swallowing and eating. Ulcers on the inside of the mouth, skin on both the outside and inside that will be as if I am sunburned. If I have trouble eating and lose too much weight, then I will be fed through a tube. Some of these do get better and some you have for the rest of my life.   Chemo: I still need to find out what it is going to do to me. Some of the things are Nausea and Vomiting, Taste and Smell changes, Infection risks, Low Platelets, More Mouth Pain and Ulcers, Diarrhoea, Appetite Loss, Tiredness and Lack of Energy, Nerve Damage, Kidney Damage, Hearing Changes, Low Blood Magnesium - Potassium - Calcium levels, Low Red Blood cells and Hair loss.   Yes, I understand that I might not get all these problems but then again, I might! No one knows. So, my quality of life is not looking Rosey.   Then on top of all this the Radiation Oncologist is confident that if they get all the cancer, they will cure it. But if they miss one small bit of cancer then that is it. They cannot do anything as they would not be able to use Radiation or chemo to treat it and, I would have about 2 years to live!   So yes, my concerns are my quality of life after treatment even if I only get some of these problems and weather, they all fix themselves or not? No one Knows but if they don't then what sort of life will I have? And on top of all this if they miss a bit of cancer then I am going through all this for nothing!   Do they know where all the cancer is? One minute I have cancer, then I do not. I am having Radiation on my right lymph node and right Tonsil, now it is both sides?   I know no one can make the decision for me, but I thought I needed to share this with everyone, how I am feeling. I do not expect anyone to reply, as I know there is nothing anyone could say to help me make my decision and believe that you would all support me with which ever decision I make. I do need to ask more questions from the Radiation and Chemo people to help me make a better decision about what is best for myself. I know I can start treatment and stop if I am having trouble with it. Thank you as I did need to get this of my chest. As living on my own does make it hard not having someone to talk to about it. I know you are all there for me as are really good friend. I will get through this whichever way I go.   Your son and brother.   I didn't add that the main reason I went through the treatment, was because I didn't it was right for my mother having to bury me.   My after effects have been dry mounth, ringing in the ears and Phrenic nerve palsy, which causes my lungs to collapse, In the end my quality of life isn't wonderful.    good luke to everyone on their journey. ... View more

17 months after I finished 7 weeks Chemotherapy and 35 doses of Radiation therapy, I have Phrenic nerve palsy and Diaphragmatic weakness. Caused by either the Chemotherapy or Radiation. No cure and my left lung keeps collapsing.  Has anyone else had heath problems from thier treatments? Dace. ... View more

I'm wondering if anyone else is having any physical problems after theit treatment?  I don't know if I had any underlying elements before I started  my treatment, but I was a courier, so doing between 20-30 thousand steps a day.  10 months after I had my last treatment, I'm stuggling to walk for 5 minutes. I had a tumor removed from the base of my tounge and right tonsil, had cancer in my right lymoh nodes. I received 35 doses on my right check and neck, 7 weeks of Chemo. I got small blood clots in my arms from the Chemo.  I struggle to breath, have blood oxygen levels that drop to under 80% at night, sore right jaw, sore right neck, my right shoulder doesn't move properly, still have trouble swallowing where food/drink goes into my lungs. I'm not really getting any real answeres. I've been told a small part of my left lung base is collapsed, my left diaphragm doesn't work properly, I have emphysema, asthma, I have a lazy heart valve, CAC in a pulmanry artery, and who knows what else. But none of these are bad enough to cause my breathing problems. David.   ... View more

Hi everyone, I'm wondering if anyone is having trouble with after effects from Chemotherapy and Radiation treatments? I'm 60 year old male, I had head and neck cancer last year, I had 35 Radiation treatments and Chemotherapy of 5 weeks of Cisplatin and 2 weeks of Carboplatin / Paclitaxel treatment. It knocked me around a lot. I ended in hospital with what they thought was blood clots in my lungs, it turned out the base of both my lungs had collapsed. 11 days on oxygen, I was sent home. 5 months later [ and no follw ups ] I'm still having breathing problems. I have seen a Respitory Specialist and after scans and test they found nothing wrong? I have numbness in my forearms from the same time, and it doesn't happen? I have read up on everything that has been reported in my scans and tests. The damage the Chemo and Radiation can do, I'm wondering if a specialist that doesn't specialise in caner treatments, really understand what it can do to the body? Chemotherapy can damage the hair inside the lungs that absorb the oxygen that transfers it to the blood, it doesn't show up on a standard ct scan? [ from what iv'e read. ] I'm just wonder if anyone else has had delayed after effects after their treatmens?                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                               D                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                 ... View more

In February 22 I was diagnosed with with cancer in my lymph node in my neck, after a few biopys, I was at one stage, thought that I didn't have cancer because all tests except for an asperation that was done on my lymph node at the start came back negative. I had 2 tumors removed from the base of my tounge and from my right tonsil, that came back negative. After 35 doses of Radiation and 7 weeks of Chemotherapy my cancer is in remission. I do wonder if it will come back because they never found the primary cancer? I am staying positive. I have enough after affects from the Chemo to keep my mind busy. David.1 ... View more

Hi everyone, I'm interested in chatting about how everyone else is going/has gone through with having Chemotherapy and Radiation treatment? I had biopsy's done on my right hand side lymph nodes that came back positive, Had biopy's done on base of tounge and right tonsil which came back negative. Long story short I had a tumour at the base of my tounge removed and my right tonsil all the way back to the neck mussle. No primary was found but another biopsy from my lymph node under my chin came back positive. So I was put through 7 week's, 5 day's a week Radiation { 35 }  and all up 5 week's, once a week Chemotherapy. Although the first treatment was a dose that was to last for 3 week's. I had a lot of problem's with hearing loss, ringing in the ears, nausea ect. Changed to weekly and still had problem's. I ended up with blood clots in my arm's where the Chemotherapy was administered.  Ok I had the mouth problem's with ulcears, sorse's, trouble eating, loss of taste, finding food to eat without forcing it down, swallowing and even talking. But the affects from Chemotherapy have been worse than I thought? Spent all up 3 1/2 weeks in hospital from  Blood clots traveled to my  lungs, temperature going above 39.1, swelling in my feet and knee's, very lethargic { although the painkiller's, blood thinner's } wouldn't help. It's been 6 weeks since my last Radiation treatment and have been told it will take between 3 to 6 month's before I might be back to normail?   And now it's waiting 3 month's before I get an Oncologist allocated, have a PET scan to find out if they got it all.  So I was if anyone else was/or is  in a similar situation? The not knowing and not having someone to talk to makes these 3 month's really hard. David.  ... View more