Hi Bryan GLad to hear back from you and I reckon that's great re researching. Being an engineer you would know enough to make sure the validity of sites and information that you are reading. So glad you had someone with you as that can be important, although I go alone these days ... no biggy to me really. Once you know what you are dealing with it is easier, even if it's not the greatest scenario. Bit like waiting for the initial cancer diagnosis the brain goes all over the place. I focus on keeping my brain in neutral during this time and although I don't always achieve the battle distracts me from going places I don't need to go to. I wonder if your treatment is related to some of the monoclonal treatment I had (for a different cancer). I should probably tell you I have had 2 serious cancers and one less so (just recently - sporting 5 stitches on my neck at the mo). Amelanotic Melanoma is not widely known and I often have to educated GP's on it. It is very unpredictable which in my case turned out to be great as I had secondaries in my lymphatic system with no known primary found. They initially suggested I had a month to live and that was 28 years ago this year, give or take a few months. My second cancer was Base of the Tonue BCC with a T4 N2 M0 and still here after that one. I had chemo, radiation which was combined with monoclonal - which incidentally seems to have very similar side effects as the ones you described. THanks for the site references and I will take a look some time and check them out. Also, others reading this will find them useful am sure. I was happy with my treatment and back when I was first diagnosed surgery was the only option recommended to me as they didn't have chemo that was effective except for slowing tumour growth and I went on the wait and see list for that. My professor that did my op was wonderful with a very sick sense of humour which was pretty good for me. 🙂 The oncologist that I saw was, back then, considered to be a world leader in melanoma and had many patients visit him from overseas. Not sure where he is now as I haven't seen him for many years. You take care and you are sounding much clearer in your post. Julie \ ... View more

Hey Bryan I have had amelanotic melanoma which is less predictable than melanoma. Have you got someone accompanying you tomorrow? It's tough having to try and explain to friends exactly what is going on when most don't understand. Hang in there and see what they have to say tomorrow and go from there. Thinking of you Julie ... View more

Hey Paul It took me a while to get back to normal. Just be kind to yourself and although we do need to take steps to strengthen ourselves it can be a slow process - don't be hard on yourself if it takes a bit of time. Julie ... View more

Hi Jen I had a T4 N2 M0 base of the tongue cancer. You need information, but just make sure you get it from the right place. An excellent source is the cancer council site and also the medical staff that you will be dealing with. Write down questions or concerns that you have and take the notes with you. They are absolutely right about how things affect everyone differently and treatments are different also. I had chemo and then radiotherapy combined with monoclonal therapy. There is a fair bit of help available and the social worker or cancer nurse at your treating hospital should be able to put you in the right direction as to how to access anything you might need. I am now in my 6th year post treatment and have returned to full time work, although not everyone is able to do that. One thing I found helpful was to not cross bridges till you get to them. All my best to you both. :) Julie ... View more

I was supposed to go through meno with chemo ... finished chemo and then radiotherapy and six months later; blood test and not even peri hahaha Not even sure if I have gone through it yet. Maybe I will get that checked again. ... View more

Not offering false hope but my first cancer I wsd told I might only have a month to live ... going on 28 years since then xx ... View more

Any cancer diagnosis is scary. Stage IV does not always mean terminal but I get where you are coming from. I had a stage IV cancer and it was my 2nd cancer. Just recently been diagnosed with a 3rd tye of cancer and waiting for specialist etc... Here we go again! Hope you are feeling better after unloading. Julie xx ... View more

HOpe you find someone to talk to. It is tough to deal with cancer and all that it entails. Tough enough to lose a parent at any time. You know that what is going on with you is not right, so here's hoping you can find a way to get it into perspective. I think we all struggle from time to time to not worry or panic over things that could well be something else. I try and work on the premise that it is nothing until I am told otherwise and work really hard to keep my head in that place. Hope you are feeling ok at the moment and that you can find someone. I know the cc has a help line that you can use if you feel the need. Julie ... View more

Happy New Year George and to all on here. Julie ... View more

I don't know of any groups Jodii, but one thing, don't give cancer more than you have to!! I know it's hard and it affects us all differently, but ultimately you have to work towards taking back your power. Live in the here and now and be mindful of what the future holds. Julie xx ... View more