In our latest Community News Blogs, we are talking about self-advocacy in cancer care and living with cancer in addition to a pre-existing health condition.
Self-advocacy means actively speaking up, asking questions, and making informed decisions about treatment.
Macmillan believe that everyone should get the very best cancer care and treatment, no matter what. If you’re worried about the care you’re receiving, or feel you’re being treated unfairly, Macmillan can help:
A cancer diagnosis often comes out of the blue opening up a vast vista of unknown territory. A language that I don’t understand. Will I live? Is my treatment the right one? Are the doctors right? Can I get a second opinion? Can I cope with treatment? Endless questions with few answers.
This is where our groups step in. In head and neck where I live we spend much time guiding people to find a solution. Imagine this. Radiotherapy for throat cancer is the gold standard treatment. It involved pinpoint accuracy in delivering it to the same area every time. The only way you can achieve that is to have the patient completely immobile. To this end we have a thermoplastic mould made which covers our whole head extending down past our shoulders. We are clipped down onto the treatment table for fifteen minutes at a time five days a week for six weeks, unable to move, unable to see. But wait! What if you’re claustrophobic? This is the stuff of nightmares. Cutting eyeholes in the mask makes it bearable. The number of times folk have come along in hysterics saying their radiographers refuse, quoting any number of excuses. I can’t recall a single instance of persistence not winning over and such mask tweaking being refused eventually.
A small but powerful thing; forum power.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Which is worse? Treatment or living with the cancer? That is my question. God's will is all I have.
I wish I could answer that. From my perspective the treatment was pretty awful. Mouth and throat burned badly unable to swallow for weeks, but the cancer would have very gruesomely killed me.
QOL is important, more important than many medics appreciate. At first all we want to do is live. Sometimes we change our minds.
I was brought up a Catholic. Us Catholics know all about suffering. I’m not a believer any more.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
