Hey, I'm sorry that your cancer is terminal - I just wanted to say a few things about that: 1) I was given six months to live (more than 3 years ago). Although I had a chance at curative treatment, knowing that your expiry date is looming is a horrible thing to deal with. I recognise that. 2) BUT … you're still alive. Still viable. We all have to die. Unless you're Dracula or a comic book superhero, we all die and there's no coming back (that I know of). But you're not dead yet. A few houses down from you there's probably a child living a happy, delighted life, untainted by the fear of death .. and yet they are doomed to die tomorrow. It's tragic, a kick in the guts thing - but it's just how the system works. It's inescapable and often unfair. 3) Therefore - the real kick in the guts regarding death, impending or unknown, is .. like many things .. the FEAR of it. I think for the most part people innately fear change - and there isn't much bigger change that dying. The problem with fear is it contaminates all the GOOD stuff. The way modern society is reacting to coronavirus is a good example of that .. I think events are largely coloured by our modern obsession with self & drama, and a heavy dose of fear. I think the paramount thing is to not allow the fear that comes hand-in-hand with cancer and death to rob you of all of the remaining smiles and delight that is available to you. 4) Even though your cancer may be terminal, I think the opposite of fear is hope - and I personally would try to find & hang onto some of that until the last possible moment. Science, treatment methodologies - it's all in a state of flux. I've mentioned before a relation who did wind up dying of cancer, but he was in palliative care and had weeks to live. They randomly offered him a new immunotherapy trial and it extended his life by about 5 years. Five weeks to five years is pretty good, I reckon. Anyway, as long as we are still alive, we don't know precisely when we will die. Even as pain and fear weave themselves into our lives, we still have tools to try and fight back. Even if we don't completely succeed, even the small wins reward us with some kind of quality of life result. So yeah, mindset is (just in my opinion) important, you can flag your facebook status as "I'm going to die soon", or you could do it as "I'm not dead yet". I think the latter is much better. 5) Mate, when you do pass, I'd ask you to consider setting your frame of mind as this: it's the only true human adventure. The only true and absolute unknown. We don't know what's going to happen, and we all get to find out. No reason to hasten it, that's stupid. But when it happens, that's the back-handed gift of it .. no matter what faith a person has, nobody truly knows the deal. Anybody who says they do is lying (to themselves at least). As equally possible as heaven, hell or nothing, is that you gasp and wake up coming out of the Matrix, surrounded by machines. I know it's probably shit advice, but if there's any way to transform the posture from anxiety to adventure, it might help with squeezing all available fun, joy and love from the rest of your life. The anxiety shit tries to steal all that stuff. It tries to corrupt the life & possible happiness that remains available to you. 6) Now this is just a personal quirk, but if you haven't already, it's worth thinking of any little leave behinds you could do. For me, I'd want to do funny stuff - record little messages for people I care about that might initially help with their grief, and later make them smile in memory. A terminal prognosis is a really shit show, no doubt - but it also means that we can prepare ourselves and the people around us a bit .. I'd probably even have a crack at curating my own funeral. Sing an awful karaoke version of some wildly inappropriate song for them to play while people walk in. Dunno. I just think it can be as bad or even worse for the people in our lives, so it's nice to wind them into the equation as much as possible. It's also a great distraction. But yeah, you're not done yet. We're connecting here, right ? You're a viable, important passenger on Spaceship Earth. Good luck with everything - take my remarks with a grain of salt if any of it is annoying or distressing - but if there's anything in there that is of benefit, take it and run with it, with my blessing. All the best, amigo.
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Hi, I'm David, and I was diagnosed with stage 3b Hodgkin Lymphoma in June this year, and currently am in my third cycle of chemo. Apologies for the long post, I am a bit of a story teller.... I consider myself to be extremely fortunate, which may seem strange after a cancer diagnosis, but I have many things to be positive about. Firstly, Hodgkin Lymphoma while both rare and malignant, is generally well understood and known to respond well to the established treatment regime (ABVD chemo). It also responds very well to newer immunotherapy treatments. Secondly, I am extremely lucky to be married to a senior Radiation Therapist with 25 years of experience, although she is not happy about being on the carer side of cancer treatment rather than on the treating professional side! This means that we know a lot of the people in the local cancer care centre personally, and while I don't expect any special treatment, it is reassuring to be dealing with people who know you. Thirdly, my treating Hematologist is held in very high regard by all who have dealt with him, he calls a spade a spade, and is approachable, thorough and caring. I am able to talk with him frankly and comfortably, and be my own advocate without upsetting anyone. Finally, I appear to be coping with chemo reasonably well, no nausea or vomiting, minimal fatigue, no digestive issues, and generally ok most of the time. I am able to exercise and do so on as regular a basis as I can (this is really important to me as a part of my treatment). However, I do get the chemo fog quite noticeably (I spent ten minutes walking around the house looking for my mobile phone, all the while talking to my mother on it...), and it appears my bone marrow is copping a hiding. I have been neutropenic and anaemic, and have had to have blood infusions and inject myself with courses of GCSF (stimulates the production of base white blood cells) to deal with this. Whilst I am something of an optimist, I am concerned about my emotional state, specifically in relation to the effects of the treatment drugs. Somewhat unusually, I haven't felt a lot of the negative emotions that a cancer diagnosis normally brings, mostly due to the factors detailed above. I have lost my scalp and facial hair, but this doesn't bother me as I was fairly bald to start with, although I miss my beard which was a bit of a chin pet.... But I have been suffering from stress/anxiety related physical issues (which I have had intermittently in the past 20 years) to the point where I have been through the local emergency department three times in the last 2 months (2 admissions with no indication of any physical causes). I have had to give up my part time work as a result of this as well. I am seeking professional support through counselling, and I have had discussion with my GP regarding the emotional side effects of some of the support drugs (Dexamethazone in particular), but I was wondering if anyone has any insights into this side of chemotherapy at all? Cheers! ☝️
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I had stage 1 tonsil cancer in May of 2018. I didn't have surgery, but I did have the 3 chemo/ 35 radiation standard plan that they give. My side effects are nothing like yours. I am 147 days past radiation. My dry mouth is getting better. My taste has returned for the most part. Some things still don't taste right. I do have constant ringing in my ears, and I am now experiencing neck pain and stiffness.
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.