Dear Richard1,   Please do not apologise about how you honestly feel. I think your post is valid and I appreciate the reply.    I can’t lie that I too have had suicidal ideation all through my treatment, recovery period and even now I am in surveillance. They come and go and are for me, mostly a response to fear, anxiety and stress all converging at the same time. Not to mention the impact this has had on myself in all ways. I just honestly don’t ever want to do this experience again and am trying to find a new routine in life now.  I also have good days were I can ignore my anxious thoughts by distraction, but they do come back more intense on days were I haven’t slept well or have a upcoming appointment that could possibly bring more unknown or uncertainty into my life.  I work out one thing, to only be immediately supplied with something new to have to work out. It is just tiring and hard too, when you are on your own making all the decisions without some type of roadmap. And I often feel I have to hide that from people around me too. Because for them, it is over now. But for me, having had first hand experience of diagnosis,treatment and now surveillance, things are all too very real for me. And I will never forget them.   Perhaps though, it is step by step. And day by day. Some people have pointed out how strong I am for having gone through all of this. And maybe I should acknowledge that, because I genuinely don’t. I don’t think I am anymore special then anyone else. But I did make it out to the other side of this.  I just never want to do it again,so am so hyper vigilant about it.  Maybe the fear never goes away. It maybe just how I deal with that fear in the moment I am having it, that I should focus on. Cognitive behavioural therapy or something like that.   Thank you again and I am wishing you well. Milo01 ... View more

Hi Everyone. Milo01 here. Post Chemotherapy Update on my hair:   I am 6 weeks post chemotherapy. During week 3-4 post chemotherapy my eyebrows and eyelashes fall out. That surprised me as they had held on throughout chemotherapy. But apparently this isn’t uncommon.   However this week , 6 weeks after chemotherapy ended, I looked in the mirror and my eyebrows and eyelashes had grown back and very quickly too. Just 2 days earlier, they weren’t there. But here they are, about half their length, but the coverage is full. They are growing very quickly too. The clue for me may have been that where my eyebrows are in their shape, turned a blue black color. (I have brown hair and my eyebrows have always been darker than my hair color.) This may very well have been the hair regrowing under the skin, but hadn’t broken the surface yet. And I am now noticing the same color happening on my scalp that has been pale since I lost my hair. So hopefully that is a indication that my hair follicles have re-engaged and will start appearing and breaking the surface again soon.   But I didn’t just notice my eyebrows and eyelashes. My upper lip has grown back hair. AND my underarms have started regrowing too. And also downstairs. They are all growing quite quickly and are quite soft to the touch. I literally blinked and I missed it. My head hair fells really soft too and my scalp was a little tender for a few days, sort of like when it started to fall out. My leg hair never fall out but I maintained it and there is noticeable length of that hair too.   But I have been given good news by the Oncologist and am now under surveillance. So I wanted to write a reply and update to let others know, that the hair does indeed come back. There is hope and there is an end to the hair loss after treatment stops. I have been advised Scalp hair may take 6-12 months to be a chin length cut and that it won’t all be even as it first grows, as patches will grow at different rates. And that sometimes eyebrows and eyelashes can fall out again after they grow back. But that is a bodily process with the eye hairs and it eventually stops. I will have to wait and see what happens with my eyebrows and eyelashes, but I will take the hair growth that is happening.    I still don’t wear any headwear because it is still too hot for me. I go out in public all the time without it. Just a sunhat for the sun and I carry a beanie in my bag incase I do get cold. Sunglasses to protect the eyes from dust and wind. I really don’t feel self conscious. Don’t get me wrong, it is linked to my self esteem, not having hair. But I didn’t choose for cancer and chemotherapy to happen to me. So I don’t need to be self conscious or ashamed of my hair loss. I don’t need to over heat or be uncomfortable for the sake of others thoughts,feelings or opinions I am not asking for. It is about me. If I don’t want to cover my head or draw on eyebrows, I’m not going too. And I think after all I have been through, I definitely deserve to make that decision for myself. But as the weather eventually cools down and my hair won’t be long for winter, I will use the beanies and fabric headbands to keep my head and ears warm.   It has been a hard experience to loss my hair and it is still a experience as it grows back. But I have been able to navigate it. And you will too.   Milo01 ... View more

Dear Cindi54, So I had my Medical Oncology appointment and have been given the news that my treatment has been successful and they will now be putting me under surveillance. So no more hospital for 3 months. My specific terminology is “Cured”. So good news and a relief after nearly 5 whole months, day after day, being unwell and going from one thing to the next continuously. My brain honestly doesn’t know what to do but wants to have a big sleep. I was honestly so anxious and afraid to go to that appointment. I expected to be told something different, as that has been my pattern in life. But the Oncologist told me to start living my life again. And honestly, that felt so good. Although I don’t remember how to do that. My body is also wrecked,so I still have to recuperate.   But I can reflect and be grateful that this is my outcome. I know others aren’t that fortunate.   My hair is finally starting to regrow on my body, but not my head. Three days ago, my eyelids were bare and now, the hair is back and growing so fast. I blinked and it was back. So many places it was all gone, there is now some regrowth there and that is giving me so much hope. Something I haven’t felt mentally for such a long time. It is something I don’t know if I can fully trust is real yet.   There is obviously more in front of me in the future. This isn’t the end, even if it is the end of my treatment for this cancer, at this time in my life. You just never know what the future holds. But just hope for the best.   But for now,it is good news. And I will take that today. Thank you so much for asking, for caring and for supporting. Let’s still stay in touch.   Milo01 ... View more

Dear Cindi54, Just a quick reply, saw you had replied in my email. I successfully finished my chemotherapy, but I will go to the Medical Oncologist next week to get my blood test results and see where I am at. If the tumour markers are normal, then yes. It will have done its job. And it will be surveillance for the next 10 years by the hospital. I will let you know. Milo01 ... View more

Dear LynnG,    I just want to say hi and that I think you are incredibly brave and strong to be facing what you have and do. I haven’t had your diagnosis or experience. But I am wishing you the very best.   Milo01 ... View more

Dear Cindi54,   It is good to hear from you again. I hope you have been able to sort out your family situation.    I am looking into support groups, but my cancer nurse has tried to emphasise a balance between seeking support and immersing myself too much in cancer. And I must admit my stress is exacerbated at the moment about cancer. I am trying to recover from chemotherapy and mentions of cancer are everywhere. It panics me and then I spend a long time calming down. It is out of my control, what will happen next or in the future and as a analytical person, I see so many possibilities in front of me. So I will have to sit in the stress and discomfort until my mind sorts out where to place everything. However, I can always try things first like a support group and if they aren’t a good fit for me, stop for now.    I am trying to distract myself by doing a declutter of my space. But I haven’t even made a dent yet and I have so much to move on already. I may have to get a skip. How does one person have so much stuff? I really should have done this much earlier. But I can also donate so many good quality items to charity too.    I have spoken about myself a lot. And I thank you for that. How are you going in your life with your cancers current status? If it isn’t too triggering to ask. Otherwise, how are you doing? It is genuinely nice to be asked that. And I care about your answer.   Hope you are doing well, Milo01 ... View more

Dear Rose2023,   Thank you very much for your reply.    I have been receiving support from OCA since my diagnosis. But thank you very much for the advice and link, as others may not know of them. The Teal Support Nurses program has been very helpful since my diagnosis. And I am grateful that a organisation like this exists.    I wish you the best too. Milo01 ... View more

Dear Miranda_ccnsw,   Sorry for such a late reply. I was waiting to have a consultation with the Dietitian before answering.   I basically tried eating something simple for dinner one night last week, not hungry at all.Plain pasta spirals, with a sprinkling of salt and shredded parmesan cheese on top.A side plate size.  And bam! I smashed that meal. I actually couldn’t believe how quick I ate that. So the next night I tried it again, just a bigger portion and the same thing happened. I cleaned that plate up within minutes. And from there, my appetite has just come back. I listened to what my body wants to eat and I have been eating. I also dropped the nutritional drink in the middle of the day and have been hungry for actual food again. As long as I am not force feeding myself, I am eating. But the change was just instant with that simple pasta meal. I was trying so hard to eat the proper thing all the time, that I lost the enjoyment of eating. Taking away the one nutritional drink, made my stomach emptier towards dinner time and I wanted to have something to eat at this time. But I was a little hesitant to change things up. But feel better for having done it. I thought if it doesn’t work, then I can always go back.   The dietitian was really nice and a new one I have been referred to in my catchment area. They let me know that at my stage of recovery, the nutritional drinks are the supplementary component of my diet now, and that food comes first. Eat solids first and drink the nutritional drinks if I am still hungry in between. I am not where I was before in my treatment and the opportunity is there to change now and transition to getting my nutrients from food now. But that I don’t need to jump straight off the deep end. I can slowly transition. It felt good to be supported like that and not be pressured into doing anything.   My food choices aren’t the 5 foods pyramid yet, but they are food. And eating something right now is better than nothing. And that I can change slowly into more variety with time. That takes the pressure off me and is one less thing I have to try to work out with my mind fog.   My only question now is, what do I do with my leftover drinks? I ordered quite a lot to keep me going for a month. But maybe I will still use them as snacks or breakfast on the go.   Thank you, Milo01 ... View more

Hello Emma1,    I haven’t had your cancer, but I recently finished chemotherapy for my cancer. I can offer some practical advice.   If you have kind people around you who can offer you support then take it up now. Let them know what things you’d like help with and see if you can organise a schedule. If you have a pet, get help for them too. You don’t need to be very ill to have help.  Everyone copes with chemotherapy differently and everyday you can feel different. If you can have people help you as you begin, if you do get sicker, these people are already in place. Think about all the things you do now and recognise that there maybe times where you might not feel like you can actually do them. See the important things and prioritise them for help or assistance.   Fatigue and brain fog are 100% real. Writing lists can help you stay on track if you are having a hard day. Post-it’s and mini whiteboards can help you remember things. I would recommend writing down anything as soon as you think of it, as you can forget pretty quickly and not recall it again. Have a diary or calendar and add entries immediately. Use alarms or reminders on your phone. I also have 2 small notebooks. 1 for any side effects I felt everyday. And the other one is the most important. You will need to take your temperature every day and may also take medications, so I write them down immediately after I have taken them, so I know what I have taken and what times, so there is no chance of taking too much medication. And I know my temperature for that day. There may be times where a doctor or nurse will ask something and I have my notebook to refer too. Otherwise I would have no idea.    If you don’t have anyone to help you, consider signing up for apps that can. Like shopping for groceries and having a transportation app. I would also look at your finances and make sure you have available funds to use. (Like pay off your credit card before you begin treatment,so if you need to use it, it will be available for use.) Try to get things delivered if you can. Exposing yourself to lots of people can increase infection risks.   When you start chemotherapy and the nurses or staff offer to refer you to services, if they are free or you can afford them, take them up on the offer too. Don’t wait until you are sick to then be referred to a service. The wait times can be long when you are unwell. Especially a dietitian. 5 days for example, can be extremely long if you are unable to eat or drink well.   If there are legitimate organisations related to your cancer, try to connect with them too. They can tell you of services they can provide to you or refer you too. At the least, they maybe able to provide emotional support during your chemotherapy. There are some great nurses out there. Chemotherapy can sometimes make it hard to regulate your body temperature. Knowing how to cool yourself down or warm yourself up can be helpful now. My electric handheld fans, I have 4 right now. So I never go anywhere without one.   And if you are looking at any type of hair loss, I have found bamboo seamfree caps to be the most comfortable and soft and breathable.   But please don’t panic that you have to have all things figured out before you begin. You will figure things out as you need it or can ask others to help you find a solution.   My absolute must haves are a walking stick when I felt physically weak, travel sized hand held fans to help with cooling me down and travel sickness I felt, travel vomit bags, a box of tissues, my lists and post-it’s and notebooks, my smart watch and lip balm. My absolute no-no’s are anything with a fragrance, humidity and really loud noises.   If I could do anything differently, I would have got more exercise. Even if it meant just up and down my street. But the hot weather has stopped me from even being able to achieve that everyday. And my stamina is deeply reduced.   Depending on what chemotherapy you are getting and at what frequency, your experience maybe very different to alot of people, including myself. You really just need to take it a day at a time.   You are also not alone here.  I hope this helped somewhat.   Milo01     ... View more