Looks like you're all surviving and doing well which is great news. How time has passed!
I've been pretty good too. Taste buds pretty good now. Still no appetite but eating a soft dinner each night. It's taken up to now to reshape my mouth and old dentures to be able to wear them. Loose and difficult to talk with. Still can't eat with the bottom ones in as it hits a peculiar nerve in my mouth which is painful. Feel very weak and don't have any energy. I know this will improve when I can eat properly again.
I think I los a bit of courage to face the world and became more reclusive. In late February I started a weaving class in Carlton. I'd booked in for the absolutely wrong class and had to lug around an enormous apparently portable loom almost killing myself to get it back to the car which was parked streets away. It was though the first time I felt like life was returning to normal. I was very happy with the fact that I had done it. Class went on for a few weeks. Next Sunday was supposed to be the last class but they cancelled i because of Covid-19 which is good but I am stuck with this monstrous loom that takes days to thread up but determined to finish the last project!
I was extremely anxious about flying to Brisbane on my own but managed to do it. Stayed with my youngest sister in a beautiful apartment on the 45th floor. It was amazing and just being with her and talking to her gave me back some of the courage I think I had lost on this journey. I did cut the trip short as I was worried airports would be closed and I'm glad I came home when I did.
On Monday I had a dental appointment at the Alfred. Pretty scary with the virus about. The dentist scrubbed up like a surgeon. Dried his hands. Sanitised his hands and dried them again. He then put on rubber gloves and had a mask on. I was very impressed and it did make me feel a bit more confident. Good news is that we're ready to start making new plates at the end of April.
The next day I had an appointment with my surgeon for check up. Received a text message saying all appointments cancelled and no follow ups are planned. All good but I was taking my terminal illness insurance papers to him o get signed. I've written to him and enclosed the papers and will just have to see what happens. Nothing I can do about it right now.
We're all prepared with about a month's worth of frozen dinners we made early on. We had two boxes of toilet paper left from our business which was a good coincidence as I have not found any, anywhere when looking for my daughter. I've 36 kilos of dried potato and salmon dog food so my dogs will be well looked after. They have loved me being home and I have loved having their company. I don't have children and grand children calling in daily anymore but that's the safest thing to do right now. I do miss them though.
All in all, I think I'm in a better place right now health wise. I hope you all continue on your journey and remain well and safe. We are living through something that we've never experienced before. I hope we all come through this with more talents, more languages we can speak, more meals that we know how to cook, more music that we enjoy and with our health intact.
Sending you all lots of hugs and good wishes - electronically as that's the best we can do right now. Good luck.
Hi Claire, I have Endometrial Cancer which was diagnosed 3 weeks ago. I have had a complete hysterectomy since then and I start Chemo in 6 days. I haven’t seen the Radiation Oncologist yet so I have no clue what is happening with that. I am feeling overwhelmed, angry, sad, scared, hopeful and terrified. I Just got the courage to call the Queensland Cancer Fund today who told me about this forum. I also have bipolar which complicates things. I wish you all the best with your treatment.
I'm also a fellow endometrial cancer member (its a club we are reluctant members of!) I had my surgery, then chemo. I was meant to follow this with radiation treatment, but they pulled the pin on that and I'm in the process of entering into an immunotherapy clinical trial instead.
Your right, the whole thing about cancer is its scary and overwhelming, the world as you know it is completely flipped on its head. In a way the corona virus is giving everyone a real insight to what its like for your life to be at risk in a way that you just have no say or control over.
Your starting chemo next week and I would say that you really need to be prepared to take the best care of yourself in this time. Its funny because we are all usually the worst at doing this! For the first week after each round you will just likely feel extreme tiredness and nausea. They give you lots of drugs to help with the nausea and you can add in things like ginger that also really helps (fresh, tea form, travel calm ginger pills also awesome). I found the week after treatment the hardest and was really careful in what I ate. I love chocolate and am a big emotional eater but had to really avoid sugar in that week because it just made me feel worse.
The doctors tell you that you don't deteriorate over the course of your treatments, but I think they mean that in terms of your blood work/organ functions etc. I found the fatigue really kicks in big time once your half way through your rounds and mentally its challenging to keep pushing on. People will say "stay positive!" and dole out lots of positive statements. This can get annoying because sometimes you just feel like shit, you want to have a nice pity party cry! Its also annoying because they just don't know what it feels like and as much as they are your support crew and you love them, they aren't going to know this journey and its challenges like you do. So its ok to not pretend your feeling great if you don't (this is no reflection on whether your being positive about it all or not - your just being human).
Your hair is gonna fall out from about 2 weeks after your first treatment. No escaping it - youre gonna have to rock a bald or almost bald head. This ones horrible because you feel like you dont even look like you anymore. I felt like uncle fester from the Addams family lol. When my hair started coming out I got my daughters to buzz cut it off - we made it fun - they took me through a side rave shave to an undercut to a GI Joe buzz cut and we laughed alot. It was less traumatic than the hair just coming away in my hands. I made my own head scarves and avoided the aweful granny turban hats. One good trick is that you can buy normal scarves and cut off one third to make a small bandana scarf and use the rest for a longer scarf tied with a scrunchie/hair tie. I didnt even bother sewing the edges as they tuck under. Youtube how to tie lots of different kinds of scarves. If you are having hot flushes compliments of your surgical menopause (what a fun trip that is!) stick with cotton fabrics that breathe 🐵
Just lastly when you having chemo just really follow the advice they give you about good oral care to avoid mouth ulcers. If you have any kind of side effects from the drugs you need to tell the chemo nurse before your next treatment occurs or tell your doctors. Even the smallest rash is important. I had a few allergic reactions and had to be managed with more medications. Trust your medical team - they are fighting for you too. If you spike a temperature get your butt to hospital! You wont be wasting anyone's time - remember you have to be ultra careful with your health and take the best care of you.
I wish you all the best Emma. Look after you 🐵
@PhilPepper How is it going over there? Had any frosts yet? How’s the health?
I’m currently on a week off work, Calling it a ‘well-being week’ which is code for ‘I’m going batshit crazy, on new meds and juggling homeschool with part time remote work‘ so I’m resting the tap shoes for ugg boots, a cup of tea and several back to back doona days. Sometimes that’s the only thing that’ll fix it.
jeez this thread has become a monster! Who would have guessed that 9 months ago we’d end up here? Or here? Just here!
Hi Emma. Sorry to hear of your diagnosis. I had endometrial cancer last year. I had surgery with lymph node removal and External beam radiation treatment. Fortunately I didn’t have chemo. You are at the worst point right now - waiting! And with covid too. What was your diagnosis?
Hi @EmmaP , apologies for getting back to you so late. I’m hoping you’re coping okay? No doubt you’ve gone through the wringer already, it’s okay to feel whatever you need to, anger, sadness, fear, relief, all of it! Whilst I can’t offer any sage advice about your treatment, because everyone goes through such different stuff, I can say that this forum is pretty amazing- and the support crew and contributors are an absolute wealth of knowledge, and most importantly- have a great sense of humour too. It might not be time to laugh just now, but know that they are here to chat as we all are. Xx
keep us posted if you feel like it,
Hey @Lampwork54 ,
Checking in to see how things are going given circumstances- from your last post you were waiting for new plates, how did that go?
hows everything else?
over here it’s turned ‘crispy cold’ and I’m waiting to see what happens with the easing of restrictions. We haven’t seen anyone other than my mum in months- which is the safest way I think.
Funnily enough, and I’m sure you’ll know what I mean when I say it, but I’ve felt quite calm and overly prepared for it. Only a few short months before This all started I was housebound, Keeping away from people, making sure there were enough meals and medicines to not run out etc. Funny how it turns out.
in other news, I like a hundred thousand other people have mastered the art of sourdough bread making and my waist is expanding in direct proportion to my ability.
today I called a ‘stop work’ on the bread and switched back to green juices. Ugh. They are nowhere near as indulgent as Hot bread and butter, but I’ll take it.
hope you’re doing well! Xxx
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