Endometrial cancer

PhilPepper
Regular Contributor

Re: Endometrial cancer

You're a mum. Already a hero.

 

You have to take your pain killers. I'll explain why. You've recently had surgery. You need to move, not lie down in pain and resist movement. Take the drugs. Move more. Rest better. Feel better. Heal better. Dance better. 💃💃💃💃💃💃💃💃💃💃

 

Aren't you glad I have a soap box? You just learnt something new about me. I like to stand on it occasionally.

 

 

Lampwork54
Regular Contributor

Re: Endometrial cancer

Hi Phil, 

The same thing happened to me yesterday.  Long post too (of course) but on a different thread and the maintenance fairies ate it!

 

Glad you're getting some respite from your treatment.  I have just finished 17th treament and only have 13 more to go - so over half way.  I am doing brilliantly well.  Staff are very impressed with my skin, no fatigue, no nausea and vomiting or mouth ulceration so far.  Cleaned the house from top to bottom today in case things get worse over last few weeks.  Put on a kilo last week which is a miracle as I am only eating broth, boiled eggs and mashed avocados.  Yoghurt, jelly, icecream.  Travelling very well.  I have never appreciated weekends as much as I do now as it is a long awaited holiday from travelling in every day to the Alfred Hospital for treatment.  

 

Look forward to many more posts from you and Claire next week.  Have a wonderful weekend.  A bit of sunshine today has made me feel as if Spring will soon be here.  Can't wait!

 

 

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RJG
Frequent Contributor

Re: Endometrial cancer

Hi all,
I write my longer posts in a word processor and then copy/ paste it in here. If the forum gremlins are out and about then I can try again later.
Hugs to all,
Rick
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PhilPepper
Regular Contributor

Re: Endometrial cancer

So Rick!

 

Did you find all the Elton John songs?

 

I'm asking before I try to repost the answers.

 

Lampwork got them all. Claire missed one.

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RJG
Frequent Contributor

Re: Endometrial cancer

14
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RJG
Frequent Contributor

Re: Endometrial cancer

I see that there is at least one other thread with over 180 replies.

Still quite a way to go here - posts like this shouldn't count!
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PhilPepper
Regular Contributor

Re: Endometrial cancer

Hi Lampwork and Claire

 

Long night...

 

I've been reflecting on this thread. I took Rick's feedback to heart. If going for the record, incidental posts shouldn't count. So I went back and read Claire's initial post. I found it quite moving for two reasons. Firstly, it took me back to my days of first diagnoses and the emotional rollercoaster that followed. Secondly, Claire's attitude. So much to deal with, but positive. Signing it off with well wishes and 2 kisses for everyone. 

 

I didn't realise it when I first read the post, but the first response to the post was Rick, who is actually a friend of mine.

 

Rick has shared his cancer journey through a series of journals he emailed to his circle of friends. As a result, I felt comfortable turning to Rick, to be one of the people in my circle of friends to share my cancer news. Another friend, who I'll just refer to as Fred, also with his own cancer story, also one of the first to learn of my plight.

 

These two guys have been very supportive, extending their friendship, advice and their journeys. Rick especially, he taught me early on to laugh at the cancer. An important necessity for adopting the right attitude to beating it. So I'd like to extend a big heartfelt thank you to Rick for his guidance on my journey. He helped to kick start my journey in the right direction. 

 

Getting back to the original post,.. being a little bit ahead of Claire in her treatment, I thought I could offer some kind words to help out. However, reading through the post, there was so much advice and support coming back, I felt I could add nothing of value. I drew more from the thread than I could add. In particular, Lampwork's and Claire's responses to each other were so impacting on my perspective on my attitude to my own journey. 

 

As time has moved on, we have shared some interesting banter and taken an ongoing interest in each other's journeys. I'd like to thank you both for the inspiration and support you've given me through this journey. This one thread has been quite significant for me, so I'm reluctant to let it die so easily. It's a big read for any new comers, but I think there is a lot of good material in here and now I can see, looking back, I did have a lot to contribute after all. I hope you have both, and others, have benefited from my involvement. I think this post is a healthy and positive reflection on how we dance with our cancer... and just keep on dancing.

 

So it's about 4 in the morning. Around the same time as Claire's original post. I've been awake for nearly 2 hours. I don't sleep a full night because of my stoma. I usually get up at least twice to go to the bathroom. Lately, I'm back to failing to drift off after visiting the bathroom. Makes it really hard to get through a day's work. I was sleeping better, but I think I am feeling the stress of cycle 2 of chemo, starting Wedenseday. The 3rd week break in my cycle is so good, despite the lack of sleep. Starting the next one is scary.

 

I remember when I jumped out of perfectly good aeroplane at the ripe old age of 17. I was scared but excited. Afterwards, someone told me, the second jump was scarier because now you know what to expect. I think that is what worries me with the chemo. I now know the bullshit I have to go through.

 

And I'll say it again. Chemo sucks balls.

 

It's hard to believe I had cancer to start with. My symptoms could have been explained by so many other things. It's fortunate I found a GP who was willing to find out. She saved me from reaching stage 4. Now post surgery, I feel like I am dancing with chemotherapy, not cancer. I feel the side effects from chemo, with no mistaking them. They are real and scary. Cancer could have been a dream by comparison. I was told it was there, but I haven't really felt it. I guess that is all factored on the type of cancer and the point of progression, when diagnosed. But ultimately for me, cancer treatment is a hard journey. I am counting down the days for my final treatment and upcoming surgery. I see the end is in sight.

 

I have learnt so much from this forum and a lot from this thread.

1, cancer changes your life forever. No matter how much time you have left.

2. everybody's journey is different. No one can tell you how your journey will go, but it helps to share your journey with others.

3. Life goes on, even after we have gone. If we can't live for ourselves, live for the ones who love and need us.

4. Don't be afraid to ask for help.

5. Don't be afraid to tell people how you feel. Open up, don't bottle up. There are no right or wrong emotions on your cancer journey. Telling other's how you feel can help you and others.

6. Be happy. Be positive. Look at how much time you may have and plan to make the most of it. Don't let cancer beat your mind. Fight it; or dance with it. If cancer kills me eventually, I won't be described as losing my battle with cancer. In my mind, I have already beaten it.

7. Don't be a victim. Despite being the sick one and needing help, your loved ones are on your journey too. Be there for the people who love you and support them as well.

 

There are probably more things to add, but I can't think of them now. This is a long post. I hope the maintenance gremlins don't eat this one too.

 

Any how, Lampwork, Claire (aka Ginger Rogers); and you too Rick, thank you for helping me by sharing your stories. You've been an inspiration.

 

Now get some sleep people!

 

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Lehiatus
Contributor

Re: Endometrial cancer

Hey Phil, I'm with you, we can't let this thread die, there is far too much beneficial information here for others....even at 4am in the morning. Damn this disease.

 

I sleep with the lights on now- and haven't done that since I was 5. I'm going to get a bit waa-waa for a minute but the darkness feels a little oppressive now, and I just want there to be light when I open my eyes. It's something I'm working through (with the help of a shrink and friends who have NO problems laughing at me!)

 

Thank you for calling out the things that really matter on this journey, the first thing, being to be able to talk openly about it, and having the right support networks in place. This thread, you and Lampwork, Rick, Sch, Budgie have been instrumental in my ability to cope. Just having someone else in the universe with any semblance of understanding has been so valuable. If I haven't thanked you all, I thank you now.

 

As I'm a newbie on the cancer path, I'm still not sure what is to come, but I know that everything is irrevocably changed. Somethings for better, some for worse.

 

I wish I could understand how you're feeling with the chemo, but I'd be lying if I said I could. I haven't gone through that- though can at least empathise with the feeling of understanding more pain is just part of the process, and you have to go back in regardless.  It takes immense guts to brush off and go back in when you're already feeling like shite, without folding or breaking, or breaking and still knowing you just have to do it. But this is our journey right? Cancer sucks ass, balls and any other extremities, there is no way around it. I'm hoping that the next chemo doesn't suck so hard, and surgery does what it needs to. I'm keeping you in my thoughts.

 

You know, I've been told by well-wishers that I should feel blessed and that it's only those who are strong enough to bear it, etc etc. Sometimes I visualise karate-kicking them in the head, most of the times I just think I'll give them a hug. It's a shared journey of fumbling words and exploding emotions- waking up each morning with mortality staring straight back at you. The thing is, whether we had cancer or not, it's all so fragile. We just get a gentle or not so gentle reminder.

 

I haven't reached out recently because I'm staring down the barrel of nothing. I'm waiting either for treatment or transition to a survivor, and both are a bit scary. I'm more scared of being a survivor to be honest as it's a massive expanse of not knowing what to do next. My work, my relationships, what I want out of life have shifted so monumentally that going back to before seems impossible. I know it's too big for me to work out alone so I'm seeking out help. Treatment will have a schedule at least, a start and an end. That's my brain right now and I'm not proud of it, but its where it's at.

 

My learnings so far are limited, but i'll take your cue to share some things that became apparent to me really early on:

 

1. Cheese fixes pretty much everything. The gooey type is best. Find your cheese, or cheese substitute and enjoy it.

 

2. Jokes, laughter, absurdity, banter, all of those things with people who get you is the best drug of all. WAAAY better than any class A opioids.

 

3. I've lost what little dignity I had very early on, my body with all of its scars and bruises, pinholes and tufts, wrinkles, is just ridiculous. There are days I remember what it used to look like, but then I also remember how little clue I had at the same time, so I'm going to take experience and wisdom over tight abs and tone. 

 

4. Friends and family will say the most stupid stuff you've ever heard. If it can be said, and it's going to hurt or rile you, they will seek it out and say it loud. But they are just trying to love, help, and process what's going on in the same way as you are. Be kind. Forgive them. Or keep a blacklist (whichever floats your boat).

 

5. If you're going to cry, make it count. Body rattling, lung shaking sobs are the best. Raw eyes, snotty, sniveling, ugly cries. I jest, but I'm also deadly serious. BAD pun. Crying is cathartic, and it's okay to just feel like shit. 

 

6. Hold people, hug people, grab hands, just do what you can to stay close to others. It's easy to hide away, and pull back from contact, but it really can help.  

 

7. Like Phil said, Talk. Just open your mouth, or begin typing. However you choose to do it, if not for yourself then for others. Sometimes what you say can change someone else's day. You just don't know.

 

I hope you get a better nights sleep Phil than last. I'll be awake at about 2am and then again at 5.30 if not....

 

Would love to hear from Sch, Rick, Budgie and Lampworks about their learnings too. 

Cheers,

Claire 

 

 

 

 

 

Vonchies
Occasional Contributor

Re: Endometrial cancer

Hi Claire,

 

I’m sorry to hear about your diagnosis. It’s a always a huge shock and you think why is this happening? how are you going now? Are you undergoing treatment?

 

I was diagnosed with endometrial cancer stage 3 in June last year at 36 years old. The only symptom I had was one irregular period and I was immediately at my GP. It took a similar time like you to get a diagnosis - 6 months for me. Leading up to that one irregular period, I was regular and didn’t have any symptoms, past pains (hardly got period pains), endometriosis etc. My GP said it was normal but I was suspect as it wasn't ‘normal’ for me. It took three visits until I got a internal scan which came up with a polyp so I had to book in a D&C. What prolonged the diagnosis was my doctor didn’t take my medical issues seriously and referred me to hospitals outside the catchment area. I was on waiting lists for two major hospitals, but were removed from their lists which they sent a notice via mail. It took over a month to wait to get those letters and I had to start again to get another referral. I went to a private hospital which was still a month wait to get an appointment for consultation. I waited another two weeks to get a D&C and during that time I believe my cancer developed. 

 

I went through IvF, and a full hysterectomy in a month after and started a immunotherapy trial after 6 weeks of recovering. 

 

Anxiety is sosmthing you definitely feel. However I felt my first 6 months was just about rolling with the punches, and dealing with what was next in terms of action plans and medical appointments. I found anxiety hit me closer just  shy of a year since diagnosis. I guess you have time to process everything then. I try to manage it by seeing a psychologist and exercising. I love walks too. I share my concerns with those close to me but I found handpicking a few is well worth it as some friends and family don’t completely understand or as supportive   and even though their intentions are good, they just don’t get it. I talk to those that I don’t feel guilty about sharing and am not filtered.

 

hope you’re doing well and please feel free to reach out if you need.

 

all the best! X

 

Vonchies
Occasional Contributor

Re: Endometrial cancer

I haven’t read the full thread (sorry as I’m on a small arse phone) but CHEESE. Definitely one the the top 5 all time best inventions ever. ALL hail Cheese.

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