Endometrial cancer

[Lehiatus]

Hi Phil,

how are you feeling today? Hopefully the nausea has abated. Have you tried ginger like Lampwork suggested? I used it for nausea after surgery and during pregnancy, not sure about chemo but could be worth a shot. 

You mentioned a mental blocker, can I pry and ask what you mean?

Im home, warm, really sore from the surgery but finally able to rest without being checked by nurses every 30 minutes to an hour, so that’s something. Oh and the food here isn’t trying to kill me so that’s something too. 

Thinking of you and your good wife today and hoping you’re hanging in there- doing a slow dance, leaning on each other and knowing we’re here for you if you need to chat. Please let us know how you are going. 

cheers Claire 

[PhilPepper]

Hi Claire 

Thank you. T'was a very slow dance over the weekend, and I was in good hands.

Mornings are better for me. I have more energy, but a lack if motivation. I thinking I'm lacking the ability to organise and execute tasks. It is too easy to procrastinate. Then when it comes to drinking or taking medication, my mind says no and my body responds in kind. It's hard to take tablets when you want to gag at the thought of it.

Good to hear you are home. You should rest much easier. Are Clexane injections your new poison? My wife was doing mine until she went away for a weekend. Then I had to do two myself. It was not easy, but I struggled less with injecting myself than I am with taking tablets.

I knew the hospital food would give you grief. Have some more junk food.

🍿🥙🌯🌮🍟🍔🌭🍤🥡🍦🍨

Take care

Phil

[Lehiatus]

Hey Phil,

Totally understand the lack of motivation, I feel like I’m forgetting very basic stuff, and I’m usually the master Organiser, triple juggler of the household. I’m trying to remember simple things like responding to texts, what medications I’ve taken etc. My bro who is also final yr Med student said that the meds impact, but more obviously is stress and lack of sleep- and to try to keep your list small. Mine is 3 things now. Get out of bed. Eat. Respond to messages. Everything else is gravy. So I’m passing that sage advice on. Not sure if it’s helpful or not. You can tell me to blow it out my ass. 

With the tablets- I have an idea that we used for my son cause he hates tablets too.

do you eat protein balls or truffles? They can be made with pretty much anything in them. I wonder if you either buy or get a batch made and then push those tablets into them, take a massive swig of something to push them down- OR- is there a liquid version of the meds? 

Claxane injections are evil. I just don’t understand how anyone in their right mind could think ooh good idea!  ‘oh this person is being sent home post operatively rattling with meds, in pain so let’s add self administering injections to the mix’ it’s crazy. I’ve done two- I loathe it, but the alternative of not doing it is grimmer so it’s gotta be done. 

Omg food- I cant eat either and I love everything to do with food, cooking, growing etc. I reckon I’m eating about 1/4 of my usual intake. It’s worrying but I’m not sure what to do... also, I could lose a few pounds so maybe it’s okay- I just don’t know. 

I hope today is a is a bit better than yesterday and you’re getting some good moments in between the crappy aspects. Let me know, 

cheers Claire 

[Lehiatus]

Hi Lampwork,

im reaching out to see how you’re going- it’s been quiet and I’m worried about you. I’m hoping you’re resting up in between treatments and doing as okay as you can. 

I’m at home, going slightly stir crazy. Sleep is a memory, eating normally seems to be a thing of the past too. Welcome the new normal- and yet, so damned grateful to just be here. Please let me know, 

cheers

Claire 

[Lehiatus]

Hi Budgie, I realised I haven’t reached out and said hi! How rude! The banter here is a great surprise to me too, I wasn’t sure what I’d find when I signed up but it’s been endless relief to find people battling similar issues and just knowing I’m not going mad. Tell me a bit about yourself-  where did your nickname come from? 

Cheers 

Claire 

[Lampwork54]

Hi Claire,

I'm doing very well.  Sounds like you're recovering but why is seep a memory?  Good sleep is really important so just wondering.

I did go through a few dark days where I felt everything was futile but am feeling much more positive today. Am 1/3 of the way through Radiotherapy.  10 down and 20 to go.  Everyone is very happy with me today. Weight is holding.  Nutrition is good.  No fatigue, blisters or ulcers in mouth.  Plastics have discharged me from further review as they're very happy with surgical outcome and healing of the mouth.  I think all the soups, smoothies and juices have made me incredibly strong and I could not nap during the day if you paid me.  No nausea or vomiting either.  I know it can still get worse but at least, so far, so good.  

Had a brilliant idea yesterday to make poached rockling and scalloped potatoes, thinking it might be something I could eat.  The rockling was terrible and I could not swallow it.  Felt like rubber in my mouth.  Think I will try bream next.  The potatoes were beautiful and easy to eat but had the most terrible heartburn from it throughout last night which kept me awake and it was just awful.  Will not be repeating that.  My husband and dogs loved the rockling.

Today I've been thinking of the poor woman killed by a falling tree this week in Melbourne.  Terrible tragedy.  Brought home to me that despite our diagnoses, we at least had hope.  We had time to prepare ourselves and to fight to survive.  The woman who died had no inkling that her life would end on that day.   It was nothing she did or didn't do, it was just her time in that moment of time.  I've learned that it's futile to worry and where there is life, there is always hope.  

I think I've been quiet because I haven't had much to say.  I'm a bit embarassed with friends and family because there is nothing new to report, I've done nothing and been nowhere.  All except for going to treatment every day which takes up most of the day.   It's pretty boring but how lucky am I to have the chance to do that?  I did make some beads yesterday which was a big break through and am quite happy about it but not rushing to makes any more right now.   Am enjoying couch time with my sleepy and exhausted dogs as well as some hand embroidery for now which is more than enough.  Constantly eating, drinking, rinsing mouth, as it feels hot and burning so always looking for cooling things to put in it.  

Hopefully, Phil is doing well too.  I really hope so.  I'm really happy Claire that you are still here too!  Cabin fever is a thing!  I now look forward to weekends because it means no treatment on those days. I am not even getting out of my pj's now on weekends as I'm so happy to not have to rush off somewhwre through peak hour traffic.  Blissful.  I'm rally looking forward to Spring. 

You need to look at your time at home, as crazy as it may make you, as a respite before you have to start treatment.  Use the time to get your body as strong as possible.  I don't think anything will feel normal again for a while.  I can't imagine eating out with friends or family.  I have to eat with a big tea towel because I'm now quite a messy eater and because left side of mouth and lips totally numb, I can't feel if I have food there or not.  Have a special signal organised with my husband for those moments.    

Our new normal might still be good because we're here and we're with our loved ones and that's pretty good for now.  I'm sure it will just keep getting better and better over time.  Good luck with a full recovery and take care of yourself Claire.  

[PhilPepper]

Hi Claire 

Blowing things out your arse? There is at least a dozen good poo jokes I could launch into, but I'm sure the rest of the forum doesn't want to read them. Nothing original though, you could probably beat me to all the punchlines.

I have a different view on my three items. Morning Capecitabine without vomiting,  get through the day day without dehydrating and then, evening Capecitabine... without vomiting. Everything else suffers. Not ideal. It means my that even my stoma care is taking a back seat.  However, there are two good things out of that. Firstly, I'm really focussed on getting the most out of the chemo and surviving it. Secondly, my stoma care has been well under control, the best it's been since Pepper first appeared six weeks ago.

With the tablets, I don't have a problem taking them. I have a problem filling myself with drugs. I have a mental aversion to drugs in general and I feel weak if my need to rely on drugs. One step closer to the grave if I need drugs to survive. Well! Look at how many drugs I have to take per day. How many steps closer am I? To make it worse, the gag reflex is on high alert. I have to mentally prepare before taking my Capecitabine to make sure I don't bring it up. How nice it would be to be drug free? Now I sound like a junky. 

Mind you... Clexane. At least I didn't have to swallow. My first, done by me, took about 40 minutes of pacing and procrastination. How did you go the first time? Did you try it at the hospital as a practice ?

I've done well with putting my weight back on after surgery. However, it's on it's way down at the moment. I have to watch closely. Worried about getting too thin.

With you however, you might find a slinky new ball gown to dance in. 💃

Thanks for checking in on me. I've been off the site a bit because I've been feeling shitty, but it's temporary. Still focussed on going for the record .

Keep on dancing

Phil

[Budgie]

---

Hi Claire,

Not rude at all 😊.   I know how small comments can get lost in a thread very easily.    My nickname isn't very exciting, just a play on my maiden name, which I'd rather not say 😉.

I was diagnosed with stage 4 kidney cancer back in Aug 2012, on oral chemo (6 different drugs so far - the current one being the last available treatment for me) ever since.  Just plodding along, taking each day as it comes.  

I hope you are feeling well after your surgery.

Budgie 

@Lehiatus wrote:

Hi Budgie, I realised I haven’t reached out and said hi! How rude! The banter here is a great surprise to me too, I wasn’t sure what I’d find when I signed up but it’s been endless relief to find people battling similar issues and just knowing I’m not going mad. Tell me a bit about yourself-  where did your nickname come from? 

Cheers 

Claire 

---

[Lehiatus]

Hi Lampwork,

great to hear from you. Also good to hear treatment is going as well as it can. I think there’s heaps to nutrition that hasn’t been thoroughly explored yet in the science world, but good healthy food seems to be helping, those smoothies and soups at least! Strange about the fish, is that a side effect of the treatment do you think? How have you gone with other proteins? 

Re that tree falling across the lady in Melbourne, it’s unfair, and happens every day. I think of her family going about life and then everything changes. We’ve at least been given warning, choices, information about what or how, and weirdly enough it’s comforting even though it’s also really scary. There’s a lot to be grateful for. 

I love that that you’ve made some beads- but get what you mean about not doing much. My time is spent reading books, magazines, watching TV, staring out of my window across the farm, thinking about what we need to plant for the veggie garden, or just musing on what I’d cook if I could get up and do it. I have loving friends and family who call everyday for updates and in some instances I’m just letting it go to voicemail and following up later with ‘no news is good news’. 

I love that you and your husband have worked out signals for eating. I clearly don’t have the same challenges, so it’s by no way a comparison, but I know that this whole thing has made me rely on my husband/family much more, and we’re closer because of it. I’m really headstrong and fiercely independent, never asking for help most likely to my own detriment, (a family trait) it’s been a steep learning curve, but actually good to learn I need to. 

With the sleep thing, I’m honestly not sure what’s going on. I’ve never been a good sleeper (also a family trait)- surviving on about 5-6 hours a night. I can fall asleep easy enough but not stay asleep and then I’m awake at 2 am or 4am in the morning. 

Im trying not to get too stressed about it and make it up with naps, but like you, I’m not napping either. My food intake is really low- appears my guts can’t process anymore food than the size of grapefruit before debilitating pain, so I’m on smoothies and soups. Not sure if that’s my new normal, but either way I suppose it will be fine. I’m seeing my GP on Monday to check.

Now onto some good news, my surgeon says they they think they’ve got all the cancer with clear margins- so just waiting on head of radiotherapy to decide on whether I need treatment or not. I’m cautiously optimistic.

so good to hear from you Lampwork, even if it’s ‘no news’- it’s just good to know you’re ok xxx 

cheers

claire 

[Lehiatus]

Hi Phil,

Good to hear from you even if you’re feeling crap... I think we’re totally going to hit a new Cancer council record at this rate!

The chemo stuff sounds... bloody awful... and there’s nothing I can say cause I’m not going through it so it’ll just sound trite- so I won’t. It does sound like you’ve got your head in a good place about it though, considering. How many treatments do you have? 

Get your feelings about the drugs. I’m not sure how many pills I’m on per day but I know I rattle, I hate it, and when I try to reduce what I’m taking I keep getting gazumped more by the docs who will offer something else, but then there’s another pill for side effects. It’s a vicious cycle. It’s weird how I never really focused on being grateful for my health before this- I just woke up, grabbed a coffee and a banana, made my way into work or dropped off our son- and went about my day. Now each day is punctuated with pills. Thankfully it is temporary as you say. 

Clexane- yes I had to do it at the hospital and being such a scaredy cat I stabbed my self and then shrieked, had this needle hanging out my guts and the nurse had to finish it. 

Ive become more adept. I’m now on injection number 5 and it’s amazing how quickly things change.

i told Lampwork so I’ll tell you some kinda good news, my surgeon called with results and they think they got all the cancer with clear margins so now I’m just waiting on whether I need radiotherapy, but that’s pretty good news in my book. I’m still wanting to get a full PET scan cause my mind won’t rest without it, but it’s hope. 

Anyway Phil, hope you’re doing a bit of side shuffle or stomp, I’m in a tap kinda mood for today.

stay in touch- Claire