Hey Caroline, it must be the way this thing goes, another 2am wake up for me also, pain started it then it rapidly descended into mental gymnastics. Tell you what, my body might be cactus but my brain is on fire!
Re surgeon-I’ve never understood the way this stuff gets communicated, or the wait times. It’s like it’s designed to torture. I’m hoping in between the waiting you’re getting rest and are surrounded by those you love. My days have become couch, Netflix, a tiny bit of bad dancing to keep my energy up and trying to cook good food, though I’m losing that ability cause of tiredness. Today I’m off to the specialist and ECG in prep for surgery. Keep me posted if you want to, I’m here xx
So appreciate you taking time to share your story with me. I’ve pondered the transition from surgery and being ‘cancer free’ to knowing it’s just there, out of eyesight but lurking. It scares me- I think that’s the hardest thing, knowing this is the new normal is something so strange to get my head around, I haven’t yet.
It’s going to sound hippyish, maybe full blown ‘peace love and mungbeans’ but I also feel that we’ve been given a great gift. We get to choose how we react to mortality, to pain, to fear- we see it up close and get to decide what we want our story to be from that point onwards.
It doesn’t take away from the pain, the uncertainty, the grief of ‘what could have been’ but instead, gives us right now. That’s confronting as all hell, but it’s real. Airs and graces have gone, we’re all just people trying to get through each day, but I’ve notuced one other thing- it brings out such immense compassion and kindness in others. I’m overwhelmed by it.
For me, I’m seeing this as a dance rather than a fight. I don’t want to be at war with myself, cause honestly I reckon I’ve done that for too long. The dance allows the disease and I to share the song and the steps. There are gonna be days when I hate the song, and I’m stumbling over myself, but days like today- my head is back staring at the sun, the beat is real and I’m feeling it all and I’m happy. Am I nuts? I bloody well hope so! Everyone has their own way to process this I suppose, and what I love is that there is this amazing space in the world (this forum) where we can. It gives me hope.
Im hoping your chemo isn’t too rough and that you get to rest and find strength for the next bit, and please keep sharing what you can, I’m so open to learning and sharing with you,
I like your idea of dancing, rather than fighting. Maybe it's a combo that's needed. A little Muhummad Ali. Float like a butterfly and sting like a bee. And being nuts is not so bad. No one could blame you.
I think the flurry of medical appointment and chemo preparation has brought me back to this site. I've posted so much recently. I can't stop sharing . May I just need to shut up a little. But I'm glad I said something that helped you. I'm glad I'm getting something out of this site, but so much better if it helps others too.
Keep up the good dance. Smile if you need to smile. Cry if you need to cry. Scream if you need to scream. Post on the forum if you need to post.
You sound better. Having your own veggie garden is fabulous. I can't wait for Spring! It's my favourite time of the year. My recovery is going well. Tough day yesterday for no particular reason. Just a bit tired of sitting around and healing. Today I'm going to try doing more normal things. Radiotherapy starts tomorrow for me so I want to get the house back in order today to be ready for whatever comes next. My mouth and neck are healing well and my nerve pain is finally under control. Today is exactly three weeks since surgery. I have come a long way since then and things are going well. My mouth will now always look as if I've had a left sided stroke and I speak differently because of the way my lower gum had to be stitched. I won't be able to hide my surgery apart from wearing a scarf for the scar running down it. That worries me. Going out and about in the world with my mouth the way it is. It may look a bit better when I eventually get a lower denture. I have to remind myself - it could have been much worse. My body feels strong though and ready for almost anything and that's a good place to be right now. Good luck with everything that's happening to you and please stay in touch. It's a great place to talk about things that no one else really wants to talk about.
hiw are you faring today? I’m not sure if I responded to your last post, it’s been a flurry if appointments and I seem to be losing track of days. I just want you to know that I’m so moved by your words and honesty, sharing the fear about your mouth and neck. I’m sure you’ve had people offer unhelpful platitudes or just avoid talking about it altogether- it’s the stuff we shy away from...I can’t know how you feel so I won’t do that, but I will acknowledge that the change is real, it’s going to be difficult, and I think their will be loads of emotions to work through. It’s like the cancer gets a second bite - people who aren’t in it just don’t understand. I can’t do anything but offer an ear and say let it all out, say what you need to say here- there’s no advice or judgement, just a bunch of other people muddling through together. I’m so glad we have each other xx take care and reach out if you need.
Hey Phil, How are you today? I hope faring ok?
Today has been a dance and a tustle. I saw my GP for preliminary CT results and it looks like there’s a legion on my spine, and lymph node changes. Add to that another CT scan, A PET scan, and my hyperthyroidism and thyroid gland requires surgery too. It’s a lot, and I still don’t have my formal staging so I’m feeling really really overwhelmed.
Today my 5 yr old son crawled up for a hug and for some reason the smell of hair triggered this whole thought process about not being around to see him grow up. It’s a possibility I’ve toyed with but today it came crashing in, like the full weight of it is here. I’m not scared, I’m sad, and worried for my husband and son. I’m also trying to be logical, and not get swept up in fear or uncertainty but it’s hard. There is nothing to do but accept it as a possibility and focus on what is also possible. Crying feels good though, just for a bit. Tomorrow will be different, it always is right?
Thank you for your lovely, kind words to my post. I'm responding to this post because I just wanted tp give you some encouragement. You're in a really dark place right now because there is so much unknown. About 40 or more years ago I read a book about cancer and T-cells. I will have to check if I still have it. It was about a study done to two different groups of cancer patients. One group were given dire outcomes for their particular type of cancer and the other group were given support, encouragment and positive advice about their outcomes. I've never forgotten this book. Both groups had their T-cells measured each week. Negative group did poorly. Positive group did really well. The point is that positivity, laughter (I KNOW - biit hard to laugh right now) and doing everything you can to fight is really important.
Plan to succeed. I did but I still went over my own funeral plans with my husband before surgery, just in case and we had a few dark humoured laughs about it. I told him I could set him a dating profile if he liked and I would highly recommend him as a partner. I was able to come to terms with the surgery and the hospital by letting go of my anxiety and believing that when I went in to hospital, there were people there who would be intent on giving me all the help I needed and give me the best possible outcome I could hope for. Which they did. It was the same with Radiotherapy. Have just completed first 2 days of 30 in total. Very anxious as my mouth and neck were not fully healed. I imagined a blue ray of light hitting the target areas and killing the cancer whilst sending me healing rays to keep my body strong. It's the same when I have chicken broth. I imagine all the powerful minerals in it, healing my body and nourishing it.
You can do this and it will be a fight for your life so give it everything you've got. Research, plan, develop your action plan. Things you can do before or after treatment which will help you feel good. Whatever it takes because you just have to come through this. Schedule your appointments on a big calendar. Right now all the doctor visits and tests are overwhelming but the more organised you are the less overwhelmed you'll feel. It's ok to cry today. Tomorrow will be a better day because you'll be determined to make it so for your husband and son. Also for yourself. One day at a time and one foot in front of the other. That's all any of us can do right now. Wish you every success for whatever lays ahead and will be thinking of you, so some updates would be great. x
Goddamnit woman you just made me cry again, but those warm tears of someone giving you a good hug and a bit of kick up the butt too. I’ve had the funeral/partner convo with my husband too, I made him promise he’d spend at least a month grieving and another learning how to dance because his sense of rhythm is atrocious. One foot in front of the other today, tomorrow I’ll come up for air and start again- I knew this would come, and no doubt will again, it’s good to be able to say it all out loud. Thank you so much for your kindness. Wishing you all of the good stuff back, I’ll keep you posted, and please promise to do the same xx
Well today was your crying day so I'm happy I made you cry!!! Sometimes good tears are needed too.
Yes, will keep you updated and please do the same. We're on a journey that we never volunteered for or bought a ticket to. What we do from now on, is really important.
I'm doing okay. Occasionally the chemo anxiety breaks through but I'm able to suppress it mostly. I've taken a trip to the coast. There is a rally on at Narooma but I cannot compete, so it's been a good chance to catch up with a few friends and sneak in some fishing. This is my last opportunity for fishing until chemo is over, so I'm making the most of it.
I can remember having my mortality crisis soon after diagnosis. When you are told you have cancer late on a Friday afternoon, you have a whole weekend to fall to pieces... and I did. I guess it's a necessary part of the process. Helps you to understand what you are fighting for. I think you nailed it on the head earlier, having some control over your mortality. It would be easy to do nothing and let go. At some point, it will be inevitable. I'm certainly not going to lay down easily. I don't think you're close either.
I've come up with a weird little analogy. Cancer is like Lego on the floor. Pick up the pieces you can find and put them away. Keep looking, if you think you got them all, you are probably wrong. Keep looking and if you find more, pick them up and put them away. However long I live, I'll keep looking for cancer. I think all I am doing now is controlling the cancer they've found so far. I'm not so naive to think I'll be cured. With any luck, the city bus will get me when I least expect it.
Hang in there Claire. The kids need more cuddles.
Be part of this supportive community