Friday, 14 March 2014

The cracks are showing ... in my boat.

Today, I was 4hrs & 15 mins early for my Oncology appointment at 11am.
Sure I wrote it in my diary ; sure I didn't check.
I know I am an idiot.

Luckily the Practice Manager saw me sitting there while patients were coming and going - so she checked. Then she came to tell me why I'd been sitting there , almost an hour. Thankfully, the Oncologist could see me then and I didn't have to wait till 3.15pm.
Hot salty fries.

I've lost my executive functioning , I know it is related to chemo brain, stress,lack of sleep and anxiety.
I can't remember lots of things. Important things.
It's refreshing to hear other cancer patient's stories about chemo brain; confirms ones own insanity.
I must use my diary.
I must use my diary.
I must use my diary.


When faced with a major illness or stressful life change, you don't have to go it alone. A support group can help. My Facebook Breast cancer support has helped me immensely.




Be it cancer , illness, or major life changes support groups bring together people facing similar issues. I have been a member - unfortunately- of several online support and real life groups.

I am so thankful (well I wouldn't wish it on anyone) I have found a few survivors and people undergoing treatment with MPNST (mostly in USA) ; to share experiences and advice.They are a friend of another lady in a NF support group, plus she has other friends dealing with MPNST too. Very valuable resources in case I need it later. Meg had her second MPNST removed a week after me in February.

It can be helpful just talking with other people who are in the same sinking, stinking boat , up shit creek without a paddle. Seriously, I found this in case you need your own special paddle.
Don't Get Caught Without One!

I have to keep laughing.

Unlike my pretty pink paddle - it was my anniversary, going into hospital present. Paddling is my therapy !




Already , we have being able to offer one another emotional comfort and moral support. Due to the rarity of MPNST they may also offer me - practical advice and tips to help me cope and give me confidence asking questions about my treatment etc.

My husband and I have a lot of other stuff to deal with right now, we feel very isolated and the past month has been a big struggle emotionally and physically. My mother lives over 300kms away and it was a God send she came to mind the boys here for a week. My family help as much as they can.


One lady from church offered to send us meals when I got home from hospital.Sam (7) has severe food issues - he only eats a limited number of things (chocolate no worries at all) and I'm a bit particular about what I eat, because of cancer I want a diet AS HEALTHY as possible. I am not complaining I need that control.

We are generally OK, my husband works mostly on our farm and together we get through. If he had to work outside the farm , it would be a different story. He is my rock and shares the housework and caring for our sons. Especially, he gives me the time out to paddle. I am so grateful.


My Tuesday appointment with the Radiation Oncologist is at 11am, just to ask questions. I asked them to double check the time.

Paddles up and dig !

Ps : If you notice any grammatical errors please tell me , I honestly can't think straight.

Comments (43)

Loading... Logging you in...
  • Logged in as
If you'd accept this offer I'd be happy to help. Would you like me to take on your appointments and reminders for you as a PA type. You know I like to help & I'm an organiser by trade.. Let me know. I'd happily take this on. It would be my pleasure. One less burden for you. Promise. D xx
1 reply · active 567 weeks ago
Paddles up and dig indeed, just make sure you rest when you can. Thinking of you Trish xo
1 reply · active 567 weeks ago
Lydia C. Lee's avatar

Lydia C. Lee · 567 weeks ago

You're doing fantastic. Remind yourself of that often. And good luck.
1 reply · active 567 weeks ago
You are human. Even those of us w/o chemo brain have trouble keeping track of appts or whatever. I remember how very helpful my church and my friends and even some total strangers were when we were dealing with Brennie being sick and in and out of the hospital. I also get the not always liking the food folks brought us. You're doing a great job!!!!!
My recent post Too Much Time
1 reply · active 567 weeks ago
Great to know that you have such a strong support system.. it truly gets us through the toughest of times. I think you're doing wonderful so don't give up!
My recent post ♥ Want to be a Pen Pal & Send Us Happy Mail? ♥
Glad you have found some other people that can help connect some of those dots and help with the many questions. Enjoy your time out when you get it and rest up when you can xx
My recent post Back Up Day – Back to School Photos
No matter what is going on, good support is EVERYTHING. I'm so glad you have your network around you. I forget things all the time and I suspect it may be sleep related but i'm not sure I really have an excuse!
My recent post Never Mind the Age Gap
Thank goodness for the love and support of your husband and mum, Trish. Good that you can get away for some paddling honey. Sending you lots of positive xxx
My recent post Could You Validate Me, Please?
1 reply · active 567 weeks ago
I am so glad that you have found a great support network and that you love your paddling :)
If someone picks up a typo or grammatical error in your posts I would whack them with a paddle made of cement.

I hope you breathe in and out and say yes to all offers of help that come your way, be it a cake or a casserole or doing your Ironing Trish. xx
My recent post THANK YOU! No thank you.
1 reply · active 567 weeks ago
So pleased to hear that you have support groups that you can call on Trish. What a wonderful husband giving you time out that you so deserve. I know I live in Melbourne but if there is anything I can do to help, anything at all, please shout out. Big hugs xxx
My recent post See It, Try It, Live It – It’s Going To Be Big + Giveaway!
1 reply · active 567 weeks ago
You are one very brave lady Trish! I'll be keeping your family in my prayers.
My recent post Surprise myself
1 reply · active 567 weeks ago
DeepFriedFruit's avatar

DeepFriedFruit · 567 weeks ago

Keep writing Trish, The way you handle your challenges (for want of a better word) is very motivating. That may not be what you want to hear ... but you're a champion and your ability to shine through the difficulties is inspirational. I wish you love and hugs .... strength and support .... good results .... and a magical diary.
L
My recent post Day 1621 - Memories
1 reply · active 567 weeks ago
I'm not surprised you're forgetting a few things, I do it as well and am not having to deal with anything major at all. So happy that you have such a great hubby and friends, and I bet it's hard with your mum 300km away. I'm also happy that you have found some others in your shitty boat :( Just keep (swimming) paddling lovely, we are behind you 1000% xxx
1 reply · active 567 weeks ago
It's wonderful that you have a fantastic husband and friends. Thinking of you x
My recent post Escaping and finding clarity
1 reply · active 567 weeks ago
just sending you lots of hugs your way x
1 reply · active 567 weeks ago
It's totally understandable that you're feeling a bit dazed and confused, with everything going on for you right now I'm impressed that you can even string a coherent sentence together! Big love from here mama xx
My recent post The One Where Mummy Goes in the Ambulance
1 reply · active 567 weeks ago
I find you such an incredibly inspiring and strong woman Trish.

Wishing you and your family much love. Xx
1 reply · active 566 weeks ago
Paddle on... love that analogy. You are truly an inspiration. I feel privilege being able to follow along your journey with you right now. Every issue in my life seems trivial now compared to what you are going through, and especially more so since you are handling with such grace.
My recent post Our Miniature Dinosaur Series (plus a terrific early childhood education teaching tip)
1 reply · active 566 weeks ago
That pink paddle is such a positive metaphor! Just keep paddling on, Trish! You can do it! xxx

My recent post Facebook Lovin’ Sunday – 16/03
1 reply · active 566 weeks ago
I love your pink paddle, and you as well. Fairy wishes and butterfly kisses to you lovely lady keep on paddling indeed xxx
My recent post Thankful for electricity and the lack of it
1 reply · active 566 weeks ago

Post a new comment

Comments by