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.