Feeling alone, lost and needing to make contact

[Joanm]

Hi there

My name is Joan.  I was diagnosed with Mesothelioma in the right pleura two years ago.  Treatment started with immunotherapy which reduced the tumour.  Marvellous technology but it can  have some nasty side effects such as neuropathy in the feet and lower legs.  Due to the high risk of  becoming immobile we moved onto chemotherapy with the nasty nausea, fatigue etc every three weeks. Not all in vain, the tumour reduced a little more and has temporarily stabilised so there has been a break from treatment for 4 months.  
Surprisingly this has been a miserable time.  My thoughts have become negative, I have lost my appetite and feel sick and very tired for the first two hours every morning and after dinner at night.
Experiencing strong pain that Dilaudid barely controls due to fluid in the lung.  I am feeling alone and lost and desperate to communicate with someone who understands or has been through similar situation.  I understand it’s just so difficult for us all and we are all just trying to cope.  

[Richard1]

Living with health issues sucks. No other way to put it. I’m having a rotten time just like you and I wish their was a big red magic button to press to make the hurt go away. For me I try to keep busy, wake up do house work, go to my full time job, look after my family and new dog. It’s extremely hard to do but I sometimes forget briefly about being sick through repetition. I feel and share your pain. Make a cup of coffee go outside look at the sky and drift away, I will be looking too. 

[Joanm]

Hi Richard

You are amazing.  Thanks for your encouraging response.

I admire the way you keep going.   I find when I am out doing something with other people, it’s easier to manage the symptoms.

However as I am sure you find, nasty fatigue kicks in after a few hours, usually 3.30pm onwards.  Unlike you it’s just my lovely supportive husband and I which means I am able to give in and sleep for a little while.  
I’ll will keep on praying for that red button to turn up for you.  

[Richard1]

G’day Fellow warrior  Joan.

My weekend nightmare. Rushed to the hospital  Sat 1150pm, Mum was unwell. Long story short, it was influenza B and asthma. Made it home Sun 1210pm. She’s better now. I went to bed 1pm and slept for 14 hours. Missed my nephew’s 1st soccer match. Now it’s Mon 630am, dressed for work sitting on my couch next to my sleeping dog who’s 6 months old going through her first period. Such a glamorous life. Hope you had a better weekend.

[Joanm]

Hi Richard

That was some weekend! Pleased to hear that your Mum is ok  A hospital is not the most comfortable place to be sitting and waiting even if you are well. 

Not a great weekend here. Consequently  an urgent CT scan  and  visit to the pain specialist are on the cards for today.  

I hope today isn’t too draining for you and you get lots of quality sleep tonight.  
Best wishes

Joan

[Maddi_CCNSW]

Hi Joanm

Having a cancer diagnosis and going through the treatment can be difficult and isolating.  I hope you find the comments on this forum helpful.  If you live in Australia you can also call our 13 11 20, information and support line.  They can offer additional emotional support and may be able to direct you to individual support if you need it.

I you live outside of Australia, please speak to your GP or oncology team about extra emotional support to help you get through this difficult time.