Hi Dave
Ah yes. Chemo. Makes you sick and bonkers in my experience. I am three months into a six month treatment and it’s my third time in five years so I think I know what I’m talking about. I’m mad as a box of frogs right now. I am staying at a hotel this weekend doing yoga. I was really surprised and annoyed when the waiter brought me scrambled eggs at breakfast. I don’t like scrambled eggs. My friend assured me that’s what I’d ordered.
So. Yes. It sucks. I was like you five years ago. 40% survival rate for the stage and grade of cancer. I absolutely recognise your rage and sadness and hopelessness in the face of this sucky disease. And the look. Or “the look”. It makes me furious too.
No puppies. No bunnies. No hang in theres. The light at the end of the tunnel might very well be the oncoming train. Feel what you’re feeling because it’s fine. For now. But it’s your life. It’s the only one you’ve got. You’ve got no choice about the cancer. You do have a choice about how you live. I make that choice consciously every day. And today I choose to live well and enjoy myself, even if it means eating scrambled eggs.
Be cool 
hugs n shit
xx
Good morning and I am pleased to see my friend has been in contact. I did see your post yesterday but as we were on holiday I did not have a good connection to get a reply out for you.
I noticed that you have indeed joined a number of the Online Community groups. These are the best places to connect with folks who are on the same nitty gritty side of the rollercoaster that you are on and as you say it is easy to talk about the "Sweet and Positive things". Just give these folks time to reply as like yourself, life at times can be unkind and rough.
The 'New to Community' is like the reception desk into the wider Online Community and 99% of the time it will be folks like daloni that will be around to say Hi and where required introduce you to the various areas of the Online Community..... but you have been able to navigate the site well, as for some folks it can be hard to get a handle on it all.
I am now into my 20th year living my rare blood cancer journey and I can fully understand all the issues you are dealing with.
Like a lot of folks who come and go on the Online Community the multiple layers of a cancer rollercoaster for some folks looking in, can be a complete mystery and I have have been given some rather bizarre and very insensitive advice and words of wisdom over the years.
From my long years the most sensible advise I can give to you is every morning sees a new day, bringing both challenges but also hope.
20 years ago I as told that I would have to live life as best as I could as there was no fix for my condition and it would "get me" in the end...... after 18+ years of numerous treatments I have actually, against all odds, achieved remission - even my medical team were surprised but this also came with the proviso that "Mike, this could come back at any time"
My wife, family, friends and myself have always chosen to keep focused on the future. Sometimes there was no future but we are all glass half full people so we concentrated of making every day matter.
I do wish you well in the days, weeks and years to come.
Good morning (or good night) Dave.
So to give context - I am now coming up to three and a half years post my last treatments.
So the main Nephroathy was actually in my hands and feet and that eventually passed.
I had lots of issues with my knees and yes my neck was bad.
But this issues in my knees and neck were down to the lack of movement and muscle wastage - being inactive for a long time and the chemo can have a negative effect on your muscle mass- it does actually melt some of the mass away.....so pain.
The position of my brick sized growth on my neck also developed very bed nerve damage due to nerves being crushed in the growth.
The Nephroathy did take a good 2+ years to start to clear up. The muscle wastage was also about 2 years but the nerve damage still raises its head.
For the past 2+ years I have been going to a circuits class at a local cancer centre and have been doing targeted resistance exercises to build up the muscles and stretch the nerves, when I miss a week I see the negative effects come back - recovery is a long term commitment and takes persistence and perseverance.
I also have Spinal Osteoarthritis so I also found that all the treatments did have an effect in my spine.
Yoi have to understand that where your blood goes the chemo goes and therefore will be hitting areas in your body that in reality were not touched by your condition but I see the process as clearing out the whole body. As I have a blood cancer, this is even more important as just one bad cell can break away from a growth area and start to regrow somewhere else in the blood stream.
Sk keep as much general activity going as this does help overcome the fatuge and onslaught of Nephroathy.
