Treatment End Plus Day 3

Don’t overdo it Steve. You need to heal. 

Hi AS Dani says  please don’t overdo it. You've a fair wait for your scan mine was 18 weeks the longer you leave the scan less chance of hot spots. Please take these next few weeks to recover your weight can continue to drop off. Remember your consultants has been there before it’s not a time to loose weight irrespective of how much you need to loose. Not being negative  just realistic these next few weeks can be harder than treatment and the mucus can take weeks to go often replace with the dreaded dry mouth. please take care. 
Hazel x

Steve - sounds like you’re doing your best to keep occupied which is good for the soul but not necessarily for the body! The day after I finished my treatment regime we went to Cornwall as a family. I insisted we should go (it was pre-booked and paid for) and my boys really needed a break - I told my wife to go without me but if I didn’t go they wouldn’t so we went!

I spent the whole week in bed feeling awful and slept all the time and couldn’t eat or drink much although prior to my regime starting I was fitted with a PEG (feeding tube) and yes, I said ‘no way’ when it was suggested to me but it became my friend and lifesaver dropping from 95 to 66kg at my lowest ebb during treatment. By the end of the week I was desperately unwell and we went home at which time my wife decided to take me straight to hospital and I had sepsis. Three blood transfusions later and days of steroids and drugs and I pulled through but the moral of the story is to be kind to yourself even (as you say in your post) that you’ve spent 39 years of self-destruction.

It is great to be wise after the event but I am now and for a second time (four years later) I was told that I should consider a new feeding tube - a RIG. I refused again and again despite seeing the weight slowly dropping off my body and not being able to consume enough calories to get through the day. For a second time, I saw sense and had it fitted and since I have gained 12kg in weight, my energy levels are slowly increasing but there are positive signs ahead. I’m unlucky, I won’t be able to eat or drink ever again because of my circumstances with aspirating into my lungs when I swallow which is a really s*** situation but it’s my reality.

I’d employ you to stay as positive as you are able but understand and recognise that it is perfectly ok to be up and down. Feel free to share any of your thoughts or experiences here - there’s no judgement but certainly some tough talk at times, usually you’ll find someone who has been through what you are going through so tap in where you can…

It’s known as ‘scanxiety’ to many. It would freak me out from MRI to MRI. During the first month I was ok as I’d been given the ‘all clear’ and life was great, positive and blooming. In month two I would start to think about month three and the prospect of getting the next scan, I’d over think things, feel things that weren’t there and worry about the most stupid of things. In month three I was like a bear on a hot tin roof - moody, subtracted from the family and doom and gloom ‘expecting’ the next scan to bring bad news. It was an unhealthy cycle that lasted for a long time until I realised it was eating me up inside and I got help.

There’s no magic recipe for coping but ‘us blokes’ aren’t the best at communicating at the best of times (speaking as a 51 guy) so we are often at a disadvantage with stuff like this and it takes courage to be open about how you’re feeling sometimes…