I can't "get it into my head".

Hi Fortiemac

I have just had my midnight jiggle with the nurses. Now, now Norberry, steady on. Preventing my pressure areas getting any worse. At any rate, I have a quiet moment to think. 
I agree with you. It seems that nothing remarkable has changed. You do not have extra physical symptoms from the cancer yet. You now know there’s no treatment will change that. So why get all over excited and aeriated? I genuinely can’t see a good reason why you would. 
Carry on living! 
xx

Hello Daloni, and everyone,
(I'm still wondering about the midnight jiggle  ...)
Well, thanks for your posts.  You're quite right about enjoying things as they are.  That my past optimism isn't to be fulfilled, heck, it was fine while it lasted.  It's just that an open mind on my part would have made the phone concersation with the Onco. run a bit smoother.   I tend to be a gabbler and run off with my own take before I actually listen.

You mention you have had value from "...meditating, massage therapy, counselling, ...."  Over the years I sommetimes think I "have been counselled to death", perhaps now I shall get into "counselling for death"!  I spent decades of my life in an alcohol haze (last drink March 23 2007) and was in The Priory on three occasions  (£!£!£!£!).  There was a lot of counselling involved, unfortantely they stubbornly enforce "The Twelve Steps" and AA.  I went along with it, but it wasn't for me.  There was something sinister and cultish about it.  And so far I have proved them wrong, having been abstinent without them for years - "so there!"  I also went into another Treatment Centre two or three times and did get massage there and confess it was relaxing.  So I should keep and open mind.  Meditation scares me a bit.  Somewhat frightened about letting go.  We'll see.  With any luck (am I catching myself being optimistic??) there's time in the future for that.   However, it has be to accepted that Oesophageal Cancer is usually a bit of a quickie.

You also mentioned "emotional work with the kids".  I'm curious about your family ..  I will read your profile ....     MMMmmm, that's not the figurative Journey, rather the Grand Tour!!!!  You've left few of the byeways unexperienced, .....  something of a model for the rest of us.

We've decided to leave the blackberrying until a weekday - hopefully less chance of being bothered by other townies out for the day.  The weather's gone a bit odd today,  the heatwave has faltered, it is quite breezy.

Good to hear that your nurses & carers are doing their job for you effectively.  Keep cheery & thanks.

Hi

You're welcome.  Not been on the site as just had another cycle of chemo which doesn't work well with the heat and had a few problems getting on the site.  My 20 year old son is gay - of my 3 children he is the one I worry about most but I hope he will get to meet somebody nice.  My cancer is HPV related and I have arranged for him to have the HPV vaccinations as he missed out when he was at school and as a gay man he is a apparently a higher risk and it protects against several different types of cancer - I know nothing in life is guaranteed but I feel happier knowing he will have some protection.  I paid for the course but have now discovered that it is free for gay men but I am happy that it is done.  

I would have any discussions and get them out of the way and concentrate on living we may be ill but we still have lots to give and do..  I still get why me? pity days - probably too many still but I hold onto the thought that at the end of the day nobody knows what the future holds and that includes the doctors. x

Hi, in the same club! Still largely asymptomatic though suffering a bit through chemo right now. But life and work and sports largely unaffected. I’ve hopefully got 12 months + yet, but who knows. Only just found this group. Will get up to speed soonest!

Hello TrCyc,  I just found I missed your post.

After three months since I started this I am still confused.  However, luckily and incomprehesibly doing OK.  No treatment on offer from NHS, so in a mad moment I asked for a private 2nd opinion.!  Got onto the private Oncol through The Rutherford (been mentnioned on here somehwere) and I've finished up talking to this Oncol from London (via phone).  He works in NHS at GUy's & St.Thomas's as well as Private. He suggested he could only advise about any alternative treatment (rather, treatment at all) if I had another PET/CT (NHS won't do it for me).  So tomorrow off on an exciting train ride to London (dreading public transport with this damned plague) and the scans in the posh part of London.

I'm partly dreading the knowledge from the scans in case it's all more advanced than it feels.   But I'm comitted now and I should be more sensible on the "ignorance is bliss" ... "knowledge is power" scale. 

I might finally get jolted into really "getting it into my head".

I hope you're coping OK and still able to be energetic?  Crazy how this bloody deisease can mess each of us up so differently.  I know I'm lucky in comparison with others here, but I find the "living for today" advice difficult to follow, especially in these times of pestilence.

Good luck.

Hi, I'm glad you've got a second opinion. At the end of the day it's your life and your health so my advice is to use all the resources at hand to get what you want, and take ownership of it. The NHS has clear commissioning guidelines that they have to follow. I suspect you can't have more IMRT as it's too damaging on the same site. Chemo I'm less sure about - if it worked then you should be able to have more? Then there is Immunotherapy though I don't know if that's for you. You need to find out if it's not possible/healthy to have more treatment, or if it's not in their guidelines.

Good luck!

And keep us posted!

My updates are in my blog but in brief the first half of chemo worked well and shrunk my tumours. Next D-day is post treatment scan feedback. Hopefully more shrinkage and with luck I may get another 12 months asymptomatic!

Make every minute count. I know the anxiety and enormity of it all may get in the way, but find a wee bit of strength to tell the world to **** off, I'm doing what I've always wanted to do.