Friday, July 13, 2018

A Very Long Time Between Posts!

I thought I  had better get my act together and do a quick post. The last one was May 30th!!

Basically I am quite well and am not missing the chemo one iota. 

I did go to London to have a meeting with my oncologist, after a long chat I agreed to try radiation therapy which will mean going to London everyday for a month whilst they zap the tumours on my lungs. They also want to zap the two remaining brain tumours plus clean up whats left of the big tumour that was removed last Xmas. 

I went to London a couple of days ago to have the mask made up plus have a MRI and a CT scan of my brain, this is to ensure that when they do use the stereo tactic knife they will only remove the tumour and not any good brain tissue.

Having the mask made up was pretty awful, I hate wearing a full face crash helmet because it makes me feel claustrophobic, so having this thing molded to my face wasn't good, all I could think of at the time was those brave Thai lads being dragged through the cave underwater, if they can cope with that I can do this. When it was finished I wore it through the CT scanner, Christ it was tight

So that is it on the medical front, I am waiting for times and dates for the radiation/stereo-tactic knife surgery to commence ?

So with no chemo for six weeks I must be out there having a ball and enjoying life right ?????

Wrong.... I have been overcome with extreme tiredness and fatigue like you wouldn't believe and Im sure a lot of people just think Im a lazy git! 

I have put a link to it here, it saves me having to type it out because even doing the blog tires me out.

I have been getting out and about, we went away for three days in the caravan which was lovely but I feel guilty as I cant set up the van etc because Im just too tired and weak to do anything.

I had a lovely couple of days up at Stone to celebrate Rolys birthday, it was great to catch up with the boaty friends who we met at Aston Marina back in 2012, we have all become lifelong friends, they are just the best!

We had a lovely dinner on the Thursday night in the flash marina restaurant...thanks Roly

Friday afternoon we went for a mini cruise, it was lovely to take the tiller again after a few years off it.

Once again the tiredness kicked in and I had to retire down below for a sleep, I think I lasted about 30 mins on the tiller!

So I dont have sickness or nausea anymore, my tastebuds have come back a lot but still not 100%

What I now have is extreme fatigue that is just so awful, mainly because there is so much I want to do, I would love to go on a sailing holiday, I would love to explore  the rest of Europe that Elaine and I never made it to.  There are places in the UK that I would love to see, the money isnt a problem....I have sold everything, but when all you want to do is sleep there really isn't any point.

I really dont know whether the fatigue will go or whether this is my new living with cancer life and I had better get used to it. 

Well thats about it for now, even though I intended to write a really long post the tiredness is making it a bit too hard.

I will try and write a bit more often....promise xx



  1. Bless you Paul. I’m learning far more about this terrible disease from you than from any book or programme. And you still come across as smiling. Love you xx

  2. Thanks for the post Paul. We were starting to worry about you! Love the white Imperial Stormtrooper mask :-) I assume it's to hold you down and avoid frying something important?

  3. You're in our thoughts Paul. xx

  4. been worried about you Paul with no blog for a while. Glad you are still about and enjoying...… doing things. Just take each day as it comes which I am sure you are doing. All the best Lynne and Paul nb pistonbroke (now in a bungalow Capel nr Dover)

  5. good to read your blog again was getting worried,all the best paul

  6. Paul,
    Do you realise that you posted on Friday 13th???😁
    Rooting for you matie;one day at a time
    All best wishes
    Chris and Andy
    Nb Ceiriog
    Currently moored in Sheffield basin

  7. Paul,
    Do you realise that you posted on Friday 13th?? 😁
    We're rooting for you - as above, one day at a time
    All best wishes
    Chris and Andy
    Nb Ceiriog

  8. Good to hear your out and about a bit, and read another post, all the best