Monday, 17 August 2009

Life is a rollercoaster.......

Have you ever felt your heart drop into your boots? Have you ever wished the clumsy butterflies dancing in your tummy would flutter away? Have you ever felt the fear on a clear summer’s day when not even the sun can chase the darkness away? Well I have been feeling that horrible tickly dreaded sensation since Friday when Paul had one of ‘Those’ conversations with the doctor. They said that his blood samples appeared to show signs of Lymphocytes which could either be part of the infection left over or that the last round of chemo has had no effect on the Cancer. They then came back to confirm it was lymphocytes and proceeded to tell Paul that he was going to have to make some tough decisions about his treatment and that although there is probably one drug left to try, the best option might be palliative care which he could receive at home and basically means giving up treatment and waiting for the inevitable to happen! Tough bloody conversation indeed…….

I can’t tell you how devastated we felt and feel at the idea of just giving up. Although it has knocked the wind out of our sails we have emerged in fighting mode again. I’ve been doing lots of research into clinical trials; I’ll probably get back in touch with Prof Montgomery as although this isn’t his field he might have some advice. Also got the wonderful Natalie and Tamara and Paul’s sister Claire on the case and we are determined to explore every avenue, leave no stone unturned.

In the meantime the doc on duty over the weekend said that his white cell count was going down which doesn’t usually happen when the disease is on the uptake and that the markers (not sure what they are) looked different to when the Lymphoma was around before. If I’m confused then no doubt you are too. The reports are contradictory. What everyone is agreed upon though is that we will know nothing for sure till he has a PET scan (scheduled for tomorrow) and the results of a bone marrow sample (done today) come back. So fingers, toes and everything crossed that by some Stevenson miracle and despite evidence(ish) to the contrary, he has managed to kick this fucker back in touch!

So we’ll not give up hope and somehow I feel that we will be thrown a lifeline – how that manifests itself I don’t know but I have a feeling it will happen. I know you guys will give up hope either. So get chanting again for remission, remission, remission. Let’s prove the doctor’s wrong. And if any of you have a few spare minutes then get on the internet and look up ‘Peripheral T-Cell Lymphoma’ – more brains than just mine would be good in terms of finding useful information. Not on the disease itself but perhaps on drugs that are being used elsewhere or trials being performed – I may, after all, miss things in my nightly internet trawling.
And if we do have to ship him over to another country or pay for drugs we will defiantly need some fundraising ideas. You can either leave a comment at the nd of this or email me at:

Me and the kids hung out with Paul over the weekend in his room which was the best way to kick me and Paul out of any sullen ideas that our life together is doomed. It reminds us what we are fighting for and what we have to look forward to and makes me determined that there is no way I am bringing up those two little reprobates by myself! On Sunday the doctor came and did his round and the kids waited relatively patiently. Cassidy very politely said goodbye to him when he had finished and Kitty blew a massive raspberry at him! I’m not sure he was used to that sort or response to a serious clinical conversation. Ha Ha! If there’s anything that brings you down to earth it’s them.

Will let you know the results as soon as we have them

p.s Paul is frustrated that he keeps singing the Ronan Keating song “life is a rollercoaster……” whenever things are a bit bumpy. And being a mischievous mutha he wanted me to mention this in the hope of sharing the irritating affliction with you all. Believe me I have caught it already…….

p.p.s Has anyone noticed there seems to be a squirrel following this blog. Paul will be quite tickled by that.


  1. Bloody Ronan Keating and even bloodier cancer. If, if, we need to fundraise you can count on me. And I keep meaning to visit but worried we'll be in the way with so much on -and sure you and kids would rather be with Paul than anywhere else if you can.
    Oh - and kids have now got swine flu. Joy!

  2. WOW Hannah, just found your blog, bloody hell that is some heavy shit, but you obviously are one tough family. Will keep you in my thoughts, just got back to Japan and wanna come home...jetlag jetlag

  3. Hi Hannah

    Myself and Amber have already got the ball rolling on a fundraising evening. Also, I work for a research company called Synovate, we do oncology research so I've asked around about clinical trials and new treatments in this area. I'll let you know what they say.

    Thinking of you all,

    Aoife x

  4. Firstly Bev - would always be lovely to see you - without swine flu obviously!

    Pam - watched your London visit via Facebook, can't believe it's been so long since you came home. Love looking at your amazing pictures - wierdly had word from Clova tonight after many years....

    Aoife - thanks so much - means a lot to the both of us it's amazing thatyou work in oncology research now and very fortuitous for us indeed xx