Monday, 27 September 2010

What next? Thanks Sarah for asking!


Feeling a bit better than last time and am listening to advice to give it time...I have been throwing myself into normality (whatever that is!?!) and need to take some of my own advice, take a step back and regroup again.

I have my first 9 monthly CT scan Sunday morning at 08:40 (I know....a Sunday, that is due to the committment of the local teams to keep waiting down to a minimum)in Chesterfield and my second 3 monthly blood test in a couple of weeks so things are moving on...

After having an email conversation with the lovely colorectal nurse I feel a bit more settled...In my last post I had requested a PET scan (more detail) and was turned down gently, I then sent a further mail and have received a positive response that my case is being discussed, therefore I am going for the CT scan and will continue with further discussions with my care team as to early detection methods. The likelihood that my C2, T4, N2, Mx Adenocarcinoma may return is pretty high so I am taking no chances. The location and type denotes whether it is terminal or not, sobering thought alert, read on to see the response:

I am going to put your case to the MDT meeting and/or Mr S for discussion.
Your first surveillance CT scan should be anytime now anyway.
I can quite understand why you feel a PET scan is best but you know there is
more to it than that. Some metastatic disease is treatable by surgery eg
operable liver secondaries whereas peritoneal or lymphatic disease would be
chemotherapy and we are talking palliative disease.

I think you should come to our clinic one Monday afternoon once you have had
your scan and I have had time to present your case and then we can discuss and
answer all your questions. mr S is away next week so I wont see him for a
couple of weeks.

Do you think this is a good idea?

Do think it is a good idea, absolutely...So my plan of attack is simple albeit exhausting...

1. Pray and request further worked before so it can again...

Look at the T4 chart to see the extent and with 11 out of 37 Lymph nodes, well I will leave the thought to you...

2. Continue with my daily diet of healthy green juices, wheatgrass, barleygrass powder, E3 Live, Vit D, C and multivits, glucammune, probiotic powder, EPA among other things and my regular contact with my integrativ therapist

3. Contacting emminent oncologists around the country for advice/ comment on my case...a little unorthadox I know but I can't sit around waiting

4. Regular EFT sessions with to be worth it!

5. Regular contact with my NHS care team to keep asking for further testing...some may not want to be a nuisance but I absolutely do!

It seems quite poignant that my journey is moving into checking for return and my dear friend Carole is to go under the knife on the 4th October. She has been so brave and has inspired me to question, question, question as she is now an 'official nuisance'. Because of Carole I am not accepting the term 'standard NHS practice' and will work with my NHS care team to look for other ways of early detection! Thanks Carole you are a star!

6. Pray (yes I know I have it twice) but it is very important to me so it deserves it...people always ask why/how can your faith stay strong when you have this horrible disease...well there is a purpose and reason for everything...for instance I was run over and injured seriously about 25 years ago (broke leg badly, fractured ribs which punctured my lung, broke collar bone and shoulder blade and dislocated my elbow) If I hadn't have been through that I wouldn't have met Fran - ask me one day and I will tell you why I have come to this train of thought. Therefore me having cancer has a purpose, maybe it is the work we are doing on the cancer research site, maybe to meet friends like Carole or chat with one of my oldest friends Jamie about his cancer journey, or to chat with my friend Tanya in the US (who calls me her Tony) as her life comes to an end (she is alive 16months after being given a 6 months prognosis so she is hanging on in there and hoping she will continue), or my friend Shents, she looks great with a skinhead (brings back memories) or have a mentor like Rodis and help her through her loss as she has helped me, to bring me closer to my family who have supported me through this or realise what a great company or boss that I work for... maybe I just don't know where this journey is taking me but all I know is it aint over just yet...

Better had go and eat something as have home made (by my Fran) Blackbean Soup and tiger rolls waiting downstairs!

Much Love to you all and just before I go...don't wait like I did to write a list of things you want to do before you it now however young or old you are... I am learning to ride a big motorbike (no Fran you can't wrap me in cotton wool!) I have already passed part 1 of 4 so becoming a realisation :-)

T xxx


  1. I'm going to make you a badge for your blog soon - a real 'official nuisance' badge :-))

    Seriously though, well done for persistence and not caring if they think you're being's your health and it's your right to fight for what gives you the best overall chance.

    Blackbean soup and tiger rolls...yummy...I'm coming for tea one day :-)
    Much luv to you and Fran xxxx

  2. Absolutely you are all coming for tea one day Carole...

    I will see you soon and will give you a call in a couple of days!

    T xx

  3. Yay, Tony - Glad you sound more positive. Being an 'official nuisance' suits you much more. Wear your badge with pride!
    Sadly, I am no longer sporting a skinhead. But I did turn up at my son's Middle School yesterday to meet the teachers sporting a silver grey Mohican! The kids thought it was great - not sure what the teachers thought!

  4. Nice one about the mohican...obviously my next fave haircut! Let's see some pictures on your blog!

    T xxxx

  5. Keep on scrapping big guy!

    If we can all follow your good advice then take a leaf out of our books and carry on listening to your own wise words and the desires in your big ol' heart.

    Take care Tony, and brace yourself for one of those manly back slappin' hugs.

    David [x]

  6. oh wow what a lot for you to take in , you know we are all here for u ,fran charlotte , catherine any thing u want us to do , am doing the praying bit !motorbike sounds good ???? although u scared me the first time round (yamaha??): ( keep positive !:) we will see u soon on way back from healaugh (9 oct) loadsa luv ma n pa , xxxxxxxxxxxxxxxxxxxxalso we r keeping your new friends in mind luv to them tooxxxxxxxxxxxxxxxxxxxx

  7. you are still our hero tony just wish i could do and say something to help !!sending rainbow wishes all the way!!love ya big bro!!!!xxxx

  8. Tony,
    Just wanted to say hope the scan goes well tomorrow....
    I'm assuming you get the results in a week or so?

    I'm emailing you a mobile number that I'll be using in hospital so pls text me to let me know all looking good as soon as you know.
    Much luv, Carole xxx

  9. Carole, you have so much going on and are taking time to wish me well, that means so much to me...thank-you!

    Much Love xxx