Thursday, 16 June 2011

Two years since diagnosis and the doctor said....

.......Well, the doctor didn't have to say anything at this morning's hospital assessment.  His smiling face said it all! No noticeable disease progression since the last assessment. Steve's chest sounds good. The cough which he has had on and off over the last couple months has not caused any damage to the pleura which are still firmly stuck together, and there's no sign of any fluid build up.

Because it's now been two years since Steve's diagnosis, Dr T had looked back through all the previous X-rays to see the bigger picture. Comparing today's X-ray with the very first on record, it is evident that there has been a very, very slight progression in the disease over the last 24 months. However, the change is so small as to be imperceptible when looking sequentially at the X-rays taken at three monthly intervals. Because the tumour growth is extremely slow, it is not giving them cause for concern and certainly not something that would trigger a further course of chemo. So, Steve's been signed off for another three months - next assessment in mid-September.

This reminder (as if we needed one) that Steve is living with a time bomb inside him which could go off at any moment, is the trigger to start looking ahead and making plans for the summer. Don't be surprised if we get in touch with you over the next few months to arrange a meet up or a stopover.  

The next week or so is (in theory) to be dedicated to giving the house and garden a bit of TLC. If we don't do the spring cleaning soon, our house will look like Quentin Crisp's apartment in New York which he famously never cleaned, remarking "after four years, you don't notice the dust"  

Thereafter, look out world - we'll on the move again while Leo is still sleeping!


  1. Fantastic news. It is always one step at a time for us meso patients. xx

  2. It's surprising how far you can get Ronny - just taking one step at a time! Keep walking :-)

  3. Excellent news - enjoy the summer.

  4. thanks Amanda - I'm sure we will!


  5. That really is excellent news Linda and may it continue like that for a very very long time.

    I was just wondering, when did Steve last have a PET Scan? If it has been a while it might be worthwhile having one of those just to make sure. Otherwise, please ignore everything I am about to say from this point.

    I just found out that the PET Scan I had in October showed extensive coverage of my right chest while all my X-rays up until then showed no progression. I thought I was still in complete remission. I don't mean to cause unnecessary worry when there probably is nothing to worry about and I certainly don't want to rain on your parade when you are celebrating a wonderful result, but just for absolute peace of mind it might be worth having a scan done. I now know that either my oncologist is totally incompetent or that X-rays don't show up minor tumours. The extensive coverage I had would have been all tiny tumours. But in any case, in the off chance that there is something there, it is important to remember that it is still moving very slowly and what is there would be very small as well.

    I hope that saying this hasn't offended or upset you, as you must know that wasn't my intention.

    All the best to you and Steve,

    Anita xx

  6. Hi Anita

    We have been following your blog, so are aware of what's happened to you. It must have come as a horrible surprise........

    The team here in Oxford don't do scans routinely - not wanting to expose people to radiation unless there is an indication that the meso is growing aggressively. No such indication on the X-Rays. Steve is still feeling great - no pain, breathing not affected. While he feels that way, he wants to carry on as usual.

    He is very much listening into his own body. If he felt any indication that the meso was on the move, we would get in touch with the team at once to arrange a scan.

    Having read about your experience, it may be that we are sticking our heads in the sand. But as you know, everyone handles things in their own way, so we are carrying on as usual, making the most of life and determined to enjoy the summer.

    Thinking off you,

    love Linda and Steve x