6th May and 43 years old. The TC totally ruined Christmas as this all started on 16 December, still going strong 5 months later - only difference is I'm one heck of a lot less stressed than I was at Christmas. Although this birthday wasn't to be totally without bother...
following on from our snatched conversation with Prof Nicol in the RM we had to follow up for confirmation of the op date and this supposed anaesthetist clinical trial. A few phone calls later and we had set hares running.
NHS has been amazing so far, but it felt reasonable to get some info on dates etc. - I also wanted reassurance that any delay wouldn't materially increase the chance of spread, after all, the operation looked like it was due to be a good six weeks after my PET scan - seems like a long time to me.
I eventually managed to speak to my Oncologist in Brighton (Dr Bloomfield) whose secretary is brilliant and he is also good at getting back when we have questions. He said that, although the operation isn't as soon as he would like, a few extra weeks wouldn't be material and this is still the best course of treatment for me. This made me feel better obviously!
I had been looking at the pattern of growth of the size of my lymph node, and worked out that since 30 December when I had my first CT scan it had grown an average of 1.5mm per week since - going from the original 8mm, to 30mm in my most recent PET scan. They still described it as a little lump - which I guess it is, just seems like a big growth compared to its original size.
Later on we found out that I had been booked in for 1 June for the operation, and they had been forced to cancel someone else to get me in on that date too (sorry, whoever you are). It seems the delay is due to the fact that they do surgery on Mondays and due to all the Bank Holidays, and doctor holidays, they're running behind! Plus, they have to do it with robots - so the robot also needed to be available, and both doctors - Prof Nicol and Dr Maher, would be carrying out the op. This made me feel better, as they are two of the foremost urology experts in the UK as far as I can see - feel very privileged!
The reassurance also helped - they said that Seminoma is pretty slow moving.
I asked if it was worth doing another PET scan before the operation to be 100% sure, but they said there was no need.
Now waiting for letters to come through with confirmation of the appointment and details of the clinical trial (which is apparently 'a good trial' - but I still have no clue what it is trialling. Hey ho!).
p.s. Just watched a programme on BBC iPlayer called 'The C word' - a dramatisation of a true story of a young girl that had breast cancer and was a prolific blogger - eventually wrote a book. Wish I hadn't watched it!! Dramatisation of chemo was scary, and eventually (beware: spoiler alert!), she had treatment (6 rounds of chemo, 28 of radio) eventually it recurred and she died! Don't want to sound insensitive, it was a very sad story, and she was extremely brave, but I should have gone with Jonathan Creek!!
