Oncologist meeting yesterday.

Yesterday I had my first real follow up meeting with my oncologist and haematology nurse since I finished DHAP! It was a so-so affair with some things unresolved.
Some good points to come out of it were:-

• They were both delighted with my progress. "One of the best at this stage post transplant"
• Bloodwork was OK so no need for transfusions. Haemoglobin was down slightly so I just need to watch how tired I am.
• I'm getting an early CT scan (in the next fortnight) as my Oncologist is desperate to know what is going on in there. I'm really pleased about this... it'll hopefully give me some answers and get me out of this state of limbo.
• I'm NOT getting a PET scan. My Onc has lost all faith in them and is going "old skool" with me. They will monitor me for clinical progression for disease... ie things getting bigger... rather than lights on a PET scan.
  
• I can return to work but was advised to wait for the results of the CT scan so I will. I will know the results on 23rd August.
• I'm now free to roam where I please. Go to Gala Days around here and go to the picture house to watch The Simpsons Movie. Woo Hoo!! as Homer would say.
• My shaking and numb feet are neuropathy
• I've dropped some drugs so less to take!

The bad point was that I still don't know what is happening with radiotherapy. My Onc is desperate for me to have it. He doesn't want it to come back and feel that we haven't given it everything we've got. He's writing a referral letter to the radiologists and wording it in such a way so that they'll be culpable if it returns and they've refused me radio again. We'll wait and see.

Finally, I'm famous in the world of Scottish Haematologists and Oncologists. Seemingly my case is discussed in the seedy bars and clubs (and official meetings) where these people meet. It's brought up whenever two haematologists cross! It would appear that no-one can quite believe that I had to go to SCT. I was text book Nodular Sclerosing Hodgkins Disease and should have been cured first time around. My response to ABVD was excellent. The blame has been put squarely at the feet of the radiologists who refused me treatment.

Hopefully some good will come out of my ordeal and it will never happen again. I sincerely hope that the "It's only Hodgkin's" attitude that these radiologist have (the one I spoke to certainly had that attitude) has now gone and they realise that Hodgkin's kills. It might not be as aggressive as lung cancer but IT KILLS!

Day +38