Am now back in a rather stormy Newcastle, and having hijacked Janet's computer with alarming ease (she really should get a password, like ILOVEROZ) I can share my lacklustre news with you. My CT results are back and they are normal i.e. I have no large melon-sized tumours lurking anywhere. The PET results aren't ready yet but should be available later this afternoon or tomorrow. My consultant is going to text (!!!!) me the results once she knows. Once we know if my PET is negative or positive we can decide where to go from there.
If you remember, I'm in a clinical trial (see here for more details) to "determine whether patients with clinical stage IA/IIA Hodgkin’s disease who have a negative FDG-PET scan after 3 cycles of ABVD require consolidation radiotherapy to areas of previous involvement in order to delay or prevent disease progression." I'm hoping I will be PET-negative and then be randomised in the trial to the group who receive no radiotherapy. That way I get a summer of hippy-esque freedom bopping around Devon with flowers in my non-existent hair. (I shaved it down to no.2 last night; this provided much opportunity for toilet humour when Mother said naively, "I've never done a number two on anyone before" then wondered why we were all pissing ourselves laughing.)
I would find it very hard to decide whether to avoid further treatment as far as humanly possible, or have some radiotherapy just to make sure I won't relapse. It's a tricky decision and this trial is attempting to shed some light on the pros and cons. Hopefully I'll be able to say that I helped patients before I even qualified as a doctor!
People often say to me: "You will have so much more experience of the "other side" and what it's like for a patient - and it will make you a better doctor." I hope that's true; I'd better be getting something out of this other than a lot of sympathy! One thing I have noticed is how little I understood as a patient, and how frustrating that is. You'd expect a medical student to be more in-the-know but I actually felt very much in the dark, particularly in the early days. This was through no fault of the doctors or nurses - they were unfailingly professional and kind - but I don't think they realised how little I knew. I would sit on the chemo ward not knowing why I was waiting so long, for either my Neupogen or for the chemo itself. I rarely saw my haematologists and when I did I was so pathetically grateful I almost forgot to ask my questions. I know how busy doctors are but if they just take that extra time to check that you understand what's happening to you, it's so much less frightening and bewildering. I will hopefully always remember to ask patients if they have any questions for me!!
Other news: after 4 goes (am human pincushion with floppy dacarbazine-ravaged veins) they managed to get some blood out of me which seems to be normal in all measurements. V. relieved not to be anaemic or immunocompromised.
Coeliac shout-out: just been to Jack Sprat's on Chilli Road and was very impressed by the gluten-free menu options. The bread was pretty darn good, as was the spinach burger. yum yum. lots of promising cakes too but am behaving myself at present. Went for a very sweaty muggy run last night - 3 miles with "harder better faster stronger" playing round and round in my head to very good effect.
Off to watch Neighbours now but you'll know the PET results when I do...
Everythings crossed here Roz xx
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