To have chemo or not to have chemo - that is the question

I haven't updated my blog in a while.  I've been away for a couple of short trips - one with hubby and one with a group of friends - but it was hard for me to enjoy myself as I've been feeling increasingly unwell.

Yesterday we went to Christies.  I won't bore you about the 1.5hr wait for a pointless blood test, or the 2hr wait to see the consultant, or the 1hr wait at the pharmacy, or the fact that we didn't see the consultant at all but one of his registrars.  Actually, his registrars are so good and so competent (and have read my file and know all about me), and the consultant is in the next door consulting room seeing another patient, and the registrar goes to discuss me with him during the consultation and comes back with his opinion, that it's almost as good as seeing him face-to-face.

The meeting was supposed to be about which chemo to give me and when to start, but I've felt for some time that I'm just not ready for chemo at present, if I ever will be.  Luckily, the oncologist completely agreed with me, so that's a huge relief.  You have to be well to have chemo which is going to make you ill again - crazy, isn't it?  So we didn't discuss chemo at all but concentrated on pain control, as at the moment that's all I care about, especially the pain caused by the growing lump in my neck.  The other concerns are total lack of appetite with associated weight loss (BMI now down to 17.5) debilitating fatigue, and certain indications that the cancer has spread to my vagina.  So the onc came up with a plan of action:

• add a nerve pain drug (pregabalin).  After only one dose I think this is going to be much better for me than amitriptyline.
• Increase morphine.  The oncs don't seem to care how much morphine you take.  This one actually said, 'the amount you need to take away the pain is the right amount for you'.  Well, that's reassuring, because like a lot of people I'm still a bit scared of morphine and try to ration myself.  Apparently this is unnecessary.
• Put me back on a steroid (dexamethasone) for a month - for appetite, energy etc.
• Put me on a week of strong antibiotics (metronidazole) in case the vaginal thing is actually an infection (unlikely but a precaution).
• discuss my case at the next MDT meeting to determine a) whether it's possible to have further radiotherapy to the neck lump.  Apparently this can be done as it's a year since the last time they irradiated that area, but would have to be approached from a different angle - or something.  I know these short bursts of palliative r/t really work (for a time).  The five fractions they did on my spine were miraculously successful. b) whether what the onc thinks could be a vaginal fistula thingy could be mended surgically - apparently tricky and not always successful, and anyway do I want any surgery? (no), and if not, what can they do about it?  Next step is probably an MRI scan but I don't know when that will be.

I'll be going back to the hospital on 29th October to hear what the plan is.  So that's where we are for now.  Curiously, I feel happier about things than I did prior to yesterday.  The pain is being dealt with; I'm not to have chemo for the foreseeable future; my brother is coming over from Canada in November to see me; and I won't be on chemo now before my husband's 70th birthday in early December (I'll make certain of that!), for which I'm organising a small but spectacular family party.  The fact that all this time the lumps will be growing away is, frankly, for me less important than all of the above.