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

3 minute read time.

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.

Anonymous
  • FormerMember
    FormerMember
    Oh hun, how much time do we waste waiting at hospitals! My last appointment was 10.00am. They were already running 1 hour late. How can they be an hour behind at 10.00 in the morning? What chance do you have if your appointment is three o'clock in the afternoon! As for the blood tests and pharmacy, I won't use the hospital ones if I can help it. I once waited an hour and 20mins at the hospital pharmacy. It's ridiculous. I'm glad they are sorting your pain issues out. You are right about the morphine. They seemed quite happy for me to take it in copious amounts, and in whatever form I wanted! Popping pills, putting on patches and guzzling syrup from the bottle ;-) I was very scared of it to start with, but soon was just part of breakfast, dinner and tea! Well it sounds like you have a couple of busy months ahead, what with family visits and birthday parties to organise. He is 70 so better make it a good one :-) I had better send you some of my sparkle to sprinkle over the proceedings!! xxxx
  • FormerMember
    FormerMember

    Good for you Dyad. I don't know if you have seen much of Lynda Bellingham on telly this week, but she has decided no more chemo and is much empowered for it. I hope you have a cracking family get together and party, and you keep that morphine up high. Take care, thanks for writing x

  • FormerMember
    FormerMember

    Hi Dyad,

    Really hopeful that you have got your pain under control and that you are able to enjoy a decent quality of life. You certain seem to have a packed schedule of the coming months. Don't over do it, and make sure you take time out for gentle walks with your dog. And keep up the mindfulness.

    Thinking of you everyday

    Love Graham

  • FormerMember
    FormerMember

    Thank you for your comments, my faithful followers!  The pain control seems to be working - I think the Pregabalin is the key - have had less pain from the lump in the last couple of days - or maybe it's the steroids.  Anyway, feeling a bit perkier. 

    Miss S - I would use another pharmacy if I could, but Christies is all electronic, so while you are talking to the doctor they are sending the prescription electronically to the pharmacy.  There's no paper involved at all.  So you are forced to use their system.  Our experience of Christies is that the clinical side is absolutely wonderful but the admin is c**p!  But isn't it like that everywhere in the NHS?

    For John's 70th, we are staying at the St Pancras hotel and having a family lunch at the Gilbert Scott restaurant, all arranged and paid for by his loving wife. It will cost me my life savings but I don't care!  He is a steam train fanatic and a great lover of the old LMS (London Midland railway).  The hotel at St Pancras used to be the Midland Grand and was designed by the Victorian architect Gilbert Scott.  John will be in 7th heaven - one heaven for every decade, haha!  I shall try my utmost to avoid chemo until after this event which will be right at the beginning of December.

    And Graham, it was lovely to hear from you.  Yes I am keeping up the mindfulness.  I fell off the wagon a bit during the summer, but definitely back on it now.  And I can do short walks - have just been out for about an hour.  I guess that, since we don't hear from you, everything is rosy in your neck of the woods?

    Love, Dyad aka Jane

  • FormerMember
    FormerMember
    The St Pancras Hotel is a beautiful building, and actually the railway station is pretty good as well! I hope you all have a great well deserved time. Nick