I have no idea what to title this one

I had been planning on my newest post being titled ‘You’ve got to be codding’ – codding being a word interchangeable with kidding and in this instance relating to a cod liver oil capsule that was taped to the back of my head during the recent MRI.  I don’t know who was more surprised – me on removing the tape and finding the capsule or the radiologist on me handing her the tape and her finding the large quantity of very short hair attached the tape.  However in light of the way today’s gone this isn’t the post I anticipated.

Today, and from yesterday afternoon really after getting a bag of blood in the early hours of the morning, I’ve felt so much better in myself.  I haven’t felt bad, bad but tired and certainly fuzzy round the edges.  In fact I think it was Tuesday I had the blood because thinking about it that was the morning I had the MRI scans, heart ultrasound and lung function test then a bag of platelets and lumbar puncture in the afternoon – I guess I shouldn’t have been as surprised as I was when B looked at me incredulously when I said I couldn’t remember exactly how I’d got the big bruise on my right thigh – when he said Bud had done it it all came back to me but initially I could only recall I’d had some sort of mishap and absolutely none of the details.

Now let’s not get too excited about the apparent wellness I feel.  Although obviously while feeling well is a good thing it may be slightly trumped by actually being well.

I’ve had various medications stopped or changed to reduce the risk of seizures and indeed haven’t had any more.  I’ve had new potassium and magnesium meds as these levels were a tad low.  As of yesterday the results of the MRI on my head looked fine, the one on my shoulder showed myeloma lesions but needed comparing to a previous skeletal survey to see if any were new.  Initial results of the lumbar puncture didn’t show anything immediately obvious.  There was a slight increase in lymphocytes (one of the defensive cells) – normal levels are 5, mine were 14.  If they had been in the 100s some sort of blind treatment would have been required and if they’d been 4 or 6 they could have been left but 14 probably needed something doing but were of a level that could be investigated further to establish the correct something.

This morning the Ward Sister/Manager stopped by (well actually she was seeing to our room today so she’d already been by a good few times) to say that one of the docs had come out of the morning meeting to say that Prof or the other myeloma doc would be speaking to me and I may want a family member with me.  Sister had no idea of the exact topic of the discussion as she wasn’t in the meeting as she was tending to the ward today.  I said there was no point me even ringing B as he’d be in bed and the phone wouldn’t wake him so she said if I wanted she’d be there – I said yes.  I wasn’t ringing Auntie Ann as she isn’t even actually visiting today as it’s her last day in work – she’s retiring.  There’s a lunch out and maybe something after work so although I know she would have wanted me to I wasn’t messing that up.

I had time to google things like ‘myeloma lumbar puncture’ and ‘myeloma spinal fluid’ before Prof took a seat in my comfy chair while Sister, a Registrar and another doc, who I have to admit I’m not sure is yet a Registrar or not but who I like very much, took positions at the bottom of the bed.

Basically the lumbar puncture showed plasma (myeloma) cells and some of the damage to the shoulder would appear fresh.  In view of this despite the DT-PACE, and the seemingly shorter and shorter remissions between treatments,  Prof felt that he couldn’t justify the resultant loss in quality of life against possible benefit a donor transplant would provide – I think I have that correct.  I’m not going to kark it immediately but, baring a miracle, we’re not talking years and years but for the first time EVER the ‘how long?’ question was on the tip of my tongue.  No treatment specifics have been tabled but I said what I’ve now said three times I think, last November, on the decision to go ahead with a donor transplant and today, I’m not afraid of dying but I am of… ‘not trying’ Prof finished off.  I’ve never said this to him directly so it looks like they talk to each other.

The only immediate question I thought of was in view of the fuzziness I’d experienced and so I asked about ‘mental deterioration’ – I don’t know how come I was so formal – but was relieved to hear that wouldn’t be an issue.  Thinking about it and especially considering he said they were always very upfront with me that wasn’t necessarily a compliment!

Sister sat with me after the docs had gone, rubbed my leg and said if I wanted anything she was on a long day.  I asked later if one of the docs could go through it with B when he got here because there was no way I wanted to be the one to tell him.  That of course didn’t pan out because I couldn’t say everything was fine when he phoned after he got up but one of the docs is going to come chat to us when B gets here and answer the questions I have by now.

B’s just got here (well nearly an hour ago now) and is not thrilled that he won’t be getting to see Prof or the other myeloma consultant this afternoon but I’d just asked Sister if we could see the other consultant tomorrow anyway and B chipped in that he’d like to see the Myeloma Nurse too.  Sister’s just come back to say they’ll both call round two thirty tomorrow.

There’s not exactly a set treatment plan in this instance as it is a rare complication of myeloma, which I’d managed to work out for myself before I knew what it definitely was.  When I asked Prof about this, and he’s not exactly a spring chicken (I am in no way saying he’s old just experienced), he said that with me the total number of patients he’d dealt with personally with this complication was now 2 – I resisted the urge to ask what had happened to number 1.

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12 responses to “I have no idea what to title this one

  1. P, I sent you an e-mail about the treatment they use here. It works! No, this is not a good development but, yes, there is a treatment, and the man I told you about in my e-mail went from VERY bad to doing great. They would have done an allo on him when he recovered, but could not find a match.
    HUGS from Jersey.

  2. I’m confused. Was it your capsule or did someone else leave it in the MRI? All sounds a bit fishy to me.

    Denise you are a star.

  3. I’m with Lorna ….. Was the cod liver oil capsule taped to your head on purpose, for a laugh or by accident?!

    Sending you hugs for the other news.

  4. Miss P … Doctors, scientists, theologians, none of them understand the strength of spirit you possess. Most of the wonder of life occurs without the involvement of the ‘experts.’ What ever it is that you draw on, that enables you to continue to fight so ferociously, is more effective than any treatment plan, drug combination or stem cell procedure.

    Whatever the source, Miss P, continue to trust its need and ability to care for you.

  5. We are always our own best healers. I send you strength, prayers and great affection.

  6. I am not entirely sure I understand what the latest “complication” is, but I don’t think avoiding the transplant is such a bad thing. I keep reading about people doing worse after those, instead of better, and look at my FL who has had none of that fancy stuff and is doing “fine”. The other day, I was in a meeting with the head of our local medical school, discussing the University Risk Register, and we reached “Risk of death or serious injury while undertaking University-related activities”, and he said “Risk of death? 100%… the only element of doubt is in the timing!” I saved that little gem to report back to FL. They gave FL two years… and that was five years ago. I really truly believe it is all about *quality* of life. And that’s what they should be concentrating on. They should be giving you yarn on the NHS, not drugs! ;)
    But, nevertheless you deserve a hug. Lots of hugs. Soddit.

  7. It seems my Reiki and Intention machine need to be cranked up and aimed in your direction for full power for awhile, so consider it done. I don’t have any smart remarks or ideas to offer, but am also sending along a hug basket of hugs from the jungle… (((_you_)))

  8. Paula you’re an inspiration. Thinking of you and sending love xx

  9. I’m trying to get updates but don’t know how to sign in. Paula I’m sure I will see you again. I love mums (Janet) buddy and would like 2 please xx

  10. paula, i sent you an e-mail last week. but just reaffirming my support and affection for you, and continuing to BELIEVE that you will find your way through it all. there are a lot – gazillions! – of bright lights of love, good wishes and hope shining down on you from people, many of them whom you have helped so much through your blog, who now want to help YOU!
    sending lots of love and warm hugs. xoxo

  11. Julie Zimmer

    Sending energy and warm fuzzies, probably not nearly as nice as the ones you’d be crocheting if you are feeling up to it, but the warmest and fuzziest I can send via cyberspace.

  12. I second what Stephen said above … ♥

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