Home again

I forego my creative space (I managed to start a shawl yesterday) in lieu of bringing you the following.

The doc briefly bobbed in to my room this morning to ask why I didn’t take Aciclovir or Septrin and I informed him it was because I didn’t take steroids.

He called back in later this afternoon about 2:30pm (see I’m so considerate I’ve nixed the whole 24 clock thing) to say that my ears must have been burning as I’d been discussed.  The report on the heart ultrasound confirmed that no infection could be seen.  Our Prof stated that I had presented like this when the myeloma relapsed in February so basically I could go home, keep taking the tablets and come back to clinic a week tomorrow.   Now I was graciously enough not to point out that ‘someone’ wearing jim jams, sitting on the bed and looking remarkably similar to me had in fact said the same thing on Tuesday ie, when the Revlimid kicks in the temps will settle down.  I believe I may also have mentioned it to the radiographer.

B knows me too well  he’d been there all of five seconds before he asked if I was okay and when I said ‘Yes’ he said ‘Well you don’t look it round your eyes’.  Well that would be because the rest of the conversation went like this…

‘You know it’s serious.’

‘Yes.’  Polite laugh

‘People must have said that to you before.’

‘Have you ever spoken to anyone else about the myeloma?’

Glazed expression – ‘Well I chat to the ladies in the wool shop a lot and like who else – man on bus, women walking her dog?’  ‘Here?  Or at Whiston?  Well there was the doctor there and then we came here and we’ve recently seen the transplant doctor…’  Trailing off in a I really don’t know what else to say way.

‘Have you spoken to anyone in palliative care?’

‘No’ slightly high pitched

‘Would you like to?’

‘No!  I’ve always taken the view that I’d cross that bridge when we came to it.’

‘Well if you want to you may find there’s someone who can be really helpful…’ – okay there may have been something else said but things went a bit fuzzy about then.

Now Chris arrived to be a participant from the ‘serious’ bit so when B said that I didn’t look okay she said she’d go (declining a lift home) so we could discuss things.  So we did and then we discussed it some more in the car on the way home and I had a little cry and then B got teary and had a coughing fit – not exactly getting hit by a bus but definitely potential road traffic accident potential.

So I have it on good authority that B will be saying something when we go to our clinic appointment.  Chris rang me before and we both came to the same conclusion independently regarding the ‘serious’ question.  This doctor doesn’t know me, he doesn’t know I am generally happy so he maybe thought that I was so happy because I was completely oblivious as to the ‘seriousness’ of the myeloma situation.

So I’m happy to be home, am tired but feeling reasonably well and have so far only nearly ended up in tears twice more – the second time when B went to work when I would gladly have given his left testicle (to make a common expression as polite as posssible) for him to stay home.

12 responses to “Home again

  1. Bridget Rochfort

    Hi Paula I am so glad you are home again, be good if you get to to stay there a bit longer this time!! As for the stupid individual and their serious conversation I really admire your self restraint , how you didnt plant one right on his chin is amazing!! My father in law had recieved the news he had advanced kidney cancer and less than a week later a nurse was asking him where he wanted to die I was so angry with the stuoid woman for knocking the hope out of him Mind yiou he made her suffer for it in the way that only cantankerous 80 year old men can , by being blooming awkward as hell !! The ability to read people is such a vital skill for professionals we deal with , especially in areas such as this , your doctor had no right to make assumptions about youon the basis of a short acquaintance Grrrr!! Sorry rant over Paula Stay well and I am sure your lovely smile will be back before you know it love Bridget x

  2. So glad you’re home. Just no place like it when you’re feeling under the weather. These conversations are so heavy. Tim is a brave warrior, like yourself, and his doc has done this to him before too. He knows I’m the researcher and doesn’t know what Tim really knows about all this MM business, so he makes
    dang sure HE tells him when a decision is being made.Praying for you Paula. Hope these drugs kick in and your system gets a “leg up” on things
    right quickly.

  3. there needs to be a “here’s a hug” button on this reply function.
    I am remembering the day I answered the door from inside hubby’s hospital room and it was a hospice worker ready to come in and give us some attention. A certain kind of shock set in and I sent her packing. Well, that was 2.5 years ago. There wasn’t and still isn’t an expiration date stamped on the bottom of his foot. Keep them combing through those lists of drugs and combinations, DVPAC Vel Dex Rev Cytoxin biaxin Carfilzomib blah blah more initials. Knit one, purl one. Knit one purl two. Knit three purl one and a half.

  4. Hi Paula,

    About a month after an operation to remove a plasmacytoma from my chest I was pulled into an office to discuss some paperwork. I was fatigued from radiation therapy and not as aware as I normally would be. An administrator pushed some forms in front of me saying that we should discuss a living will and put in writing whether or not I would want to be resuscitated.

    I was a bit taken back and went directly from the meeting to find my oncologist and an accurate prognosis. Explaining what had transpired, he picked up the phone and called the administrator and proceeded to rip him a new, whatchamacallit.

    He put the phone down and paused to regain his composure. Then he turned to me and said, ‘ The most important element here is your attitude. Finish the radiation treatments, and while we determine the next step, don’t listen to anybody. Each patient I care for is a unique puzzle and you’re no differrent.’

    I took his advice and despite some rough patches, I’m here nine years later.

    Blessings, Paula,


  5. The thing that hits me about this is that there seems to be very little continuity in who you see – this can’t be good for effective communication. I could happily strangle that doctor on your behalf. And since when do you start having those serious conversations with a patient you’ve met only briefly?

    I’m with Julie – where’s the ‘send a hug’ button? Your positive attitude makes a huge difference – hang onto that and get the knitting out (though maybe not Julie’s pattern!!)! So glad you’re home.

  6. Hopping mad, I am! I mean, REALLY! Uffaaaaaa!
    As I was reading your post, Dr. David Servan-Schreiber popped into my mind. After his cancer diagnosis, he fought against this sort of rubbish. I mean, how can our doctors be so totally unaware of the incredibly negative impact that their taking away hope (or trying to take away hope!) has on us patients? Yet they are. Silly beans. Have a look at this short article Dr. S-Schreiber wrote a few years ago: http://www.odemagazine.com/doc/61/when-hope-heals/
    So don’t let all this silly talk rob you, not even for a second!, of your lovely smile and your positive attitude! Bloody ‘ell!
    As Dr. D S-Scheiber notes, statistics are not certainties. And that, incidentally, has also been confirmed by many patients who outlived their docs’ dire prognoses…Norman Cousins, Michael Gearin-Tosh (= MM patient who wrote “Living Proof,” a great book, btw) and Prof Stephen Gould, just to mention a few…And hey, our own David Emerson…So there!!!
    A big squeeze from Firenze! 🙂

  7. Now, does Bud react to belly scratching like this little guy? http://www.youtube.com/watch?v=OgrZ5Dtsi-E (it goes on way too long, but still, I’ve never heard a dog make a noise like that…:-)).
    More laughs: http://www.youtube.com/watch?v=Nsxpuy_KKww (my favorite: the ladder…).

  8. Paula, FL and I are sitting here steaming at that big-mouthed doctor. It sounds like he was seeing a statistic and not an individual. Of course, we weren’t there, but we are both hoping / praying that he was being a total numptie and should be shot at dawn. We hope you get a proper consultation when you go back next week… and in the meantime – woo hoo! You’re home! BE WELL!

  9. And here I was, assuming that only American doctors could be such jackasses.

  10. For Criky-sake, we all know that MM is serious business… what a stoopid remark. Obviously he didn’t finish at the top of his class!

    I am beginning a NEW intention: I am intending that 1) either Numnuts wakes up between now and next week or 2) another, better, more awake and intelligent lifeform operating as a doctor is brought in for the best possible consult for the highest and best good of all concerned, so be it and so it is…whooooo! (And by the way, I am grateful for you not having to go through some nasty kind of surgery to determine the loci of the infection!) Sending you hugs from the jungle!

  11. Paula, my heart breaks for you and I find myself wishing you weren’t an ocean away. I just don’t know what to say about such a conversation with a doctor who doesn’t know YOU. How I wish we all could love on you, encourage you, bring you your favorite cake and a cup of tea, hold you up when you feel weak, and give you hope for the future. Be strong, be courageous, let B give it to um, and keep fighting. There are certainly options out there for you! EZ and I have you on our hearts and minds, and in our prayers, daily…that your next appointment at the Clinic would be much more encouraging!

  12. Pingback: Clinics and chips & egg | Feresaknit's Blog

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