Not Good Not Bad

Since my last post The Best Laid Plans I had a further light chain test, the results of which were pretty similar to the previous ones.  So not good not bad, just the same. Strangely, the last few hospital lab test results are in normal range but the trial test results are slightly out of normal range and in both sets of tests there has been little movement which my consultant finds reassuring. Perhaps the blood samples don’t travel well to where they are tested in France for the trial!

So the plan now is that there isn’t one! The situation remains the same. I have started my 12th cycle of treatment today and if my test results show any further rises the chances are I will have my second stem cell transplant sooner rather than later. If not I’ll continue with treatment hopefully until around August and then I will have a transplant. I feel much calmer about this now than I did when I wrote my last post. Right now I don’t have the energy to spend on being disappointed about not being able to plan etc because I have flu and am feeling pretty drained. It is not the way I would have liked to have come to terms with my situation but there it is (ideally I would have liked to come to accept the uncertainty of my situation through the path of spiritual enlightenment but we can’t have everything we want!).

I woke up in the early hours of Tuesday morning feeling shivery and with a temperature of 38.5. Oh dear, time to read the Haematology card I carry with me. it operates as a sort of get out of jail free card if I need to go to A&E. It means I should be seen sooner as someone with a compromised immune system and preferably in a isolation room.  Even so being in A&E is a hellish experience to be avoided.

IMG_0505                                                                                                                                         IMG_0502

 

Although I am meant to contact the 24 hour haematology helpline with a temp of 37.5 and over, I knew they would tell me to go to A&E and I couldn’t face that so I piled on the duvets until I felt warmer and slept intermittently. Having survived the night, I then rang the trial nurse, Pippa at 9am. She arranged for me to go to the Haematology day unit and said I would be reviewed by a doctor.  Five hours later I was sent home with antibiotics after being tested, swabbed, examined and X rayed. My temperature had at least gone down but I felt exhausted. Nothing conclusive but the next day, the Italian doctor I saw rang me and said I had influenza and that he would arrange for me to be prescribed Tamiflu.  Flu?  Now I felt seriously ill!  So I have been resting but not bed resting, I am not very good at that, coughing a lot and producing copious amounts of snot. The worst thing though has been the combined effect of self pity, a lot of time spent alone and severe tiredness resulting in very negative flights of fancy about flu becoming pneumonia, treatment stopping, myeloma returning with a vengeance etc etc,  you know where this is going! I must admit too feeling a little like the cat below at times!

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As I am recovering, fortunately I am regaining my sense of perspective.  I hope that as my energy returns I don’t start getting frustrated and anxious about my situation and can retain that feeling of detachment that having the flu has given me.

Ps in case you are wondering, I have had the flu jab!

8 Comments

Filed under Cancer, Health, Life and death, Multiple Myeloma, Myeloma, Relapse, Remission, Stem cell transplant, Uncategorized

8 responses to “Not Good Not Bad

  1. Thinking about you. Eat well, drink loads, get strong after the flu.
    I’m in limbo, too. It’s really hard, emotionally.

  2. Hi Wendy,
    your posts always inspiring, always touch my heart, and remind me to take perspective, I have been reading a bit about the science of perspective taking and there is neurological evidence, I believe, for how it works in a very helpful way. There was a podcast on it which I will try and dig out for you. The speaker is Louise McHugh, you may be able to google her. Anyway its easy to get distant and scientific, Im really sorry you’re so sick, and feeling alone. I salute your ability to reach out when you get caught in feeling lousy, sick and then corrosive isolation of self pity, ( no judgement here at all)
    lots of love to you

    Prue xxxx

  3. terry

    Hi Wendy, I just tried copying and pasting a paragrapth

  4. terry

    “Now I felt seriously ill! So I have been resting but not bed resting, I am not very good at that, coughing a lot and producing copious amounts of snot. The worst thing though has been the combined effect of self pity, a lot of time spent alone and severe tiredness resulting in very negative flights of fancy about flu becoming pneumonia, treatment stopping, myeloma returning with a vengeance etc etc, you know where this is going”!

    As usual, I always seem to share your thoughts, or least in part. Coughing and snotting seems to be the norm for me now, as I’ve had this dam cough on and off since Feb, and just coming to the end of yet more antibiotics. It’s rather annoying, as I have imposed an alcohol reduction on myself, thinking that it may help the antibiotics to do their stuff, but it can’t go on for much longer, (smile)

    Having just got poor blood results, I was planning to have a Gin night this weekend, along with some Bowie.

    Anyway, take care lovely person, oh, did you know? I just heard on the radio that Rooney has a slight groin strain, so won’t be available this weekend, can things get any worse? (smile)

    Terry

    • Hi Terry, good to hear from you again, I was beginning to wonder!! It seems like this cough we have can go on for a while. Enjoy your gin and Bowie night, I’m sure that will make you feel much better than antibiotics ever would!

  5. I had the flu shot and promptly came down with something everyone said was a cold, but it went on for weeks and weeks. When I finally started feeling better, I felt like a Whole New Person… intending the same for you!

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