The backwardness of writing

Not sure what to call this entry, but I guess a title will occur to me once I see what I’ve written. I love the backwardness of writing…

It feels like an age since I wrote anything, but just checking it’s actually only been 10 days.

It’s been a very full-on, busy 10 days of feeling pretty good, enjoying food and eating well, having energy to walk, drive around and play tourist guide for some visitors and most importantly, rarely thinking about cancer and its treatment. I have been feeling almost normal and have been able to forget for long hours at a time that I am an ill person. I even managed to feel a bit guilty and fraudulent using my blue badge… but not for long. A friend reminded me that I would really need it after the transplant, so I took the “feeling good” days as a gift.

Most days I could forget for most of the day and then usually around 6pm, I would gradually experience a soporific weariness and middle back-ache to remind me, especially after I’d done a lot of driving, walking and interacting with people. But with a couple of co-codamol down my throat, I was able to keep going till after dinner when my visitors went back to their hotel. I had a few days off, but they were here for 6 days, so it was quite demanding.

After they left, I spent quite a few days waking late, lazing around, wondering why I wasn’t up to doing much, but finally realised I was exhausted and needed to recoup my energy. Having said that, we had managed to ride on the steam railway in Matlock, take in the tram museum with tram rides in Crich and visit Chatsworth. They really enjoyed it… and so did I!

While feeling well and being busy, I’ve not had time to write but also not really felt the urge to do so – didn’t have much to say to be honest. Maybe my ordinary life doesn’t warrant writing about…? Well, I did begin this blog with the intention of recording my journey with myeloma and not simply as a day-to-day diary.

I’m writing this early, before my morning shower… that’s the one where I have to start using the antimicrobial body wash. Yup, this is the week when it all begins, so I guess I do have to think about it now. In fact I’ve just put a wee blob of antimicrobial nasal cream up each nostril – odd sensation, a bit like having a cold, makes me want to blow my nose or wipe it, but I guess the idea is that it stays in there so I’ll refrain for now. Only another 3 times today and only another 6 days.

A couple of days ago, I followed a link on another myeloma blog to an interview with an American myeloma doctor at the American Society of Clinical Oncology conference earlier this month: Interview with Dr J Berenson. He seems to give a lot of weight to patients’ quality of life, not just to extending it, i.e. survival and remission rates. It makes for quite interesting listening, particularly the bit where he is asked about stem cell transplants (around the 9 minute mark)…

As you might imagine, it surprised me to hear a doctor saying he was not in favour of transplants. Up to now, I have willingly and trustingly gone along with what the doctors have prescribed. I have written about my feeling of surrender to so many things as part of this experience. In many ways it has been a relief to just let go and follow instructions.

But now I am questioning… After watching the video, I sent my consultants an email asking whether having the transplant is the best possible option. I have asked them to explain the pros and cons of SCT and why they think I should go ahead with it.

I really don’t want to be in a position of having to make such a crucial decision. I’m no expert and never wanted to be. Actually when I was about 10, I did think I wanted to be a doctor… But seriously, I really don’t know enough and much prefer surrendering to expert opinion than having to take such a leap of faith all by myself, for myself. It’s funny that only yesterday I was jokingly chastising a young friend about taking personal responsibility. Now the shoe may be well and truly on my own foot and I heartily wish the decision was just a matter of setting an alarm clock to wake up in time for school.

I’m hoping they’ll persuade me with logic and medical data that a transplant is the best thing to do, as I’m kinda ready, in a scared kinda way, to go through with it. If they decide against it, I’ll be thrown, but even worse is if they leave it to me to decide.

Thinking about this a bit more, I am already in that position: I do have a choice, I always have a choice. I don’t need an American doctor’s opinion for me to decide not to have the transplant. So, I guess I have already decided to go ahead.

I went to T’ai Chi again today and managed the whole session without sitting down or feeling faint. But I could feel that I wasn’t nearly as calm and centred as usual. I was physically and mentally all over the place during our initial warm-up Qigong exercises – it took me ages to get into the right head space, breathing and relaxed rhythm; I even cried while I was doing them. Now that I’m facing treatment again, I seem to be back to crying again on a daily basis.

I’ve been getting a lot of very positive feedback about my writing, with people suggesting that I could write professionally, so I decided to explore it a bit further. I’ve borrowed books about freelance writing from the library, which I’m slowly reading. I planned to go to a local writing group this evening, but somehow I completely forgot to go… Another “all-over-the-place” occurrence.

It’s Monday night now and tomorrow’s my last day before it all begins… and the last day for the doctors to reply to my email. I had a question about pain medication, so I called the nurse and left a message asking one of them to call me back and I also mentioned the email – just in case.

I’d like to do something special tomorrow but can’t think just now of anything to do/anywhere to go. And I can’t seem to write… at least not in any way that makes sense or flows – a bit like my Qigong exercises – out of sync somehow. I guess it’s probably time for sleep and try again tomorrow.

Final note, I have finally completed writing/editing this on Thursday night in hospital. I had to use the antimicrobial wash on my hair on the day they fitted the Hickman line (yesterday – post to follow) and although not Vidal Sassoon, I’ve been impressed with how it’s made my hair feel/look considering it’s not designed to be a beauty product. I am also aware of how much more vain I am than I thought or than I used to be. LOL!

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7 Responses to The backwardness of writing

  1. Lesley Towl says:

    Hi Jet, wishing you all the best for your treatment, I will be thinking of you, oh yes and reading your blog…:)
    Lesley (Towl) xxxxxxxxxxx


  2. Denise says:

    Hi, I just saw one of your comments on another blog and had to write.

    I’m sure you know A LOT more about vitamins and alternative supplements than I, but please don’t take too much vitamin C. My husband’s doc has treated MM for over 20 years and is known internationally, being a key researcher and clinical trial guy.

    He told us that vitamin C can counteract certain chemos used in MM treatment(I think Revlimid is one he mentioned) just like the green tea/Velcade thing. He thinks patients should not take more than a daily multi-vitamin supplement would provide.

    Also, Dr. D, another myeloma specialist and co-founder of the IMF, did a test with MM cells in a test tube and those that were exposed to vit. C, multiplied faster than those that were not. I have read that if you take too many anti-oxidants, you protect your good cells but also your bad cells from being damaged and that is exactly how many chemos work, by damaging the DNA in the cancer cell.

    Sorry for butting in, but didn’t know if you were aware of these things or not. Will be catching up on your story now and staying tuned. Stay well.



    • Hi Denise

      Thank you for “butting in”. Useful information is always welcome. We’re all wandering around in the dark somewhat with this disease. I actually stopped taking any supplements when I stopped my main medication, as I wanted to forget for a while that I was an ill person. So, when I received the first blast of serious chemo (IV cyclophosphamide prior to stem cell collection) on Thursday, I wasn’t taking any Vitamin C. After your post, I may well discontinue taking it anyway, or at least have a conversation with my consultant about it.

      Thank you again and good luck to your husband.


      • feresaknit says:

        And my tuppence worth on Vit C – I read an abstract that said it can inhibit Velcade if taken on the day of infusion but only if taken as a supplement – natural source is fine.

        Good luck with the SCT! ;D


  3. pauline selston says:

    Thanks for the post, it was very good. I do feel for you, and doing praying type things with you in mind, I am so proud of you and your positive approach to having cancer. I feel sure you will have a good remission period as you are so full of life and enjoy friends and passtimes so much. You don’t need to read up on how to write, you can and do already, and what you have to say is very important and of interest. Hope you get over the treatment soon, and maybe I will see you at WIT, Claire is comong too. Take care, much love Pauline xxxx


  4. Pingback: Hickman line insertion (maybe not for the squeamish) | jet black living…

  5. Snip says:

    Wow. Your “questioning” totally resonates. I hit that wall this week as well (blogged it). I wonder if that’s a part of the whole process we’re on?

    I’m commenting well back of where you are in the blog atm… I hope today finds you strong!


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