Butterfly On a Bush

A few days ago on a bright and breezy day I was pegging out washing on the line when I saw from behind one of my T shirts the most beautiful peacock butterfly land on the mauve flower head of a buddleia bush.  It was struggling to stay on the flower because of the gusts of wind blowing it around and it was flapping its wings to try and stabilise itself. I ran back into the house to get my camera and hoped it would still be there when I got back. It was and I managed to take a couple of shots of it.  It was clinging on resolutely, occasionally fluttering off unable to stay on but kept coming back to land.  The fragility of the butterfly’s situation reminded me of my own recently as I have been desperately holding on waiting for treatment to start, both emotionally and physically.

P1020593 (2) P1020592 (2)

Since my post the Myeloma Trilogy, I have completed my first cycle of treatment. The Onyx trial finally opened on 9 August, I was the first patient and my trial tests really were whisked off to a lab in Paris (which spookily was my fantasy involving Lizbeth Salander in the Myeloma Trilogy post) and I was so hoping to be randomised to the new drug, Carfilzomib but there was only a 50/50 chance.  Just my luck I got the old drug, Velcade, which I could have started off trial two months ago off trial before I starting feeling the ill effects of having active myeloma. I was devastated and inconsolable, the poor trial nurse who broke the news to me didn’t know what to say and then had to perform a bone marrow biopsy on me!  At this point in time, it wasn’t that I wanted the new drug because I thought it would be a more effective treatment, it was because I had waited all this time for the trial to open to the detriment of my health when I could have started the old drug off trial before that happened.

Oh well, I have become resigned to it now like many other things I have become resigned to over the course of my journey with Myeloma, the loss of control is probably one of the hardest issues to deal with. The second cycle starts tomorrow and I hope that after two cycles there will be a significant reduction in my kappa light chains. I have my treatment schedule now but plans seem impossible as it is unpredictable how I am going to feel or what I can do on a day to day basis. A holiday in Italy has been cancelled as well as a tennis holiday in Greece at the end of this month so I am feeling rather sorry for myself. My self pity has been deepened by the excrutiating shoulder and arm pain I have at the moment caused by a trapped nerve in my neck which may or may not be related to myeloma or the treatment. I will be having an MRI scan to see what is going on soon I hope.

However I have managed to do some more enjoyable things in between hospital visits and prior to my trapped nerve such as canoeing down the river wye with some friends from Kerne Bridge to Symonds Yat in a 3 person kayak which was lovely. Oh and did I mention that I managed to do the bike section in the Salford Triathlon two weeks ago?? It was hard going but I took it easy and let go of my natural competitive inclinations and “allowed” everyone else to overtake me. My team mates did brilliantly too and at the end I felt overwhelming relief, firstly because I had been able to do it and secondly because it was all over now and I didn’t have to stress about it anymore. Action photos below, the small one of me coming off the bridge I really like but I cant improve on the quality or size without buying it as it was taken by a commercial photographer. I certainly look the part, who would know that I was week one into chemotherapy treatment and that earlier that morning I had struggled to get up the stairs to the registration area for the triathlon due to my shortness of breath!

wendy canoe  SALF4328 P1020608 (2)

7 Comments

Filed under Cancer, chemotherapy treatment, Health, Multiple Myeloma, Myeloma, Relapse, Uncategorized

7 responses to “Butterfly On a Bush

  1. Catherine Butler

    Reading your blog whilst at your house watching Man U v Liverpool. Well done again (and again and again) for your heroic triathlon effort but also on your incredible ability to pick yourself up after what I know was a terrible disappointment. As I sit here after a lovely lunch drinking your tea no-one would guess your situation. Seems as though your only concerns are whether Man U will win and the incredible salaries of footballers!

  2. terry

    Hi Wendy Well done on the bike ride. I really enjoy reading your posts, they are so descriptive, and being blind, your style really brings them to life. Just about to start my second cycle of Velcade following my relapse earlier this year. Similar to yourself, I was about to start a trial treatment, but the MM came back to hard and played havoc with my blood, so was ruled out. Keep up the writing when able. Take care, Terry xx

    _____

    • Hi Terry, thanks for your nice comments about my blog, hope you are doing ok. I start my second cycle of Velcade tomorrow so we must be pretty much on the same schedule.
      Best wishes
      Wendy x

  3. Hi Wendy,
    Just last night, I was thinking about you and wondering if you had been able to start treatment. I told myself I would send you a message today to see if you had and, lo and behold, here was your new post when I logged onto FB! I can understand your disappointment of waiting and waiting and then getting Velcade instead of the new drug for the trial. One thing to keep in mind is Velcade has been a very good drug and had a lot of success. I have been back on it since about February and it had reversed the upward trend of my lambda light chains until I had a 4 week break from treatment due to travel and a crashed WBC. I have just finished two complete cycles and started a new one this week. I am awaiting my light chain results to see if they are back on a downward trend. My fingers are crossed……I am wishing all the best for you as continue with your treatment and I expect to hear that your kappa light chains are reversing their upward trend soon. Sending hugs across the miles…..
    Carole Leigh

  4. Brenda Cooper

    Hi Wendy,
    Hope things are going in the right direction for you. As you have not posted in awhile I am wondering how you are doing?
    Stay strong. I, too, enjoy your writing…you are so creative!
    Brenda

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