Nothing to say?

I have been struggling to write a new post since Butterfly on a Bush written just after I started treatment. I knew that I would find it difficult whilst on treatment but I am trying to figure out why that is. I don’t want to stress about it but all the same I would like to post an update.

So far I have had a really good response to the treatment which has brought my kappa light chains down from nearly 3000 to 188 at the end of the third cycle. They did actually go down to 50 but went back up to 180 at my last test result.  Of course, I am hugely relieved that the treatment is working to bring the myeloma under control and I am physically much better than I was before I started treatment, as the symptoms I was having caused by myeloma being active have disappeared. However the rise concerns me, is it just a blip, a response to a viral infection or an indication that my disease has already become resistant to velcade? The answer will be determined by the next test result, as usual, it is wait and see.

I started my blog a few months after my stem cell transplant. My blog was intended to be about my reaction to living with a life shortening and incurable blood cancer and how I deal with that rather than the nitty gritty of treatment, side effects and the technical aspects of my disease although you all know about my kappa light chains and frothy urine! I lacked the composure and ability to reflect on my emotional journey during my initial treatment leading to the stem cell transplant. I was just dealing with it the shock and trauma of it all and was very depressed.

Since starting treatment for relapse, I find I am more composed but with little to say about how I feel about this period. From January to August, I have been relapsing and to use a cliche, it has been a roller coaster of a journey, the inaccurate test results, whether I could go to India, whether I could do the triathlon, what treatment, waiting for the trial, my light chains rapidly rising making me unwell with myeloma. I was in a highly charged emotional state during this period, it was exciting in a perverse way but also draining and stressful. Now that I have actually started treatment I have settled into a rather dull routine of  Monday and Thursday  visits to the Haematology day unit for the first two weeks of each cycle to receive an injection of velcade into my stomach and the third week off steroids and velcade with a clinic appointment at the end of each cycle to review my progress and side effects. I fit in going to work in between these appointments if I feel up to it.

Now that I have a treatment schedule and have entered the myeloma world again, I am less stressed than I was, flatter and calmer  but am struggling to to accept the way my life is right now and so gloomy about the future, feeling increasingly disconnected from the “normal” world that I was able to be part of during my remission. I have lost confidence, feel edgy and slightly uncomfortable in the normal world, different to everyone else. I think I am suffering from post traumatic relapse disorder, if there is such a condition, there is now I have just invented it! I have almost reverted to the mental state I was in when first diagnosed, like why me, it’s not fair, my life is over etc etc. I thought I had come to terms with all of that. Added to that pot of misery is the disappointment of relapsing relatively soon after my stem cell transplant (some people get years, why not me?) and the question of how long I can survive has lead me to becoming increasingly obsessed with researching the net on latest treatments for myeloma, studies and statistics as if knowledge is power. I am not sure it is helping me as I have no control over my disease progression, only over how I cope with it emotionally.

I am as always trying to live in the moment, and there have been some good ones, I went to the beautiful island of Majorca for a few days to visit some friends and swam and sunbathed, went to the Yorkshire Dales to see some friends, walked along the lovely river and watched a local inter village cricket tournament, a now en route to Cornwall for a few days. I feel a certain degree of pressure to plan nice things in my week off treatment but just because I am off treatment doesn’t mean that all the side effects magically disappear, the fatigue stays and the effects of steroid withdrawal such as mood swings, irritability, paranoia, depression and shakiness kick in.  Sometimes I prefer just to be home alone watching the blackbirds eat the little grapes off my vine!


P1020649 P1020664 P1020661 P1020646

So in summary, it seems for someone with nothing to say, I have found quite a lot to say.

“These are the days that must happen to you.”
― Walt Whitman


Filed under Cancer, Health, Multiple Myeloma, Myeloma, Relapse, Remission, Stem cell transplant

8 responses to “Nothing to say?

  1. Willow

    Ditto, nothing to say, except I think of you often, love you loads, and hoping i’ll see you sometime soon. Willow xxx

  2. Post traumatic relapse disorder, I like that name. I must be in the pre traumatic relapse mode. I had my SCT in July, and am now (and have been) selling off personal things in my pre-estate sale, and finishing projects around home so my wife won’t need to have them done when I’m gone. I’m not being fatalistic, the things I’m selling and the projects I’m finishing are all things I should do, need to do, even if I have many years ahead of me. It’s just that now, in this pre relapse mode, I can see that I need to act while I am physically and mentally able. You did find something to say, and you have a perfect place to say it.

  3. Brenda Cooper

    Wendy, your insight and honesty are such a help to those of us who inhabit the World of Myeloma. Post Traumatic Relapse Disorder- you have a way with words girl! It is now permanently in my lexicon. Keeping my fingers crossed your light chains level off and STAY THERE!

  4. terry

    Hi Wendy Thanks for the latest blog entry. You have written down pretty much how I feel, and probably many other MM folk. Now having finished the third cycle, with one more to go, I’m nearly there, well, when I say nearly there, I obviously just mean nearly at the end of this particular dose of toxins, and goodness, it’s messing with the head somewhat. Part of me doesn’t want to go through the last cycle, due to the heady effects of the Velcade. The “stoned” feeling used to only last a couple of days following the injection of velcade, but now that I’ve finished the third cycle, the stoned and sedation feeling is there pretty much all week. I’m finding it difficult to function, and even harder this last couple of weeks with the kids being off for half-term. My pp’s are now below ten, so I intend to ask my consultant if it is feasible to go on to a maintenance therapy now, instead of having the last cycle, as it’s really messing with my moods, paranoia, feeling down, stoned, etc etc. Does this crap ever end? Where are those supposed cures that have previously been mentioned? lol. Keep posting, and thanks again. Terry


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