The Set Back

Today I have had a set back. It is strange, because I suspected as much. Maybe people are right, and a positive mental attitude can encourage positive results. My outlook however, had been somewhat lowered after my last appointment with my doctor.

I wish I could bottle the feeling I had when I found out that I had a 35% reduction in my paraprotein level after my first cycle. I was genuinely happy and felt secure in the knowledge that my treatment was working. I all but put out the bunting. This was a reduction from 40 to 26. I felt so positive and truly believed that this treatment, my trial was going in the right direction. Today I have had my results from the end of cycle two. I was expecting a reduction, but a modest one. I wanted to hit a total 50% reduction from my first 6 weeks of treatment, but what actually happened was that my paraprotein level has increased. Instead of sitting on a 35% reduction, I am now on a 30% reduction. The bunting has gone soggy.

A set back.

I have had medical people trying to placate me and say that this is just a ‘blip’, but I don’t want a blip. I don’t want any delays or hiccups or anything but the most noticeable improvement when it comes to my treatment and my health. I also do not find it comforting to hear that ‘most people respond well to Velcade’. How does this help me, when it would appear that I am not? This also seems like changing goal posts as I have previously been told that the trial is 50% successful. How does this translate to most people? Half and half. Why do I appear to be in the losing team?

I am impatient, I know that and it is a weakness. I want to get better now. Or if I cannot get better right now, I want a timescale of when I am going to get better. My life is on hold and every set back delays my life.

Maybe it is only a blip and next month I will have a huge reduction in my paraprotein level. Who knows? The medical team seem to be telling me that they don’t, but I secretly get the impression that they do and it makes me feel like the rug has been pulled from under my feet. Is talk of alternative treatments comforting or not comforting? Right now, I cannot access.

I guess, if at first you don’t succeed, try, try again. And then again. Keep going until it has gone. I have said this from the very beginning.

Prior to getting my paraprotein results this morning, I was interviewed for a BBC documentary by the Secretary of State for Health about cancer treatment and my personal experience. I am not going to be modest about this, I was excited and pleased to have been asked to participate. It is not the first time I have been asked to partake in cancer awareness discussions, and there are times when I may actively seek this sort of chitter chatter. This all links to my blog, and helps me make sense of why this is happening and hopefully help others make sense of why this is happening to them. That is my hope.

Right now though, as I sit on the second floor of Macmillan building holding back the tears until I get home, waiting to receive a drug that may or may not be working, I can honestly say that I would give up the promotion, the attention and the blog, if I could get that guarantee that I was getting better. That I was going to get better.

This is impossible.

This too shall pass.

EJB x

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4 thoughts on “The Set Back

  1. Annette says:

    Annette and I send our love and big hugs. Nothing is this kind of treatment is guaranteed
    sometimes you have to go backwards to go forwards. My sister Sally is suffering from breast cancer and now wears a wig she has been a brick but has had some bad days too. We are very proud of you and your blog is just amazing a true inspiration as indeed are you.
    lots of love and kisses Alison and Annette xx

  2. mike says:

    Dear ejb,
    I can understand your devastation but my mathematics suggest your latest result was 28? compared with 26 last month ? I ve had my M protein measured over the last 4 years initally at two different hospitals and the results fluctuate from 18 to 26. some of that fluctuation is due the actual method (measuring the height of a spike on a graph ).
    so it could well be there has been no change rather than a true increase . However I can see that may be little consolation but someone on the myeloma uk website may have experienced a similiar event but still had a good outcome ?
    What would I do in your situation ? get a repeat blood test next week and see what that shows . If you are not responding to Velcade /adriamycin /dex there are other agents (at least 6) available ,especially where you are .
    I hope this helps
    mike

  3. Sending you positive vibes.

  4. Lorna says:

    Oh sweetie (I feel I am able to call you sweetie as I am mathematically old enough to be your mom), I wish I was able togive you a hug. I always wanted someone to hug me when the news wasn’t as good as I had hoped.

    Massive virtual hug sent. (Oh and I’m looking forward to seeing you on the telly. 🙂 )

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