What Next?

Today, I have had my final dose of Velcade. This means I have had my last dose of treatment on the PADIMAC trial. It would be unfair of me to say that PADIMAC has failed me, for I have had a partial response, however I did not want a partial response. I wanted my paraprotein to go down to 0. I wanted to be able to harvest my eggs and my healthy stem cell. I want to be going back to work now. I want to have hair. Eighteen weeks and two days ago, I thought that the above would happen. Well, most of it. After my first cycle, I was sure of it. I thought that at the start of 2013, I would be better and that by now, I would be getting ready to return to work, just potentially with slightly shorter hair. I still have hair and the hair I lost is starting to grow back. It need not have bothered for I’ll be shaving it off in a month. At the time I thought my chance of having my own babies was nonexistent, which is good because I prepared myself for the worst. As it turns out, at this moment, I can still have babies; it is unlikely that I will be able to have my own babies in two months time. Thank goodness I prepared myself for the worst.

Over the last eighteen weeks, I have had six cycles of treatment involving 66 pricks of a needle, a facial hair load of steroids, chemotherapy, received a stomach full of scars and produced two buckets full of my pee as well as seven egg cups worth. In this time, I have learnt how my body will feel within in each three week cycle. Every side effect I know and I can manage them, even the horrible ones. I know when I cannot get out of bed and I know when I can. I know when I will not be able to toilet and more often than not, I know when I can. I know when I will not want to eat nor drink and I know when I will. I know when I need to speak to the Medically Trained People and I know when I don’t. Knowing all these things means I know when something is wrong, because my experience tells me so. I do not know what my future holds.

I have a rough outline of what is to come and I have a rather horrible decision to make before that. Regardless of my decision, I know that the treatment to come is going to make me feel more ill than I have ever felt before. I face at least three months of a low immune system, and during that time, until my blood count returns to normal, every sneeze, headache or frustrating stool is going to come with a waterfall of paranoia. Any immunity I have built up over my 28 years will be lost; my body will start afresh. Hopefully.

As for my future treatment and the transplant, I am terrified. I am so scared about the side effects, the chest line, transfusions, missing my flat and death. I don’t want any of it, but I know that all of it bar the latter, is necessary. It will happen. It is happening. I want to get better. Correction, I need to get better. To curb my mawkish thoughts, I have to remember one thing. I have to remember that I got this far. I got through my diagnosis and I now understand what is happening to me. I got through my eighteen weeks of treatment and everything that entailed. I have got this far with my head held high and with my personality still intact, albeit, clinging on for dear life. I did it.

And by hook or by crook, I will get through this next stage, as scary as it seems now. I have to. Every part of my treatment is a means to an end. I have said that from the start and I will have to continue to say it regularly because it is true, and because I now suffer from short term memory loss.

For now, I am going to enjoy my four weeks off of treatment. I am going to build up a bank of positivity because I know I will need it.

A means to an end.

EJB x

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3 thoughts on “What Next?

  1. Lorna says:

    This time next year Emma you will be in remission, back at work and the treatment will seem like a bad memory. A friend with myeloma said only a few days ago that an SCT is like child birth, f*****g terrible at the time but forgotten with time. May be it was just her chemo brain but Mike says the same.

    Stay positive, you’ve done brilliantly. x

  2. Lovey Beth says:

    Emma, I want to address the specific fears you have mentioned. After what you’ve just endured, I don’t think the SCT will be any worse. The central line will become your friend. Ask that it be inserted under sedation. Don’t be frightened by transfusions – I’ve had quite a few of them, and it’s no big deal. What you are envisioning is probably far worse than what will actually occur. Best wishes.

  3. Join the FB group for MM and ask questions from people who are going through or have just gone through the SCT journey you are about to embark on – they have tips for avoiding certain pains and that includes the uncle who wants to hug you just after he has sneezed in your direction – LOL!! And I will be intending a successful outcome for you in all respects… hugs!

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