Guess where I was today…? Barts, of course, I rarely venture beyond my home or Barts at the moment. Today, I had a routine set of bloods as well as my first chimera test (assess how much DNA in my blood is Superman and how much is me) I’m not entirely sure when I will receive the results, I’m presuming when I’m in clinic next week. I also had my Hickman Line removed!! To remove the Hickman they had to inject anaesthetic into the breast tissue which was somewhat painful, once the area was numb they tugged at the Hickman to pull it out. Sometimes the tissue has grown around the line, if that is the case the doctor has no choice other than to assist removal by making an incision. Thankfully, a few good tugs and the line came out without the need for a scalpel. I won’t lie it wasn’t a pleasant sensation but I’ve been through worse over the past seven months. At the moment the wound is very sore, that said I am over the moon the line has been removed. Admittedly it was wonderful for having daily bloods, receiving drugs etc. but I never got used to a tube coming out of me. Also, when I showered, I showered with a reminder of cancer, when I dressed I preferred to hide it therefore once again cancer was dictating a daily part of my life and so on.
Naturally, most people are asking how wonderful it is to be out of hospital. I don’t like hospitals even if these days I appear really comfortable with Barts, even so being away from Barts is strange after spending the vast majority the last seven months there. I can only describe it as having a foot in both worlds consequently I’m not a fully-fledged member of either.
I am now an outpatient which means for me at this stage in my post-transplant progress I frequent the hospital on average two to three times per week. By the average person’s standards this is a heavy commitment, unsurprisingly when I’m at the hospital without fail I bump into and catch up with other patients.
Outside of my hospital commitment to a certain degree I’m fairly house bound due to the vulnerability of my developing immune system. I have lost my immunity which I acquired throughout my life such as childhood vaccines. For example I was invited to go to the theatre at the end of November, sadly I had to turn the invite down because a theatre is packed full of people sitting in extremely close proximity and I certainly won’t have received any of the childhood vaccines etc. by then. Every invite requires a degree of risk calculation before making a decision.
I also have a number of significant decisions to make now that I am an outpatient. How long before I return to work? What is best for my health? How do I continue to pay the mortgage etc.? Just when I feel that I am kicking out the tentacles of cancer within my life, I discover another tentacle needs to be dealt with. Over all I’m definitely eradicating more than I’m uncovering.
My life is still extremely centred and involved with blood cancer, which isn’t ordinary and I suspect I will always have an involvement in that ‘world’. Stepping away from that environment into a more normal life is difficult to rationalise at times, for example hearing and seeing frivolity or listening to people moan about puerile things whilst on the other hand you are accustomed to daily discussions about the harsh reality of your potential death and that of the patients around you. It grieves me to say this but I suspect a few of the patients who have buoyed me up and who in turn I’ve supported may well pass away as a result of their blood cancer. I have never before encountered issues in life of such gravitas and definitely not on the scale I have recently. What I have been through and witnessed has and still is altering me as a person; my perceptions, viewpoints, what’s important etc. Therefore slipping into normality is not realistic, for me it’s more about adjusting to a new ordinary whilst ensuring I take on board the changes within me. Already I feel some ‘doors’ are slowly closing from the life I lead seven months ago. This isn’t necessarily a bad thing but in certain instances it’s sad, the silver lining is that I’m able see new ‘doors’ are opening.
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