The last couple of weeks have delivered a flurry of emotion.
Evelyn had a full work up of tests and scans which has shown very positive results. Her bone marrow is free of cancer cells, the pockets of neuroblastoma attached to her hips, skull and femurs have completely gone and the primary tumour is now only a fifth of its original size. Of course, we have been incredibly pleased with these figures and are overjoyed that we can take the next step in treatment.
Earlier this week we had to spend a few days in hospital whilst stem cells were collected to be stored and later transplanted back to grow into new bone marrow. The virology report showed as positive for hepatitis b. We sunk. After all of this, to be told that another complication had arisen was heartbreaking. We could not believe that such a thing had happened so requested a re-test and a consult.
The test happened and we sat with Dr G awaiting the bad news. To our astonishment, none came. It transpires that she was positive for hepatitis antibodies. One of the blood transfusions must’ve been donated by someone that is immune to the virus and as such there is no active virus in her system. Again, another happy result.
The real struggle that I am facing is inside my head. The gravity of the situation is really weighing on my mind and despite fantastic results so far, I cannot pull myself out of this downward spiral.
Every smile that Evelyn gives me provides the strength to get through another day. She truly is my entire world. All I want to do, every minute of every day is be with her. Cancer has already taken most of my close family leaving me with just my sister to guide and mentor me (which she does very well). My wife hasn’t really lost anyone close in her life so is unable to empathise. I often joke that if my life was a movie, it would receive poor reviews as it would seem too far fetched that someone can have such bad luck. The real good luck I’ve had is in finding my wife and the amazing girl that we made together.
I’m confident in saying that I’m currently at the lowest point I’ve sunk to in my entire life. Tears flow at least three times daily and I’m finding it harder to disguise this emotion. I never get upset around my princess, I don’t want her to see daddy get sad. I have some reprieve from the heartache. Whenever I wake, everything seems fine but it’s inevitable that it will return. In those moments after opening my eyes, the world is as it should be but after a few moments, sometimes minutes the hurt comes crashing back down. Almost every single day, I re-live the emotions I felt on the day of diagnosis except it seems to be getting harder.
I thought normality would help so I returned to work almost three months ago. I agreed to return on a low stress basis but it simply doesn’t help. All I want is to get home to my ladies and be able to help with basic tasks. Instead I spend all day counting down the hours before I can get out and go home. Most nights I spend at home after work, I will only see Evelyn for around an hour as she is in bed soon after my return. Some nights, I don’t even get that as she is so tired from her treatments, bedtime has to come earlier.
The face of this disease is becoming clearer day by day. It is the face of a demon that sucks the life out of everyone it touches. It is a demon that you cannot escape, only face head on. I know that I will never be able to return to the man I was before, I will forever be an altered version of myself. I’ve always had a desire to help others and develop the best in people. Presently, I feel so apathetic and simply cannot find the drive. I’m sure a doctor would diagnose me as depressed or suffering with anxiety issues but it’s something different. I am simply suffering the effects of fear and exhaustion without any visible reprive from the effects. Every morning, I put on a face that says “I’m doing ok” and “I’m staying positive” but the reality is that I’m not ok and although I’m very positive about Evelyn’s progress, I am unable to convey positivity towards trivial subjects. Some of the things I cared about six months ago now hold no value to me. I now live only for my family and would do anything to keep them happy.
Thank you for taking the time to read. This entry exists solely so that I can openly say some of the things I can’t say at home. I truly hope that you have a great day and cherish those around you.