The real cancer battle
My Allograft 2018/19 – 18. 10th March 2019
By Andy Burrows, 10 March 2019
Not much change
Every morning I see my pale, colourless, hairless reflection in the mirror, and I feel slightly uncomfortable.
The weight I’ve lost since the end of January is obvious – 12kg (26 lb / 2 stone) in six weeks (thankfully I was more than that much overweight before I went into hospital!).
And the fatigue is tiring.
I have to sit and get my breath back after a shower before I can get dressed. Then after I get downstairs. Then after doing anything. Every time I stand up, I have to steady myself.
I had a dream last night that I was walking briskly through a railway station – it was the abnormal feeling of normality that struck me. To do something normal that I would struggle to do at the moment… it just feels so far away.
Coming home from hospital was great. But really, I just feel the same in a different location. In fact, I feel worse because there is more space to get around in at home.
My bowels are still almost the same. I’m still not really eating much at all.
I think there’s a psychological association of feeling ill with being in hospital. So, subconsciously, however much you can prepare for it, it’s still perturbing to find that coming home isn’t associated with feeling better!
And I’m counting off days. Surely, after eight days there must feel like some improvement? Nah!
I’m not saying this for sympathy. I just want to paint a realistic picture for those who read this in preparation for their own allograft in the future.
A test of endurance
But I will say that this is where mental strength and positivity is mainly put to the test.
The pain of a bone marrow biopsy, the shivers of the first Campath infusion, the few days of vomiting, are all the kinds of things that happen, they last a short time, and then they’ve passed, and your smile comes back.
But that smile can get steadily eroded by the daily grind of waking up and feeling no better than the day before, or the day before that, or the week before that.
I feel I spend most of my time on the sofa, reading. I have now finished the entire Harry Potter series! But I don’t feel much like doing anything else, not even Supercharged Finance blogging and marketing. I’m not hugely motivated for anything.
And I feel mildly stressed about not being able to eat, when everyone is telling me I should be trying to eat more. The truth is that most food tastes like dirty dish water or like sucking on a damp cloth. I’m not being wimpy, I just can’t stand it.
The real cancer battle
And it struck me that this is the essence of a cancer battle.
It’s not so much my battle against cancer. I’ve always felt a little weird about talking like, “I’m going to woop cancer’s ass!” It’s not like I have a choice. And I feel more like I’m the battleground, rather than the liberating army! The medical professionals are the ones waging the war, and they’re taking up a battle with cancer in my body using their chemical and biological weapons(!).
No, my battle is the battle for hope and joy, positivity and perseverance. My enemies, as in any period of life really, are despondency, sadness, disappointment, depression, fear, anxiety, and such like.
And as usual, my temporal hope comes from seeing that many many stem cell transplant patients make a full recovery eventually.
My temporal joy comes from opening my eyes, and seeing the beauty of my family, our gorgeous dogs, the beauty of the sky… the list of beautiful things that enrich my life is endless every single day.
My deeper hope comes from the knowledge of God’s ultimate promises, one of which is that, “He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, now pain any more…” (Revelation 21:4)
My deeper joy comes from knowing the love of the One who will bring that about, through the loving Saviour, Jesus Christ.
Don’t miss my future blog posts
If you don’t want to miss any of my blog posts, then I have got a mailing list that will automatically notify all subscribers of new blog posts. It’s more reliable than Facebook, and I recommend it if you want to see the posts as soon as they come out. So, if you definitely want to see everything I post, subscribe on the mailing list. You’ll be able to unsubscribe at any time and I promise I won’t be offended!!
Thanks for being interested in my journey. And always feel free to interact and let me know your thoughts.
God bless!
What is a stem cell transplant?
If you want to get more insight into what a stem cell transplant is and how it works, the Anthony Nolan Trust has some really good information in its website. You can find that here: https://www.anthonynolan.org/patients-and-families/understanding-stem-cell-transplants
My 2015 transplant was an autologous stem cell transplant (a.k.a. an autograft). In 2019 I’m having an allogeneic VUD (voluntary unrelated donor) stem cell transplant (a.k.a. an allograft).
Becoming a stem cell donor
By the way, if you want to find out more about being a stem cell donor (please!), here are a few links (UK-based mainly):
(Stem cell and bone marrow donors are amazingly kind people who offer to sacrifice their time and endure some mild discomfort to help save the lives of people like me who have a type of blood cancer – lymphoma, myeloma or leukaemia.)
Ok. Now we know better what to pray for. So thankyou for that my dear. Who can cheer the heart like Jesus, by His presence all divine? Love you. Auntie Jen. Xx
Eating when nothing tastes of anything is unbelievably hard, and hard for other people to understand. After all, put the food in , chew, swallow – how hard can it be? I had the same experience a year ago when I was sick and being treated, and used to say it was like being asked to eat cardboard and wallpaper paste – you might manage a little, but only a little, and very very slowly. With me, they put a stoma in my stomach and I was fed overnight from a big bottle of gloop. Not very lovely, but it was a blessed relief as before that, I was starving to death. Nutrition is so important, and my mood and attitude changed almost overnight. Even with the stoma (which I kept for a few months), I still lost 40 pounds. I’m surprised you haven’t got something similar.
Hang in there, Andy…
It’s really good to know there is someone who can sympathise with how hard it is!
I think they expected me to be a little better by now, and I’m topping up with Fortijuce as well, so I’m not disastrously low on calories or nutrition. But I know I can’t go on like this for a long time.