On the turn
My Allograft 2018/19 – 14. 20th February 2019
By Andy Burrows, 20 February 2019
So, no further deterioration. And some encouraging signs of the start of a slow bounce back.
I haven’t been sick for a few days.
And whilst I have a syringe driver pump attached to me 24/7, delivering anti-sickness medication, I have had to have a top up most afternoons to deal with nausea. And yesterday was the first time I managed without that top up.
I won’t talk too much about diarrhoea. It’s enough to say that it’s gone from being more than I’ve ever seen in my life two nights ago; now it’s a tiny amount.
That’s a good sign that my gut is healing up.
And I managed to have three little “fortijuce” drinks yesterday, which are high calorie, full nutrition drinks.
The lines are busy
I’m hoping that means that I can soon stop being “fed” via a big bag of watery nutrients infused via my Hickman line.
There are a couple of reasons it’s a pain being “fed” through the line. Firstly, the first bag was infused over 48 hours. That means I’m constantly attached to the drip, so I have to take the drip stand everywhere with me, I can’t shower, and it’s just very restrictive.
The other thing is that my Hickman line has three lumens (i.e. the line coming out of my chest splits into three – see my video about PICC and Hickman lines if you are interested in seeing what this looks like). If one of them is constantly attached to food, and another is constantly connected to the syringe driver pump, then that only leaves one for the main drug infusions.
And believe it or not, there are a lot of those drug infusions! On top of the main infusions, because of stomach sensitivity they give IV forms of the drugs one would normally take as pills. So, the nurses are in and out of the room all through the day and night changing the IV. And with only one lumen they can use, and some of the drugs needing to be carefully timed, it can get a little difficult.
In fact, as I was writing this, the nurse came in and asked me if I’d mind having a cannula so they can use another vein! I immediately said an emphatic, “no!” I’m not adding the pain of a needle to all my other pains. Cannulas are one of my pet hates!
The problem they were trying to get around with that was that the doctors had just prescribed me some frusemide. That’s the drug that makes you pee, so that you don’t retain too much fluid. Because I am retaining a bit of fluid, due to the bag of “feed” and all the other infusions, on top of trying to drink more.
All mundane, boring stuff!
One step at a time
I’m hoping that as I improve, I can go back to having pills, get disconnected from the syringe driver pump and the “feed”. Then I’ll only be connected to the IV for a few hours a day.
I have to admit, though, that I’m conscious I may be trying to rush the recovery a little. All these things, I’m sure, will come. But perhaps not all this week!
One step at a time!
Hair and counts
I am also now at the stage of losing my hair (again). Another milestone! It’s just at the stage where I get hair all over my hands when I touch my head. And I can pull tufts out with my fingers with no pain. I would normally shave the rest off at this point, to save it getting everywhere. But I’m not sure what they do in hospital.
And – fanfare! – my neutrophil count is now above zero again. It just flickered up to 0.1 yesterday.
Neutrophils, as I’ve said before, are a type of white blood cell that are specifically designed to fight infection. Part of what makes me vulnerable to infection after chemo is that white cells are killed, including neutrophils – making me “neutropenic”. I think they class a score of 2.0 or 2.5 as normal. And I’ve been on zero for the last 10 days.
And that’s my roundup for today. Thanks for thinking of me.
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Thanks for being interested in my journey. And always feel free to interact and let me know your thoughts.
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 or leukaemia.)
Keep on going Andy you can do this & let’s hope the worst is now behind you.xx
Good you keep us up to date so we can pray more specifically. May the Lord give you peace comfort and healing.. Lots of hugs from Auntie Jen xx
Good luck Andy…I love following your story. I completed R-Chop last June for Non Hodgkin’s DLBC, stage 4. I’m still in remission, just had my 3 month check Monday. It is definitely a rollercoaster even beyond treatment. It’s always in the back of my mind, but I stay positive and reading your story helps too. Stay positive and I will be praying for you!!!!
Thank you Kathy