Not plain sailing
My Allograft 2018/19 – 9. 1st February 2019
By Andy Burrows, 1 February 2019
When I got a visit from one of the transplant consultants yesterday, I thought it was just the normal ward round. The junior doctors do the daily rounds and one of the consultants joins them once a week.
But it turned out it was a special visit to bring some bad news.
One of the boring details I forgot to mention in one of my previous posts was that as the Campath was giving me flu-like symptoms, aches, shivers, etc, I was also a little bit sniffly. So, they decided they’d better take some samples, just to make sure it wasn’t also a real virus.
The bad news was that I’d tested mildly positive for the rhinovirus – the common cold!
The most immediate implication of this was that I would have to be moved into one of the older rooms with a neutral pressure ventilation system.
I still can’t get my head around how bizarre this is. The nicer rooms, which they consider better for reducing infection risk (and so tend to go to the allograft patients), have a “positive pressure” system. This blows filtered air into the room. But where does the air from the room go? Into the corridor!
What that means is that it’s very good at keeping infection out of the room. But if there’s infection in the room (especially the airborne type), it’s going to get broadcast around the ward.
The next, and more serious implication, was that they had to decide whether my cold was coming or going. The reason this matters is that my immune system is being suppressed by the drugs I’m being given. The drug scheduled to be given on Monday (Melphalan) will wipe it out, clearing my bone marrow of the cells needed to grow white cells, including neutrophils.
That means that if I have a significant virus present when that happens, it could have very serious consequences.
So, he said, they’d have to decide whether to postpone the transplant.
I can’t say I remember much about what else has gone on. I had my fludarabine and my last dose of Campath, and didn’t suffer much with it this time thankfully. I also had to have a 12-hour infusion of phosphates (because my blood test results showed I was short of them).
But, after supper I had to pack up my things (which was difficult whilst connected to a drip!). And then I was moved to this much smaller room.
I didn’t find it easy to unpack either, to say the least. I was still connected to the drip, and there isn’t enough room to get the drip stand around the side of the bed where the only cupboard is.
And I didn’t have any choice but to unpack – I couldn’t just lie down and wait until I got disconnected – because both the infusions that were connected were going to run into the small hours of the morning.
Bit by bit I did it. Packing up and unpacking must have taken nearly 3 hours altogether.
And there’s no kettle, and no big comfy chair. So, my options are to sit/lie on the bed, sit on the edge of the bed, sit on the “waiting room” chair, or stand up. I don’t want to get bed sores, or a bad back, so I try to vary it as much as possible!
And as if that wasn’t enough, now the nurses, doctors, cleaners, visitors – basically anyone who wants to come into my little room – have to put a mask on and a plastic gown and rubber gloves. So, understandably, nurses don’t like to come and see me (though they don’t say that)! If they can get away with not “gowning up”, then they talk to me through opening the door a little bit and standing outside. The caterers get a trolley with my food on, and push it through the door, so that they don’t have to come in.
The big risk of infection
And I don’t even feel like I’ve got a cold!!! I seem to spend most of my life being sniffly for some reason. It’s just me. I sneezed once yesterday. My head is clear, and my nose and throat aren’t sore. I thought I’d know if I had a cold!
Anyway, to be fair, this has made me realise how seriously they take infection risk – and how seriously they want me to take it when I’m at home. (They don’t even want me to have visitors who have come into contact with infections and infectious diseases (chicken pox, measles, flu, colds) until they are sure they haven’t picked up the infection. So, I’ve had to ask Anna’s school if they can tell me if an outbreak occurs involving children she may come into contact with.)
Some good news
Today they did another set of tests which came back negative. Phew!
So, the consultant was happy to keep going. But I have to test negative two days in a row before they relax my restrictions… and then I may get a room upgrade!
So, if there’s anything to pray for, that would be it!
My donor started their pre-harvesting preparation – a few days of GCSF injections – today, so it would be pretty upsetting on both sides to call a halt now.
Life is rarely plain sailing
My final reflection on this is that I may have got too accustomed to “sailing through” treatment.
In 2010, 2012 and 2015/16, aside from the fact that I relapsed in less than three years, the treatment on each occasion went without major complications. So, my plan was to sail through the allograft as well, and this time leave the lymphoma behind!
It’s not working out quite like that, but I have to tell myself not to let it get me down. Just keep putting one foot in front of the other, and keep enjoying the things I can enjoy (which doesn’t include the hospital food, which is mostly horrible… but that’s another story!).
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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, 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.)
What a shame. Hope you get a nicer room back soon. Thinking of you constantly. And of course talking to The Lord about you. How wonderful to know He neither slumbers nor sleeps. So I know He’s listening when I wake in the night and bring you before Him again. Lots of love. Auntie Jen. Xxv