Now for the tricky bit. The donor cells are in there, and they should find their way into the bone marrow where they will mature into the various blood lines: red cells, white cells and platelets. Keeping it to the simple metaphor of planting a new lawn, the conditioning has taken out all of the weeds and the old grass, removed rocks, and prepared the soil for the seeds. Now the seeds are in, the aim is to protect them while they root. So we need to keep the birds from eating the new shoots, keep the soil watered, and avoid new weeds, while making sure the kids don’t trample over the new lawn. Simple!
So now I am at my most vulnerable to infection. I have no effective immune system, and so I am being given various drugs to avoid infection: antibiotics, antivirals and antifungals. Even the smallest infection could be a big problem. Hence my room is kept incredibly clean, and all the staff are wearing PPE when they come near me. At the same time, I am having anti-rejection drugs to stop the donor cells being eaten by any of my remaining immune cells while they engraft.
Now we wait two or three weeks for the green shoots, when neutrophils should start to show up – the white cells that are the first line of defence.
How they worked all this out, beggars belief. As well as some good science, there must have been years of trial and error to get the protocol right.
Day +1
I slept quite well, but not long. Infusions started at 5, and as I usually get up about 6 it was hard then to get back to sleep. I was quite chipper this morning, but after my daughter left I slept solidly for nearly three hours.
The consultant this morning was very encouraging. The blip I had on day -2 was the chemo actually working and the temperature spike was not caused by an infection. The donor cells were plentiful and fresh, and so have a better chance of taking. When my neutrophils stabilise above 1 and if there are no other concerns then I can go home and just come to the day clinic.
The staff continue to be excellent and supportive. I’m getting to know them now and the conversations are two way. It is helpful to take an interest in others – it’s not all about me.
The poo concerns have flipped – I have a daily dialogue about my bowel movements. Now I do have diarrhoea. Hopefully it will clear up. I’m also retaining fluid, with some puffiness in feet, ankles, wrists and fingers, so they will give me some water tablets.
Overall, I am much chirpier today. Artemis is making its journey back to Earthly life.
Day +2
Skip this section if discussion of bodily fluids is a problem for you.
So, the diarrhoea stopped in the middle of the night. Probably because they had stopped the intravenous antibiotics. That is a huge relief.
I slept well, but over the day I got edgier. My ankles ,wrists and legs got quite puffy. Over the last few days I have put on a kilo a day, which is all fluid. Given that I am having two litres of fluid intravenously, plus what I drink, that is no great surprise. But that can’t continue. So an intravenous diuretic was administered.
What goes up must come down. Alas, a lot faster. I have to keep a fluid chart, and now I haven’t enough slots on the fluid chart on the out side. At this rate, I will lose all the four or so litres in four hours. But as I do, I feel much better, and my wee has gone from flourescent orange back to a healthy straw.
Normal service hopefully will return tomorrow.
Day +3
Overnight I started with some chest pains.I got a fulll check over: ECG and X-Ray, and it turned out to be a chest infection. So I am on strong intravenous antibiotics. This wiped me out and I slept most of the day.
Day +4
I got up about 3.00 having slept for about 20 hours and sat in a chair. Then migrated back to the bed about mid morning.
I spoke to the doctor late afternoon, and he gave me a pep talk: eat more, drink more and move more and you will be out of here much faster. Yes sir. He said this is the worst patch so take heart that in a few days things will improve.
Day +5 and +6
These two days have been the most challenging so far. I’ve needed quite a lot of help. The biggest immediate challenge is getting to the toilet in time. The second is low energy and breathlessness.
As someone who has been fiercely independent, letting go and accepting help graciously is quite an adjustment. I’ve supported others through imilar experiences, but that does not make it easier.
I’m retaining a lot of fluid which is part of the problem. I had a liver scan yesterday.It all goes back to this fine balancing act. Drugs to keep me safe.Drugs to deal with other drugs. I’m on 9 infusions a day and well into double figures on oral medications.
Day +7
A milestone today, at least in terms of days. Who knows how quickly I will start to recover. But I’m sat up in a chair.
By all accounts this is the nadir in terms of discomfort. Let’s hope.
Day +8
Although I may not feel it, this is when there should be some early signs of engraftment. I’m still very tired. Fortunately my nosebleed has stopped. I was given an injection today to stimulate neutrophil production. My appetite is still low. I’m carrying a lot of fluid.The next few days willl be the most challenging.
Psychologically it is good to know that, all things allowing, I should be halfway through my stay here. Fingers and toes crossed.
________________
Is there a degree you can take in helplessness? I think I would get straight A grades right now.
I guess I have given up struggling, not in a bad way, but accepting I need to fully depend on others for a while.
So far i have been resisting that dependency. now i just ask. Energy is at its lowest but appetite is returning.
Consultant was ecouraging today. I should see improvements over the next few days
Day +9
So,, some good news, but too early to get excited. My neutrophil count is 0.01. Don’t get excited – it is an early sign of engraftment said the doctor. It needs to get to 0.5 before discharge, and 3.00 for a full recovery. I will take small victories. Fingers and toes crossed.
Other highlight of the day, a trip off ward for a liver scan.
I’ll stop there.
Day + 10
I slept through the night. Apart from visits to the loo.
Just heard my neutrophils are 0.31. Engraftment is taking place.
Day + 11
neutrophils 2.8
In normal range!!!!
Day +12
Talking today about a discharge date in16 days when I finish a particular round of drugs.
Neutrophils today 6.11! They’ve stopped the drug stimulating them now so they should settle to their natural normal level about 3.00.
Platelets 26, up from 21. The trigger level for infusion is 20. Fingers crossed for a steady increase, and the weekly infusion I was on will no longer be needed.
Hemoglobin 82 for two days. This is above transfusion level of 80 which I have been on for months and still needed weekly transfusions of red cells.
I’m sleeping about 12 hours a day. I tire very quickly. but the brain fog is going very slowly.
Day +13
Neutrophils 5.4
Platelets 36
Hemoglobin 80
All very encouraging, especially platelets.
Much more energy today, but then crashed in the evening.
Day +14
This willl be the last entry in this section. The graft has taken. I will now move on to the preparation for home.
It will also be the last regular numbers update unless there is a significant milestone to reprt: Neutrophils 3.5, Platelets 54, Hemoglobin 76. The latter is stable, and as red cells take time to mature they hopefully will pick up soon.
I’m starting to get a little more energty back, but still tire very quickly and easily.
I can now go, out of my room for a short walk with a mask, and I mean short. 200m and i am whacked. But small steps at first.
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