So here I am.
Back at what will soon be the largest blood cancer centre in Europe.
The queue for the blood test today made you think the extra patients are already here!. And I suppose I only have myself to blame going on so much about how UCLH have saved my life, and how good the A and E is, not to mention the 24/7 nurse helpline for all patients and the dedicated inpatient beds in case you need them. So perhaps I should say to the rest of you: don’t come! No seriously, do. Or at least do get yourself under the care of a truly specialist hospital team. It can literally be life saving.
Anyway as the patients come, the money also flows and they are recruiting new staff to go with the new facilities.
And personally I’ve always had the mentality that if you have to wait a long time to see a consultant it probably means that when you get to see them they will not be one of those who rush you out the door without answering your questions. And they try their best to help. I do wish the admin was a bit better though and they could make the appointment times a bit more accurate!
But like all of us the appointment nerves never stop.
Just three months ago my blood test confirmed again that I had MRDU at the less than 1 in 100,000 level. So really I should have no concern that today is the day they say “it’s coming back!” That should be years away almost certainly. Tho I suppose there is the slimmest of chances that my lymphocyte count might have shot up. But since it was only 0.4 (or 400) just a few weeks ago when I last had it checked how likely is that? And I don’t have any visible node growth either.
But it will never get easier sitting in this waiting room alone waiting for those few minutes that could at lest potentially change everything.
I do have a bit of a chesty cough which started as a cold two weeks ago, but I’ve only spiked a very mild temperature a couple of times, and had only the shortest little runs of tachycardia on my watch. So even I don’t think this is bacterial at the moment (tho I’m keeping a watch on it!).
I do have some concerns about the fact it has looked like I may have been passing blood in my Faeces every now and then and due to a calprotectin positive reading I’m seeing a gastro doctor tomorrow. That perhaps surprisingly doesn’t worry me too much.
Although it does bug me that I can’t seem to get fully rid of the itchy skin or nasal allergies. But that just seems to be my lot, and not anything else that can be done at the moment.
However, really the thing that bugs me most is the thing that despite their high tech Expertise I know they won’t be able to do anything to help me with: the physical mental and emotional fatigue. This is so much better than it was but I still find a normal day at home a real struggle let alone a day in Hosptal outpatients. But I’m very grateful for the hospital transport I’m entitled to.
So here we go.
My neutrophil count is the thing I haven’t mentioned yet because I’m trying not to be concerned about it. It’s been bumping up and down randomly for the last few months. One minute a healthy 3.5 (3500) the next 0!
The theory being my body makes enough when I don’t have an infection but can’t ramp up production.
Which is it to be today? Am I crazy that my biggest concern about that right now is not the health implications of this but rather hoping I don’t have to get a prescription for GCf and therefore another wait here!
UPDATE
As expected my lymphocytes continue to be safely low. 0.42 or 420 is apparently what you might want to see after a successful CLL treatment. As most regulars will know these cells produce antibodies but to be honest most of us will not have many healthy new antibody producing lymphocytes even before treatment. So they don’t do anything except offer IVIG or SCIG but only if the IgG drops below a certain cut off (which seems to get lower by the year as rationing gets worse).
But low neutrophils potentially pose a more immediate problem. As in if you get an infection when you have low neuts you can get neutropenic sepsis which is a medical emergency. With me it seems that perhaps this viral cough has used up most of my neuts (the specialist today agrees my chest still sounds “clear” and the absence of a fever / tachycardia all point to viral at least for now).
So today’s reading is 0.41 (410) which means it’s time for more injections and so as I write this I’m still waiting for the transport having had to wait for the pharmacy.
It’s easy to get a bit complacent about low neutrophils, and I’m pretty confident they will respond well to the injection that encourages them to grow. I guess I just wish that I wasn’t still having to be concerned about this nine months after chemo.
Having said that NONE of us should ever think we are completely safe from low neuts or indeed anaemia or low platelets. All of these could potentially strike someone quite quickly even during watch and wait. Just one more reason why a fever, or feeling significantly unwell should mean an urgent assessment often in ER / A and E where they can do an urgent blood test as part of an infection screen. Of course since I have no fever and we are quite confident this is a viral infection, and that I usually respond to GCSF quite well, I have avoided the need for A and E or admission once more.
It’s a strange feature of the last two and a half years that I am actually feeling really pleased to have managed to avoid an inpatient stay actually for a whole year now! I’ve come close a couple of times. But here’s me again...saving the NHS a bit of money by being proactive together with my Doctors and nurses!
Coronavirus spreading from surfaces is not the main way we can become infected. Plus shopping tips to keep you safe at the supermarket 
Chemo Finished
