Blood:

This probably isn't the nicest thing you'll read all day, But I feel like venting my frustrations and because this is my forum for such things, Vent I shall.

Seven years ago at the start of my treatment for Hodgkins Lymphoma I suffered a serious side effect from my chemotherapy, my bone marrow was depleted so badly from just one infusion of ABVD chemo that it failed to regenerate and I was left with what was considered at the time a seriously low platelet count. I remember the counts were around the mid twenties and the doctors were all quite concerned as the normal rnage is 150-400.

I personally believe that I was given an incorrect dose of one of the four chemo drugs involved in the ABVD regimen I was undergoing. Possibly by a factor of ten. Recently hospitals have implemented new procedures to avoid this quite common mistake when dispensing medication whereby the decimal place is incorrectly/mistakenly placed. I however was completely ignored when I suggested this might be the case. The doctors preferring to believe it was an idiosyncratic episode unique to me. Despite their being no other documented cases of such a response happening anywhere else in the world. The net result was that all treatment was stopped for fear of loosing what working marrow we had left.

It was suggested radiation treatment would to be my only option. I declined. For the next eighteen months while I battled for continuation of the ABVD convinced I had been overdosed, I was in complete remission with no discernible signs of lymphoma. Not bad from one sniff of a supposedly relatively mild chemotherapy applied at the correct dose! (heavy sarcasm)

Anyway time moves on and I've gotten used to having a low platelet count. Platelets are the glue that binds blood together and stops bleeding. Without them, like water, the bleeding (leaking) would never stop.

There are whole support networks on the internet for people that suffer from low platelet counts Idiopathic thrombocytopenic purpura (ITP). Typically these people have counts below the normal range of  150-400 (refers something like 10 to the power of 9 per litre).
I've seen posts by people with counts of around 100 genuinely concerned at their "very low" platelet count and they start facebook forums to discuss their plight.

I haven't had a count over 50 in seven years. Usually it's mid twenties and it has never stopped me from doing any activity. I used to regularly motor race on counts considered too low for surgery. I just drove a bit more carefully. hmmmm come to think of it no I didn't!.

Anyway here we are today, platelet count "1" (read zero!). I had been getting two units of platelets along with whole blood twice a week for the best part of this year. When ever I returned to hospital in the following days for a blood test, my counts would be right back where they started. It became obvious that the transfusions were probably only any good for the few hours, maybe a day even following the top-ups.

I'm also on a drug that helps clotting called tranexamic acid. We have decided that in light of the fact that I have had no major bleeding events we will treat the low platelet count less and reduce the transfusions.

Right now I have blood trickling out my nose. It won't stop, it's been going for the last six hours, it's bloody annoying but what can I do? Nothing.. just mop up the red stuff into numerous tissues as I type and accept it as part of my life. I tried putting a plug of tissue in my nose but when I removed it there was a huge gelatinous mass behind it and that was even more gross than just letting the fresh stuff trickle down my face.

I have to be ultra careful about scratching or just picking at some innocent "thing" that might attract my attention. I can't just squeeze what ever it is that's on the end of my nose because next time I look in the mirror there will be a large purple bruise. Same goes for scratching an itchy arm or leg. I'm covered with hundreds of little purple marks from even the most innocuous attention.

It gets worse. Going to the toilet almost always results in a fairly worrying amount of blood being left in the bowl. If I didn't know what was causing it I'd be calling an ambulance!.

The doctors know the situation but what can we do? We are hoping that after a few rounds of chemo my marrow will start producing again. It's happened before, so there is hope.

It all makes a mockery of the "you can't have more chemo, you can't make us kill you" attitude of one oncologist (now retired) all those years ago. I guess now it's because if the patient dies, no heads will roll. Desperate times, desperate measures...

When I was in Germany getting treatment in 2008 I made a bus trip into the nearby village of Bad Tolz. While on the bus I was phoned by the hospital and told I must get off and wait for someone to pick me up as I had a platelet count of just 20 and was at serious risk of uncontrolled bleeding if I bumped myself. I wonder what they would say now to a count of 1?


I had the second part of the Gem chemo on Tuesday. I feel tired, worn out and pretty low. I know it will pass. I just wish the train wreck of an alien body I'm inhabiting would work, would put on some weight, would stop itching, would have some energy, would stop leaking blood...

..Ron