It has been a while since the last post and it would be nice if that had been because I was just having too much fun to find the time but alas this is not the case.
Having completed my first 3 day BEP session on Friday 17th April i had a great experience during and the weekend had gone well too. However by Monday I was definitely starting to feel effects which I felt were a little more than fatigue. i was due a round of Bleomycin on Wednesday 22nd. However over the course of Monday and Tuesday I dropped like a ton of bricks eventually been brought into hospital via ambulance on the early hours of Tuesday morning.
As a child I had suffered an extreme bout of anemia caused by a rare condition called Herediitary Spherocytosis. This is a condition which effects the shape of your red blood cells which causes the body’s spleen to destroy these cells. On average most people’s red blood cells will survive 90-120 days before the body needs to make new ones, in the case of folks with HS they can last as little 10-30. Generally when faced with a severe case as a child the prognosis is almost always complete removal of the spleen which will lead to the anemia no longer been an issue but one becomes at increased risk of infection. In my case as the story goes I was admitted as child to hospital with severe anemia and the doctors were torn between a diagnosis of Leukemia and HS. With the condition not getting better the doctors had told my parents I may not make it and an emergency spleen removal was recommended. My Mum at the time was hesitant to allow this as they were unable to provide an accurate diagnosis and felt it all seemed a bit like guess work. However as the story goes one morning I awoke from having been bed bound near death for several days and proceeded to walk around the ward introducing myself to all the other patients and nurses as if nothing had ever happened. Many years of outpatient appointments followed with me finally been told i did not have HS due to the fact recovery such as this is not possible. Fast forward 20 years and I received a conclusive diagnosis for HS on a visit to haematology due to advances in the ability to test for the disease. I have lived my whole life with the condition and never required and assistance in dealing with it.
The funny or not so funny thing is that during my two oncology appointments post orchiectomy, having been bombarded with the diagnosis and the risks of chemotherapy and signing 100 and 1 consent forms the only question I had posed to the oncologists was whether my HS was going to be an issue. Sometimes it sucks to be right I can tell you.
So back to the present, brought in to hospital early hours of Tuesday morning feeling like i could only remember having ever felt as a child. The ambulance crew who assessed on the night had told me my levels were all excellent. Luckily the nurse at the hospital made the decision for them to bring me over to the Leeds hospital where I am receiving my cancer treatment. The initial doctors assessments followed that of the ambulance crew telling me my levels were all fine. I had started to worry that I had made a mountain out of a mole hill but having been very in tune with my own body for all my life I was convinced otherwise. Eventually one of the nurses came and revealed the result of the blood tests. My red blood cell count was at 67. 120-150 is the normal with any level below 80 been where the doctors would perform blood transfusions. Again sometimes it sucks to be right.
Wednesday now instead of chemo was a day for 3 units of blood transfusions to try raise this level back to normal. One of the annoying things about this level of anemia is that your heart rate must increase to get the blood and oxygen around the body. For me typically 59 is my resting heart rate and if weight training at the gym for example 115 will be the peak. The last 3 days it has not gone below 75 with a simple walk to the toilet spiking at 120. However the most annoying part is that I can hear my heart beat in my head 24/7. With periods where it sounds as though someone is smashing a large metal door with a very large hammer. This was a common issue for me as a child but I had never known until now the HS was the cause of this.
So we have had three units of blood on Wednesday which should resolve ones levels fairly quickly. Blood tests were taken early on Thursday morning followed by a revisit from the nurse within the hour. The doctors have requested we take the bloods again she told me, as the results are very strange. I laughed and explained I have been well used to hearing that regarding my blood tests my whole life. She said my blood count level was now showing 54. The second set of tests confirmed this so Thursday was again Dracula time with 2 more units of blood received.
It is now Friday morning and last nights blood results showed a slight improvement to 64. However I can’t say I feel on top of the world this morning so will be interesting to find out the results of this mornings blood tests. For now chemo is on hold as it looks like this old enemy has decided to join forces with the new one.
For me personally though I will definitely have a new appreciation for silence once this constant pounding goes away. I will update once I know more but I think I’m now considered a tricky patient which at least makes me feel special 😂