Organ Damage

Today I watched my mum crumple up into a ball of tears, as I shared my hospital results with her via a video call. Yet again another hefty emotional blow, when I am far away and unable to put a comforting arm around her.

After 3 years of blood transfusions every 8 weeks I have dangerously high levels of iron overload in my body. It is poisoning me and very soon I will have organ damage.

It is always harder for me to keep it together when someone I love breaks down. I am sorry this is hurting you Mama especially so soon after dad died.

I am ten times over the normal limit of iron. When iron breaks down in the body it is toxic if it stored. I need regular transfusions to live, but this side effect is know by specialists as the “hidden secondary disease” because ferritin levels skyrocket.

How long do I have until this happens? My guess, with the maths of how much iron per bag etc and the number of bags I have in 12 months, maybe a year, maybe sooner….who knows?!

I do know that I have not felt right since the last transfusion and my body hurts a lot more, the fatigue is immense and my brain function is like putty. My beautiful Italian friend who came over recently, sensed things were not good immediately. Those who know me, can see things are changing.

My specialist has never had a patient like me, refusing chemo and wanting to take control of their life: living for now, rather than a shitty forever, relying on meds and treatment.

He has no idea how to treat this problem for a Multiple Myeloma patient. Blood cancer is very complex and every patient is different.

The nearest solution is Iron Chelation Therapy, drugs given to Thalassmic patients who require transfusions every month to keep them alive. The drugs purge the body of iron and they take a lot of them and the side effects are awful.

I have a complex, incurable bone marrow cancer. It is a cancer of the immune system. My red and white cells are affected, I have small lesions in my bones from tumours, which will grow to impact my calcium levels and then cause renal failure when my kidneys shut down.

The drugs in question will only speed up some of those issues and give me a whole bag of new problems: infections, pain in the joints, abdominal pain, vomiting and diarrhea, nausea and possibly screw up my kidneys early.

If I can’t maintain a healthy weight and keep my strength up there will be consequences: depression, weakness, loss of strength and zero motivation to want to do anything. Ultimately I will give up and cancer will win. Mental strength and lower stress levels are half the battle with long term illness.

I have no idea how long organ damage takes to become serious. But from reading the first organ to be impacted will most likely be the liver. Cirrhosis is expected and probably the heart will be next. Weakening it and causing AF which is what my dad had, and possibly endocrine glands (pancreas).

My cancer was never going to be a battle I was going to win, I always bet around 52 as my end date. But on Tuesday I felt like I was given a slap in the face, to remind me it might actually come sooner. They said 10 years probable life expectancy.

I felt the same loss of control and fear I felt when I was given my diagnosis in 2017. I had a knot in my stomach and felt sick. I sat crying in the hospital waiting room not knowing what to do.

I walked home in a blur, cried some more, read and read and read and wrote a lot of expletives in my cancer diary and then made a decision. It is not a great set of options to chose from.

I know I don’t want a life of pain and a life being fed multiple pills to off set different things. I want a life which I can manage without too much suffering. I also don’t care how long it is anymore. I am so sick of this shit. I am approaching my 6th year anniversary and I have hated having to dig deep everyday to find something to bloody smile about when I live with pain. I am mentally done dealing with compromise and losing out on so much.

So I will continue with the transfusions, I have to have them to keep me alive in the short term and see what happens next. Chelation free.

Please don’t send me a list of suggestions or therapies or advice, I don’t care what anyone thinks because you are not living my illness. And it irritates the shit out of me, well meaning or not.

I am writing this to update the ones I need to know. It is also therapeutic to put it into words and for maybe some other soul who might be going through what I am, to read it.

My next transfusion is in October, it is a procedure I really hate and now I have another reason to hate it even more.