I’m Home…but it’s not over

After 13 days in hospital I was finally allowed home 3 days ago. That was only because my stair lift had been installed last week and my medical team felt that I would at least be a little safe. They are worried about me and the more they worry the harder it is for my husband and I not to be concerned.

So why the extra worry? Surgery did not go well. After 2 hours of trying to remove my rod in my femur to replace it with a larger one, my Surgeon had to abandon his attempts as the screw at the hip had fused to the rod and would not budge. He did manage to do some internal bone grafting but when he came to see me the next day he was devastated. He had torn so many ligaments and tendons at my hip and the bruising is extensive. It is known as hardware failure. It can happen but we really could have done without this complication. I have a lot of healing ahead and the very real prospect of having to have the surgery repeated at some point in the future as the rod is compromised. Devastated? Yes, that’s one word but to be honest I’m in so much pain and so tired I don’t really know if it has all sunk in properly yet.

I think what I am more upset about is because the surgery ended up so complex, my Surgical team were not able to take a fresh bone biopsy. My Endocrinologist had a Specialist Bone Histopathologist on standby in Sydney and a courier was on hand to make sure the bone was delivered following the special instructions the Specialist had provided. We were so close to getting some real answers regarding my bone disease. When I woke up from surgery, even though I was in pain, I was excited to think about that bone biopsy.  I wasn’t told until the next morning that none of that happened. My heart sank!

Over the next few days I had allergic reactions to the anaesthetic and the morphine based drugs and I just felt awful. Much of what went on in hospital is a bit of a blur and I feel emotionally and physically depleted. What I have been told is that my Bone Marrow Biopsy  ( taken the day before my major surgery) is clear of blood cancer but is being tested for a mast cell condition called Mastocystosis. Systemic mastocytosis or mast cell disease, is a disorder that results from the overproduction of mast cells (a type of white blood cell), in the bone marrow. These cells accumulate in the blood, lymph nodes (glands), skin and other body tissues. With bone marrow involvement the process is eventual bone marrow failure. Hopefully I will know more this week. If I test negative for this then I will have a bone biopsy in coming weeks and the sample will still be sent to the Specialist Histopathologist.

So, we have a plan and that helps come to terms with what really has been a disastrous fortnight.

My faith remains firm. Sometimes prayers are not answered in the way we would like them to be. There may be a reason for the events of the past fortnight that I am not aware of and may never be aware of. The path that unfolds before us is a different course to what we expected but it may be the right path, the path that will eventually bring the right answers. I could curl up in a ball ( although physically not possible at the moment😊) but I am choosing to take one day at a time and leave all the questions and concerns in Gods hands. I am tired, I need to rest , I need to get strong and I need to relax as much as possible.

I also need to get used to my stairlift. It is so helpful but I still keep pinching myself that I really need it. I used to think of my condition as temporary but somehow the arrival of the stairlift in my home has made my disability seem more real, more permanent. Having to aquaint myself with it for the first time after being discharged from hospital and in so much pain, was probably not the best circumstances to use it for the first time. I felt so fragile and quite unsafe on it. It seemed an intrusion in my home. 3 days on and I’m happy to report that I am adjusting and so appreciative of it. It really is my new friend and it’s enabling us to stay in our own home so there really are many reasons to choose to smile.☺

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