Archives For lymphoscintigram

The 7th of November. 

Feeling less shit today – no murdery dreams and my muscles are not so sore, so overall generally better. 

This morning, I wrote up a blog post while shouting at the Tory voices on Victoria Derbyshire. Eventually, I had to put on an episode of Bones because I was getting my blood pressure up. Then I put together the final gnome and took some photos of them all together. Now they’re sitting on the mantelpiece, having a lovely time. 

After lunch, I started work on the next Christmas project, but didn’t get much done before Ann and Tom, the couple interested in Callie and Carlton arrived. They pretty much immediately fell in love with them, as I expected. They are just too gorgeous to not adore. They’re going to change the kittens’ names to Molly and Bertie, so we’ll have to get used to calling them that. Plus they’ve given us blankets for them to get used to/put their smell on. 

After they left, I tried ringing the GP again to talk to this secretary who’s been trying to talk to me. I rang this morning, but she wasn’t available so I was told she’d ring back. When I tried again, she’d left. So then I talked to the team leader who did some investigating, but couldn’t get to the bottom of it. She’ll try again tomorrow, and maybe I’ll eventually find out what they want!

The 8th of November. 

Well, local anaesthetic in the eyelid is, much like most of the local injections I’ve had, not that bad. The only distressing local in the past was for the bronchoscopy, but that was for more psychological reasons than physical. 

Anyway. I was up just before six, because we had to be at the QE for eight. I was first on the list, which I was pleased about. I met Mr. Kolli before going into theatre, and we had a brief chat before he drew an arrow on my forehead so they didn’t do the wrong eye. Then I didn’t have to wait long for the theatre to be ready, so I put on my gown (over my clothes) and shower cap and went to lie down. 

A nurse put some music on (classical, disco, La La Land, Sinead O’Connor) and poured what felt like a gallon of two different strengths of anaesthetic drops in, with a tissue at the side to stop them escaping. Another nurse took her place, and I was given his hand to hold while Mr. Kolli injected the local into my lower eyelid. They both warned me about how awful it would be, so I was surprised to find it really wasn’t so terrible. Not that it was pleasurable, but I didn’t scream or even flinch, which he can’t remember witnessing with any previous patients. Brave Kathryn strikes again. 

Finally got round to zapping the rogue five lashes, and I didn’t feel a thing. So now they’re gone. I have antibiotic ointment to do four times a day (along with all my other drops) and I sported a very fetching eye patch until half past one. We’ll see if it has held off the bruising tomorrow. 

The 9th of November. 

This morning was arduous and long and frustrating. First was lung function. For the first time since I was at the children’s hospital, I had to get in the box (see photo below). Same tests, just different room/equipment. They took forever, it seemed, partly because I had to do one of them four times, plus she had to get some blood from me and it all just added up. Knackering. Then I saw Dr. Thompson, and he was not full of joy. The numbers are the worst he’s ever seen (for me), which is what I was expecting. We compared some x-rays from now and last year, and it is quite clear that the right lung has shrunk and the chest wall has sunk in, so I have less volume and the way I feel now is the new baseline. Great. 

Got out of there about half eleven, so just had time to get some coffee before going to see Andrew. That was a very confusing chat. It seems the lymphoscintigram actually showed that the right side works better than the left, because the lymphatic system is compensating for the rubbish venous flow. So now he wants an MRI with gadolinium so we can get a definitive picture of my anatomy. Which will require careful booking because he or a colleague will need to be there. JOY. And even when we know what is going on where, what we do is still up in the air because so many things could go wrong. Numbness, he cannot fix, but can sort out another MRI for that and refer me for nerve conduction studies. 

I don’t make any sense. 

The 10th of October. 

I live on the floor now. 

Nights are the same, coughing until I fall asleep, then in the morning I’m okay until it starts again. Today, I got a blog post written up, but not posted before it was necessary to lie down. 

Rosemary came for lunch and she arrived to find me on the ground, which is always fun to explain. I got up to eat, but the rest of the afternoon has been face down. I watched an episode of How to Get Away with Murder on my phone, and listened to James Arthur speak very eloquently about mental health on Radio 5. 

It is something I have long struggled with, having been diagnosed with depression at fourteen, and it has varied in severity over time. I have been medicated since I was eighteen, which helps for the most part. I still have days under the heavy cloud, sometimes they stretch into weeks, months, but they end. I know they end. And I’m forever going to deal with the demon that is anorexia which really took hold when I got “better” from cancer. I was in treatment for over a year before I decided I wanted to change. You can have all the support in the world but if you’re not ready to stop self-destructing, you won’t. I still deal with its voice, I worry about my body, how I look. But I know that is not who I am. I am the sky.

The 11th of October. 

I am so tired. I had about three hours of sleep because I was just constantly coughing, and I had to get up at seven because I had to be at hospital at nine. 

It was for my lymphoscintigram in nuclear medicine so we could finally find out if my lymphatic system is the problem in my right arm. I got called through about half nine, having alienated everyone in the waiting room with my cough. I had two injections of radioactive dye in the webbed spaces of each hand, then I had a series of x-rays to see how quickly the lymphatic system would dispose of it. Each scan took five minutes in which I had to be completely still, with my arms stretched out in front of me on the bed. I had six in total, twenty minutes after the first, forty minutes after that, an hour after that, and an hour and ten minutes after that. The final one was me standing up with the machine moved to scan my body. We were able to discern that the right side is not functioning properly, because the dye was long gone from my left arm, but had got stuck in the lymph nodes near the elbow on the right. So now I’ll see Andrew again, and we’ll make another new plan. 

We finally got home at two, had lunch, and now I’m on oxygen because I’m so drained, my sats are dipping. 

What is this rib doing? It digs into the floor and it HURTS.