The results are in...

After all the pregnancy symptoms Simon has had during this treatment (which by the way has lasted for 9 months) this is it, he is on his way home! We are all running around the house squealing, Hugo of course has no idea why and embarrassingly for him has the highest pitched squeal out of us all. I can't believe it's over! It was pretty close, only .05, but I was prepared to kidnap him if it wasn't low enough by now. A very, very happy day.

The results just came in and they were .08, so maybe tomorrow morning.

Well he is still in hospital. Last night his counts were still .18. He has been up since 3am with bad headache. I took him a coffee and spent the morning with him. He's feeling a bit sad and frustrated and we are hoping the tests this evening will show he can come home, but not too sure.

I'm so glad it hasn't been like this all year and that they used to let him home when his counts were down to .2, not .05 like everyone else. Will write more when we get the results tonight.

One more sleep?

Simon's methatrexate counts were .2 something last night so it's possible he may get down to .05 by tonight to come home! He was moved back up to ward 9 last night so that's a bit nicer for him. He woke up with a headache today and didn't sound too great, but I think he's OK apart from that. I'm going up to have lunch with him, maybe the last time I'll visit him there!

Oh today was a bit of a stinker of a day. When Daisy, Kitty and I arrived to have lunch with Simon, there were a team of medical staff trying to get him to have a blood transfusion because his hemoglobin levels had dropped to 67. He had agreed with the doctors that if they dropped below 70 he would do it, but then they mentioned that the bloods taken had been diluted so that may have made a bit of difference to the readings.


Of course Simon then wanted a re-test. They tried to convince him to just do it by sending random people (medical ones) in to talk to him about it, but he insisted on doing the tests again. He's certainly not opposed to having a transfusion if he needs it, but when the risks of having one - although small, outweigh the risks of not having one (when his counts are 70 and above) then he doesn't see the point of having one! He was feeling fine, and didn't have any of the symptoms they thought he should if they were so low. Meanwhile I called mum and asked her to be praying that they would be above 70.


Within an hour the results were back and they were 80. Interesting.

It seemed like yesterday there were alot of things that made it not great for him! Earlier in the morning a doctor had told him his potassium levels were really low again, 2.9 and that he would need supplements. He waited and waited, but didn't actually get any. Later on in the afternoon he mentioned it to the nurse, so she went and asked a doctor and finally he got some.

Also his methatrexate counts were still pretty high (13.something) compared to what they would normally be at this stage. Half an hour after his folenic acid (helps clear the methatrexate from his body) was due the nurse came in and started giving various tablets but not the folenic acid. Simon mentioned he was due for it and that he thought it was more important than these other tablets, but she wouldn't do it. Finally 45 minutes after it was due, he got the folenic acid. The nurse went and spoke to the head nurse about it because Simon was pretty insistent and she had to come back and apologise, he had been right.

At 2pm when the next lot was due she came in and did something then said (in a friendly way)she would leave him alone now for a while, he suggested that she wouldn't because his folenic acid was due again now! It just seems crazy that he is having to be like this and I can't help thinking of all of the patients who wouldn't feel well enough or think it necessary to be watching things so (crazily) carefully.

Often he will be told something by someone then the complete opposite by someone else there. He was also moved to a pretty depressing room, he thinks because he caught them out on so many things, but I'm pretty sure there was some poor person really unwell who needed a room alone.

Last night he was feeling pretty down about it all and exhausted from feeling like he needs to make sure there are no mistakes made. Again, it just makes the end of it all so much more exciting, but I didn't know how he was going to cope. After I got off the phone from my poor sad husband I went and prayed, not really knowing what to ask for that would help the next few days not seem so hard. 10 minutes later David, my brother came in visiting Simon and stayed for 5 hours (this was a really good thing!). They also met a really nice family on the ward and just amazingly had a really nice night. My cousins also phoned him and said they would be coming in for dinner the next night and all of a sudden his days didn't seem so daunting.

This week he has also found it a bit harder being on a different ward than he has been on all year and not having a relationship with any of the nurses there. Yesterday they seemed to be coming and lecturing him on things that he already knew because he had been doing this all year, then they would go and forget what they were supposed to be doing or something and he felt like they should be looking after themselves rather than lecturing him like he didn't know what was happening!

Sometimes this blog may seem like we think there aren't any good doctors or nurses there, which isn't true, there are many amazing and wonderful people there and we are soooooo thankful for the treatment he's been able to have. And I know I haven't written about all of the times when they did things right! There just seem to have been many mistakes made which make this all a bit harder to deal with!

Excitingly I just found out his methatrexate levels from last night were 1.6! Not long now!

Everything is going well, his last dose of chemo finished at 2am this morning and he just has to stay in until it clears from his body down to .05 again, maybe Saturday or Sunday. His white cell counts are up a little, so they are monitoring him for infection, but all of his other counts are OK. They are giving him potassium before it drops too much.

He is getting annoyed with bossy nurses and hoping he will be home tomorrow. I told him he was dreaming.

It is getting pretty exciting!

Simon's methatrexate level was .07 this morning, so it will hopefully be down to .05 tonight so that he can come home. His hemoglobin was down a bit, to 78. Normally they would give blood transfusions once they are 80 or below, but it doesn't seem to be affecting him too much, so they will just monitor it and leave it for now.

His potassium is still a little bit down but not too much and they are giving him tablets for it.

This week my choice of weapon/protection by my bed was a broken china rocking horse ornament thing which I threw out this morning. I suspect I am getting tougher (or just being an irresponsible mother) because I heard noises during the night like the front door was opening and I managed to go back to sleep without even reaching for the horse.

Hooray! He's on his way home.

Simon had a bit of a temperature on Tuesday, then normal yesterday and a bit high again today, but not over 40 so that's OK. His methatrexate levels from the blood test last night were down to 6.9 (and need to be .05 to come home) which is about normal for this drug - at least they're not going up like last time!

This evening he asked for a print out of the results from the blood test last night and saw that his potassium levels were low again, 3.1. Last time when they were down to 3 there was a panic about the danger of his heart stopping, so it's a bit worrying that no one had noticed this apart from Simon considering how bad it was last time. He had to ask to get a test for his potassium levels checked with the blood they had just sent off tonight and is now asking to see a doctor to see if he needs the tablets they gave him last time to get his levels back up.

I'm feeling pretty over it all at the moment. I can't believe that there have been so many instances where he is having to look out for such dangerous mistakes happening and I want to slap people. It seems crazy to me that they're not keeping a close watch on him and his levels.

Well today he has started his (hopefully) second last week of chemo. The two things he dreads the most about going up there are who he might be sharing a room with and the hospital food. He has his own room at the moment which is really, really great and I will be taking him up food, so maybe he will have a nice week? He's hoping he will be able to come back home on Saturday or Sunday before going up again on Tuesday. There isn't really anything else to write and I'm hoping it will stay that way!

Photos of Simon's leg after the operation in April.