Where did that bus come from?

I'm now 6 days post treatment.  When they tested my blood prior to the last dose the cells were virtually non existent already, so I'm fairly sure the last day of treatment finished off any that were left.  So begins the long hard task of growing a shiny new immune system.  Rather than thinking in terms of how many days post treatment I like to think of it as my new immune system being 6 days old. 

Any one who has been pregnant will vouch for the fact that growing a new human being from scratch is very tiring indeed.  Well I can confirm that growing a new immune system is very tiring too.  Making lots of those new blood cells in a hurry is exhausting, its also quite painful at times too.  Who knew?  When you make them at a normal rate you just don't even know its happening.  But when your bone marrow is on overtime it lets you know about it I can tell you.  It causes pain right inside your bones.  That's not to mention the headache from hell if you don't drink enough, and by enough think twice as much as usual!!

So I finally managed to escape from the hospital on Wednesday afternoon.  It was an interesting day.  Lots of conversations about blood sugars and what should be done, as they hadn't reached anywhere near the holy grail of the single figure target that had been set.  They still haven't.....

The decided to get the diabetes team to see me, so after seeing the MS nurse and the diabetes nurses the decision was made to start me on insulin.  Prescriptions were requested and I was eventually taken to the discharge lounge to wait to see the diabetes nurses again to learn all about what I would have to do.  She arrived with a bag full of leaflets, a sharps box, needles etc and proceeded to give me a whistle stop tour of how to use the insulin pens and how to inject myself.  My head was spinning by this time, I was exhausted and just needed a lie down.  But not yet, my lift arrived, I was handed 2 bags full of medication and released into the world. 

I was so glad to be home, in my own bed.  I'd had 3 hours sleep in the last 2 nights, and probably only about 10 hours in the whole time I was there.  I'm not quite sure how I'd kept going up to that point.  Steroids?  Adrenaline?

Whatever it was deserted me over night, and the next day I felt like I'd been hit by a bus!  Still do! Even the simplest thing like brushing my teeth leaves me needing a lie down to rest.  It's crazy.  I feel like I'll never feel normal again.  I will, I know that, it will just take some time, and a lot of water.  These shiny new cells had better be worth all the effort and behave themselves.

Thank you to everyone for all the support you have given me over the last few weeks, it means more than any of you will ever know.  It's like having my own little Lemmie Army!

Round 2 - Day 3

So it finally arrived R2D3, no where near as snappy a title as day 2, but potentially my last day of taking an MS disease modifying drug for a few years if all goes well. Wouldn’t that be pretty damn amazing if it were the case.  It’s not quite as liberating as it sounds as I’ll still have to attend for blood and urine tests every month for 4 more years, and I’ll still be on the alert for any of the random side effects this can cause even years down the line. But still no more of these dreadful drugs in my system for a bit will be a bonus once I’m out the other side.

After getting finished R2D2, having my late obs done and getting an extra shot of insulin for my trouble,  I had my nice pillow ready to go, only to discover my sheep had all legged it back to the hills and sleep wasn’t going to be happening for me much. I tried reading my Christmas mags, a spot of solitaire, but despite my best efforts was still sat on the side of my bed doing my puzzle book at 02:30 when Rob took pity on me and brought me another cuppa. I made a really concerted effort again at 03:30 and at a push managed just under 2 hours of car napping.  Today has been a long day! 

Had a visit from the MS nurse this morning to go through some of the discharge stuff.  It’s official, as I’m getting antibiotics for a month this year I only have to do the diet for two months. Yay for me, I’ll get off on 18th December just in time for all those Christmas goodies and Boxing Day buffet! This makes me such a happy lady!! There were lots of other things discussed, but this was my takeaway headline!!

Then I had a visit from the Consultant, two consultants actually and a few friends. This was more of a surprise and made me less happy. They weren’t happy with my blood sugars and said I had to stay tonight and see where they’re at in the morning, not unexpected to be fair. But the fact he wants them in single figures for discharge is less so. They haven’t been below 17 since the steroids started, tomorrow could be interesting. They changed the treatment regime a little, higher dose and lower treatment threshold. Fingers crossed.

I had a lovely long chat on the phone with my old boss, which was lovely. A visit from an old colleague from my St John days and a bit of a reminisce with him. Both very nice and helped pass the day till my evening visitors arrived with a nice large cuppa. 

The infusions themselves passed uneventfully in the end, a bit slow due to shortages in trained staff again, but no real issues to report, finished around 9:30 again. The blood sugar wasn’t quite so cooperative.  4 more lots of insulin throughout the day and still nothing really below even 20.  Eventually the infusion came down, I got ready for bed, had some more obs and blood sugar taken another 6 units given for good measure. watched a bit of TV, read, then settled down around 23:30, with my cannula out and my nice soft pillow, I was determined to sleep.  I think at some point I did drop off too, then the nurse came knocking to do my BM and obs about 1 pm, and another 6 units was given.  But you know, I’ve got this sleep thing going, it’s all good! Till she wakes me up at 01:45 to check it again. Still not below 20 and now I’m wide awake.  

I’m getting out of here tomorrow one way or another. Thankfully the lovely nurse is on and I’ve lobbied her already, she’s going to get the docs to work out a temporary management plan for me to go home under. Hopefully she’ll convince them. One of the doctors from this morning poked her head in too, and I lobbied her, so she was going to talk to her colleague that will be here tomorrow. Keep everything crossed. 

I’ve cooked up a plan of my own otherwise, I’m going to take a hostage, to use as a bargaining tool to negotiate early release. I’m thinking possibly the tea lady, I’ll have supplies to keep me doing during negotiations then, plus the rest of the ward will want her releasing quickly to get their cuppa so I’m guartanteed popular support? Look out for the local headlines later.......

Star Wars Day - R2D2

Happy Star Wars day aka R2D2! See told you there’d be a chance for jokes! 

Hope you’re impressed with the outfit, this was a present from my wonderful friends. Made a few people smile today too.

So just when I thought it was settling down last night my BP decided to drop fairly dramatically as my pulse rate rose.  My body having a last fight back at the drugs I think.  Looks like this was an infusion related reaction, maybe because the drug was given a bit too quickly. Anyway after a bit more insulin and a few more sets of obs I settled down for the night completely exhausted, and actually managed a few hours sleep! Probably more than I’d had the two nights before. 

Day two started off bright and early. The day staff came on but weren’t sure what was happening with my infusion, needing to wait till the doctors rounds. So I made a premptive strike and went in search of the MS nurse, to lobby her for it to go ahead. She came down and had a word, just needed the all clear from Dr S and we were good to go. Unfortunately due to the lack of IV trained staff it was pretty late by the time it went up. As it was all to go through slower today this meant being hooked up for 10 hours!! Literally not being free until 10pm. 

All in all today has been a much better day, even being secured to the spot for 10 hours! Not felt anywhere near as poorly as yesterday when I did feel very rough indeed! So I’ll take that. Nice normal obs today, apart from those pesky blood sugars....

I started the day on 17.4, so it was never going to be great let’s be honest? But I did learn a new skill today, I gave myself my first ever insulin injection, I actually gave myself 4 in the end, so I’m pretty much an old hand now. The upside being if they do send me home with some I’ll be able to manage it. Had my big girl pants on today! I do hope you’re all suitably impressed. 

I’m starting to think getting out of here tomorrow is looking less likely, I’m mentally preparing for an extra day, and early release will be a bonus. However I’m not prepared for any longer than this, so get your shovels ready to dig me out? Alternatively just kidnap me and bundle me into the lift, but don’t forget my pillow! 

I’ve had my nice soft comfy pillow brought in from home, I’m convinced this helped me sleep better last night. I do like my home comforts. The thing I’m missing most, apart from my bed, family, being able to come and go as I please and decent food, is probably a good old home made cuppa, or even a work made one. Have a few colleagues who make a pretty cracking one, Ju, Ryan and Karen spring to mind. Missing my old mate Rach and her tea too!! Oh my word, I’m missing work, it’s worse than I thought!! Start digging now.......

 

Lemtrada - Round 2, Day 1, the journey begins

Welcome to R2D1, save the jokes for tomorrow, I’ve prepped for it! Watch this space!

So as I said before, this year is inpatient treatment, they won’t have me on the day unit for safety reasons. Saw the MS nurse a few weeks ago and it was all systems go.  Bloods were all clear of the Nasties like HIV, hepatitis and TB, so let’s have this.  The plan was to bring me in on the Sunday afternoon (14th October) and start the treatment on the Monday.  I had a schedule sorted out, planned the weekend in military detail, then the phone rang at 13:30 on Saturday afternoon to ask me to come straight in as they had a side room available. So I finish packing my bag and off I go!

After arriving about 14:30 I was settled in and they did the paperwork. Didn’t see a doctor until about 9 that night, but I was told this was all fine, they just needed the bloods results for the Sunday morning and we were good to go!

Sunday morning came and went but sadly my blood results did not. Just when I was beginning to dispair that it wasn’t going to happen the loveliest doctor showed up with cannula in hand and got it in first time of trying! Things were looking up! The steroids started, they started to take effect and I got a bit bouncy, nothing too much, Tigger on a slow day. Then the taste started, who slipped battery acid in my tea?

Lemtrada was up next, and again I could feel the effects, started to feel very tired, headache started, and generally felt eurggghhhh (very highbrow medical term), but still things were going well. Lemtrada finished, and the last bag of fluids went up, which is when the wheels started getting wobbly. Temp started spiking, I was freezing, then shivering, then hot and sweaty, then clammy, and the temp hit 38.9 despite open windows, paracetamol, a fan and lots of cold fluids. I’ve had two docs come and have a poke and a prod and they’re none the wiser, so we watch and wait.

Then the blood sugar, not wanting to feel left out joined in. At 23.7 I had 4 units of insulin, playing the waiting game now.

The good news is day one is in the bag, well more specifically out of the bags and in my veins. I’m sure I can feel my lymphocytes dying already, but I might be imagining that, they might be fighting back and that’s what’s happening with the temp. Anyway it’s done and I can move around and go to the loo with ease again.

Tomorrow’s start will be delayed while they consult with the boss (the MS nurse) and possibly the consultant. I’m hoping the delay is in hours and not days, I’m not staying here! My sights are set on Tuesday, Wednesday at the latest. So any longer and I’ll be looking for a task force to dig me a tunnel?  Volunteers please apply below?

In the meantime I’m still smiling, have a row of Welsh Sheep lined up to count later and I’m desperately hoping for sleep to arrive. Despite asking two doctors, no sleeping pills are written up. Last night I couldn’t sleep but I stayed in bed and kept quiet, tonight I might be a bit more difficult if I can’t, they’ll be making sure I have them for tomorrow....