Fingers crossed, my Lemtrada journey is done. Although the recovery will take a bit of time, the infusion last week was hopefully the last one in the journey.
My first day of three (last year was five) started Tuesday 25 August, and again was only a day procedure. The first day is always the longest, as the blood tests are done first to make sure there aren't any viruses or signs of anything nasty in my body. The wait for this isn't so bad, and the results are fast-tracked and back with the clinic in about an hour. Why we wait for a week to get blood tests back usually is beyond me, but this is another story.
I also have the complication of really crappy veins (thanks, Mum), and getting the cannula inserted isn't the easiest. Day one wasn't too bad, but the day two was terrible. Day three I was prepared and used a heat pack on my arms on the drive in (Tony was driving). Cannula went straight in - "Get it while it's hot" was my catch phrase on day three. 😀
Arriving at 0800 on day one, waiting the hour and a half for the bloods, the one hour of steroids then four hours of the infusion, then another hour of saline flush, made for a very long day in a hospital chair.
Considering the infusion is only done at the MS Clinic which is part of Charing Cross Hospital once a month, there were only three of us on Lemtrada. There were other MS patients there getting other treatments - Ocrevus and Tysabri are two additional infusion treatments, but only the three of us getting Round two of Lemtrada. There were no new Lemtrada patients. One of the others was someone I was with in the initial treatment last year (before I got sick). Unfortunately her journey wasn't so great as she suffered really badly from side effects near the end of day one and didn't return for the rest of the treatment with us.
By the time I got home on Tuesday night, my body had started processing all the drugs, and I felt like a bus had hit me. The headaches start relatively quickly as does the taste from the steroids. Thank goodness for strong English mints. We're given all our medication on Day one, so my paracetamol is high dose and lots of it. It's all the painkillers I'm allowed while on the steroids.
Day two was very much like day one, but a lot quicker. I slept a bit, as much as you can in a hospital chair. After begging to get them to leave the cannula in overnight, the nurses still disagreed, and they had the drama's of trying to get it in on day two. Ouch. Four tries later and they finally got it in, but on my right arm, so doing anything during the day (I'm right handed) made things very difficult. Lucky I didn't have to do much. Turn pages, click on an ipad screen, eat lunch with a fork, you know the easy stuff.
Still on the steroids, with the nasty metallic taste, and the lemtrada, had me in there for six hours. I didn't feel too bad at the end of day two, apart from the usual suspect of the headache. Tony asks me as he picks me up how I'm doing each day, which is good because it helps me to remember to take stock of how I am doing, and what my body is doing. I have never been good with taking note of how I feel, or the whole "Listen to your body" practice, but this is definitely one of those times I need to. The minute something starts going wrong, I need to do something about it. This drug is not something I can take lightly, and the potential damage it could do if I leave things unchecked, is enormous.
Waking up on day three was a little exciting. Knowing this is the last day, and potentially forever last day, put a spring in my step. With my arm under the heat pack I arrived at Charing Cross announcing to the nurse to "get it while it's hot"! No drama llama. He didn't hesitate - and the cannula was in within 10 minutes of me arriving. I need to remember this trick for future blood tests.
No issues with day three in the hospital at all, but I was very weary with every breath I took, on day three, as this is where things started to go a bit wonky last year. It was the night of day three when I ended up in hospital last year with some kind of chest infection. I am still not 100% sure what I had.
About half an hour before the saline flush was finished, my throat started to get scratchy, then clearing cough started. Along with the medications I was given on day one, was a super dooper antihistamine. We do get an antihistamine injected into the IV at the beginning of each day, but by this time, I felt I should take another one. My thought being if it was just the cough making me sick last year, then if I can alleviate the cause of the cough, it may have been nothing.
With the end of Day three, I got to go home after my blood tests had been taken. These were up on my NHS login by the end of the day. Apart from the normal headache and the cough, I was ok. Trying to remember to how I felt last year to compare it, I couldn't. (maybe I should have read my blog).
The hospital staff, from the nurses, doctors, admin and cleaning were amazing. Even with COVID-19 as a threat, not once did I feel unsafe or worried I may catch something. As much as I worry about COVID-19, my immune system is now so non-existent I need to be more wary of everything, from what and who I come in contact with to what I eat.
The first couple of days at home, I have been lethargic. I did get something new, which I didn't have last year. I believe I was really mild, but the rash over my body appeared on day one of recovery. One minute I was fine, the next I was covered. And the itchy, oh my word! Luckily, I was prepared for this. I wasn't taking any chances, even if I hadn't had this last year. And am so glad I didn't. Using the godsend which is Eurax along with the antihistamines, I was able to knock it on the head relatively quickly.
Day three of recovery and I slept 14 hours overnight. This is not something I do, only when I'm jetlagged. Today, day four, and I'm not as tired, but my body is really heavy. Walking is a chore, and even thinking is a little more difficult. It is taking me ages to write this.
Tony is an absolute legend. Not only is he looking after me and making sure I am ok, but he's also had to take on the added task of packing up the flat and starting to arrange the finer details of our move (this is another story). I have been able to help a little, mainly by directing the tasks and providing him with things to put on his list.
The image is not one I put on the list, but being as awesome as he is, he got me the present when he was out buying more boxes for storage! I do love my Jelly Belly's.
I am OK. Physically, not quite so, but mentally I am feeling positive and keeping the vibes this is going to work, and I will be thankful for doing this. I don't know how long it will take to see any noticeable difference in my being. My biggest hope is my legs come back to the way they used to be and my fatigue goes away. If I can only get one of these, then I want my legs back to full strength. The fatigue I can manage, my legs, well.
My wish for you all is to stay safe, stay healthy and most of all, stay happy.
Jxx
