10 days on

I am now 10 days in to the recovery zone, and I'm doing OK. The headaches have dissipated, the rash is gone (it only lasted a couple of days), the itchiness has eased off almost completely and the fatigue is a lot less intense than it was. Although, when talking about the fatigue it is hard to guess if it's related to the Lemtrada infusion or just the MS in general. 

Around Day 4 of recover, so maybe a week ago, my legs felt like concrete. I couldn't walk well, and when I did, I more dragged than walked. In all honesty this time feels a lot worse than last year. However, last year I was in hospital for half the time anyway, so it's a very different game in 2020. 

The blood tests which came back the last day of the treatment did not have a full report done. It seems one of the vials which was taken had some issues, and the blood clotted. 

It's probably from the arm which now, 10 days later, has a huge black bruise on it from where the nurse decided to jiggle it around a bit to get the blood out of the vein a bit better. So all the really interesting results; White blood count, red blood cell, lymphocytes etc, don't have any information to share. Which is really disappointing. Hopefully the test I get done at the end of September will give me a lot more information. This is really important this month, as with the relocation at the beginning of October (more on this story in our "Adventures" blog), I kind of want to know how I am doing before leaving. 

I haven't had any other side-effects (touch wood), and hope it stays like this. I'm now in the 12 weeks of shielding. We are both being super careful. COVID-19 just puts the additional sting in the shielding and makes us even more aware of how and where we are going. I have only left the house to go out to the garden and bins. I haven't ventured outside the gate yet. I sit at the window in the lounge and watch people wander down the street. I think I've become that woman in the window watching all the comings and goings of the neighbours. Hah! I'm bored... even watching the police station which we look out over is boring! Nothing exciting happening there. 

I'm doing OK. A little stir crazy, but I'm OK. All I can say is thank goodness for Ipad game like Words with Friends (thanks everyone who plays along), NetFlix, Amazon, and Plex! I don't know what I would have done without them! 

Stay safe and well everyone. 

Jx

All over, red rover

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

Recovery

In to Day five of the recovery and I feel worse than ever. Day One, Saturday, wasn’t too bad and I even went for a short, slow walk to the supermarket. I figured I had this and we would be ok. Sunday I spent a fair bit of time on the couch, sleeping or watching tv. I did feel like I had a sore throat but was hoping it was nothing major. 

Monday completely ripped me apart. I have a cold and the fatigue is all consuming. Fatigue in MS is quite common, and it is a whole body slump, but this, this is so much worse than I have ever felt. My legs ache from fatigue, my brain is muddled and my whole body just wants to curl up and hibernate for 100 years. I have never felt this bad. And to top it off, the cold is an additional annoyance which I can’t fight easily without an immune system. Am feeling very sorry for myself. 

Last week was MS Awareness week here in the UK, and I completely missed it due to being a little preoccupied with my own battle. I try every day to raise awareness of this disease, one way or another. Whether or not it’s this blog, learning a bit more about it myself, or telling someone something else about what can happen to people with it, I am passionate about sharing the knowledge. Like I’ve said in earlier posts, when I was diagnosed, I had no clue what it was or what it was going to mean. To me, to my family and friends. If any of this blog has helped anyone understand it a little more, then I am happy.

So I’m lying here on my couch, feeling sorry for myself. And very slowly typing this up, as the brain isn’t quite functioning normally (complete brain fog), hoping this doesn’t last too long and I can get back to work. I’m bored, and want to get back to normal life already. 

J

Addendum

So that’s it. I’m done for the year! It should have been posting this a month ago, but ho-hum. It is what it is. I’m done. 

After the half hour wait for the flush of my system to calm down I had to then have blood tests! Comical, to say the least. Theee nurses tried to take blood. You know the saying ‘blood from a stone’, I’m a stone!! Three nurses, six attempts! It got to the stage where they were getting the vein, but the blood wasn’t flowing! I know my veins are bad, but this was awful! My arms look like something from the Mummy with all the white bandages covering the needle marks!! First nurse finally got it, but wow, some of the most pain I’ve felt in a long time. 

So now the monthly blood tests begin. I need to be aware of all the additional side effects the EMA have their concerns with. A higher risk of DVT, along with pulmonary embolisms/edema. Not a great deal, but close monitoring and following medical advice should keep me on the road to health and a little more MS freedom. 

So, to the road to recovery, i toast you, my reader. 

J

Round one almost done.

It’s been a bit of a crazy week. After having a great Easter and getting a lot of walking in, I spoke to a nurse at the MS clinic on Tuesday morning, my chest x-rays had come back clear and I was able to continue on with the Lemtrada treatment. Very last minute,  it they were able to fit me in to the last two days on Thursday and Friday. 

Here I was again yesterday, back at the infusion room, in my same chair! So half a dose of steroids since they’ve worn off since I was here last, then four hours of infusion. Same again today (Friday) and with two rounds of blood tests. Start and end of day. 

It was really lovely to see the nurses again. Some of them were so shocked I had pneumonia and said I didn’t look sick or show any signs of it. I keep telling them, I didn’t even feel sick.  It they’ve been great and are a really good bunch of people. You know nirses have yo love their jobs. To do what they do, to get paid so little, is beyond me. They do so much more than my specialist does, and he’s the one who gets the most money for it. He hasn’t even been past. 

One of the other things which has been amazing here, is meeting all the other people in the same boat as me. We’re all in the same position, although some are worse than others.  We’re all fighting the same monster. We all have our different mechanisms of coping. Even during these long Infusion days. I have the iPad on which I’m playing a few games and talking to a few people (and writing this). Others have their movies or shows they are watching. I’m currently sitting next to a woman who is as addicted to Harry Potter as I am. She has watched the whole box set this week. 

The side effects of this are terrifying, but I wouldn’t change having done this for the world. There are far more positives of this than potential side effects. I’m looking forward to being able to get back to walking long distances again, without having to stop to rest my legs. I have noticed with this treatment my taste buds have changed. Am hoping it’s not a permanent thing.  I am also back on the listeria diet for another 4-5 weeks. Just as I was about to get off of it, I have to get back to being careful. And I was very much looking forward to some soft cheeses and a good steak. So when I am off this, we will be going to a nice steak place to gorge on steak, quite possibly with blue cheese sauce. So this now means my birthday and our wedding anniversary dinners will need to be bland. 

So that’s it. I get through today and I’m done for 12 months. Three days next year, and hopefully it will be all I need. Blood tests every month for the next four years. I can manage that. 

Arohanui 

J

No updates

Hello everyone. As Easter arrives with a burst of English summer, I sit here looking at all the pollen floating outside my window. I'm reluctant to venture in to the outside world, and succumb myself to the little fluffy, itchy, eye-grazing, eye-watering spores from hell.  In saying this, I do want to be warm this weekend. I think after the last few weeks, I deserve a little bit of warmth. Real sun-inducing warmth. So I may dose up on some anti-histamines wear wrap around sunglasses and head to the sun. Even if it's only the communal back yard, I can cope with that. The outside areas at the local pubs could also be calling our names. 

I am still waiting for the results from my chest x-rays which I had done last Friday. The NHS system amazes me sometimes. When admitted to hospital with the pneumonia, the chest x-ray was done at some ungodly hour of the morning. The results were back by breakfast. The X-ray done a week later is still outstanding. I'm hanging by a thread here. Until I have this back, there is no progress on my final two infusions. I spoke to one of the nurses at the clinic yesterday, after I left a message for them to call me. I'm to wait until after Easter, and call back to see if the results are back, then they'll try and fit me in when there are some 'chairs' available for an infusion. 

The infusion centre is a room at the hospital with about 14 chairs which they book out for the infusion weeks. Infusions are usually done in the final week of the month. This means, if they are all booked out, then I need to wait until the following month. Don't ask me why this happens, but it does. You would think, because I've already had the first three, they would try to follow up as soon as possible. I did ask if because of how long ago  it was, if I would need to do the steroids again. He wasn't sure, but thought it should be okay and they stay in the system for up to six weeks. I'm not confident I will have the next infusion within this time frame. So it really is up in the air, until at least next week. 

There has been a bit of an upset with the Lemtrada treatment in the community over the past week though. The EMA (European Medicines Agency) has advised to not progress with the treatment for MS sufferers who haven't yet started it. It has concerns with some of the side effects which have presented in a few patients. This has left people in a complete panic and so many patients who have been preparing themselves for the treatment, have been told they will be switched to a new treatment. However, these side effects were documented before starting the treatment and a lot of patients (myself included) were willing to take the risk to increase quality of life. Lemtrada is known to be one of the most successful with longer term benefits than the other treatments. 

Most of the side effects concerned present after day three of treatment, and include lung issues. Which is exactly when my 'pneumonia' started. No one has called me. No one has actually suggested this is the issue for me. I have spoken to the nurses a couple of times now, and they didn't sound at all concerned at my diagnosis. So I'm going with the knowledge of the professionals in this case. Until I hear otherwise, or I can talk to someone, like my neurologist to reassure me. I am going to try and contact them next week. I think some reassurance would be good for my overactive imagination. Although, am sure the older I get, the more indestructible I feel. I've been through worse. But have I? 

I'm going to relax over the long warm, sunny Easter weekend. I will avoid thinking about it. Apart from the constant hand sanitising, anti-bacterial wiping and avoiding potential listeria infected food, I'm going to put it out of my mind. 

I hope you all have a lovely Easter. Over indulge on the eggs and hot cross buns, and take it easy. 
Jxx

Back to the Grindstone

After a solid week of sleeping, I finally ventured out of the house for the first time on Saturday. I felt okay, but was glad Tony was with me to pick me up in case I fell. And to keep me on top of the handwash. Anti-bacterial handwash has become my best and closest friend. I have to say, there is a reason for this. It is amazing how many places you can pick up the most innocent of bacteria. As if any bacteria is innocent. And, as you can imagine, my hands are so very dry. Which I hate. But it's keeping me healthy and away from infection, so I'll pay the price. So my second best friend is now hand cream. And the stronger, the better. So to the coffee shop we went.  I wasn't game enough to have coffee though when my anti-biotics have also warned me off caffeine, so a hot chocolate was my treat. 

Sunday was another walk to the coffee shop. And I managed a little bit further again, being a quick visit to Tesco to pick up some groceries. Staying away from people in a supermarket is so much harder than you would think.  The worst ones being the ones who are sneezing and coughing, without covering up. This was my first day of being able to have a coffee in a week. It was only a weak flat white, and after a week without it, tasted divine. 

Back to work in my home office on Monday morning bright and early. After two weeks of not having to be up for the alarm clock, this was a little bit of a rude awakening. Unfortunately the come-down from the steroids has also set in, so sleep hasn't been all that forthcoming when going to bed. As you can imagine, getting up early after two weeks of not having to be, the added issue of coming down off the steroids and not sleeping, waking up Monday morning was a bit of a tough call.  Hello! full strength coffee. Large strong Americano come to me! 

Over the past few days, I have noticed a couple of little twinges of different things which I'm not sure about. Although the steroid taste has finally gone, my tastebuds seem to have changed slightly. My sense of taste feel like they have diminished a bit. Having a strongly flavoured chilli (I am cooking again as well) the other night, and it tasted a bit bland, whereas Tony thought it was fine. The only thing I can really taste are strong mints. I hope this doesn't last. Food won't be the same if this keeps up. 

My legs are achy as well. This used to be a thing which happened after walking too far or exercising. But at the moment, this is a constant. And worse when I am trying to get to sleep (one of the factors of not getting to sleep at night). Sitting, standing or lying down, this doesn't matter. Again, this had better not last. I didn't sign up for that when I said yes to doing this treatment. It's meant to be helping the legs work properly again, not make them worse. 

The next one, I'm not sure is happening because of the treatment, or I'm getting old. My eye sight has deteriorated in a huge way since the start of the treatment. It had deteriorated a bit before I started, but it's got so bad now, I'm using a cheap pair of Boots Chemist readers to read books and my iPad. I have to turn my phone to landscape to read things on it. Am sure this is age... 

Today wasn't as bad as the last two days, and I do actually feel really good. I don't feel sick. I don't feel like I can't travel, go near people who are ill, eat potentially listeria infected food. I feel like myself. And I forget I'm going to be like this for a few months. At least the food diet should get better in the next couple of weeks. But I don't look or feel sick. I even went as far to offer to travel for work next week, then realised there's a reason I'm not meant to. And was reminded of this by my Project Manager. He's got my back, even if I don't. 

I spoke to the M.S. clinic last week. I am going in to have a chest x-ray this week. Once we have the results from this, and fingers crossed the pneumonia is a distant memory, I can get the last two days of treatment. So keep everything crossed for me I can continue on with these and the last week of no coffee has been worth it. 

So there it is, I'm back, I'm happy, but I am still infectious; infectable?