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?  

Screeching Halt

This time last week I was in A&E at Charing Cross Hospital. During the night I had started coughing and once there was blood in it, I knew I was in trouble. So off to the ED we went with the hope it wasn't anything too serious, and I could continue on with the treatment once the doctors had figured out what was wrong. In all honesty, I knew it was unlikely I was going to be able to continue with the treatment. 

I had been feeling pretty good up until this stage and was pleased with my progression through the treatment. 

After a few hours in ED room 8 I was transferred over to the Acute Awareness Unit. I was being admitted and my treatment was being stopped. I was met there by Doctor Thomas and after having a quick discussion, taken to my room. 

The blood tests which had been done in the Emergency Department had already loaded on to my records, which I have access to. PatientKnowsBest  This is a great tool and means I have immediate access to my records. But I had to show Dr Thomas my lymphocyte count, which was already 0. However, the result from my chest x-ray had come back and he said it looked like an Upper respiratory infection. Great. There goes treatment.

I was admitted and administered with pills galore. Not only the medication I had been taking with the Lemtrada treatment, but also another three types including penicillin. So there's now antiviral, antibacterial and two antibiotics. 

They finally concluded I had pneumonia, but also need to see a speech and language therapist to figure out why i don't swallow properly. Well, I do, I just sometimes choke on my own saliva. I was discharged with promises I will go back if I get any worse, and see the therapist. 

The problem is with this, is even with all the drugs, my immune system is unable to fight it. The medication needs to do ALL the work. Which means it's going to take a bit longer to recover from this than usual. 

I  have now been home for five days and spent a lot of the time sleeping and binge watching TV. This was already expected from the infusion but I may not be as bad as I would have been if I had completed the five days. I won't be able to continue on with it, until the pneumonia clears up and I am healthy again. I haven't been able to speak to the MS clinic yet to figure out what next. And if I need to start from scratch. I hope since my lymphocytes were at 0 when all this started it's actually going to have a good outcome. But only they can tell me this. 

 I don't feel sick and I don't look sick apparently. But I am still sick and need to stay away from any possible risks of infection from anything else. I am on rest this week, which I am doing. I need to recover from this and find out what next. But I am good. I was devastated last week, but I am okay now. I only hope I can keep infections at bay and recover from the pneumonia quickly.