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
Thursday, April 18, 2019
Wednesday, April 10, 2019
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?
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?
Thursday, April 4, 2019
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.
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.
Wednesday, March 27, 2019
Half way through!
Great start to today. No issues getting the cannula in. Although, I think it helped having kept my arm really warm and buffed up this morning. A bit of a hot coffee cup and rubbing seems to have helped.
It’s a good group of people in here. It helps we are all in the same boat and have the same disease. One of the girls is from Melbourne now living over here! Go figure! But it’s nice exchanging stories and comparing our war wounds! Because this is a bit of a war. It’s our immune system being the baddie and the rest of the body being the friendlies. Unfortunately, in our scenario, up until now the baddies have been winning. Until now. This is going to help win the war. We’ll be in the trenches, fighting for it this week and the next few in recovery. But it’s a fight I’m willing to give all I can with.
I’m feeling mildly flushed today though. So I think the steroids are making themselves known. And the Lemtrada is taking it’s toll. Today went a lot quicker than the other two days. Getting used to the drill now and know when and what to expect.
I believe the next two days are going to be the hardest with the fatigue as today was the last of the steroids. Boo. Although, it does mean no more metallic taste and the days will be over sooner.
I still had a bit of energy after today’s course and even managed to wander across the road, from the hotel, without Tony. Not sure if that will stick the next two days.
Hand wash and antibacterial wipes are our best friends right now. Keeping everything clean and bacteria free is the number one priority now. I’ve also been told cold washes are not good for keeping bacteria from staying in clothes. So hot washes it is. Who knew!?
Anyway, I’m now over half way through. 60% done. Am impressed I still have energy and although couldn’t do a run today, would be happy to do a long walk. Probably not the best of ideas with a compromised immune system, but nice to know i could if I wasn’t so compromised. Be interesting to see what the blood results looks like Friday.
Onwards and upwards!
J
Tough day
Today has been a tough day! Woke up feeling somewhat hungover, without the benefit of drinking too much to get that way. #disappointing.
We managed to get off to an early start this morning, although getting the cannula in was another disaster. First in my hand which hurt like hades! Took that out then proceeded to go up the arm a bit! This then was sore when the steroids were going in. There has been relief since. The nurses did contemplate taking it out but decided against it as my veins are so bad. I’m the bad vein girl!! It improved after a second flush and Lemtrada went in.
So another quiet day of the infusion. Although my day was brightened mid afternoon with a visit from a wonderful girlfriend bearing goodies for me. And the cutest little pillow! Thanks Jayne. You definitely brightened my day!
It was an earlier finish today. Was all done and dusted by 15:45 and felt really good. The nurse asked if they should leave the cannula in, but after the issues I had with it I felt I’d rather theyvtry again with a better site for day three.
Had a bit of a treat with Thai for dinner - lots of chilli. No ill effects after today’s treatment. Actually had a bit of energy and no headache or dry horrors!
Bring on day three.
Tuesday, March 26, 2019
T Day
It’s Day One. It’s finally here and I was nervous as anything.
We woke up and got ready and packed my day pack with all the necessities; book, iPad, headphones, water bottle, snacks, colouring book and pens and the very important strong no mints for the steroid taste!
On getting to Charing Cross we were greeted by a nurse and told we couldn’t go in as the room was still locked and they were understaffed and waiting on additional nurses to turn up. Bad start.
Second bad start was not finding any of my veins to get into. And this after drinking copious amounts of water for the past couple of days. I ended up hiding in the bathroom to do a few wall push ups to see if that helped. It worked!
Blood tests done and I was ready. A saline push then the hour long steroid. Steroid finally went in about 10:45. Another saline wash and finally the grail of drugs! The Lemtrada. Four hours to sit and do nothing. This went on just after 12.
My headphones were a godsend as it meant I could block out bad day time TV, including Neighbours, Home and Away and TV movies!
It gets a bit much after a while, doing nothing. Finding things to keep you occupied and entertained. A bit like flying for long periods of time. You think I would be used to that by now.
The metallic steroid taste was pretty gross. Thank goodness there’s only two more days of this.
The nurses have been brilliant and easy going. They must be so used to people on R1 D1 not knowing what to expect. I almost got my first blood pressure spot on. It was 122/74. I guessed it to be 120/73. Not far off. I finished on 111/65. Still in range but a lot lower than the usual.
I started my lymphocyte count on 1.5. It’s dropped from January, which is a little strange. Be interesting to see what Day 2 is like.
So the listeria diet started hardcore today! Fish and chips for dinner since we are in a hotel and hard to figure out what is safe and not. And it’s even more stricter than the pregnancy diet. :( very hard core.
The amount of people who have messaged me on Facebook or messages is amazing. My heart is overflowing with the amazing support I have around me. And my husband, Tony, the support and city driving you are doing is amazing! Thank you from the bottom of my heart.
Bring on day 2.
Friday, March 22, 2019
Automatic reply is on!
Less than 72 hours to go.
Eek! I have just put my out of office on for work. This is it. I'm now in the final countdown til T Day > Treatment Day. This has come around so quickly and I've realised how nervous I am. This is getting a little bit real.
I have a bag packed of all my snacks, creams and drugs. I've been warned the itchiness is severe for some people during the infusion. Headaches can be terrible. So the strong paracetamol is packed, as are soothing creams - Aloe Vera and Eurax. Water bottle will go in after I have finished it.
Next to pack is the bags. Apparently the comfier the better. So a lot of loose clothes and runners. No make up required. I feel like i'm making a list to go on holiday. If only it was. I do have a couple of things planned to look forward to. This is a good thing.
The nerves and anxiousness with this have prompted a bout of emotional eating. Not a great idea, when I'm about to be pumped full of high dosage steroids. I'm counting on getting one of the not so common side effects - overactive thyroid! I will be in trouble if it goes the completely opposite way though. So between the emotional eating, steroids and under-active thyroid (if it happens), I could be buying a whole new wardrobe! I may need to warn the finance manager now.
But it's here. I am eager to get through this next two weeks. A week of infusion, then a week of fatigue while my immune system recovers. So for a bit of a information session, at the moment my lymphocyte count can be anywhere between 1.9 - 2.1. This is normal for a person. The normal range is between 1.1 - 3.6. By next Friday, my count will be down to around 0.1. Very, very low.
The second week will be sleep. I'm told the fatigue is extreme as my body tries to rejuvenate the cells. I don't think i'll be getting my daily coffee in a hurry. So if you're in the neighbourhood and are feeling as fit as a fiddle, please feel free to drop by, coffee in hand. I will reward you with a massive smile and hug! If you want to Skype, Facetime, call me that week, I would love to chat, although I can't promise how awake I will be.
Anyway - I'm off to do some more packing and spend some quality time with my husband while I can.
Take it easy folks, and I will log in again after the first day!
Jodi
Eek! I have just put my out of office on for work. This is it. I'm now in the final countdown til T Day > Treatment Day. This has come around so quickly and I've realised how nervous I am. This is getting a little bit real.
I have a bag packed of all my snacks, creams and drugs. I've been warned the itchiness is severe for some people during the infusion. Headaches can be terrible. So the strong paracetamol is packed, as are soothing creams - Aloe Vera and Eurax. Water bottle will go in after I have finished it.
Next to pack is the bags. Apparently the comfier the better. So a lot of loose clothes and runners. No make up required. I feel like i'm making a list to go on holiday. If only it was. I do have a couple of things planned to look forward to. This is a good thing.
The nerves and anxiousness with this have prompted a bout of emotional eating. Not a great idea, when I'm about to be pumped full of high dosage steroids. I'm counting on getting one of the not so common side effects - overactive thyroid! I will be in trouble if it goes the completely opposite way though. So between the emotional eating, steroids and under-active thyroid (if it happens), I could be buying a whole new wardrobe! I may need to warn the finance manager now.
But it's here. I am eager to get through this next two weeks. A week of infusion, then a week of fatigue while my immune system recovers. So for a bit of a information session, at the moment my lymphocyte count can be anywhere between 1.9 - 2.1. This is normal for a person. The normal range is between 1.1 - 3.6. By next Friday, my count will be down to around 0.1. Very, very low.
The second week will be sleep. I'm told the fatigue is extreme as my body tries to rejuvenate the cells. I don't think i'll be getting my daily coffee in a hurry. So if you're in the neighbourhood and are feeling as fit as a fiddle, please feel free to drop by, coffee in hand. I will reward you with a massive smile and hug! If you want to Skype, Facetime, call me that week, I would love to chat, although I can't promise how awake I will be.
Anyway - I'm off to do some more packing and spend some quality time with my husband while I can.
Take it easy folks, and I will log in again after the first day!
Jodi
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