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. 

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

160 hours to go

Seven Days post treatment

This time next week I would have been at the M.S. clinic for nearly eight hours already. This has come up so fast.  I have been so busy with work and other things this has really crept up on me. A part of me is dreading this. My anxiety levels have slowly crept up on this along with the treatment. A few weeks ago, I was fine. I was thinking 'I've got this'. Now it's less than a week away and my nerves have started to fray. It probably hasn't been helped by the fact I am no longer on any medication for the M.S. 

Yesterday I started on the CBD oil. Cannabis oil, which you can get at the Health Food shops in the UK. Without the bad stuff (or good stuff, some would say) in it. I don't feel any different, but today the fatigue isn't the same as it usually is. So I am hoping it is helping. It's put me out of synch, not having the twice daily pill. 

Trying to organise the next eight weeks for work and my travel, has been tough this morning. I am convinced I am going to be okay after the first couple of weeks. I know this is restarting my immune system. I know I am going be tired the first week after. The week after that I am planning on being back at my desk, working. I am lucky enough to work from home, which I have in my favour, recovery wise. I won't need to leave the house. I can recover at my desk for the following three weeks. Then I am back to travelling at the end of April. I will spend Easter at home. I worry I am pushing it, knowing the effects I could possibly suffer. At the same time, I feel if I start to worry and think like this, I will suffer. Power of positive thinking. I can do this. I will do this. If not, I will do what I have always done. I will push through it. I may complain a little bit, mainly to Tony and any friend and family who will listen. You can't tell me to suck it up, I have a really good excuse. 😅

It only dawned on me over the weekend (while stocking up on snacks and breakfast items), I am not paying for this. It is all part of the NHS and the care it provides for tax payers. As much as the NHS gets a bad reputation with the amount of red tape you have to get through to be in the system. Also the waiting lists and some forms of care, I can't in good conscience say anything bad about them. For the last three years I have been paying £16 every three months for my medication. Compare this to the $60 a month I was paying in Australia, and goodness knows what the cost is in New Zealand, America and other parts of the world. I am lucky I am having this treatment here. It is a good thing. I don't even want to contemplate how much it would have cost otherwise. Would I have paid for it? Would I have suffered through, continuing with the existing medication? It is not a question I have to answer, but is one I have thought of. What would my options have been? 

There are other drugs which can be taken for progressive M.S. After 15 years since my diagnosis, I am one of the lucky ones. I have been told this by a couple of neurologists and nurses. I haven't progressed as fast or as much as others. Most people who are diagnosed with this 'monster', by now, are a lot worse than I am. I think most of my diagnosis is hidden. I struggle with my walking a lot more now than I did, although I still don't use the cane I have as much as maybe I should. I do try to be in bed early, and have quiet weekends. It is the plan at least. Sometimes this doesn't happen.  Maybe it will tonight. 

The last one

Eleven days pre-treatment:

Last night at dinner was a bit of a momentous occasion for me. I took, what I hope to be, my last ever oral pill for the MS. 
My little blue pill which has been part of my life, twice a day for the past seven years, is now a thing of the past. This is it. The real countdown has now begun. it didn't seem so real before now. Yes, I have been trying to be careful with my food and the 'pregnancy' diet to avoid getting listeria. I have been attempting to keep everything around me sanitised to the point of OCD (which I am very far from). 

This little pill is the reality starting to kick in for me now. I don't know how long it will take to leave my system, or how I am going to be after not having it for a couple of days. But it's gone. It has been such an intrinsic part of my world, and a natural one, it feels strange not having to make sure I take it with dinner or breakfast.  Or having to have protein with it. It feels liberating! Who knew!?

So 11 days left before i lose my immune system for a while. I have been reading up on the lymphocyte count and the difference between B and T cells tonight. It's all rather scientific, which my brain doesn't do well.  My current count according to my last blood test was 1.9 (where the normal range is between 1.1 - 3.6). With the Lemtrada treatment this can drop as low 0.25. So the immune system - severely compromised. Contracting a simple common cold has the potential to be devastating for me. All I ask, if you want to visit, please don't bring any bugs with you. Tony has been told if he gets sick from being at work, he will need to stay somewhere else until he is fully recovered. 

It will take about a month for my count to be back within a marginally safe range. But like M.S., this is different person to person. 

Wish me luck! I may share some of the side effects I've been reading about next 😏😆

Take it easy. 
J

A diet to kill me!

Day 8 - 21 days til treatment! 

Kill me! Kill me now! I'm really struggling on this Listeria diet... what on earth do pregnant woman eat?? I can't have anything I really love. My steak has to be cooked to a crisp, I can't eat shellfish or soft cheese!!! Apparently no delicatessen food either. So no chorizo, salami or hummus. My favourite lunch food is off the cards. Ryvita with cottage cheese and ham is no longer part of my lunchtime routine. My soft poached eggs have been taken away from me.  Everything has to be cooked... I have another seven weeks, at least, of this. Please someone don't disappoint me tomorrow and tell me I can't have ham and cheese toasted sandwiches either. 
I have a new found respect for all mothers and pregnant women now. What did you eat? I'm in complete awe of you doing this for nine months. It is not a reason I never had children, but now knowing how hard it is, it really could have been a subconscious mitigating factor. 
I have one saving grace though, I can still have wine and whisky. So again, hats off to all pregnant women. 
There is something to be said for not being able to do this, for what I'm told is longer than nine months. The realisation I am doing this to stay healthy for this treatment is a bit startling. And making it so very real. If my immune system is compromised prior, I will need to filled with antibiotics before they can do anything. Something I really want to avoid, as the drugs going in to my system are pretty horrific already. Steroids and an immune system killer. I really want to avoid anything else if I can. 
It is hard to believe I am only three weeks away from being a pin cushion for five days. This is looming up fast and I'm not quite sure I'm okay with it. There are really conflicted feelings about it. On one hand, I really want to get this done and dusted, so I can get on with things. I'm putting so much on hold until I get through the treatment and recovery time. Going away anywhere is going to be minimal until I can take stock of my recovery. Although we have booked a few days over my birthday in May, I'm not sure how well I will travel. I am hoping seven weeks post treatment I should be fine. I'm really hoping three weeks post treatment I will fine. 
On the other hand, I'm terrified it's all going to go to custard and I'm going to suffer tremendously. Some of the side-effects of this have left me reaching for the wine and whisky bottles. They are low odds, and because my M.S. is relatively moderate, I've been told I have a better chance of not suffering most of these. This is worse case scenario, but terrifying none-the-less.  But I am told the chances of the M.S getting better are higher than these side effects. So it's the risk I take. 
Some of the more common ones during the treatment can be dealt with. I've been instructed by people who have already been through this to take plenty of Aloe Vera, antihistamines and paracetamol. 
They say Knowledge is Power, so at least I am going in to this forewarned. But I wonder what is worse. Knowing all this, or is ignorance really bliss? 
I'm off to cook a listeria friendly dinner of chicken stir fry (with all my vegetables well washed, and because it's chicken - well cooked). 

Happy reading! 

Countdown is really on.

It is Day Two. To be exact, 26 days to go before I start the Lemtrada treatment. The post I shared yesterday was Day One, in case you missed it. 

I am not worried about the treatment itself. I'm worried about the side effects. I'm concerned the days after are going to be the hardest. I can't worry about the treatment, as it's out of my control. I don't know how my body is going to react to this, but I can control how it feels before hand. 

This morning I woke up with the most energy I have had in months. Unfortunately, this new found energy didn't go into exercise, but went in to work. Not such a bad thing. But the new healthy life style didn't really get a look in today -  oops. Maybe dinner time. I have managed to get some steps in. Although it wasn't through walking, just the usual dancing around the living room to an upbeat playlist which gets my day (and my brain) going. A bit of 90s dance going in the background as I write this. A little bit of C&C Music Factory for all those 90s lovers...

Being in control and knowing what will happen next is something I am sure most people can relate to. I am one of those planners. I like to know what's happening, and like to be able to plan ahead. Letting things "happen" is not something I like. Although I like the idea of letting it all happen, if I had to actually do it, I would probably fall apart. I'm an organiser, a planner. And not knowing how I am going to be affected by this medication is messing with my inner control freak. I don't like it. But I can't control it. What I can control is how I react to it mentally and be able to do as much as I can to avoid getting sick before and afterwards. The reaction to the drug is going to have to go with the flow... my inner control freak just screamed in agony with me admitting this!  

I watched a #Melrobbins clip yesterday about being able to solve problems. This also goes towards the ideas of control. Change what you can, and don't stress about the ones you can't.  Wise words, but who listens to wise words? I'm trying to. I really am. But when things go to custard, how often to we remind ourselves of these wise words. Whether by Mel or the Dalai Lama. Can I get you all to remind me of these when I'm suffering from the steroid crash and lack of energy levels? Say wise words and I'll probably throw something at you. Ha! 

I can be prepared for the days of infusion. This isn't an issue. I can have things to do, food, water, my beloved Precious (the iPad) and books. It will be like my own little holiday, without the sun, sand and sea. I am currently trying to teach myself how to crochet! Trying, being the operative word in that sentence. Something additional to do when I'm sitting for hours on end in the ward at the hospital. Oh the control! I may even take my work laptop with me. 

Luckily, I won't be alone in the ward, as other M.S. patients will be getting the same treatment as me in the same week.  We will all be in the same boat. At least we can share stories and experiences. Having people who have been through this is an absolute life line, however. Knowing what they have gone through definitely helps. Even the advice they have shared on what to take in and what the process is a godsend. The nurses haven't been as generous sharers on this. But they have a lot of patients to look after, so I'm guessing this isn't a priority. 

Day one... a patient's diary.

It's been a while. Actually, it's been longer than a while. And whilst I may have been in touch with some of you, not all of you know what's going on. And for my newer contacts, it's not been a while at all. 

In 27 days, 13 hours and 44 minutes, I will be checking in to Charing Cross hospital, here in London as a day patient. I will do this every day for five days. The reason behind this, I will be starting on a treatment for my M.S., which will hopefully, give me a new lease on life. 

Back in March 2017, I had a really bad relapse after moving house. Again, after moving house in May last year (2018) I had another one. Yes, you got it, I'm never moving again! (I know this idea makes my UK friends happy, and my antipodean ones, not so happy). Similar issues, with my legs having lost pretty much all motivation to feel. I could still move them, but what I had was dead leg. You know the feeling you get when you sit on them too long, and you've lost all feeling to them. Yeah, that's the one... in both legs. The second relapse has been the longest, and in all honesty, I still haven't quite recovered. So my Neurologist, in all his wisdom, suggested a new treatment. 

So it comes down to this. Monday 25 March, I will be going to get this new treatment. But I want to document everything which happens leading up to, during and the effects afterwards. There are others out there who have done this. They have even recorded videos of what they have gone through. I'm more of a writer. Although if it comes down to not having any energy to write at some stage, then I'll dictate to the husband and he can type it up. 

The treatment: Lemtrada. It used to be called Campath, and is a treatment used for Leukemia. On the first morning, as I understand it, I will be tested for any infections. If there's any infections, I will be treated with anti-biotics. Fingers crossed this doesn't happen. Then, it will be on to the infusion of steroids! After this, it's on to the good stuff, which is supposed to be killing off my immune system, via an infusion. 

Because M.S. is an auto-immune disease, my immune system attacks itself. The idea behind Lemtrada is it will reduce my immune system and hope it bounces back without it wanting to attack itself again and again. 

Time: The initial treatment is for five days. Then for three days the following year. Fingers, eyes, legs and everything else crossed, this will be enough and my self-attacking immune system slows right down on the inside front!  If not, there is a third year to look forward to, if this doesn't work. 

I have been told by the nurses at the hospital and all the people on the Facebook group I am in, I need to start on the listeria diet. Although the timeline for this one is a little hazy. So I've started already. Basically, the same as the 'pregnancy' diet to avoid any chance of listeria infection. Trying to stay away from anyone with a cold, flu or any other person/place where airborne viruses are rampant. Unfortunately, work won't quite allow that, so I have loaded up on Anti-bacterial hand wash, wipes and any thing else I can get my now, very clean hands on.  I'm wiping down the keyboard and desk now. Handles, phones and anything else which may have been infected. Overkill? Quite possibly. And after a couple of days of this, I know I'm going to be totally over it. Do I have to give up wine?? 

So Day One is nearly over. I haven't been very good. I should be eating well and staying active. Am sure Day Two will be better.