I'm just so frustrated with not knowing where I stand regarding treatment now with HSCT or not. So since the meeting on 18th March (regarding HSCT) I have had no update regarding what decision has been made if at all yet. Johnny (ms nurse) has been on leave due to the Easter break, and fair enough he is of course entitled to this. I emailed my neuro's sectary to see if I could find out that way. The sectary was very helpful and enquired with my neuro, but she was told to pass on the message that I should speak with Johnny when he is back from leave.
Now I'm thinking, I wonder what does that really mean?!? I'm driving myself nuts contemplating if that means my case for HSCT was rejected and it's back to plan A with Lemtrada treatment or does it just mean they think I'm still shocked and devastated at the idea of HSCT. The nuts thing is i'm not even sure what decision I am hoping for anymore. Having researched HSCT and I did a lot of work to 'come to terms' with this procedure and the chemo, it somehow feels like it could be a disappointing waste of time and a bit of a let down to not have this opportunity.
I just wish there was anybody that would be able to fill me in, in the absence of Johnny. It's quite unfair, maybe they don't realise my days are filled thinking of this as soon as my mind isn't busy with doing stuff I have to do in usual daily life.
What's even more frustrating is that I wasn't the one to go digging for this treatment, its was my neuro's suggestion to convince me of having a relapse and switch to HSCT, I'm so angry now the neuro won't let me know how it went and now just passes the buck for Johnny to handle whatever the outcome is.
Rant over. Fingers crossed I will be able to update tis bad mood on Tuesday (still 5 more days!) :-(
Wednesday, 30 March 2016
Thursday, 24 March 2016
24 March 2016 - 23 weeks post and things are looking up (I think)
Yesterday I traveled to Germany to spend Easter with my boyfriend and some of his friends. I was dreading going to the airport and doing all the walking through the terminal, which is tiring usually, but I struggle with the rush of things and knowing there will be times where I have no choice but to stand (in ques) or walk unknown distances (to the departure gate).
The last time I was at the airport was when I was returning from Germany at the end of January and this was when I was really suffering after my 'duloxetine adverse event adventure' / relapse (depends who's opinion you take) so the airport was holding quite a bit of fear and anxiety in my memory.
But anyway the airport went better than expected, not even so much a struggle but my legs were tired. I built the guts to board the plane by approaching the priority boarding que and asking if I could board because I struggle to stand for longer periods of time because of my MS … the lady at the desk was lovely and said of course not a problem … she then continues to expand on her sympathy and understanding by telling me how her nephew has autism and he has issues with standing and waiting and needs to face the same struggles in situations like this … on one hand I thought hmm thanks for comparing my disability to autism, but really I knew she meant well, She even came down and found me in the air bridge where there was a que just prior to getting into the plane and asked people to move to one side so that I could board. This was lovely but I could have died from the embarrassment! Then once I was on the plane the guy behind me offered to lift my heavy hand-baggage into the overhead locker for me (which was also touching and very lovely).
In conclusion despite the dramas that could have been, I was actually alright and I made it. Overall I can probably think this went even better than usual - Lemtrada (1) MS (nil) :-)
My walking is better which means I'm working and walking harder than since even a while before I was on Lemtrada. At the end of each day I'm tired, but on reflection that's because I'm pushing myself more and more each day.
So I haven't talked much about work on here but in summary after Lentrada I was off work until mid December. Since January I had been having gradual return to work and since February I have been working full time from home, gradually building time worked back in the office. Now I'm back to nearly normal and overtime remains a part of my life again.
The last time I was at the airport was when I was returning from Germany at the end of January and this was when I was really suffering after my 'duloxetine adverse event adventure' / relapse (depends who's opinion you take) so the airport was holding quite a bit of fear and anxiety in my memory.
But anyway the airport went better than expected, not even so much a struggle but my legs were tired. I built the guts to board the plane by approaching the priority boarding que and asking if I could board because I struggle to stand for longer periods of time because of my MS … the lady at the desk was lovely and said of course not a problem … she then continues to expand on her sympathy and understanding by telling me how her nephew has autism and he has issues with standing and waiting and needs to face the same struggles in situations like this … on one hand I thought hmm thanks for comparing my disability to autism, but really I knew she meant well, She even came down and found me in the air bridge where there was a que just prior to getting into the plane and asked people to move to one side so that I could board. This was lovely but I could have died from the embarrassment! Then once I was on the plane the guy behind me offered to lift my heavy hand-baggage into the overhead locker for me (which was also touching and very lovely).
In conclusion despite the dramas that could have been, I was actually alright and I made it. Overall I can probably think this went even better than usual - Lemtrada (1) MS (nil) :-)
My walking is better which means I'm working and walking harder than since even a while before I was on Lemtrada. At the end of each day I'm tired, but on reflection that's because I'm pushing myself more and more each day.
So I haven't talked much about work on here but in summary after Lentrada I was off work until mid December. Since January I had been having gradual return to work and since February I have been working full time from home, gradually building time worked back in the office. Now I'm back to nearly normal and overtime remains a part of my life again.
Wednesday, 9 March 2016
09 March 2016 (6 months post) - I'm not gonna make it to round 2! referred for HSCT instead?
So I saw my neurologist yesterday to review my 'urgent' MRI from a couple of weeks ago. Actually this appointment wasn't exactly what I had expected. My neurologist compared my latest MRI to a n MRI from 3 years ago (which is probably close to where I was still on Tysabri and it was still working). The comparison between these two scans is obvious, clearly more inflammation now compared to back then, even though al the reports analysed them as stable when MRIs were only being compared to the last scan. Anyway to cut a long story short my neurologist is referring me for HSCT because in his words 'I'm supposed to be making you feel better, but I haven't done that yet' ... which isn't strictly true, I have felt worse than I do now. I know his hurry to do this is just in case the 'blip' I experienced in January reflects the fact that I'm still at risk of disease activity despite Lemtrada, and the longer the stem cell therapy is delayed, the greater the risk of the treatment being less optimal. As I'm fully mobile and my symptoms all have periods of worsening and then getting better (RRMS) I get the impression that this means I'm the ideal candidate for this therapy.
The issues I'm having contemplating this road of treatment:
*Scared of actually dying
*Fear and everyday anxiety contemplating risk of infection
*Living but battling being really sick during treatment
*The sacrifice of my current ability for a chance at a long term gain
* Pressures this will put on my family and friends
*Fear of loneliness and social isolation
The stupid thing is I am so instantly upset about this whole situation, but I still have a way to go before actually getting this treatment. My case will be presented at a meeting of clinicians next week, then I'm not really sure what happens next. I was told I could be looking at treatment by the summer (which doesn't really seem so far away).
I'm still a bit upset that I don't seem to be set on the road for a Lemtrada success story, even if it can't really be defined that Lemtrada didn't work for me, or was my treatment intervened too quickly to really judge this?
So stunned and a bit in denial that I'm not a Lemtrada success story. Is weird I need to just get on with my life like I still planned to on Monday just passed, but at the same time I'm burying my head in research papers for HSCT to try and assess the risk and convince myself that I will be OK and maybe this is an opportunity not to be missed!?!? :-s
The issues I'm having contemplating this road of treatment:
*Scared of actually dying
*Fear and everyday anxiety contemplating risk of infection
*Living but battling being really sick during treatment
*The sacrifice of my current ability for a chance at a long term gain
* Pressures this will put on my family and friends
*Fear of loneliness and social isolation
The stupid thing is I am so instantly upset about this whole situation, but I still have a way to go before actually getting this treatment. My case will be presented at a meeting of clinicians next week, then I'm not really sure what happens next. I was told I could be looking at treatment by the summer (which doesn't really seem so far away).
I'm still a bit upset that I don't seem to be set on the road for a Lemtrada success story, even if it can't really be defined that Lemtrada didn't work for me, or was my treatment intervened too quickly to really judge this?
So stunned and a bit in denial that I'm not a Lemtrada success story. Is weird I need to just get on with my life like I still planned to on Monday just passed, but at the same time I'm burying my head in research papers for HSCT to try and assess the risk and convince myself that I will be OK and maybe this is an opportunity not to be missed!?!? :-s
Friday, 4 March 2016
04 March 2016 - pending MRI review, but feeling suddenly 'more well'
Following Lemtrada in September things were slowly but surely developing into better things. I haven't experienced an overnight miracle, but I was convinced there were tiny little things improving.
My walking wasn't perfectly normal but I was feeling the benefits of weekly physiotherapy and having greater awareness of how my posture should be and how to strengthen the core tummy muscles so that I'm not so wobbly. Regular exercise was benefiting me physically and emotionally, admittedly I wasn't doing so much, but I'd become so weak (too much sitting around) that even little muscle exercises were tiring. Because I have a full range of mobility it's easy to overestimate in your mind what you are able to still do. Avoidance never helped anybody and I just need to get my priorities straight and throw myself into working at my fitness.
Its amazing how much difference a good mood can make to my MS sometimes. I've always promoted the strength of positive mental attitude (especially since my diagnosis)!
My walking wasn't perfectly normal but I was feeling the benefits of weekly physiotherapy and having greater awareness of how my posture should be and how to strengthen the core tummy muscles so that I'm not so wobbly. Regular exercise was benefiting me physically and emotionally, admittedly I wasn't doing so much, but I'd become so weak (too much sitting around) that even little muscle exercises were tiring. Because I have a full range of mobility it's easy to overestimate in your mind what you are able to still do. Avoidance never helped anybody and I just need to get my priorities straight and throw myself into working at my fitness.
Its amazing how much difference a good mood can make to my MS sometimes. I've always promoted the strength of positive mental attitude (especially since my diagnosis)!
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