April into May.

The past few weeks have been full of highs and lows.
It started off with the London Marathon. As most of you will probably know, my boyfriend, Josh ran the marathon for PSC Support on April 13th. It was such a good day. Some of mine and Josh’s family met up with a few other people from the PSC Support group and made our way to different points of the race throughout the day to try and spot Josh and cheer him on. We managed to catch him at mile 7 and mile 18. It was a lot of fun and really good to spend the day getting to know everyone and sharing our stories and experiences with PSC. Although I spend a lot of time talking to people from the support group online, meeting them in person is completely different and really comforting.
Josh spent months before the marathon training really hard, raising awareness of PSC and organ donation and of course raising money for the charity. It’s been amazing to see the support that he’s received throughout and I cannot thank the people who have sponsored him or helped raise awareness enough, it really will make so much difference to the charity and PSC patients all over the UK.
Josh ran the marathon in 4 hours 18 minutes, I have never been more proud or felt luckier to have such support around me. I don’t think I’ll ever be able to explain exactly what it means to me. We still haven’t got a grand total of how much Josh has managed to raise as we are still collecting sponsor money but we know that it is round about £4,000. An incredible amount that will all go towards helping support people affected by Primary Sclerosing Cholangitis and providing funding for more research into the disease which is desperately needed.
THANK YOU TO EVERYONE WHO HAS DONTATED!
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Marathon03  Marathon08 Marathon18  1511457_10152344949185196_6013028952061279059_n 012f82dfef0f4cb25ca14bc48815d8d52f83ec8b6c 10154945_10151992292337327_6923123045321039597_n  10014547_10154036583810311_2980852558784754723_n

 After the marathon, I spent a good few days resting and regaining energy after such a busy weekend. During the following weeks I actually felt the best I have felt in a very long time. All my symptoms were much more manageable than they have been, especially the fatigue. I have been able to do more than usual and get out and about more often without completely wearing myself out. After being at my worst throughout February and most of March, this was a very welcomed change! I tried to make the most of it by making lots of plans and being as active as possible.
Both my April and May clinic appointments have been positive too, no real changes to my condition, my jaundice has actually decreased a bit so I’m closer to my pasty-skinned self than I have been in a while! The only difference is that I’ve been experiencing much more frequent and intense pain in my upper right side. This is probably just a normal part of what’s going on with my liver but I’m due an MRCP scan this month anyway so they will be able to see if there’s anything significant that could be causing the pain.
When I feel well like this, it’s easy to stay positive and not get anxious about the time I have spent/will spend on the waiting list. It’s easier to put it to the back of my mind and feel confident about how things are going to turn out.
This good spell lasted about 3 weeks until last week when I finally pushed myself to the limit and completely burnt out! This week has been a completely different story and I’ve been paying for overdoing it. I’ve spent all week at home, sleeping a lot and nursing a cold. I’ve learn my lesson. Although I may feel okay or at my best, I still have to remember to rest. I definitely cannot have full days every week, I have to remember to get the balance right and allow for a day to recover after a busy day.

So as well as the ups and downs of my physical health, It’s also been a bit of a funny few weeks emotionally as well. Obviously with feeling so well I was in very good spirits and very content with everything, I couldn’t even remember the last time I had a bit of a panic or felt overwhelmed with everything. Like I said, it’s much easier for me to feel confident with my health and the possible outcome of everything when my condition is stable and I’m able to get on with my life. It’s not a matter of putting all the negative possibilities and risks to the back of my mind, it’s more to do with the fact that they seem much more irrelevant to me when things are good. I begin to feel comfortable with where I am and how things are going, I almost trick myself into believing that it’s going to last forever and I’ll always feel that well but it doesn’t take much to remind me that this isn’t the case and that things can change very quickly with PSC. Over the past couple weeks there has been some terrible news in the PSC community and it’s hard not to be shaken by it. Lives have been lost to this horrible disease and the time frame in which things turned around for these people is unbelievable. It’s nothing new, of course we hear terrible news like this often and it always comes as a slap across the face and a stark reminder of what we’re fighting against every single day. People go from feeling well and living normal lives to their PSC progressing so quickly that in a matter of weeks they are gone. You may have heard the very sad news earlier this week of the passing of Elena Baltacha, the former British tennis champion. Elena had PSC for most of her adult life and was diagnosed with liver cancer in March this year. On Sunday morning, just a few weeks after her cancer was diagnosed she sadly passed away. Despite being diagnosed with PSC at the age of 19, she lead a very full life and accomplished so much in her career, she never let it stop her and she remained fit and healthy for so many years. It was so shocking to hear that she passed away. She was and still is an inspiration to so many PSC patients. My friend and fellow PSCer, Jess has written a really great post as a tribute to Elena Baltacha which is well worth a read. You can find it right here: http://cressica.wordpress.com/2014/05/08/elena-baltacha-a-small-tribute-to-one-psc-er-from-another-2/
Martine Walmsley, Chair of the Trustees at PSC Support has also written a statement following the news, highlighting the fact that there is so much that NEEDS to be done in terms of research to meet the needs of PSC patients. We need improved patient services, there needs to be clearer strategies in place when it comes to managing PSC patients and ultimately we need to find better treatments and a CURE!
http://www.pscsupport.org.uk/news/elena-baltacha-dies-liver-cancer

It’s safe to say that with all this happening over the past couple weeks my positive attitude has taken a bit of a knock. The unpredictable nature of PSC is probably the scariest thing about the disease. I’ve experienced it myself in the past, most poignantly last year when I was hospitalised after suffering a huge variceal haemorrhage. Just three weeks before that, I was at my usual check up appointment with my gastro doctor where he told me that my blood tests and latest scans all showed no changes or signs of detrition, everything was still looking okay and I should be fine to go ahead and plan my next trip to Canada later that year, there shouldn’t be any reason why I wouldn’t be able to go. Obviously three weeks later, being rushed to A&E in an ambulance came as a bit of a shock and a few days later when the doctors sat around my hospital bed telling me that my disease had progressed significantly and they weren’t sure what needed to happen next, I realised that perhaps my plans to spend a year in Canada would have to take a back seat. So yes, the unpredictability of PSC isn’t news to me but every time I hear stories of people going from ‘fine’ to critical in a matter of weeks I am completely thrown back. No matter how many times it happens, no matter how many stories I hear I am still completely frightened by it. That’s when I start to panic about the time I could spend waiting on the list. The longer I’m waiting, the higher the risk of something bad happening and it’s hard to ignore that at times like this. I know I have to remain positive and remember all the people who have had their transplants and are doing so well now, I always remind myself of those stories when it gets scary and difficult but it’s not always easy.
I’ve been on the list for ten months now so going by the average waiting time, I’m about half way there. A couple of weeks ago I felt fine with that, I could cope with the thought that I could be waiting another ten months or more until I get ‘the call’ but now whilst I’m in this panic mode I just don’t know how I’ll cope with waiting that long. I know that I will cope, of course I will, I can’t change it or do anything about it so I can either cope with it or fall to pieces. That’s the thing about being in this situation, It’s completely out of my hands, there is nothing I can do to control when it will happen or the outcome of it when it does happen but I can control how I deal with it. I can either be okay with it and just take each day as it comes or I can let it overwhelm me, spend every day worrying and wondering what’s going to happen and let it take over my whole life. I choose the first option.
So I may be frightened and the moment, I might be in panic mode but I wont let it last. I’ll continue to take each day as it comes and enjoy something from every single day, no matter how small it may be.
I hope that soon people wont have to wait so long on the transplant list, worrying if their call will come in time or not. That is why I ask everyone to consider signing up to be an organ donor –
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Thanks for reading x

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One thought on “April into May.

  1. Maxine, first of all I apologize for being MIA for awhile. I’ve been dealing with issues. I have just finished reading your posts and again I am very impressed with and proud of you. You are such an inspiration to so many. I’m very glad that you were feeling so good for awhile. As you said you have to remember to pace yourself though. It’s so hard to do when you don’t feel well or have any energy for so long then all of the sudden you do. We try to play catch up and do and enjoy as much as we can before the feeling goes away. That just sets us back. We all know that yet we all continue to do it. lol such is life. I’m very happy that you had that time.

    Congrats to Josh. He seems like such a wonderful and caring young man. You are very lucky to have him as he is very lucky to have you.

    I’m so sorry about the losses. Those are so hard to take. It does set us back a bit because it reminds us of our own mortality and what we are fighting. But I know you can not only do this, but do it with dignity, class and strength as you have thus far.

    You are still and will continue to be in my thoughts and prayers. I pray for you each night.

    Shelley

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