ITP update #2

This Monday I went for my specialist appointment at he hospital.  I've got to be honest I went with high expectations of getting some more clarity as to what the next treatment was going to be.  This drug that they were going to apply to put me on.

As I sat in his room he told me that he was pleased that the platelet count was over 30 and that we could leave it now for a while to see how things will progress.  At this point I asked about playing badminton and cycling, after al he had said he was happy with my count.  At this he scoffed and said that I should still steer clear of those things!  He also said that the drug that had been suggested the week before was not actually the next line of treatment, the next line of treatment was to remove my spleen.  ( I thought that the ritoxamab was instead of this.)

He also sent me for another blood test to check for some stomach bug that may cause ITP to come on.  in fact this specialist was surprised I hadn't been checked for this already.

So in all it was a visit that left me with little clarity at all.  I see a specialist again in 4 weeks time to see how the count is doing, as they are leaving time for the ritoxamab to work. In the meantime I remain on a low dosage of steroids reducing slowly over a longer period than was first stated to reduce the side effects of withdrawal.

The only thing that did bring some clarity was some understanding as to why I feel tired most of the time.  He was very clear that the reason for this is because of the low platelet count.  he is the first of the doctors and nurses who have treated me to make this clear to me, it's not the steroids or any other treatments, it's the fact I have low platelets.

The last thing I want is for anyone to read this is as me moaning.  This must be such a hard thing to treat as there is no clear cause and I know that it is all trial and error and having to wait.  I have been generally looked after so well and I now have to get used to the long haul care of a people who are stretched to the limits.  My prayers are with the medical staff and I ask that yours would be too.

Attitudes of a Leader @ RFC #2

2: Embracing generosity

Generosity is a thing we practice but starts as a heart attitude.  Generosity basically says I am open handed with what I have.  Of course it does have financial implications.  As leaders at RFC we know that we are given the great responsibility of being stewards of the resources that God has given to us and we take that seriously and with great joy.  When we lead others into gift days and regular giving we can only do that if we have a positive attitude ourselves, an attitude that says this is not always easy or convenient, but is a blessing to us that helps us to display our faith and trust in Jesus.

This has time implications. Leadership often means that we will be those who go the extra mile and put in the extra hours and that takes a positive attitude as time is precious and there is so much we can do with it.  With a generous attitude we can guide against bitterness and thinking others should be doing more.

However embracing generosity also means that we are generous with our words, with praise with affirmation and with encouragement.  We can be so keen to get the job done that we forget to take time to congratulate and recognise effort, and this needs to be done far more than we think.

Anticipating meeting with God

This Saturday the RFC Alpha course travels to Beaconsfield for the Alpha Day Away. There are 24 of us travelling over and we look forward to a time where we will further build relationships with each other and eat good food.  

However I am also in anticipation that we are going to encounter God powerfully. I am believing that the Holy Spirit will change hearts and minds as he comes and meets with individuals just as he did in the home of Cornelius in Acts 10.  I am also looking forward to meeting him again personally as I speak through three sessions and lay hands on those who come forward for prayer.  

Our God is a Father who loves to see his family grow and I am believing that Saturday will be a day of growth!  Please pray for salvation and tangible experiences of meeting with our God, that get people moving further on in their journey with Jesus.

 

Latest news from the ITP journey

So I have had a couple of blood tests since first I blogged about the ITP thing.  One recorded a drop to 26 and the latest has recorded a rise whereby the platelet count is currently at 32.  this is still a long way off 150!

Whilst on the phone to the hospital they told me to reduce my steroid intake again which is good and there now seems to be an end to that treatment and they also told me that they are looking into another line of treatment that will boost production of my platelets.  This will either be by tablet or injection.  I guess I will have to wait until the specialist appointment on Monday to know whether they will pursue this course of treatment with me or not.

In the meantime please pray for energy levels and clarity of thought as I do all I need to do this week.

Attitudes of a leaders @ RFC #1

You may have seen from Sean's blog that he has been going through his session notes from the leadership summit that we had back in September.  I too have been asked for my session notes and will put them up here as I try to get the blog back on track!

John Maxwell argues that our attitude is our greatest asset in leadership, because being a leader is to bring influence and therefore our attitude affects the attitudes of all those around us.

At RFC we are people who want tp work at being those who have positive attitudes as we believe that is what it is to follow Jesus, particularly in leadership.

1: Erring to grace

The other way of looking at this is to say how do we respond when someone messes up around us or doesn't quite do it how we would do it and therefore maybe not as well as we might think we may have done?

When someone lets you down on team by not turning up, when you feel you’re being asked again to go again, when someone doesn't do what they said they would or what you have asked them to – how do we respond? 

We could go straight for the behaviour.  This is the way to is done, this is what you said, this just isn't good enough!  The problem with this is that firstly we are a volunteer organisation.  As much as we need people to follow through on what they say they will do, they will mess up just like us!  

The second thing to remember here is that God doesn't treat us like this. He walks with us in our behaviours bearing with them training and teaching us, that we might become more like him.

Erring to grace doesn't mean we shrug our shoulders and ignore the fact that things are not going well, it means that we choose to work with the person to help them grow and that could mean releasing them to go do something else.

Within church leadership, grace is paramount. Grace says there’s room to get it wrong, grace says there is room to do it differently, grace says there is room to grow, and grace says we deal with you as an individual.

That's it for this week, next week we'll look at Embracing Generosity

ITP is...

Something I had never heard of until 3rd September. It transpires  that it is a reasonably rare blood disorder where your immune system attacks the bits of your blood that make it clot.  These are called platelets and they should be at round 150 in a healthy person.  When my blood was tested on 2nd September my platelet count was 4.  Low eh!

This kick started a hospital chain reaction: 2 phone calls from the on call specialist, an admission to A&E, a 7 hour wait to see a doctor, admitted to the Clinical Decision Unit for three hours sleep before a day of observations and blood tests.

When I did see the specialist on the 3rd, he could at least rule out, leukaemia!  I didn't even know it could be leukaemia! Phew!  However I was also told not to cycle or play badminton or do anything to strenuous in case i had an internal bleed or of course an external one!

Since that time I have had many blood tests and have got very used to the 'sharp scratch' that I am always readied with. I have got used to some medical jargon and also being treated really well by excellent health care professionals.  I have had two different drugs pumped into me via infusions, the latest of which we are till waiting to see if it will have the desired effect.

I have told the story many times and I have even taken to using Face Book to update people as to the latest status reports. I even wonder whether Bruce Forsyth may start a new game where he can do higher and lower and just call it 'The Platelet Count'!

Today I sit here not knowing what has caused me to have ITP and I do not know when the count will be normal and I do not know if it will stay normal once it has to to that place.  I generally feel fine, but just get very tired very quickly. The steroids I have been on are  the cause of this as well as the increased appetite, the irritability, and the facial puffiness that are recognisable side effects (honest governor).  It's also been an emotionally tiring time.  Not knowing what will happen next and just riding the rollercoaster is an exhausting journey; not being able to do things that you really enjoy, in case you hurt yourself unnecessarily is frustrating; being irritable with the ones you love the most is upsetting;  and just choosing positivity in itself can be a battle.

In all this we choose, as a family, to cling to God, to thank him that this is not cancer or anything else more severe; we thank him that we can continue pretty much as normal in family life; we thank him for a great church who has stood in prayer support; we thank him for a great job which has shown flexibility with random hospital appointments and procedures; we thank him for family and friends who have been a great support; and we thank him that we walk this journey of faith with Him.

Encouraging feedback is always nice!!!

This is an entry posted on the RFC student page on Face Book.  It's from an oversees student who saw that there was a home here for her.  I'm so glad to be part of a church like this!

Hi Reading Family Church! Most of you wont know me but for those of you that do, I just want to take the time to thank you for all the warmth and hospitality that you have extended to me over the last year that I was in Reading finishing my final year of LLB Law! 

I am currently doing a Postgrad in Cardiff, am in the midst of searching for a church to settle into, but RFC was definitely homeee for me, the whole of last year! I am sooo thankful to have met and known alot of reaaaally great friends from there, and with whom i'm still in touch with until today!  (you know who you are :P) 

Thank you Student Team for organising so many student lunches and having different families/couples hosts us for Sunday lunches! If you are new, trust me! You wont regret joining those student events! Id say, its at those smaller gatherings that i got to know people on a more personal level and have the privilege of enjoying a good meal with  

Sorry for this long post, should have done it earlier, but finally got around to doing it!  God bless, folks!  xx

Let's be encouraged and keep welcoming and extending warmth to all who we come across, we just don't always know the impact it has!