I'm Back! Day +13 and its been a few days of Neutropenic Sepsis HELL!

Well I have been very poorly and not quite out of the woods yet but actually finally able to move my arms and pick up my computer, which I am seeing as a good sign! 


Basically the last few days I went into a stage which is common called Neutropenia Sepsis where you get an infection as you are Neutropenic ( have low neutrophils/white cells).  It has manifested in me in an infection in the lower half of both my lungs and I am being treated with a multitude of antibiotics.  I am also permanently on oxygen now too as I can't breath too easily due to the infection.


I've pretty much had a temperature every day and night, literally lolling from one to the next which is not nice.
They've started to settle now too and I find myself back in the land of the living again.  I swear I was hallucinating, having conversations with people who where not here, very strange dreams.


Yesterday my hair started falling out.  As I mentioned before this is not an issue for me but it was a shock reaching up and pulling a clump off of hair out as I was adamant mine wasn't going to fall out, like it had taken too long or something. Anyway the nurses are going to shave it for me but just have to check whether my platelets are high enough at the moment.


So....I'll end on some good new....may as well....my new cells have engrafted and my white cell count has started to come back up.

Day +7 and I'm filling up like a balloon....

...and by that I mean I've put on 4kg in a day... in water retention! One of the side affects of the chemo is that it kills the cells in the mouth and gut (nice!) and so I do not absorb my food/nutrients and water properly.  Hence the nutritionalist coming round to give me advice on what to eat...personally I think she should spend her time finding some edible food in this hospital before preaching to me...but that, they say, is another story...


It means that I am technically dehydrated, even though I drink lots of water so last night was awake all night being given 2 litres of fluids (2 bags) through my hickman line, each bag taking 8hrs to transfuse, that, on top of the two bags of blood I had today and the various other drugs I am given through my line adds up to a lot of fluid....boy can I feel it now.  My hands hurt, my ring is stuck on my finger as they are swollen up, my face hurts like the skin is being stretched across it...so although I don't want what is to come, I think they are going to give me a lovely little drug which makes you wee all the excess water out...oh another night of no sleep for me! 


A few other new things...it's almost exciting to be able to talk about new stuff happening in my little room....(almost!).  I have had my first GCSF injection today, this is a growth factor that I will have injected into my stomach for 7 days to try and help stimulate the new cells.  My mum has found me a great snack that I love...Del Monte Fruit bites...they are like healthy sweets, yummo.  Rich has been tasked with purchasing me lots more for when he visits on Saturday!   I have got round to tasting the beef and tomato pot noodle and was pleasantly surprised...yes they are still my main lunchtime snack.   Dinners have improved because I now eat ready meals that Rich and Mum bring me.  I have had a visit from the occupational health adviser who has asked me to do 2 lots of 10 minutes a day on these weird freestanding pedals...you sit in the chair and pedal and I have to record how I feel etc...  Sorry if I seem ungrateful but I am 31, I know how I feel, I know how to exercise, I know I will feel weak when I leave hospital, I really don't think 20 mins a day on these pedals will change my fitness dramatically!...Linking in with the nutritionalist above...I also know what I like to eat, I know about calorie intake, I could probably write a book on diet, food and healthy eating....Big Big Sigh......


Can you tell I am a right grump today...I swear this lack of sleep is making me ill....how ironic!


On a positive note I have been able to skype with my brother in Oz and see my lovely nephew Robson and the new arrival little Harry...always a way to perk me up...they are basking in 36 degree heat...I added that to make you all feel jealous, my climate controlled room means I have no idea what the weather is like outside!  I have also just spoken to Rich which always makes me happy.


Until next time... I'm off to sleep...oh I must stop with these jokes! ha ha....

People...

So many people have been involved in this whole process, I almost can't comprehend it!  I'll list some: Doctors, Consultants, Nurses, Haematology Outpatient staff etc... in Kings College Hospital, Transplant team at Kings and at Hamburg Hospital, The Anthony Nolan Trust, blood donors, Doctors, nurses, outpatient staff at Northampton hospital, fertility team at Guys St Thomas Hospital, couriers who bring my now specially matched blood products to the hospital...Renal doctors, heart doctors, x-ray staff, my donor, the person who brought the cells over on the plane from Hamburg...and loads more....

Then there are the people this has, what is the right word, affected... or at least touched in some way...my amazing friends, wonderful family, work colleagues, my housemate, Rich, his family, my sister in laws family, mums close friends, my donors family etc...

All this for me...crazy stuff to get your head around really.

I know it goes without saying in a way but, I couldn't have got through this without the very special people I have around me.  In essence I am talking about family, Rich and friends but also some special nurses who I see regularly.  I know how much this has affected their lives too and that makes me feel bad sometimes, I don't want to inflict this on them but they (and they know who they are!) have been incredible in so many different ways, some have been exceptional.   

I don't have a vast array of friends, my family is very small but they are pure quality! ha ha.... they are truly the best.  I can never thank them enough but I can say that I am there for them as much and more.

We busily go through life taking these kinds of friendships for granted I think, assuming that someone is always there, maybe not making so much effort or getting wrapped up in other things but I pride myself on being a good friend and to always make time no matter what is going on in my life.  It is at times like these when you need these people that you find out who your true friends are.  This is a time I want to say thank you to those people and to say I am here for you no matter what.

Life is too short and can be taken in an instant.  Without all the people I've mentioned above I would not be here.  The relationships we make should be things we cherish so much more than we do, it is time we maybe all acknowledged that a bit more and maybe made a bit more effort...I am sure we all have someone we know we need to do that for.


I'm going to finish with some pics of two very very special people in my life who popped in to see me this week! 

 

Day +4 Blues...

So I officially on Day +4, which basically means I am 4 days post transplant and this whole thing is so very hard...  It is a bit of a waiting game to see whether the donor stem cells start to make new blood cells in me.  Just so everyone know, stem cells are basically very new cells which we (well most people!) make in the bone marrow, they then grow into the different blood cells so some will become red blood cells, some platelets, some white etc...


The idea of the transplant is that the chemo has got rid of the abnormal cells in my marrow and made room for these new ones to hopefully start producing blood for me as my own cells.


So as you know I am a pretty positive as a person, I've always tried to be positive about this whole experience but I do have little blips and it seems I am going through one of those right now.  I seem to be having weird nightmares each night and they centre around either people trying to hurt me, try to deceive me or not help me when I need it.


I feel incredibly scared at the moment...what if it doesn't work, have I got through it to easily, I mean it hasn't been easy but I know It could have been a lot worse! Does that mean something will go wrong from now?  I know these are kind of irrational throughts.  Yes there are percentage chances it won't work etc... and I mentioned those before but there is no evidence at the moment that I have been informed of to suggest this.


I think It is dawning on me that everything, the whole rest of my life, my whole remaining alive on this planet is reliant on this working and that is bloody scary.


A few weeks ago I actually allowed myself to start thinking properly of the future, something I have not done or allowed myself to do for a long while, rather I have lived day by day, week by week not knowing what lay ahead, just being grateful that I was still here really.  It was a wonderful thing to think about next year, planning (loosely!) a trip to visit my brother, Tara and my nephews in Australia in a years time.  Thinking about trips with friends and allowing myself to picture ahead with Rich.


Maybe that is why I am scared now, because I have finally allowed myself to think of the future and I am so worried I won't get there. By allowing these thoughts to enter my head and get excited about them I now want them so badly.  I am a little angry with myself for doing this as I am always so careful to try and protect myself really.  Maybe I just need to learn to relax about it all now, I mean I have had the treatment and I am doing ok.  There is a very long road to travel before I am classed as better but I am on that road after all.  For now though I feel down and so terribly emotional.  I see my friends, family, boyfriend and they mean so much to me I just want to cry at the drop of a hat right now.  I don't know I suppose this is all part of the process, I can't be positive perky Sally all the time.


I think I just need to write another blog about hospital food, it will either make me laugh or take me further into the depths of despair!

Today is the day....day 0 PART 2!

This is just a small addition as I have now had the cells.  They were actually from Hamburg and someone took them on the flight from there to Heathrow and then they were sped by car to the hospital where my nurse met them.  Crazy stuff like on TV!  I had the nurse in with me the whole time as you can have a reaction to them...I didn't thankfully...I've had those kind of reactions before and they are not pleasant.


They gave med pre medications, piriton, hydro cortisone, anti sickness etc... and did the first 10 mins very slowly to check for the reaction and them sped them up to get them in as fast as possible.  My blood pressure, temperature, pulse and sats were done every 15 minutes and will be done every hour or so through the night now.


When they first brought them in my room to show me I felt weird, like I didn't want them to go in my body...how strange I mean I have bloods etc... all the time.  I suppose it is more to do with the fact it can make me feel ill.  The mind plays funny tricks and I got a bit shaky at the thought of it all, like I was nervous but the nurses are great here and put me at ease.

So that is it....they are all in, two bags totaling about 700ml and now we wait...this next week is one of my most critical.  The |chemo will fully kick in, I am already neutropaenic and have no immune system at all now, and the cells will find their way to my bone marrow and hopefully take and mature into my various blood cells from there...


I just have to say thank you so much for, hopefully, saving my life my 25year old male donor from Hamburg, I salute you and your kindness.

Today is the day....day 0

So today is what they call Day 0 and I get my donor cells.


I've read and been told it is a bit of an anti-climax as effectively they are just put us as an infusion, you don't feel anything etc...but this is a massive day and hopefully the first day of the rest of my life.


I've been thinking a lot about life lately and where I want mine to go from here and I have ideas...not ones I am going to share right now though! ha ha...  Since I first became Ill my opinions on life have changed a lot and I suppose can be wrapped up in the saying 'Life is too short'... but it really is so much more than that.  We only have one life, it is precious and to waste even a second is wrong.  We should be grateful to be here, to ensure we live our lives to the best of our ability, to make ourselves and those we care about around us happy and to not live with regrets.  I have taken responsibility for my life which I think lacks in a lot of people.  I am responsible for where I live, for paying my way, for my happiness etc...


Don't get me wrong I know it is not easy all of this but we can be responsible for the direction we take and only we can make changes to our lives.  I quickly get angry with people who moan about things, well that sounds harsh I am a good friend and I listen and give advice of course and always have time for any problems my friends have, it is different to that, it is people who blame their issues on others or don't ever make a change.


Wow I am blabbing on now...all I mean is that life is precious and all to short and we should remember that on a daily basis.


So it is 9.45pm and I am about to get my cells, shouldn't take much more than an hour or so.  They were later as they have come from America (we think) as they were still on the plane at about 5pm!  i always knew it was either America or Germany.  So here goes..... the start of the rest of my life...

Pre - Transplant Stuff....

So when it has been decided that you are to have a Bone Marrow Transplant it starts off a whole sequence of events and tests etc that need doing and I will attempt to remember them all here...


I came to see Professor Judith Marsh, my consultant of 8 years, here at Kings College Hospital for a check up, knowing that I was needing platelets etc.. and she said those words...'Sally I think the time has come to start looking for a donor for you and doing a transplant...how do you feel about that'...


Well how did I feel about that...actually as scary as it sounded, it was also a relief to have some actual action and  more certainty about what was happening.  Holding on and waiting for results and waiting to see what my consultant would say this time was very stressful.


So there we go it meant I had some special blood tests and they were sent to the Anthony Nolan Trust who manage one donor register.  It was then a waiting game to see what they came back with, of course there was always a chance that they wouldn't find a match at all...I tried not to think about that.  In the meantime I was having what they call supportive therapy in the form of platelet transfusions and blood transfusions.


I was still working full time so I fitted them around that.  I was tired and generally didn't do much when  got home after work but managed a relatively normal life.  I suppose I felt that was the logical thing to do, just carry on.  I know friends and family were worried I was doing too much but at the time 'financial issues' were my main concern...I couldn't afford to start my sick leave too early, that was just a fact I had to deal with.  I will talk more about money and sick entitlements (or your lack of them if you a hard working citizen!) in a later blog post...can you sense I have a lot to say about it!!! ha ha...


At my next appointment with Prof Marsh she told me that she had managed to get PCT approval for me to have the transplant down in London.  Basically my PCT (Primary Care Trust) had to say they would allocate funds to me being treated in London as opposed to my local transplant hospital which is Leicester, and likewise the London PCT for Kings College Hospital also had to agree that they would help pay for it too even though I don't live in London...Postcode lottery and all that! So that was decided I was coming to London.  This threw up stresses in my mind about people being able to visit, mum having to spend loads of money on accommodation etc... but in the end I had to not think of everybody else and accept this was the best place for me to be.


I was also then told that they had found 3 preliminary matches...3...on the one hand I was shocked there were not more to be honest, but on the other very lucky to have 3!  All I knew was that one was from America and the other two from Europe (one being Germany).  After the final testing which involves matching 10 important proteins I was told they had chosen one that had turned out to be the best unrelated donor you could get, a 10/10 match.  There are around 370,000 people on the Anthony Nolan Bone Marrow Donor Register.


The next phase was tests, tests and oh yes more tests! This meant generally driving up and down the motorway to London a lot, which in itself was testing! I had to have Lung Function tests, ECGs, Heart Ultrasounds, Chest X-rays, kidney and liver tests involving radioactive stuff being injected into me and a series of blood tests.  I then had the pre-transplant clinic...I sat in a room with Helen one of the Pre-Transplant specialist nurses and two doctors, one of which was the transplant coordinator doctor.  This meeting was to go through everything with me, and I mean everything.


I had of course been through the procedure a few times with Prof Marsh but this was everything that could possible happen or go wrong.


It is a bit of a  blur now but the bits I remember are being told are:  The side effects of the Chemo (or conditioning as they call it) such as Nausea, vomiting, Diarrhea, mucositis (where your mouth cells are affected and mouth gets sore, might need feeding tube etc...), taste changes, hair loss, fatigue, heart problems, drug reactions, infertility, early menopause, thyroid dysfunction, Osteoporosis, lung fibrosis.


There is a 10% chance of graft failure, that the cells wouldn't take,  30% chance that I would get some form of what is known as Graft vs Host disease, where my cells and the new cells fight, 10% chance that this would be severe - and by that they mean have long term lasting effects such as needing oxygen for the rest of your life or something like that.  The GVHD attacks your skin, lungs, liver and/or gut.  A 60% chance all will be well in 2 yrs time, 10-20% chance of relapse and 15-20% chance of transplant related death.


Then they ask you to sign the consent form...ha ha....like I had a choice. The consent included agreeing for them to use life saving methods such as putting me on a life support machine if necessary.   It was ok really I know it is a risky business but I am also one of those people who likes to know everything, I know I need this and they, of course, have to tell me everything.


It was then a case of trying desperately to not see many people as my admittance date neared so as to not catch any bugs!