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!

The technical stuff...

So I figured I should probably give a bit of background about how I came to this point of having the Transplant so here goes:


I was diagnosed with Very Severe Aplastic Anaemia (Bone Marrow Failure) after coming back from a spot of travelling in 2003 (no connection but thought I'd set the scene!).  The symptoms I had were shortness of breath (this was because of my low red blood or Haemaglobin (HB) so I was not getting oxygen to the brain), tiredness (again due to lack of oxygen), blood coming out my nose and appearing as a rash under my skin on my body (this was low platelets) and generally felt like rubbish.


Aplastic Anaemia is an autoimmune illness, basically instead of my immune system attacking invading bugs and colds etc... it attacked itself.   It meant my bone marrow failed and it is in your bone marrow that all your initial blood cells are formed, hence I stopped making my own blood...pretty essential for life huh!  The main components in blood are HB (red) for oxygen to organs including the brain, Platelets ( the clotting part of the blood so you stop bleeding when you cut yourself) and white cells (including neutrophils) which is your immune system.  NB: Please bear in mind that although I have learned a lot about my illness and bloods this really is a bit of an overview as best I can do).


The only cure is a Bone Marrow Transplant.  My brother was tested but was not a complete match and a related donor is the best kind so they opted for a different treatment called ATG.  This treatment gave me antibodies and suppression of the immune system to try and kick start it again.  It didn't work for everyone but thankfully it did for me...it involved being in an isolation room for about 5 weeks and feeling pretty poorly but I survived and after 4 months went back to work without needing any further blood transfusions etc...


So basically I was ok for about 4-5 years and my bloods came back up, I had fairly regular check ups and still took medication called Cyclosporin which maintained the suppression on my immune system.  It didn't really affect my life, or I didn't let it but I was aware of the things I couldn't do such as have immunisations, take certain medications such as Ibruprofen & Aspirin and have a baby to name a few.


I then started to get low platelets and to cut a long story short they discovered that my illness had started to turn into another one called Myelodysplasia (MDS also known as Pre-Leukaemia).  It was only present in some of my cell so not urgent that something was done about it but it would eventually tirn into a veryhorrid form of Leukaemia if left.  I had not choice from here.  It was not a shock as such as I was aware that there was a small percentage chance that it could have this change.  Unfortunately for me I was in that small percentage.


The Transplant became more urgent when I started needing platelet transfusions back sometime in summer this year, which developed into needing them twice a week (platelet cells die very quickly).  Your platelet  count should be around 150-400 mine was never higher that about 70 when I was deemed ok, they then dropped to 5-10 every few days, hence the need for transfusions, if you go too low you can spontaneously bleed from anywhere that means internally, in the brain, your veins can't hold shape anymore so pretty serious stuff.  I also had blood (HB) transfusions every 2 weeks, normal HB counts are around 12-15 mine were regularly down to about 6.  Basically these transfusions were now keeping me alive.


I was still working though and was proud of myself for still living a normal life.  It just never occurred to me to do anything other than just carry on really but I realise now that a lot of people wouldn't have.


So here I am...sat in my isolation room at nearly midnight having had 5 days of chemo, the next starts in 5hrs time.  I will do a separate blog on the transplant process/pre transplant procedures and finding a donor etc...

Chemotherapy

Monday 7th November 2011 - Day one of Chemotherapy.


This will be just one part of many about Chemo I think as I will get different side effects etc... along the way but I am on a 7 day chemo regime which has specifically been tailored to my illness and the amount of bad cells that need killing off in my marrow before I have the donor cells given.


I have been prescribed 5 days of Fludarabine & Campath and 2 days of Busulphan, side effects include but are not limited to Nausea, Temperatures, Shakes, Sweats, Diarrhea, Headaches, Aching Limbs, Hair Loss, Infertility, Liver and Kidney Problems etc...  I've started getting about 6 of those so far.

The first day of having the drug Campath also brings its own problem in that you have a reaction to it as it is essentially antibodies and my cells try and reject it.  It was about 5 hours of hell but manageable...the beauty of hindsight! no really I coped.  It was like having really really bad flu I suppose.  Yesterday (11th) was actually the first day I didn't have a temperature so my body has accepted those two first drugs now.


Today (12th) I am on my last dose of the Fludarabine & Campath and then I move on to the Busulphan.  It is this drug that will have more affect on my hair. I may lose some or all of it but only two doses is a good thing. I am mentioning my hair as it seems to be the main thing people worry about isn't it when it comes to Chemo? I initially cried about it but come on, I gave myself some perspective and thought my hair is the last thing I should worry about, and even my fertility as the reality is it is better to be alive without these than not here at all without the treatment.


I know I am only at the tip of the iceberg when it comes to the side effects as they can take a week or so to kick in but I am prepared and hey what choice do I have.  I am in the best hands here, the staff are amazing and they certainly seem to have a drug for everything!  I take around 35 tablets a day as well as those given intravenously through my hickman line.


So roll on day 5 which will be a good day as my wonderful boyfriend is visiting today!

Food...

Well it didn't take me long to get onto this topic now did it.  I like my food, I am a keen cook and baker.  I am a vegetarian who prides herself on eating wholesome food, home cooked from scratch using decent ingredients.

But I am in hospital and now at the mercy of the PCT who decided to let this caterer...whoever it is... do the cooking here.

I am not one to moan, really I am not, and I have tasted my fair share of hospital foods over the years but 'Oh my Goodness' it is shocking here!  On my arrival on SundaY 6th November 2011 I was led into my isolation room, my home for the next 4-6 weeks where I was undergoing very intense, risky and life saving treatment, so obviously the first thing I do, along with my mum and aunt who came with me is to look at the menu...who wouldn't!

I was so pleased with what I saw, a fold out glossy menu with at least 8 vegetarian options plus 5 Indian inspired ones and I love that type of food.  Plus a snack menu I could just order from as I wanted.  Brilliant I thought I will have decent food, this hospital is not like one of the ones you hear about in the news with frozen omelettes and frozen jacket potatoes.  I didn't even have to fill in a days worth of food choices the day before, no they just ask what I want a few hours before the meal.

How wrong could I be, how quickly my hopes were dashed...along came meal number one of macaroni cheese...um I could see the congealed cheese that had melted and hardened all around the edge of the plate (plastic incidentally so they can microwave the food) but I certainly could not taste it.  However this I now realise was the best of a bad bunch...cold, yes cold risotto that i could pretty much pick up in one piece it had moulded together so much, a vegetable biryabni which was really curry and normal rice arrived still in the plastic microwave box with film lid...they didn't even try and hide that it was microwaved food.

Don't get me wrong, microwaves can have their place, i don't have one in my kitchen but i'm not necessarily against them but for my hospital food to be based around one is pretty shocking.  I am quite frankly scared to order one of the two omelette options which are described as 'fluffy' as I am pretty sure they are probably the frozen then nuked type too!

I am passionate about my food, yes I love to eat! ha ha...but I am a vegetarian who is passionate about where food comes from, how it is grown, ensuring my eggs and butter are free range etc...  I try to buy organic and for many years had a veg box delivered, i've dabbled with growing my own too.  I think food plays a crucial part in not only fueling your  body for living but nuturing you mind, body and soul.  It can be a joyful and lovely experience preparing a great meal, sharing it with friends & family or eating out.  It can make you smile knowing it tastes so good or you know exactly what is in it.  I firmly believe that food is a way of keeping you healthy and repairing you if you are not, at least to helping you on your road to recovery.  

All I can say right now is that Kings College Hospital obviously don't believe that ethos or they would be serving up something different...It is a good job I have the best and wonderful consultants, Doctors and nurses and loads of drugs here to help me because we can be assured it won't be the food doing it....

I've realised I need to be clever with my ordering...the sandwiches are ok, prepackaged but one could get sick of just the option of cheese or egg for a month.  The Jacket Potatoes, I mean how can you get that wrong...they are ok, not crispy as I would do them but I am not going to moan about a minor thing as that in this present situation.  Funnily enough the one thing that tasted the best was a pizza I had today...processed frozen pizza but at least it tasted ok (pic attached...the wedges were awful!).

I also had the nutritionalist come see me as I am not eating much...although that is partly due to the Chemotherapy taking away my appetite and taste buds a bit.. she suggested snacks...ambrosia creamed rice, cheese and biscuits, a pint of milk...are these foods going to get me better?    
Advice given on the Macmillan website is:  

• Eat little and often if you can't face a big meal.
• Tempt your taste buds by making food look as attractive as possible. 
• Having a small glass of sherry or brandy half an hour before a meal can stimulate your appetite. A glass of wine with your meal may help digestion.
• Keep snacks handy to nibble – such as nuts, crisps, grated cheese or dried fruit.
• Eat cold food if the smell of hot food makes you feel sick.
• Try to relax and not do anything else while you are eating

Point 2 above actually made me laugh!

I do know that if I think of the lovely home made Penne Arriabiatta I make or the gorgeous Squash risotto I do then I salivate and I know I would eat every last morsel...

So why am I here....

I am writing this blog as after being diagnosed with Aplastic Anaemia (Bone Marrow Failure) in 2003 (at the age of 23) and having some initial successful treatment my illness has returned and developed to have some Myelodysplasia (Pre-Leukaemia).  So I am currently sat in a bed in an isolation room at Kings College Hospital Transplant Unit undergoing 9 days pf Chemotherapy followed by the cell infusion (Transplant).  I will be here for 4-6 weeks....we are all hoping it is nearer to 4!


I basically have tried to keep a diary, thought that would be a good thing to do for myself and maybe others but I suppose to let out some emotion...that isn't working and I figured I am on this computer most of the time...couldn't actually do without it for communication purposes right now, so I'd write a blog.  If you asked my friends and family they would tell you I am upbeat and positive about it all and I strive to get on with life, we don only have on after all and this is quite frankly taking a big chunk of my life over.  I am therefore not writing this as I need to vent off emotion and be morose.  I cannot guarantee it will be all positive but it will be honest about how I feel, what is happening and well, be a frank account at least.


Some days it may just be a few word or a picture but none the less here is my Bone Marrow Transplant Journey...