Its been a while.....here is the update...

Last time I wrote was back at the end of November and I'd had a bad bought of infection in my lungs but was coming out of the darkside...or so I thought....here is the next chapter...with some pretty horrid pictures too but this is real life!


I seemed to get a lot better and was eventually able to come off of the oxygen.  On Thursday 8th December I was discharged and came home, a very long day as they take so long to let you out the actual hospital we didn't get home to Northampton until late in the evening as it is a long drive from Kings.  I felt Ok, I mean, how was I meant to feel after a bone marrow transplant.  I didn't think I was meant to feel great just yet!


I was still being sick many times a day, unable to eat much at all, if anything, so that was about 4 weeks without eating a proper meal at one point.  In fact just the thought of food was awful and made me want to be sick.  The thought of taking my medication...approx 30 tablets a day plus mouth washes, liquids etc... made me feel and be sick.  I felt very cold I remember and basically spent the next 2 days wrapped up under a duvet at home.  It was all a massive struggle but I was home so I just tried to wake up and function each day...I managed for 3 days!  I did manage to have one nice day with my brother who was over from Australia when I came out and we watched Harry Potter films in the living room! 


Monday morning came and it had been arranged for me to go to my local hospital as I had done before for blood tests.  It was this day I was readmitted to hospital.  My kidneys and liver were on the verge of breaking point, I had a temperature, my lungs were raspy again and I had developed very bad Graft vs Host disease on my skin, where a thick, sore, lumpy rash spread rapidy across my body as a reaction.


This was such a low time, I felt so ill and wondered sometimes if I'd see the next day and how much more I could take.   I got more poorly, went back on oxygen to help me breath and was blue light ambulanced down to Kings College Hospital at midnight on Thursday 15th December for more specialist treatment.  By now I was on oxygen again and had a severe lung infection and the Graft vs Host Disease (GvHD) was very bad.


So...back in Kings I was put on a large dose of steroids.  They try to avoid this but if the GvHD takes hold they have to do it, it is because steroids also act as a suppressant for the immune system which they don't want considering the fragility of the new system and already being on a drug called Cyclosporin which is a suppressant also.  I also had loads of fluids running constantly to try and flush my kidneys etc... I was put straight back on intravenous Antibiotics, antifungals etc...  I also underwent two broncoscopies (camera put down into your lungs - the most horrific experience!) to try and see what was going on and take samples.  I also had a 'blood eye' as i'd coughed and burst a vessel in it...pretty....

Blood shot eye

Bad times....

I can speculate a lot right now and this is an ongoing issue in my mind but I think and everyone (other docs etc....) seem to agree, I should never have been discharged that first time.

So I spent Christmas and New Year in hospital and I didn't care at the time, when you are poorly you don't!  It was actually around Xmas day I was feeling a lot better,  I was off the oxygen and I think I ate my first proper meal for weeks...my veggie Xmas dinner, hospital style.  A dry quorn fillet, potatoes, one stuffing ball, rock hard carrots & sprouts but at the time it was bliss to be able to eat it....in fact I had it for lunch and dinner! 

My veggie Xmas Dinner

Another nice touch, very unexpected, was on Xmas morning when four of my nurses came into my room singing 'We wish you a Merry Christmas' with a present (some M&S Bath smellies).


I found this second stint in Kings much different as there were different nurses due to the Xmas period and I felt a bit more isolated.  I have a lot to say about a few things I am really really unhappy about with regard to some of my care but that is for another time/another forum I think and unfortunately something I will be taking further.

Hair shaved off as coming out

What I look like now....

So here I am now....I was discharged on Tuesday 3rd January when my most amazing boyfriend (words now fail me when it comes to this brilliant man!) came to get me.  I am feeling so much better than when I came out before...that's why I know I was let out too early!  I have to be very careful about seeing people, catching colds etc.. as my immune system is so fragile, like a new born child but with all the other stuff going on too like having another persons cells.  I am on a lot of medication which is like a military operation daily.  My face is massive and round due to the steroids I am on (they have to wean you off of them slowly but roll on 21st Jan when I am off mine!)  I go to my local hospital 3 times a week for blood tests and check up with the doctors but I don't mind, I am just so happy to be feeling human again.


I am very weak, having been in hospital for 2 months only walking a few steps at most in my room means my muscles don't work properly (plus the steroids affect the muscles).  I really am just resting now, and I can tell you even resting makes me tired! I know I still have a long way to go but I feel like I am on the road to recovery.


I am now on day +56 post transplant and we are all aiming to get to day 100 without any more glitches...I have had one bone marrow biopsy so far (have another next week, every 30 days) which showed good results and the new cells working.  I have not had to have a platelet transfusion for at least a month (I was having these every 3 days before), my white cells are around 5 and holding their own, neutrophils were 4 at last count which is amazing for me.  I still need red blood sometimes but the levels fluctuate up and down and this is normally the last thing to settle.


There we go...I am sure I missed loads out but I was not in a fit state to communicate with anyone for such a long time.


Until next time, thanks for reading and caring!

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...