Still in hospital...I might eat myself if I am not careful...and i've been thinking...

I am still in hospital, arghhhh.....  As you know I was readmitted, this time to Leicester Royal Infirmary just over a week ago to up my steroids again and try and get rid of this Graft vs Host Disease that came back.

Incidentally pics of my room at Leicester...very different to kings...like stepping back in time, but they are very nice here.

 

I very quickly started improving which was fab, the rash went in a couple of days and they started reducing my steroids again.  I am now off of the intravenous ones and on a lowering dose of the tablets.  I was being discharged on Tuesday (24th) and the day before they were prepping my discharge notes to speed up the process on the actual discharge day.  Then literally 10 minutes after the doctor had come in to speak to me about the discharge notes and medications he came back in to say there was a problem!

Damn it...  they had got a blood result back for a virus called CMV.  This is one of 3 virus's that they check for in your body to see whether you are a carrier before transplant.  It one of the most common virus' and once you've had it, usually from childhood, it lies dormant in your system and when you are immune compromised such as having a transplant it can reawaken and make you ill.  I carry this one virus called CMV so i've been on some medication to try ad keep it dormant but....the blood test results showed it has reawakened.

I don't feel ill at all, but they have to stop it or it will lead to bad things and we do not want that! So unfortunately they have to give me 7 days worth of an anti viral medication intravenously through my hickman line.  They can put me on tablets, which they probably will when I eventually get discharged but the complications are that this anti viral medication often makes your blood counts drop (brilliant!) and can make your kidney and liver function bad as it is very strong so I need to be in hospital to have it.  

On top of this I am still extra immune suppressed by being on the steroids still.  Thankfully though I am feeling fine, my only side effects, things that are making me feel unwell are the steroids and growth injections which make my bones really hurt...I needed morphine the other night!  I feel like my whole lower body is being stretched and stabbed all the time which is painful and I am very weak if I try and walk.  I am just happy I don't feel sick, can eat, can breath fine etc...

It is now a waiting game as frustratingly they are a little slow here.  The CMV blood test check is only done on a Monday and Thursday and takes at least 3 days to get the results.  Therefore I could be ok but need to wait 3 days for the results before they'd let me out meaning I won't forseeably be leaving hospital anytime before the middle to end of next week....Roll on February! Argh....

So I mentioned I might eat myself....I seem to be thinking of food all the time.  In fact one of my projects while I am off os to sort out all my recipes and get some order/type them up or something.   I am having a bad day in terms of boredom, although feel a bit better for getting sorted and writing this...I always think I don't have anything to say then blab on for ages...sorry I digress.  Yes, I seriously have just had an eating day today...I feel like it has been constant and actually I don't care, although I will have to start caring soon I think.

You will be pleased to hear the food in here is so much better than Kings.  You get to choose your main, then you choose your potato bit and veg bit separately.  The soups are not powdered and actually contain real bits of veg...shock horror! The Veggie options are basic, like pasta bake, veggie burger, leek and potato pie (the worst thing as it is literally a load of mash potato with cheese on top...very dry but I am not complaining, oh no.  In fact a lot is dry but so much more edible and like proper food.  There is a kitchen and if I am not neutropenic I can go in myself and get stuff, in fact you make your own brekkie in that case.  The kitchen has all sorts of drinks, cheese and crackers, fruit, crisps, choc, biscuits, soups, bread...makes you feel more in control rather than dictated to as to when you can eat.

Food becomes a massive part of your day, you look forward to receiving your meals etc... when you are in for such a long time, one could say it is the highlight! 

Other news...I am thinking once again of when I life is getting back on track.  I feel more positive although I know it will be a longer than 6 month process now.  I have always loved baking etc and so I have decided to set up a cake/bake club when I am better.  I cannot find one in Northampton and it will be a social thing maybe once a month or something, each person makes a cake, it can be themed, round someones house or at a venue, chat, laughter, recipe swap, could even have baking sessions such as bread and share it out etc.... lots of ideas but it excites me.  Got inspiration from Clandestine Cake club http://clandestinecakeclub.co.uk which is a national thing so might set up one of those in Npton as a starter.

The other thing is that I have always thought of myself as creative and love sewing, making home stuff, bags etc... which I used to do.  I've wanted to hone my skills, maybe do some craft/vintage fairs etc and I have finally found a great studio where you can do sewing sessions, courses, stitch and bitch sessions each week and it is only around the corner from my house! Just need to get better......

Bye for now...it's dinner time in approx 47 minutes...now what did I order...

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...