Sleeping sickness and blood counts

The last few nights I haven’t been able to get to sleep properly. I’ve managed to dose off during the day though (I think). I’ve been sleeping with the backrest slightly raised since I have been here. Last night though I thought I would try putting the back rest down and trying to sleep flat on the bed.

Bad idea ……

No sooner had I lay down on my back but I started to cough a little as I felt acid in my mouth. I sat up and tried to spit it out in a tissue. Coughed a little more, then threw up a bowl a bile. So after cleaning up I raised the bed again and tried to get to sleep. I managed a couple of hours again, but nothing like a proper sleep. I don’t think I will sleep properly until I am back home.

I got my blood counts back again yesterday and the good news is that my neutrophils are starting to increase.

	3.9.2010	6.9.2010	Target
Neutrophils	0.0	0.2	between 1 and 2 before I can go home, nearer 2 the better
Platelets	7	22	Normal is  between 150 – 400 but anything over 20 they don’t consider too much of problem as it will increase
Haemoglobin	11.6	10.6	They don’t seem to worry too much about this dropping slightly
White Cell Count	0.0	0.7

The main one that I’m interesting rising is the Neutrophils. The rise is the expected amount at this stage and Wednesday they would expect to see it at about the 0.5 range.

In general though it is going well and I’m not counting the days down to coming home and to be able to fully recover and to finally get a good nights sleep.

Day 10 another good day

Today has been another good day for me. I woke up about 3:30am, so had a few hours sleep, lay awake in bed with my eyes shut for a while, resting while I could. Decided to watch the x-factor at 5am on ITV iPlayer. The nurse asked at about 5:30 if I wanted anything, so I decided to have some toast and marmalade whilst watching the x-factor. I didn’t have any cereal at 8am which I tried to at least have a few mouthfuls because I had not long had the toast.

Lunch I ordered the Chicken and was told they hadn’t got any, so I ordered the sausage. Except when it arrived it ended up being the Chicken again. Again I managed to eat most of it along with the potatoes as well as some ice cream and jelly afterwards. I have to take my time eating as my stomach isn’t quite up to it properly, but it’s getting there.

Dinner I decided to try something new, the Corned Beef Hash. Maggie, the nurse, warned me though that it didn’t really resemble anything that looked like Corned Beef Hash! When it arrived, I knew exactly what she meant. It isn’t something you would want to look at if you was feeling a bit sick, lets put it that way. But me being me, I will try anything if it will help in my process of getting better, so I tucked in. Surprisingly it was very nice and I almost ate everything. Maggie asked if I would like some pudding, so I went for my usual of two lots of ice cream; however Maggie came back and said they have ran out of ice cream in the fridge (probably due to me eating so much of it). She suggested steamed jam pudding and custard. Now I’ve been caught out like this before, where my mind thinks … mmm that would be lovely, only to end up being sick once I had tasted it. Throwing caution to the wind again I said yes. It arrived, steaming hot custard, the smell so sweet. I took a tiny bit of custard with my spoon and thought, ‘is this really going to taste as nice as it smelt?’, and yes it did. The sponge, syrup and custard was very sweet, but I could taste it and it didn’t taste, which has made a change as everything becomes tasteless after the chemo. Again I couldn’t manage to eat it all but it was very nice.

I had to rest for quite a while after eating it as I didn’t want to disturb my stomach and throw it up. My stomach was making all sorts of noised and gowns and pains as I could feel it being digested with all of the other food during the day. My body trying it’s hardest to adjust to having food again.

By about 6:30pm my body told me you need to go to the toilet and it was right. It felt like I was there for about an hour, but it also felt like the best poo ever. It felt as though for the first time in weeks my body was actually doing what it was supposed to (at least to a point).

I’ve had a couple of hours sleep and rest and felt good.

I still have a runny nose a bit, but I think it might just be the air conditioning. They have taken swabs, but I wont get the results of that back till tomorrow.

I’ve also had my growth factor again today and tomorrow they will take blood tests again to see if it has started rising. I’d be very surprised if it hasn’t now.

22:00pm and just had some more toast and marmalade, one and half slices is all I could manage with a cup of tea. My weight has gone down again today, but will see what happens tomorrow.  I have to keep telling myself that I need to eat and drink, without food and drink my body wont have the energy to recover. So although it has been difficult eating over the last few weeks, the bit by bit procedure I have adopted in my mind seems to be working.

From the looks of it I have manage to avoid all of the worse things that everyone else has experienced, at least so far. I’m obviously not out of the woods yet, but it is looking promising.

Over the next few days I will try and put blog post together that outlines the things I have done to try and make sure it goes as easy as possible for others who have to go through  a similar thing. That’s once I know that I am OK and I’m working my way back up, it would be no good making suggestions until then.

Fat Water

I had a meeting with the dietician yesterday – we went through the list of food to eat and avoid whilst being Neutropenic. It was very informative and she was very helpful. Charito managed to meet her later on and alleviated any fears she may have had about cooking Peruvian foods.

I need to try and keep my weight, as now is definitely not the time to go on a diet. As I’m losing weight it is only my muscles that are disappearing and not fat. I don’t have much muscle anyway, so I can’t afford to lose any.

2200 calories I need to try and eat a day to maintain my current weight. Iv’e lost over 5Kg so far whilst here so I am eating as many fatty things as I can. Cheeses etc and I have Kandyshakes supplement drinks that I quite like so I’m trying to have at least one of those a day as well.

I have also been given a tin of power called Polycal. It looks like a tin of baby milk, with it’s own little baby scoop. Each scoop is 19kcals and I can add it to any hot or cold drink or any other meals that Charito wants to cook. It is tasteless and does nothing more but add calories. I have tried in coffee, Juices and water and it is fine.

So now I can get fat on as much water as I want, normally add two or three scoops to each drink.

There comes a time when you just have to try

As you know, my stomach hasn’t been good, the chemo and transplant, along with the other drugs, has its affect on the bowls. At the moment I discovered a skill I never new I had. How to be sick in a bowl whilst weeing into a jug at the same time as having diarrhoea.

Those of you that have been through this will understand what I mean, but the point is that it gradually gets better. The diarrhoea slows down, but you don’t know if you are going to have diarrhoea or not when your stomach hurts, you have to get to the loo as quickly as possible or take the risk of messing your PJ’s.

There comes a time though that you have to take the challenge, is this going to be just wind or am I going to have a nasty surprise. So after several successful attempts at going to the toilet just in case, you decide the next fart attach I will give it ago and risk it.

The tension builds ….. the pain rises and you just have to pass wind. You hold your breath tentatively, was that a successful operation, did the fart arrive safely. Your not sure, so you have to go to the loo to make sure anyway.

It’s surprising how something simple can make you so happy…. hooray I managed to fart. I’m not actually sure, but I might have given a little cheer!

After about another 20 attempts you begin to trust yourself a little more, but now and then there is one that your not quite sure of and still have to go and check.

I feel all grown up!

Very High Temperature

Thursday night at about 10:30, just after the nurse had been around for obs, I decided to go to the loo, before trying to settle down. My stomach wasn’t brilliant (as usual) so crawled back into bed. No sooner after lying down, I felt myself start to heat up!

Oh no! I’m starting to get a fever similar to the one I had early on in my treatment where I had what is called rigors. Your body shakes violently all night and is very painful. The only thing that they can do is try and cool you down as much as possible. I waited a while before buzzing the nurse to make sure that it wasn’t just some kind of hot flush…. it wasn’t!

I buzzed and the nurse came in and I said ‘It it really hot in here or have I got a tempertures’. Errrr no it’s really hot in here. Thank goodness for that, it wasn’t me. She explained that the air con sometimes blows out hot air, but it should adjust as it is all computerised. Computerised … mmm the answer and blame for everything. I waited about 15 minutes, but it was no good I was roasting. I buzzed again and said she would call the engineer, which she did. about 15 minutes went by and by now I am cooking. All of the nurses came to the door and realised there was something seriously wrong and tried to cool the room down for me with fans and leaving the door open to try and get some cool air in. They rang the engineer again and set it as a very high priority to get fixed. Don’t forget all of the trouble everyone has gone to to keep infections away, now I’m in a room heated to perfection for bacteria to grow.

The staff were trying there best and couldn’t do more for me. It was about midnight when the engineer came, I could hear him working outside in one of the cupboards (so I’m told). He managed to do a temporary fix where it would blow out cool air and wouldn’t be able to regulate it. No problem at least I will cool down. I tried climbing in the fridge naked, but that didn’t go down too well with the staff. At last cold air. I can breath again, few.

The temperature it was set at was cold. I was given extra blankets if it got too cold. Nothing could be worse than being slowly cooked so I said it wouldn’t be a problem ……. why did I say that, I don’t know.

It got colder and colder, to the point where I was trying to climb in the fridge. I also discovered that it is possible to make ice sculptures out of wee!

I couldn’t stand it anymore, wrapped up in my dressing gown in bed under three covers, I was freezing. …. time to buzz again. I can’t stand it anymore you are going to have to ring him and get him to change it again. The time was now about 3:30 am that he came again and adjusted it.

Guess what, this time it wasn’t cold it was hot again, not as hot as it was before, but certainly uncomfortably hot. Again fans on and I tried to get some rest, but never quite managed it.

The morning came (what time does morning start) and I was told the heating engineer would be here as soon as possible, he is awaiting for the part to arrive.

He arrived in the morning at some time, cant’ quite remember as I think I was a bit delirious at this point because of the heat exhaustion. He spent most of the day here but had it working, in that it wasn’t hot anymore, by about 12pm. So during the day I had this oily engineer walking in and out of my room taking bits off the wall and testing the temperature. He got told off by the nurses for not wearing he apron, naughty boy. After he went I wiped all the controls and the surfaces he touched with alcohol wipes. I’m sure he was a clean person, but the though of muck and oil in my room when I zero immune system didn’t thrill me.

There were going to move me to another room as soon as they moved another patient to another ward, but by the time that was organised I said I didn’t mind waiting the extra bit to save all the problems. I’ve settled in the room now and I didn’t want to have to get used to another one.

Today my nose is running, not sure why yet, I’m going to have some swabs taken later to get them sent off for analysis. Lets hope I’m not coming down with a temperature!

I’m still here

Well I’m still here, which is always good. I’m doing OK and not had anything really bad happen to me yet!

Rather than post everything in one blog post I will write a few, just to give you something to read.

First of all thanks to everyone who has sent me emails and texts, sorry I haven’t replied but been a little busy, normally being sick or on the loo.

At the moment my counts are zero and I have had two lots of Growth Factor. Monday I should see them start to creep back up again. Fingers crossed.

For those of you that understand the details currently my blood counts are:

Type	My Counts	Normal Healthy Person
Haemoglobin	11.6	13.0 – 16.7
Platelets	7	150-400
White Cell Count	0.0	3.5 – 11
Neutrophils	0.0	2.0 – 7.5

I won’t try explaining all the above, if your interested in what they mean, Google them. Basically though it means that my Neutrophils (part of white cells) are still zero and the growth factor injections will stimulate my new stem cells to rebuild my bone marrow and increase over the next few days.

The platelets as you may have noticed are way way way less than normal which means that my blood wont clot. My nose has been bleeding a bit (not much) and so I have had to have some platelets via a drip to increase my count. It’s a good job I don’t wet shave! I will also bruise very easily at the moment so I have asked Chartio not to hit me, just in case (he he).

I’ve managed to keep everything I’ve eaten today down, which I think is a first. Yesterday I had cauliflower cheese, which came back up as quick as it went down (not pleasant). This morning though I woke up a bit more refreshed after having a bit of sleep which I didn’t get the night before because of the the TEMPERATRURE PROBLEM, more on that in a another post. Anyway, this morning I woke up (again which is a good sign), but I was very hungry. I had to call the nurse at 6am to order some cheese and crackers, they couldn’t supply the selection I usual enjoy with a bottle of wine,so I had to settle for a few jacobs crackers with cheese triangles. It was just what I needed and I could taste them as well (sort of).

I had lasagne for lunch, which I also managed to keep down only a tiny portion and could only manage half, but at least its more food down me. Just had dinner of vege soup which took a while to eat but again so far, managed to keep down, so the its looking good for a whole day without vomit. …. did I speak too soon.

Oh **** the flowers in Swansea

I have no idea why some of those words came me to at 2am this morning while sleeping and other I definitely do. However these are the words that came into my mind as I was suddenly woken up!!! I realised I was passing wind three times uncontrollably in bed. Not a major problem for someone at home, but a huge problem form me at the moment who can’t go for a wee without having a secret attack from the other end!

I jumped up (as quickly as I could, realising what I might have just done), turned the light on above my bed, the call buzzer went off, I’m not sure if that was me or not so tried cancelling it, I didn’t want someone walking into my room with me on all fours pointing my bum at the door stretching over to start flashing lights and say look at what I have done! So it quickly went off (if it was more or not, took no chances). Got out of bed trying to discover as I walk if my bum was wet or was it the cream they gave me to stop it being sore because of the sandpaper tissue. Moved delicately to my cupboard where I store my extra underpants (worn especially for hospital by the way – just in case of emergencies like this). Make my way to the toilet and dropped and checked as you do …….

…. I was like a little boy again, I wanted to shout out ‘Mummy’' I’ve been a good boy and I haven’t pood in pants! (not sure if I said that out aloud or not)  Did the usual checks again and when back to bed a happy boy.

So where did the Swansea bit come into it I have no idea, but I new one things….

4am …. The flowers have arrived…

Yes sure enough I woke up again with the same stupid thought of Swansea in my head and this time my stomach was rumbling like mad. Taking no chances this time, up and to the look. This was not a practice run.

Made it ok,  it’s a good job loo’s are reinforced, the flowers were arriving complete with the fertilizer they were stored in.

I wonder if the vegetable soup came from Swansea and contained cauliflower?

Chemo – Transplant – New Day 2

First off I need to say happy birthday to Amy – Sorry I can’t come and see you for obvious reasons …. your away in a caravan …. oh and I’m a bit busy at the moment as well. Your card should be at home when you get back and sorry for waking you up this morning when you was trying to have a lie in.

Anyway … back to the important issue ME

Last night I was sick before going to get some sleep, not that I could because of the steroids you have pumped into you. So I was awake most of the night and for some reason all I could think about was work and planning what to do when I get back. Every time I nodded off my little pump would kick in that spurts out the ant sickness + additional stuff. For some strange reason in my tiny head I thought this was my alarm to get up for work! So every time it made a noise I swung my legs over the bed thinking I was getting up for work. …. I lost count of hour many times I did this.

I had a coffee at about 3am which was good for my fluid counts as I need to take in more than I am doing at the moment.

I managed to keep some cornflakes down this morning which was a good start, but when it came to lunch I though I would try the spaghetti hoops with some toast fingers. I was really hungry and was looking forward to eating them, they seemed to be going down OK at first, but then ….. up chuck they came. Into one of my regular cardboard up chuck bowls…. again in the usual process of walking to the loo so I could sit down as well just in case (as usual good job I did). When the nurse came I told her couldn’t eat it, but it did look like it came back up the way it went in if she wanted to recycle it …. (I don’t think she appreciated my sick sense of humour - no pun inteded )

For dinner I had ordered sausage and mash, which I ate a little bit of and managed to keep down; followed by two tubs of ice cream …. mmmm yummy!

I’ve drank plenty of water since and got my quota back up and hopefully get some sleep letter on as they gave me the steroids early this morning to see if that helps.

I haven’t seen many nursed today checking up on me as they have been very busy with the other patients and apparently I’m doing the best so far, although I have a funny feeling that might change next week when my blood counts fall.

On another point from Paul, I too wondered where I was supposed to stick that huge spike they gave me in my hand when they first wanted to take my temperature. I had to ask them where I was supposed to stick it, as I was used to have my temp taken in my ear. If I put this thing in my ear it would poke out of the other side without anything stopping it in between. Fortunately it went under my tongue so that wasn’t too bad, although I have had it under my arm as well – not during the temp measure though … that would be yucky!

Chemo and Transplant day zero – Happy Birthday

I haven’t been too good the last few days to blog so a bit of catching up to do.

I had the high dose chemo as mentioned in last post on Wednesday and I have been sick throughout the Thusday and diarrhea (look away now if you are squeamish).

They gave me all the different anti-sickness drugs they could to try and control it, none of them seemed to work brilliantly but I could manage. Thanks for the advice about lots of underwear and PJ’s Paula – I was caught out and surprised when I was being sick and… well fill in the details yourself!

I had my Transplant yesterday Thursday at 2:15 approx. Seven bags of stem cells which took about 2 hours. I vomited during the process on bag 5 (not literally, that would be a bit messy, it was in a bowl). The count this day as day zero or as the nurse said ‘my new birthday’. Does that mean that I get two cards and two lots of presents a year now?

Last night was a night of being sick again, I worked out a system to get to the loo, sit down and puke in a bowl, just in case I had any surprises while puking. Helen the nurse that was looking after me over night was very good and we tried different anti sickness ideas. The last one was injected into my Hickman and seem to do the trick after being sick at about 6am I managed to get a few hours sleep and felt much better by 9am this morning.

I managed my shower and got cleaned up and performed the strict mouth wash regime as normal, which consists of brushing teeth, mouth wash rinse, droplet rinse around mouth.

There going to put an addition into my pump to see if it help reduce the sickness. As I’m writing this my stomach is churning again. I’ve eat half a slice of toast this morning and had a cup of tea. I haven’t eaten for the last couple of days as not felt like it. Just need to see how it goes.

The next stage is my blood count to drop to zero, which is expected, that’s when I have no immune system and will no doubt be ill and get a temperature. I will probably get Rigors again, which I have previously had when I first started my treatment and ended up in hospital for a week. It’s where you body shakes uncontrollably because of the high temp. Although I felt really cold the way to reduce it is to cool you down. Not looking forward to that bit again as it wasn’t nice, at least I know what to expect this time though.

I will write more when I can…..

High dose chemo

Today was my high dose chemo (Melphalan). I had to have lots of fluids via a drip to make sure my kidneys are working which consisted of a litre of fluids every hour at first and then measuring how much urine I passed, which I need to pee in a jug to measure every time. …. talking of which, back in a minute ……

…. back now another 300ml registered on my chart. The chemo is given in two large syringes attached to my Hickman line, which they inject in at the same time as a drip is running with some other stuff to protect the liver. It took about 5-10mins to inject in. Prior to administering they had to go through all the checks to make sure that they have the right person etc, which is good that they check so thoroughly they wouldn’t want to give that to the wrong person! She also told me that during the process of it going it, I may feel hot flushes, my face may go red and it will feel like you are eating a very hot curry! Fortunately I didn’t feel any of those symptom as I don’t like hot curries. Everything went ok and I was passing enough water, so my kidneys were flushing it through ok. I still have to be on fluid drips over night as well as the anti sickness that I have been having through the the portable mini drip.

Tomorrow will be my stem cells going back in and I will let you know how that went.

On another point I must say how wonderful the staff are here, nothing is too much trouble. They even offered to change my room for me today to a bigger one if I wanted and went on to explain that the day that I cam in they were really busy and had 8 people on the ward, which may not sound a lot, but when you consider this is a specialist unit it is quite a lot. There are now 5 people here, of which I am the only male, not that it makes that much difference, I don’t get a chance to leave the room, let alone flirt with anyone (as if I would!). One of the women is Marilyn who had her stem cells extracted at the same time as me.

I was also talking to the staff about Paula (Feresaknit's Blog), they were saying how lovely she was and how infectious her laugh is. this is where I wondered if we were talking about the same person …… only joking Paula don’t hit me the next time we meet. Paula makes some lovely things out of wool and if you get a chance take a look at her myeloma buddies which you can buy online. Paula made some buddies for one of the nurses here and she was saying how lovely they were. I think they were surprised a little how people with Myeloma keep in touch and read each others blogs (our own mini community)

Well that will do for this blog post, more later or tomorrow. If you have any questions, just leave a comment. Oh if you are going to do an anonymous message, I’m ok with that, but I think some of you that have left messages expect me to know who it is. Although I’m good, I still haven’t mastered my psychic ability to know who you are without you telling me.

:D