Tired and wobbly

They let me home yesterday but there were some complications. They tried to remove my Hickman line. The problem was that my platelet count was quite low. So they gave me two bags of platelets and then began hacking away at my chest for 45 minutes. But I kept bleeding too much. Also the line, having been in for 4 months was well and truly lodged. The doc gave up and sent me home. Today I went back for two more bags of platelets and then the attack began again. It took almost 2 hours to get the line out and it was a thoroughly traumatic experience. At times extremely painful. I have 3 stitches and the area is very sore. In the words of the doctor 'that was 100% more difficult than I expected'. At least it is over with but I got quite upset at all the pain I've had to go through, and it's not over. I have weeks of more blood tests and potentially bags of blood and platelets all requiring more difficult arm stabbings in my already wrecked veins. I'm sure once I get some sleep and a few days have passed I'll feel better.

I'm coming home

I've just been told I can go home! In just a few moments my Hickman line will be taken out. Then Imelda will come and get me. I'm trying not to get too excited until I'm out the door because who knows what can happen in the next few hours. I'm also slightly apprehensive. It's all a bit daunting after spending so much time in this single room. My balance is all weird too. I had a walk down the ward to the day room and I felt really wobbly. This isn't the end either. I have to have my blood checked on Thursday and there will be a series of appointments for some time to come, but at least this, the most difficult, stage is over with.

Country roads

Feeling great today. As far as I'm concerned I can go home. I am so hungry, so so hungry. But there is nothing here that I want to eat. I don't know what I want to eat but if I was home I could nibble on stuff and try different things. If the doc comes round today then that will be my argument. I doubt it will work. I'm so ready to leave!

So close but yet so far.

I know There's only a little bit to go but I feel so sad today. I've tried to have a weetabix for breakfast but it's still a bit harsh on my food pipe. I know that until I start eating I won't be allowed home. I'm so bloated as I'm still hooked up to a drip, for what must be a week now. It's to give me potassium which is low. Until I start eating I will be on this drip so it's a bit of a catch 22 situation. The doctors will be coming round today so lets see what they say. Maybe I could go outside for a bit of fresh air. I'm no longer neutropenic so the risk of infection has dropped significantly.

The end is in sight!

T+14 and things are getting better. I am able to drink, even though my mouth tastes foul as there is still thrush coating my tongue. Eating is still beyond me. The doctors are pleased with my progress and There's talk of me going home after the weekend. It is still a very difficult time and I'm feeling quite depressed. I know I still have such a long way to go with recovery but I'm so very looking forward to sleeping in my own bed. I've been in here for 21 days now. Because there is still infection in my line they will be taking it out before I leave. That pleases me. Usually they'd keep it in for a few weeks after in case of complications. So when I leave I shall be pipe free. I just need to stay strong for the next few days and get eating so my body can start building itself up.

Things are looking up

T+11 and I'm dreaming of a pint of cold orange juice. Things are looking up. Today I managed to drink sips of water, orange was a bit harsh. My counts are starting to show signs of recovery. I still have many issues to get over and my recovery to leave hospital will take time. I must still be patient as I could still be in here for weeks. There has been a complication in that my line has infection in it and therefore has been locked. I have started with needles in my arms but the vein options are already running low so it's now considered to use the line again as there are no other options. I'll keep you informed...

Woe is me

They upped my morphine dose but I am still unable to drink due to pain. I also started an anti fungal medicine to see if that is the culprit behind my 39+ degree temperatures. The doc said I was suffering the worse side of bad but none of this is unusual. Probably due to the morphine I feel indifferent to it. I just lie here drifting in and out of sleep. I no longer feel frustrated at being bound to one room because this is what I'd choose to do. It's just a matter of getting through it, and surely it can only improve from here...just a few more days. I'm really looking forward to downing some cold fresh orange. I feel so thirsty. My mouth is currently a mucus farm. I spit vast quantities of phlegm out constantly. It's pretty foul. The guy in the room next door to when I came in popped back yesterday. He said he felt really good. He had an extremely quick and trouble free turnaround and I was sure I'd be the same, but alas not. I was also sure I'd keep my hair as it was really staying put. But then what seemed like one hour to the next it all came loose. Even my facial hair is easily pulled out so I'm really trying to avoid my eye brows.

God of sleep.

T+7 and the past few days have been agony. My throat has been incredibly painfull to the point where I can't drink. It feels like razor blades in my chest. I have been on a hydration drip for days on end and today the pain became so unbearable that I am now on morphine. There is a needle under the skin on my belly with a tube that connects to a battery operated unit that injects a small amount of morphine every few minutes. Pretty good really. My pain has subsided. I should hopefully improve now anyway as this must be the lowest point with only improvement from here on in.

Patience is a virtue.

Today is T+4. That means It's been 4 days post transplant. Again I've had a nurse tell me how It's going to get worse before it gets better. Thy're really hammering this information home. I guess their policy is prepare for the worst accept the best. My mouth is a little more rose again today but I can still manage slices of toast. My blood pressure went down yesterday due to dehydration so I have been on iv fluid for 12 hours and have just hooked me up to another 6 hour bag. I need to drink more, which I'm attempting, but it goes straight through me. They are waiting on my stool sample to come back to check for infection. If It's clear then I can have something to stem the flow. If infected then I don't want to be bunged up with infection. The bank holiday isn't helping the results come back any quicker. I just keep telling myself it could be worse and every little thing that happens brings time forward a bit. Einstein wasn't wrong when he said time was relative because, relatively speaking, it's taking a whole lot longer for an hour to pass in here than if I was doing something fun.

Be carefull what you wish for.

Yesterday I was almost complaining that I didn't even have drips and medication to break up the monotiny of the day. How stupid. In the afternoon I spiked a temperature. Immediatelly blood cultures were taken and anti biotics given. This morning I started pooing in a box as all my intake and out goings have to be measured. In addition to this my nose started bleeding. I guess my platelet count has dropped quite rapidly. Who knows what the next days will bring? My taste has changed a bit but my mouth isn't sore as yet.

A Red Letter Date.

Today, the 3rd of May 2007. Today I got my stem cells back. About 2pm in rolled a mushroom like container filled with liquid nitrogen and the cells. They were divided over 5 bags. These were put into a water tank at 37 degrees to defrost. Each bag took about 10 minutes to drip into me. All a bit of an anti climax really. I'm still on hydration and can't wait to get free from this drip stand. Now I just have to wait. The guy in the room next door popped in to say goodbye. He only took 3 weeks to recover. A girl in another room is on week 6 so it is so hard to predict how long it will take.

All is well so far.

Today is day 6 or t-1 as it 's known in the industry. Today's chemo is harder hitting than the last few days in preparation of tomorrow's returning stem cells. I still feel great and have been sleeping very well still. The doc came round yesterday and is very happy with my progress. I feel I might get through this rather well but only time will tell. I should be neutropenic by the end of the weekend so I'll give a review of how I'm really feeling then. My heart rate has dropped to the mid 40s. Considering it has been about 100 for the past 6 this seems weird but no one seems worried about it. My pre chemo heart test came back good so it will just give me a good base to start my fitness update from. So far so good.