These are the few snaps I took at the 10z Outpatients Christmas get together on the Outpatient ward.
Nobody will thank me for these, as most of the nurses were having their hair done for their night out and had them clipped up. Others they look drunk in, obviously no alcohol was involved. I didn’t get a chance to take any serious photos, oh well, maybe next time.
I thought I would show you a few pics of my hand with the GvHD. I couldn't show you both hands as my other hand was busy .... taking the picture of course.
I've moved rooms now to room 1. This room has a window, but further away from the toilet, has no mirror, but I have a constant dripping tap to listen too!
A had a nice surprise before. Jill the nurse I regurlarly see on the day ward twice a week came down to see me and gave me an invite to a christmas party for those that attend the day ward. Its only for patients and if we all turn up it will be a bit crowded in the smalll room. There will be mince pies and a christmas bingo. I might still be on the ward here by the time it arrives so I will pop off the ward and go up a few floors.
Thanks for all of the comments and messages over the last two weeks (doesn't time fly) again its good to know that I have the support and encouragement of others and that my blog is also helping those who are just going through the process.
Linda I read your blog this morning I hope EZ has caught the shingles at the early stages and start the treatment staight away I wouldn't wish the pain on anyone. I love the workshop by the way and the steps looked great.
Im going to give a brief update as to what has been going on over the the last few day, well as brief as I can.
Added after posting for clarity: The hospital refered to here is the Royal Liverpool Hospital ward 7y I've been put into one of there spare rooms with no windows, room 9. I don't mind the peace and quiet though.
I arrived here on the Tuesday about 5pm by ambulance, after a being taken to my room I was very thirsty and asked for some water. I filled in a long form of information, I don't know why as they have my records here anyway, but I played along! My mouth was really dry so I asked for a drink of water. Yes a second time to a second nurse. I asked another nurse for a pillow and a second blanket. I like to use the extra blanket during the day to keep my main bedsheet tidy for the night as well as covering me up during the night if I get cold. The pillow I got straight away, I'm still waiting for the blanket after asking 3 times and have given up hope. Did I mention I was thirsty... well the third nurse finally got me some
By this time it was about 6:30pm to 6:45pm I hadnt eaten properly since my breakfast which consisted of cornflakes, so I asked if I could have something to eat. The nurse came back and said unfortunately the kitchen is closed, but I can make you some toat, only tome come back again to tell me they had no bread! She had found some rolls in the kitchen if I wanted some bread rolls with jam. OK i said, as if I had a choice.I only eat one of them. Later on that night we had a shift change and one of nurses popped her head around the door and asked if I wanted some toat, sigh. I said I would but I dont think you have any bread. She said we migh have some hidded away.... sure enough she found some and I had some nice warm toast.
Another instance I wasn't happy about was when having one of my drips for antibiotics. The antibiotics had finished and a flush was set up which takes about twenty minutes to go through. The flush was set up at 2pm. I know this because I was in a middle of a phone call with Nigel when she came in to set the flush up and I said to Nigel I would call him back which I did a couple of minutes later at 2pm, as its recorded on my phone. I buzzed when it had finished and someone came around and said they would tell the nurse...... I waited ...... nobody came. OK their buzy, so I waited some more and then finaly decided to buzz again. Again someone arrived and told me they would get someone. Eventually the nurse who set it up arrived. I asked in a joking manner, 'did you forget about me?' She retorted quite sharply that she had seven other patient to see! It was now two hours later before she got around to me. Quite frankly I still think that is unacceptable. I had to have another antibiotic and flush straight afterwards and by the time it was all done, I was nearly due my next dose.
Charito came to visit tonight, not arrivving until 8pm she asked one on the nurses if she could stay the night in the room sleeping on the chair. She said she would have to check. The nuse she checked with said she couldn't do that, to which I replied, 'she has done it before'. We don't allow it. But we're in a sideroom not disturbing anyone, but it was still a no. She told us that the hospital has the facility to use the hotel opposite for when people have problems travelling. Its organised by the hospital security. They asked if they wanted us to see if there was a room available, to which we said yes. She came back and told us there was a room at a cost of £28. I thoght they would put her up for free, but after discussing it, it just wasn't worth it. We were told the visiting times were from 1pm till 8pm. So basically Charito arrived in time to go home! She stayed for 3/4 of an hour and then set off back home. Walking to the train station and then she decided to get a taxi home the rest of the way as it was very windy. I called her at each stage of the way to make sure she was safe as walking in the dark through Liverpool can be dangerous as well as in Chester.
About me
Im still spiking a temperature, although we thought that had sropped for a couple of days. Diarrhea has eased off. My hands are very red and I have moisturising cream as well as steroid cream to help deal with it. The doc has also put me on some anti fungal and some new steroids. He wants to see how I get on over the next few days before considering to send me home. I also need a couple of units of blood which I'm having one now and another at about 6:30am I need to have my antibiotics after this unit!
Well I'm still at Chester hospital, which I don't mind. I would only be waiting at Liverpool to see the doctors on Monday. I didn't have a high temperature yesterday, but I still have the diarrhea. As for sleeping I didn't get much last night the rash on my hands and legs were very itchy, the top of my legs more than anything.
The itchiness seems to wear of during the day and come back in the evening along with the temperature.
I hope when I get to Liverpool that my stay is only short!
It's too late to go over to Liverpool now, so either I might be going over tomorrow or waiting till Monday. Monday is best as the full team will be in. I'd rather stay here for the weekend where Charito can visit than go to Liverpool just to be waiting around till Monday.
Yesterday, Thursday, I moved ward into another sideroom. I'm feeling slightly better, I've been eating a little bit and the diarrhea isn't as bad today. It looks like the antibiotics are begginning to work.
I'm being transferee to the Royal hospital later on so that they can do a thorough check. They want to be sure that it isn't graft v host desease taking over my body. Although this makes it awkward for me or rather for Charito, it is better to get checked over and be sure I'm OK.
Charito won't be able to visit me because of the time she finishes work and travels to Liverpool it will be time to travel back home again. As well as it being very late. She agrees though it is better to be safe than sorry!
I've had another night of the same thing, mornings my temp is OK night it keeps climbing although according to my chartlast night it didn't rise! The reason being is that by the time they come to take my temp its gone down again and the reason it has gone down is that I know that I should cool down so I open the window and throw the covers back.
I've just had a visit from the medical team from the oncology ward, the people who I usually see and who actually know what they are talking about unlike the ward I am on now which is normally the ward people are put on as a tempory thing until they move on to a specific ward. It helps with the stats of patients being seen to from A & E so they meet the targets that the government has set. Anyway I started to ramble on! Dee a member of the team suggested that when my temperature climbs to buzz the nurse and get them to record my high temp so its on the record.
The doctor was asking me various questions about dates and such as how long have I had the rash for and things like that thankfully Dee helped me out with some of them. The one I really struggled with was the date I came out of hospital. I just couldn't remember at all, the Doctor even simplified it by asking what month. My mind was just a blank, it got worse, Dee asked where was you on bonfire night. Something I should have remembered because of all of the fireworks and also it was Nov 5 2009 that I was told I had cancer. So we gave up on that question.
It wasn't until after the team had left that I wondered how Dee the answers to some of the questions, I thought at first she might be psychic, but then dismissed that idea ;) and remembered (hooray I remembered something) that she reads my blog. I knew it would come in handy one day.
Oh and if your wondering, it was October 19 (day 13 post transplant) that I came out of hospital. I looked it up on my blog straight after they left.
