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Wednesday, 30 November 2011

Hospital - First night

After settling in to my room I continued with my fluids and later on that evening I was given two lots of antibiotics, the names of which fail me. My tablets have been changed again upon the advice of Liverpool.

I couldn't understand though why my spike in temperature always happened in the evening and not during the day. As on the other night, last night was the same, my temp started rising in the evening. After speaking to the doctor this morning she explained that the body naturally secretes steroids into the blood stream during the day, which is helping with fighting the temperature, however as the day/evening goes on this natural defence mechanism reduces, hence my temp will start to rise again. At least I have that one explained!

I'm still not eating properly and have diarhea in fact I've not eaten anything yesterday apart from a couple of spoon fulls of soup, that just virtually went through me! I'm going to see the diatician later so I can get some milkshake supplements.

They are going to do some peripheral culture tests later on. These are similar to the blood cultures taken from my Hickman line, but straight from my arm instead of from the line. This will hopefully see if the infection is in the line or just in my body.

It's now 10am and if anything else happens I will try and let you know.

Tuesday, 29 November 2011

Hospital stay

Well after a long wait I'm finally on a ward. Its 17:35 and I've just settlled into my side room. So its been a rather long day after arriving at about 11:00 am approximately. It hasn't been anyone's fault really, its just been one of those things, waiting for blood results to come bacck and having to liason with Liverpool hospital as well as trying to find me a bed!

There really not sure what the problem is, but are treating it as a possible infection. I will probably be in for at least a couple of days. I was asked if I wanted to go to Liverpool or stay in Chester. Chester is much better for me, it's closer to home and easier for Charito to come and see me, she works on the same road as the hospital, only five minute walk away. If I wading Liverpool she wouldn't be able to come and visit me at all!

Update again

A few things have happened over the last week or so. Ive started to come out with a bit of graft V host desease. At least thats what they think it is the start of. I have a slight rash on my hands and legs.

Ive started to drive again, locally first and ive driven once to liverpool.

The last few days i havent been too good. Last Thursday my temp was up and down  and spiked in the evening at 38 but that was with paracetamol, so it would have been higher.

I told the doctor at my friday appointment and he said I should have gone in to the ward to get checked.

My temperature was down to normal at my appointment on the Friday but I had to arrange for two units of blood at Chester on Monday.

Friday night my temp started to creep up again but didnt go over 38. I was very tired on the Saturday and Sunday and what felt like my bones in my neck, chest and legs were really aching. I put this down to needing blood though on the monday.

I was tired coming into Chester on the monday and my temp was climbing again the night before. I had the two units of blood and later on that evening my temp started climbing and I had a bad headache.

My temp went up to 38.1 with paracetamol and I had to have the fan on for most of the night. I didnt feel well at all.

I was supposed to be at Liverpool for my appointment but after speaking to a doctor on the phone and telling them that I didnt feel up to driving the long distance to liverpool they arranged for me to be checked out in Chester.

Im at Chester hospital now blogging from my phone. Im not sure if im staying in or not yet. I have a bag packed just in case!

Thursday, 24 November 2011

Marine sgt supporting occupy wall street

This video is of the marine who verbally tackles the police as to why they are being violent to towards the unarmed and unaggresive occupy wall street supporters, the very people he went war to protect!

Watch "[Orignal full version] 1 Marine vs. 30 Cops (By. J. handy)" on YouTube

Sunday, 20 November 2011

Pepper Spray Police Brutality Again!

When will this stop, how long must it go on for? I have blogged in the past about the violence that the police use against peaceful protesters. Why are they allowed to continue with such methods without being stopped.

The video below shows the police again attacking innocent people. This time students at a university.

The second video shows the Chancellor of the university doing the ‘Walk of Shame’ – this video also shows again the restraint of the protesters after the violent acts towards them.

I have also included some other incidents of the violence that is being committed on a daily basis towards these innocent non violent protesters across the US.

Police Pepper Spray Peaceful UC Davis Students

Pepper sprayed UC Davis student leads peaceful shaming of Chancellor

84 Year Old Woman Soaked In Pepper Spray By Seattle Cops

The aftermath , a priest and a blind woman getting maced by the SPD
NYPD Police Pepper Spray Occupy Wall Street Protesters (Anthony Balogna)

Wednesday, 16 November 2011

Day 41–Family

Yesterday I had my appointment at Liverpool. Every was fine and they have reduced some of my tablets again. So far everything is going to plan. The results from the second culture test from my line was back and showed that both lines were clear and OK, so no removing of the line – Yippee.

Early evening Nigel and his partner Ann came over. It was really good to see them and have a laugh. Charito was working (as usual) but then when she was home she cooked for everyone. What a wonderful wife she is.

We had a lovely curry. I enjoy the curries, because is one of the things I can actually taste. Not only that, it actually tastes like the things it’s supposed too! They had to travel back over to Barnsley , so they didn’t stay too late as it was getting a bit cold and it would probably be frosty or at list foggy on the way back.

I had a nice surprise today when Amy came around to give me some school photos of the the three grandchildren. For once the pictures are actually OK. Last time Jason the youngest, looked like he was just dropped like a sack of potatoes into the photo, lying on the table. This time they are all looking at the camera and smiling (sort of). I was also given a picture of them on a key ring, so I can carry it around with me every where I go.

I’m feeling good today, as I was yesterday. I’m still trying to drink more water.

I have another appointment on Friday, but that is just for bloods to be taken, I don’t have an appointment with the Doctor, so that’s another good sign of things progressing in the right direction.

Saturday, 12 November 2011

Day 37–Gumbling Temperature

The last week has been a bit of an odd one, sorry for not blogging, but I haven’t been well off and on. It’s not been anything serious, my temperature has been going up and down and peeking now and again at 38, what the doctor called a grumbling temperature.

The hospital took cultures from my line and discovered I had a bit of an infection, but so far the results are showing it isn’t that bad and I don’t have any serious effects from it. At the beginning of the week I had a headache and a bit of sickness, but again only slight.

They have took cultures again yesterday (Friday) and hopefully this time it will show clear. I will have to wait till my next appointment on Tuesday to find out.

They hare reduced a couple of tables to try and balance things out as my body excepts and adjust to accepting Nigels Bone Marrow.

I’ve had some good news, I had a test a few weeks ago called the Chimera test (of which there are different types) the results from this test showed that my T-Cells (CD3) which are the cells that help fight against viral infection are now at 89% and another type of cells (CD13) that also helps fight against viral infections are at 93%. So that shows that the cells I have had from Nigel are now working on fighting infections.

On a non medical theme now: Nigel coincidentally had an appointment at Liverpool yesterday, so it was good to see him. He had to get up at 4am to be at Liverpool for 10am, so he was very tired after the journey and couldn’t wait to get home and relax.

Another good surprise was that Paula and Bernard turned up as well and as usual we had a good laugh. We got a few looks from the other patients for laughing so much, but I would rather be happy than miserable. I think I will get some T-Shirts made with the slogan: Yes I have CANCER, but I’m ‘not dead yet!’

It was good to see everyone and cheered me up as I haven’t really spoken to anyone properly for the last few weeks.

I hope the next few weeks just keep getting better. I slept in today till 11:30am I still have bags under my eyes as I haven’t been sleeping properly in the night. Hopefully I will be able to get back into a proper sleep pattern.

Monday, 7 November 2011

Days 30 & 31–Temp and 2 Years

Although I did write something on here on the 30, It was to cover day 29. I think I was too sleepy and shaky to recall that it was the 5th of November, not that I love Guy  Fawkes Night, but rather it was two years exactly that I was told that I had cancer. So for the last two years I have been in treatment. The first year to get my first transplant using my own stem cells. I was told just before Christmas 2010 that it didn’t work and started my second treatment straight away which was very intense and as you all know I have just had my second transplant.

I’m hoping that this one has worked, as they wont know properly for another couple of months, this time I’m hoping the tell me that it has worked well and I can enjoy Christmas for once and start to  have some kind of quality of life!

Saturday started off OK but as the evening went on my temp started to climb it didn’t go tremendously high, but it just touched 38c as I went to bed. So to cool down I slept with the covers off me and put the fan on that Jody (my wonderful next door neighbour, who I call my sister) gave me. I left it on all night and kept checking it through out the night. Charito goes to the toilet about a million time a night, well it feels like that anyway. She made sure I checked my temp in case it had gone up any further, but fortunately it started to come down and by morning it was at about 37.2 which is OK. I kept monitoring it throughout the day, but it was normal, so I didn’t worry about it. I’m not sure why it went up and if it stayed at 38c I probably would have had to go into the Liverpool hospital for them to keep an eye on me. I will mention it to the doctor tomorrow at my next appointment.

Sunday was spent relaxing with Charito and watching lots of the Fringe episodes back to back. It’s one of the best series I’ve seen. It’s a bit like the X-Files and keeps you wanting more with each episode. I’m coming to the end of series 3 now. I hope series 4 is available soon, as they only have series 1,2 & 3 available on BT on Demand.

For the first time this winter we have had a bit of frost overnight only slightly, but it felt like the proper winter had started with it being so cold.

Saturday, 5 November 2011

Day 29 (Yesterday)–paraprotein shaking and tired

I didn’t write this yesterday, which is Day 29. I’m writing this now on day 30 and it’s 8:30am.

I was at the Royal Liverpool Hospital yesterday and had my bloods taken. Once the bloods were done I went down to the clinic to see the Doctor. Now I thought I was to go to J-K clinic which is were I went on Tuesday, now when you go to J-K clinic, you just sit and wait for the doctor to come out after seeing the the last patient, there is no receptionist to ask. So I sat down and waited and waited some more until it got to the point were I thought this isn’t quite right. So I knocked on the doctors door and opened it and nobody was there. I went around the corner and into another room where there was a doctor, but not one of mine (at least I think she was a doctor) I asked if Doctor Salim was running a clinic and she had no idea.

I went back upstairs and asked the nurse if I should be on J-K or G clinic and she said, oh sorry it’s on J-K on a Tuesday and G Clinic on a Friday. I didn’t mind the waiting and the confusion as I still had to wait for my bloods to come back, which takes about an hour.

I went down to G clinic and they had no record of me and had to go and asked Dr Salim who told them that they would fit me in with one of his colleagues. The then had to find my notes as they didn’t have them. Eventually they found them up on 10z where I had my blood taken and they were sent down, 10z being on the tenth floor and G clinic on the ground.

When I got in to see the doctor, he went through the usual question. Also as usual he told me that I need to drink more as my urea test is showing low.

With him telling me this I knew that my blood results must be back from today. Last Tuesday I had the test to tell me what my paraprotein was. He brought the results up on screen and pointed out that they are showing 200 (OMG). Thank goodness though he was telling me the Kappa Light Chain reading. I said that doesn’t mean anything to me, as I’m normally told the paraprotein level, after him giving me a little speech about the Kappa Light Chain reading, I had to ask again does he have the paraprotein level. Eventually he told me that it was 55. If you remember prior to my transplant it was in the 20’s so it has gone up over double. Thankfully though he told me that it was too soon to tell as it will go up and down and then it is the average of the Kappa Light Chain and the Free Lambda over a period of time. He reassured me that it was nothing to worry about. I wasn’t really convinced, but I will have to wait probably another couple of months before I can find out for sure. I suppose I was asking too much to find out after only 5 weeks of having a transplant, most people are still in hospital still.

Now onto the other issue I’ve been having. I’ve been very tires as I mentioned in my other blog post. I’ve also had the shakes, with my whole body shaking at times. My hands would twitch as well. It was making it difficult to type or use my Tablet computer as my fingers would involuntarily press random keys and tap the screen. I felt as though I wasn’t in control. I told the Doctor about this and he told me that it was quite normal and I would feel very tired for several months as my body needs to recover.

cyclizineWhen I got home I was taking my tablets the first ones being the cyclizine which is the new anti-sickness drug they gave me last week. That’s when alarm bells rang and the connection with when I started to feel very sleepy. I looked at the label on the bottle and it says it may caused drowsiness and a warning not to drive. Mmmm that’s also the time the shakes started, so I didn’t take the cyclizine, but too the ondansetron instead, which is another anti-sickness that I know I’m ok with. After taking my other medications, I went strait to the computer to find out what side effects the cyclizine has. Although on the first medical sites it didn’t list any of the shaking, I then found a user forum with feedback from patients who had been on the cyclizine. There were a couple where they were saying that it worked OK, but there were more that were saying not to touch the drug as it nearly killed them! This is the link so you can read it yourself, rather than me list them.

Cyclizine user experiences

I decided after reading this that I would no longer use the cyclizine and go back to the Ondansetron which I felt much happier with. The result this morning, well I no longer have the shakes and don’t feel as sleepy as I have done over this week. So hopefully I will have a better week this week and wont be shaking or having to go to bed all of the time. All just because of a drug that I used as an alternative, to see if it worked better.

I will blog latter on today, which will be Day 30 and let you know how I feel after having a day without it.

Thursday, 3 November 2011

Day 28 Post Transplant–Very Tired (Day 27 as well)

I can’t believe how tired I am. I don’t normally fall asleep in the chair, but over the last couple of days I have been dropping off to sleep while watching TV, which isn’t like me at all.

Yesterday I was too tired to do much, hence I didn’t even get to blog, I went to bed instead!

I’m having trouble staying awake and concentrating on anything at the moment. I’m just so tired, I want to sleep all of the time. I think I could sleep most of the day and night at the moment.

I’m forcing myself to do things, like writing on the blog, just to keep me occupied so I don’t fall asleep.

On another point, Sandy raised a point via Twitter:

sandy_parot@sean_tiernan Aren't you at day 30? It will be another cuppla weeks before you begin to see real energy upswings, I suspect. Intending it!!

The way the days are worked out is the day you have your transplant, they call Day 0 and each day after is consecutive starting at day 1. So my transplant occurred on the 6 October then day 1 was on the 7 and so on to today which is 3 November, Day 28.

I hope that clears things up.

Right I’m off, lets hope I don’t fall asleep and hit my keyboard with my head!

Tuesday, 1 November 2011

Day 26 post transplant–Hospital Visit

I was off to the Royal Liverpool Hospital again today.

Nothing really exciting happened, I had my blood taken, dressing changed and it was fortnightly (shouldn’t that be fortdaily?) dose of Pentamidine. After my bloods were taken and there was a lot taken today as they took blood for SFLCA, which is a test to find out about various things, including my paraprotein levels. Also they took a Chimera test, which will show if my DNA has changed to Nigel’s yet.

I’m back again at Liverpool on Friday and will know my paraprotein level then. I won’t know the results of the Chimera test for about two weeks, as that takes longer for the results to get back.

I waited for my blood results to return after seeing the doctor on clinic and getting a big bag full of tablets to replace the ones I had used at home.

They results are:

HB: 9.3
PLTS: 103
WBC: 2.7
Neuts: 1.2

As you can see my Neutrophils are very low, there was a discussion to give me some GCSF injections, but they decided to see how it was on Friday, before doing that.

Getting the Taxi/Ambulance home was a bit of pain today, the driver who took my had to go to another job and I had to wait nearly an hour at the doors for another car to pick me up. I was supposed to meet him outside, but after a while standing up outside in the cold I decided to go inside and keep an eye out for him through the window wear it was warmer. I still very tired though standing up for that long and couldn’t wait to get home.

Once I got home, I made something to eat and sat down in front of the TV. I couldn’t keep my eyes open though and kept nodding off in the chair, which isn’t like me.  So I decided to go to bed for a rest.

I hope tomorrow can be another good day, I suppose like always I will just have to wait and see what tomorrow brings.