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Sunday, 24 April 2011

Out of hospital

I’ve been out of hospital since Wednesday, sorry just not got around to writing on the blog.

The shingles have dried up and scabs have started to fall off, not pretty I know. The so called Chicken Pox that was never confirmed have cleared up and you wouldn’t really know I had them. After the swab results came back, one confirmed it was shingles (which we knew) and the other was inconclusive. I kept getting told it was impossible to have shingles and chicken pox at the same time, but it did look as though that was the case. Trust me to be unusual.

I moved rooms for the last few days I was in hospital, this one had a shower of it’s own, which was much better, although it was over the other side of the ward and they treated me a bit like a leper because of the shingles, even though I kept telling them I was no longer at risk as the doctors had confirmed that they were no longer infectious and they were only keeping me in the extra few days to make sure I was ok on the tablets as they had taken me off of the drip.

I has some good news while I was in hospital for a change and a bit of a shock as well. I was told that my PAD treatment was working really well and my bloods had normalised (I need to clarify what he meant by that) and they are going to refer me back to Liverpool for another transplant, this time though with donor stem cells.

Although this prolongs my treatment until I can have some kind of normality I think it will be worth it to try and gain some extra years. I was asked about my siblings for donor stem cells and will arrange for them to be tested for a match. I’m not sure what the process is for matching stem cells and if that involves having the bone marrow biopsy as well as usual blood test. I will have to ask at my next appointment, which isn’t until Wednesday. We have decided to hold off the next PAD cycle until after the bank holidays. It will give my body a bit of time to recover and we will then have the necessary number of working days in the week to start and stop the doxorubicin.

for those that are wondering how my Grandson is, he is now walking ok although they still don’t know whey he had the seizure in the first place, they have put the walking problem down to the Chicken Pox he had.

Sunday, 17 April 2011

A bit better but

Im feeling a bit better today, I managed to get some sleep from about 1:30am till 5:45am.

I've not taken my pregabulin (lyrica) today. I've been finding it difficult to go for a wee over the last 24 hours and after doing some self diagnosis put it down to the pregabulin as it seems to be a common side effect. So Im going to see how i cope with the pain without it.

My blood count was low yesterday so Im supposed to be having some blood today, but not sure when. My plates are 30 which is ok but my neutrophils are low at 0.6.

Saturday, 16 April 2011

A short story

As i don't have a computer with me in hospital, Im going to try and do some short blog posts. Although they always seem to end up as long ones. This one particularly.

I thought for this post i would write a little comparative story, so here it goes.

The person in uniform checks themselves over before approaching the small room. The uniform is neatly pressed with all the tools and accessories neatly clipped in place. A set of pens adorns the left chest as if to replace some medals or awards that were never given although in this persons mind should have been recognised many years ago and they shouldn't have to be pacing these corridors but should be of a higher rank earning twice the amount there on now. They do one final check before open the door. Ah the last thing needs to be added. The smile of persuasion!

They open the door and greet the person inside, a lone figure clearly in pain as he winces to try and turn to face them. His face covered in marks of his suffering and further shown by the lines under his eyes although these were overshadowed by the many lines in this mans face that seems to hide past pain and suffering.

The person in uniform gave no remark on his face or  the large red oozing patch on his side.

With the persuasive smile in place they ask for the mans possession. The man knew that he relied upon these possessions to manage the pain and suffering that he was experiencing. His wife had lovingly travelled many miles to obtain them and get them to him to eliviate the pain as soon as possible and now he was being asked to give them to this stranger with the smile.

He wasn't about to give them up so easily. Why couldn't he keep them himself. The person in uniform already had the answer. They had been asked the same question many times before, in fact from this same room only a few days ago, of course that person is no longer here! If you hand them over we can make sure they are looked after and secure, just in case anyone comes in that we don't know! That 'we' don't know. They were using the psychology skills they had been trained with, befriend the person, get them on your side.

It worked, although hesitant the man slid the packet that he clutched across the table, slowly releasing his grip. The person in uniform reached out and took the packet and at the same time as if to cheer at winning the mental battle, they let out a deep sigh of achievement. The man watched as she moved across the room, it was too late now, or was it? He thought about shouting out or leaping forward to get them back. It was too late the person in uniform had already reached the box on the wall. They unlocked it and placed the packet inside, closed it again and returned the key safely in a pocket of their uniform dedicated for this purpose.

Knowing their mission had been accomplished they turned around and marched towards the door, leaving the man with a few last words. This time though there was no smile. 'I will be back in a few minutes'

What were they coming back for? Why hadn't he been allowed to open and use the packet that his wife had travelled so far to bring. No sooner had he thought about these things when the door swung open. No polite knock this time... Right i have a list of things you can have. She read the list out and as she did she placed each item carefully in front of them on a trolly especially prepared for this purpose. It was a short list and missing some important items. The same items that were just locked away. The man asked for some of the other items that he owned to be returned to him. The person in uniform looked at him and with a wry smile said unfortunately if it isn't on the list you can't have it. The man tried to reason with them... But i use them every day. The person in uniform apologised and said unless their superior would authorise it they weren't going to unlock the box on the wall.  Recognising the name of the superior a sigh of relief came out of the mans mouth. Hope at last as the this persons superior was the same man that issued these small packets that would relieve his pain. The person in in uniform said they would try to get the list changed.  Turning around they left. The door closing behind them only to return a few hours later. It was too late.... The man was still there, but this time in much more pain. It was the same man but something was different. Maybe it was the few more lines on his face  or the trust in peoples smiles was gone. Either way it was going to be a few more hours before his pain was bearable again.

Friday, 15 April 2011

Stuck in hospital.

I came into hospital yesterday for my velcade but ended up being admitted. As usual i have to be different, i have come out in spots over my face and body that look like chicken pox. Now the question is, can you have chicken pox and shingles at the same time!

There seems to be a debate going on as to if that is possible and swabs  have been taken along with various bloods and sent over to Manchester. I have had a person from infectios diseases come and see me who has spoken to another specialist who says it isn't. So i will just have to wait and see what the results come back and show in the next few days.

In the meantime i have been admitted into a side ward with a big yellow sign telling people i am diseased! Im  having anti virul and antibiotics administered via drip.

I will probably be in till next wed but could be out earlier.

I already have a few stories to tell about being on the ward overnight, but i will write about those later once i can get to a proper computer to type on rather than my phone.

Wednesday, 13 April 2011

I love drugs

Misty Morning

I’m feeling a lot better today thanks to some new pain killers. I went for my Velcade on Monday and explained to the doctor how painful it was over the weekend. He examined the shingles and was pleased at how effective the antibiotics have worked, as the shingles had already to started to scab over (apparently that’s good). My blood results came back ok, although they had dropped from last week it was to be expected, but still ok for my Velcade. If the Valaciclovir (antibiotics) hadn’t worked, they were going to keep me in to give me another antibiotics through my hickman, but as it is there working ok. To be honest I wouldn’t have minded staying in hospital, which is not like me! I’ve felt so bad and in pain that I just wanted to try and sleep it off and get someone else to look after me.

After I had explained the amount of pain that I was in he debated for a while and then decided to give me a combination of things. He said to continue taking the Paracetamol (mmm sweeties) and he gave me some Codeine Phosphate as well as another drug that is used for epilepsy, Pregabalin (Lyrica). I don’t have epilepsy, its used because Shingles effects the Nervous system, hence why so painful and the Pregabalin effectively turns  off the signals from the nerve endings that sends the message to the brain that says ‘ scream this hurts’ .

It still stings to the the touch and having clothes rub against it, but it is nowhere near as painful and the pain now is just a dull ache (until the drugs wear off). I have to be careful though as the mixture of drugs could make me drowsy. I’m glad it says drowsy and dopy, as nobody would notice if I looked a bit dopey! So if you see me driving down the road, run! just in case I fall asleep at the wheel.

Sunday, 10 April 2011

Bad week

This is the first time that I have turned on the computer for a few days….

I’m going to keep it short – I’ve got shingles, but I’m sure there is something else wrong with me as well. I can hardly move, although today I forced myself out of bed and into the shower to help make me feel better and it seems to have worked, hence I’m writing here. I have shingles on the right side of my stomach from the front to the back. It is uncomfortable to sit in the chair and leaning forward is really painful. The only time I can get a bit of relief is when I’m sleeping, so I’ve been taking paracetamol and trying to sleep as much as possible.

The week started off with me having constipation, so my stomach was hurting at the start, then once the shingles started to show on Tuesday as a bit of a red mark and then by Friday it had spread from from to back; it was difficult to go to the toilet because of the pain, although I did manage it in the end. Now as I mention, I’m not sure if it is just the shingles that have been so painful or a mixture of constipation (or at least my stomach hurting afterwards) and shingles. I’ve not eaten much and moving around is painful.

It’s typical that the only good weather we have had so far this year and I’m stuck inside in pain!

Another bad thing that has happened this week is that my Grandson Brandon has been ill. All three of the Grandchildren have had chicken pox (not sure if that is where I got the shingles from as there is lots of it going around, even in the hospital someone else has had shingles, so I can’t blame them), but Brandon had a seizure at the beginning of the week and the day after he couldn’t walk properly. They have been in hospital as well trying to arrange a CT scan, but there was a problem with the Oxygen monitor if they sedated him (he’s three years old). Last I heard, the doctors aren’t too concerned, as it it quite common after chicken pox. I have to say though it might be common for a doctor, but for a concerned parent they need a little more reassurance than ‘it’s quite common’ especially when your child can’t walk the way the used too!!!

My CT scan last Monday seemed OK. No alerts or concerns have been raised over it, so I’m pretty sure it was normal.

I’ll write more when I can and not in pain. I’m going to try and get some food down me now to get my stomach working again.

Sunday, 3 April 2011

Enjoy Yourself


Enjoy yourself, it's later than you think.
Enjoy yourself, while you're still in the pink.
The years go by, as quickly as a wink.
Enjoy yourself, Enjoy yourself,
It's later than you think.

You work and work
For years and years
You're always on the go.
You never take a minute off,
Too busy making dough.
Someday, you say, you'll have your fun
When you're a millioniare.
Imagine all the fun you'll have 
In some old rocking-chair.

Enjoy yourself, it's later than you think.
Enjoy yourself, while you're still in the pink.
The years go by, as quickly as a wink.
Enjoy yourself, Enjoy yourself
It's later than you think.

You're gonna take that ocean trip
No matter come what may.
You got your reservations
But you just can't get away.
Next year, for sure, you'll see the world,
You'll really get around;
But how far can you travel
When you're six feet underground?

Enjoy yourself, it's later than you think.
Enjoy yourself, while you're still in the pink.
The years go by, as quickly a as wink.
Enjoy yourself, Enjoy yourself
It's later than you think.

Get out and see the world...

You worry when the weather's cold,
You worry when it's hot.
You worry when you're doing well,
You worry when you're doing not.
It's worry, worry all of the time,
You don't know how to laugh.
They'll think of something funny
When they write your epitaph.

Enjoy yourself, it's later than you think.
Enjoy yourself, while you're still in the pink.
The years go by, as quickly as wink.
Enjoy yourself, Enjoy yourself
It's later than you think.

Snider Todd

Oops & New Start

20110401_0049_Square After getting told off for my last blog post (see comments), I thought I should write something today!

I am still here and NDY – I still have the pain in my Chest, but it isn’t as bad. I’ve had a phone call on Friday to tell me that I have an appointment for my CT scan on Monday at 6pm. That means that I will go the hospital tomorrow for my Velcade and Doxorubicin as well have my blood test and any bloods and Platelets that I need prior to starting cycle three. All of that depends on the results of my blood count and if my Neutrophils are high enough to start, if not they will postpone another week while my body recovers (hopefully). So tomorrow will be a very long day at the hospital if I have to have everything done tomorrow, with a start at 9am and not finishing to at least 6:30pm/7pm. I should get a couple of hours prior to the CT scan, but it wont be worth going home, only to travel back!

I’ve been busy this week working on my Photography Business – Yes I’m starting a business as I’m NDY. They website is now officially live, although I’m still working on it when I can to add more images and the ability to buy online will be added soon, so you can buy any of the photos I have taken in various formats, such as Gallery Framed Prints or Canvas as well as other types. I will also be adding package prices for studio photo shoots and as well as commissioning prints unique to you. For example if you send me a photo of your decor where you want the photo to be I will take some photos of flowers that would match in with your decor or use your favourite flower and match it in. I also have a few other ideas that will be added when I can. If you have an idea or something that you have always wanted, just let me know and I will see what I can do. The web address is easy to remember if you know my full name, its 

With starting the business I obviously can’t do as much as I want at the moment with having to go the hospital most of the time during the week and not knowing what days I’m going to be at home or at the hospital but I’m not letting that stop me. At the moment I’m only doing the Portrait shoots at the weekends or I know for definite that I’m not at the hospital. On the other days I’m doing as much as I can when I can. Hence the reason I haven’t written much this week and I apologise to anyone that was worried about my last post and then not writing anything since.