Hospital appointment

I had my hospital appointment today, it’s been the first real update I have had since having my transplant. They weren’t able to give me a proper result of my para-protein as it will take a few days for the results to come back. However the long and short of it is that it doesn’t look like the transplant was successful. I had an appointment (by mistake) at Chester a month after my transplant and the initial result from that are that the para-protein has gone up from what it was prior to the transplant. They don’t expect it to have come down and  I wont know for definite until the 12 January when I have another appointment. I told him I felt like I was in a bit of limbo not knowing what was happening for the last three months and that’s when he said that it looks like it hasn’t worked. There are three options available that he will discuss in more detail once we have the results on the 12th, these are -  another transplant, this time using a sibling (if compatible). More Chemo therapy to see if they can control it but a different type and the going on clinical trials to try something new.

I’m not making any decisions at the moment until I know for sure that it hasn’t worked (which at the moment it looks like it hasn’t) and then find out more details and side effects etc for my options.

So it’s looking like another good year for me!!!

High Temperature

I’ve had this sore throat and cough now for just over a week. Yesterday I felt really bad and took my temperature. It was 38.2. Now during my chemo if my temperature went above 37.5 I was to call the hospital for advice. I wasn’t really sure what the best course of action was as to who I should call. I didn’t want to bother the ward if I didn’t have to, when the oncology unit is closed I had to call ward 40 for advice. I knew I had to get my temperature down so I put the fan on blowing cold air on my and started drinking cold water. I also took some paracetamol as that brings the bodies temperature down.

I decided to go through the NHSDirect help line first. Thinking they would be able to give me the initial advice before contacting the hospital. I called the number and after about 10 minutes waiting in a queue I got through to a man that asked me some basic questions

(TIME: 22:20)

- Name
- Date of Birth
- Post Code
- First Line of address

Then the symptom:

- I have Myeloma cancer and had a stem cell transplant on the 26 August and my next appointment at the hospital isn’t until the 29 Dec.
- I’ve got a cough and sore throat and my temperature is 38.2
- I’m not sure what I should do as previously I would have contacted the hospital direct. I put a fan on and taken paracetamol as well as drinking plenty of water.
- Should I go into Accident and Emergency? (thats what I had to do last time)

There then followed a number of question:

- Can you move your chin to your chest? (Yes)
- Any difficulty breathing? (Only when I lie down but nothing major)
- Can you look at the light OK (Yes)

‘OK Sean I’m going to refer you to the nurse that is on tonight, I have your number and she will call you back. Unfortunately they are very busy tonight and it may be up to 2hrs.’

After waiting the 2hrs and still having the high temperature I was beginning to wonder if it was a bad idea to have called the NHSDirect line, but thought I would wait to see what they had to say, at least I would know what I needed to do.

…. so I waited

…. and waited

… and waited.

I was freezing cold and very tire when finally the phone rang

(TIME: 06:50 – or there about, I was too tired to properly focus on the clock)

Over 6 hours of waiting … finally I would get to find out what I needed to do.

It was a nurse who asked me some basic questions.

- Name
- Date of Birth
- Post Code
- First Line of address

Then the symptom:

this is beginning to sound familiar!

- I have Myeloma cancer and had a stem cell transplant on the 26 August and my next appointment at the hospital isn’t until the 29 Dec.
- I’ve got a cough and sore throat and my temperature is 38.2
- I’m not sure what I should do as previously I would have contacted the hospital direct. I put a fan on and taken paracetamol as well as drinking plenty of water.
- Should I go into Accident and Emergency? (thats what I had to do last time)

There then followed a number of question:

- Can you move your chin to your chest? (Yes)
- Any difficulty breathing? (Only when I lie down but nothing major)
- Can you look at the light OK (Yes)

Did the last person I spoke to actually make any notes!

‘OK Sean I think what’s best is if I refer you to a doctor’

They couldn’t put me through to the doctor so I had to call my local number and listen to the message to find out the out of hours number.

I called the number and the first thing it says is ‘for medical emergencies only call this number…’  mmmm was it a medical emergency? I’ve been waiting over 7 hours now and I wasn’t dead yet, so is it an emergency. I decided to wait for them to answer …. and wait … and wait. I was too tired to do anything else so gave up as I was just falling asleep waiting. I thought the best thing for me to do is to try and get some rest and call my local doctors again in a few hours.

I managed to get to sleep for just over an hour and though I would try the number again. Again a long wait. After much thought I decided I would give up and just ring the hospital for advice.

A lovely nurse Sue was very helpful and after taking some of my details, my hospital reference and my name, she said she would call me back. Now where have I heard that before…. but five minutes later she did call me back and said she had spoken to the doctor and if possible could I see my local GP to see if the infection was on my chest, if it was I would need to go in to hospital. She advised in future though to just call them and not to be worried about asking for advice.

Back to the emergency number again … I finally got through and didn’t have to wait as long this time. I think they had finally got some staff in as it was was early morning. An appointment was made for me at a local doctors for 11:30, not my usual one but close to where I live.

The doctor I saw was really nice and helpful and I’m glad to say it hasn’t infected my chest, but he gave me a course of tablets for the next ten days to help clear it up.

I would have liked to have said that the NHSDirect was a good facility; however after my experience I just found it to be a waste of time and a way of delaying medical care and attention. Next time I will just go straight to the hospital for advice, I have learned my lesson!

Happy Birthday to me.

Yesterday was my (real) birthday. I’ve managed to make it to 45 whoo hoo, maybe I shouldn’t shout too loud. My myeloma birthday is on the 26 August, that’s when I had my transplant.

Charito bought me a new lens for my camera (I love her more everyday…. is love measured by the size of your lens! don’t answer that, unless it is in a sealed envelope with £20 enclosed).

I’m not really one for celebrating birthdays at the best of times, but it was lovely to see my daughter and the Grandchildren. They came over and gave me a lovely present (which I will take some photos of when I have built it, you will have to wait to see what it is). They also bought me a cake with some candles, so it was like a real birthday party but without the jelly and ice cream (mmmmm ice cream).

I haven’t really got used to my new lens yet, but I can see the potential and the difference it makes already.

I’m suffering at the  moment as I think lots of people are with a sore throat, cough and cold. I’m managing ok at the moment although with going to work as well it is really taking it out of me and I still have to have a sleep when I get home. As I’m not on my septrin at the moment, if I think it is getting on my chest I will go straight to the docs – I don’t want to get pneumonia or pleurisy again.

I’m looking forward to the Christmas break and hopefully being relatively ok. I normally have a cold or flu or like last year recently diagnosed with Cancer so this year I’m hoping I will have an enjoyable day.

Here are a few of the shots I took yesterday. The one with the candles Amy took in point and shoot auto mode, once I taught her which button to press!

 

Photo Sunday

I’ve not been too well the last few day, I have a sore throat and dry cough. Normally on a Sunday I have been dropping Charito off at work and then spending a few hours going around Chester taking some photos. Today though I decided I was aching too much and didn’t feel like walking around in the cold, coughing and sneezing so made my way home.

On the way home though I thought I would take a detour down a road I don’t normally go to see what was there. It was very misty and the landscape looked amazing with the sun shining through the mist. So I decided  I would stop off down the lane to take some shots and when I got cold get back in the car again for a warm. I did this a few times and I will definitely do it again. There were pheasants, eagles, horses, sheep, horse and cart; all sorts of things. I didn’t get a chance to take pictures of them all, but now I know that is the type of thing to expect, I will be better prepared.

Here are some of the shots I took, both down the lane and opposite my house.

 

 

Stalking is an art

I met up with my younger brother Nick today. He asked if I wanted to meet up for a coffee, something that I would never refuse if I can help it. So we went into Chester and he bought me a coffee and granola bar. Afterwards I went took a slow stroll over to Chester castle to take some pictures of the so called Chester Eye (looks remarkably like an elaborate big wheel to me).

 

After taking a few shots I walked back to the car. On the way I saw Nick walking down the street; he didn’t see me, so I though, as I have the camera out still I would take some candid shots of him without him knowing. I quickly took a few snaps that didn’t come out as I didn’t have time to set the camera onto the correct settings. So though I would follow him. Now keep in mind that he is taller than me and walks at a pace that I would have called running even when I was well. There was just no way I was going to catch up with him. I lost him as he sped off up the road but with a bit of deduction I worked out that there wasn’t many places he was likely to have gone and decided that Tesco in Frodsham street was my best bet.  I wondered around the shop, camera around my neck in the hope that I would be able to sneak up on him and take some pictures without him knowing. I gave up in the end and decided he must have gone somewhere else so was just about to walk out of the shop when I gave one final glance at the tills again. Aha! there he was about 6 tills up. So I walked within a safe distance, lined up the camera and took a quick shot. An elderly woman standing next to me said ‘I hope your not taking photos of me!’ – No I’m taking ……. just then the security guard in Tesco came up to me and said ‘sorry to be a stickler but you can’t take photos in here’. I couldn’t be bothered to try and explain and just said ‘OK’.

Walked over to Nick and told him I just got told off – He was a bit surprised to see me. I showed him the blurred shots and the final one. Secretly I think he enjoyed having a stalker.

Back to work

I started back to work this week. Three morning, Tuesday, Wednesday and Thursday from 8:45 to 1pm. Although I’m not getting involved in any of the management processes at the moment I have still found it very tiring. All of my body is aching and I have had to go to bed for a rest when I get home.

It’s not as if I have a labour intensive job, I sit at a desk and use a computer, but just sorting through files and going up and down stairs is enough to make me very tired. My concentration at the moment is definitely not what it used to be and I’m finding it difficult to recall all of the things that I used to be able to remember quite easily, such as log on details and web addresses. Maybe I have gone back too soon, but I wanted to try and do as much as I can as soon as I can. I’m not one to sit around and do nothing, I like to keep my brain and as much as possible my body active.

It’s been really good though to actually see people again and not be stuck at home, I have to keep reminding myself that I like the others are there to work and not just for general chat. It’s hard for me to sit there and let everyone else to the organising and arranging things. It’s been nearly a year since I was at work and staff have changed and responsibilities have changed along with the whole ethos of working environment. It’s like starting a new job all over again and getting used to the way things are and trying not to take control but let others do there job.

I’m back in again next week for 4 days and then 4 days leading up to Christmas. HR and I are going to re-evaluate it in the new year to see if I am able to return full time.

Sometimes I worry about myself

I think the chemo over the last year has pickled my brain!

It’s very cold, icy and foggy outside this morning and after having my shower I felt hungry so thought I would get myself some cereal (shreddies today), but as it was cold I quite fancied some hot milk with it.

So I got the jug out of the cupboard, went to the fridge and got the milk poured the milk in the jug and then popped it in the microwave for 3 mins and put the milk back in the fridge.

Bent down and got my a bowl out of the cupboard, picked the cereal up and filled the bowl up because I was quite hungry (another word for being greedy). Poured milk onto them and then went and sat down in the living room.

I had a few spoonfuls and was about to turn the TV on to watch the news when I wondered  …. What’s that noise!! Oh I remember its the microwave I put it on to warm the (slowing down my thoughts as I suddenly realise) milk up for my cereal that I am now eating with cold milk.

I don’t remember putting the cold milk on I’m sure I must have just blanked out for a minute. I had to throw the milk in the jug away.

Oh well maybe tomorrow I will get a warm breakfast.

Loreal For skin – Faux Par

I’ve just seen this new Loreal advert on TV and had to laugh when the tag line is.

For skin that looks dull, feels dry, tight, rough & less firm.

Now thats what I call an advert for men!

 

I think someone in their advertising department may have done this as a joke and it finally got on screen. Either that or a good marketing ploy to get people to talk about it. It was on ITV1 at about 6pm.

Poladroid Pictures

No I haven’t spelt it wrong! Who remembers Polaroid Photos, well now you can bring back all the memories of waving you photos about and the anticipation of the images appearing in front of your eyes.

Polaroid is a bit a of software that is free to download both for Mac and Pcs. You drag and drop your square images (you will need to crop them in your favourite image editor) onto the Poladoid and then sit back and watch as it take a few seconds to spit the image out of the camera. Photo will be on your desktop to watch it develop gradually on your screen. You can of course speed it up by shaking your image (ahh the memories).

There is a Flickr group dedicated to Poladroid where you can drop your daily poladroid image. Why not create a story using poladroid pictures.

You can can download Poladroid at http://www.polaroid.net  they only thing you don’t get with the software is the smell of photo developing …. don’t you just love the smell of Poladroid in the morning!

Here are a few of mine from this morning.

Derk-Jan makes me laugh!

On my last post to the blog (the one about the things I learned today) a comment has been left by Derk Jan, letting me know how he loves my writing. I’ve just popped over his blog and couldn’t stop laughing. I think he has the same sense of humour as me (poor guy). He has numerous quotes and sayings on his blog. If your feeling down and fancy a laugh go take a peek.

Derk-Jan is a young guy who has Cancer but describes himself as a random idiot (he should fit in ok here then!)

Derk-Jan blog can be found at Derk-Jan.com.

Oh and thanks for your comment Derk-Jan it’s nice to know people are actually reading and enjoying my ramblings and it’s great to know guys like you who have a sense of humour and have a good attitude to life.

Things I learned today

1. Ice is slippery

2. Rubber slides on ice

3. Alloy breaks easily  when sliding inside a rubber tyre and hitting a curb stone

4. Wheels made of alloy are expensive at £200 each.

Can you guessed I slid on the ice in my car. I wasn’t going fast at all turning into the my own road off the lane after dropping Charito off at work at 7am in the morning.  Aren’t I considerate and getting up early to take Charito to work rather than letting her ride her bike in! Anyway ….  on the way I just turned into the corner approximately 5 or so miles an hour, if that as I knew it was a bit icy. The car started to turn into the road but then decided it wasn’t going to go all of the way around and slid into the curb with a hefty bang (even though it was slow). The engine cut out (no I didn’t stall it) and the airbag light came on. It must be an automatic thing for the engine to cut off when you have a bump. Fortunately the airbag didn’t deploy. So I turned the engine over and it started ok and the light went out.

Parked up on my drive and went out to a meeting at work later on at 10am. As I drove off I notice that the steering wheel was shaking as I moved onto the lane. I drove it to work but it was shaking quite a bit and I thought ‘I need to get this checked out’ maybe I had knocked the balance or tracking out (not that I know anything about cars, they could tell me the billybingbong needs replacing and I wouldn’t question them).  Anyway after the meeting I thought I would stop off at the Toyota Dealership (where they do all the work on my car) and asked them to have a look at it for me. I told them what had happened and he got one of his guys to take it out for a run as they had cars already on the ramps and already had three people drop in with similar bumps due to the snow and ice. He thought it sound like the maybe one of the balance leads had fallen off (are they next to the billybingbongs I wondered). An the mechanics return I was told that the Wheel was cracked it was unsafe to drive and I would need a new wheel, tyre and possible there more damage but they would have to get it on the ramps for that.

30 minutes later they came back and said there was no damage underneath (phew – I could see the pounds signs mount up there!) and the other good news is that the tyre was fine as well. They had put a temporary wheel on for me and would I like them to order a new one in for me. So hence the two hundred pounds for a new alloy. I’d hate to see the damage done in a proper bump if that was only at low speeds. That £200 pounds is the same price I paid for the car before this one. OK it only lasted me a year, but now I have a good car it cost more for one wheel than a whole car, surely there is something wrong there!!!

 

The meeting at work was about when I am returning – I’m going back to work on Monday part time, finishing at 1pm each day and only doing three days in the first week and then 4 days for the next couple leading up to Christmas. This will see how I go and it will be reviewed starting in January.