Photography

I’m been taking some more shots indoors, as the weather hasn’t been too good. Here are a couple of results. These have been tweaked in photoshops (just a little!)

 

One year on

It is exactly one year since I found out I have Myeloma – time flies.

Most of the year I’ve been having Chemo in some form or other, 7 months in tablet form and a month in hospital with high dose for my stem cell transplant.

How am I doing? Well my last blood test that I had at Liverpool, the results came back ok. Although I was on the day ward as it was supposed to be quicker, turned out to be a much longer wait. Never mind I don’t have to go back there again so it wont happen again. My next appointment is in January at Chester hospital. I wont know until then if the transplant has done what it has supposed to i.e. my paraprotein levels should now be really low and stay low (the paraprotein is the bad stuff in the blood that I don’t want any of). So a nervous wait until then.

I’m waiting to hear back from the HR department at work who are arranging a meeting with my boss or bosses! I’m very  apprehensive about going back and get stressed even thinking about it. Is this the right time to go back ….not sure but I have to try, not the least because I need to start earning some money again; either that or win the lottery!

 

Myeloma Buddies

These are the myeloma buddies that I received from Paula with a congratulations card. I won these by correctly identifying her auntie Ann in a photograph. The card reads…

Sean,

Who would have thought congratulations had so many letters, not me! It’s a good job I didn’t do a smaller card. Anyhoo, even though Saints lost you get two buddies. Hope you like them Paula x

Although you can’t tell from the picture, the letters are made up of plastic buttons with letters on them. The little note around the coloured buddy says: Since you recognise me from the knitting needles last Friday, you  get another Buddy too!  as Paula says the other Friday when I bumped into her in Phlebotomy waiting to have her blood taken she was knitting something multicoloured, which happened to be my buddy. I nearly didn’t notice Paula as she now has hair! The Buddies have pride of place on the shelf next to me and may be appearing in future photo shoots .

Work

I went into to work on Monday to see HR and to talk about a plan for returning to work. At the moment I’m planning to go back in December part time and then January full time, but this depends on how my bloods are doing. I’m back in Liverpool on the 28th and I should know more by then.

It was strange going back in, lots of new face and lots of people have left (no change there). Getting my head into work mode is going to be quite difficult. I’m not sure where I will fit in anymore as things have changed, but I’m sure there will be plenty of problems for me to sort out once I have settled back in.

 

 

Mistake and MRI results

I had an appointment on Wednesday at Chester hospital. It’s the first time I have been back to Chester since my transplant. I arrived at about 9am and had my bloods taken. It was really nice to be back in Chester, it is a much nicer waiting area than Liverpool, nice and bright, TV, comfy seat and lovely staff.  After a short wait I went in to see Dr Lee, he asked how I was doing and after I explained that I was going to Liverpool on Friday to find out the results about my MRI because of my shoulder he asked if they mentioned about my haemoglobin being really low! He said it was seriously low and is a concern, which had me really worried!! He was looking through his notes and asked me when I had my transplant, I told him the 26th, at which he still looked blank…… ‘of August’ I said. He was surprised and flicked through his notes again and then apologised as he realised that he had called me back into Chester too early, he thought I had my transplant in June, as they see people three months after their transplant.

Knowing that it had only been just over a month since my transplant he said my haemoglobin was actually very good for only a month and being anaemic is normally at this stage. Phew! he had me worried at first.

He gave me a printout of my blood results to take to Liverpool with me on Friday, to save me having to have more blood taken and also so I didn’t have to wait the usual long wait in Liverpool for my blood to be taken.

Friday at Liverpool I was walking past the Phlebotomy room and glanced through the window to see if there was anyone I  knew waiting. I had to have a double take as at first I didn’t recognise anyone, but noticing someone knitting I realised it was Paula – she has hair, I nearly didn’t recognise her. I went in and had a quick chat with her and she is doing ok and it was good to see her again.

They were short staffed at the clinic, but I didn’t have to wait too long as I already had my blood results. I got called in by Edwina who is the BMT coordinator,  who was covering for everyone. She is a lovely person and always goes through things thoroughly. The MRI results showed that I have a ‘bulge’ in my spine at t1/t2 which is at the top of my neck. Edwina asked if it was ok to refer me back to Chester to deal with it as it would initially require physiotherapy and it would save me having to travel to Liverpool just for this. My neutrophiles are still low at 1.9 but this could be due to the septrin again which I have started again this week. I have to go in again on the 28th to the day ward on 10z but as for attending the G-clinic, I have now been discharged and referred back to Chester – Hooray!  Dr Lee had already made an appointment for January to see me, which is when they will be able to see how successful the transplant has been in reducing my para-protein. This is the appointment that Dr Lee thought I was attending, so hopefully by then my bloods should be ok and I wont get any shocks.

I’m a winner

A few weeks ago Paula (Feresaknits blog) ran a competition to win a myeloma buddy. Yesterday the results were published and I am the winner!

I will take some pictures of my Myeloma Buddy once I have him/her and post them on here.

Pictures from my phone

I’ve recently installed an application for my Android phone called vignette that allows me to take some stylish images using the built in camera. Below are some of the images I’ve snapped. I’m quite pleased with the way that they have come out.

Grandad Sean

I spoke to Amy yesterday and she told me that Kai had been singing ‘Grandad Sean, Grandad Sean’ (to the sound of postman pat). It’s nice to know that he thinks about me, but does it have to be while he is having a poo on the loo!

I haven’t been able to see the grandchildren yet as between them I think they are going through the medical dictionary to see if they can have as many diseases as they can in as short as time as possible.

Hopefully I will get to see them soon when they are all well.

 

Apparently I’m Degenerate

Well I didn’t need a doctor to tell me I’m old, but apparently after they had reviewed my X-Rays from last Friday, I have ‘mild degenerative osteophytosis’ with disc height reduction. No bony lesions which could cause possible nerve infringement on C4/C5. It’s quite normal for people over 60 to start to get osteophytes, it’s a shame that I’m 44, but hey I don’t like to be norm.  The doctor mentioned that at this stage they wouldn’t consider operating….. good job! but will need to wait to see what the MRI scan shows. The doctor said that I was just a pain in the neck, or something like that. …… seriously she did.

I was a little confused at my appointment on Friday, I got there at about 9am and there wasn’t a much of queue to have my blood taken, so I was in the G-Clinic by 9:15. After waiting an hour one of the nurses said you have been here a while and you bloods aren’t back yet, what time was your appointment. I wasn’t sure, but thought it was about 9:30. She asked at reception and she said it wasn’t until 10:40. I didn’t remember that being on the appointment, but could be wrong. Anyway my bloods arrived back within the next few minutes and Gillian called me in a few minutes after that. (they did ask me what the doctors name was, but I only know her first name). When I got home there were some letters for me, one of them was my appointment, which told me that I had an appointment that day at 10:40. So it wasn’t my memory that was failing, it was the fact I never received the appointment.

Apart from my arm, everything else is ok and my bloods are looking good. I was told that if it wasn’t for my arm, they would be referring me back to Chester, at the moment though I would need to wait for the MRI, which she would chase up for me. My next appointment has been made in two weeks time rather than next week, so I have a week off … or so I thought.

This morning (Saturday) I received I received another appointment through from Liverpool, this time for my MRI scan which will be on Monday morning.

On another point, I’m going to be back on the Septrin again, starting from a week Monday as she wants me to try and get off the Pentamidine.

So at the moment I’m still on the pain killers and have now got into the routine of taking certain ones during the day and another mix at night which gives me about 6 hours sleep during the night. I do have a sleep during the day if I get too tired. I’m hoping that after the MRI I can start to get some treatment, probably physio and finally get it sorted.

Almost famous

To keep myself up to date with news dealing with Myeloma I have set up google alerts for key words dealing with Myeloma. Imagine my surprise when on todays update I saw my own name. This is thanks to Myeloma Beacon

http://www.myelomabeacon.com/links/2010/09/28/my-life-with-myeloma/

The Myeloma Beacon has some great articles dealing with Myeloma and is a good site to follow for anyone wanting to find out more about the disease.

The perfect solution for the winter without hair

I just found this site with the perfect solution for people similar to me who have lost their hair through Chemo or just generally bald for any other reason.

http://www.knitty.com/ISSUEfall04/PATThallowig.html

I have passed this info on to Paula and if you ask her nicely she may even make you one for a small fee. What a great Christmas present they would make.  I think they look much cooler than the general head scarves.

Would I wear one …. If there was one suitable for a man, probably, I’m daft like that. I do honestly think that they look trendy though, especially for young girls who have to deal with hair loss through chemo treatment.

What do you think, let me know?