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Wednesday, 20 October 2010



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.



Saturday, 16 October 2010

Mistake and MRI results

The Arival of Autumn

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.

Tuesday, 12 October 2010

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.

Monday, 11 October 2010

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.

Valentine Swan

skiffle in chester eye have a thought candle light thinking about my wife deep in thought one

Saturday, 9 October 2010

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.


Saturday, 2 October 2010

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.