Doctors costs

I’m really annoyed! I have just been to my local doctor to pick up an insurance document that I needed signing so that I can reduce my outgoings and they have told me it is going to cost £10. I dropped the document off over a week and half ago and it has taken this long to get them to sign it and now they are wanting paying.

I think it is ridiculous that Cancer patients who are trying to reduce their outgoing costs have to pay the very people who are supposed to be looking after your welfare an amount for their signature. Sure this should be considered part of the service that we already pay for and not something that Doctors can make some extra money out of particularly for those who may be dying of cancer!

Unfortunately for them I didn’t have my wallet with me, so they gave me the document and said to pay the money the next time I am in or passing by.

The person I needed to speak to about it wasn’t there, but I will definitely be having a word with someone the next time I go. I did try to complain to the receptionist, but she was only standing in for the person that was away.

I supposed I should be thankful that it is actually signed I they gave it to me without paying the amount, although I would have like to have seen them try and get rid of me without giving me the document ;-)

Getting Closer

Well my Stem Cell insertion day is getting closer. I spoke to Edwina at Liverpool last week and she told me that she would know the bed availability at my appointment on the 2 July. So fingers crossed I should finally know the date when I go in.

On the 2nd I’m having various blood test and ECG to make sure that my body is ready for the process.

I really want it over and done with now, it has been a long road to get here, nearly nine months from being diagnosed. Hopefully after this I will have a few years before it starts to come back again and I have to go through this again.

Pentamidine Day

It was my monthly trip to Chester Hospital for my Pentamidine today.  I have to go in the afternoon when nobody is around so that others can avoid breathing the fumes in. They set the nebuliser up for me in the usual little room that they shut me  away in, but I couldn’t get started straight away as there was a problem with the extraction system.

The nebuliser attaches to an extraction system on the wall which has a  valve that should raise a red indicator when to a certain level when working correctly, unfortunately it wasn’t. After a bit of running around (the nurse not me) and a few phone calls later, I was told that someone would have to come and look at it, to see if it could be repaired. I could have come home and gone back again another day, but I said I would wait a bit to see if someone turns up. I sat down in the waiting area expecting to have to wait quite a while. To my surprise someone turned up within 2 minutes! Although it wasn’t working properly, it was extracting enough for me to use it. So it was sorted quite quickly and had the Ventolin, the first bit of the process to open up the airways. That takes about 5-10 minutes.

After the Ventolin I have the Pentamidine, which is the really yucky stuff and my throat gets really sore and dry. I can drink water while on the machine but it still makes my throat feel like sand paper.

I have been drinking plenty of water and sucking mints as that seems to help. The taste and the dry throat normally stays with me for about 5 hours, but eventually wears off. At least it is better than getting Pneumonia, which this process will prevent (hopefully).

MyelomaUK sponsored head shave

Chris and Jodie Sanderson of CJS Couriers (who also happen to be my next door neighbours) managed to get sponsorship from their customers and friends over £200 pounds.

My brother Nigel and Tony Duffy also got involved and are donating another £100, so in total we received over £300 that is being given to MyelomaUK to help towards finding a cure for Myeloma.

We had a few friends around and as the weather was good we decided to cut their hair in the garden. Tony had shaved his the day before so it was now time for Chris and Nigel.

So thanks again everyone for getting involved and for all those that have sponsored the guys. Enjoy the photos below.

I have only added a few of the pics and of a small size, if anyone wants larger ones I have them. If the others want to send me their pics I can do another post of them – thanks.

The Cut

Chris:

Nigel:

 

The Close Shave

 

  
 

All done..

 

 

   

 

All four of us together…

 

MyelomaUK Sponsored head shave

My next door neighbour Chris is going to shave his head to support MyelomaUK. Chris is looking for people to sponsor him and will be shaving his head this Saturday.

If anyone would like to sponsor him, they can contact him through twitter (chr1ssanderson) or make a donation on the MyelomaUK donation page.

I will post pictures of before – during – and after he is shaved.

Many thanks to Chris (and Jodie) for supporting me and helping to find a cure for Myeloma through donating to the MyelomaUK organisation

Me with no hair

Well I have gone and done it. As my hair has started to fall out I decided to shave it all off, rather than wait for it all to fall out.

Hair loss

Well the chemo is finally taking its toll  and my hair is getting rather thin now. I think I will  just shave it off rather than leave it to get patchy.  I will post a picture later on this evening once I have shaved it so you can have a laugh. As I’m typing this I’m having to brush away the hairs off my desk that have fallen out!

Upstairs – Downstairs

I took a few things upstairs yesterday. I had to go up and down a couple of times as I couldn’t carry them all. I had to sit down and rest for a while afterwards. I thought it was the weather and it was really hot and about to have a thunderstorm, but Charito assured me it wasn’t that hot. I was sweating and out of breath. I even took my temperature as I thought I maybe had a fever! It’s hard for me to believe that only a couple of times of going up and down stairs can take it out of me so much.

I am very bored at the moment and tired of waiting for my transplant. It may sound daft, but I just want to get it over and done with now. After months of treatment and Chemo in different forms I just want to get to the other side and start back on recovery and get to some normality (hopefully). Last night I watched a youtube tutorial on taking water shots and came up with the above. I’m not 100% happy with it, but it’s a good start.

Next time though, someone else can get the tripod from upstairs!

Second session of marrow extraction

Turned up at 9am at Liverpool for my second session to extract my bone marrow. The first machine they tried to set me up on wouldn’t work, so after about half an hour I was put on the other one. This one worked ok and the extraction process went ok. I was told that they got 1% marrow from my blood yesterday, which was apparently what was expected. The target is to collect 4% which means that they would have to collect at least 3% today (isn’t my maths good!). If there wasn’t enough today, I would have to come back tomorrow for another session and have more injections today.

I had to wait until my extraction was complete and then for everything to be sent to be analysed before I would know if there was enough. After finishing on the machine, after about three and half hours, they left the line in on my right hand, just in case. I had to wait for another hour for the results to come back. If I needed another session, they would inject me again with the G-Factor and if not, they would remove the line from my hand.

While waiting I had a drink and some biscuits to help me get back to normal (I don’t think they know me that well if they thought I was going to be normal!)

Finally I got the answer I was hoping for and I don’t have to go in again tomorrow. There was plenty of bone marrow this time and it all went well.

I’ve been give a couple of containers to wee into for next time. They have to measure something in the urine over a twenty four hour period. It’s the same test I had in the early stages. They have also arranged for several more blood test for the next time I am there. I have to wait for an appointment to come through the post, which will be about 3-5 weeks. During this waiting time my body can get back to normal (there’s that word again) and get a big stronger for the next stage.

Bone Marrow Extraction

I  started my bone marrow extraction today. I had to be at the hospital for 9am. They took a sample of my blood and sent it away to be analysed to see if there was enough marrow in the blood stream. The results came back that there was enough, but I would also need to go back again tomorrow to have it done again as there wouldn’t be enough from one extraction.

I didn’t get to start on the machine until about 1pm as we had to wait for another nurse to arrive who had been working in Chester! Not extracting bone marrow though as they don’t do that in Chester (so I’m told).  There is two machines in Liverpool and there was woman who like me has Myeloma on the other machine.

They put two needles in, one for the blood going out into my left arm and the returning one in my right wrist. It takes about 3 hours for the extraction to complete and I wasn’t allowed to move my left arm during the process. By the end of it my arm was really aching.

The first two hours was ok, then the last one I started to get the pins and needles effect throughout my body. This is a common and normal feeling during the process. I still have the pins and needles in my hands now, but it is a lot less than it was.

The staff are very nice, but the waiting area could be a lot better. It’s a very tiny room that looks like a bit of a storage room and isn’t really a waiting area. It has a sink, but it reminded me of a little utility room than a waiting area for cancer patients.

It was 6pm by the time we came out of the hospital. I had to wait around for some more injections to be administered of the G-Factor. The nurse injected me on the front on my stomach on the left and right, which hurt. I usually injected myself on my side which doesn’t hurt as much, although it might be just a wimp.

So after a long day, I have to do it all over again tomorrow!