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Tuesday, 27 September 2011

My first tattoo

I had my appointment at the Clatterbridge Hospital today. It isn’t too far away from me, only about 20 minutes drive, if that. It’s been a lovely day, parked up in the car park and took a slow walk over to the Main entrance, which turned out not to be the main entrance of where I wanted to be. After another walk down the road to another main entrance; it’s a big complex with lots of building, I finally found it.

The people really nice and I was shown to the waiting room where I waited to see the Doctor. She went through the consent forms for the Radio therapy, which I had to sign and then off I went to the planning department.

This is the first time that will have Radio therapy, my last transplant only consisted of Chemo Therapy. I have a test radio therapy on Monday prior to going into hospital for my little holiday. Before that though they have to take various measurement and an MRI scan.

So after getting undressed apart from my underpants, they get you to lie on the bed and take lots of measurements while hugging a pillow with your arms across it that you can’t move. They space out your legs so they are the same distance as your hips and pull you pant nearly off so that they can do accurate measurement, at least that’s the reason the nurse told me! There were about 6 people in the room with me lying on the bed virtually naked. It’s a good job I don’t get embarrassed easily. Not that I think my sexy body would have overwhelmed them with lust somehow!

Once they have everything set up prior to the scan, they mark the position using pen at the top of each leg. Once they are satisfied that everything is correct they make a permanent mark either side, where the pen marks were they tattoo a small dot.

So after 45 years of not having a tattoo, I finally got one. Once I come out of this, I might go and IMG_0003celebrate and get the dot turned into a huge dragon that covers my body …. errrr ok maybe not, but I would consider having a tattoo, not sure what or where or even why really… maybe because I can is a good enough excuse.

The Dead Sea Scrolls

The oldest known biblical manuscript in existence is available online thanks to Google.

From the desert to the web: bringing the Dead Sea scrolls online

The Great Isaiah Scrolls

There are other manuscripts available as well.

Don’t you just love technology.

It’s a shame we can’t go back in time and archive the library of Alexandria before they were destroyed. So much information lost.

However as we all know there is so much information in that there is too much to take in. I love books and I love information. I hope we never lose real book, I don’t think tablets and iPads can replace the feeling of turning the page.

Ecclesiastes 12:12
Be warned, my son, of anything in addition to them. Of making many books there is no end, and much study wearies the body.
- New International Version (©1984)

Monday, 26 September 2011

Good weekend

As mentioned in the previous post, my brother Nigel has been over here for the appointment in Liverpool. Nigel and Anne decided to stay for a few days in hotel near by for the weekend.

We spent some time in Chester on the Friday afternoon after the hospital and then on the Saturday we went for a meal and today they came over for breakfast before we went down the road to visit some shops before they set off back home.

It’s been a really good weekend, spending time with them, it was nice to see Charito laughing and joking with Anne, they get on really well and they never stopped laughing and giggling, they were like two little girls.

The next time I see Nigel will be when I’m getting his stell cells infused in a couple of weeks, I’ve told him he can pop in and see me, i’m sure he will was his hands first.

Schedule for Transplant


My brother Nigel had his appointment over at the Royal Liverpool on Friday.  We thought it was going to be a a general chat to go over the procedure for extracting his stem cells. The person he was meeting with has to be someone not associated with the Royal Liverpool Hospital as they need to be unbiased towards me. I went with him, just to keep him company etc. I initially went into the room with him, but I was told I couldn’t be there had to leave. I think so they could talk openly and I didn’t try to influence any decisions that he had to make. Not that I thought for one minute he was going to change his mind and I know Nigel wouldn’t be bothered if I stayed, but I suppose they have to follow procedure.

I was kept busy while waiting though as we met up with Paula and Bernard, so I went for a coffee and cake with them and had a good laugh about things, as we do.

The transplant coordinator saw me at the coffee shop and asked if I wouldn’t mind signing the consent forms while I was there, so I said I would pop upstairs afterwards to go through it and pick up the schedule that I was going to collect.

After Nigel came out of the meeting, he had to have some tests he wasn’t expecting, ECG and X-Rays etc. Everything was fine though and it was just a matter of the usual waiting around for people to be seen.

I also saw Heather from my local Chester hospital who had been for a meeting about her possible transplant. I let her know that I was going to be (hopefully) stream my transplant live on the internet. I’m not sure if she will watch or it will put her off.

By the time we  got the tenth floor and Nigel had picked up his prescription for the growth factor, the needles he needs to inject himself with to get the stem cells into his blood stream, it was gone lunch time. We still had to have another wait before seeing the Dr to run through all of the schedule and risks that are involved in my transplant. The schedule is below (clicking it should enlarge it) and I have put a link to the PDF of all of the risks and side effects. There are quite a few of them and I’m not going to get them all Confused smile

So what we thought was going to be about an hours appointment turned out to be about 4 hours. We should have known better.


Side Effects and Risks.pdf

Sunday, 25 September 2011

BBC News – Shame on you!

I pay my licence fee to the BBC and have enjoyed the coverage that they have provided both with new TV programmes, documentaries etc, but I am disgusted that they are still hiding what is going on in America at Wall Street.

I have just watch this Video of the young girls being sprayed with mace for no reason at all!. I have contacted the BBC to express my feelings, to them, please tell people what is going on and complain to the media, not just the BBC, we shouldn’t allow this to be swept under the carpet.

Please watch the video, if the Video showed Libya or Egypt, we would be demonstrating, saying that the dictator needs to go because he is turning on his own people. Time to look in the mirror I think!

Thursday, 22 September 2011

3 October admission date

I now know the date I am going into hospital. The 3 October is the day I am will be going in for my transplant. I will be attending the Clatterbridge Hospital at 12:15 on Monday 3rd and straight after that appointment, which is for the test Radio Therapy I will be going over to the Royal Liverpool Hospital where they will have a room ready for me (so I was told). That evening I will be having some Chemo and on Thursday I will going back over to Clatterbridge Hospital for the Radio Therapy also on this day will be my transplant, I’m not sure if this is before or after. I think I will be having the Radio therapy whilst Nigel begins the extraction and when I get back they will start to do the infusion.

I will get the full Schedule on Friday. Nigel has his consultation in Liverpool and I will be going with him. Edwina will be providing me with the full schedule then.

Wednesday, 21 September 2011

Google+ now open to everyone

Google+ no longer requires you to receive an invite. So you don’t have to send me your email address for me to invite you, simple go the and click on the sign up link under the search.

Don’t forget will be using Google+ for what is called hangouts to video chat with with anyone that wants to join in as well as using the livestream that I have just blogged about in a previous posts. So lots of ways for me to keep in touch and communicate with everyone and anyone that wants to join in.

Looking forward to seeing you all there and helping me get through this difficult time. Thanks in advance. I love you all x

Live Streaming Video of Transplant

For those that are interested in what is involved in a Stem Cell Transplant (bone marrow transplant) I am planning to do a live streaming of my transplant from the hospital.

The streaming will depending on a number of factors, so I can’t guarantee it yet. I’m currently not sure how fast the connection will be, as they don’t have wireless I will be attempting it over the 3G network. I will attempt some test streams prior to the day to see if it works.

I’m also not 100% sure of the date and time yet, but will be posting on here as soon as I know. I do know that I will now be in hospital the week commencing the 3 October as Clatterbride Hospital have contacted me to arrange my Radio Therapy. My test radio therapy is on the 3rd and my real Radio Therapy on the 6 at 12:15. I can’t remember if I have the Radio Therapy before or after the SCT. I think it is after which will make my SCT on the Wednesday, but again not sure on these dates, so will let you know.

The live feed will be available here:

Watch live streaming video from myeloma at

Tuesday, 20 September 2011

Conspiracy theories

anonymous_1_500Now we all love a good conspiracy theory, but I never thought I would be involved in one and see it for myself.

Let me explain: Did you know that from Saturday there have been 100’s of protesters on the streets of Wall Street? No? Why Not?

You would think that something as big as that would be mentioned on the news, especially in light of other gatherings that have happened such as those in Egypt and Libya, OK it may be slightly different in that what they were objecting against was there freedom, but the rally in the US is the people of the United States standing up against the corrupt society and banks and saying they have had enough of them making millions whilst other are in poverty without jobs.

There was an article today on the BBC news site about ‘Could Social Unrest Come to America’ well it looks like it is going on right now.

I started to follow this issue on twitter as it was mentioned in lots of my feeds #occupyWallStreet #takeWallStreet #ourWallStreet. The more I was following what was going on the more I was amazed. The peaceful rally has been organised by a number of groups that are unhappy with the situation the US, one of them is called ‘Anonymous’. You may have heard of Anonymous in the past, they have been involved in previous rallies such as those mentioned and also as an hactivist group, taking down websites and targeting big corporations who try to silence the smaller person who fights for what is right.

In the past the media has tried to portray ‘Anonymous’ as some kind of evil organisation, but if people actually take the time to find out what they are and what they are about, then I think they will come to realise that they are the same as you and I. Just ordinary everyday people that are angry at the way the government and corporations of this world tell people how to live their lives whilst creaming millions off for themselves. Anonymous’ ethos is ‘United as One divided by zero’ in other words a group of like minded individuals from all walks of life. To quote Anonymous: ‘Anonymous is a collective of people across the world who, despite their common differences in opinion and beliefs, unite under one common desire for true freedom and a world rid of oppression.

They have a plan, what is it, well it’s easier if you have a look at their web site. it has a good diagram explaining what it is.

Going back to Wall Street, part of the plan of Anonymous is to organise the take over of wall street, which is happening right now! Yes it is in it’s 4th day. So going back to why I’m writing this post, is the question I started to ask myself … why isn’t it in the news. The answer is that there is a complete media blackout on it, not just in the US but also in the UK. It was all over twitter and lots of people contacting the news agencies asking why they are not reporting it, I myself contacted a few people from various social networks asking the same question. Everyone got the same reply, or rather didn’t. They never answer as if it doesn’t exist or isn’t going on. Aljazeera were the only ones that had any information on it but nothing in the UK and US. As it progressed I continued to follow what was going on live through (doesn’t always stream live but most of the time when they are not asleep). Here I was watching it live, so I knew what was going on and I was simply amazed that there was still nothing in the news. Surely something no matter how small, but no nothing.

Now if someone told me that this could happen where both the US and UK sometime don’t report on major news stories and hide important news items when it is suitable for the government or media, I wouldn’t have believed them and brushed it aside as another one of those conspiracy theories. Now however I know it it be true – I have to ask why would they do such a thing. The only conclusion is that they don’t want it to escalate into something much larger, so they are supressing it. If that is the case, then it means that the media and the Governments have some kind of agreement. This just makes it worse though and makes me angry to know that the news we are getting might not be the the whole truth, don’t get me wrong I’m not naive enough to think that everything they tell us in the newspapers and TV is always factual, but I would expect  to be able to make my own informed decision.

Here we are though with news being deliberately hidden from us. How many other times has this happened and going to happen in the future.  Is it right that the Government and Media decide what we should and shouldn’t know. The fact that they are hiding this rally in Wall Street only adds fuel to the fire and proves them right in what they are saying.

The plan is to occupy wall street for a month, it will be interesting to see if the news agencies finally start reporting it, I’m sure they will if it ends up getting violent, then they will blame the protesters and try to make them out as some kind of terrible people. At the moment it is more of a community atmosphere with singing and partying. It is a non violent protest and that’s the way they want it to stay. As we know though from past experiences sometimes others get involved to cause disruption and has often occurred in other countries it is the government themselves who use people pretending to be so called activist to start the violence and disrupt things, so that they can send in the police and the heavies using water cannons etc. They would rather they weren’t their at all so to get rid of them they have to start something so they have an excuse and to say ‘see I told you so’ 

As for me I will no longer rely solely on the main news, we could be missing out on the really important issues. I will continue to find information/news about what is going on from my social sites and twitter, where I am communication with real people. The people who are there right now.

Is this a conspiracy theory, not any longer, not for me. A theory is something that hasn’t been proven. I now know that the Governments and Media collude to restrict news items when and how they want for their own benefit.

Sunday, 18 September 2011

Occupation of Wall Street


I wonder why the Occupation of Wall Street is not on the BBC news?


Friday, 16 September 2011

I’ve shrunk

I had an appointment at Liverpool today for my ECG and peak flow etc ready for my SCT in a few weeks.

One of the routine test they do is your height and weight. I’ve lost quite a bit of weight since I did it last time, which is worrying as I think I’m over weight now, done on purpose those as I know I will be losing quite a bit during my stay, well I did last time. At least it gives me an excuse to eat chocolate and biscuits along with lots of other junk food at the moment.

The one thing I was surprised about was my height. I’ve been 5’9 for many years, this time though I was 5’8 so I have lost an inch somewhere. I’m not 100% convinced until I see it again next time I have my height and weight taken. Maybe it’s one too many showers!

I didn’t have a following up appointment at Liverpool so I asked at the desk if I was supposed to have one as it’s unusual not too. She checked on the system and I hadn’t but is going to speak to Edwina to see when I am supposed to be in next and send an appointment out. The person who organised the ECG was supposed to have done it, but didn’t for some reason.

Anonymous -

Thursday, 15 September 2011

Lenalidomide (Revlimid) Day 4

Well I’m on day four of my 21 day Lenalidomide regime. It is very much like the Thalidomide regime, but without the Cyclophosphamide.

I take the 20mg of Dexamethasone steroids in the morning, rather than at night, it’s much better. I get the shakes a bit and my voice changes a bit on day four but overall I’m ok on them. Feel tired in the afternoons though.

Because of the risk of blood clots and Deep Vein Thrombosis I have to inject myself with the anticoagulant which is the same as the CDT regime I was on using the Tinzaparin on a daily basis.

I’m on the usual bunch of stuff that goes with it, such as the tablets for the stomach, ones for the mouth and ones to stop me getting shingles (again). All these along with my usual pain killers for the pain in my side left from the last lot of shingles I had as well as the neuropathy from the Velcade; Gabapentin, Tramadol and Paracetamol.

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Wednesday, 14 September 2011

Not dead yet

This was a post on my Google+ account and I found it funny so thought I would share it with you here. Don't forget if you want an invite to Google+ then send me an email to and I will send you out an invite. I will be using Google+ during my transplant to chat to people and use the hangout facility to chat on cam with a group of people (that's if I get a good connection during my stay)

Time to say goodbye

Don’t worry I’m not on a downer and thinking I’m going to pop my clogs. As you know I’ve had a quick stint in hospital with an infection in my line. The plan was that I would be having antibiotics all this week to make sure the infection was cleared prior to my STC. However; I called Edwina yesterday at Liverpool to inform of the infection and she thanked me for letting her know as it is the type of thing she needs to aware of. I thought at the time of telling her that maybe they would take it out and sure enough this morning at my appointment they told me that they also had spoken to Edwina and think it is best if they took it out.

So it was time to say goodbye to my Hickman line that I have had in for about seven months. Now I was really worried about it being taken out, but was expecting it to be done after the SCT. I know the last one I had taken out was only in for just over three weeks and had already started to graft in, so after seven months it would be well and truly stuck in. I asked how they would take it out and Laura said she would take it out here now. Using local anaesthetic I asked, no I will just take it it out. She could probably see the concern on my face. I was really worried about it hurting, I’m a bit of wimp when it comes to pain. The last time Laura said is shouldn’t hurt much was when I was first diagnosed with Myeloma and had my first bone marrow biopsy, that was the worst pain I have ever experienced! I reminder her of that.

Prior to Laura having a go at taking it out I had my last dose of antibiotics over twenty minutes in the line and then Laura got down to work. I asked if I could keep the line if she got it out, which she said I could but she would need to just cut the end off to see if there was any infection and for analysis, which I was ok with, the bit they cut off is the closest to the heart and as I had the extra loop in my neck as well, it would still be long enough to make some king of wall display out of, yes that was my plan to mount it on the wall with may a picture and explanation attached.

I asked Laura if she would need to make a cut of in it as she was going to just try and pull it including the colour that holds it in place, which is quite large. She said she would try and pull it out through the hole where the line comes out without making any cuts.

OK she said here goes, can you just take a death breath in, and out and in again. OK done …. err done … I didn’t feel a thing, nothing, nada zilch … All my faith is back with Laura again and I said I would buy her a cake. I honestly never felt a thing and it was out, I had nothing to worry about at all.

The colour unfortunately didn’t come out, but that isn’t a problem, she said it will just come to the surface in a week or two and drop out, she put a dressing on it and that was it.

She washed the line she had taken out and flushed it through, I also asked for syringe so I could give it a good was as well, which she did.hickman line

As I said I want to mount it and make a piece of art out of it with one of the pictures I have of me showing it in my chest.

I’m going to have another one put in again in a few weeks as I need it for my SCT. I’d rather they fit it in Chester and I will be put under general anaesthetic, so I won’t feel a thing this time. They don’t offer that at Liverpool they always do it while your awake, after having two of them fitted while being awake, I’d rather not do it again. Just knock me out and I wake up and it’s done.

I don’t have to go back to Chester again till next Wednesday for my bloods to be taken.

I started the new regime yesterday with the Lenalidomide and Dex and the usual drugs, about thirty tablets in a day as well as one daily injection again.

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Monday, 12 September 2011

Daily Antibiotics

I had my antibiotics today and was told that I will need to have the antibiotics in both lines for the next five days, so I'm at the the hospital all this week. I had to inform Edwina at Liverpool about the infection, which she thanked me for as its importans that they know. Im not sure now if they will use this line as any infection is life threatening. They may insist on changing the line which will be a shame after not having any problems over the last seven months apart from this!

Sunday, 11 September 2011

Today is a good day

I woke up this morning at 5:50am feeling really refreshed and fully rested. It was the first time I slept all the way through the night from about 11:30pm without waking up in pain etc.

I took my temperature this morning at it is back to normal and I felt really good. I took Charito to work, had a shower, re-dressed my line and cut my hair and of course written a couple of blog post and brought all of my email up to date..

I have to go out again soon though, back to the hospital for my next lot of antibiotics, so I might end up being a little depressed, ok not really, but at least a little board as I know it wont be just a quick half an hour. I will also have to wait for them to officially release me from hospital which includes the usual TTO which again forget what it stands for but it’s the something like Something Take Out which is where the sort you meds to go home with. I’m sure someone will tell me what it is. I will find out later at the hospital. I’m probably totally wrong and it isn’t even TTO.  I will let you know later. I may even try blogging again from phone.

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Paraprotein the same–Revlimid time

I was told on Friday that my paraprotein hasn’t gone up in the last week, but stayed the same at 18. Staying the same is better than going up but not as good as coming down obviously (no lude jokes about going down is always better  .. as if you would … and as if I would find that funny)

The docs have had their pow-wow about me and what to do over the next three or four weeks and they have agreed to put me on the new regime using Lenalidomide (Revlimid). I haven’t started it yet, because of the infection I have in my line, but I will be starting it tomorrow if everything goes to plan.

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Saturday, 10 September 2011

Good News

The good news is that I have been let out of hospital, the bad news is I have to go back in again tomorrow. Actually it’s not that bad, I only have to go in to have my antibiotics added to my line for twenty minutes and then flushed out. So I will probably be in hospital for an hour or two with the usual waiting. Now that would be the the easiest and sensible way of doing things wouldn’t it …but… with the usual bureaucracy that happens in all hospitals it isn’t as easy as that.

If I was discharged today I couldn’t go back in tomorrow because there wouldn’t be a bed for me! Yes that’s right I have to have a bed assigned to me as there is nobody on the day wards for out patients at the weekend. So to get around this they haven’t discharged me, my room and bed are still available for me to back into. So although there is always a shortage of beds and I’m not there, the bed can’t be used. To me that seems a waste of resources, all because they have to follow policy and procedures, I really think that if someone did a proper systems analysis on the the working practices and methods they would find hundreds of way of saving money and becoming more efficient. If they NHS is reading this, give me a call I’d love to get involved, obviously for a small fee, but think of the savings you would make. Smile

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After finally getting on a ward at six o'clock, well just after, had a bit of a wait in a chair before going into my room, I finally settled down.

They were very busy on the ward, so it was nearly an hour before anyone came to see me. I didn't mind the wait as it gave me time to settle in. I am lucky enough to have a room to myself rather than be on the open ward.

The main ward has a lot VERY noisy people, one elderly man was shouting 999 all night! So being on my own and wait was acceptable, after i shut the door.

Lanncashire hotpot was nice for tea but didn't score many marks for presentation. 

They put me on a drip of saline, but i think this was more of routine than actually needing it.

They took my obs when I arrived and my temp was 37.2 and before going to it was 36.6 which is normal (normal in the sense of temperature, not me being normal). This morning it has gone back up slightly to 37.2 but I feel much better after having a few hours sleep without a headache.

A lovely nurse came in at 2:30am to give me my next dose of antibiotics. I didn't catch her name and can't remember from last time I was here. She is one of those nurses that make you feel at ease straight away and you can tell is in a job she enjoys. Its a shame not all nurses are the same, but maybe Im expecting too much.

As Im writing this, its nearly 7am on Saturday. The man that was shouting 999 is now shouting hello every 30 seconds. Its so tempting to shout out really loud HELLO. Just to see if he says anything else. I don't think he would though as some the nurses have already tried answering. But it would be fun.

I spoke to Charito earlier and she is missing me, and i am missing her, but hopefully only for tonight.

I will write more later. I really could do with a tablet to write the blog posts on,rather than my mobile phone. That's a hint to Charito, which I think will fall on deaf ears ;-)

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Friday, 9 September 2011

High temperature

Wednesday night after being at the hospital, I started to get a headache. By the morning my head ache was worse and I had a temperature. At about 7am the temp was 38.9 and I was burning up and then i was sick.

Charito opened the window for me and fanning me to cool down. I knew I would have to ring the hospital and tell them, as anything over 38 Im supposed to call.

I didn't want to call until 9am though. If I called earlier I would have had to go into A&E and then go through all of the problems I had last time and up in AMU where they are not used to dealing with cancer patients.

I managed to suffer till 9am and called my usual ward where, as I thought, they asked me to come

So I packed my things ready for a stay in hospital.

I arrived and they put me on one of beds where i could rest.  I had my phone turned off and didn't know that Charito had been try to call me. She panicked a bit and my daughter to see if she could call in to the hospital to make sure I was ok.

After a number of test they decided to send me home with some antibiotics, ratherthan keep me in. Amy turned up just as I was leaving and i had already managed to let Charito know what was going on.

I had to come back to the hospital today for more test and I've just been told they are keeping me in.

I will keep you all updated later as writing this on my phone is quite difficult.

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Wednesday, 7 September 2011

And up it goes again

I had my appointment with Dr Tuegar at the Countess of Chester Hospital. I normally see Dr Lee but he is off on his hols. Today was to find out how my paraprotein was doing. The took the blood test last Thursday and based upon the result we were going to decide what to do over the next few weeks while I wait for my transplant. I've mentioned before about the neuropathy in my feet and that why they didn’t want to give me any more Velcade and over the last fours days I have been taking just the Dexamethasone on it’s own.

The time before last my paraprotein was 12 and before that 10. Well today I was told it was 18, so it’s going in the wrong direction. This puts me in an awkward situation as to what happens over these next three to four weeks while I wait for the transplant.

The plan at the moment is see my paraprotein is on Friday based on the blood they have taken today. Unless something miraculous has happened over the last week with the Dex, this is going to be either higher (which I expect) or at least stayed the same. Then on Friday we will decide which way forward we go. Either stay with just Dex (which I doubt) or go onto Lanolidomide (Revlimid) for a few weeks. If I go onto the Lanolidomide I have to consider the implication that it might have on my body, having something else new, just prior to the transplant as well as it’s effectiveness over such a short period of time. It may not do anything in just three or fours weeks.

So what is the worse case scenario … well my paraprotein could continue to rise prior to my transplant date (first week in Oct) if it rises too much, they may have to cancel the transplant as it wouldn’t be worth doing as the SCT wouldn’t be effective whilst it is still high. In that case it would have to be delayed until we got it back under control again. Hopefully that wont happen though and we can keep it under control over this month and keep it down somehow.

There is no way of knowing if it would have stayed down or gone up if I had started on the Lanolidomide four weeks ago after cycle 6 of the PAD when it was first discussed. I still could be in this situation. In the ideal world I would be in hospital now with my SCT completed on starting recovering (actually in the ideal would I wouldn’t have cancer at all, but I’m sure you get what I mean). The problem is that they only have so many beds and lots of people waiting and you can’t control how long it will take before someone is well enough to go home. I understand the difficulties they have and position that Edwina is in in coordinating all of the transplant. It’s just my usual luck that it’s causing my problems having to wait the few extra weeks..

Lets just say that I would be more than a little disappointed if after all the treatment and pain over the last six or seven months that I have to delay it and try something new Sad smile

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BBC Operation Hospital Food with James Martin

I’ve just been watching Operation Hospital Food with James Martin. James is trying to help the hospital into improving the food that they patients and the staff eat as well as make it a more profitable business.

It was good to get an incite into the type of things that go on and the more people that are aware of the issues which hopefully increase the chances of it improving.

As usual though it seems there is a lot of talking and no proper communication going on and trying to get people to agree to do things is the usual sticking point. I like the way James has looked at the long term issues and involved local supplies and dieticians as well as people on the board, to try and get them to actually meet the front line staff in the kitchen and to get something sorted.

Becky (Reidy) text me about the program as well, so I know that it is something that we patients are interested in and if anything I would have liked more patients to have been involved, not just a person representing them. Someone who has been in and out of hospitals that could justify if the menu needed changing each week or every twenty one days, based upon experience of long term hospital care.

I could see James’ frustration when they were only given £5,000 pounds as an improvement budget and felt his frustration when the CEO of Scarborough NHS Trust announced it as if it was millions of pounds they were investing in it. What can you do with £5,000 pounds, as James’ said a few new spoon and ladles?

The clip from tomorrows programme shows James buying the kitchen a new steamer, which is again frustrating to see that people like James have to invest there own money in a hospital TV programme to improve the NHS for us, when if people just sit down and talk to each and work things through logically they will see that spending money now, investing in good quality food and products and more importantly people, will save money in the long term. Rather than trying to do as much as possible with as little as possible until everything falls to bits and they all start blaming everyone else as to why it went wrong.

Operation Hospital is available on BBC iPlayer and the next one is on tomorrow at 9:15am BBC1

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Tuesday, 6 September 2011

Royal Hospital with Nigel, start of the transplant process

Not long got back from the Royal Liverpool Hospital. Nigel’s first appointment with me to start his stem cell extraction process for me. Nigel had to travel from Basingstoke last night to Barnsley, then in the morning to Chester and then to Liverpool with me only to have to drive back over to Barnsley to pick up his works vehicle and then drive back to Basingstoke (I think that is the journey he’s taken!). I know he has had to do a lot of driving today to help me out and I of course very much appreciate it.

My next appointment is on 16 September and Nigel’s is on the 23 September. The date will be the first week in October (unless something changes). Unlike with my last transplant, Nigels stem cells will be taken and then put into me on the same day. Last time mine were frozen and then put in to me. So I will be in my ward and Nigel will be at the other end of the corridor having them taken then walked over and put in me. I don’t know why, but that just seems to make it a bit more … err I don’t know what the word is really …. odd, maybe. I never really thought of cells coming out of him and into me, it’s always been just a bag that has been defrosted of stuff and then infused. This makes it more like cooking a meal and eating it while it’s still warm!

He did threaten to get drunk the night before, just to see if it has any effect on me at all!

We both had lots of blood taken today and labelled up and sent off for lots the preliminary tests that need to be done. My bloods were taken second by the nurse using my hickman line, so I never felt a think.

Nigel and I both have a strange sense of humour, so us both in the same room at the same time may have been a bit much for Edwina the transplant coordinator.  We joked about Edwina taking the blood from Nigel and she ended up apologising for causing him bruising in his arm after promising not too. We did say we would take some pictures and put them on here. (Nigel when you read this take a couple on your phone and send them over, then we can keep to our promise) although we day say we might edit them in photoshop to make it look worse than it was Winking smile 

At least the ball is rolling now and the day is getting closer. Nigel has to meet up with another person on the 23 to go through what happens, the risks etc to make sure he is ok to go ahead.

On the 16 I’m just having the ECG etc done to make sure I’m ok to before starting the transplant.

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Sunday, 4 September 2011

Steven and Angel

My son Steven and his partner Angel came to visit yesterday. It was good to see them as I hadn’t seen them since Amy’s wedding.

We had a catch up on what has been happening in both our lives and had a go on the computer with Flight Sim X and ATC VatSim which is something that we are both getting into at the moment, trying to have a go at flying.

I doubt it is something that I will actually ever get to do and to be honest probably safer on the computer than in real life the way we land! The Air Traffic Control (ATC) looks interesting if you like that type of thing, which I do. Yet again though there is a lot to learn as Vatsim is a true simulation of what they do and say in the real Towers etc.

We had fun though and I probably wont see him again until after my transplant.

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Dexamethasone at night

Well I’ve been taking the Dex at night time to see if it makes me feel any better. I do seem to be getting more sleep at night, wake up only once so far at 2 or 3am and then manage to get back to sleep until 6am, thats if I go to bet at 11:30pm or 12am. Yes that is good for me.

When I get up though and throughout the day I just feel totally drained. Today so since getting up at 6ish I haven’t really done anything, made my breakfast and a couple of cups of coffee and watch TV with a quick game on the XBox that I was rubbish at (even more than normal on Call of Duty) so turned that off after about 10mins and being last on the two games I played.

So will I stay on the Dex at night, well if I do get another prescription before my transplant, I will probably take it in the morning, as I would rather have the energy and enthusiasm for doing something during the day, at the moment I don’t feel inclined to do much, not even to write on my blog, but I’m forcing myself, otherwise I will just end up going and lying on the bed for a few hours.

I still have loads of pictures to edit and catch up on and a some video editing of PIlars wedding that needs to be done. I’ve tried doing some, but just can’t concentrate enough to get the look I want and end up giving up.

I’ve so much I want to learn and do, I hope that I get a chance to do things that I need to do before going into hospital, I’m not sure how long it will be afterwards before I can get back to normal.

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Saturday, 3 September 2011

Why I need to be more like a dog


It makes a good read and a lesson we all could learn from, not matter our religion (or even if you don’t have one).

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Friday, 2 September 2011

Subcutaneous Velcade

United Kingdom

According to Dr. Faith Davies from the Institute of Cancer Research and the Royal Marsden Hospital in London, both subcutaneous as well as weekly Velcade are being used in the U.K.

“Following the publication of the subcutaneous data, hospitals are putting the new route of administration through their hospital Drugs and Therapeutics Committees to get approval to switch delivery method,” said Dr. Davies.  She indicated, however, that some hospitals may require official approval of the subcutaneous route of administration before it can be used.

“From a patient’s perspective, [subcutaneous administration] will hopefully make delivery a more pleasant experience (no need for intravenous access, no need for hydration, quicker delivery, and fewer side effects),” she added.  “Importantly, hopefully the neuropathy side effects will be decreased, enabling patients to tolerate the drug longer and thus benefit from better and longer remissions.”

Read the full Myeloma Beacon article - 

If I go back onto the Velcade next week I will ask about this.

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Thursday, 1 September 2011

And now for something completely different–Sesamin

Have you heard of Sessamin, no, neither had I until I was doing research into alternative therapies into myeloma and other cancer related therapies.

Let me first tell you about ‘Oil Pulling’, ok initially it does sound like something sexual, or is that just me, anyway … Oil pulling is basically the process of taking a tablespoon of Oil in your mouth and swilling it around and forcing it between your teeth for 20 minutes and then spitting it out. Between 15 and 20 minutes it turns white which is what you are aiming to do. There are various oils you can use, but one of the recommended is Sesame Oil.


 Dr. F. Karach, M.D., presented a paper before the All-Ukrainian Association. The meeting was attended by oncologists and bacteriologists belonging to the Academy of Science of the USSR. Dr. Karach explained an unusual simple healing process using cold-pressed oils. The healing process is accomplished by the human organism on its own. In this way it is possible to heal cells, tissue and all organs simultaneously; the body itself gets rid of toxic waste without disturbing the healthy microflora. Dr. Karach says human beings are living only half their life span. They could potentially live healthy to be 140 to 150 years old. Dr. Karach suggested using either sunflower or sesame oils, but you could also use coconut oil or olive oil - pick one to which you do not react.

The method In the morning before breakfast on an empty stomach you take one tablespoon of cold-pressed oil in the mouth but do not swallow it. Move oil slowly in the mouth as rinsing or swishing and Dr Karach puts it as ‘ sip, suck and pull through the teeth’ for fifteen to twenty minutes. This process makes oil thoroughly mixed with saliva. Swishing activates the enzymes and the enzymes draw toxins out of the blood. The oil must not be swallowed, for it has become toxic. As the process continues, the oil gets thinner and white. If the oil is still yellow, it has not been pulled long enough. It is then spit from the mouth into the toilet - the oral cavity must be thoroughly rinsed and mouth must be washed thoroughly. Just use normal tap water or hydrogen peroxide and good old fingers to clean. Clean the sink properly, because the spittle contains harmful bacteria and toxic bodily waste. If one were to see one drop of this liquid magnified 600 times under a microscope, one would see microbes in their first stage of development. It is important to understand that during the oil-pulling/swishing process one’s metabolism is intensified. This leads to improved health. One of the most striking results of this process is the fastening of loose teeth, the elimination of bleeding gums and the visible whitening of the teeth.

The oil pulling /swishing is done best before breakfast. To accelerate the healing process, it can be repeated three times a day, but always before meals on an empty stomach. For step by step instructions click on:

This led me to find out more about sesame in general and if you do a search on the internet, there are various sites that say it works, along with the usual ones that say it doesn’t – my thoughts on it are, why not give it a try, if it works and doesn’t have any harmful side effects great. If it does nothing, what have you lost, apart from 20 minutes a day. I usually do something else like take my shower have a shave, get dressed etc all while Oil Pulling. The time soon goes.

Anyway back to the research and a more interesting thing that I found was called Sesamin which is made from Sesame. Now here a discovered a medical research document where there has been genuine research with real benefits. Here is a link to the PDF so you can read it yourself.

Now I am definitely not a medical minded person, but after doing a bit of digging so that I can understand some of the terms the bit in the document that says …

Sesamin suppresses cell proliferation in various tumor
We examined whether sesamin can modulate the proliferation of various tumor cell types. As shown in Fig. 1B,
sesamin by itself suppressed the proliferation of human
leukemic cells (such as KBM-5 and K562) and multiple
myeloma cells (U266)

Sesamin potent iat ed TNF- induced apoptosis
We sought to determine whether sesamin affects TNF-induced apoptosis in human chronic myeloid leukemia KBM-5 cells. Using a Live/Dead assay, which measures intracellular esterase activity and assesses plasma membrane integrity, we found that sesamin increased the TNF-induced apoptosis from 9% to 65% in KBM-5 cells (Fig. 1C, top). To determine whether the effect is cell type specific, we also examined the effect of sesamin on TNF-induced apoptosis in human multiple myeloma U266 cells. Like KBM-5 cells, sesamin also increased the TNF-induced apoptosis from 10% to 47% in U266 cells (Fig. 1C, bottom).

click to enlarge.

I will leave the rest for you to examine and your own research and investigation, but generally it looks like it increases the effectiveness of treatment and even taken with out any treatment is beneficial without altering the DNA. I’ve given a copy to Dr Lee to read as he hadn’t hear of of either – I don’t know if he will investigate any further, but I hope he will.

I’ve bought some and wanted to know if it was safe to start taking it, it didn’t say I shouldn’t so I’m going to start taking it from tomorrow.

I couldn’t find any in town (not yet anyway) but you can buy it from Amazon here is the link -

I also bought the sesame oil on amazon, but I found that in a local health food shop a little cheaper as well. Don’t use the Toasted type sold in super markets.


I will let you know how I get on with both of these.

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No Velcade today

It was my appointment at the Countess of Chester Hospital today. I was scheduled to have another dose of Velcade, but before going onto the ward, I was told Dr Lee wanted to see me. We discussed the amount of Velcade that I have had and it is unusual for anyone to have over six cycles and I have had seven so far and if I was to continue, eight! So the benefits of having another dose  was talked about and actually we don’t know if it is doing any good or just giving me Neuropathy. So the plan of action over the next week is that I have had my bloods taken today and they we see at what level my paraprotein is at. If it has gone down or stayed the same (from 10/12) they will continue with the Velcade. If however it has gone up, it means the Velcade isn’t doing anything, so no point in taking anymore.

I will know the answer next week (Wednesday) and if I need more Velcade I will have it on the Thursday. I have been given some Dexamethasone to take in the meantime but as Dr Lee said, it doesn’t know if it will do anything as I am a unique case and he has no precedent to go by, but might be better than doing nothing.

So the question is what to do if the Velcade isn’t doing anything and my fear of it climbing while we wait for my transplant is true. The option that Dr Lee wants to go for is the Lanolidamide (Revlomid), he wanted to use this in the interim but his colleagues in Liverpool suggested otherwise. I think it was because of the cost, I’m with Dr Lee though and think that the cost shouldn’t be considered when it comes to a life extending decision.

If the paraprotein has gone up then I would expect them to put me on the Lanolidamide and I will be expressing my feelings in a polite way about it going up again and the last 6 months of pain and illness being a waste of time if we are just going to let it go back to the high level again while I wait for my transplant in these last few weeks. I ask myself if the people that make these decisions would come to the same conclusion if it was a member of their family they had to decided upon or themselves. Would they really put a family member who they loved onto a regime they new wasn’t the best and might not work, would they take the risk of the paraprotein increasing and thus increase the possibility of death due to rejection or the myeloma not being destroyed completed because it was too high. All because they need to save money. I would prefer the gamble with someone else's life than mine!

I have heard the arguments about the cost and someone has to make the tough decisions as to where the money is spent. a Cycle of Lanolidamide is enough to pay for a nurse for year etc. Maybe they shouldn’t provide any medical care for Myeloma patients, after all they are going to die anyway, think of the nurses they could pay for… where does the decision making stop becoming about accounting for money and is more about patient care, after all isn’t that what hospitals are for.!

 Hospital - a large building where people who are ill/sick or injured are given medical treatment and care

I don’t see the mention of financial cost in the dictionary definition of ‘Hospital’ maybe we should add an addendum that says – providing it is cost effective and beneficial to the accountants/boards who manage the hospital budgets. 

.. Rant over

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