Day 24 post transplant–Climbing the mountain called stairs

Yesterday was a good day for me especially when I had to go upstairs to the toilet. I know exciting isn’t it, but I actually managed to walk up the stairs relatively easy. I still held onto the banister, just in case, but I managed to get to the top. I didn’t have to take crawl on my hands and knees to get to the top, which I have done in the past. I didn’t have to take one step at a time, by that I mean put my left foot on the first step, then my right foot on the first step and carry on up the stairs in the same fashion. No, this was a proper walk up the stairs and getting to the top without being that much out of breath and without having to virtually pull myself up by the banister.

I felt as though I had really achieved something, I didn’t get a medal awarded to me or a cup though, which was a shame. It was enough to know that I had the energy to make it to the top.

Today though is a different story. I’m back to taking it slow up the stairs and being tired when I get to the top. It was good while the energy lasted and I hope to have more days like that. I know I’m going to have my good days and bad days. As time goes by I’m sure I will have more good than bad until I can eventually get to some kind of normality again and start to get out of the house etc. Who knows, I may even be able to run up the stairs one day!

Day 23 - catch up talking about day 21 & 22

I thought I should catch up on the last few days.

Thursday day 21 post transplant:

I went to the hospital for 11am via the taxi ambulance. It was just for a blood test to see how I was doing. I also wanted to find out about my sore eyes, the lung issue that Chester hospital had mentioned and what I call my Hobit it feet (my swollen feet). It turns out that my eyes stinging and feet problem are nothing to worry about, its quite common and due to my body being very tired. My feet get gradually worse during the day, but are OK once I have rested them overnight. They listened to my chest and also heard what the doctor heard in Chester. My right lung was taking in less air than my left. They couldn't hear any fluid, but with my feet swelling, there could be a possibility of it being the start of fluid up, so they sent me for an X-ray. The doctor examined the results and compared the X-ray with a previous chest X-ray. It turns out my right lung is slightly smaller than my right as it is being pushed up by my other internal organs. Apparently not that unusual! Certainly nothing to worry about which is good. I'm glad I checked on these things though as I think it is always best to make sure, rather than worry about them.

My next appointment is on Tuesday, so a few day off, which is another sign everything is going OK. I also have to have my pentamidine which I have every two weeks now, rather than monthly.

Friday day 22 post transplant:

I didn't do anything yesterday, I felt rather tired most of the day. My brother and sister in law went home early afternoon. Talking about that, my brother Nigel rang me in the evening, and asked when did my other brother Nick get married, as I said my brother and sister in law! I meant my brother in law and my sister in law, not my brother! They are still my brother and sister in law, and I'm pretty sure that is how you write it when reffering to them. It is charitos sister and her husband. Pilar (her sister) along with her husband Chris hence, my brother and sister in law. It doesn't seem right to refer to them as brother in law and sister in law; maybe I should to stop an confusion!

Today, day 23 post transplant:

It's only early morning, but I'm feeling relatively OK today. Not that I have done much as usual apart from, get up out of bed, have a shower, take tablets, eat breakfast and write on blog. I might wright more later, if anything exciting happens, who knows I might win the lottery!

Day 20 - Family

Today has been a day off from the hospital visits. I spent the morning doing nothing really; watched some TV and browsed on the internet.

After lunch I felt like I needed a sleep, so went to bed at about 2:30pm. I didn't wake up until gone 5pm.

My brother and sister in law arrived at about 7pm and so spent the evening talking to them. They are stopping a few days, but won't see much of them as I am off to Liverpool tomorrow.

I have a few things to ask/tell/discuss with the doctor. My eyes have been stinging and are a bit blood shot. The doctor at Chester examined me and told me that my right lung wasn't working as well as the left; although she couldn't hear any bubling or sign of infection, it needed to be kept an eye on. Now just before going to bed after struggling up the stairs, I got undressed for bed and noticed that my feet and legs are swollen. At least I will have something to talk about with the doctor!

Day 19 – Blood

There isn’t that much to say today, I’ve spent all day at Chester Hospital receiving two units of blood.

I feel much better after receiving it, more energy than I had before.

One thing that did become clear is that Liverpool and Chester need to calibrate how they measure the bloods. I had a different HB count in the afternoon than I did in the morning yesterday. The other blood counts were different as well. Chester reports them higher than Liverpool.

I was going to ask them about this when they last took an Igs count, which measure my paraprotein it was different than the one I got at Liverpool. My paraprotein levels are lower at Liverpool. As I said to Dr Salim, I’m better off going to Liverpool as my levers are lower and therefore have a better chance of the STC working! Really this shouldn’t happen and I’m sure that both Hospitals will say that they have the correct results, but the both can’t be right. I’m not sure how often the equipment is calibrated, but for someone like me, the different between a paraprotein level of 15 and 22 is a big jump. I can’t remember the exact figure, but it was something like that!

It was good to chat the staff at Chester and to meet the new nurse Caroline. I always have  laugh with the staff and I’m sure some of them are as mad as me. They have a good sense of humour.

I don’t know when I will be back there again, it will depend on how often I need to have blood or platelets etc.

Day 17 & 18 More Hospitals and wonderful friends.

Yesterday the 23 October was my Day 17 post  transplant. I was feeling much better after the fiasco of being sick and dehydrated. The IV fluids made me much better and I had been eating and drinking OK, but still need to drink more. I found that I can drink fruits of the forest cordial as almost everything else makes me feel a bit sick.

My sister Carol and her husband Mike came all the way up to Chester from Southampton and stopped off at our house for a few hours before going on for short breaks in various hotels.

It was lovely to see them and to catch up as we don’t get that much of chance to see each other, being so far apart. They didn’t stay too long, as they realised I was getting very tired and needed my rest, which I was grateful for.

Today (Monday) I had an appointment at Liverpool at 10am again and the Taxi/Ambulance turned up perfectly on time. The driver was a lovely guy and full of stories from his life and experiences. To be honest I could have spent ages just chatting to him. The only thing I was worried about the the cleanliness of his car, although he said he cleaned it regularly, I’m not sure how regular it was! Once a year is regular isn’t it!!! We had the same driver take us home and Charito fell asleep as usual, whichever vehicle she is in, she falls asleep, I can’t blame her, she does so much I’m not surprised she takes every opportunity to catch up on her sleep. Not quite sure how she managed to sleep through the drivers anecdotes, of which there were many, but she did.

Whilst at the Liverpool hospital, they took my blood and said I could go home, which I was surprised about, but they said they would call me if I need anything done and could come back in. I don’t think they realised how far away we lived and it wasn’t just a 10 drive in. As my bloods were relatively low on the last count, 8.1, I said I would rather wait and see if I needed any blood. Thinking that they would get the result and if I needed any blood, give it me while I was there, yet again though, I was wrong. My blood results showed that my HB level had dropped to 7.1 and I would need a transfusion. However they said I could come back tomorrow as they would need to do a cross-match and arrange the bloods. So even though I waited, they weren’t going to do the transfusion on the day anyway? Wish they told me that before I waited though.

Anyway with me needing blood and having to come back in, I asked if I could have that done in Chester as it is nearer to me, only 10 or 15 minutes away from were I live. So they said that shouldn’t be a problem and they would give them a call to see if they could arrange it. She went away and came back about 10 minutes later to let me know that would be OK and it’s been arranged for first thing on Tuesday morning.

I asked about my next appointment at Liverpool and that’s been arranged for Thursday at 11am. So I have tomorrow off I thought.

We got home safely and Charito woke up just before we got home, not quite sure how she does that, but she always manages to wake up just before she is supposed to, even when on a bus or train!

Not long after having something to eat, I got a phone call from Chester Hospital, it was one of the my regular nurses and it was good to hear from her. She was confirming the Tuesdays appointment and also wanted to know if I could go in today, so that they could take some bloods and do a complete blood test and match ready for my bloods. They have to treat me as a new patient now that I have a complete new blood system ( a working one hopefully). If I didn’t have it done today I would have been at the hospital for a very long time tomorrow.

So all I had to think about now, was how do I get there? I couldn’t arrange an ambulance at such short notice, I definitely couldn’t drive myself and Amy my daughter is on holiday this week. So I turned to my adopted family and close friends who live next door, Chris and Jodie. I wasn’t sure if they were in or not as their car wasn’t in the drive, but Chris was in but Jodie was out. I asked Chris if he could give me a lift to the hospital and without hesitation he said yes. They have always told me to give them a call if I need to, but I don’t like relying on people even though I know they don’t mind. Not only did Chris give me a lift to the hospital, he insisted that I give him a call when I finished and he would come and pick me up. Sometimes friends are better than family, but I wont go into that (I will write about that in my book, My Life with Myeloma the true story).

I can’t wait to win the lottery so I can thank Chris and Jodie for everything have done and do for me. They both mean the world to me and Charito and I hope they know how much we love them both.

Tomorrow I’m off to Chester, probably all day for two units of blood and then Thursday back at Liverpool. I must remember to book the Ambulance/Taxi for Thursday.

Day 15 and 16 - Hospital and home

Sorry for not posting anything yesterday, but I wasn't very well. After being sick most of Thursday and throughout night, I couldn't drink anything and I was very dehydrated. My first appointment at Liverpool was at 10am and the taxi ambulance picked me up at 9am to take me to the hospital. I was very exhausted and use a wheel chair once I got to the hospital to get up to the day ward. Once I was there and they asked how I was and I told them about the sickness andthatI would need some IV fluids if they could give me some. Normally You have to wait for the blood results to come back before they give you anything, but as It was clear I was dehydrated and Ben sick, they put some fluids on a drip for me over four hours.

They took the usual bloods and I had to wait about an hour for the results to come back, as expected they showed my eurea levels were low and I needed to drink more! Apart from that my levels were good

HB 8.1
PL 90
WBC 12.1
Neuts 9.3

As you can see my neutsaresky high. After the doctors had reviewed my bloods, I was told not to take the ciclosporin until Monday as my levels were too high again. To me that was good news as they are horrible to take!

After feeling a bit better after the fluids, I arrived home and received a phone call from the doctor telling me that they had reviewed my bloods from an earlier test and my ciclosporin levels were OK and should take them as normal. So my elation about not taking them didn't last long.

The night went relatively OK without sickness, it helped after they gave me the fluids they also gave me some IV anti sickness. The nurse recommended I take the anti sickness tablet on its own first about half an hour before taking the others and that seemed to help.

Today has been a good day and I have managed to eat and drink and feel much stronger. Hopefully I will get a good nights rest and feel even better tomorrow.

My Sister and brother in law are coming to visit tomorrow so I have something to look forward to as I haven't seen them for ages.

Day 14 - First night at home

I don't know if it was because I was more relaxed at home or some other reason, but I wasn't well last night. After coming home and settling down after charitio made me something to eat, I caught up on a bit of TV.

After I sorted all of my tablets out for the night and went to bed. The one thing I didn't do was take the anti sickness ones. The reason being is that I wasn't on the anti sickness pump yesterday at at all and I didn't feel sick, so thought I could get away with out them, I was wrong!

I was sick two or three times in the night and haven't felt well most of today. Spent the morning on the sofa and went to get a drink and immediately was sick. I've taken the anti sickness today but obviously it isn't as good as a pump as I was sick. My temperature has been fine, so just need to get over this sickness and I will be OK.

I just had to have a break from writing this, to be sick again! Thank goodness for plastic bowls.

Apart from the sickness I'm doing ok. The pain in my back and ribs was quite bad this morning after the rough night though. I did discover though that if charitio rubbed my back it made it feel much better which enabled me to go down stairs to take my tablets.

I haven't eaten anything so far today and not sure I will while I keep being sick, but will try and drink some more. The problem is at the moment it just keeps coming back up, I will just take it easy and slow.

Day 13 - Tablets to take home

I just had to take a picture of these. My tablets to take home with me.

Mmmm yummy!

Day 13 post transplant – Home

Well I can’t believe how well I have done got through this transplant without any issues (yet). I’m going home today at about 3 or 4pm, I have to wait for  Amy my daughter and Charito to finish work before they can pick me up.

This morning I woke up with the pain in my back again, which is hardly surprising the way my bloods are working overtime at the moment, so that was expected.

I have my Cyclosporin reduced again to 275 as my levels were too high, another good sign thing are working properly. I had my shower before having my bloods taken today, I will wait to see what they bring back today. I’ve also had my Pentamidine which I have to go into a room on my own for as it is yucky stuff for anyone else to breathe in. I knew I was having all of this done this morning, so I wanted to get up early and get showered so I had everything sorted. I even had another good breakfast ready for me once I had finished my Pentamidine.

The staff here have all been wonderful as usual and I can’t thank them enough, I know I haven’t been one of these patients that keeps pestering them (I think!), but they have always made sure that they apologise if they couldn’t get to me straight away after buzzing etc. I know they have had some very ill people in and not everyone is going through the transplant process as well as I have, some people get all of the symptoms, such as sickness, mouth sore etc and I didn’t mind waiting while they sorted out the more sick patients.

It was funny this morning when I buzzed at 7:30ish for some pain killers. I was one if not the first to start the buzzing off this morning (once one starts everybody buzzes as usual). I said about being the first and the nurse asked if I had a good nights sleep, which in all fairness I did, apart from waking up a few times in pain with my back. We didn’t have the buzzing all night from the usual culprits, I know that one of the nurses was going to mention it to this particular patient about showing some respect for others and trying not to buzz throughout the night and keeping everyone awake. There had been a few people complain, including myself about not being able to sleep because of the constant buzzing going off. I have no idea who it was or which room they are in as confidentiality is very important here and they really do stick to it. So even if I knew every patient from the day ward, I would know if they were on this ward with me. I have told them though that I don’t mind people knowing or contacting me and to feel free if they wanted to let them know about my blog. If it provides some help in any way to someone else, then it has been worth writing all of this that I do. Back to the story, this morning when the nurse brought in my pain killers I asked for at 7:30 I mentioned again about my Pentamidine and I was going to have it yesterday, but then arranged it for this morning and wanted to make sure that the morning staff knew I was going to have it, so it wasn’t delayed and possible stop me going home this afternoon. I just had in mind exactly what I wanted to do today.   Alarm went off at 7, take pain killers, wait for them to kick in, have shower, take breakfast then Pentamidine, all sorted. I said this too the nurse and she said and manage the nurses schedule, or something similar. …. I really wasn’t trying to organise them, but I know how easy things get lost in the mix, so if did seem as though I was trying to organise them as well, I am sorry. I must be feeling OK to jump back into my managers head and go through check lists in my brain etc. Am I the only one that does this and write to do etc or am I really that strange… rhetorical question and doesn’t really need an answer before I get lots of ‘Yes’s’ in my comment box ;-)

One other thing I must comment on as well that I have mentioned and even complained about in the past. The cupboard room that they normally put people, you know the one I’ve mentioned that had the old TV’s  and Christmas decoration as well as a couple of bed for chairs for patients. Well I’m glad to say that has had some improvement and is looking more like a waiting/medical room now. It has some new chairs and all of the old stuff that was stored their has been removed. I was talking to the ward sister and have been told there are more changes going on with more storage space available to them.So I’m glad to see things moving along and getting better for the patients. It does make a difference knowing that we are in a nice clean proper place and not just stuck in a room that feels like a cupboard and pushed out of the way until required. It was almost a pleasure to have my Pentamidine in their today, in one of the relaxing chairs listening to music as I breathed Pentamidine in.

So now all I’m waiting for is my dressing to be changed on my line, my blood results to come back OK which I’m pretty sure they will and then to get picked up.

I will sort out all of my things soon as well, although that wont take long and I really need to the suitcase to do it properly so I might just wait.I will see how I feel after.

My next blog message should be from home where I will have a proper internet connection – Hooray – I’ve had nothing but problems with it here, having to disconnect and reconnect through tethering and wireless etc. How did we manager without the internet before!

See you at home x 

Day 12 Blood Count

They took my bloods today, just in case I needed to have a cross match tomorrow; however the blood results have come back and they are even better than I had thought they would be.

HB: 10.2 up 1.0
PL: 39 up 15
WH: 12.0 up 4.2
Neuts: 7.6 up 3.2

I really can’t believe my Neutrophils they are better than they have been for a very long time. When I came in, they were at 0.7, now 7,6 WOW The normal (Normal as in doesn’t have cancer) is 7.5, I am better than most people at the moment! I think that deserves a double WOW WOW. I’m under no delusion though that they will no doubt drop again. The are in the position they are due to the GCSF and the reason why my back has been hurting. I’m sure they will drop right down again pretty soon; however for now I’m happy they are up to a level where I can go home without needing any bloods etc.

Day 12 Post Transplant

Well just had all of my connections taken off, no longer tethered to my anti-sickness and the octopus has been taken off, no not a real octopus, the little device that splits the line so they can add more things to  it like saline and and anti-sickness and of course if they need to add more, they just put another splitter on and hence it ends up looking like an Octopus. The red line they keep on it’s own for taking bloods. So now I just have the basic line set up with the two connections if I need them usually one for blood and one for other things lings like saline, but they can use it for other things as well as blood and platelets if need be.

I didn’t get much sleep last night, but I know others didn’t as well as the buzzer kept going off throughout the night, particularly one patient I think. I’m the type of person that if I get woken up I find it really difficult to go back to sleep again, so I was reading blogs and the news off and on throughout the night to try and wear myself out to the point of falling asleep, needless to say it didn’t really work, so I will probably be knackered throughout the day to day. I just hope it doesn’t happen again, not for my sake, but I am allowed out of my room now and I’m sure I can’t find a big stick from somewhere …. (Message for the Nurses here reading this at the Royal, I wouldn’t really do that …. it would just be a slight slap honest ;-) )

Talking about the nurses reading my blog, I found out today that most of them are reading it now, so Hi everyone. It was mentioned that they are going to point other patients to it as they think it would be useful, particularly the list of things to bring in with you that I wrote about on my first transplant. A patients guide to an Autologous Stem Cell Transplant to be honest I wouldn’t put anything different in it for this type of transplant. I would like to hear from anyone else who has gone through them and would like to add to the list.

I wondered why my medication was coming a bit more regular and I didn’t need to to really mention anything to the nurses, it’s because they have read the blog! Oh the power of the written word.

I was also talking to a couple of nurses about my photography, the conversation started off by asking what I did before I left work, as most of them know here that I now do photography, but were surprised to hear that I was an Ecommerce manager and been working in IT for over 26 years. It helped them to understand why I knew so much about technology etc. After explaining that the photography was only really taken up once I was diagnosed with cancer. I knew at some point I would have to give up work and wanted to do something that I could do during my treatment. I’ve always been one to study and do research and though the photography would be an ideal thing that I could work around during my treatment. The plan was that after my first transplant I would start the business properly to make a few pounds to keep me going until I pop my clogs. As it turned out I needed to have this transplant which involved intensive treatment and very regular visits to the hospital almost on a daily basis, so couldn’t start the business as I wanted too. Everything is set up though for me to do so as soon as I can after this transplant, so if you fancy some new photos and help support me financially once I can get then let me know. If you register your interest now, I will give you a discount. My web site for the photography is easy to find, although as usual it hasn’t got the latest pics on there, yet, but that is something I will be doing while recuperating at home is: www.seantiernan.co.uk see I told you it was easy. I will be doing mainly portraiture or commission work, such as flowers of your chosen colour or type that will be suitable for your home decor. Unique photos just for you. I’m putting together a package as most photographers do of one large A4  and four 6.x4 for a standard price or you can upgrade to a quality Gallery Framed Print, which look really lovely in any environment.

Anyway, sales speech over with if you just want to look at my general pics I have a flickr account you can browse view which contain all sorts of pics, some I have printed off as gifts for friends and nurses, so don’t be afraid to leave comments, you never know I might be feeling generous and give you one as a gift :-) http://www.flickr.com/photos/seantiernan/ 

I had a lovely cooked English breakfast this morning and will probably have the same tomorrow … yummy, I’ve put on weight since I’ve been here, when I really thought I was going to lose my appetite like last time and lose it. I was told though that I still might not feel like eating at home, which is what happened last time and not worry about it. I was also advised to each chocolate and high in calorie foods, so I still have a good excuse at the moment.

Back to medical things, I’ve made sure that I have arranged to have all of my bloods and platelets checked ready for tomorrow, blood matches done today, so I don’t have to wait for them to come back tomorrow before ordering them, which may end up with me having to stay another night, which I want to avoid or coming back in again on the Thursday which would also be inconvenient. I’m having my Pentamidine today as well to get that out of the way, moved to separate room because of the usual yuckyness (is that a word!)

So everything is ready for me to go home, although after me surprising Charito at the entrance and telling her that I would be home on Wednesday, she did her usual panicking of I haven’t cleaned the house! I know that having the environment clean is important, but Charito insisted on getting up at 5:30am today to clean the house prior to going to work! I just don’t know how she does it .. I love her to bits for everything she does for me and putting up with my horrible mood swings, that I continue to blame on any little bit of steroid that I have in my body, but as I know and she keeps reminding me, I was like that before I even got cancer!! – She doesn’t read the blog anymore as she says it makes her sad at time, and I know others that have blogs where there partner doesn’t read their blogs either, so it isn’t unusual, so if you read this this and know Charito in person, please let her know that I am telling others how much I love her and appreciate her help. Sometimes I think she isn’t aware of home much I care for her and know how hard she works, even if I do get frustrated at her working three jobs when I know she used to manage one of the top restaurants in Peru and should stop using her language as an excuse for not getting a better job, she speaks better English that half the people I know, including my own grown up children!

Anyway what was going to be a short blog message has turned out to be another long one again, I don’t have any Dexamethasone in me now as an excuse.

Today’s blood counts

These are my latest blood counts:

HB: 9.2
PL: 24
WBC: 7.8
Neuts: 4.4

As can be seen my HB and PL are dropping, but that is to be expected, I may need blood and platelets soon, but the good news is that my White Blood Cells up and and amazingly my Neutrophiles are up to 4.4. which is higher than the have been for ages and no wonder my back has been hurting today, my bone marrow must be working overtime :-)

Day 11 post transplant – Some really good news

I’ve had a visit from my Doctor and his team this morning and I’m doing really well, when he asked me how I was feeling, I jokingly said I was going for a jog and he thought I might be telling the truth as I am doing so well, I wasn’t off course. This morning I woke up with a bit of pain in my back, but that is probably caused by the GCSF.

The good news is that I can now go out of my room for a wander around the hospital and stretch my legs and even go down to the canteen for a drink if I want. I’m going to take up one of the nurses suggestions here and surprise Charito later on when she arrives at the hospital, she wont be expecting me to meet her at the entrance as she hasn’t been told yet.

The other REALLY GOOD NEWS – If everything goes well, which there is no reason why not, I will be going home on Wednesday :) :)

I couldn’t have hoped for it to go any better. I will have to return to the hospital for monitoring every other day for the first couple of weeks, then drop off to twice a week. If I need just bloods or platelets they are going to try and arrange for me to attend Chester, rather than come all the way over to Liverpool. The sooner I get back to Chester the better for me as it is much closer. At the initial stages though I’m happier to come here as they aren’t used to monitor patients after the this type of transplant and they know my case better here with my Cyclosporine levels etc.

I’m having my anti-sickness pump removed tomorrow and today having it without any Dex in it, just to make sure I’m ok without and Dex and not sick, but I don’t think I will be ill as I haven’t been for a number of days yet.

I’m looking forward to going home Wednesday a really big YIPPEEE!

Thanks to everyone who has prayed and sent their love and Reiki support, I really appreciate all your thoughts x x x

Occupy Wall Street Protesters – Arrested for Closing Citybank accounts

I’ve just managed to catch up with what has been going on with the #OccupyWallStreet demonstrations. I’ve only watched one video and the first one I watched was just after about thirty people have been arrested for closing their accounts. A group of people cued up to close their accounts and were asked to leave the Citybank after walking out of the door they were approached by under-cover police and against their will arrested, even after they explained they were customers of the bank and wanting to close their account.

Occupy the world has been going on throughout the day with demonstrations all over the world including the UK at the stock exchange. You may have seen a brief news update on BBC, but as usual they are playing it down and even only said about a few demonstrators at Wall Street when in fact their are thousands! At least they are mentioning it, even if it isn’t full the truth.

If you get a chance, watch the videos at http://www.livestream.com/globalrevolution and see for yourself, then ask the BBC and other news agencies why they aren’t reporting it correctly.

View the world map of the demonstrations at: 

Also if you get the opportunity to watch one of the videos how they communicate with each other as mics are not permitted, they should Mic Check and then everyone repeats what has been said, so the rest of the thousands can hear what they have to say. A great idea.

Global revolution are setting up a temp news room where they are bringing live feed from all over the world, include the UK to let people know what is really going on. All this is non violent and over the last month since it was started and I’ve been watching the live feeds, none of the demonstrators have been violent in any way, they have made it more of a festival with music and singing. On the other other hand the police have been violent, spraying innocent people with chemical weapons (pepper spray) and dragging them across the road with hands bound behind their backs as their wrists bleed, behind led into the roads by the police and then cornered off and arrested for being their after being led their by the police. Police chiefs spraying the innocent with pepper spray as protesters walk innocently in front of them on the pavement.

If you weren’t aware that this was in the US and it was a news report of innocent people being attached by the local authorities, you would think it was Libya or Egypt it would be all over our news media. Why isn’t the US and UK letting people know what is really going on, how long will they continue with this misinformation – is the UK and US just as bad as Gaddafi, we have to ask ourselves the question, Why?

Day 9 post transplant

Well I’m doing really well, the doctor came around earlier and said that he isn’t going to change anything at the moment, my bloods are rising which is what we want after the dip.

The platelets in Orange they are not too concerned about dropping or my Bloods in red on graph. They can always give me a transfusion of blood or platelets if they drop too low. I will be having appointments every other day at Liverpool once I go home. Also if I need to have any more GCSF injections, I will be taking some home with me and they will give me a call at home to tell me to inject myself the night before.

I’m trying to drink a lot more which seems to be going OK using a larger glass helps. If I am only taking a few tablets, I am making sure that I drink a full glass of water with it as well. They wont let me out of the hospital until I don’t need to be on any drips of any kind. The only one I have been on regularly is the saline to get some fluids into me, so I’m being a lot stricter with myself to make sure that my input and output of fluids is going well.

So like my little graphs above, I’m full of mainly smiley faces :-)

Day 8 Morning

It’s day 8 of my new stem cells from Nigel and I’m not sure if it is the dex the have added to my anti sickness pump of Ondansetron or something to do with the Granulocyt  colony-stimulating factor (GCSF for short). More likely to be the dex though that is making me a bit more lively than normal. Yesterday I felt really good and even had a vegetable curry for dinner which everyone was surprised about and very nice it was. I was still awake at 1am watching TV and on the internet and then went to bed about 1:30 and up at 5:30. So far after being to the loo and peeing more than double my usual amount I’ve cleaned all my room where I think could be at risk with Sani-Cloths. That includes my computer keyboard that I touch all of the outside of the computer any cables that go into it etc. As well as my glasses Tv controller, ipod and headphones, books, tablet, door handles, fridge top and handles, bed riser control and anywhere else I’ve seen someone else or myself touch that could cross contaminate me. Now is the time at the highest risk, so it is better to be safe and keep everywhere clean.

Charito and I are following the same rules as we did last time where we have no physical contact when she comes into visit, so no hugging or hand holding. Again it might seem a little overboard, but it worked last time and seems to be working this time as I haven’t as yet caught anything nasty. I know of other people in other rooms that have lots of visitor and even children visiting, I can only imagine that they haven’t read up enough on the risks and I have seen these type of people have a couple of cardiac arrest when going through the same procedure as me, so if it is the cleanliness that has helped then Charito and I don’t mind not having a hug for a month if it keeps me out of having to go through all of those nasty side effects.

If it is the dex that is keeping awake etc, which I think it is, then I like it, I would rather be like this than really tired all of the time. I will probably collapse and fall asleep later on for a couple of hours to recover during the day; that’s what usually happens when at home on the dex.

I will get my daily shower once I can get hold of some clean towels, I was going to have one before writing this, but thought I would give the nurses a longer rest rather than buzzing at about 6:45. It’s now 7:20am so will buzz someone to get them.

I will try and do a panorama picture of my room late for you and blog it for you so you can all see how big or small my room is.

Quick blog message – Pain and do they really understand

I’ve just had a conversation with one of the nurses and I was just explaining to her that me: I hadn’t had my 2pm pain killers which I was due, (this was at 2:35), nurse:  I was told that they were due at the hand over that they were due at 2pm. me: (told but did she know I hadn’t had them at 2pm) but I haven’t had them yet nurse: I’m going to get them for you now.

I got them at 3pm an hour after I was due. Sometimes I don’t think they realise how much us patients rely upon the pain killers. For me and I’m sure other patients, they start to wear-off in about the last hour, so the pain gradually increases. For me the main part is in my feet with the Neuropathy, if left it just gets worse by the hour. The shingle pain is still there and unfortunately that’s the same, the longer you leave it without the pain killers the worse it feels. So although it might only seem 40 minutes or an hour later than they time it was due, the consequence for the patient can be very painful and I don’t think at times the really understand the situation that we are in and how much we really really upon them.

I did feel like screaming at her and shouting. DON’T YOU UNDERSTAND … I NEED THEM NOW, NOT IN AN HOURS TIME! but the good work that they do and I know they are very busy on the ward stop me doing that. Besides it just isn’t in my nature …… errr ok sometimes it is, but it just wouldn’t be appropriate here.

Thank goodness for my blog where I can have a rant and vent my anger!

Day 6 and Day 7 – up up and away

Day 6

Yesterday Day 6 I didn’t feel very well and I was sick about three times during the day, not enormously though it just seemed that if I was settled on one position and suddenly moved to another I got a sudden urge to throw up. It was normally when I was leaning forward to take tablets or about to eat my lunch or dinner. I was very tired throughout the day and spent most of it nodding off.

They put me on some fluids again overnight, just some saline, which is a bit of pain, not literally just annoying as I can’t really sleep when the baxter is on on buzzing away next to my ear with occasional clicking and squeaking that that it does. I think I managed to nod off a couple of times though in between going to the toilet for wee at around 3am.

Day 7

Every morning when I wake up (I was going to burst into song then … ) I wonder if today is going to be the day I end up with the very sore throat and they are going to suggest tubes down my throat to feed be by. Fortunately today is another without a sore throat, or at least it is so far. The doctors have been in to see me this morning and they told me my Para protein levels from the igs bloods they took the other day. I was at 15 which is compared to the last one at Chester 25 is lower; the reason for this is that it was done by a different medical centre. which thinking about it, I thought they sent them over to Liverpool to get processed, so I’m not sure about that. Dr Salim said that there is a process in place to calibrate the various testing centre’s so that they are are all the same, and I jokingly said I should come to Liverpool on a more regular basis as it shows I am better off. It’s only by a few points though and we really don’t know how much it had dropped or adjusted since having it done at Chester, so I’m not too concerned about the different. The main thing is, is that is isn’t showing a rise in my paraprotein. That would have been more of a worry.

My Neutrophils are now at 0.2 and as they are almost zero they are going to start me on the GCSF, which is the growth factor injections into my stomach to start off my own bone marrow to fight back and start to work it’s way up again. I have always considered this the turning point of the transplant process and I am now on the way to getting better and starting the weeks on getting out of hospital and going home. I may still be here for another couple of weeks yet until I stabilise enough to go home, but in my mind I’m on my way up and that’s the positive attitude that I am keeping.

I’m sure it will pass quickly as I’m finding that all of the things I have brought in to keep me occupied, I’m not getting the time to do with one thing and another. I have my kindle with me with a couple of books loaded that I haven’t even looked at yet and a new real (yes it had pages made of paper and you have to physically turn the page, do you remember those things called real books, back in the old days?) book, that I only started reading prior to coming in about Reiki I’ve downloaded an electronic book of Reiki symbols onto my kindle as well. Music on my iPod I’ve only listened to a few times. I bought a Dave Brubeck CD just before coming in and only got to play the first 8 out 27 tracks on the Take 5 album, they don’t make music like that anymore! Every time I start to listen to it, a nurse will come in or someone else to interrupt it. I’m looking forward to the day when I can sit at home with some cheese and wine and this album playing to totally chill out.

Nigel's Stem Cell Extraction

Nigel managed to get a few pictures of when he was having his Stem Cells Extracted last Thursday, so I thought I would post them here for you all to see. There is some video as well, but I can’t do that from the hospital, so you will have to wait until I get home to put that together.

Above: The needle that they insert into your arm, not all of it of course, from the green bit to the end, but still a large needle and it is quite thick to allow the a large amount of blood to throw through it.

Above: This is the machine that you get hooked up to. The blood comes out of one arm, passes through the machine and then then blood minus the t-Cells return back into the other arm. One of the arms has to be kept still for several hours during the process.

Above: This is the centrifugal ring that the blood passes through as it spins at a high speed in the machine the blood products are seperated.

Above: Here you can see a close up of the various products extracted, I couldn’t tell you which each of them were, but I think there is at least platelets and t-cells.

Above: These are the t-cells going into me after they have bee extracted from Nigel

Above: This is me receiving them, but I don’t remember them going in, I was really quite ill and wasn’t aware of what was going on. It wasn’t the t-cells that did this, it was the fact that I had my new Hickman line fitted with a sedative and been to have my radio therapy over at Clatterbridge all a bit too much in one day, at least it was for me.

Day Five

I managed to get some sleep again last night, but still very tired. When I woke up and sat up, I felt really sick. I got to the point of sitting on the the side of the bed with the cardboard bowl in front of me, but again managed to hold it off. It settled down after about ten minutes and I still managed to force some breakfast down.  I'm trying to make sure I eat as normal as possible while I can to keep my body working as normal as it should. To be honest though its a bit screwed up at the moment I'm still not urinating properly or opening my bowels properly. I've just taken some more movicol but I know what will happen,once I start I just won't be able to stop going and it will be days of diarhia probably!

I've seen the doctor this morning and she is giving me some water tablets as we still don know where it is going. My theory is though that once I start going to the toilet properly my water works will be OK. With the amount of food I'm eating it must be making my stomach swell and pressing on my bladder. I'm sure that doesn't help. They have stopped my cyclosporin for last night and this morning as my levels are sky high, which they think could be the cause of the water retention and the headaches. Time will tell.

Just had the nutritionist in to see me and go through the usual things about eating and the availability of milk shake suppliments. I quite like the banana and the vanilla shakes, not too keen on the strawberry ones. She mentioned that it is common for people to be fed via a tube normally on about day seven when the throat gets rather sore ... surely sticking tubes down your throat when it is sore can't help, but hey who am I to complain... I also asked her about the Sesamin tablets and if she had heard of them. She hadn't so I'm going to dig out the link or her to have a read of.

So being on day five, day zero being the day of transplant, I think I am doing really well, I keep expecting lots of horrible things to happen as I have read about it and spoken to others. I'm hoping though that I can get away with a lot of them as I did last time, I managed to avoid all the nasty ones.

Nigel has sent me some pictures of his extraction, so I will do a post about that shortly.
The picture is of one of the giant cyclosporin tablets that I have been taking five of twice a day mmmmm yummmy

 

Day Four

I've  not been too bad today. Felt sick a few times but managed not to actually be sick which is a good thing.

I noticed after my shower this morning that  the back of my legs really hurts when drying them. I thinks this is due to the radio therapy I had, which can cause skin sensativit. My knuckles on my left hand are also red and sore.

My main issue at the moment is with the amount of urine I'm outputting. I have to keep a measure of how much I drink and how much I pee. I have to wee in a jug every time I go so that I can measure it. At the moment though I'm not weeing much! Which is a bit of concern. I'm trying to drink as much as I canbutwithmytastes changing it is quite difficult. I've gone off coffee and tea although I still try to drink a cup now and then. Water tastes yucky unless very cold. I'm drinking as many cartons of juice I can as well.

I'm on a drip of saline at the moment to get some fluids in me so I dont dehydrate but more importantly keep my liver and kidneys working. I just dontseem to be producing enough wee though. The doctors have checked me o'er to seeifI have swelling especially water retension in the ankles,but nothing. The gave me water tablets yesterday that worked and I peeing up to 600ml at the moment though at 20:46 from 6:00 I have only peed in total 400ml. My input so far is 1.220ltr + the drip that is going now. So the question is where is it going and why can't I wee? I going to try any again after this blog post.

In general though I'm doing OK but I think the next few days will be rough as my blood have started to drop.

             7th.        10th
HB.       11.6.       9.9
PL.        233.        151
WH.      3.3.         1.1
Nuts.    2.6.         0.7

Its a matter of waiting to see what happens.

Hickman Line Update - the good the bad and the ugly

Hickman fitted at Chester with Stoma Ring

I thought I would give you an update as to what happened with my Hickman Lines.

Prior to coming into the Royal I had a new line fitted in Chester, the reason being that last one I had for nearly 7 months I got an infection in, Which was a shame as it worked really well and I never had any problems with it, that was also fitted at Chester.

When I cam around after Chester fitted the line on the Wednesday prior to coming in I was surprised to see the way they had secured it. They used what is called a stoma ring, which is normally used for colostomy bag, stuck it to my chest and then secured the line to it with several sutures (stitches).

Chester did test it to make sure it was working, but struggled to get blood out. It certainly wasn't flowing as well as my last one.

The Stoma ring definitely secured it well, but it was difficult to clean the area around the line due to the plastic of the stoma in the center of the ring. They had cut a whole in it so that the line could be fed through, but it certainly wasn't enough to gain access for cleaning all the way around it.

When I arrived at Liverpool and they first looked at my line to make sure it was OK they were really surprised at what they had done as they had never seen anything like it before. The nurse redressed it, but couldn't clean it for the reasons above and she was concerned about infection if she couldn't gain access properly. She but another dressing over the top and referred it to another person to evaluate what to do. In the mean time they were using the line to insert fluids etc and even the chemo.  They did manage to get some blood out of it on the first day, but like Chester it was difficult.

When they came to take blood the following day, they couldn't get anything at all, no matter how hard they tried. Using all the usual methods of breathing and moving and arms waving etc. I've blogged about it before, but will cover it again here. I was referred to the Line Specialist who was again shocked at the way it was done, she did agree though that the line was very secure and for that purpose it worked well, but not for someone who was about to undergo a stem cell transplant and required access to the entry point of the chest for cleaning. It was so unusual for them to see the stoma set up that they called the hospital photographer to come over and take some pictures for them so they could use them in training purposes. I had to sign a document to say that they could use, which I didn't mind doing as I will always help where I can. Helen the line specialist removed the stoma ring and cleaned it up so that the nurses upstairs could gain access and clean it when necessary as well as make sure the line was still secure. To do this use used several steri-strips in a circular cross over fashion. The line was wrapped in a circle still in a similar way that Chester had done it. Sorry I don't have a picture of this, but if you can image the picture above, but without the all the plastic etc and then stuck down with steri-strips going all the way around it in X type fixing, you will be somewhere there!

As for the line not working, Helen had tried vigorously to get some blood out, but couldn't. Believe me she tried every way she could. When I left I was quite sore as she gave it a proper scrub and a clean. I was told that there were a couple of things that they could do. There was a fluid they put in the line and leave for a couple of hours to remove any blockage, that's if it was blocked or it was possible that the line was touching the side of the wall, so every time they tried to yield any blood it just sucked the side of the wall in an blocked it. To find out though they would have to take an X-Ray.

Once I had the X-Ray and the results came back, I think it surprised them all. The line was far too short. it was only just inside the vein where it needed to be. So much so that they were worried about even putting anything through it, it could have easily not gone into the correct place and maybe even put the Chemo into my lungs (that's what I was told, I'm not sure how accurate that was though, so don't quote me in any medical journals). It hadn't fortunately done any damage whilst using it, but it certainly need to be looked at. what they proposed was that they use the current line as a guide and slide down a new line, but longer into its place.

The perfect Hickman line fitted at The Royal Liverpool 

They couldn't get me down to the operating theatre on that day, so I had to have it done on the same day as my radio therapy and stem cell transplant, but that's another (blogged) story. When I was in theatre with the surgeon I explained the reasoning behind what they were doing and after a thorough look, they decided it was less painful for me to have a new line. The line that was in from Chester was in a vein that slightly damaged so they probably wouldn't be able to get a new one inserted into the same place without it causing me quite a bit of pain and would be a difficult procedure to perform. By far the easiest both for them and for me would another new line. I agreed to let them do it, but asked for some sedative as I know how uncomfortable they are whilst being awake. They used the old line to get some sedative into me, so it couldn't have been that badly placed for inserting anything otherwise they wouldn't have used it, would they?

I had the usual couple of days with a bit of blood from the surrounding area of where the line went into my chest, but I have to say it was looking pretty perfect they way they had done it. I think the surgeons were on a bit of mission to do better than Chester had. Not only does it look good, but it works just as well as the one I had done in Chester that lasted several months. So I now have a good looking line that they can use for both inserting any fluids and yielding any bloods that need to be taken.

Hopefully this will be the last line I have for a while as I think four is enough. My chest looks like I have been shot, with lots of scars and holes.

I was told that my situation will probably change there procedure at the Royal and they will start to X-Ray patients prior to using the line, just to confirm they are safe to use, rather than assume they are OK.

Thank you TMobileUK particularly Sorcha

Thanks to my many friends and family I am now back online. After a few messages via twitter Sorcha at TMobileUK has increased my usage policy. Hopefully it will be enough for my stay here in the hospital, but if it isn't she said to contact her again (I think Sorcha is female ... an Irish name I think).

Thanks to everyone who helped get me back online. It is really important to me. As well as keeping my family and friends informed, it is really useful to keep my mind occupied during the transplant.

As some of you know I live virtually on the net at the moment and to be without it is like losing an arm. I don't know what I would have have without all your support and help and love. Many thanks.

If Sorcha wishes to leave a comment or email me at sctiernan@gmail.com please do so. I hope she received my thanks on twitter. If not and you are reading this, a big thank you from my friends and family and of course me. You will have to accept a virtual hug from me as well (((HUG))) <3

TMobileUK helping me get conected

Thanks to friends and family tweeting about my situation, TMobileUK are looking into it to see if they can help. I've been twittering (if that a word) with a person called Sorcha who is kindly looking into it for me. So hopefully will have my full access back soon so I can communicate properly using my laptop, rather than the phone.

If I don't get any joy from Sorcha, my next step is to email the CEO of Everything. Everywhere who owns TMobile. I've been given Olaf Swantee' email address along with his PA Sue. Hopefully though I won't have to do that and Sorcha can sort something out for me.

Thanks again to those who are helping in any way you can x

Trying to blogfrom my tablet

I'm seeing if I can blog from my tablet to see if it gets past the t-mobile restrictictions. They still haven't called me back, I think they must be on a different time zone to me!!!

T-Mobile about to cut me off the Internet!

I have had a text through from T-Mobile saying that I am 80% 0f my monthly fair use policy and to visit t-mbile.co.uk/broadbandhelp for info on what to expect if you reach 100%

What this says is that if I reach 100% they will cut off the internet, but I will still be able to use my phone for basic things like email etc.

I have telephoned T-Mobile and explained my situation to them, that I am a cancer patient, currently undergoing a bone marrow transplant in isolation and the internet is my own form of communication. Although the woman I spoke to seemed very nice, all she told me is that there is a fair usage policy and that they can’t change it. I asked to speak to someone who could and she said she would get her manager to ring me back in about an hour.

I’m hoping that they can change it so that I can have the internet during my hospital stay. There must be someone who can authorise it.

I can just see the headlines now, ‘T-Mobile cut off internet for dying cancer patient’ I’m sure that will go down well with the publicity campaign.

So If I suddenly stop blogging, it isn’t because I have popped my clogs (although it might be but unlikely) it’s because T-Mobile have cut me off!

Best laid plans

Yesterday was my big day and I was hoping to be able to stream my transplant live. I’m sorry if anyone tried to log on to view it, but I wasn’t fully compos mentis to do anything about it.

I mentioned that my Hickman line wasn’t working, well I had to go down to surgery first thing yesterday morning 8:30 am for them to have a look at it. They decided they couldn’t do anything with the existing line, so had to put a new one on my right side again. I asked if they could give me some kind of sedative to help reduce the pain, which they did for me. I could still feel some discomfort, but it wasn’t as bad.

As soon as I got back up to my room, I was told that the ambulance/taxi was there to take me to Clatterbridge for my Radio Therapy.So off I went in a wheel chair to the taxi and then off to Clatterbridge. I was falling asleep in the taxi, as I hadn’t really recovered from the Hickman Line going in.

I was taken to the Radio Therapy section where I didn’t have to wait too long before going in. As in the previous test I had on Monday, they began too pack me all up so that everything was aligned with the lasers so they could begin the radio therapy. Not long after they had finished packing me, which is the longest part of the procedure I had felt really sick and had to sit up. They got me a bowl to be sick in, but I managed not to actually be sick. Unfortunately they had to complete set up again from the waist up as I had destroyed what they had done. So after the reset I was ready to go again. I felt a little better and just had to go for it and hope that I wasn’t sick. I had the full body radio therapy for about 20 minutes on each side. So I was in there for just over a couple of hours including set up etc.

After being taken back to the Royal Liverpool Hospital via the ambulance taxi again I went back to my room. Nigel was waiting for me as he had completed his extraction. I will post some video and pics that he had taken on another post. He said he felt relatively ok. He had some tingling in his face and arms that they gave him some tablets for, but I think he managed it ok.

It wasn’t long before they brought the stem cells up to be infused into me. It wasn’t how I was expecting. With the last one there was seven bags of yellow liquid (the stem cells) but with this one it was just one bag that looked like blood. i.e. red liquid. Apparently when it is fresh thats what it look like.

I don’t remember it actually going into to as I was totally exhausted and kept falling asleep, probably due to the sedative still that I had earlier during the day. I have a vague recollection of Nigel leaving, but not much and then Charito left later on, but again don’t really remember it as I as out of it.

The next thing I remember is waking up being sick. Which I did a couple of time throughout the night …. oh just remember I through up when Nigel and Charito was here, I think before my stem cells. I remember Charito taking the bowl off me and I know that Nigel was here at the time, so that must have been prior to the stem cells going in. .. I think I was probably sick about three times during the night but can’t be sure.

I’ve managed to have a shower this morning and keep some cereal down (so far) I’m going to try some soup for lunch and see how I get on. At the moment though I feel OK’ish. I’ve just come off the phone from Nigel and a little bit of a moment where I thought I was going to be sick again. Hopefully I will get through this with relative ease, who knows what is to come!

So unfortunately the live feed never happened and to be honest I don’t think this internet connection would be fast enough anyway. So once again sorry if you was waiting to see the exciting STC Live.

Visitors

Similar to Paula, I had a visitor yesterday that sat outside for while.

Hello my name is Sally the Seagull

I don't think it will be back again, but if it is I will let you know. I was thinking of using the birds to communicate with the outside world, but as I can't actually open the window, it would be a bit of a problem.

Broken Line

Yesterday they tried to use my new Hickman Line, but unfortunately couldn't get any blood out of it. Either I have run out or there was a problem with the line. There is no problem getting things in on both lines, but try as hard as the can they just couldn't get it to give any blood. We tried various things, such as the usual coughing and breathing (deep breaths) as they pull on the syringe, but nothing. Even tried doing a little dance with my arms in the air and trying to move my body vigorously, but still nothing.

So after several attempts they decided to give up and refer me to the line specialists. I had to be taken out of my isolation ward and taken downstairs to where she lives. Being taken out of the room isn't a problem at the moment as I haven't really started the serious stuff until after Thursday once I have had the Radio therapy and the new Stem Cells from Nigel. I have to go to a different hospital again (Clatterbridge) on Thursday where I will be mingling with others, so not really a risk. Although I will obviously avoid any real contact with people as they might be carrying some kind of bug.

There was another issue with my line as well. The fancy way the surgeon had fixed the line in was causing a bit of concern here as to how they were going to keep it clean. The surgeon had adapted a stoma ring (which are used for colostomy bags) and stuck it to my chest and then sutured the line to it. This works really well and is a good solution to stopping the line from moving while it heals in place, making sure that the collar doesn't move position. Ideal if I wasn't going to have a stem cell transplant that is where they need to keep a constant eye on the line for cleaning purposes in case I get any kind of infection. So now there was two reasons for seeing the the line specialist. The fixture needed looking at and to see if she could get the line working.

The porter took me down to the bowls of the hospital where the specialist, whose name is Helen has her office and staff of a couple of nurses. The office/examination room is based in part of the hospital that is no longer used. I think it is an old ward that is closed at the moment and they are just utilising the space. However I think the isolation for them has made them a bit crazy. For those that know Liverpool and the how people are here, you will know that some of them are the funniest and nicest people you could ever meet. I think these girls/nurse/specialists have these type of people but have been on there own down there for too long and it its sent them a bit doolally (crazy). They were great fun and we never stopped laughing. They had never seen a line fixed the way mine was and were so intrigued by it that they called the hospital photographer to catalogue it so they can use it for training purposes. Helen the specialist was wonderful and managed to remove the stoma rind and clean the line. She had to use steri strips to secure the line again fastened in a circular method that made sure it didn't move. It looks and feels a lot better now, as the stoma ring was irritating and we couldn't get to the dried blood to clean it up.

Now to the second problem, not being able to get any blood out. Helen tried the same methods first we tried upstairs on the ward, but a lot more vigorously. Lots of deep breathing methods and trying to get it to flow if I was flat on the bed or sitting bolt upright. She managed to get a few drops out, but it wasn't enough  to say it was working. Helen explained it could be a couple of things; either the line needs cleaning, which they put some kind of fluid in the line and then leave it for a couple of hours and then flush it through, or it is in the wrong position. The position could be to close to one of the walls or lining and what is happening is that when putting fluids in, there isn't a problem as the pressure just pushes the wall away away and the fluid goes in ok. When trying to get something out the opposite happens and the wall or lining or whatever else it is up against, gets sucked into the line, hence causing a blockage. The only way to really find out is to take an x-ray and see where it is in relation to the heart and the surrounding area. Arrangement were made for me to have an X-Ray and I was taking back to my room and left the girls to calm down. If ever you need to cheer yourself up, just go and visit them I'm sure they could do with the company.

Cannula

I had the X-Ray done later and as I mentioned in a previous post, I was looking out for Paula or Bernard, just in case they were around in the hospital, but I never saw them. The likelihood of seeing them was pretty slim anyway. Helen needs to review them and I think she is doing that today. The doctor was in before and said that he is waiting for Helen to review them. In the mean time though they still need to get some blood out of me, so the doctor has put a cannula in so that they have something to use.

***** STOP PRESS ***** STOP PRESS *****

Just had a visit from Helen the specialist. She came to tell me what the issue is. After looking at the X-Ray they can see that the line is VERY short and only just in a vein. So I'm going to have to go down to theatre to have it fixed. I'm told they will use the current line to as a guide and somehow slide it down the same way, so they wont have to do a complete new hickman replacement. I just hope it isn't as uncomfortable to fit as normal. The reason I had this one fitted at Chester prior to coming to Liverpool was that I would be under sedation as I didn't want to go through the discomfort again. Oh well I should have known that it would have gone wrong, if it can go wrong it will go wrong with me, I always have to be a bit unusual. I've heard lots of people say .... 'That Sean  ... oh year he's the unusual one isn't he.' ;)

So the problem is now when I'm going down to theatre! they are trying for today, but it depends on how busy it is to fit me in. If they can't do it today, then it will have to be tomorrow morning as that will be the only time I'm available, which will mean a very busy day tomorrow. First thing Hickan fixed, afternoon radio therapy and then late afternoon for my stem cells.

I just hope the Hickman line isn't uncomfortable too much as I will have enough to contend with already without additional pain from my line. It's a shame I can't have some wine, I could do with a glass or twenty now.  .... sigh!

Prayers and thoughts from fellow bloggers

After waking up this morning, after a good nights sleep, I decided to have a quick look at my phone for the time. It was 5:35am which is about the normal time that I wake up at home, so was really pleased to have had a relaxing night without being ill or not being able to sleep. I did my usual thing whilst looking at my phone though and that it to check my emails …. I’m addicted to my internet life … I noticed that I had a few updates from blogs etc so decided to switch on my computer and have a proper look.

It started with a message from Sandy with the kind thoughts that I normally receive and the help she is providing with her Reiki. She also mentioned that Denise from Tim’s Wife blog was having problems leaving comments on peoples blogs and could I go over and have a read of her blog as Denise was trying to get in touch. After reading Denises’ comments about having her church pray for me as well as other Myeloma patients such as Paula who she follows as well, I felt a bit overwhelmed to think that there are all these people from various places across the world who care and love each other enough to take the the time out of their lives to think about others, including me.

Straight after reading Tim’s Wife blog I caught up with Paula’s blog and she is feeling better today than she has done and might be going home. It’s odd to think she is in the same  building as me while others are across the water but we are all connected and know each other. I thought I might have seen Bernard (Paula’s husband) yesterday as I was being wheeled around the hospital for x-rays and to see the line specialist (more on that in another post), but I didn’t. I’m sure I will catch up with her at some point soon. If you get a chance and you don’t follow Paula, shoot over to her blog and put it in your favourites. She will always keep you informed and make you laugh at the same time as well as amaze you with her knitting skills.

Just after reading Paula’s blog I got an update through from ‘Walking with big EZ’ -  Prayers Please for Multiple Myeloma Friends in the UK. The preview picture that was showing up on my tablet pc was the gorgeous Paula with what I can only describe as one of the best pictures I’ve seen of her (oh wait .. is that one of the pictures I took at the restaurant of her). The blog post from Linda is dedicated to Paula and myself and encouraging other to pray for us both as well as wishing us well and offering her own prayers and encouragement.

I wanted to thank everyone, not just those that have written on their blogs, but everyone who has sent me messages on twitter, email, facebook and all the various other forms of communication, for the best wishes and prayers that they are offering. It doesn’t matter what religion you are or what faith you have or even if you believe in god or not. The important thing I think is that the power of all these things no matter how small or large, do make a difference somehow. Maybe it’s the power of a God or some other force; to me it doesn’t make a difference what religion or belief you have. I only know that for me the love, thoughts and affection and the time you take out to wish me well makes a difference to me and whoever or whatever the power is that is making it work, I very much appreciate it and hope that I can return my love and thoughts to you and hope that in some way it helps you as much as your prayers and thoughts are helping me.

Thank you all x hugs x

More Chemo and Toast

I didn’t have a good nights sleep last night, nothing to do with the Chemo or anything else I’ve been having on my first day, just the usual staying in a different bed and all the noise of the machines etc. I’m sure I will get used to it over the next few days. I’m not exactly going anywhere, so there wont be a problem with me having a sleep during the day. I’m currently having some more Chemo right now as I type. Not that it is somehow connected to my computer and it’s drips with each key I press; although that would be a bit of a geeky thing to do, It’s just that I thought I might as well set up the computer and get my blogging software installed and give a quick update.

Breakfast this morning I had some All Bran and some toast, normally I would just have some cereal at home …. oooh hang on my machine is bleeping, chemo just finished ….will buzz the nurse .. back in a min. OK back now … I was offered toast as well this morning and I have to say for some reason toast always tastes better when someone else makes it. I had a couple of rounds (why is a square slice of bread called a round!) with butter mmmm very nice. I had some marmalade as well, but didn’t use that.

Did I mention  that it felt like I was going on holiday in my last post. Prior to getting here, I was apprehensive about the process, for some reason I feel very confident that things are going to be OK, which is a good feeling to have. I said to Amy and Charito yesterday, it feel like I am checking into a hotel for a holiday. After thinking about it, I haven’t really been anywhere since last time I was here. In fact the last time I used the suitcase was for my last stay. It goes to show that I don’t get out much. I’ve been away with Charito to her sisters for the wedding, but that’s the only other time I have been anywhere. So surprisingly I’m really relaxed about the whole thing at the moment and taking it in my stride. I’m sure I will feel ill as I go through it, but at the moment I’m just chilling out, relaxing and to be honest and strangely enough enjoying it. Lets hope I can continue feeling this way.

First day of my hospital holiday

Well I'm settled into my room at the Royal Liverpool hospital after quite a busy day. The morning was spent over at the Clatterbridge Hospital have my test session of Radio Therapy. It's the first time I've had radio therapy, so wasn't quite sure what to expect. It's a bit unusual as basically what I had to do was get nearly naked, apart from underpants and lie on a bed in the corner of the room. In the meantime I had a people working around me, trying to put me into, what can only be described as a shape of a box. They use packing and spacers to align my body so that they are in the correct position. They use lasers to make sure that they are spot on and make very minor adjustments. They then put little stickers and pen guidelines on, which I think are used as reference points (the tattoos I had the other day are the starting markers I think). The reason for this is so that they Irradiate only the target material and not any vital organs i.e. my bones/marrow and not my heart and lungs etc.

It takes about an hour to go through the process of setting up and after all the marks are done they move a clear perspex sheet along the side of the bed and put a couple of plates against the wall. For some reason I had in mind that I would be going into some kind of machine, but I didn't, the bed with along with me on it is up in the corner of the room and whatever they fire at you is done from somewhere else across the room. The staff left the room for about 5 minutes, if that and then returned. All was done. I heard a bit of buzzing noising noise for about 30 seconds and I think that was the test dose of radio therapy firing.

Thursday will be the proper dose of radio therapy and I will have to go through the the set up process again, but should be a bit quicker as I have the marks on my body that they have put special tape over, I think the word special here means very sticky and doesn't come off easily, so it will be fun trying to get that off afterwards. They told me the radio therapy will be longer on Thursday as well, but I don't know how much longer, I think were talking minutes here though rather than hours!

Amy took me and Charito around today and it's been really good to see her. It's been a while since we have really had a laugh and a joke or even time to talk about anything as she normally has the children with her and we know how difficult it can be to look after one child, let alone three and still have a conversation with someone. Today though she was on her own so we chatted quite a bit. She came over to our house first thing and enjoyed a cooked breakfast with us as we knew it was going to be a long day. After the radio therapy we had a coffee and biscuit/cake in the cafe and then set off to Liverpool to the Royal hospital.

Upon arriving there was no waiting, which I was a bit surprised about as I was expecting to have to wait for the room to be cleared or vacated by the previous person, but no it was ready and we were let in strait away by Sarah who I recognised from my last SCT which is just over a year ago. The 29 Aug 2010 was my last stem cell transplant, so this year has been in preparation for this SCT, so much for a quality of life.

There was the usual paper work to go through and procedures to be informed of etc which didn't take too long to sort out. I've had all my observations done and hooked up to the drip and anti sickness pump. I've had my first dose of Chemo, so will let you know if I feel sick tomorrow; hopefully the anti sickness keeps it off.

The food was brilliant and I had a paella, Chicken and Charizo which was lovely and I would say to restaurant standard (McDonalds is a restraurant, right? ... only joking it was really nice).  You could easily pay £15 to £20 for the meal I had today. For desert I hot treacle pudding with ice cream ...  mmm very yummy. I thought I might as well enjoy the food while I can, I'm not sure how I'm going to be affected by the chemo and SCT over the next few weeks. At least that's my excuse for making the most of it.

I was going to write a bit about being in the Car with Amy and it really being my first experience of letting my daughter drive me anywhere of a greater distance than to the shops and back, but I think I would need lots of pages to describe my experience and I might leave it for another day. Needless to say I feel very sorry for Neil her husband if he ever has to go anywhere with her where she has to drive. As I mentioned to Amy it was until today that I was worried about my three grandchildren being in the car with her ..... She did reassure me that she had air-bags!!! I wonder if they door some kind of child protection suits or very large cotton wool to wrap them up in. A very scary experience for me and I can see why there are lot of accidents on the road, I doubt however that Amy has ever been in one to be honest, but probably seen hundreds in her rear view mirror!

I will write more tomorrow and keep you all up to date.  Thanks to everyone who has wished me well on emails and texts as well. I'm staying positive as usual and will see you all soon when I get out (that sounded as though as I having a stint in prison).

Anyway it is 12am now so going to get my last lot of tablets and see if I can get some sleep.

Hugs to everyone x

Occupy Everywhere–Growing even bigger

Even though the Occupy Wall Street campaign has now only started to get reported in the Media, it is because they have no choice. The people are standing up to the banks and the financial situations and no longer standing for the corruption. It’s spreading and the media is forced to report on it.

Miracle